I'll Never Give Up On You!

Mommy Guilt Blows....

2012-02-10T08:51:00.003-05:00

I'm sure every mother struggles with mommy guilt from time to time, especially if they have more than one child. Having twins, I was quite sensitive to the fact that I wanted my kids to feel equal, have equal attention, etc. Then you throw in the whole autism thing and well it was just nearly impossible. The more decisions I made in favor of Tyler, the guiltier I felt about Ben. I remember sitting in a parkin glot crying one day when I had to make a decision that would benefit Tyler but prevent Ben from going to preschool for another year. And then...when we did find a preschool we could afford, Ben was doing horribly, actually regressing and spent a few nights screaming in anger about how he didn't want to go. Talk about a stab to your heart. So yeah... mommy guilt blows and I felt it in full force yesterday.

I find it nearly impossible to manage life's tasks and responsibilities at perfection. I always tell myself, and others when they are feeling inadequate, to just be the best they can be at that moment. I.e. if you are at work, then be the best worker you can be, if you are at the park with your kids, then be the best momny you can be and not worry about cleaning the house or bills, etc. Basically, to try to focus on whatever the priority is at that moment. My priority right now and in the past few months has been to work on strengthening my marriage and finding creative ways to get our family into a better place financially. At the beginning of the school year, Ben's parent teacher conference went well. Yes, we all know he is a talker, but other than that he seemed to be doing good and met all of his objectives for entering into kindergarten. When we got some of his standardized testing scores he was low in Math so we started working on math stories at night instead of regular stories. THen we got a note from the teacher last week to set up parent teacher conferences. This mid year conference is for those students who aren't quite where they should be at this point and may need some extra help. Ok, sure thing. I want to help whenever we can.

So last night was the conference. It was also the night that the boys to go the ACC for the study so it was just Mommy going this time becuase Steve takes the kids to the ACC (ben loves the study by the way). Ben's teacher is fantastic and she started off by saying Ben is a lovely child, always happy, full of life and energy, gets along well with all the kids, doesn't start to much trouble, she said she's convinced he'll be the next late night talk show host, LOL. But that he is not meeting his objectives and if he doesn' t improve on a certain # of items, he will have to go to summer school. In theory the idea of summer school doesn't bother me, Ty's been going since he was 3, its just that I feel so guilty that he's that far behind and he's not been my focus. In fact, I'm not sure Ben's ever been my #1 focus :( I've overcompensated and even spoiled him at times as a result of that fact. Which leads to my next concern.

There were times in the past I had a concern that potentially Ben had Aspergers... as he progressed in his new preschool those fears began to fade...and so did some of my mommy guilt. In yesterday's meeting, the teacher said that Ben's biggest problem is his inability to focus. He's very scattered and has a hard time sitting still and concentrating on anything for a period of time. Now, compared to Tyler, Ben's has stellar focus, but apparently compared to typical children his age, Ben is having trouble. She said she doesn't like labels and it's too early to tell but the label ADHD was thrown out there. My heart sank...oh Benny, I'm so sorry I've been focused so much on Tyler and his skills and his nutrition and his everything that I have let this go unnoticed. So I left the meeting with homework of my own...sat in the car and cried for a bit. Talked to Ben briefly about how he's a great kid and that mommy and daddy are going to help him meet his school goals and we started on a little work last night and will come up with a more specific schedule of activities each night. I also briefly talked to him about nutrition. He's a carn junkie as many of you know, my concern with him is the same as Tyler. He'll just choose not to eat if it's something he doesn't like. We work on creative ways to get him to eat better but it doesn' tseem to work. The teacher says this is common with kids with ADHD as it sometimes takes an arm and a leg to get those kids to eat and sometimes nutrition falls by the wayside as they just need calories. The thing is, i've spent years and many $$$ on Tyler's diet, eliminated gluten and casein, food dyes, additives, etc. Giving him enzymes and probiotics and all these other things to help aid digestive and give him a clear head to learn. Not Ben :( So we told Ben things are going to change with his diet as we want his belly and mind to feel better. I'm not sure yet to what extreme as GFCF diet is so expensive but it has helped Tyler tremendously and it has been shown to help kids with ADD/ADHD as well, so we'll see. Either way we are going to make sure ben has a more "clean" diet as well as a big push to help him meet his objectives at school. It's time to make Ben a priority.

On another note, I sat in on a panel discussion at the Autism Collaborative Center this week. It was for those of us who blog about autism and then people could ask us questions, etc. It was interesting. There were 4 woman on the panel and each of blog for different reasons and about different things. Some are to help others with resources, some are to share info about their kids, some are to vent, etc. It was interesting. Lots and lots of blogs out there, for husbands, wives, family members, siblings, even grandparents. I barely have the time to write in this one lately it seems so not sure how much I'll go looking but I love knowing the resources are out there if I need them.

We have Ty's official IEP meeting in March where we will find out where he is on his goals this year and discuss a plan for next year. I'm not sure if he will be offerred extended school year or not, we will see. And then the dreaded summer is coming, where I try to find an affordable plan that meets the needs of both boys... and find a way to haul them around to each of these activities while working full time. Life gets tricky sometimes for us all eh.

I guess that's all for now, not much good news to report, I just got a huge reality check and it sucks.

January 2012

2012-01-26T13:23:00.006-05:00

Oh my goodness, I've been horrible about updating the blog lately! I missed the holidays!

Biggest news over the holidays is we went with round 523 of trying of potty train Tyler but this time... it's finally working :) He is doing fantastic, even has a few completely dry days here and there. We take him potty every 30 minutes at home and at school. For the most part he goes every time, he's just starting to tell us when he has to go, sometimes pee but recently he began telling us when he has to go poo. Sometimes he's right in the middle of already going but what's good is he's recognizing it and letting us know. We had a secret santa that gave us an itouch and we added applications to it that Ty didn't have available on his IPAD and initially that was his reward for sitting and going on the potty. We also used an app called the Potty Journey (I think) about a little boy named Jacob and Ty loved the app. He actually started using the app to tell us he had to go potty and now he uses it to tell us what comes next, i.e. flush, wash hands, etc. Now we no longer need to reward his good behavior, he just gets excited at the fact that we are excited that he went potty. He's doing really great.

Santa visited our house on Christmas Eve. We had previously tried to go visit santa. A local brewery was having a sing along with Santa and pizza for kids. We were attempting to go there for dinner but as soon as we walked in we knew it wasn't going to work. The place was packed, no where to sit. Ty immediately headed for the kegs in the back room, either to get away from everyone or to get his drink on so that it wasn't so stressful, LOL. So within about 30 seconds from walking in we were headed for the door with two crying kids. One who couldn't get out of there fast enough and one who wanted to stay and see Santa. Ahhh the joys of having twins where one has autism and one is typical. So Ty and I stayed home and Dad and Ben went back and Ben had soooo much fun. There is a pic of him playing foosball, his first time. Since then, one of our neighbors gave us their old table so that he could play more often.

New Years Eve we followed the tradition of spending it wtih my dads side of the family. My aunt just built a massive pole barn and they threw a big bash, had a big inflatable, basketball, etc. Attaching a pic of Ty making a basket, he was very interested in playing basketball in the inflatable and the big hoop.

School is still going fantastic. He does all kinds of activities and worksheets on his own that always amaze me. Like he rolled two dice and added them up on his own, etc. The other day he really surprised me though. We were at home and he saw a january calendar that Ben had made in school. He then asked for a crayon/marker (by pulling out the bin in the closet) and then he wanted a piece of paper and he started writing out numbers in chronological order from 1 - 25. This is the first time he has ever wanted to use a crayon or marker at home of his own free will. He prefers to use his finger on his IPAD, so it's awesome that he was choosing to use a good old fashioned writing utensil and paper!

This was the first year that Tyler seemed to understand Christmas and be interested. He loved the ornaments (even broke a few) and loved sharing his thoughts with us by using his December page on the Dynavox. He'd point out rudolph, santa, lights, etc. whenever he could. He also would try to say Ho Ho Ho.... came out more like Ah Ah Ah but I knew what he was getting at.

Tyler says "ho ho ho"

2011-12-14T09:44:00.004-05:00

Tyler is getting very chatty with his dynavox and he has a new app on his IPAD that he's also using a lot to talk. This weekend he told me "good night" when I put him in bed and then requested "hugs and kisses" :) At breakfast on Sunday, he kept jumping off his chair. I corrected him 3 times and finally I said, "ENOUGH, sit in your chair"....he said "leave me alone"...hee hee...grandma and I looked at eachother and tried very hard not to laugh. I love that he's using it not only to make requests or label items but to share his feelings and have normal day to day conversations.

He loves our christmas tree this year. It's the first year he seems to "get" Christmas. He has a December tab on his dynavox that has many holiday buttons like rudolph, santa, tree, lights, etc. He also has a Christmas story on his ipad. I often mention that Tyler is non-verbal and I think that some who do not understand autism think that he doesn't try or he's silent. Tyler is very chatty, in fact, he often sings when playing his piano, I love it. Speaking of which, he does know all of the notes on the piano and is starting to play Three Blind Mice. Here's a video of Tyler playing with the tree and saying ho ho ho.

And a secret santa got us an itouch which we are hoping to use as a reward for Tyler going potty on the potty and for Ben to use since he often gets jealous of Ty's IPAD and although we try to share it, the balance is definetly not equal. Ben doesn't know about it yet, we are workiing to get apps loaded. Yeah!

11/10/11 - OH HELLYEAH!

2011-11-10T14:08:00.003-05:00

Last night we took the boys out to dinner. We had Tyler's IPAD and Dynavox with us. I asked Tyler what his name was. He pushed a button on his Dynavox that said "My name is Tyler" (and looked at me as it talked for him). I asked him how old he was, he said "I am 5 years old". I asked him what his brothers name is. He said (pushed a button), "My brother's name is Ben", I asked him his favorite color and he said "dark"... hee hee, gonna have to work on the colors. Maybe I should suggest a dark color to him next time.

Although I had once asked him a question about what he did thta day that he liked and answered, I wasn't sure if he was answering me or just playing. Sometimes he'll count for me and show me certain things, but last night I had a conversation with my non-verbal 5 year old son for the first time. AWESOME!

What's even cooler is that he's starting to learn that if he knows how to spell a word, he can say anything with the Dynavox. The teacher was asking him a question about the calendar. He started to type and she went to correct him as he was not on the "months" page of the Dynavox so she was going to redirect him. Then she noticed he had typed a "N" so she paused. Tyler typed out the word November and then pushed the it so that it would speak "NOVEMBER"... we knew he can read many words but it may be word recogniztion vs being able to spell them correctly. So once he learns how to spell a core vocabulary, Tyler will be able to type, i.e. say, whatever he wants. YIPPEEEE... CANNOT WAIT to have more conversations with TYLER!

Also, I gotta say that I am so proud of Ben. He and Tyler have been somewhat fighting over the IPAD lately. We are considering getting an ITOUCH for Tyler ot use for potty training reinforcement that is only played with after potty which also could be used by Ben and therefore no fighting over IPAD. Anyway, it's a hard concept for Ben to understand why Tyler is still in a diaper and can have free reign with the IPAD and he has to earn the usage by not having any accidents all day. Ben typically wakes up early to play on the IPAD while we are getting ready for work and Ty is still sleeping. This morning I come downstairs, Steve is in the kitchen with the boys and Tyler had hopped up to play with the ipad when Ben stepped away for a minute but it was sitll Ben's turn. Usually Ben would start screaming and pulling at him or getting upset. Today, he was so patient and loving and just telling Ty it was still his turn and that Tyler could watch him if he liked, etc.

November 8, 2011

2011-11-08T14:18:00.003-05:00

We had a stellar parent teacher conference for Ty last night. His teacher thinks he's either speed reading or scanning for content. They present him with a picture of some sort of activity and then he has to pick out one sentence out of three sentences that matches the picture. The teacher said he's doing it so quickily he cant be reading it all unless he's scanning for content because he's getting it right. The conference went very well, he's doing great. He read Goodnight Moon to his classmates using his dynavox. He told the gen ed teacher to turn back her clocks (last friday in advance to the day to turn them back) and even gave her the proper date to turn them back. He's starting to match music chords from his IPAD to the keyboard at school.

Today however I"m afraid Tylers getting sick. And there is a little girl in his classroom right now that has a stomach virus and as well all know, sensory wise, Ty takes a long time to recovery from stomach bugs. He's refusing to eat today and is drinking very little, very lethargic compared to his normal self. Fingers crossed he'll be ok tomorrow.

Here are the details of the study that both Tyler and Ben will be participating in on Tuesdays and Thursdays after school:

Purpose of the Study: The purpose of this research study is to gain an understanding of the effect of an integrated play group on social skill development in children with autism spectrum disorders (ASD). In addition, we hope to gain a better understanding of how attitudes toward and acceptance of persons with disabilities are impacted among peers.

Procedure: Should you decide to allow your child to participate, he or she will be involved in a play program for children with autism and their peers. The program involves a small group of 3-5 children who will meet two times per week for approximately 45 minutes over a period of 2 or 3 months. Play sessions will be held primarily during late afternoons to accommodate daycare and school schedules. We are following the guidelines established in a field manual designed by Pamela Wolfberg for Integrated Play Groups. The integrated play group model was designed to support children with ASD of varying ages and abilities in shared play experiences with their typical peers. The model uses natural settings, well-designed play spaces and specifically-selected play materials. Play sessions are organized with consistent schedules and routines that foster familiarity and predictability. Children on the autism spectrum are the novice players while peers are identified as the expert players, serving as role models and guides during the group process. The study is being conducted at the EMU Fletcher Building in Ypsilanti, which houses the Children’s Institute and the Autism Collaborative Center. The study has been approved by the EMU University Human Subjects Review Committee. Approximately 10 children will participate in this study.
Play sessions will be video recorded to evaluate the progression of each session and to note the engagement of the players. All videos and observation records will be secured in a locked cabinet in the investigator’s research lab at Eastern Michigan University. Videos will be reviewed only by the principal investigator or graduate students trained to evaluate play sessions according to a format developed for the integrated play group model. Videotapes will be destroyed when data collection and analysis for the study is completed, within a period of 3 years. All graduate students have completed coursework in research methods and the ethical treatment of human subjects in research at Eastern Michigan University. Graduate research assistants are instructed in the specific confidentiality and data handling procedures for this investigation.

As part of the program, the peers (expert players) are provided with information about the nature of autism spectrum disorders and taught ways to assist children with the condition. Open-ended questions will be used at the initiation and termination of the program to understand the expert players’ feelings Interviews will be done in small groups and last 30-40 minutes. We will ask all parents of the participants to complete a questionnaire about their play styles and preferred activities. The questionnaire should take about 20 minutes to complete.
Confidentiality: Names of participants will not be reported in any findings. Pseudonyms will be used in research reports and presentations at professional meetings to maintain the confidentiality of the participants. The consent form which includes your name and any other identifying information will be stored separately from the results in the principal investigator’s office in a locked cabinet. At no time will your name or the name of your child be associated with the results. All data gathered during the project will be kept in a locked cabinet in the investigator’s locked research lab.
Expected Risks: Children may feel uncomfortable as the program begins. All efforts will be made to assist participants in the transition into the program. Sometimes children with autism become upset and disruptive when they are frustrated. If this happens during the play sessions, there are several adults who will be able to help them calm down and keep them from harming themselves or nearby others. The play groups will include 3-4 adults working with the children who can immediately intervene with and support all of the children.
Expected Benefits: We anticipate that there will be positive effects on the social skills of the children with autism and that opportunities to interact with their peers will increase as all students become more familiar and comfortable with their abilities. In addition, we expect that peers will become more familiar with persons with autism and will feel more comfortable in interacting with them in more spontaneous ways. Research has shown that here are many benefits to the children with autism who develop better social skills and to their peers who are more sensitive to individuals who have learning and performance differences.

!

2011-11-02T20:31:00.008-04:00

Halloween was spectacular! Tyler actually let me draw a mask on him...the downfall is that it was waterproof eyeliner and we couldn't get it off with normal baby wash so he went to school on Tues with a mask until we could get some eye make up remover :) Ben was fun this year, he wanted to visit certain houses versus get candy. we had one house in our neighborhood with tons of decorations and to our surprise, they had a haunted house. Apparently this is smoothing they do every year. Ty and I waited outside while Grandma, Ben and Dad went through the haunted house. Shortly after that we all went home. Leah (batgirl) handed out candy for us.

Thanks to everyone who donated to the RunAThon, Tyler completed 3.5 laps for his gen ed kindergarten class and guess what....they won!! There was a winning class in each grade, yeah Ty! We also learned that they raised the 10,000 they needed to buy the playground equipment.

Ty's teacher sends a notebook home of notes each day in his backpack and we are loving all the positive feedback, I wanted to share a little:

10/25 "Tyler had an excellent day today. I had an observation with Dr. DeYoung (principal) and Tyler 'wowed' him like crazy. We did a two way sort activity and he spelled all the words correct before he stamped the letters."

10/26 "During calendar today I asked Tyler how many days we've been in school. Yesterday was 36 and that's what our classroom chart showed. So he answered "37". He "blew" us away."

11/1 "Tyler counted by 5's today (with his Dynavox) up to 40 and then hit "41" to tell how many days we've been in school"

11/2 "Tyler had a good morning. The TA was amazed by his sentence typing during seatwork today."

We are so looking forward to his parent teacher conference next week. If I could have one dream it would be that Tyler will eventually go on as an adult with a diagnosis of Aspergers and be able to live a safe, happy and independent life as a "geeky" adult:) I am so very proud of him.

Our neighbor works at EMU and she texted me today that she saw my speech at the ribbon cutting ceremony at the ACC/Childrens Institute . I asked how and for some reason it was showed during a meeting today at EMU of about 25 ppl. I'm thinking, oh great, everyone saw me crying. But then she said that the whole room was crying when they watched. I'm proud to have made an impact. Promised Ty long ago that I'd do whatever I could to help and well I feel like hearing it first hand vs reading stats on a piece of paper can make all the difference.

Speaking of the ACC, a play group/study opportunity has come up. It looks like both the boys may be involved on Tuesday's and Thursdays and it may help foster a better "playing" relationship between the two boys:) We are at the beginning stages so more to come on that later but the best part as since it's a study it doesn't cost a thing, yeah. We are still trying to recover financially from 3 years of crazy.

So excited because this weekend will be the first time in a year that Steve and I get to sleep in together in our own bed as our kids will not be home, yeah! The boys are staying with Steves Dad and step mom on Saturday so we can go to a wedding reception. SOOOOOO excited, thanks guys!

Happy fall to all.
xoxo

10/25/11

2011-10-25T09:45:00.003-04:00

The end result was that the RunAThon was a big success, yeah! Tyler did 3.5 laps in the 10 minuts they were given. I will say though that I was a bit worried about him at the beginning. First of all it was a really cold day, secondly, the music outside was so loud it was hurting my ears so I can't imagine how it felt when our ASD kids had to stand right next to the speakers. Believe me they weren't handling it well. Then the kids were moved over to a lawn area for pictures, Ty had his picture taken with his Gen ed class. Again he was not so thrilled. I htink mostly he was just really confused about what was going on and as we know uncertainty is entirely upsetting to Ty. So then his aide had two kids she was watching over and they started walking to the starting point, Tyler seriously unhappy, kept running forward and trying to pull her hand down and gritting his teeth at her. He looked stressed and therefore I was stressed. I wanted to run to him and help him but wasn't sure of proper procedure and didn't want to make things worse. Finaly at the starting line I couldn't take it, he was not happy and neither was I. Steve and I intervened... and luckily to the pleasure of not only Tyler but his Aide, who now only had 1 ASD kid to try to get running. Once Steve and I jumped in and talked to Ty about what was going on he seemed better and then we ran with him (although we werne't dressed appropriately) and he was happy as could be. I am so happy we joined in the fun and supported him.

In general it's sorta tough. I HATE seeing Tyler upset knowing I may be able to make a situation better for him. On the same hand, I know that it's probably good for him to learn how to deal with uncomofrtable situations and to have to do something he doesn't paticular care for, I mean we all have to do things we don't like probably on a daily basis and we just have to deal with it. But watching your kid go through it is hard. I'm glad I'm not in the classroom every day so i don't have to see it all. Even when we were coming back into the classroom to get him settled so we could go back to work, we saw another kid being walked down the hallway with an aide on each side of him and they were sort of lifting him up and although his feet were moving, it was clear not much of his weight were on his feet as they were sort of pulling him back to the class. And although not hurting him and they were talking very calmly, I still struggled with it. Maybe cause I know who he was and care about him and his family but also because I would hate to see Tyler being pulled down the hallway like that. Again i don't know the situation or what was happening and I have full faith in the parapro's, it's just hard to see.

Tyler's getting into a bad habit of wanting to take everything to bed with him and literally piles it on his bed. The other day we found his night stand drawer on the bed, another day his rocking chair, a laundry basket. Basically anything in his view he wants to take to bed with him and then anything in his room he wants to have on his bed. Last night when it was time for Bed he grabbed his ipad (actually Carson's IPAD), the dynavox, two packs of diaper wipes and the bottle of hand sanitizer. I laughted my way up the stairs.

Ty and Carson apparently have the same IPAD and the same case (thanks CAROL!!!) and Tyler would up with Carson's yesterday and we are hoping Carson has his, LOL. Tyler loved Carson's IPAD. If we could have gotten it away from Ty we would have written down some of the apps. I'm definetly going ot need to talk to his mom. Steve is attending APP night at the ACC on Wednesday so maybe he'll run into her there and be able ot write down some of Carson's apps that Ty loved so much.

Oh and right now we have a new Dynavox which is much lighter and more modern than Ty's current version which broke. The speech therapist is going to try to make it so Tyler can use hte new version permanently :)Let's hope.

As you may know, Tyler is in gen ed 1 hour a week. I've attached a picture of Tyler in his gen ed class. This was the first time that he want to a station all on his own (no support of an aide) and participated in the activity for 10 - 15 minutes without support or prompting :) Awesome. Tyler's teacher is great as she email/texts me pictures/notes all the time about Ty's progress. There's another picture of him working on his fine motor skills. In this one, he's matching the number of pictures to the actual number. He was so proud of himself she said. When I asked if he got them right, she said "of course!" :) Yeah Ty.

On the home front, we want to try to tackle the potty training again. We feel we've tried everything out there and Tyler just lacks interest. Over the holidays we will be home more with Ty and hope to make some progress and hopefully one day be a completely diaper free home.

We have Tyler's parent teacher conference in a couple of weeks and are really looking forward to the feedback as it seems the news has been pretty good so far.

Ben's conference also went well. He came into preschool knowing what he should know and seems to be getting along quite well with the other kids, etc. The only issue he has (wait for it as it may shock you), is that he talks too much! LOL. Really???, our Ben, he's just so shy. hee hee. So they are working on appropriate times to talk and appropriate times to be quiet. Ben also has a girlfriend, Rachel. I'm attaching a picture her mom sent me today of the two of them at an orchard. Ben is so cute when it comes to Rachel.

Batmobile is done and we took Tyler for a test ride to make sure he was ok riding in it. Took him a minute to get in but then he was fine. he also loves the bat we hung up at the top of the "bat cave" he keeps wanting to play with it. Ben on the other hand says we don't have enough decorations and we need more. He's hard to impress.. I told him to get a job and he can go buy more decorations, ha!

10/17/2011

2011-10-18T13:43:00.005-04:00

Over the weekend I was reminded by a recent incident, one I'm thankful I did not witness. You see, Tyler often uses hand pulling as a way to get your attention or show you something. You see, he doesn't really have a way yet to say "come watch me play my piano" so he'll just pull your hand to follow him downstairs and then he'll sorta drop your hand whereever he wants you to sit/stay. He'll do the same thing when he wants to get rid of you... he'll walk you to a door or another area of the room and then sort of throw your hand in that direction and then run in the other direction and/or shut the door behind you, ha! I know I've mentioned it before but it's pretty rare that the boys interact, it's even more rare that Tyler would try to get Ben's attention. One day recently, Tyler wanted to show Ben something so he grabbed his hand to pull him where he wanted him. Ben got upset and bit Tyler! Oh my... for parents who want to reinforce positive interaction on any front between the two of them, this was sorta devastating. Yes, brothers fight, bite, kick, scream, whatever, but when you have two kids that never really interact you so want those rare occasions to go well. Tyler cried and I'm sure learned the lesson, do not grab Ben's hand and therefore don't request to play with Ben. Steve witnessed it and was so upset he was crying, and then when I came home, Ben wanted to come tell me what he had done. Ben was also upset and I was super upset when he told me. We were all just a mess. Ben knew what he had done was wrong and we explained again that Tyler can' t talk and sometimes grabbing your hand is his way of trying to show what he can't say. But on a good note, they were playing together on Saturday morning. We heard giggles in Tyler's room, Ben ran in to tell us they were playing together (as he knows how much we want them to have fun together), and for about 15 minutes this giggle fest went on. We pondered getting up, we knew that Tyler's pull up from bed time was now probably saturated and potentially falling off as they were jumping on the bed and wrestling but hearing giggles was worth the potential extra load of laundry.

My mom's family has an annual fall party. This was Tyler's first year attending. He's came so far and we felt he was ready. Most of that side of the family doesn't know Tyler, typically Steve and I divide and conquer, and one of us will stay back with Tyler and Ben does many of hte family visits with one parent. Tyler did great, was comfortable and had a good time the whole night. He didn't want to go inside. I on the other hand was exhausted from chasing him away from ponds and fire pits but all and all it was great for our whole family to be together.

Progress was made on the batmobile this weekend, we hope to get it completed before Halloween so Tyler is used to the new look and ready to go without issue on Halloween night. Ben is really excited for our theme this year and so are his parents!

For Preschool, Ben attended EMU Childrens Institute. They recently moved into the same building with the Autism Collaborative Center and they now share the space. There was a big ribbon cutting ceremony today to celebrate, in attendance were the EMU regents, board members, ACC staff, Childrens Institute Staff, children and speakers. I was asked to speak on behalf of parents as I was an ideal candidate since I've had a child involved with each organization. Anyway, I was extremely nervous, not only because I rarely do public speaking but because I was having difficulty reading my speech without crying. The opening video was the family of one of tyler's guardian angels. Two typical daughters and a boy with autism. It was such an impacting video that I had to look away as I was already tearing up. Uh oh... this isn't good, I'm already crying and haven't even spoken yet! So as suspected... I made it all the way to "glimpse's" and then had to take quite a long pause before moving forward. The rest of the speech was touch and go as I'd go in and out of crackling voice and tears. Sometimes hearing the truth from the mouth of someone experiencing it, is completely different than reading a statistic on a piece of paper. So yes, I cried, but there is a reason. it's been a tough tough 5 years and I'm so proud of both of my boys and where they are now that I can't stop the tears. So if you are interested, here is what I said:

Good morning, thank you for inviting me. I’d like to start by reading a letter I wrote to my son when he was two years old.

Tyler, thank you for the patience you have given us in the past year as you endured so many tests and evaluations to finally receive that official autism diagnosis. I know that it was a miserable time for you, but believe me, it was miserable for your daddy and me too. It was so painful to watch you struggle through all of those tests when I knew in my heart that you had autism. Everyone just wanted to keep giving you more evaluations, but I so badly wanted to help you. Although it may seem more like work than help, Mommy is doing everything she can to help you. Please know that it takes all of my might not to run to your side and give you the world without having to make you work for it, but I can't.

Thank you for your patience and understanding.It can't be easy to endure 30 hours a week of therapy, diets, tests, and vitamins. It seems every aspect of your life is spent "working" on something. Most two year olds don’t have to work on therapy type stuff during meals, bath time, diaper change or any of the other day-to-day activities. I hope you know that mommy and daddy try to make everything as fun as possible and would never do anything to intentionally hurt you. Mommy's heart breaks every day as I get glimpses of the Tyler that's trying so hard to come out of his shell and I so badly want to meet him. Thank you for your strength and endurance through it all.

Finally, thank you for readiness and eagerness to learn. Your success in the last few months is nothing less than amazing. I'll never forget when you said I love you, oh how I hope to hear that again one day. You have come so far, I look forward to the successes you'll have in the next year. You are truly an inspiration and you motivate me to want to help all of those affected by autism. Thank you for your determination and perseverance.

I want you to know that I will fight like I have never fought for anything in my life, to help you. I will not allow you become a statistic, I will not allow society to generate a path for you based on your diagnosis, and I will not allow anyone into our lives that does not have an open mind in regards to your potential. I accept you today just the same as I will accept you five years from now. I love you the same regardless of the future or the past. You are amazing and you deserve every opportunity. I will make sure you get it. I love you so much baby boy, I WILL NEVER GIVE UP!

About five and half years ago, I gave birth to twin boys. We immediately had concerns about one of our sons, Tyler. He had a distinct cry, rashy skin and feeding problems right away. We began suspecting autism at 3 months. At 6 months we started talking to the pediatrician about our concerns, 9 months we began testing to rule out genetic issues and therapy began at 13 months. For nearly 6 years, we’ve been helping Tyler battle autism while trying to ensure Ben, his twin, had as normal of a life as possible. There are 28 states in the US that mandate autism insurance, unfortunately Michigan isn’t one of them. Families spend in upwards of $50,000 a year battling autism. It takes its toll on an emotional, physical, and financial level but as a parent you hear that early intervention is the key and you do whatever necessary to help your child.

Michigan needs affordable treatment options where families come first. Three years ago, I was diving across the floor many times a day to protect my son from banging his head into the ground. My other son was beginning to show social delays, we were going into significant debt and my marriage was failing. Without the Children’s Institute, I’m not sure where Ben would be. We were delayed getting him into preschool as Tyler’s therapy, treatments and education were costing us so much we couldn’t afford preschool for Ben. By the time that we were able to get Ben into school, he was not succeeding and started to regress, I felt so guilty and incredibly sad. Thanks to the affordability of the children’s institute, we were able to get him into a classroom with amazing teachers and he began to blossom. We had begun to fear Ben may have Aspergers and those fears began to fade thanks to Mr. Gary and Miss Becky.

Tyler has also significantly improved. Through education, diets, therapy and biomedical intervention, and summer camps, Tyler now amazes his teachers and therapists on a daily basis. He can read many words, is beginning to write and uses an augmentative communication device to talk. The autism collaborative center provided an affordable means for Tyler to participate in group music therapy and then he won a scholarship for individual music therapy. Tyler continues to play his keyboard and drum set daily. We believe that one day he may be an amazing composer and we want to embrace this musical gift and potential future.

The ACC also provides a summer camp which Tyler has attended for the past 3 years. With multiple therapists and special education teachers on staff, Tyler has experienced staff working with him during the months he is not in school, so that his learning and social skill set can continue to grow.

I believe there is a reason I had twins, not only were we able to diagnose autism early but Ben is an amazing role model for Tyler. Ben talked in complete sentences very early and is a social butterfly now who loves to be around people. Studies show that children with autism can greatly benefit from interaction and modeling of typical peers. I’m lucky to have that in my house every day. Combining the ACC and the Children’s Institute into one building is a benefit on so many levels. Our autistic children have typical peers to look up to and model after. Our typical children can learn to be mentors but also learn tolerance and acceptance for those who may walk to a different beat. When the ratio is 1 to 70 boys who have autism in the US, it is our social responsibility to ensure that these kids can grow up in a safe nurturing environment with the best chance at an independent and happy future. You are helping by allowing these two groups to work together, hand in hand. Thank you for helping to make the world a better place for both of my sons. The ACC and the Children’s Center have had a significant positive impact on our family. Thank you for allowing me to share my story.

Happy October

2011-10-14T09:29:00.002-04:00

Pardon my French, but Tyler is kickin' ass and taking names in Kindergarten! The boy is "wooing" his teachers and therapists this year, and frankly his parents too. His speech therapist is programming new words/pages onto his dynavox every 3 days and he learns them very quickly. He now loves his dynavox as much as he loves his ipad :) Grandma was trying to play with it one day and he pushed her hand away and pressed "DON'T" lol. He uses it to make requests like more pancakes, juice, etc. He also uses it to label objects. Ye's starting to tell us dates and what the weather is like. At school, he's now routinely using it to answer questions at circle time. He is writing (using his dyanavox so I guess I'd say putting together) 4 word sentences. He's understanding math concepts and syllables. He's enjoying interacting with the typical kids (he's in gen ed 1 hour a day) and showing them his dynavox skills. His fine motor is coming along as well, yesterday he wrote the number 13 all by himself. Teachers and therapists can't believe how smart he is and comment on how sweet and happy he is and he's a joy to work with.

The day that we found out he wrote a sentence we were just astonished, proud, humbled and appreciative. I think it first got a big "WOW'..... then just a relfection of where we all once were and where we are now. WOW, huge difference and so many people to thank. Our pediatrician in Tecumseh listened to our concerns when Ty was just an infant and sent us to a behavioral pediatrician as well as getting us in touch with early on services. The behavioral pediatrician then got us in touch with the UMACC where Tyler started the First Words Project and then the Early Social Interaction Study. By the way, UMACC Closes this month :( Dr. Lord has moved on to another organization. That's when we got our official diagnosis and started working with BCBA Carrie Miller, awesome! Not only did Carrie teach us how to better support Tyler in every day life, but also how ot get him to want to communicate with us, and how to play with him, get him to learn, etc. But she introduced me to the wonderful Amy Sanderson who pathed the way to a better education for Tyler. He started school at 30 months old, 5 days a week, 5 hours a day. Amy lead me to Kelly who got us into see Carol Fast, Ty's amazing private speech therapist. Carol, via her IPAD, showed us that Tyler knew how to read and told us to get moving on an assistive technology meeting. Some of Tyler's guradian angels:) got him an IPAD and we were able to use video to show the school leaders how capable Tyler was using electronics and how it speaks to him and how it could benefit his education. Kelly helped prep me for that meeting.... and voila.. introduction to Tyler's dynavox. The speech therpaist couldn't keep up at first with programming. We are firm believers that the dynavox and the ipad are the reasons that Tyler was able to move up to a higher functioning classroom setting.. which brings us to where we are today. Not sure where we'd be without all those people leading us down the right path but I'm more than thankful. Ty's doing awesome.

And Mr. Ben has a girlfriend :) Her name is Rachel, very cute little girl who is the daughter of one of my friends. A fellow runner, who has 3 children, the oldest boy has autism, a typical child and then cutie Rachel who is in Ben's class. We have his parent teacher conference next week so we'll here more about how he's doing at that time. We get a daily notebook sent home with Tyler so we are just kept more up to date as the classroom size is significantly smaller and it's easier to communicate with each parent than in Ben's class.

We are becoming good friends with people in our neighborhood and overall just creating a really great circle of support in our new home. We are very happy that we moved and hope our landlord will let us extend our lease. Other than that we are just gearing up for Halloween. Ben picked the theme, long ago, Batman. Ben is batman, Tyler is Robin, Steve is the joker, grandma is the cat woman, the babysitter is going to be batgirl and I'm Poison ivy. We are hoping to decorate the front porch like a batcave and are hoping to find a way to turn our radio flyer into the bat mobile with Robin at the steering wheel. Tyler doesn't trick or treat, in fact he's never even had candy, he doesn't like it. So he just rides in the wagon and plans on the ipad while Ben trick or treats. Will be interesting to see if we are judged at all, in past years, we get a few snide comments about Tyler having an IPAD and being so young. We live in a new neighborhood now and being that Ann Arbor is very open and understanding, I'm hoping that it's just accepted as it helps us all have fun on Halloween as a family.

Love to all,
xoxo

9/8/2011

2011-09-08T18:58:00.002-04:00

Let's just say that the transition to Kindergarten has not gone as smoothly as we would have liked. We've had significant problems in the transportation department for Tyler. Bus info was never sent to us, after calling dispatch it was because the preschool gave them teh wrong addresses even though the form I filled out in the spring clearly had the correct addresses listed. Pick up our house, drop off at Annies. So Ty gets picked up at hour house at 8:13 and Ben gets picked up at a stop on a different bus at 8:25, they go to different schools. The plan is for Steve to get them on the bus so that I can get to work by 8 so I can get out in time to pick them up. We pay to have Ben in extended day kindergarten and there is no bussing for that as it's considered day care. So we have TYler sent to Annie's so that in case I couldn't get home in time (we didn't know bus times util 2 sdays before school) that Tyler was in good hands or in the case that I was out of town or Ben and I coulnd't get home in time, etc. TYler had somewhere to go. Impossible for me to pick up both boys at the same time at different schools. So anyway, firs tday, no bus show for Ty. Steve dropped Ty at school and I met Ben's bus at his school to take him to class and get him adjusted on the first day. After school, this is where my nightmare began... picked up Ben on time. We went to Annies to pick meet bus for Ty. About 10 minutes after his drop off time, I got a call from Ty's teacher telling me he'd be late. The bus had just picked them up and they didn't have any informatioh for Tyler. She gave them our home address... at that point I thought it was our current address. I freak saying I'm not at home, I'm at his drop off location, which I had just confirmed again with dispatch that mronign after calling them with my concerns that the bus never showed. She said, oh, well let me call transportation. I said ok, I'll head home if that's where they are going. Stressed at this point trying to figure out where Ty is and when he'll be home, the teacher calls me back. She says that she can't get a hold of transportation (rings busy) but that they have my address and he's on bus 15 ande he'll be home at some point. That's when we realize, she gave them the address faxed over on the form from preschool, not the one I filled out, but the one they kept getting wrong back in January on for all his forms.. Um, it wasn' t Annie's or our house. So now I'm freaking because I don't khnow where TY is, where he's goijg or how to get him. She said oh, let me call transportation. Just keeps ringing busy. She calls me back (awesome teacher) and says she snagged another bus and used their radio to make sure Ty's bus had his proper address. She said there was a lot of radio traffic but the bus driver didnt' know where that address was and other drivers were trying to assist and that's all she knew. So at this point, Mama loses her composure..not on the teacher of course she's great, but at the situation. I was royally pissed off that I had talked to transportatiohn 3 or 4 times prior to school start and even that mroning to make sure it was right and at this moment, I had no way to go get my son or even know where he was and the driver didn't know where he lived. Steve as on his way home and knew of my worry, he somehow flagged down a busy near our house that happend to be Ty's and said I'm Tyler sdad, do you have him? The bus driver said yes, relieved to find a parent. Next morning... no bus. Mind you Ben's bus is going great! I was not at all comfortable with Tyler riding the bus home so I pulled him out of school early so I could pick up Ben on time too. So with both boys happy and safe with Mama, I get a call from the director at Annie's at 5 p.m. She said she just wanted me to know that the bus had just came to Annie's and tried to drop off a kid claiming it was Tyler. Luckily she knew Tyler very well and said, that's not Tyler. The driver insisted it was Tyler and she said, no it's not, and you aren't leaving here until you tell me where Tyler is. Driver called transportation and confirmed that Tyler was picked up by a parent. (Driver knew this because the Teacher had previously told them). So she said ok, who is this kid. The driver didn't know. He was a non-verbal child with autism. She said you need to open his backpack and figure it out. he said he coulnd' t open personal belongins. She said, ok I will. She found out who it was. She gave me the childs name and I told her I knew the child and needed to get a hold of his parents. I called a friend who called the teacher who called the parent. I called Annie's back to see if the driver had told her where he was taking teh child. She remembered the street name so I called the teacher to tell her what I knew and at that time I found out the child made it home safetly. ABSOLUTELY UNACCEPTABLE that a nonverbal child with autism was almost dropped off at the new location. And the director at Annie's told me that she just hired new people, had one of htem got "tyler" off the bus,other than name, they would not have a clue how to reach his parents or where he belonged. Furthermore, imagine of one of these kids, who can be somewhat difficult at times, were left in teh wrong hands. Just frightening. So anyway, that' s what we've been dealing with this week.

From the kids perspective, Kindergarten is going great. Ben knows a couple kids in his class. I asked him today if there is anytihng he doesn't like about K and he said no. Yesterday when I picked him up he was cryihng. Teacher said he got frustrated with teh sleeves of his coat but worked through it. Good, toughen up kid. Sometimes he is overly emotional about the smallest things, she's gonna be good for him!

Ty's teacher and speech therapist are both really excited to be working with Ty. Day 2 notes said that when speech was working with him, he pointed to a bus, then went to a # chart and pointed to #15 and then pointed to the bus's outside. Um yeah kid, that was the number of the bus that you were stranded on yesterday, so smart! She aid she knows she wasn't telling us anything but they were so surprised at how smart he was. Very impressed! Today she told me that speech programmed a bunch of new info into Ty's dynavox and she only needed to show TYler once and he got it all. She said he was even using it to joke around with speech. She asked himhow many cookies he wanted, he waid 8, she said you can't have 8, 1 orr 2. He pushed 8 again and giggled, she said, no one or two and he chose 2. We are so lucky, she was a big advocate for us last year to get him some Assistive technology but she didn't khnow him or work with hij then, just took parent and teacher testimonial. Now she's his actual speech therapist and just super excited at his potential... me too :)

Other than that we are just adjusting to the new schedule and me trying to get in my full timework hours and pickinmg up the boys each day from school. Never realized how many errands and stuff I could get accmoplished until now that I'm not getting a lunch hour.

Oh, we got an email from teh Judson Center about an ABA scholarship... we are going to apply, I thinhkh we'd only have to pay around $400 but there are 15 hours a week of home programming. We hope if we get it, to use it towards TY's independencec skills. Potty traihihng has been a struggle for 2 years, dressing, teeth brushing, hand washing, etc. The skills Ty really needs to move forward in his education. Wish us luck.

xoxo
Sorry for spelling errors, in a hurry and didn't have time to correct

August 18th

2011-08-18T10:18:00.005-04:00

This has been the fastest summer ever! Tyler's summer schedule was a bit different this year. Last year we had the option of morning or afternoon summer school so we chose afternoon so he could go to Splash Camp in the morning. This year summer school was morning only so that limited him a bit. We were however able to get into Splash camp for 3 weeks, yeah. Today is actually his last day. We had been on a wait list but someone cancelled for those weeks so there was an opening. Given the schedlue this summer, we decided to pull Tyler out of his typical day care center. He used to get bussed there after school during the regular school year and did fine since he was only there for a few hours at most, but when I projected his summer schedule he was going to be there for quite a few full days. The facilty is large with many classrooms and of course mostly full of typically developing kids and the caretakers are young with little special needs experience. Don't get me wrong they are awesome with Ty it's just that I was already anxious about it and hten his first full day did not go well. In fact we had him there for a week and by the end of the week we were all in tears and we decided to make a change. I guess Tyler was upset about something, they weren't sure what and therefore weren't able to console him and he got so upset that he eventually wore himself out and fell asleep. Unless he's sick it's very unlike Tyler to take a nap, in fact, he has sleeping issues and without melatonin is bouncing off the walls well into the wee hours of the morning. It broke my heart to think of him struggling like that and not having a way to communicate to them his problem and them not able to read him enough to be able to figure it out. Anyway, long story short. We found a special needs nanny on care.com. She is a college student with a major in therapeutic recreation and a minor in american sign language. She's been with us now most of summer and in fact today is her last day too. I'm not sure that this was the best decision for Ben, however. Ben's been in a daycare/preschool situation with other kids since he was 6 months old. He is a social butterfly who loves to be around other kids. We couldn't afford the nanny and a care facility, heck we could barely afford the full time cost of one, so he's been home with the nanny too. We figured that half of the time Tyler would be in some sort of therapy, camp, school anyway so that would give Ben the attention he lives. I do think he struggled a bit because he hasn't been around other kids this summer. He's been very emotional. We did get him into safety town which was great because there were two kids in his class that will also be in his Kindergarten class so it's nice to make that connection early.

I've also joined the PTO for Ben's upcoming elementary school. I just wanted to be able to do something for Ben as most of our school related decisions and meetings have also been prioritized by Tyler's needs. We actually chose our house/neighborhood becuase we wanted Ben to go to this specific school. Anyway I was voted in sometime in June and we just had our second meeting this week. I'm the PTO Secretary and looking forward to being involved with Ben's educational and social life:) will help with some of my mommy guilt that's for sure.

As for Summer, it's been going great. Tylers still non verbal but is really realy chatty. we've stopped b12 and speech at this point and Ty is still chatting away. He's also really getting creative in terms of communication and for hte most part is very patient if you aren't understanding him. There was a day that i had to take both boys to the grocery store. May seem normal to you but trust me this is pretty rare. I may run into the grocery store to pick up an item or two with both kids but never a full on shopping trip. But on this day we had so much to do I had no choice. I won't lie, I was anxious. So I brought a bunch of supports for Ty, Ipad, books, etc. He sat in the cart no problem, yeah! Ty gets confused in a big open space and those lights are just horrific for the guy so putting him the cart is the easiest way to keep him happy and safe and let me get the shopping done. So at one point during shopping, he kept pointing at his bag full of goodies. I go through each one asking if that's what he wanted but it wasn't working. Finally I gave up and went back to shopping. Ben and I are looking at food and I'm hearing Tyler push a certain item in his Vtech Bugsy book repeatedly. awesome books, the pen talks to him. I had tuned it out but finally it caught my attention that he was pushing a picture of juice so the pen kept saying "juice, juice, juice, juice".... then I had an aha moment.. that's what he wanted juice!!! which was in the front pocket of his backpack, no problem little dude.. I gave him his juice and he was good. He flipped through his book to find that specificially so I'd get his juice. He does this type of stuff often, he's very creative and resourceful!

Last night he was having a hard night. He's gotten into this ritual lately of needing everything under the sun when he goes anywhere or moves from one floor to another in our house. He'll point at one of his toys and then sort of do this big circle in the air with his finger which means I want ALL OF IT... um no kid we can't move your bedroom to the dinner table. Had a stand off one day trying to get him in the car for splash camp over this. Anyway, last night we actually couldn't figure out what he wanted. We had already gathered his blankets, books, ball, and whatever else he pointed at. It always has to be mom that carries him to bed, he won't walk and half the time I'm buried with toys, Dad was helping carry more stuff. So then we got him into bed, he jumps back up and heads downstairs, ok we must hvae forgotten something. We go with him. He was pointing to the top of the pantry at the battery case... ahhh... the leapster was in there. Must be the nanny "hid" it when it ran out of batteries (we should seriously buy stock in batteries, it's like water in our house"...so luckily dad had came up with batteries after work, yeah dad! So I replacedthe batteries and we took it upstairs..got him into bed and then he jumps back up to head downstairs. I finally said enough, no more, your room is packed with stuff, go to sleep. He then gets upset that I raised my voice and starts to cry, boo. Sorry bud but honestly Mommy can't keep hauling the entire house (and him cause each time I have ot carry him back up) to your room. it's time for bed. He lies down tears still flowing.. i offer a few tickles and now giggles, yeah.... he starts to close his eyes, i'm just sitting next to his bed watching him. he's fine if I leave but I was enjoying being by his side.. he opens his eyes and looks at me and I smile and then he smiles and closes his eyes... awesome!!! when you have a non verbal kids who lacks appropriate emotions at times and certainly has limited facial expressions and eye contact.. when he looks right at you and smiles... it's like a typical kid saying "I LOVE YOU MOMMY!!"... sorta just melts your heart.

So we've been keeping busy this summer. We went to Sandy Pines for 4th of July with the intention of going to Michigan Adventure but the boys both got Strep Throat, boo. We didn't let it ruin the trip though, antibiotics and some ibuprofen and we had lots of fun at the water park, beach, and pools. We even made a trip to South Haven. The boys really like it at Sandy Pines. I'm attaching the view from where we stay. There's so much for them to do, and Tyler now loves the golf cart rides, a far cry from 2 years ago where he'd go crazy if we stopped for any reason. We are hoping one day to have a membership to Sandy Pines.

So that's about all from the Ty update...looking forward to a new school, teachers, therapists next year. He's moved up to level 2 and I couldn't be more proud of him. Happy that Ben will be back at school and hanging iwth his friends and that I can be more involved. My boss is going to let me work a flexibile schedule so I can be with the kids when they get out of school. Not only will this help with our child care costs but it also allows me to spend more time with them during the week. On the family side of things, are doing what we said we'd do... time to relax more and focus on the famly so we've sort of stopped pushing so hard this summer to work with Ty and just hanging out more having fun as a family. The boys were actually wrestling together last night, not just Ben tickling Ty and him laughing but Ty wrestling back. He didn't used to know how to do this, he'd get frustrated and try to hurt Ben, but last night they were having so much fun. Ben knows it makes me happy to see them play togehter so i'm not sure if he doesn't to mak eme happy or if he does it because he likes it, hopefully a little of both. So financially I think we are starting to move in the right direction, cutting down on child care costs will help ALOT..... and there is another prospect we have right now that hopefully I'll be able to give some good news about soon.

On top of all that, i'm seriously considering going to Grad School and getting my Masters in Marketing & Communication. We'll see how everything comes together.

Love to all,

6/6/2011

2011-06-06T14:13:00.005-04:00

The school year will soon be coming to an end and our little guys will be moving on to Kindergarten. I can't believe we've been battling autism for 4 years now. Wow! Initially we started this blog because Tyler was in so much therapy, studies, etc. it was hard to keep therapists and family up to date on everything that was happening. As intended, things have leveled off a bit. I think our story is similar to so many others. Suspect autism, get a diagnosis, hear about amazing recovery stories, fight with everything you have and hope you are one of them, exhaust all your resources and energy, and then some years later, settle into acceptance. I hear this from many parents. We just talked to some friends about it this weekend. Although we had hoped Ty would recover and or improve to the point he could be considered high functioning, we knew his chances were lower than some others. Ty was diagnosed with moderate to severe autism at 18 months. He has severe apraxia, he is completely non-verbal and struggles to eat enough food to keep his energy up if he doesn't have somethign to distract himself. He doesn't sleep well, he doesn't interact with peers well, he isn't potty trained and he can't even fully dress himself yet. He can't write, doesn't care about coloring, and he's obsessed with spinning objects such as cups or frisbees. What's crazy is that this description of my guy could be applied at 18 months and today. This is not to say that he has not improved dramatically and that we've given up all hope, it's just to say that we have accepted autism as a part of our lives, forever. It will be part of our lives. That's a really really hard thing to accept and to find peace with. So although it seems to be something that would be simple, it's not. Because the guilt that comes with attempting to accept is overwhelmingly painful. There are still days when I am workign with Tyler on speech adn I see him pull on his mouth and stretch out his neck as if he's trying with all of his might to get out the word and can't. IT BREAKS MY HEART! Then I think, why on earth did I cancel private speech??!!!! What if we are only one speech session away from what seems impossible.

I've often thought about how much I'd love to turn this blog into a book, even if for just our immediate family. So that one day Tyler can see how hard we fought for him and loved him, so that Ben can have an understanding of how I was so often conflicted with guilt for not giving him as much attention but that I love him so much. I think about this blog and remember very clearly intentionally leaving out some of the ugly stuff. The blog was for therapists and family to learn about Ty and sometimes the heartaches and ripple effect autism can have was just too much and too personal to put into a public blog. I think if I turned it into a book, I'd add those all back in. The pain was so vivid that I remember it all as if it were yesterday and thinking about it makes me cry. We've lost friends, we've lost family, we've lost what was once a great marriage, we lost our dreams, our savings, our credit, we lost our home, we lost our dog, and at times, lost all hope. I realize everyone has hard times, absolutely, and I realize there are plenty of people out there who have it far "worse" than I do. I just think that many close to us would be surprised to hear about all of those ripple effects.

One of the biggest reasons I'd like to read the book, to remind me of how hard I fought for his recovery and that I did do everything possible, that it's ok to relax and focus on teh family that it's ok if he's not in speech therapy because he gets it in school. Ive been feeling incredibly guilty about Tyler not getting into splash camp this year, we are on a waiting list. I was waiting to apply until we found out what the summer school hours/schedule was this year and to hear back from the ELKs regarding our grant application. we couldn't afford it quite honestly and sure I can add more to the credit card debt but making all those payments is what is killing us now and preventing us from being able to move forward as a family. Steve and I agreed just over 4 years ago that we'd fight like nothing we've ever fought for, set our marriage aside to help Ty, so we could intervene early as all the researchers recommended. We agreed that around age 5 we'd slow down and recuperate. That's what we are doing... it's hard. Ty's reinvented fascination with cups and spinning has me a bit sad, but I'm not stopping him. I am learning to be at peace with just letting him be Ty. At some point I just have to learn it's ok for him to have autistic traits because after all he does have autism. what I care about most is that he is happy, healthy, and has a way to communicate. He is all of those things. I want to read the book to remind myself that i've helped him have those things. He can leave the house now and be happy about it. He can eat by himself. He can use a computer to talk. He can go to a grocery store without melting down (ok most of the time), he'll try new food, he'll play outside and stay near by. He understands most of everything you say to him. He's a very loving happy boy who is moving up to a level 2 classroom next year. I can dream of the possibility of a level 3 by the time he's in middle school and the possibility of friends, perhaps a job and some independence:) That's the difference from 18 months old. He was not a happy boy, banging his head against the ground, the chair, melting down, etc. we've given him happiness! Reading the book would help remind me to let it all go, we did accomplish our goals.

Look at the happy faces in these pics. Have we done well as parents? :) I think so. So once again to all of you who have stuck by us through thick and thin, fights, tears, etc. THANK YOU!!!!!

xoxo

2011-05-10T09:24:00.003-04:00

Happy Spring! We are loving this warmer weather. For the first time, Tyler is really wanting to play outside. Usually Ben wants to play outside but Tyler wants to stay inside and it can get tricky if there is just one parent home, especially now that we don't have a fenced in yard! Anyway, we are really enjoying time in the yard, can't wait for the weather to get warm enough to get out the water slides. The boys are also really liking bike rides this year. Ben finally had the courage to ride the bike that attaches to dad's bike. The whole time he kept saying "this is awesome" now he asks all the time if we can go on bike rides. I pull Tyler in the buggy behind me and anytime i stop, he gets upset because he also wants to keep going.

Had a great moment in the car today. Tyler's ipad is on the fritz and he usually plays with that on the way to school so today he was using his Dynavox. He pushed "old macdonald" so i started singing and then I paused when it came time to choose an animal, so tyler pushed rabbit so I sang it with a rabbit, then he pushed snake, etc. etc. Ben and I were singing along while Tyler chose the animals. It was so much fun to have Tyler "talking" and participating with us in the car.

We've also noticed Tyler's imitation/imagination skills are improving. lately he's been imitating a frog, bunny and turtle. We praise him often and make this a lot of fun for him in hopes we can get him using his imagination more often. Annie's (his second school) is noticing how much more interactive he seems to be in the last month or so. I've even noticed Tyler take Ben's hand a few times to lead him somewhere. All and all his social skills seem to be stepping up a bit. He's also beginning to eat some foods that he had elimianted from his diet not so long ago like pizza, spaghetti and yogurt, yeah Ty! Having a limited diet and then a picky eater can be tricky.

Ben's going to see his kindergarten classroom/school for the first time today. He's looking forward to it but says he's going to miss his girlfriend Brylee:)

Other than that we are trying to get Ben excited to be the ringerbearer in a wedding. Right now he says he doesn't want too. We've been bribing him and telling him how much fun it's going to be. Oh and as you can see from one of the pictures, he's practicing his dancing skills as I tell him there will be a big party at the end where he can dance and have cake!

Ok that's about all from the Cretsingers, the boys are doing fabulous.

xoxo

3/17/11 Happy St. Patty's day

2011-03-17T10:10:00.002-04:00

The boys had a spectacular birthday! I can't believe they are already 5 years old, oh how fast time flies by!

Ben is in love with his new Lego Harry Potter Hogwarts Castle and Tyler got a Toys Story Hot Wheels kit that he loves. They are looking forward to their birthday party this weekend.

I haven't posted in a while so I'm forgetting what I have already mentioned but for those of you who do not know, we stopped private speech. We have spent nearly $100,000 battling autism over the past few years, we've given up our home, and the small town community we once thought was our dream to be somewhere that Tyler could get the services that he needs. the road to kindergarten for Ty requires a lot of meetings. During one of those meetings, I had asked the team about TYler's chances of ever being able to talk (verbally) and they responded that the likelihood is pretty slim. Ty's been in speech since he was 13 months old, now at age 5, he still isn't saying any words. Babbles (yeah) but no words. Luckily his dynavox has helped his communication tremendously, in fact, I attribute his IPAD and Dynovox as being one of the main reasons Tyler has been so successful this year at school....

so successful that Tyler gets to move up to a Level 2 classroom next year, YEAH!!!!!! There is a lot involved with the road to kindergarten for a child with special needs. I had no idea the meetings, observations, meetings, etc. that would be required. Tyler has made tremendous progress this year and I'm so glad the team agreed that a level 2 classroom is best suited for him. Now, let's set the goals high and perhaps he can move to a level 3 the following year :)

Ann Arbor only offers half day kindgarten, so we are going to opt to pay for the extended day option for Ben. Tyler will go from 8:45 - 3:45 since he is in special education. This way both the boys will be bussed to their after school care (annie's) and arrive at the same time. I'm excited to have them together even if it's for a only a couple of hours. I had round up for Ben earlier this week adn meant the extended day option k teacher for Ben. I really liked the way they described the extended day option. It's considered child care however, the teachers reinforce the curriculum through other activities and I think ben would love that environment. I thought we'd finally be done with all of this expensive child care stuff, we chose the most economical schedule possible with one of us still going in late to work so we can drop off the boys and not have to worry about before care costs but it's still close to $1000 a month when we add up their after school costs and Ben's extended school day option (which was cheaper than the child care facility by the way). One more year and maybe we'll get back on our feet, lol.

Ok that's all from us, we are on the road to kindergarten :) I have an IEP scheduled for Tyler next month with the team from his new school and his current team (3 hour mtg) to write up an IEP for next year and work on transitions. I'm really really really happy that he is going into a level 2 classroom.

xoxo

1/8/11

2011-01-08T09:02:00.002-05:00

Wow, how time flies huh! Over 3 years ago, Steve and I made a commitment to Tyler that we would fight with all we had to help him battle autism, early intevention is key right? We'd set aside our marriage, our wants/sometimes needs, to do what we needed to do to help Ty. In hindsight, I can't imagine where Tyler would be if we hadn't made that big of an effort. He certainly has a long road a head of him, however he's happy, he's found a way to communiate, his body seems to be healed to the ponit where he can eat freely and without objection. All and all that's what is most important, he's happy, he can be well nourished, and he can communicate. But I would be lying if I didn't admit that I had wished for more./ I really wish that Ben and Tyler had a better relationship. Ben told us the other day how he doesn't like Tyler's autism, honestly we don't either! I also wished he was talking by now, yeah, he has a way to communicate and hopefully by the time he's an adolescent, if he's still not talking, he'll have a more socially acceptable device like a cell phone, that also can act as his method of communication. Those would be my two wishes if I could have had just a little bit more progress.

Compared to where Tyler was at 12 months and 18 months, he's amazing. We can go outside now without him dropping to the ground to bang his head into the concrete, walkigng the dog was incredibly stressful in our house. We can set food at the table and he will freely eat on his own with utensils and not being strapped into the chair. He's wanting to be around people and participate in group activities more. He is able to go to restaurants and out in large public places without melting down. Our life has gotten signifantly easier in the past few years as a result of these improvements.

So as we near Tyler's 5th birthday, and also the end of that "window" that everyone talked about for the timeframe that intensive intervention would make the most impact. I'm ready to slow down. Good thing because I'm pretty sure we are out of steam, lol. Doesn't mean we are going to give up, not by any means. We'll still continue with private speech, we'll still go on to music therapy (update on that in a bit) but we are ready to slow down other efforts that cause us so much strain. We are officially done with B12 shots, the stress that it's creating and the cost are just no longer worth the benefit. We will continue to give him methyl b12 orally. We also have cut out quite a few of his supplements not only for savings but we aren't really wanting to give him anything that's not helping so to speak so we continually testing by taking out certain items and those that we don't see any sort of negative impact, we stop all together. Last but not least, I'm going to relax more at home. I feel pressure to make each interaction with Tyler some sort of learning opportunity, I know this is a result of a study and for very good reason has helped so much, however, it sometimes makes getting life accomplished hard and causes arguments in our houselhold. I'm done with feeling that pressure. I guess i look at it as worst case scenario, if Tyler never improves from this point (which is impossible cause he's such a smarty pants), I accept that fate. I feel like it's time to refocus on our whole family and my marriage. Time to get us all happy again as one big family and let the schools and therapists do their magic with Ty.

As most of you know, we are moving in 3 weeks. That will likely be pretty hard on Ty so we are strategizing about ways to support him through the transition. This is a big step for us. One that made me give up the last piece of the future I had once dreamed of as well as our credit rating, but more importantly it's the first step in my new dream, a happy, more relaxed, family. We will be renting a house, very similar to our house now, in a nice neighborhood with a little park 2 blocks away. We researched options a lot and chose these area (and had to fight a bit to get the house!!) because it's in a township so that rent is lower since taxes are lower. We could get a 2 bedroom condo within the city of ann arbor or a 3 bedroom house within the township for the same amount of money. We also researched schools for Ben, Tyler is placed upon his need but Ben will go to whatever homeschool is assigned to the area. The school Ben will be going to is the smallest elementary in ANn ARbor and each parent I have talked to sang it's praises. Ben struggled with the transition to preschoool and I wanted Kindergarten to be as small as possible. I felt really good about being able ot finally factor Ben into our decisions as well.

That's all from us, although January has been a horrible month for us in terms of finances, emotional and soon to be physical toll, even work has been really difficult, we know that there is light at the end of the tunnel:) I am going to welcome it with open arms. THanks a million times over for all the love and support from family and friends who have given us more over the past 4 years than we could ever give back. We could not have done it with you and your dedication to Tyler and our family is so appreciated.

xoxoxo

Melissa

12/13/2010

2010-12-13T15:14:00.004-05:00

We worked really hard to get these pictures, impossible to get both boys looking and smiling. There were a whole of tickles and hidden parents in these pics trying to get a good shot, we got a few good ones:)

Things really seem to be coming together on the home front and making changes to help simplfy our lives a bit. It's been a hard road but I feel like we are definetly on the right track and making good decisions.

A friend sent me this e-newsletter from her local doctor's office. I thought it was interesting. As you all know, we believed Tyler had autism from the beginning but he did get worse after 12 month and 18 month vaccination. Remember that video I posted on a previous blog, http://tylercretsinger.blogspot.com/2010/01/blog-post.html It was such a deliberate "ma-ma" that came out....just before 18 month vaccines. I just had to watch it again, over and over, I tear up each time. Oh how I wish I would have listened to the minority, from day one I had concerns about Tyler, and that's a warning sign for parents, those kids who show just a bit of abnormality, need to avoid as much toxins as possible. We have a guy at work, has twins, one boy and one girl, they just went in for their 18 month (maybe 2 year) vaccines and the boy had a serious reaction to the vaccines. I told him things he could do biomedically to help his son recovery as well as signs to watch out for moving forward. That's the thing, everyone listens to mainstream doctors and media until something happesn to them, they think we are all crazy until it happens to your child, you see the changes, you feel the pain of it being a decision you made. It's frustrating. So this article is even more frustrating.... this is the bottom line

What's happening with vaccines NOW?

Drug companies are relying heavily on the future of vaccines. Why? Because health care costs are high and changes are coming to bring those down. This will include less medical imaging, less lab tests, less doctor visits and possibly restricted drug sales. A survey was conducted before the health care bill was passed. 45% of medical doctors said they would leave medicine if the bill passed. That's a lot! With less doctors, less prescription drugs will be sold.Drug companies see that their future is not in drugs because of these reasons. In order to bypass this imploding system, they are relying on vaccines. When a vaccine is made, then mandated by law, everyone needs to get it, not just the sick. This bypasses the medical doctors. Testing? Not necessary. It doesn't matter if you are sick or well. The profit center expands from just the sick to everyone.

At a recent seminar that we attended a doctor spoke about his experiences with vaccine-related injured kids. He lives in a part of New Jersey that has the highest rate of autism in the country. In the last three years, he has seen over 200 autistic kids. Each one was fine until they were "given that one shot". He finds mercury in all of them. (Vaccines have mercury in them except if you request a shot without it.) The autistic kids become more social, start talking, need less external stimulation, etc. when the mercury is cleaned out of their body. (We do this also.) The doctor has done three studies for the National Institutes of Health (NIH) and his dad has worked for the NIH for 15 years. He said the NIH is "more corrupt than the entertainment industry." Example: When you google "vaccine+autism" or "mercury+autism" the studies that come up show no link s between the two. This is criminal. Talk to moms who have autistic kids and they say "Junior was fine until he got that shot." The other main source of autism is from mom's mercury fillings while she was carrying the baby. The mercury was transferred to the fetus in the blood or through breastfeeding later. There are studies on this to prove it. Here are 21, all referenced. 21 studies. We need our dentists to stop using mercury fillings. Feel free to tell your dentist, "No mercury. Thank you." If he says there is no harm from them and the American Dental Association can prove it, find another dentist. We have many good ones to recommend. One of our patients, a new mom, reported to us that her pediatrician said there are 96 shots in the first two years. That's too much formaldehyde, mercury, and aluminum for any size human being. Even if the vaccines were not toxic with poisons, the theory of vaccination alone is not proven.See here that polio is historically directly related to pesticide production. The same website shows smallpox increases with smallpox vaccination.The site here has 26 graphs that show how vaccines have no effect on the disease it is supposed to cure. It also shows how many diseases had been on the decline for almost a century before the vaccine was even introduced. These include scarlet fever, whooping cough, rheumatic fever, tuberculosis, tetanus, measles, and more. The reason why these diseases started to decline since the 1800's is because our sewers are now closed and we use soap more. That's right, showers and toilets are medicine's greatest advance ever. Beyond that, eat real food, not food products that look and taste like food. Use whole food nutritional supplements, not the chemicals labeled as vitamins. We can help you with that.

We have supplements to help your immune system if you choose not to get a flu shot. The decline in sick days is measurable and significant. We do really well with people who are "always sick". They go through a winter with only one cold instead of being sick for four months straight.

If you know an autistic person, bring them in. We'll find the mercury and remove it. Also, vitamin D plays a huge role in getting kids to talk and reversing autistic symptoms. Reliance on medication and vaccines is a problem. Drugs are good for saving lives during emergencies. The chronic degeneration of a body caused by American food needs to be reversed with nutrition. Call us to get your health back!

-Dr. Schmidt

:(

2010-12-03T12:26:00.003-05:00

It's with great sadness and frustration that I tell you that autism insurance bill did not make it through, it was never brought to the senate floor for a vote :( It's been a hard week for us for many reasons but this is just a huge hit. I had tried nto to get too excited but I couldn't help but get caught up in the what if's. Maybe we wouldn't have to give up the last piece of the life we had once planned, maybe if I can get Speech and Behavioral therapy covered, I can afford two music therapy session a week for Ty. Maybe we can get Ben involved in more extracurricular activities, maybe, maybe, maybe....all got shot down with this horrible news.

I was sad last night when I got a feeling it was going to get voted on and then this morning when I found out for sure it didn't make it, well I just couldn't stop crying and just now I've found myself in just a dull melancholy depressive state, so I was delighted when I just got the following email from Ty's teacher:

"You should see Tyler with his device! He is scrolling through multiple pages to find the pics that he wants, and is using it to do fill-ins when I'm reading the story! This is fantastic!! Will try to get some video footage for you to see at some time :)"

Thanks little guy for putting a smile back on my face and for a friendly reminder that you are worth every tear, every penny, and every future battle we have to face on your behalf. XOXO baby

2010-11-29T09:34:00.003-05:00

Please contact your local senator today! The autism bill has one last chance tomorrow to make its way through the senate, please let them know why you support this bill. Premiums will go up less than 1 % but the overall life long savings is huge due to the advancement that can be made in this kids with early intervention, they will require less services from the staet when they are adults. Call, email, do whatever you can. PLEASE! I cannot begin to tell you the emotional, physical, and financial burden we've had to deal with because of the lack of insurance coverage. We need your help!

We worked quite a bit with TYler this weekend on using writing utensils. We looked for creative ways to get him interested. A friend loaned us a stylus with a sponge tip that can be used on the IPAD. Attached is a picture of Tyler which shows him using it. one of his goals on his IEP is to write a few letters. I'm thinking if I cna get him to master this skill with electronics where he is motivatated, we can transfer it over to pencil and paper. I Also puleld back out an old leap frog toy where you draw shapes, he still needs help but he's very motivated, keeps bringing it to me to play with him. In general, he was very much a mama's boy over this Thanksgiving break.

Gotta go, please call and advocate for insurance.

11/23/10

2010-11-23T13:32:00.005-05:00

Here is some more info on Tyler's goals for this year:

Goal: Improve visual-fine motor skills to increase independence and participation in classroom activities as measured by progress int eh following objectives:
1. Tyler will trace TLE using a small piece of crayon
2. With sciossors (left handed), Tyler will cut a 2" line independently

Goal: will increase independence and participation in activities of daily living, self-care as mewasured progress on the following objectives:
1. Tyler will stay dry all day
2. Tyler wil complete arrival and departure routines

Goal: Tyler will improve his social behavior and play skills:
1. Tyler will follow a peer and imiate their behavior
2. Tyler will make requests to peers
3. Tyler will respond to request by peers.
4. Tyler will initiate a social bid to a peer by giving them an object or by using a communicative gesture (tapping on shoulder, taking hand, using voice output communication).

To improve listener responder skills:
1. Tyler will identify two compontent noun-verbal and verb-noun combinations
2. Tyler will follow directions to "go get" and to "give to" various people and objects in his environment

Goal: Tyler will improve expressive communication:
1. Tyler will use voice output communication or PECs to make requests during activities through his day.
2. Tyler will use voice output communication or PECs to respond to questions, a) what b) where c) who
3. Tyler will use voice output communication or PECs to make choices/requests, to respond to questions, adn to indicate he wants a turn during group and paired activities.
4. TYler will produce sounds within his repertoire on command, imiate vowel/consonant sounds, and ebprompted to produce word approxmiations.

Goal: Tyler will improve his pre-academic skills related to reading and mathmatics
1. Tyler will answer questions or use phrases related to a story.
2. Tyler will sequnce three pictures to retell a simple story
3. Tyelr will improve his numerical concept developmetn as demonstrated by giving a requested number fo items from a group of ten/telling how many items are in a group up to 10.

He has lots of work to do :)

11/21/2010

2010-11-21T20:58:00.003-05:00

I really wish I had more time to update the blog. So many good things are going on and I just can't find time to make updates.

Tyler is fantastic lately, he's trying new foods, making all kinds of sounds on demand, and thriving in school. He's really a delight to be around lately.

In terms of speech, I swear he said the first part of "uh, oh" yesterday. He'll say Ba ba ba ba on command. I spent $80 dollars last year on an advocate to have just one consonant sound be added to his IEP. Now anytime you ask, he'll say it, he'll also say mmmmmm and ma ma mam and then point at me. Yes my heart melts each time. He'll say dada sometimes too. He knows who we all are.

I am so thankful for our IPAD, it really helped open up a lot of people's eyes as to Tyler's capabilities and it also has become family member in terms of helping Tyler get through stressful situations like grocery stores, doctors, restaurant, etc. Oh speaking of which, we know longer have to put Tyler in a higher chair at a restaurant! Previously we could not keep him sitting if he wasn't in a chair but now we can get a booth and he'll sit still. As soon as he stands up as soon as I say, sit down, he does. He's really doing great. back to the ipad, i occasionally take the boys to the gym with me as t hey have a fantastic child care facility, and one girl who works there on the weekends knows Tyler because she worked at Splash camp a few years ago, she's getting her masters in autism. Anyway, one time when I was taking the boys in, Tyler was a bit resistant. I asked Ben if anything happend last time they were there ( I love Ben for being able to talk for Tyler!!!) and he said Tyler got upset that they wouldn't let him play on the computer. So I thought, I'll show them... next time we went in, Tyler brought his IPAD with him so they could see all that he's capable of. they were blown away. In the time it took me to go up and pay for the kids and come back they were already asking me a bunch of questinos about it. My response...just let Ty show you!

He's been doing good in speech too, Grandpa takes him each Monday, THANK YOU GRANDPA! Steve started a new job and thanks to layoffs, I'm doing the job of 4 ppl so we are so strapped for time and then the commute and both boys being on opposite sides of Ann Arbor, well we are just really running thing so Grandpa is a life saver. Anyway, speech has really noticed when Tyler does and does not have his B12 shots! Felt bad last week, we both tried the night before and the morning of speech to get him his overdue shot but the little bugger is on to us. You have to remember, he's had these shots since he was 18 months old. We tried the suckers but didn't see the same effects and we also don' t get the same effects through oral medication so shots it is. Oh and can't remember if i mentioned or not but we found an amazing pediatrician who wrote a script for music therapy (meaning flex spending can be used) and for B12 shots. very very rare for main stream pediatricians to do this, apprently I made a very good argument. nad he was great with boys. Really followed Tyler around during the check up and got into whatever position he needed to, to check the ears, heart, etc. And was patient with us finding ways to help Tyler through it. Ty hates his ears touched let alone someone pulling on them to look inside. Doc was so patient and took all the time ijn the world with us, he's phenominal!

Oh back to shots, so speech notices a difference when he does and doesn't have them. We used to give them around bath time bu tthen he started screaming anytime the water was running, to this day we still have to bathe him in the other bathroom, tried it at dinner but anytime his pantws are pulled down he freaks and then we'd sometime sneak it in at diaper which comes our next problem. Tyler already has a bit of issue with his diaper being off and hands wandering but when he thinks a shot is coming it's holy hell war to get him cleaned up. Found myself the other day negatively reinforcing something I should have been positively reinforcing ( on the potty). Not fun and a long not pretty story so I'll refrain from sharing, we'd all be happy giving up those damn expensive pain in the ass (literally) shots but when even therapists are noticing a difference, we must keep them.

OK onto IEP. This year was so much different than last year. I felt i had to pull tooth and nail to get them to recognize Tyler's skills and capabilities and this year, completley differnet! Tyler now has a communication device at school! We had an AT mtg a few backs that was great, so many ppl vying for Ty. He's blowing through his goals and they put new goals for the device in his IEP (unheard of last year) and he's already starting them. Already categorizing, like being able to put an Orange in a fruit category. In fact he had to go through his 3 year assessment for reevaluation of service and they had his PECS book and his Dynavox there in case he wanted to communicate and during the free play part of the ADOS test he looked around and didn't see toys he was interested in so he want to his dynavox scrolled through multiple pages to find his gears and made the sentence I want gears... at which piont his teacher and the evaluator said they had to get him his gears since he was so smart to use his new device to ask for them. Everyone says how smart he is and he just flies through the technology that they give him. I'm really excitged abou this future potential.

oh and in case i didn't mention this before, he received a grant for music threapy! We'll start next semester. We also are goign to hire a private music therapist and will have a mtg soon to just get to know eachother essentially. We hope our lives will slow down a bit late next winter when we can get this up and running on a weekly basis.

I'll write more later on his specific IEP goals but just know that he's doing phenominal!

10/16/10

2010-10-16T09:09:00.002-04:00

Hello!!

A few weeks ago I posted on facebook that I needed a good sign. Something to let me know that I was making the right decisions. That night I ended up in the ER, hmmm, not the sign I had in mind, however, within just a few days the good news started to pour in, so now I know... our decisions as of late are the best for the family and there are more good things to come for us, yeah. I have so much good news to report that I'm afraid I may forget some of it.

We had an assistive technology meeting for Tyler the week before last. HIs teacher was the one pushing for another meeting (love it). THere were 10 ppl in the conferfence room, right away I loved that tyler was important enough to the district to have that many people in attendance. Two of the women in attendance were from the district and there were speech pathologists with a lot of experience with augmentive communication devices. I gave a brief opening of Tyler's history as only 1 person in teh room (OT) had been with Tyler since he joined the school. The woman from the district were blown away by TYler's potential as to what I told them and his teacher confirmed. They used a word for him that I can' t remember but that basically labelled him teaching himself to read. Everyone was in agreement he is a great candidate for a communhcation device and they immediately reserved one for him in the district. That set the stage for setting up goals for Ty. At first someone mentioned 5 communicative functions on the device (details will follow later) and then his teacher said, well how about 10? Hee hee, I actually mouthed "i love you" she's a big believer that motiviation has been Tyler's issue in the past, and that he very much is quite aware and knows what he's doing and it just needs to be pushed a little and with the introduction of electronics into the classroom, he's much more interested and engaged. oh that's a good story too, let me finish this one. Ty is gettign a device from the district which will be rented of sorts (we don' t pay) that can come home as well. Can't wait for him to get it, school wills how him how to use it. It's a dynavox.

Ok Ty's class this year is a joint classroom but the second classroom is sort of the more engaged and involved kids. Well they made a decision last week to have Tyler start his day in that classroom. They say there is a huge difference between last year and this year and he responds and stays engaged in circle time, makes choices, etc. This is very exciting. Also he has a new speech therapist this year and she voluntarily asked if she could go watch the private speech therapist work with Ty so they could work as a team, yeah, of course! She went last week. oh and big thanks to grandpa who takes Tyler to speech for us every Monday!

Oh..... we love the ACC, one of TYler's guardian angels, AMy works at the ACC. she called me the other day to tell me Tyler was awareded a scholarship (10 weeks) of one on one music therapy, yipeeee!! Right now we are just tryinh to work through scheduling issues. This bought me tijme to find a pediatrician...

and voila.. found a great one. Someone told me of an office that is great but they run sort of a lottery and you have to call at the beginning of the month and try to be one of the patients they accept as new. I called and got in. Upon their advice, yippee, they set up a "see if it's a good fit" meeting with the parent. Perfect for me because I had some pretty specific questions. 1) will you write a script for music therapy and 2) will you write a script for B12 shots so we no longer need a DAN doctor (this is the one that concerned me). Had the meeting this week and it went great! I loved the doctor, he was very open minded and really listened to everything and answered all of my questions great. He did tell me that he needed to talk to his partner abou tthe shots and get back to me. He called me the next day and said they'd do it! So the boys have an appt there coming up soon just so the doc can see them while they are healthy and get to know them, etc. I'm so excited and love the practice, it seems like a perfect fit.

Ok, I think that's all, I'm sure i"m forgetting something. Lots more news to report soon, lots of going on in our personal lives as well. Ben is phenominal honestly, loves his school and never wants to leave, very happy with the way things are turning out.

xoxoxo

October 2, 2010

2010-10-02T12:38:00.003-04:00

We had our first parent/teacher meeting for Tyler and it was fantastic. As a reminder, this year the level one classrooms are joined and each room has unique stations, they are joined in the bathroom area. THe second classroom is set up for more dramatic play and helps the children get ready for a level 2 class. There are 3 levels of autism classrooms in the school, Level 1 is the most impaired and level 3 is the least impaired. Tyler is still in a level 1 room at this point.

His 'homeroom" teacher is Julie who used to be the speech person for the district. I spoke to hear at the open house about TYler's speech and where we shoudl focus energy, etc. and she pointed out that speech is a priority in the classroom so that made me very happy.

ANyway, back to the meeting. The teachers commented on how smart TYler is and how quickly he picks up on things and how different he looks compared to last year. THey said during circle time he's participating in all of the activities and making sure that people are watching him when last year he seemed uninterested and would only participate part of the time. They are also open to communication devices and are bringing more technology into the classroom. They currently are using an IPAD and an Itouch and also bring in a TOBY to circle time which is a communication device. We have another IEP meeting coming up in October where we will revisit his goals for the year and it was discussed that we will put a communication device into part of his goals. At this point, he still uses PECS at school and theys aid he's doing great with PECs. THey basically said whatever we choose, Tyler should have no problem picking it up since he's such a bright kid. Can you imagine, Tyler having an effective way to communicate! THey teachers did ask how we communciate with him at home and to be honest I struggled to answer. IT's a combination of things but for the most part I don' t have trouble. I know what he awnts most of hte time and also know when he's upset and why. I completely understand why other people have trouble but I pretty much understand Tyler unless he wakes up screaming in the middle of the night then I'm usually clueless. I'm so excited though that everyone is open to the idea of him getting something to help him communicate with the rest of the world. So great news on the school front, he's doing awesome.

IN terms of a pediatrician, I found an office that I think we are oing to like and will work with us on biomed scripts as well. I have an appt with the pediatrician next week to see if it's a good fit (no kids at this appt), that alone excited me. That the office as part of their standard practice has the time to meet with parents first to see if it will be a good fit prior to meeting the children, etc. I can discuss all of my questions at this time and hope that they'll prescribe music therapy, yipee!

Tyler starts back up on private speech lessons next week. We struggled to find a way to have him fit into her schedule that matched a time in our schedule when we could get away from work. Tyler is very lucky to have fantastic grandparents.... grandpa is going to be taking Tyler to speech for us starting next week. THANKS GRANDPA! I'm hoping once we get approved for music therapy and get something on the schedule that we can reduce private speech to 2 x per month and music therapy 2 x per month. Insurance won' t cover any of it but flex spending will and I can't afford to flex spend both so I'm hoping to share the $$. Thinking since speech is more a focus at school this year that he may be able to do less private speech and then do something he really enjoys, music!. This paticular music therapist, I've been in talks with for years, it's just we've never found a way to pay for it before. He starts with the piano which is TY's fav of course.

Ben is flourishing at his new school and we are so so so so so so happy we made the change. He's such fun to be around, what a great age.

A while back I commented that we are making changes to simplify our lives and without getting into detail, we've started this plan. Hopefully within the next 6 months things will get easier for our family and the lessen the stress load and also open up some funding so that we can do more with both boys.

9/10/10

2010-09-10T10:20:00.003-04:00

Wow, saw Temple yesterday at michigan theater in downtown Ann Arbor, it was great. Posting an article about it below this post. I really learned a lot during her lecture about perception and even though I'm aware of Tyler's sensory issues, It's not always at the forefront of my mind. In the article below, it talks about a story regarding a horse and a certain colored cowboy hat. I immediately thought of Tyler and his food issues. How at 13 months we were beside oursleves with worry on easter weekend because Tyler stopped eating all baby food and would vomit at the site of his bottle (not even touching it)... we were worried we'd haev to hospitalize him...why on earth did it take me 2 days to realize all we needed to do was change the type and look of the bottle, grrr... voila, Tyler would take his bottle no problem. After the norovirus and Tyler's unwillingness to eat for 10 days!!! I started removing the plate completely and just putting food on the table, a different table, and he started to eat again and then I slowly changed back to the regular table with a plate. We still use this plan now if for some reason he eats a texture he doesn't like and begins to gag... we have to immeidately remove the food from his mouth or he will vomit or if he gags at teh site of food, we remove the plate and everything, try to guess what was causing the problem and then get a new plate (that looks totally different) add back all food except the one we thought was problemsome. Anyway.... thats what I thought about when she talked about the cowboy hat.

She also talked about different types of learners. She's a visual thinking, some people learn best with words, others are perception based. I actually think that Tyler learns in all of these ways. Pattern based thinkers are good at music and math and Tyler loves his music. I also think he has learned a lot from viewing words and matching them to pictures. I hope this is all good news for Tyler.

I was amazed at her sense of humor and wondered if it was a learned trait. People at the spectrum are so literal that I believe it's hard for them to be intentinoally funny. I wonder if it was a learned skill for her based upon her lectures. She learned why amused people and kept them engaged in discussion and therefore kept doing it in future presentations.

Ok, I am happy to report that both boys are doing great in school. Ben LOVES his new preschool but it's definetly wearing him out. I asked him the otehr day if he misses his old school and he said he never wants to see Caden Saltz again.... poor boy was being bullied and it was making his days miserable. He's very happy with his new school and so are we.

Tyler is doing graet as well. He has new teachers this year and they are co-teachign the level 1 classrooms. They are also workign to do more inclusion work with general education kids which is great for role modeling. HIs teachers have been asking me a lot of questinos about technology and TYler's ipad and they seem to be really interested in bringing more technology into the classroom which will be great for TYler. He's so motivated to use electronics and there are new communication applications coming out all of the time.

Speaking of communicatino, Tyler said "yeah" appropriately the other day according to Annie's his secondary preschool. THey asked if he wanted to sit down and eat and he said yeah. We were very happy about this. We still are trying to get his speech therpy schedule set, haev yet to figure that out. I also really want to do music therapy (one on one). It's quite expensive and have been researching ways to get flex spending to fund it. Temple really drove this home for me yesterday, how important it is for us to embrace and support Tyler's interested and possible job potentials. According to HR, his pediatrician needs ot write s cript for music therapy. Which leads to my next problem. Tried yesterday to find a new pediatrician and the one we chose was nto going to be a good fit so we went back to the drawing board. Finding someone that will follow our ideologies for healing Tyler is the issue here. We've gotten some recommendations from friends so now I just need to find the time to start calling again. So then we can get the music therapy script and then will need to find a way to schedule that into our busy days. But again, thank you Temple, for reminding me of the importance of this. Plus, it's one on one, i'm not involved like i am with speech, so I can use that time to spend some quality time with Ben :)

Ok, that's all for now.

love to all

xo

Long before Temple Grandin's life was the stuff of an Emmy-winning HBO feature film, Chrisstina Hamilton had been trying to bring her to Ann Arbor.
Hamilton, director of the Penny W. Stamps Distinguished Speaker Series, finally got her wish of five years on Thursday night when Grandin's talk kicked off the 2010-2011 lecture season before a standing room only crowd at the Michigan Theater.
The lecture series is funded by University of Michigan School of Art & Design alum Penny Stamps. It's intended as a way to connect students with innovative artists.
Click here for the slate of Penny W. Stamps lectures for 2010-2011.
Grandin, a professor of animal science, a designer, and an author, focused her lecture on autism, animals, and the sensory-thinking approach both use to understand the world.
Beyond that work, Grandin has gained renown for designing humane slaughter facilities and a grading system to assess them.
"I want you to think about thinking," she said before the lecture. "And to understand animals, autistic people, mathematics — that requires getting away from verbal language."
Someone once asked Grandin, who is autistic and has Asperger's syndrome, what it's like to communicate with "normal" people.
"I feel like an anthropologist on Mars," she replied.
And much of her lecture focused on the failures of language to reach the autistic mind.
"Most kids, when you tell them 'don't cross the street without looking,' understand that to mean streets in general," Grandin said. "If you're going to tell your autistic child not to cross the street, you better tell them in 10 different places. They think in terms of specifics."

Temple Grandin appeared at the Michigan Theater Thursday.
Melanie Maxwell AnnArbor.com
Animals, too. Grandin once encountered a horse that was afraid of people in black hats, having been abused by a black-hat wearing cowboy in the past. People without hats and people with white hats triggered none of the fearful reactions that black hat wearers did.
"Animal fears are very specific. Their memories form in terms of pictures, smells, taste, touch," she said.
A number of parents in the audience asked Grandin to name a turning point in her life - the moment when the proverbial lightbulb clicked on.
She couldn't. Outside of the pre-age 2 "educational intervention" Grandin said is crucial for all autistic children, her progress is mostly the result of high expectations and a mother unwilling to give up on her. Doctors and educators knew a lot less about autism in the 1950s. Grandin didn't start speaking until age 4.
Now she's a professor at Colorado State University, a successful author, and the subject of a self-titled HBO film that recently took home seven Emmy Awards. That wouldn't have been possible without having mentors at a young age, Grandin said.
"You've got to work with these (autistic) kids: mentor them, hire them," Grandin implored the crowd. "Even if the skill you can teach them is a little outdated, it gets the mind working and learning. Kids who are out spraying graffiti need to be working with real artists. They need to start thinking in terms of assignments, and learn how to finish."
That's what Grandin did. She designed her first humane slaughter facility as a teenager, and built a portfolio long before anyone paid her to do so. She credits a childhood trip to her aunt's farm with sparking that interest. That and her mother's insistence that she make the visit.
"I didn't want to go (to the farm) at first," Grandin recalled. "My mom laid out my options like this: either I could either go for two weeks or I could go for the whole summer. But I went, and I loved it. That was the spark."
Grandin spent part of her lecture speaking against the "abstractification" of the language, one of the major barriers autistic people face in mainstream society.
"When we say, for instance, that a student has behavioral issues in school, that could mean he throws spitballs, or it could mean he hit the teacher," she said. "Now, both are problems, but the degree is different, and that difference is lost when you're being so vague. We need to learn to be more specific."
"Normal" people tend to think "top-down," Grandin said - they form their theories first and let in or discard evidence to fit that framework. Autistic people and animals think "bottom-up," or take an experience-and-evidence-based approach to the world. Hence the horse with the fear of black hats.
Educational systems that only cater to top-down thinkers are failing to reach many talented young minds, Grandin said. Under-stimulated, their problems spill over into the job market. Autistic students need school systems that challenge them while playing to their strengths, Grandin said. That's what she had growing up.
"The world needs different kinds of minds working together," she said. "We need to have these unique minds doing productive work, not bagging groceries because no one knows what to do with them."

Beaming with happiness!!!!

2010-08-30T10:41:00.006-04:00

I have so much good news to talk about, I can hardly wait to tell you all. Let me first begin with, oh my gosh, did you see the Emmy's? If you have not seen the HBO movie Temple Grandin, please watch. The move took home 7 wins last night, 7!!!!! It's a move about the of Temple Grandin, she is extraordinary! I don't think I need to explain positive outcome this will have on the world of autism, but thank you Temple, for allowign HBO to telly our story. Thank you HBO for casting Claire Daines, oh my gosh was she amazing, and thank you to everyone who saw how amazing this film was and how worth it was for these awards. YEAH TEMPLE! Please watch the movie!!!

http://awards.tv.yahoo.com/blog/50-who-is-temple-grandin?nc

My other great news, we had an AMAZING family vacation. Whoppeeee. It's our first of hopefully many to come! I don't have a lot of time to write so I'll just say that the boys were great. THey both went on a roller coaster (big one), we visited water parks, beaches, museums, etc. The difference between Tyler this year and last year is unbelievable in terms of his coping skills as well as his tolerance for new situations, surroundings, people, and chaos. i cried when we got off the rollercoaster, in somewhat disbelief but mostly thankful for having a normal family moment. There were days that I never thought we'd have those moments. There were days when Tyler was put to the front and everything else pushed to the back burner, including Ben, Steve, my marriage, pets, etc. I just kept hoping and wishing that the pay off one day woudl be worth while and oh my was it. It all was worthwhile. I'm going to remember that vacation the next time we go through a hard patch and question my decision making, etc. Thank you grandma and grandpa Taylor for letting us stay at Sandy Pines... really helped us be able to get otu and take the boys places.

Ben started a new preschool today, yeah! This is going to save us a lot of money each month (long story) and it's also more local to Tyler's school which means our schedule isn't as crazy. Plus the school is fantastic and I'm so happy for him. I often felt I just made decisions for Ben that worked within Tyler's schedule but not necessarily whats best for Ben. I finally feel I have Ben in the best place he can be and it also works well for all of us.

There will be some other big changes comingin our life soon as well. I mentioned a while back we are trying to simplify our life and all of those plans are in the works.

Oooh quick update on Biomed.. Still my goal to find a new pediatrician, ahven'e done that yet but Ty has a cold right now and I"m needing to find time to get them to a new doctor. We tried once again to stop B12 shots without success, TYelr still needs those shots. THe problem now is he knows they are coming and it's really tough to give htem to him and ptus a lot of stress on Steve. We've been working together to trick TYler so he isn't aware they are coming. Teh suckers we tried didn't seem to have the same effect on him. We also have widdled down his supplements nad so far haven't seen any major changes. Right now TY is on spectrum complete, fish oil, digestive enzymes, pycogrin (SP?) and TMG. WE need to place a new order and I believe both boys need a calcium supplement and Ben needs iron for sure (carb junkie!) so I'm going to just try to keep Ty on that spectrum complete, enzymes(these two are the most expensive of course), and TMG and then B12 shots. When they are on antibiotics or sick I'll beef up on the vitamin C and Probiotics. But this is our plan moving forward into fall and winter, we'll see how it goes. He's doing great though.

xoxoxo

July 26, 2010

2010-07-26T09:14:00.004-04:00

Wow, as you can tell this month has been crazy and I just haven't found time to write in the blog. Tyler has a lot of summer activities this summer and it's been great, he's doing so well. He goes to Splash Camp Monday - Friday from 9:00 - 12:00. We were very lucky as we actually received our first grant for TYler, which paid for part of splash camp! It was our first grant and very exciting. Then he eats lunch in our car (my poor van is trashed) and then we take him to summer school from 12:30 - 3:15. Then we pick him up and take him to Annie's (his afterschool preschool with mostly typical kids). He only has summer school Monday - Wednesday though so the beginning of our weeks are crazy. Lots going on since there were layoffs at my work which added a lot to my plate as well as new financial software and a new staffing software that I sort of fell into leading the project, well it's been nuts. And Steve's work is always busier in teh summer so we are kind of just in warp speed it seems. I remember one week complaining to Steve that it was ridiculous that I coulnd't find time to get to the store to get some hair conditioner!

But as always, it's so worth it! Tyler is doing awesome at both Splash Camp and summer school. Summer school says that during circle time, Tyler is the star of the show and he always wants to make sure that the teachers are watching him. At splash camp they just keep commenting on how bright he is and how happy, etc. It was funny cause htey sent home a note one day asking if he knew how to spell hsi name because they wanted to work with him and we responded back, um yeah, our TY guy can spell all kinds of things. Oh if only he could talk and share all of his knowledge. I'm actually home with him this mroning as he's a bit under the weather. HE was playing the leapster and it had a dinosaur game in it. HE brought 3 actually dinosaur figurines with him. He'd push on the triceratops bones on the game and then hand me the triceratops dinosaur. He so wants you to know that he knows what's going on. Plus I'm really excited abou tthe possibility of Tyler having an interest in dinosaurs so that maybe the boys will have something in common to play with and it will promote more interaction between them.

Tyler is absolutely loving his ipad. THere is one app we have where he has to trace the outline of letters and numbers and words and he's really liking it and it's improving his fine motor skills. He also is learning to spell so many new words thanks to the ipad and in terms of our mobility, it allows us to get out and do more because we know that TYler loves his ipad and will be more content if he has to stay seated, etc. We took it shopping at Sam's the other day and Tyler was fantastic. THe IPAD has been a godsend really.

As for Ben, he seems to be doing much better at preschool now in terms of his social skills. He's still regressed in the whole potty training (has at least one to two accidents a day) and he's a bit more aggressive than he was before but I take that all as part of a learning curve and I am working hard with him on those things.

Both boys have really came leaps and bounds in terms of their swimming abilities. A couple of weekends ago , they both were jumping off the diving boards and swimming on their own in the deep end (with life jackets of course)> Tyler would happily drown if you let him, he has no fear what so ever of jumping in with no life jacket and just letting himself drown so we definetly keep his jacket on! It's amazing to see them swim around in the deep end of a pool, they look so grown up.

I had a dream the other day that Tyler could talk. And even though I have this type of dream often, this one was different. Usually Tyler just says one word or one sentence, this time he was speaking in whole sentences, as if he'd been talking his whole life. It was amazing. Felt so good, I was crying in the dream, I remember it all so vividly and then I woke up and felt an overwhelming sense of sadness. Earlier that day, I had picked up Ty and we had been in the car for about an hour, he was watching a movie. WHen we got Ben, Ben pointed out to me that he wanted to watch the movie but couldn't because the screen hadn't been pulled down. I felt really bad for Tyler. Poor guy had been listening but unable to watch his World Music Video because i didnt realize the screen was up and he didn't have a way to tell me. It's little things like this that make me crazy that he can't talk. Yesterday, Ty was not feeling well, I knew it as soon as I woke up, he just seemed off and then wasnt' eatin gwell. I had to work and Ty fell asleep on Steve's lap, not lik e him at all and then he slept for 3 hours in the middle of the day! And another 12 hours last night. He's definetly under the weather but I hate smoetimes that he can't tell me what's wrong, what hurts, how he's feeling, what's going on. It's always a crap shoot, he doesn't have a fever so to pin point the problem is tough. I just wish beyond wishes he could talk to me, you have no idea what it feels like to not have him be able to tell you the simplest things.

Speech has also been going amazing this summer. Carol says she doesn't know what we've done but to keep up the great work. Good news to us cause we are trying to limit his supplements. Oh, and we are down to only 1 shot, sigh, and are not wanting to find another DAN doctor right now so we are still working with Ty on the suckers. We have the B12 suckers now and i tried one the other dya and could definetly feel a difference. So we plan to give him a shot tonight and then start working on the suckers again. He just gets bored before it's gone and the whole goal is to let it seep in, not crush it and drink it so to speak so we need him to suck on those darn things til they are gone, so far he's not overl

y interested but he will tolerate them so we hope he gets better.

The good news and bad news

2010-07-02T16:13:00.004-04:00

The bad news is.. pretty sure i"m on the very of losing my mind lately. If it weren't for some amazing family members, it may have already been gone! My mom has been amazing. She's stayed with Tyler the last two weeks during the day. She's got him going on the potty really well and also got him to like suckers! This is huge for us. You know he gets methyl B12 shots well B12 also comes in sucker form, we have order our B12 suckers and hope we have the same effects as we do with teh shots. We'll soon know! The suckers actually end up being slighly more per month than the shots are, however it's a lot less stressful, easier to transport, no pain, and a special treat for Tyler. We've tried a couple of times not giving Tyler the shot during my mom's stay with him so she can track his progress, we never tell her when we didnt' give it though. She would jus ttell us when Tyler would ahve an off day or what was going on and then we'd give a shot and voila next day Tyler was more alert, interactive, and less stimmy. We know they work and are happy that we may have found a much more fun alternative.

The boys alos had their first densist cleaning. Ben did absolutely amazing. See him in the pic above smiling away. he was a total ham and never wimpered or complained once. Which isn't exactly his personality! He was such a good boy. Tyler on the other hand really struggled. I was so glad that both my mom and Steve and I were tehre. It took both Steve and I to manage Tyler so the doctor to get in his mouth, we literally had to restrain him adn if you've ever tried ot restrain Ty, he has the strengh of a 100 lb child I swear! My mom then watched after Ben int he waiting room. Remember Ben needs antibiotics before dental appts. I had remembered to fill the scripts and pick it up, however I had forgotten to tell my mom to give it to Ty before the appt. SIGH. So teh doc had to administer it there and then we had to wait a bit for his appt until he had those meds in his system. Anyway, it was stressful and thank goodness Ben has the worst teeth of the two (sorry buddy all myf ault) because Tyler is going to be a handful just get his teeth flossed. It's steve nad my taslk to really start workign with him on getting into those teeth, etc. and hving him slowly accept it. He's fine with teeth brushings thank goodness!

Ok I'm in a hurry so i will wrap it up.

So the good news.... we received our first grant! It helped us pay for part of Tyler's summer pgramming and we are super excited. The bad part is we have no idea how to manage TYler' sschedule right now. My work has had layoffs... I'm now doing the job of what 4 people once did and we are in the midst of (next week actually) using all new financial software in the city and my departmetn is training on new staffing software which I've been responsbielf for this project so my plate at work is more than full. Steve has a lot of pressures on him right now at work and begnning next week. For 3 days of the week, Ty goes from Splash camp, to summer school, to Annie's presschool... He's in presschool 3 days a week adn splash camp 5 days a week. All programs are great but the amount of running around we have to do in the middle of the day, well all day really, has our mind boggled with all the other pressures we have going on at work, home, etc. Did I mention we are hoping to move early fall and need to get things in order for that? So anyway life is crazy and somehow we are getting through it all and figuring it all out. Thanks to all who help us!

Love to all and happy 4th.

Update... he's doing great

2010-06-18T13:15:00.001-04:00

From Annie's: He is doing awesome! He has been eating well and refreshing us on our sign language! He has been a chatty guy with those hands today! Luckily we have Miss Mandy and Mrs Karen that have helped us keep up with him :) Currently he is playing in the big room with other no nappers.

So nervous...and PLEASE HELP!

2010-06-18T12:38:00.003-04:00

Tyler is at Annie's preschool/daycare all day today as school got out yesterday and we didn't have any other options. He usually gets bussed to Annie's after school and arrives around 2:30 and then gets picked up around 5:00 so an all day 8 - 5:00 stay makes me nervous although I'm sure he'll be great. Most, if not all, of the kids in his class are typical. I think there are 6 or so classrooms in the building, plus infant and toddler rooms and at least 3 playground/areas. It's a big place! Hopefully he's doing great.

Rumor has it Tyler did great yesterday with the ADOS at UMACC. We love to help them out and allow Tyler to be their test subject for training purposes. Big thanks to Grandpa for handling it for us as neither Steve or I could get out of work. Lots going on with both of us on the work front, creating lots of chaos in our scheduling and logistics.

Speaking of which, we are sad that we cannot attend the net workgroup session for autism insurance in Michigan. If anyone has the time and/or will be in the area, we need your help. It will be on Monday, June 21st from 12-2 pm. The workgroup will be held at the Detroit Medical Center's Children's Hospital Auditorium. A link to a map and parking instructions can be found here. Parking is available in the garage for $2.50 or you can choose to valet park (also, for a fee).
The auditorium seats 250 people- we need it packed with standing room only! Please wear your AIM shirts to show your support. If you do not have one, they can be purchased by going to Autism-Ask or a limited quantity will be available for only $5 on Monday. Everyone is welcome, so please plan to be there!!

If you cannot attend...write your local newspaper editors: Here's the info you need:

Letters to the Editor
Please write a Letter to the Editor of your local newspaper this week, ASAP! We are trying to get as much coverage of this issue as we can! Listed below are some key themes and points, as suggested by Dave Meador, who is going to be one of the speakers on Monday. Feel free to use these key talking points in your letter or create your own, with the theme being that it is time for the Senate leadership to take action NOW!
Key points:
Autism Insurance Reform in Michigan equals at least $14 billion more in savings for Michigan, a state in desperate need of reform. This is a conservative estimate.Michigan's 15,000 children with autism do not have access to the medically proven therapies that can move at least half of them to normal function. While the cause and cure of autism are not known, these proven therapies are not covered by Michigan’s insurance companies. Of the savings, $200,000 per child would go to the schools over their school life.That is why 22 states have rapidly passed this legislation and another 21 are on their way. Autism reform legislation equals at least $14 billion in savings to Michigan, $3 billion of that to the schools. It allows children a chance at a productive life and new jobs for health care professionals. Reform doesn't get much better.We encourage the Michigan Senate to continue to provide leadership and move on this legislation before the summer recess.Goal:Most Michigan Insurance Policies exclude coverage for medically proven therapies for children with autism. We are seeking to become the 23th State to pass insurance reform that would provide therapies including, but not limited to Therapeutic evaluations and interventions, Speech Therapy, Occupational Therapy, Physical Therapy, Comprehensive Behavioral Treatment for Young Children - Intensive early intervention, Applied Behavior Analysis (ABA), Psychological Services, Psychiatric Services The case for change is has been made and the time for action is NOW.

I am tearing up now thinking about the struggles our family faces, the dynamics of it all, and how it affects so many areas of our lives that you couldn't even imagine. Insurance coverage for just speech alone would free up $400 a month which we could use to pay for music therapy for example or use to pay Tyler's supplements which we typically end up putting on a credit card or can be used for a family vacation we are trying to plan someday so we can be a normal family on occasion. Not to mention how much it will help Tyler.. we want more services for him but we are doing all we can do now. You saw yesterday's post..the sky is the limit given the right resources and not providing coverage is discrimination. It's SO HARD on families. TACA reported 3 deaths this past week of parents who actually murdered their child who had autism. how horrific is that....these parents need more support and affordable services. So please do what you can do. xoxoxooxoxoxoxoo

6/17/10 - Last Day of School

2010-06-17T10:18:00.002-04:00

Today is Ty's last day of school for the regular school year :(. he has a few weeks off and my mom will be staying with him and then he starts Summer school and Splash Camp. He's a bit out of sorts today, he's been waking up a lot lately in the middle of the night and he's quite exhausted as result. They are going to jump city today and he's helpign U of M conduct some ADOS training this afternoon so I'm hoping he makes it through all that ok.

So thought it would be a good time to summarize where he stands on his goals from his IEP:

Self Help Skills: Tyler rcontinues to struggle with self care activities like takign off his coat, putting away his backpack, going potty, washing hands, etc. He can do these things but it takes an adult to support him thruogh each task or he'll just wander away uninterested. I'm hoping to work on more of these things this summer.

Fine Motor Skills: Tyler is still behind on his fine motor skills including scribbling, stacking, opening lids, etc.

Speech/Language: As we all know, Ty can't talk and has been struggling with signs for the pst 9 months or so. He scrolls and it's hard to distinguish some of his signs unless you have an idea of what he's getting at. He does however, follow transitional verbal directions/prompts for actvities at school without pictures. He's been donig this at home for a while, but school was using picturs as a support to help him transition from one activity to another which used to really be hard for TYler. He has a really good core vocabulary that he comprehends.

Play/Gross Motor/Imitation: The goal was for Tyler to imiated 20 gross motor movements and currently he can do 18 of them. He struggles with a thumb's up and touching his head. He struggles with social interactions but has improved. HIs goal is to have 3 - 5 turns per setting.

Speech/Language: Tyler has significant oral -motor apraxia and is workign on skills to imitate differentiated vowel sounds and counstantns. He's producing the "b" sound and the "A" sound givin a hand signal and at home also with a verbal prompt.

Ok that's a summary of where he is... how here is an awesome article from ABC World News..... made me tear up....I hope/dream/pray that Tyler's story will be similar.....

Autistic Salutatorian Delivers High School Graduation Speech
Rhode Island High Schooler Leads Class Despite Speech Struggle
By BRADLEY BLACKBURN
June 16, 2010—
Eric Duquette is the salutatorian of his high school, an honor student, a musician, and he has autism.
The 18-year-old Duquette, who couldn't say a word until age five, gave the commencement speech at his high school graduation ceremony Tuesday night in Smithfield, Rhode Island.
"My parents were told I would most likely end up in an institution," said Duquette. "I stand before you accepted into every institution of higher learning I applied to."
He stood at the podium wearing a green cap and gown and a big grin on his face. His speech, funny and touching, was met with enthusiastic applause from his peers.
Watch 'World News' for more on Eric Duquette's story tonight on your ABC station.
Duquette graduated from Smithfield High School with the second-highest grade point average in a class of just under 200 students. He will attend Rhode Island College in the fall, with plans to study biology and eventually become a pharmacist.
"Tonight is all about reflection and looking forward to the journeys that lie ahead of us," he said.
It's been quite a journey for Eric. His success in high school came after years of work and slow progress. Diagnosed with autism when he was a young child, Duquette struggled with communication and language.
Mother's Dedication Gives Gift of Speech
His mother, Judith Duquette, began working with him early to break down his communication barrier with speech therapy. In addition to professional therapy, mother taught son using sign language and cards with pictures and symbols.
Despite his early struggles with speech, today he speaks both English and Spanish. He's a member of the Spanish National Honor Society and placed 93rd in the nation on the Spanish V exam.

Judy Duquette combs her son Eric's hair before he delivers his graduation speech.Photo credit: The Valley Breeze
"Daniel Webster wrote that 'if my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest,'" Duquette said at the podium. "For me, learning to communicate did mean regaining all the rest."
Salutatorian with Autism Gives High School Graduation Speech
Listing the scholarships and college acceptances he's received, Duquette said that he hoped to inspire his fellow students.
"I tell you this so you do not allow yourself or others to be defined by your limitations but rather abilities. Never underestimate yourself," he said.

Eric Duquette, 18, receives his diploma during the Smithfield High School graduation ceremony on June 15, 2010.Photo credit: Lee Walsche/Lifetouch National School Studios
After the ceremony, Duquette told ABC News he was proud of his performance.
"I think I perfectly encompassed the compassion and spirit of Smithfield High School through each and every single one of my words," he said.

One last link.. this is a link to a blog of a mother with an autistic boy and this particular story discussed how an IPAD changed her son's life. I cannot wait to get Tyler one, he loves the one at speech...some guardian angels have ordered one for him and it's on its way :)

http://www.blogher.com/ipad-nearmiracle-my-son-autism

On the home front.. life has been rough lately. Lots of stress with death's, illness, work schedules, lay offs, etc. We are actively planning to have a simpler life come early next fall that will meet the needs of everyone and hopefully make us all a big happy family:)

xoxoxoxo

06/08/10

2010-06-08T15:24:00.006-04:00

The boys are having a great time on their new water slide/inflatable. We have such a hard time getting them to enjoy the same activity during the summer months. We usually end up taking the boys to a community pool or sprinklers or whatever during the weekends so that they can get out and have some fun and enjoy the health and good weather that summer brings and so we can too! they can be expensive, and time consuming once we pack up food for Tyler, activities to keep him engaged/sitting while we eat whever we are, and then all the normal kid stuff, diapers, snacks, drinks, towels, sunscreen, etc. We usually end up spending as much time traveling/packing as we do enjoying whatever activity we had to pay for. So this summer, we decided we'd like to spend more time enjoying life as a family/relaxing and stress free. So we got the boys this inflatable. It was a hard decision honestly but I've been feeling a lot of guilt lately about Ben, actually both boys. Man I wonder if that guilt ever goes away? Ben has been delayed in many areas and it's becoming quite apparent now that he's in a bigger preschool. His socials skills and self care skills are behind. A product of us having twins and one with autism for sure, none the less he's behind and it's hard on me, each time something happens I just feel so guilty. I know I make choices that benefit Tyler more than Ben and do so quite often. I hate that it has to be that way. Anyway, this purchase was a very non-autism gift. Ben deserves it... took a big hit that week in terms of figuring out how to pay bills but it was all worth it, look at their faces! It conveniently stores away in a small box and inflates in about 20 seconds, add a hose and voila.. hours of playtime.

oh, here's a funny about Tyler. We got to school early the other day and there is a play area opposite the hall way of his set of classrooms, so we went down there to play. There was another dad and his son playing there. At one point the dad was standing with one leg sort of over the other and his foot propped up from the ground, so jut his toes on the ground and his foot sort of resting near his other leg upright. Tyler ran by, looked at his foot, turned around, went back and then bent down and grabbed his foot and pushed it down to be flat on the ground. I quickly recognized what he was doing and told the Dad so he wasn't wondering what the heck was going on. Jeez.. didn't he know that your feet are supposed to be flat on the ground! Ha ha..

Another cool thing about Ty.. many kids don't realize until they get older that Twinkle Twinkle Little Star follows the same tune as the ABC's song. Tyler knows this... hard to explain but he has a bear that sings the ABC song and he signs twinkle twinkle when it comes on for me to sing that instead of ABC's.

We are once again research one on one music therapy for the fall. I am so happy because I learned that they begin with the piano. So I'm really hoping we can figure out a way to make that happen. We do plan to free up some monthly cash flow so this should fit right into that plan.

We haven't yet found a new pediatrician, I'm struggling with the whole DAN Doctor and whether or not we really need one and also getting recommendations from friends. I don't know how we keep having to change. The plan was we'd move to a small town, have a small town doc, and they kids would have htem til they graduated high school. oh how things are different than my grand plan! Speaking of which.

The other day, the boys were in bed and Steve and I were in the living room and I said, I just want it to be a bad dream. I want to go to sleep tonight and wake up with the life we had wanted/dreamed of. I want our boys to go to school together, to play together, to talk! To go camping, to go to the store without packing 5,000 things to keep Tyler entertained. I want to be able to provide for the boys equally and be able to save money for college fund and us for emergencies. i want to visit family more often, I want our kids to play with our kids friends... I guess I got what I wanted. When I was pregnant and put on bed rest at 26 weeks, i remember just praying that the boys would stay in long enough to have a chance at life. I should be more thankful that I got what I wanted then, things could have been way worse of course and i do have two happy and for the most part healthy boys. I really am thankful for that. It's just that autism can be so draining sometimes and to know that there isn't really an end in sight, it's just a continual fight, sigh. I feel so guilty all the time that I'm not doing enough and I hate it. And to be honest I could do more and i know it, sometimes I just don't have the energy. Last night, dinner was going so well with Ben and he was so engaged with me (and had been a bad boy at school) that I really wanted to work with him.. so Tyler ate with his fingers and I didn't' stop him. We really want Tyler to begin to use his utensils more now that he's eating by himself. Steve was at our parent support group last night, it's hard for me to attend because Tyler is usually in bed by 6:45. Oh and then Ben and I had a sort of bathroom disaster last night and I was happy Tyler was in bed, he wouldn't have had the patience to deal with it. I can completely see how it would have gone if Tyler was awake and inadvertently I would have likely yelled at Ben who never seems to stop talking in the moment of crisis which in no Way was his fault or does he deserve it. And that's what i mean about a normal life...that's how it's supposed to be. Ben and I did great, he was patient, waiting for me to drain the tub, fix the problem, fill it back up so he could bath. No crying, whining, etc. Tyler would have been so upset, not understood what was happening and certainly not been able to wait the 5 or so minutes it took for me to take care of the problem and since it was close to bedtime, he likely would be screaming in my face until I put him to bed and skipped the bath. Ben would have been whining that Tyler was hurting his ears and then acting out for attention cause me calming Tyler would have been my activity at the moment. Ugh. For all of you who say it's like that when you have multiple kids, I don't believe you., or at least I can guarantee you it's not the same. I've seen my friends who have multiple kids and it's not even close to the same. You'd be amazed at how much just the concept of waiting can cause issues in our house. Or the fear I have that at any moment Tyler could walk out a door and I'd never see him again, he couldn't tell anyone who he was or what he was doing. Definitely my biggest fear. We were at friends recently and a babysitter was there because we were all going to a Detroit tigers game (I got free tickets thru work) and they have a huge house. Plan was for the sitter to watch our kids there, they have a 2 and a 5 year old girl nd then our boys. The house is 3 levels with numerous doors and I was not comfortable with Tyler having a run of hte house, so they had to move everything for their kids downstairs so that the sitter had one floor to watch the kids/doors. That's what i mean about it not being the same. One of their children was younger than ours but they had no worries at all about their kids taking off or being in far off places of the house without worrying to what they were doing. I can't imagine that for Tyler, we have gates, locks, etc. everywhere. Too many stories of kids with autism lost in the woods in the middle of winter or in the swamp or wherever. They don't understand to ask for help or they can't talk at all or they don't realize they are in danger.

There was a night a week or two ago we had friends over for dinner. Tyler hasn't seen them in a long time, i.e. no way could he remember them. The kids ate first as they were getting hungry and our food wasn't ready. After dinner, the adults were sitting at the table wrapping up and Tyler went up to the guy (pete) who's a big guy! And grabbed his hand so pete said, what's up dude. Then tyler pulled on him, so I said he wants you to go with him, so once Pete stood up, Tyler put his arms up, I said, he wants you to pick him up and take him to bed. Pete goes, really? I said, yup! So cute!!!! So he took him to bed and all was well. It was really so sweet.

As for the Assistive Technology Plan, it isn't finalized yet, still in the planning stages after our 2 hour mtg, but hope to wrap it up before the end of the school year for sure and have something in place moving forward for next year. I'll keep you posted.

A day in the life of Tyler's parents

2010-05-26T13:30:00.006-04:00

It seems on at any given moment on any given day, we are working on something for Tyler or thinking about what we should be doing and haven't yet. Right now we are working on a grant application to help fund some of Tyler's summer programming. Always lots of paperwork involved when it comes to Tyler! I'm also working on preparing for his AT meeting tomorrow at his school. We are both still trying to plan for his long term future as well, oh if I had a crystal ball.

His still doing spectacular in terms of his social interactino. yesterday steve and ben were playing GI Joe on the Wii and Tyler went and got a GI Joe helicopter and a GI JOe dude and brought it to Steve. He NEVER plays iwth the GI joe's.. he doesn't haev those imagination skills yet so he was communicting to Steve that hey, I know what those are, here you go. I cannot emphasize enough how happy it makes me to know that he WANTS to be social with us. There was nothing in it for Tyler for him to show Stev that stuff, he just does it because he truly enjoys the interaction. not long ago, we had to reinforce him, significantly, just to look at us! Thinka bout that..... we had to swing him or sign or give him a fun toy just to get him to look at us and now he's wanting to be around us, wanting to interact, wanting to show us he knows what's going on and wanting to be involved.

The sky is the limit for ourlittle guy!

Here's some swimming pics.. although they didn't totally capture how darn happy he was.. he had the giggles nearly the entire time.

5/24/10

2010-05-24T11:57:00.002-04:00

A big thanks to everyone who made it possible for Steve and I to get away for a few days! I know I've said it before but divorce rates are much higher for a couple that child(ren) on the spectrum vs. not and well we've had our share of scary moments to be honest. We decided on this trip that we have to figure out a way to get away together at least 2 times a year. When we go a year or longer we are already on the brink of throwing in the towel so to speak. I knew things were not going well for us so I knew a break was in order and where there's a will, there's a way. I intentionally applied for a credit card that gives enough frequent flier miles for at least 2 round trip flights just for signing up. I was all over that! So thanks to a couple of free flights, a cheap govt rate hotel and some fabulous relatives for watching our children, we jetted off a very much needed get away together. It's sometimes so easy to caught up in day to day stress and even though you know you love eachother and you know why you love eachother, it can begin to drown in all the stress and negativity in life. Our trip was amazing, I cannot remember the last time we were so happy together. It's been a long long time. So thanks again to everyone who made it happen.

The first night we were gone from home, Tyler went around spelling our names and looking around the house for us. i talked to him about us leaving, etc. but I'm not sure if he understood or not, I think he did. He has been amazing all weekend in fact. He's making all kinds of noises and sounds and while we were gone he didnt' have any of his B12 shots. We talked about stopping them again for a bit to see if we see any regression, we also started one of his new medications. I bought some organic fruit/veggy juice suckers to see if we can get him interestedi n suckers, if so, the B12 he needs come in sucker format and we'd like to use those instead, but only when he needs them vs. the injections every other day. I really feel like he's trying so hard right now to communicate and am hoping we'l see a break through soon. Speech is today and she has a new app for the ipad she wants to try with him so I'm excited for that!

We had Tyler all to ourselves on Saturday because ben was at the lake with my aunt. So we took him to an indoor water park. It was so nice to be a one kid family. He loves the water and water slides. he even went down the big slide with dad and ahd a ball, waiting in line wasn't so easy though but we managed. We also worked with him on swimming. He likes to dunk his head under and he holds his breathe, he's doing so well! We had a great time, I'll post pictures soon.

Gotta go for now, just wanted to say thanks for all the support and love that our family receives. We coulnd't make it without you.

051310

2010-05-13T16:14:00.002-04:00

Ok good news and bad news... Bad news is our Dan Doctor/Pediatrician is not only moving out of the city but also no longer accepting any insurance. He's hte pediatrician for both our boys and even though he was a bit quirky, it was so convenient to have one stop shopping. We seem to scare away the pediatricians in our lives.. ha ha. So now we are just trying to figure out whether or not we need a DAN doctor right now or if we can just get a really understanding/open minded pediatrician who is willing to write us scripts for the B12 shots and the other new meds Tyler is on. Not all mainstream docs support the biomedical treatment of autism and heck as an outsider it does seem weird to give a 4 year old anti alcohol and PCOS medication! So we'll begin that search sometime soon. Another set of paperwork and transfer of files, sigh. The paper just never ends does it.

Good news. Ben is staring to adjust better at school. He's making friends now and seems to be less anxious and upset about going to school so that' good. Still tells us every day he doesn't want to go but now sometimes he doesn't want to leave when we pick him up so that's going well. And we've really finally won the battle on food. he knows he has to try everything on his plate, just one bite if he doesn't like it, but he has to try everything or he goes to time out. Does it now with no fuss. just took a lot of patience to get to that point. And he is seriously turning into this adorable little boy.. my goodness he's getting tall.

Tyler is just flourishing right now, really happy, really aware, really wanting to interact. I love it when he's like this.. I want to capture it and make sure it never goes away. He's still really trying to make sure we know what he's talking about and the he can understand us. This morning he grabbed a bird flash card and went to the window and opened the curtains and pointed outside. Then we were packing up to go, a bit hectic as we were running late, and I said come on guys, we gotta go. Ty picked up his electronic leap frog game and typed in Bye. I said yep, we are going bye bye. Gonna have to get him something else soon that one only has space for 3 letter words, ha. He was playing a game in the bathroom on his little computer while i was getting ready and it showed a tree. So eh went to the window and pointed at the trees, i said yep, tree. So then he went to his room and came back with a bin full of letters. So I got the letters out for him and then he spelled tree. I'm like yep little buddy you got it. He recognized the shape of a black tree on the screen of his computer, a real tree outside, and the spelling of the word tree. See he just wants to make sure that we know he "gets it". YES!!! We get it baby and will keep fighting for that little voice of yours to be heard. He's obviously got a lot he wants to share with us.

Brings me to my next topic. I think I may have found a way to get a toughbook laptop computer for free or very discounted, yeah! Hopefully in the next 2 months, if we have that, then we are gonna get the DT training software right away and begin working him on all of that. Another parent at Ty's school is working on a grant to get DT trainer into the classrooms for kids as well. I'd like to get a head start on that this summer. So as soon as we know whether or not we are getting that laptop, we'll purchase an ipad for Ty (well all of us really). Oh how exciting if my boy can start talking to me. I know I've expressed it many times but it's heartbreaking when something is troubling your child and they cannot tell you what it is. Today, really upset at his socks, not sure if he just didn't want them on, if it was on wrong or if god forbid a string got caught wrong and it was cutting off his circulation or something. Poor Ben came running into the kitchen a couple of weeks ago nearly in tears telling me his penis hurt. I pulled his pants down and realized the elastic from his underwear were kinda cutting his poor penis in half decreasing the blood flow. OUCH. See It kills me to think those things are happening to Ty and he can't say hey mom, somethings wrong with _____________! sigh. so if he can type it or even one word that gives me a clue like "ear" if his ear hurts or whatever, until hopefully one day he can talk, well then I'm all for it. Plus he's so super excited about it all. I love his engagement level and the thrill he has to be able to share with us. Oh it gives me such high hopes for him as an adult. And I'm pretty sure that he asked to go potty at school, I asked the teacher for clarification but the notes from school said he urinated after using the potty picture so I'm pretty sure he used his PECS board to tell them he had to go potty. I didn't know whether or not he knew when he ahd to go..apparenlty he does, yipeee.

xoxo

5/10/10

2010-05-10T15:39:00.002-04:00

The best thing about having kids is that they certainly know how to make a crappy day into a fantastic one. Let's just say Tyler was awesome at speech today. I'm not sure I've mentioned this or not but we have an assistive technology mtg. set up a school for the end of the month. ok it's coming back to me, pretty sure I have mentioned it before. I don't have much time so I'll cut to the chase. We really want to get a ipad or itouch and a touch screen computer for tyler (and the rest of us too of course). There are many many useful communication and learning apps that can help Tyler. we've already started researching touch screens on ebay and considered opening bank accounts where they are giving away free itouches.. (seriously) where there's a will there's a way, tee hee. Anyway after speech today I'm definetly much more for an ipad than an itouch due to the size of the screen, buttons, etc. would be easier for Tyler to use. I'm gonna attach 3 videos if time allows. We did other things other than these, there were car/animal sounds and he'd push whatever he wanted to get teh sound and then we'd make him make a certain sound to hear it again, etc. So we did use the ipad for specific speech stuff (great reinforcer) however then Carol began to test his cognitiive skills. First video will show Tyler looking at the screen, has 6 pictures on it and then a word at the bottom and there is a voice telling him what the word says adn to find it. So he touches the right picture and it will give some sort of verbal attaboy! The next video is when she started to test his cognitive skills, she removed the verbal prompts from the options and not only do you see he starts to answer more quickly but he also is enjoying it much more, he begins to get the giggles, run around in delight and truly seem to enjoy the experience of showing us what he knows. He's so super smart. You will also see him try to make real world connectinos, i.e. he reads the word "window" on the screen with no verbal prompts and then runs to the door and touches the window within the door. Then it lists the word "door" and he runs and touches the door handle in addition to touching the picture on the screen. Started writing this yesterday and didn't have time to post it so I'll add something that happend last night. Tyler was playing with his singing time flash cards in his bedroom, I'd say about 50 of them. He wanted me to play with him, he really really seems interested right now and making sure I know he knows what he's talking about so to speak. For example, he was also playing with the cards in the kitchen while I was cookign dinner and he pulled out the sock flash card and kept pointing to his socks until I looked. Anyway, he wanted me to play with him in his room with the cards, I had went into my bathroom to change my clothes. He was pulling my hand to come with him so I said one minute, mommy has to go potty. He ran away, I went potty, then he comes running back in and handed me the "potty" flashcard! AWESOME.

Ok sorry to not really wrap things up but I gotta go, hopefully I clearly stated what's going on int he video, the quality is bad so it's hard to see what's exactly on the ipad screen but take my word for it.. my boy can read ;)

5/5/10 Cinco de mayo

2010-05-05T13:40:00.000-04:00

Happy Margarita day everyone:) Just wanted to let you all know that Tyler has been nothing short of amazing this past week. I teared up at speech on Monday twice because I was just so happy for him. Of all the days for me not to bring my phone in and video...grrr.... Tyler was doing a great job of sitting. I know this seems like a small feat, however, there are days where I can't even get him to sit for a split second, he's floppign around and throwing him self back, etc. He sat so well on Monday and even stayed seated and not agitated when betwen actvities, i.e. the therapist putting away one set of toys and getting out another set. He also had very clear signs. no scrolling, no problems, just very clear. He requested "blue" and he also requested "duck" both crystal clear to the therapist. He was making all kinds of sounds upon request, with no frustration and littel prompting. In fact there were a few times I heard him correct himself.. makes an ahhh sound and supposed tobe an "ohhh" sound you could hear him correcting himself. It's hard to explain without you actually seeing him but take my word, he rocked that session. Once again..a very very big thanks to some of Tyler's guardian angels for helping us pay for speech this month.

The only problem we've been having with Ty is his sleep habits, he's been waking up very very early, between 4:45 and 5:20. Not only does this cause us issues with trying to get ready for work in the morning but it also means that Ty is passing out around 5:30 each night and then the cycle would continue. We finally broke it the other night so hopefully we are back on track with him getting up at 6:30 instead. Gonna be tricky if we ever have to have the boys share a room, at least in the near future. When Tyler gets up, he turns the light on and starts playing which would obviously wake up Ben. Ben is an emotional boy in the morning so I can only imagine how much fun he'd be at 4:45! ICK. We've been considering downgrading our living situation to free up some cash flow each month so things aren't so tight and then we can do more fun/stress releiving things as a family and a couple and be able to better afford services for Tyler. We also want to make sure we keep ben enrolled in social activities as he's struggling a bit with his social skills right now (has me paranoid of course).

This is the thing.. I realized something this weekend, something beautiful about autism. Yep, there are a few and I occasionally comment on them. I took the boys to play at a mcdonalds play land. At one point both boys were up in the structure which was awesome, usually Ty just runs back and forth on the floor and climbs up the slide, but this time Ty did play functionally. Anyway, the beauty of autism is that Tyler is blissfully unaware that no one wants to play with him. He is carefree, running around laughing and squealing and haveing a great time. I watched him thinking, we all should be a bit more like Ty. He's just happy being and could care less what anyone around him is thinking or the fact that they don't want to be with him. ON the other hand, we have Ben, who was literally begging kids to play with him and they wouldn't. That was heartbreaking to watch. He jus tkept saying, will someone play with me please. We are working with him a lot on social interaction and appropriate ways to play. Once again, mommy guilt kicks in that we haven't had a lot of social opportunities for Ben in the past so he has some catch up to do. Anyway I did step in and give him tips. There was a shy litte girl there so I suggested they play hide and seek and that worked for a bit, I also suggested he chase TY around and play follow the leader. another group of kids were in a birthday party type situation so they were kinda of ignoring him and he was sad. It was just awesome that Ty is oblivious to all of that. It makes me happy to know those things aren't going to bother him in life. Oh, back to my "working on it" though, at the park this weekend, I worked with Ben on what it means to play with someone and not just play what you want to play. This was hard for him to understand but eventually he did do what I watned so we cuold dow hat he wanted, etc. Which reminds me.. Steve's bday was this weekend so Grandma Taylor came down to watch the boys so I could take steve out to dinner. The boys loved playing with Grandma Taylor, thanks grandma!!!! Ben said how sad he was when she left, aweeee...

Other than saying how high divorce rates are for couples that have children with autism and commenting occasinoally that it all takes it's toll, I haven't really gotten into the specifics of my marriage, mostly because this blog is about Tyler. However there was a great article recently in good housekeeping (may have mentioned this already) and if you haven't read it, it truly is exactly how Steve and I were for the first 3 years of the whole autism thing. In fact, it's a pretty common story with most couples. Mother accepts and starts fighting quickly, father feels guilt and resentment and struggles to move forward and a barrier comes between the couple and so the problems begin. It's easy as outsider to see and undestand how it all happens and how easily fixable it could be but i promise you when you are in the situation, it's pretty tough! So now, it's taken 3.5 years but we are definetly on het same page in regards to Tyler. I think our last major issue over his care was last fall and we worked through it with success. But what I've never touched on, is what happens after all of that, after you agree upon what to do, after you figure out the money, after you manage schedules, etc. what happens after that is actualy chaos. Ok you have a plan in place but there is only so much time in a day to accomplish everything and to be honest, it's impossible.

So our arguments after figuring out all the autism crap, is just that, how to accomplish the rest of life that falls into priority after the autism crap. That's where it gets tricky. I read an article recently that must have been for mothers day and talked about superwomen and in this day and age woman feel the need to do it all and feel like failures if they don't. The author said how she had a friend who was as stay at home mom who feels guilty for not contributing more to society. A restaurant owner who feels she doesn't spend enough time with her family, etc. The bottom line is we can't be all things to all people at one given time. It was a great article, it focused on being happy in the moment, how to find happiness with life just as it is now, so what if the laundry is piling up, or if you have to order pizza and don't have time to cook a healthy meal, in the grand scheme of life, who cares. Sort of a don't sweat the small stuff. I talked to Steve immediately after reading it saying I wanted that. I want to find a way for us to be happy now vs. continually planning for the future. Sure we all have to set goals but I think it's incredibly important to choose to be happy right now, because it is a choice. So I guess that's my theme for this blog update. Watching Tyler at speech on Monday made me incredibly happy. Sure Mondays are hard for me, i'm gone for 2 hours in the middle of the day from work to get ty and take him to speech and take to daycare so I try to get to work early to accomodate, which means getting up early, which means my entire day on Monday's from 5:00 on is a go/go/go. Even when we get him which is later now, it's a rush to get dinner made and on the table before Tyler passes out. Given all that.. I sat there on Monday watching him at speech, and I was so incredibly happy, not caring what was happening at work while I was away or what was going to be waiting for me when I got back, what I was going to do for dinner or anything else. I was happy just to be and enjoy watching my amazing son. We all should choose to be happy more often. I know I'm going too!

xoxo

4/27/10

2010-04-27T12:27:00.000-04:00

Yeah, I'm back online. Have something so exciting to share, I'm making the time to get on and write it down before I forget. On Sunday, Grandma was gettign ready to leave and giving us all hugs goodbye. She was by the door and Steve was helping her get her things around and Tyler was playing with one of his electronic alphabet leap frog toys. I was sitting with Tyler on the floor and he typed in "B" "Y" "E" and then the toy said "bye" and he waved goodbye to grandma. Steve and I just looked at eachother and teared up.... he's so smart! He's also just been amazing lately, "With it" almost all of the time. Sure he has his little habits like chewing his clothes and repetative behavior, etc. but he's really aware right now and interactive and talkative. Just a really great kid to be around.

Oh and Ty is starting to get his first freckles:) His after school school if that makes sense is outside most of the afternoons and he's getting more sun than he's used to I think so his little freckles are coming out. Speaking of which we've been busy transitioning the boys into new schools. Ben is attending a new all day preschool and is having trouble adjusting. We all are subsequently having trouble adjusting and working to help ease his transition as well as the behavior problems that are occuring as a result of the transition. Steve said last night, you knwo Melissa it's just because he hasn't been in school prior to this and hasn't had much socializiation or structured enviroment, etc. Yep I know, and that just makes me feel more guilty about the whole thing. we essentially kept choosing Tyler over Ben in terms of priorities and resources and now Ben is suffering a bit and it breaks my heart. Tells us every day he doesn't want to go to school..actually he says he doesn't want to go to "his school" he wants to go to a different one. He's hitting other kisd for no reason, just walkign up and punching them and having numerous potty accidents in a day now. It's really heart breaking. Again we are working with the school on all of it and setting up reward systems for good behavior but my mommy guilt is in full force right now.

As for TY, he transitioned better than I thought. He likes school in fact, he even rides the bus from his first sfchool to his second and as far as everyone tells me, he's doing great. But then again when I go pick him up from his second school, all the kids are playing in the back on teh equipment and in the sandbox and TYler is kinda just running around aimlessly chewing on his clothes. So I'm not sure how much of a learning/social environment it's creating for him but it is good that he's around typical kids. In fact, the directors daughter has taken a bit of a liking to Tyler. Mentioned to her mom the other day that Tyler doesn't talk to her and asked if that meant that he didn't like her. aweee.. hopefully they'll be many of those kinds of kids throughout his life. I really wish we could send Ben to Ty's school, we can't afford it. We pay more for TYler to go part time (2:30 - 5:00) than we do for Ben to go full time (7:45 - 5:45)... so Ben going full time where Ty goes is just not an option but it was a good part time solution for TY.

Right now we are gearing up to plan the summer programming. Summer school 3 days a week in July, splash camp 5 days a week in August. we are working through schedules, costs, etc. how to get Ty fron place to place and where TYler will be and when. His preschool/daycare is a pay a month in advance type situation so I have to have everything planned out well ahead of time. If anyone would like to spend any days/time with Tyler this summer let me know!! He has a few days here and there where he won't have any type of therapy going on and I'm very anxious about him staying at either his or Ben's preschool/daycare for a whole day. Would love to have some visitors stay and play with Ty thsi summer at our house and it would save us lots of $$$ too, so please, volunteer :)

ok, I have lots more to say, just not enough time. Love to all.

4/9/10

2010-04-09T14:30:00.000-04:00

So sorry for the delay, everyone has been sick for over a week now. First it was colds, then Ty had a fever, then he started vomiting, then lingerling diarreah (all while still having the cold) and then Ben piped up with a small fever, then vomiting (just once though) and now the diarreah and to fully celebrate the last day of daycare today at Miss Karen's, Tyler decided to puke just one last time (hadn't puked since Sun) and I"m pretty sure she's still dealing with a faucet coming out of ben's booty. She's probably gonna have a big party tonight after bidding a final adeu to my boys.. they are such little walking super germs! lol... I was home with Tyler on Monday, Ben joined in Tuesday and god bless Grandma Taylor who came to watch both of the boys on Wednesday as Steve adn I both have super busy work weeks and neither of us could stay home on Wednesday, thanks Grandma!!!!!

So everyone say a big prayer and cross your fingers because both boys go to new preschools on Monday and we need them to be healthy! Ben is really excited to go to school. I already got him a camoflauge lunch bag, now we just need a backpack and suprisingly he told me he wanted a Diego backpack. hopefully I'll get a chance to take him shopping this weekend if his diarreah will go away. It's pretty bad right now. He'll be going all day to a large preschool facility near our house. Tyler is going to be going to an even bigger preschool but only after his regular preschool so he'll only be there for about 3 hours a day with the exception of Monday when he has speech therapy. I'll be doign that on my lunch hour and then taking him to the new preschool, but Tuesday - Friday, our little guy will be riding the bus from his regular preschool to this new preschool/after school care. Don't worry they have 5 point harness restraints on the bus, I already asked.

Steve and I are both super super nervous about Monday and this big change in our lives... so the added element of possibly lingering illnesses is not helping matters. Winter is over already, my family deserves health.

Ok so maybe I can share a little humor for once.... my aunt pointed out how humorous one of these stories is at least looking at it from an outsider.

Let's see..Monday night I started not feeling well at all and by Tuesday morning I was running a fever and caring for Ty who was feeling better but just still had diarreah so he had far more energy then me. Then the cal from daycare that Ben was feeling nauseated.. so we go get Ben and come back. Ben is also very energetic which was kinda awesome cause he was helping me with Ty. Ty likes the trains to work in a certain way certain cars go one way certain cars go an another path.. yuo have to assist him with the process, Ben knows it so I coul dhave ben Help him. Then it's lunch time.... I get the kids lunches ready. Ben was compaining of a stomach ache..at this point I'm still thinking he's faking being sick cause he watned to be home with mom. Made a huge fuss about not wanting to go to daycare that day adn then suddently his belly hurt. he occasionally has bowel trouble so we usually give him benefiber for children in the evening in his rice milk. The past cuople of nights however, we hadn't, because we got a new nutritional drink for him to have at night to try to fatten him up a bit. So I figure he must be constipated, I couldn't remember the last time he had poo"d so I made his rice milk with benefiber mixed in and Tyler's was a nice little cocktail of probiotics and enzymes. We sit down to lunch and everyone is doing great and Tyler hands me his cup and signs milk to tell me he wants more milk and I look down and there's a big "B" on his cup. UGH!!!!!!!! He drink Ben's milk which had benefiber in it. Tyler had been having diarreah since Friday, it's not Tuesday, still diarreah and he just drank fiber! Now add this to the pressure that at this point we didn't have anyone to watch the boys yet the next day and now i may have extended the diarreah, not good. But funny as an afterthought.

Ok story #2, Thursday morning, we are getting ready to go to miss karen's. Ty is on spring break this week so its actually making us have to leave a bit earlier. So I say it's time to go, Ty is upset at his leapster. We are walking out and he keeps handing it to me to tell me something is wrong (kinda making a whiny frustrated noise) but won't let go or let me see the screen to figure it out but in the mean time he's refusing to walk, Ben's already in the garage. Finally I just move him along and he's resisting, gets mad at my alternative toy. Ben climbs in his chair, I stand Tyler in the car and tell him it's broken and I do not have time to fix it. Tyler is melting down and refusing to sit in his chair, Ben is already in his chair and then Ben goes, uh oh, I gotta poop. DANG.. diarreah. Ok so Im like ok Ben we gotta hurry.... I race Ben inside to sit him on potty while Tyler, my autisitic non-verbal boy is standing unrestrained in my vehicle which is running in the garage (door open at least) and alone. eeeekkk.... I race ben in whipped down his pants, and raced back up and strapped a screaming kid in his seat and turned on a video and hoped fo rthe best so I could go back in and help Ben with his poo... on way to daycare steve texts me to see how the kids are doing... lol.... just another day in paradise honey :)

onto some fun things about Ty and his abilities. He got some letter beads which he got for his birthday. You are supposed to lace them with a string but we played with them while the boys were sick and just made the alphabet, words, etc. Tyler, all on his own, spelled Ben and then ran into the living room, touched Ben and got the giggles. It was awesome, so smart. So then I asked him to spell mom and that one stumped him so I asked him to spell dog and he got out the D and the O but then struggled to find the "g" I do believe he knew how to spell dog just couldn't find the G in the mix of all the otehr letters because once I kind of narrowed down the options for him, he got it! It's has to be incredibly frustrating fo rhim to have all this knowledge and ability in his head and not be able to verbalize it. I can't even imagine what it's like to be Tyler some days.

2010-04-01T10:36:00.000-04:00

Tyler is doing really great potty training at school. He was dry all day last Thursday at school and he goes potty within 30 seconds, typically, of them sitting him on the potty. Really proud of him. In fact the other day, he was between potty sitting times at school and the parapro noticed him kinda squatting and he looked at the toilet and she said somethign to the effect of you can go potty so he jumped on the toilet and went poo poo. Now we just need to find a way to have time for this schedule at our house. Sit on potty for 3 mins, off potty (no pants on for 10) back on potty for 3. That's a lot of potty and you gotta sit with him.

This past weekend I took Steve to the gym with me. I initially chose the place because it was inexpensive, all classes are included in the cost, and best of all they had childcare facilities and upon further review, staff with experience in special ed. So Saturday was the first time we all went, finally got all the paperwork together I needed to get the boys in there. As we were signing in, the lady asked their names so I introduced them and then said this is Tyler, he has autism and is non verbal. She hollers back into the play area, "ERIN".... so Erin comes running up.. teh lady mentions Erin is their special ed expert. So Erin goes.. hey, were you guys at splash camp last year? Um yep! She remembered Tyler adn me. She worked the camp last year, yeah, then I knew he was in good hands. The boys were there for almost 2 hours and did fantastic adn it was nice for Steve and I to be able to work out together.

Upon leaving there we went to lunch and luckily we've got that system down for the most part, then we took the boys to Toysrus to use their gift cards. Tyler got a bike helmet which he's not at all happy about, school is helping us work with him on wearing it. It's really becoming apparant to people in the outside world tha tsomething isn't quite right with Tyler due to his behavior. For example, Steve and I took turns hanging out with Ty at the front of TOys r us for the most part, wher ehe played with random toys but not the way normal kids would play. his nose is about 1 cm fron the floor as he crawls to chase a wind up toy for example. Then he screeches and squeals and runs in circles with delight. Got a few looks for sure.

We ran another couple of errands and ended up at stride right, they are having a buy one get one 50% off sale and we needed to get the boys their summer shoes. Tyler never functions well in stride rite, it's hot, bright lights, lots of people and kids in a small space, his idea of hell really. So he's melting down after we sized him (which by teh way the lady was awesome, we said right up front, Tyler has autism and doesn't understand shoe sizing and you need to be fast!! she rocked). so she got the new shoes and tried them on tyler as I was doing my kisses/breathes to his neck and he giggled but this was all because hew as starting to melt down. Then he albeit refused to put his old shoes back on and was screaming and flopping around, he kinda becomes liquid and you cant' even get him to hold himself in any position. WEll supermom next to us kept staring an disgust like can't you keep your kids in order. GRRRR.. I was just hoping she'd say something to me. I mean for petes sake there was a 2 year period where we never were able to go out to eat as a family, and not only had we done that but Tyler had been in a new play facility, went to a toy store and was awesome the whole time so give the kid who is on sensory overload a frickin' break already. So she was lucky..ddin't mention a word to me because believe me I had a comeback. Then speech mentioned something to me. She had a mom once who handed out cards to people looking at them and never said anything. I made cards a while back, and I really liked this idae, want to revisit it. Because I don't watn Tyler to be able to use "autism" as an excuse in life, I also don't watn Ben to constantly hear me tell people Tyler has autism, as if it's an excuse for bad behavior, not that it's not a reason. I just feel like if I can inform people quietly about the situation and provide a littel education in the mean time without the kids even knowing it, that's not such a bad plan. Ok so we got shoes (they are finally in different sizes) and went to the play area. Tyler went up to a complete stranger (mom) on the sidelines and wanted her cinnastick. I apologized for his behavior and she goes oh it's ok can he have it. I said unfortunately no, he's on a very strict diet but thank you so much. Then later he runs up to a lady on teh otehr side (must like the chics) and tried to pull her down to play horse with him. aweweee... and super dad Steve came over and played horse with Tyler :) what a great daddy.

Have been writing this update for a couple of days, cant' seem to find enough time to complete it. Both the boys seems to have colds, runny noses, coughs, a bit whiny...usually April is their last cold of the season, hopefully this is it :)

So Tyler's new medication

The new medication is on order. The names are spironolactone and naltrexone.

Sprinolactone: This drug takes several days to take effect. It is a synthetic steroid that acts as a competitive antagonis to alosterone. Boys with autism tend to have higher than normal levels of testosterone. Strangely enough, it's also used to treat PCOS (poycustic ovarian syndrome), hey, maybe I should take it too!

Naltrexone: is an opioid receptor antagonist used primarily in teh mgmt of alcohool dependendce (whoa). As you may recall from earlier posts, the biomedical beliefs of autism that these kids cannot break downt eh toxins and proteins properly in their bodies and they they become opiate type inhibitors in the brain, making them act as if they were on opiates, this drug essentially supposed to block this type of response. Or maybe the doctor thinks ty is an alcoholic.. jk of course.

Ok, here is an intersting link to an article about the potential that autism is caused by a virus.
http://www.huffingtonpost.com/david-kirby/is-autism-associated-with_b_316986.html

P.S. Ben woke up me at 4 a.m. to tell me he was taking a really really good nap! I said, good, keep sleeping. THen of course I couldn't fall back asleep..little bugger

3/24/10

2010-03-24T09:22:00.000-04:00

Tyler is almost back to normal :) Yeah!!!!!! That was a horrible month of feeling like we were losing him. His pediatrician/DAN doctor thinks he may have just been on yeast overload from the antibiotics and it was cuasing some chaos to his body. He was much more tolerant at speech yesterday than he has been recently.. he didn't do too much talking but hopefully by Thursday (he has 2 sessions this week), things will be 100% back to normal. We've definetly noticed an increase in chewing/popping his jaw recently so we are going to have to revisit the whole gum issue that school proposed. DAN doc recommens Spry so I'm going to order some of that and let school do their thing. THe DAN doc continues to seem a bit discouraged that we haven't seen greater improvements with Tyler through our biomedical treatments. It's been 2.5 years now can you believe it! So he's suggesting 2 new medications to try that have really no side effects. haven't had much time to look into them or even get them filled for that matter but I'll post more once I do the research. What I do know is that they are supposed to reduce inflammation in the brain and lower testosterone. Which by teh way, although it's very light, Tyler is the hairiest person! Oh and on another note.. Tyler now outweighs Ben. He's become a far greater eater than Ben and it's starting to show. Ben is just barely following the curve now so we are starting to talk to Ben about his eatnig habits and growing up big and strnog (he says he wants to be small and doesn't want to eat). We'll probably find a pediasure drink or something to help add some nutricious calories, I was just trying to avoid giving him a lot of dairy drinks since he has bowel issues. But I want to make sure he's getting what he needs calorie, fat, nutrient wise.

The party was fantastic!!!!! Everyone seemed to have a great time including us parents. So glad we choose that location. Maybe we'll do it again next year. Thanks for everyone who attended.

So the boys are trying out a new preschool this Friday. It will be the preschool that Ben goes to everyday and the one Tyler goes to when eh doesn't have any school at all. Daycare is off on Friday and Ty doesn't have school so we thought it would be a great trial day. I'm so incredibly nervous about the whole thing... but realize we have to move forward so hopefully they have a fantastic time.

We are continuing to get some good news on the insurance front and hope that what seems to be good fortune continues to come our way and we come up with a really good plan for the family for the upcoming year.

3/19/10

2010-03-19T16:08:00.001-04:00

We have found a childcare facility for both the boys, yeah! Tyler and steve visited the new place yesterday and both really liked it. Tyler had a great time and fit right in. I'm so relieved to have that out of the way :) Now our little guy is going to be riding the bus! So cute.

Oh, i was going to mention the other day that Ben has started the very typical sibing to an autistic brother role. When Tyler acts up or acts weird, Ben tells them Tyler has autism. I took the boys to Sams club the other day and had them both sitting in the cart. At check out TYler was kinda stimming on his new book (i had given him a bday present early to keep him content through the store) and the guy in line behind us was looking at Tyler. ben goes, he has autism. When my mom was over the other day and Tyler was upset on the floor and I was helping him through it, he told my mom that Tyler had autism. he's already starting to make apologies on Tyler's behalf. Ben is such a great brother.

A week or so ago I talked about the differences in the boys personalities and how I'm so happy they were divied up the way they were, i.e. Ben being so loving and caring. Well last night I was cuddling with Ben and talking to him about his upcoming birthday party and having good manners and being thankful, etc. I explained to him that some kids do not get to have birthday parties and some kids do not even get a single present on their birthday and there are some kids who do not have enough food to eat and they have to go without. He asked me why? So i then went into a discussion about jobs and making money, etc. and some kids parents may not have jobs right now or some kids may not have parents to take care of them. He goes MOM, you HAVE to help those kids!!! Aweeee... I gave him a big ol hug... i love his compassion. Before bed I read him the Lorax book from Dr.Seuss which is a very pertinent to the modern day america and needing to take care of our environment. So this morning he asked me why the fish were getting sick and had to leave the water in the book. I talked to him about pollution and chemicals and that we have to be careful about how we treat our environment. He goes MOM, you HAVE to help those fish!!

I'm pretty sure we've got a little humanitarian on our hands! People often ask if i'm more drawn to Tyler than Ben due to his disability..do I maybe have a little bit more love for him? The truth of the matter is.. Ben can make me crazy, however, he has my heart.. he often brings me happy happy tears because I feel like he is just an amazing kid with an amazing heart and is going to be amazing brother, friend, husband and father. What more can a mom wish for!!! Tyler has my soul.. he has altered my path in life, my purpose. As hard as it may be to be his parent sometimes due to all the worry, he has absolutely changed me for the better. I never knew I could love that strongly or be that protective. I was asked recently by a friend if during the study I was ever mad at all I had to do and accomplish during the day and if I ever said why me, it's not fair. I looked at Steve and we both shook our hands. I don't remember once saying it or thinking it. I just remember thinking fight, fight, fight....18 months isn't really that long in the grand scheme of things.. I also remember being tired and the toll that the study took on Steve and I but no, no, I definetly don't remember thinkign why me. More so, I was thankful that Tyler belonged to us that we had the means and the will to help him. They both are my little lovey's.

So on the verge of their big 4th birthday party, I say thanks, again, to everyone, family and friends who have stuck by us, and helped us nurture Ben's kind heart and helped us battle Tyler's disability. Those of you coming to the party, I would love to tell you this all in person, how lucky and thankful we are to have you in our lives but i'd never be able to say it without crying so I'll just tell you know. We may not have made it without your help. We have lost some family and friends along our journey and to be honest, we were warned that would happen, but it's not easy to see them go. We may seem self absorbed at times, but there are some days that we are just surviving, some days that it's hard to just to get our family through to the next day. And even though we've had a rough patch the last few weeks, things are looking up and today is easier than a year ago and I hope at their 5th birthday I can say wahooo.. life's a piece of cake:) So thank you all for loving us unconditionally and supporting our family.

3/18/10

2010-03-18T09:14:00.000-04:00

I was driving home from work on Tuesday and was thinking to myself, people alwasy say you are given only as much as you can take. And even though there are many many people who deal with more than me in their day to day life, I thought, I'm there. I've had enough for right now, so whoever is determining my ability to handle life and all that it throws at me, just want you to know,I can't take anymore right now. I need something good to happen soon. I need things to turn around. I was on the way home to celebrate teh boys bday and I wanted so badly to have a good night and for everyone to be happy. I turned the radio on and thought of a happy song I wanted to hear and it came on!!! yeah, i took that as a sign. Then I got home and both of my boys are playing with the neighbors outside, yeah! They had asked Ben to come out and play but then Tyler went looking for Ben, that alone makes me happy. (look at the pic of the girls in the jeep, Ty is chasing them) Then, yesterday at work I got some news regarding benefits and some possible additions to our medical coverage come July so of course that made me happy. I just needed some hope right now. And then I went to a child care facility yesterday to check it out for after school care for Tyler and it was fantastic! It looks like a great fit for him and they owner is giving me a bit of a break on the price as she knows we are struggling to make ends meet. Steve is actually going to take Ty there after school today to see how he likes it...

The best news.. it looks like Tyler may be on his way back. You see, even his complexion has been bad..really pale with a lot of blue undertones, etc. he's not only not acted normal but he doesn't look normal either. Well his complexion yesterday was awesome and there were no tantrums last night at all. In fact, I told him no to something he wanted to play with (Ben's new dino playdoh which Tyler can't have due to gluten in playdoh) and he was totally fine with me saying no and offering him something else to play with. This morning Steve said he was singing (tyler's version of singing of course) and ran up to hug him, etc. So we are hoping he's snapping out of whatever was ailing him which must have either been a lingering virus hanging out and wreaking havoc in his body or maybe he got into something he wasn't supposed to have, i.e. gluten or dairy or something and his body went into revolt.

So.. it seems.. our life is turning around :) Maybe I should had the "had enough" talk a little bit sooner but in any case, things are on an upward swing for us finally and I hope it continues. The boys bday party is this weekend and I want everyone to have a great time.

3/16/10 Happy Birthday Boys!

2010-03-16T09:52:00.000-04:00

4 years old!!! Here's hoping for a great day. Ben adn Grandma and I made a birthday cake last night. Although we made a gfcf cake, I doubt Ty will even attempt to eat it but I can always hope. He's not so fond of spongy textures for sme reason. We actually made 2 little cakes so we could sample one last night to make sure it tasted good :)

This morning, Ben reminded me just how much I love have kids and then Tyler quickly reminded me just how hard it can be. I woke Ben up this morning, climbed in bed with him and sang happy birthday, he said snuggle me mommy and pulled my face right up next to his.. so cute. Wished I would have had longer to enjoy the moment. Tyler was pretty good this morning before we left the house, not too much resistance, however, once we pulled into school, the story changed. He didn't even want to get out of the car, then he wouldn't stand on the pavement so I could shut the door, then he wouldn't walk. i finally got him into teh hallway near the class room and he wanted to ride on of the ride on roller coaster toys. I said no Tyler, it's time to go to class, well from that moment on he refused to walk. I never quite know where my responsibilities end and the parapro's begin but I definetly watn to make sure he followed through on my request to first stand then walk. It's tricky because you have to find a way to support him through the task but make sure he still does what you ask.. So we bounced.. one big bounce then I said stand (i.e. put your feet down and put weight on them instead of kicking them up). SO he would then we'd bounce. we did this to teh classroom and I handed him off and said "whew"... I was wore out. See TY started wearing me out at speech yesterday... he's very floppsy lately and very resistant to doing what he's asked. it just takes an incredible amount of energy to keep him on task and doing what you ask while keeping him and yourself safe and uninjured. THen when we got home.... things that would normally not bother him were and again takes a lot of physical energy to get him through it. One of our leapsters is broken and the other was in STeve's car. He brought me the box of games and I said Tyler it's broken and the good one is in daddy's car. I explained it to him many times and showed him the broken one which only frustrated him more, kicking screaming, flailing.... it was heartbreaking. Then again, same issue with taking care of his plate, I finally settled with me carrying him and him carrying his plate to the kitchen. Kicking screaming mad when getting pajamas on...until finally in bed. I laid him down, sang "hush little tyler" with tears running down my cheeks.. all the while thinking to myself "Melissa, pull yourself together". Been saying that a lot lately, "pull it together". I didn't want to ruin Ben's night. My mom was there to visit and we were all going to make birthday cakes and snuggle and watch a movie so I pulled it together and we had a great time, Ben is an excellent baker and somehow his whole hand ends up in the batter at teh end :)

So our meeting at school went relatively well. We are going to be getting a little bit more direct speech services for Tyler each week, not nearly as much as I'd like but it's a good start. They are also goign to start Tyler on PECS (picture exchange communication system) http://www.pecsusa.com/pecs.php hopefully this will help bridge the gap between his language comprehension and his language expression which has to be terribly frustrating. His signs have kind of fallen by the wayside over the last few months.

So tonight, I'm hoping for a good night. An intimate family affair of cake or non cake eating on Tyler's part, present opening and laughter. Wish us well, we could use a really good family night.

Happy birthday babies!

3/15/10 "fear"

2010-03-15T08:33:00.000-04:00

Wow, last week was not so great. To sum it all up... I'm scared for many reasons. Last week we found out our daycare provider is retiring, relatively soon. This sent us into a week of sleepless nights, financial planning, appointments, tears, etc. The boys have been going to the same provider since they were 6 months old. Speech, occupational and behavioral therapists have all been welcomed into her home not only to work with TYler but to show the provider how to best work and communicate with Tyler. She accepts all of Tyler's diet restrictions and cleans up after the kids immediately so Tyler cannot get into any of their crumbs, etc. She is understanding that Tyler does not nap and accepts him in the middle of the afternoon after he gets out of school. The comfort I have with her and my children is as if she were a grandparent. She once even came to a doctors appt to bring Tyler rice milk because they needed him to pee and he wouldn't drink the juice I brought and all they had was normal cows milk. She brought us juice and medical supplies when we were all suffering from the norovirus. Her daughters are the only babysitters we've ever had. Their family has become an intergral part of our family and part of our support group and losing that is heartbreaking.

The thing is, like normal, I don't really worry about Ben. I'm actually excited that this is forcing us to get him into a preschool setting which he really needs and before I couldn't figure out a way to make it happen. The problem we ran into, as with everything, is $$$. Daycare/preschool costs in the area are twice as much as we are used to paying and since we had already ran out of savings for speech and some of the other things we do for Tyler, it created a huge headache for us as to figure out a way to make it all work. So I'll cut to the chase and not bore you with details. We figured out a preschool for Ben close to our home that's affordable and should be a wonderful opportunity for him. We think we may have found a place for Tyler to go after school and when he's not in school he can join ben (too expensive for him to go to the other place full time i.e summer, etc.) So all and all we should be able to manage this schedule and be able to work relatively normal work hours too which is going to be nice.

My struggle right now.. is trusting Tyler with someone new. I went to a facility on Friday that we were thinking about taking Tyler. They had mentioned to stop by anytime. So I figured after TY got out of school would be perfect since that's the time he'd be getting dropped off by the bus. The facility is relatively small and it was packed full of napping kids on teh floor, the preschool room was also packed full of sleeping kids and I quickly realized that there will be nowhere for Tyler to go. He doesn't nap after school, and definetly would not be able to nap on a mat in a room full of new toys. we felt like we were a nuissance to everyone tehre for stopping by (well I did anyway), we got yelled at for a toy Tyler went to play with so we quickly left and realized that place was nto goign ot be a good fit for Tyler. At miss karen's the kids were all tucked away in rooms napping so Tyler was able to play quietly and not disrupt anyone. Plus I know Miss Karen never got mad at him if he wasn't sleeping. I felt at this place, he'd be creating a disruption that would possible wake up the other kids and upset the caregivers (who are so young) and then they'd get frustrated with Ty and since he can't talk or exspress himself, well I just worry about his well being. There was some level of comfort I have with Tyler going to the same place as Ben as Ben can alwasy be Tyler's voice. With Tyler going somewhere different than Ben, I will not be able to rely on that voice.

Plus, my biggest concern is right now, Tyler is a lot to handle. I wish I could go back a month and have that Tyler back again. Something has happen and we thought it was the B12 shots but now we aren't sure as his behavior is not improving. I fear what the future holds for us if he doesn't go back to normal. we were just getting excited about going on more trips to see family, possibly doing a family vacation, going out in public more, etc. If he continues the way he is.. i'm not sure. It will put an incredible amount of pressure on me. You see when Tyler is like he is now, I seem to be the only one that not only understands him but that he understands and that he seeks and that he listens too. So going on trips, public, etc. that puts a lot of pressure on me to keep him happy in a time when it's kind of getting hard, so that everyone else can have a good time, its just really tiring and the more "new" things we experience the harder it is for me to maintain his regulation. Plus then I miss out on interacting with the adults and also miss out on any fun ben is having. I just want the old Tyler back.. we were making such good progress.. I hope he isn't gone for long. We have an appt with his DAN doc/pediatrician next week so we'll discuss our concerns with him and I'm sure there will be new biomedical supplements to try which will be more money.. it's a vicious cycle sometimes. Right now, I'm just fearful of what the future holds for us. I'm trying to be optomistic and am very thankful we found a way to get Ben into preschool, but emotional and financially, we are struggling right now. I need some things to turn around for us and give us some inspiration soon.

3/8/10

2010-03-08T09:32:00.000-05:00

For those of you who are wanting to read some spectacular, uplifting blog entry today, you may wanna stop reading now. This is going to be an update about the reality of autism and juggling all that it takes to fight it.

Let me first begin by reminding you about Tyler's biomedical therapy. In an attempt to save $$, we have slowly been trying phase out certain supplements, etc. to see if we notice any change or regression, i.e. with the intention of making sure that each supplement we give Tyler is working. For example, Tyler takes a massive dose of a multi vitamin (spectrum completely by kirkman labs) and we also gave him vitamin C. Well we figured Tyler was already getting enough vitmain C in the vitimain and he loves mandarin oranges so we removed that from his regime. We also wanted to see if the B12 injectins were still working. He's been on them since he was 18 months old and now approaching his 4th birthday. They are expensive, righ aroudn $100/month (which is not much really until you figure everything else we spedn on Ty) and it's a hard thing to do, i.e. poke your kid every other night. So we phased it out to see if we saw any regression and we did! The first week we weren't sure if it was just because he had been sick and was on antibiotics or because we traveleed, but he was definetly less aware, less involved, and less chatty than normal. Then last week, he had a fever so we figured maybe it was the fault of the fever. Until this weekend, Ty was finally fever free (will get to the fever story later). Steve's mom noticed that Tyler was more aggitated than normal, he was less able to sit still and concentrate, definetly less talkative and overall just not our Ty. We decided that obviuosly the injections are still providing a significant benefit to Tyler and started them again last night. Below is a description of just how or why they work more so.

B12 (cobalamin) is a vitamin “family” with five unique family members that each do different things: a) cyanocobalamin; b) hydroxycobalamin; c) adenosylcobalamin; d) glutathionylcobalamin; e) methylcobalamin. Out of the B12 family, only Methyl-B12 has the ability to activate the methionine/homocysteine biochemical pathway directly. It is this pathway that is responsible for the body’s entire sulfur-based detoxification system. It is this pathway that is responsible for the formation of S-adenosylmethionine (SAMe), the universal methyl donor. It is this pathway that is responsible for the formation of homocysteine, the “crossroads” molecule that is responsible either to reform methionine and SAMe or create cysteine, taurine, and glutathione. Glutathione is the body’s primary intracellular antioxidant and is responsible for many detoxification reactions, most notably those that involve the binding and removal of mercury, lead, cadmium, arsenic, nickel, tin, antimony, and many other lesser-known heavy metals that also bind to glutathione’s sulfur group.

On to the fever. Tyler had to be held out of school last week every day but Monday due to a fever. There were no other symptoms other than a fever, but Tuesday night it spiked and reached almost 105, it was pretty scary. Knowing that he obviously has some neurological deficiencies, I'm quite protective of his brain! None of us got sick, which never ever happens if Tyler truly is sick. My hypothesis (and shoudl research to see if other parents notice this) is that Tyler's body does not react well to antibiotics. Not that I don't believe in antiboitics, I know they are necessary at times and I know that there have been times I had been so sick that I may have ultimately died without them, however, I believe they fight the bugs, but actually weaken Tyler's system. He typically gets sick after he goes off antibiotics which is then the reason he went on them, how's that for irony. Ok anyway, that's the health front. We are all healthy at the moment, hopefully the boys can stay that way through their birthday.

Well our flex spending has been depleted, our savings depleted, and the ingenious plan I had that was going to save us $400 a month which is conveniently how much we needed to pay for speech, well that also fell through. ARGH. This on top of the fever last week and work stressors and other issues didn't make me a very happy person. I was gettign emails about upcoming summer programming and phoen calls about other services we had once inquried about and it was really getting me down. I want all those things for TYler but if I can't even afford speech, not sure how i can pay for all the other extras.. which in my mind aren't really extra's anyway, they are necessities. My mind was a bit of mush this weekend where i decide to not think about it for a bit, I needed a break from constantly trying to come up with new ideas. And then.. a guardian angel came through for us and gave us enough funds to pay for another month of speech yea! Kinda got my mind back in the direction it needed to go.. ok what next, what else can I do or what plan can I come up with to make it work.

Which brings me to my next though. we are really interested in doign HBOT therapy, especialyl since Tyler's progression on biomedical intervention so far has been relatively slow going, nothing has made a significant improvement, all just gradual improvements. So we plan to talk to his pediatrician more about this at the 4 year wellness visit with the pediatirican. The problem with HBOT is that it's expensive. $20,000 to purchase teh machine, $5000 per month to rent or you can pay by visit and go to a HBOT facility, well as you know our schedules are already crazy and it's something that you have to do daily around 30 times to see an improvement and its usually about 45 mins I think? anyway, I heard of a non profit facility in NC that offers it and free board for the time you are there. I also found out that if prescribed by a peditrician (which it has to be) that i could be covered under FMLA to take the time off work to take Tyler if we decide that route and this is only $2800. They also have fundraising ideas. So it's something I definetly want to look into more and make sure it's something worthwhile.. and again how to pay i"m not sure but we'd do fundraising. Maybe we could raise enough to rent one and do it from home who knows but we are just needing to prioritize what works and what doesn't work adn where we can get extra funds to try new things in addition to what we are already doing. You never know what combination of what therapies is going to work and I just want to make sure we remain open minded and committed to trying. On this website you can find out more info and see video about HBOT http://www.drneubrander.com/dev/index.html

We have an appt with TYler's teacher and therapists at school this week to go over Tyler's progress towards his goals and discuss concerns, etc. I'm looknig forward to this meeting and will update more once we talk to them.

3/1/10 - Happy March!!

2010-03-01T08:03:00.000-05:00

Yeah, it's March, spring is just around the corner, yippee! Which also means that the boys birthday party is getting close. Can't believe they are going to be 4, what a whirlwind those 4 years have been! I can say with great happiness that we've come a long way (happy to be saying this a lot lately). This weekend was another testimonial. We had intended to visit my aunt for a weekend over the Christmas break, however, due to their kitchen remodel, we had to postpone the trip until this past weekend. It's been a very very long time since we had a weekend away as a family. It used to be exhausting to make it all happen and more work than it was worth. Even our attempted camping trips last summer were exhausting and the car ride to and from those places seemed to be my only respite. But we feel that Tyler's ability to cope with new enviornments and changes, sensory issues have improved so much that he was ready so we gave it a whirl this weekend and it went great. It was so nice to travel as a family to visit family again. There was a time when we struggled to get Tyler to eat one or two bites of food when we were out of a normal environmental. Now he's eating on his own at a new table/chairs with all new surroundings and doing great. We still do have to haul all of his "stuff" with us, including a toaster since he doesn't like his cereal or yogurt anymore, and he can't have eggs, we give him a lot of french toast sticks and waffles (all gfcf of course). So he has his own toaster to avoid cross contamination with gluten from regular bread/waffles.

Anyway, the weekend was great, my aunt has a piano so of course Tyler is in love with that. He did great hanging out with everyone, including people he didn't even know. Ben also had a great time. In fact, the boys went on their first snowmobile ride and had a great time. I'll post pictures soon.

We still struggle with our inability to get Ben into preschool. We couldn't afford it this year and even if we could afford it, we were unable to figure out a schedule that worked with our schedules and still accomodated Tyler's schedule. It broke my heart to have to choose one boy over the other. Ben gives me many reminders that he really needs to be in a school in a structured/learning environment and each time I feel a bit more guilty about not being able to get him what he needs. We do try to accomodate it with other actvities with peers such as enrolling him in soccer. I think we'll do swimming next. We also try to get him out and about each weekend to some sort of fun play place so he can interact with other kids, etc. Ben is definetly egocentric.... yet he has a heart of gold. Kinda of hard to explain. He's definetly the sensitive one in the family. he gets his heart broken easily but also knows how to melt your heart. Has a habit of saying "mom, you are cute!" when he's in trouble. Anyway, when he talks about any plans/future, he alwasy talks about his brother and including his brother in his halloween costume ideas, the fact that he wants us to all stay home toether every day and grandma can go to work for us, all those things he alwasy says mommy, daddy, and my brother. They don't play often but I really think Ben is starting to get that brotherly "protection" feeling and also beginning to understand more about Tyler's disability. Anyway as much as Ben's sensitivity can be somewhat irritating, I find that Tyler is pretty lucky to have a brother with a heart of gold. Which brings me to an article I wanted to share about the burden siblings bear in regards to autism. Carrie always told me that one day ben would be Tyler's best therapist. I think she may be right. Ben's definetly a lover.. not sure there is any fighter in that kid:) So I think the cards were played right.. Tyler needs to fight with everything he has to overcome autism and Ben needs to love and have more compassion than most siblings to accept his brother with special needs. Oh how I love my babies!

Ok, so here's the artcile i wanted to share about all of it:

A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and "typical." And I'm the parent — most of the time. Before we got to the store, Joey said to me, "If Nate has a tantrum, I can handle him. You just focus on buying shoes. I'm better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense."

None taken. He's absolutely right.

The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings. (See six tips for traveling with an autistic child.)

As their parents, there's a lot we can do to help. For starters, we can educate them early on, by explaining their sibling's disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn't have to be "thought of as being geared only to the involved child," Melmed says. In his office, Melmed reassures siblings that "other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common." He also instructs parents to reaffirm that message at home. "Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal," he says.

A great way for kids to feel "normal" is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. "The workshops give these kids the opportunity to realize they're not alone," Snyder-Vogel says. "[We play] a lot of games that help them interact and problem-solve with peers. Kids don't even realize they're getting support."

At a recent Sibfun workshop at the Jewish Community Center on Manhattan's Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.

Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. "These siblings have seen what it's like to have a hard time in life," says Sandra Harris, executive director of Rutgers University's Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).

There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.

2/24/10

2010-02-24T12:16:00.000-05:00

Oh my goodness, sorry it's been so long since I've written in the blog, I can't seem to find the time which makes me wonder how on earth I found the time during the study.

Let's see.. both the boys had bronchitis which kept Tyler out of school for almost a week and got everyone sick but me (thank goodness); everyone seems to be on the mend now though. But we ended up having to have speech on a different day last week due to Ty being sick and it was later in the afternoon than normal; he was not enthused. Had to work really hard just to get a quiet "ah" out of him. The therapist had him sitting at a chair behind a small table which was annoying him and he kept tryign to get up. I commented on how it was the safe barrier, i.e. when Tyler is really not enthused to do "speech" he goes after her kinda. Grabbing her face or head, etc. So I asked her if anyone had ever drawn blood and she said, are you kidding? Apparently she had some twins that used to beat her up quite good, she showed me some scars. Tough line of work those speech and OT's have.. she said they don't warn you about this in college... of course she was smiling and quite fine with all of it. A while back I posted a blog saying how speech compared trying to get Tyler to talk as trying to get me to sit at a piano and play a masterpiece. It's that hard for him to do it and therefore incredibly frustrating, then when you can't verbalize your frustration with words...well sometimes the behavior can turn a bit ugly... so that happens at speech. Good thing he's so darn cute.

So on to my next thought... I had some training recently and spent a lot of time in the car. I listened to a seminar from Temple Grandin on youtube while I was driving and something she said has really stuck with me. She said to never take away an opporutinity that may be a career, embrace those interests and talents. That got me to thinking about how I prioritize everything for Tyler. oh if I could only see into the future.... Tyler loves the piano.. I started thinking in the grand scheme of things what's more important to him (not me). We can only afford so much, wishI could do more and we are constantly seeking ways to enable us to do more fore both boys but in terms of one on one therapy/lessons, it ads up! So is it more important that Tyler talks or is it more important that he has something he loves and is passionaite about that could one day be a career. So if I had to choose between speech and piano lessons, what is the best thing to do for Tyler? I feel that if he talks his life willb e far less frustrating and he'll have a better opportunity to related to peers, etc. I feel piano will make him feel comfortable, give him a sense of success and make him happier. Anyway, Temple if you do not know, has autism, she's amazing, all the list servs are buzzing about her right now because a movie just came out on HBO about her. Anway, I figure there is no one better to listen too than someone who has autism, who knows what it's like ot be that frustrated child that cannot talk, that knows how it feels to hear loud noises or be around bright lights. It's great that she can verbalize all of this for me to get a better understranding of how Tyler feels and see's the outside world. Anyway, I guess I just typed a lot about nothing, just feelings really. No right or wrong answer, just me battling with myself on a daily basis of what's best for Ty, and what's best for the family and if I'm making the right decisions.

So Ty is on break right now from school, once they start in session, they are going to start more intensely potty training Ty. The teacher says Ty is so smart that he should catch on quickly. yipeee.. can't wait to be done with diaper expenses. Ben is doing awesome although he still sometimes throws a fit about having to use the potty, it's typically in the morning. He's not a morning person by any means.

We are busy planning a birthday party for the boys. Ben wanted a gi joe party so that's what we are doing. Excited once again to have a party that incorporates both boys needs and where everyone can have fun. It will be at an inflatable place again this year but at a different place and it has a lot more fun inflatables than the last one and a separate party room. We are once again hiring someone to watch after Tyler during the party to make sure he doesn't get too curious about the mechanics of anything while we aren't looking and to make sure that he doesn't get stuck somewhere holding up lines or get overstimulated and take it out on anyone. He's been quite "floppy" lately.. I started calling him flopsie and that kinda happend at a birthday party we were at last weekend at the same place coincidentally. He just kinda flops around if he's overstimulated. So anyway there will be someone there to recognize all those things and then I'll give her tips as to how to handle each type of behavior. Gonna probably skip the gcfc cake this year as Tyler will not eat it anyway, never has. So we'll just do the normal stuff and normal snacks for everyone. Trying to relax a little about it all since Tyler rarely eats new food anyway, why spend the extra money to make special food.

Steve and I are both feeling pressure at our jobs because of our work schedule to accomodate Tyler's school, therapy, daycare, etc. Grandpa is awesome cause he comes and picks up Tyler and takes him to daycare for us every Wednesday (thanks grandpa!!) to help ease our schedules. We are lucky to have have his help. It really is amazing how much autism affects our lives, relationships, etc. We have friends that have totally given up on us over the past couple of years, family that gets frustrated with what seems like self centeredness on our part, our work gets frustrated and sometimes I feel like it's a vicious circle. Damn autism anyway. So my dream.. other than a full recovery of course, would be too have all the money in teh world to get Tyler the best of the best help and schooling, to be able to spend more time with Ben and the family as a whole, and to lessen the burden Steve feels at work. Money may be the root of all evil indeed..ha ha.. really though, I don't believe money makes people happy, however, it would make my life a lot easier. We really aren't ever able to fully accomodate anyone's needs, we just alwasy seem to get by.. in fact, it's amazing the difference just one other person makes in our life.

Was talking to Steve the other day about TYler's progres and how we feel he's slowed down a bit and we are trying to figure out if it's just a natural lull in his progression or if it's due to something more. We realized (especially after this weekend), how much we need grandma's involvement in our lives...When she's around Ben and her seem to be glued at the hip. This allows me to have uninteruppted, guilt-free time to work with Tyler and frees up Steve to get stuff done around the house, laundry, errands, etc. Grandma had been sick for quite some time and unable to be at our house or help out much until this past weekend and the differece was phenominal. She also allows us a night out as a couple with a free babysitter which is so fantastic. THANK YOU GRANDMA!!!!! We are so lucky to have such involved grandparents.

I'm just rambling on today..sorry. I'll wrap it up. SO if I could summarize the last month, it's pretty much illness, pressure, stress, financial issues, and all together just being in survival mode. I'm ready for a change. Im ready to get our family to a happier more peaceful place.. and working actively to make it happen.

2/1/10

2010-02-01T10:08:00.000-05:00

Ben is still doing awesome with potty training. I don't remember the last time he had an accident :) School thinks once they begin the positive practice stuff with Tyler at school, that he's so smart, it won't take him too long to potty train either. Oh my goodness, is it possible that by the time the boys 4th birthday rolls around that they'll both be potty trained??! Oh the savings :) Speaking of savings, we;ve been really trying to get creative with our finances to maintain everything with the least amoutn of debt possible. Our flex spendign iwll be gone after today's speech session, used it all up, so we had to figure out a way to free up another $400 a month to pay for speech and I'm happy to say we figured out a plan. So it's not like it's extra money in our pocket each month but at least it's not another$400 of debt each month either. Have I mentioned lately that it's all worth it?
All of our hopes, plans, dreams are coming true. We are making headway, we are going to be able to do normal family activities. There were times when normal day to day tasks like eating, going for a walk, etc. were very difficult tasks for our family. Along the journey, many people have thought maybe we were doing too much, or maybe we were neglecting Ben, or maybe not focusing on our marriage enough, or maybe taking on too much stress and therefore too many health issues, or maybe over the top with the diet restrictions and organic lifestyle, etc. I'm happy to say, I'm glad I stuck with my convictions. I knew then as I know now that the more "normal" of a life my family can lead the more happy we will all be. If Ben can play with his brother like most are able too, the hapiper he will be. If Steve and I can take the boys on a family camping trip and enjoy watchign the kids frollic in the lake and then relax together with a beer by the fire, the happier we will be, and the more chances Tyler has to communicate and be normal socially, the happier he will be. So Saturday night, it was one of those moments when I felt like .wow...yeah, this is awesome. All of that energy, money, heart ache, crazy schedules, emotional pain... all worth it. So what happend? Ha ha.. nothign monumental. that's just it, it was normal. We got a gift certificate to Olive Garden for christmas so we went there Saturday night for dinner. Yeah I still do a good job of packing up activities for the boys and without that we'd be int rouble, however, Tyler did awesome! The place was packed, in fact we had to wait for a table. So we just hung out in the lobby with about 30 other people and the boys sat on teh floor and played, we even entertained another child who was waiting. We got our table, got out TYlers food, ordered our food. There was a moment when I looked at Steve and said, wow.. I'm so thankful for this. This restaurant is packed, and loud and we were in the midst of it and had to wait about 20 mins before we even sat down. Then with salads and then dinner, Tyler tolerated the restaurant atmopshere for nearly 2 hours. He only asked to get down at the end of the dinner when he was just tired and wanted me to hold him. Teh place was full of families with young kids and it was just really great to feel like we fit in and could do those things too without a lot of worry.

So yeah, it's worth it.... so worth it.. every tear and every dime are adding up to my whole family being happier... there is no price tag on happiness.

1/27/10 Babies

2010-01-27T08:26:00.000-05:00

Oh my...my babies are definetly growing up. Ben has had dry pants (no accidents) all week :) He's doing so well. School wants to try a new approach with Tyler but I told them that I wanted to give Ben a couple of weeks to soak in the attention he deserves for being such a big boy before we move the focuse and therefore attention to Tyler. I don't want Ben to regress at all when he sees Ty get all thep otty attention, potty training Ben has been a year in the making and I want to make sure we keep moving forward :) Oh and 4T shirts are almost too short on them now. I can't believe how much they've grown since fall.

On a down note, Tyler is begining to be restrictive again with what he will eat. Over the past 6 months, he's stopped eating some of his favorites such as spaghetti, yogurt, cereal, pretzels, cookies. He'll eat meat(chicken, beef, hot dogs, fish sticks, etc) no problem and oranges and pineapple but I can't get him to eat any potatoes other than french fries, no rice. He's down to one or two things for breakfast. Oh and he still likes his homemade pizza but in general we may have to start addressing food issues with him again which I was really hoping we were over that hump. The good news is.. he eats very well the few thinsg he does like so I want to make sure that we don't make it a control issue and I have to remember he is 3 and many toddlers restrict their diets to their favorites so hopefully this is just a normal development issue and not something more sensory related where he starts hating food again.

January 21, 2010 - Brotherly Love

2010-01-21T12:37:00.001-05:00

It's been almost 4 years in the making but I think the boys are really starting to care about eachother. Tyler is definetly more interested in what Ben is up to than he used to and also initiates play with him a bit more. Ben on the other hand even though he doesn't come out and say he loves Ty Ty, he says a lot of things that shows just how much he cares. For example, a week or so ago, I asked Ben if he'd help me when I get older and it's harder for me to do things on my own. I asked if he'd help me fix appliaces and take care of me if I'm sick, etc. He said, "I can't, I'll be taking care of Ty-Ty, I'll need to make sure he doesn't get hurt!"... aweee....... That's a pretty mature response from a 3 year old, mind you we've never ever talked to ben about having to take care of Tyler or anything like that. Then this morning, I checked Tyler's diaper to see if he had pooped before we were gettign in the car to head to school. Ben says, if he did poop, we have to take money out of my jar? (bens reward system) I didn't answer. THen Ben said, if he's dry, to we add money to the jar? He goes, hey, I want to share my money and my toys with Ty-Ty. He earns money for going potty to buy toys. we tried to rationalize with him that we would have more money for toys if we didn't have to buy so many diapers. Ok, more on potty training later. The point is, he's really starting to say things that show me how much he cares about Tyler. Even when he talks about Star wars characters and who will be what, he gives Tyler a character name. Oh and yesterday, they held hands on the way into daycare :) Oh my goodness, my heart is totally gonna melt when they actually start laughing and playing together on a daily basis. I guess I should be thankful that they weren't that way from the beginning.. because now I will know just how beautiful it erally is since I've waited so long. Sometimes experiencing both sides of any situation makes you appreciate life a little more.

Ok, on the potty training front. yeah, carrie! Oh how we love miss carrie and wish she was a permanent resident in our home! Her expertise is helping us in our year long quest for Ben to be potty trained. She said diapers were his biggest reinforcer and it wouldn't matter what else I did reward system wise, the diaper would win as long as he had it on. So we switched him to underwear over the weekend so the messy days would be at home and not daycare. By the time he went to daycare on monday he was doing much better and yesterday he only had one accident all day and he caught himself, it wasn't even enough to get his pants wet :) Finanlly!... and it comes just in time, our flex spending runs out this month so we have to find an extra $80 a week to pay for speech.. not buying so many diapers will definetly help!

As for Ty, he's becoming more social on his own (without prompts) meaning he's starting to say hi (wave not really say it) and greet people (hug) or say bye (wave) all on his own and really seeming to enjoy the interaction. Last night I did tell him to say good night to Steve na dBen (it as family movie night and they were watching the movie but Ty was tired) and he waved and I said give them kisses and he blew them kisses. So sweet and so smart. Last night he ran over to the couch cause he got excited about the tv but there was still pizza sauce on his hands from dinner so I said Tyler dont' you dare touch that couch. Of course he understood me. he really understands so much of what we say to him now, it's just awesome. He's donig so well.. I was mentioning to Steve last night how I'd really like to know what has helped and what hasn't. If I could go back in time and see his future if we hadn't done anything extra to help him or if we hadn't done teh biomed or if we hadn't done the study, etc. Where would he be now. How much of his abilities are coming naturally and hjow much are coming becuas we are intervening.. Any wya about it.. he is SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO much better than he used to be and we are really excited about the future of our whole family.

xoxoxoxo

1/19/10

2010-01-19T12:37:00.000-05:00

At our last parent support group meeting at Tyler's school we talked about our hopes and concerns for the upcoming year but also reflected back on 2009. The most significant change we see in Tyler compared to a year ago, is his ability to cope in a variety of situations. Whether it's giving up a preferred toy, going to a new surrounding, being around new people, or being around large groups, lights, etc. He seems to be able to tolerate much more than he used to, and as a result, we are able to do much more than we used too. This weekend was a perfect example. Ben started soccer this past Saturday. I wasn't quite sure how Tyler would handle the new surrounding and I also wanted to be there to support Ben in this new endeavor as I knew he would be anxious about it all. So I made sure both Steve and I would be able to go. We brought a bunch of toys for Tyler to play with and he did great. NI fact we didn't even have to get out anyu toys for the first 15 minutes or so, he was enjoying watching the kids. Then he played with his toys for a bit, then he got up and ran around the gym and we let him since it didn't seem to be harming anyone. Anyway, I realized that we could totally manage soccer with one parent if we had too. There was a time not too long ago that I would have had to find ways to support Tyler just getting out of the car and walking to an unkown place and into unknown doors, etc. I would have had to transition him with objects, coaching, swinging him, etc. Now I just tell him what we are doing and lead him in the right direction and he handles it all pretty much like any other kid. Wow... it's amazing to think we've came that far. Ok, and the second biggest thing is that Tyler has become a fully independent eater, FINALLY :)))) There are occasions when I want to sneak in a green vegetable or something I'll hide it in a bite of pizza or something that's really liquidy that we'll assist but in general, he's eating all on his own. AMAZING. We still have a ways to go in other areas obviously...speech of course, peer interaction/socialization, and his sensory issues with food are still an issues but now he's more leaning towards spitting out the item vs. vomiting which is obviously far preferred :)

Since we couldn't afford to get Ben into preschool and couldn't figure out a way to make the schedule work, we agreed to get him involved in more social activitse and that's how soccer came into play. In this soccer class, they learn drills adn how to follow directions and of course there is that peer interaction. Ben had a great time at first but then seemed to get a little insecure about it all and the middle of class was hanging around us and then we made him go back and join circle time at the end. So all and all it went about how we expected. we really want him to start learning he can't do what he watns when he wants and we want him to learn to be patient, and play with kids who he's not familar with. You see, Ben hasn't had nearly the socialization of other kids his age becuase of Tyler. We tended (for the reasons mentioned above) to avoid a lot of activites becuase it was just so darn hard to get Tyler there, keep him calm, etc. and then it seemed that no one had fun when we actually decided to go somewehre so it wasn't worth it. Therefore, Ben really hasn't had much opportunity to socialize outside of daycare, and there's only one other child there his age. WE definetly hope to get Ben into preschool in the fall. Especially now that we seem to be making headway with the potty trainign. We've done away with diapers except at bedtime/naptime. He seems to have less accidents this way. I checked the blog from one year ago today to see what my main discussion point was and it was how we were starting to potty train Ben.. 1 year later, sigh.

In terms of speech, had a dream the other night that Tyler said "bye bye" and then he said "baby bear, baby bear, what did you see?"..... it was a great dream. i think I am having them more often now because he's making more sounds now. He's really trying hard to make the consants.. we've been working the "b", "l" and "m".... lately and he's doing very well.

2010-01-07T08:35:00.005-05:00

Here is the video I mentioned the other day. The video is of Ben but you can clearly hear Tyler say "ma-ma" twice and run to me. I was just so astonished when I saw this video. I do not remember him having this skill until nearly 6 months later which was an accidentally "ma-ma" for the most part. Now he says mama with meaning but it's more a ma, ma, ma, ma, ma and it's not consistant. So he is what 46 months right now... so it has taken nearly 29 months to regain that skill. Anyway, I have watched this video probably 30 times now, I love seeing/hearing him say mama :) Not to mention Ben is such a ham and darn cute in the video.

Tyler sometimes wakes up before we are ready to get him so he just plays in his room. When Steve opened the door yesterday, he found TYler playing with the alphabet cards. Steve went back to finish getting ready and when he came back, Tyler had all the cards laid out like you see, in teh appropriate alphabetical order (a couple of the cards have gone missing overtime so he just kept on going to the next letter). He's such a smart little dude.

Remember months ago how I mentioned that Tyler's new DAN doctor mentioned how he'd cnosider Tyler to have "mild" autism.. music to our ears of course:) Anyway, I loev it when professionals who work with Tyler tell me how well he's doing. I of course think he's doing great compared to who he once was, however, I don't often see other children with autism for longer than a minute or so and I really do not have anything to compare and standardized tests put him as moderate/severely affected which alwasy bothers me. I don't believe tests are comprehensive of his skillset especially since they are often admnistered in an non-normal setting by people who do not often interact with Tyler, etc. Ok I'll wrap it up, my point it, speech made me feel very good the other day. I can't put my finger on exactly what was said that put a smile on my face but just a general concensus that Tyler doesn't have a lot of issues, he's a very happy little boy and he tolerates a lot of "pushing" without much behavioral issues. Our hope as always is that one day Ty will be indistinguishable from his peers. That would rock! Anyway, more video. This one of speech shows Tyler being very tolerant of her. She's constantly plugging his nose and moving his mouth, etc. and for the most part he's cool with it. I also am attaching a video of Tyler at the table. I'm trying ot get him to make the "l" sound. Sometimes he does it first try and sometimes I can't get it at all, but as you can see he's definetly trying.

Oh and the other video is of Ben and Steve playign sword fighting on the Wii.

1/4/09

2010-01-04T08:34:00.004-05:00

Happy New Year All! Our plans for this holiday season seemed to somewhat fall through. There were illnesses, remodeling, sick friends, etc. that just seemed to keep throwing a wrench in our holiday plans. We decided to take the boys to a water park over break to get out of the house and do something fun since our other plans didn't' work out. I think they were about 20 months last time we took them to a water park and it was very difficult. This time was much easier, although still couldn't have been accomplished without two parents. Ben isn't nearly as interested in the water as Tyler is. This particular park didn't' really have a pool to swim in just a little kids area, a lazy river and then a big activity center full of slides and water spouts. Tyler loved the water slides, hopefully you can see his huge smile in the picture. Ben seemed to splash a round a bit here and there but over all was bored and kept telling me so. He was however really excited that he got to sleep in a bunk bed on top, that was pretty cool to him. We also played in the arcade. All and all Tyler did great. There were a few moments of uh oh what do we do, like when eh wouldn't eat his cereal for breakfast and it's the only breakfast food I brought for him. Luckily the buffet at the hotel had sausage he could eat so I just filled him full of sausage. Everywhere we go we have to make sure we have food for Tyler. This hotel was great because it had a fridge and a microwave so we could make all his food and store it in our room. Oh, and he discovered Steve's blackberry while we were there and he thought that was pretty cool too! Ps as you can see in the pic, the boys aren't happy which they rarely seem to be when we try to take their pic together, Tyler was not so fond of his wrist band for the water park in hindsight, I should have put it on his ankle. oh well.

It's weird how boys do not play together, I don't think anyone understands it unless you see it, most people assume not only brothers, but twins, hey they must have a ball. My kids don't really like each other much. But Tyler for some reason really wants to play with Ben in the bathtub and I think it weirds Ben out a little so while we were at the water park and I had no bath toys I was trying to come up with a Way o get both boys involved in a game. So we played games such as simon says, however I'd just say "do this" much easier for Tyler to understand and tap my head or something or make an "llll" sound. WE are also trying to help Tyler be aware of his facial features and where they are, he has trouble with self awareness of his face. So I'd ask them to touch their nose, touch their ears, etc. Both boys were really excited to play this game and it was great cause Steve witnessed it so it's something he can do when he does bath time as well. Boys are playing together, Tyler is learning, it's a win - win!

I think I've mentioned before that Tyler can spell his name and tries to write it. The other day I was coloring with Ben and Tyler brought his foam letters to the table and all on his own put them together to show his name.. I looked over and then q quickly got a camera to capture it. He also is really liking his floor puzzle. He has an alphabet floor puzzle and he knows where all the pieces go, however he struggles with eh fine motor skills to actually get it to fit perfectly so we are helping to show him how to shimmy it in place. We are also using the puzzle to help him learn the sign language letters of the alphabet as well as making sure has a good understanding of the colors, animals, etc. that are shown on the puzzle. We want to make sure he knows for example that a zebra on that puzzle is the same thing as a zebra at the zoo which is the same as his model zebra that make noise, etc. he's doing great, sometimes he knows animals that I don't even know he knows. I'll say, where is the worm, and he points to the worm. He's really doing great in terms of his receptive language.

So anyway, back to reality, back to work, school, daycare, etc. and a new year which will hopefully bring a lot of health and happiness to my family and yours.

12/28/09

2009-12-28T12:38:00.003-05:00

I hope everyone had a very merry christmas! ours was pretty good. I should check the blog from a year ago and see just when our crazy stretch of illnesses began cause I fear we have begun. Last week Tyler was vomiting on Wednesady, then Steve on Friday and then this past week, I was vomitting on Christmas night and then Ben on Saturday and then yesterday I caught a cold. Is this a prelude to another bad winter? I really hope not!

In terms of christmas day, the boys did great, Tyler again attempd to open presents and was never once overwhelmed by any of the chaos. I attached a couple of pics from christmas.

Christmas night after the boys went to bed but before the vomiting began I was going through old pictures on the computer and came accross a few of these ones of Tyler and a very intersting video. The one pic of the newborn baby is Tyler. It's the pediatrician's hand. We were very concerned about the rash on Tyler's body which we were told was common in newborns, however, Tyler's never went away. Picture all the way up until we began the gfcf diet had him very rashy. It's amazing how the diet cleared that up. We often wonder what supplements are workign which ones aren't workign, which pieces of biomedical help, etc. in an effort to do whatever we can to keep costs low, but I'm certain the gfcf diet has been extremely helpful. As for the video, hopefully I can get it posted soon, but it was an eye opener for me.

I was watching a video from August 2007, so the boys were about 17 months old. The video was really of Ben, dancing and playing with a ride on horse, he is such a ham. However in the video, you see Tyler playing, then you see him run by the camera and towards me and say Ma-Ma, Ma-Ma and run up and hug me. It was amazing.. I watched that portion of the video repeatedly. I don't remember Tyler babbling, I don't remember him being "with it". I just remember always worrying something was wrong. I told my aunt of my discovery and she said she remembers talking to me about it. She said she remembers we were thinking, maybe he'll come out of it, maybe it's just a sensory issue, maybe...I can't tell you how many questionnaires I've filled out saying that he didn't regress, but clearly in this video he was saying ma ma, intentionally..s miling and running to hug me. 1 month later, 18 month vaccinations given while Tyler was sick and on antibiotics, tyler lethargic for 2 - 3 days and vomitting... was that it? The moment that could have changed things? Don't get me wrong, Iw as worried about Tyler and there was definetyl something wrong with him very early on but clearly the 12 month and 18 month vaccinations caused him significant hardship and now after watching that video, I realize regression. Maybe I just didn't want to admit it at the time. The good news here.. children who have regressed at some point, seem to have better success with biomedical improvements, at least from what i've read so looking at the positive side and since i can't take anything back, I guess that's all I can do. I can say that I could not stop crying when I saw that video, I wanted to go back to that moment and embrace it, and hold him and never let go and not get those 18 month vaccinatiosn and continue our path to a recovery for him and who nkows if things would be different now. It also made me have empathy for all of our dear friends and those I do not even know, who had normal/typically developing c hildren and then suddently lost them to the world of autism. Devastating, I can't imagine. My heart aches for them cause TYler had lots of issues but just seeing this video and glimpse of normal made me cry..can't imagine having a whole year of a normal child and then suddenly have them dissapear into their own world.

Anyway, on a lighter note.. the boys were amazingly good yesterday and we keep pushing the envelope with Tyler and getting out as a family and doing "normal" things. We did a major shopping trip to sams club yesterday and both boys were awesome. We went to pay at Mcdonalds first to wear them out a bit and Ben was on cloud 9 playing with the other kids and Tyler tolerated the chaos very well, seemed to not care and enjoyed just running in circles in all of the chaos. They were so good. We decidd to start runnign more normal type errands and visits with both boys as I think Tyler is ready.

Happy New Year Everyone.

12/24/09

2009-12-24T08:47:00.002-05:00

Ty's sleep habits are kililng me lately.. up late one night, up early the next. I wonder if he's going through a growth spurt, and he wakes up achy. He has definetly been eating like a horse! This morning he started to chirp around 4 a.m., I'm a light sleeper so I can't fall asleep if he's babbling, and then by the time he fell back asleep I was wide awake. Good thing he's so adorable :)

Have a merry christmas everyone.

12/23/09

2009-12-23T11:02:00.002-05:00

Merry Christmas Eve Eve! So lots of good news to report. The boys had their first official dentist appt yesterday and they did great. We practiced the "open" command with Tyler a lot so he'd be prepared to open when the dentist asked him too. He wasn't too fond of the light in his eyes but say through a good teach brushing none the less. The doctor was very happy with Tyler's teeth. Ben also was good, he likes doctors for some reason, however Ben's teeth aren't' as great. He was blessed with the Loomis teeth which means he has big teeth and they are all squished together. He'll likely eventually have to have some teeth pulled to make room for his bigger teeth later in life. Not a lot of room in his mouth. Also since he's a carb junkie and that type of food tends to "stick" more to your teeth, he also has a bit of staining but all and all a good visit. It's strange making dentist appts. I feel a bit like a genetic mutant.. Hello yes, I'd like to make an appt for my boys. Ben has a VSD so he'll need antibiotics before the appt., can you call that in? Oh and Tyler has autism and is nonverbal, he may bite fingers and if given a new texture/flavor, i.e. toothpaste, he could possibly vomit. Lovely..sorry boys, I swear I was a very protective pregnant person and followed all the rules. So the dentist did follow my suggestion, as soon as Tyler as given a bit of toothpaste he gagged, so the dentist rinsed it off and just used water.. much better for Ty.

We also had a very peaceful Christmas with Steve's dad's side of the family. First time that we didn't at all feel anxious about Tyler once we were there. Tyler did fantastic. Last year they had kind of sectioned off a room for Tyler when he gets overstimulated and also Tyler and I sat in that room during present opening so we weren't right in the midst of the crazy. This year, Tyler was fantastic..sat in the same room with everyone else, never once needed to 'get away" or any of that. He even attempted to open a gift which he's never seemed interested in before. It was just so much fun to attend a gathering and feel like a normal family. Everyone had such a good time. Tyler has made leaps and bounds in terms of his threshold for stimulation and new environments, people, etc. compared to a year ago.

Which brings me to last night. I've said this many times in the blog but I can't begin to emphasize enough how heartbreaking it is to have a child who is nearly 4 years old that cannot tell you what's wrong. Last night around 9, Tyler started to cry. I went to his room and he was beside himself and very adamant that he wanted to get out of his room. I struggled with it because we have always made the boys stay in their room/bed when they awake during the night so that they don't feel they can just wake up and go play or do something else or fall asleep somewhere else. But with Ty this time I wasn't sure what was wrong and my being nearby was not consoling him so I thought maybe he was trying to tell me something and figured since he couldn't tell me he could show me. So I let him lead me downstairs, he was still crying and acting very much inconsolable. I had worried at dinner that maybe he ate too much so I thought maybe he had a belly ache.. I tried to rub his belly and that didn't work, we got him some juice wondering if he needed to poo but he woulnd't drink it. i had checked for vomit before i left his room and nothing and he didn't have a fever so I was ruling out any of those issues. Grr... he then walked me to the kitchen and went to grab his foam letters, my first indication that it may be a bad dream vs. not feeling well since he was somewhat interested in playing. I told him no, it was not play time, it's sleep time. So he was still crying in my arms and I told Steve how much it was breaking my heart. how would I know if something was terribly wrong where I should take him to the hospital. That's when I realized only time would be able to tell me. I couldn't physically see a problem, so if he cried non stop for a good 2 hours, I figure that'sa good enough indication that something is terribly wrong and that would be my indicator. So under the assumption he had a bad dream which is why he didn't want to go back upstairs, I knew I needed to find a way to slowly get him up there. He has a phone/toy he likes so we worked on the stairs.. Go up 2 stairs, play with phone, take phone away move it up 2 stairs, get Ty up 2 stairs, play with phone. We did this all the way up the stairs, about 10 - 15 mins I'd say to get to the top.. with a bit of whining/fussing but not all out crying. We got into his room, and had his light on etc. so he wouldn't be too scared. Then I had pulled out the 2nd crib mattress which we store under his bed in case we need to be there or in case he vomits on his, we have back up. SO I snuggled him on that one and sang to him and then for the first time he was totally calm. Ok time to transition him to his bed.. upset at first and then again withs inging consoling, better... So I laid down on the floor for a bit. after about 30 mins i had to pee so bad I couldn't stand it but he had kept checking to see if I was there so I knew he'd notice if I left. I gathered up the blankets to try to make it look like i was there and snuck out, whew.. Made it and finally got to pee. Got into bed...15 mins later Ty was crying again. I looked at Steve and said your turn, he said let's see what happens and good thing he did cause a few minutes later Ty was silent and then slept the rest of the night. When Ben wakes up in the middle of the night, he'll say, I had a bad sleep story, or I lost Sarah (the dino) or I need a drink or my belly hurts or whatever so it's very easy to remedy the problem and get everyone back to bed. With Tyler it's such a crapshoot and I always fear I may be downplaying what could be a big issue because I don't know what's wrong. I HATE feeling that way.

OK that's about all from us. Have a Merry Christmas Everyone

12/17/09

2009-12-17T17:52:00.003-05:00

So I came accross this picture of Tyler the other day. I remember exactly when this was taken, I had went to the store and Steve took this picture while I was away. The thing was.. this picture kinda warmed my heart when he showed it to me. No, I'm not warped, but this was my son for the first 3 months of his life. Steve captured exactly who Tyler was at this time in his life. This is how he looked when he wasn't sleeping most of the time. He had terrible eating issues and now we know that much of it was caused by his autism and the biomechanics involved with his eating. Different medications, switching to soy formula and eventually stopping breastfeeding all together cured the probem. Gosh..there were so many signs, if only I knew about biomedical treatments sooner. I worried about autism at 3 months but didn't learn about biomed until 18 months. Anyway, wanted to share this picture. This was my boy, in pain, but still beautiful and as his onesie says.. a little heartbreaker.

Another long period of time between posts, sorry about that. The website was blocked for a while by the firewall and then this has been a crazy week. My grandpa had major surgery, I got sick and was in the hospital and then last night, Tyler vomitted a few times was not well. Welcome to winter right! Not to mention we haven't had our normal visits by grandma lately because she's been really sick for the past month. Things just haven't quite been the same without her in our lives.

So let's see, I'm not sure I can remember everything I wanted to say. Tyler seems to be more consistently saying "ma ma" when he wants my attention, I'm lovin' hearing that! He also seems really super chatty lately. Just babbling up a storm, I love it when he goes through these phases, I always hope that we are gonna get a real word or two :)

We are venturing out more this holiday season than we have in the past and our beginning to plan on how to set things up for successful trips, etc. All the holiday letters/notices are going out on teh autism list servs about what to expect, not to expect. For example, opening gifts is so much for for most kids and so much fun for adults to watch them, however, Tyler isn't itnersted at all. it just puts him on sensory overload. He doesn't understand why toys are wrapped in paper, why he gets so many new toys at once and why there is so much commotion at once. So we rarely wrap his presents, if we do wrap them, we let Ben open them. I often try to think am i doing this for me or for Tyler. Tyler doesn't care if they are wrapped so I shouldn't either. i also want to make sure whereever we are when peopl eare opening presetns, that Tyler is set a bit back from all teh commotion and has a room to go if he needs an escape. So with everwhere we will travel this holiday season, I try to think of where that room will be, where we'll sit, how I can make sure to see and be a part of the events with Ben while also meeting the needs of Tyler. I also worry now that he's bigger and moer interested in eating about him getting a hold of food he's not supposed to have and when the event is not held at my house, what food is out and about is more out of my control which means I have to be more closely monitor Tyler and his whereabouts when snacks and meals are set out. However, if we think and plan for all of those things in advance, it tends to go a lot smoother!

The boys also have their first official teeth cleaning and exam next week. Definetly nervous about that one. Steve is gonna meet me at the dentist and wait with each one in teh waiting room while I'm with the other one int eh exam room. We've been working with Tyler on opening and closing his mouth when we ask him too. We also have to remember that Ben needs antibiotics in advance of the appt due to his VSD so there is lots of planning just to go to the dentist.

Other than that, our hearts just go out to our family members who are under the weather,our many friends who are either out of a job or soon to be with out a job, friends who are having trouble growing their family and any one else facing hardship this holiday season. I am in a much happier place this holiday season than last and am really appreaciate that I have two beautiful boys and a wonderful husband to celebrate the holidays with and that we get to share our joy with more family this year is just icing on the cake.

Happy Holidays!

12/4/09

2009-12-04T10:59:00.002-05:00

So Steve and I often tease each other that we really didn't need the there one to make our children.. Ben is just like me and Tyler is just like Steve. It's kinda been a joke since they were born. Anyway, Ben did the funniest thing the other night that would be something I would do and we could not stop laughing. It was Wed, family moving night, we were watching Ant Bully. Ty was in bed (non-napper) and Steve and Ben were on the pullout sofa sleeper (we pull it out for movie night so we can all snuggle) and I was in the kitchen cleaning up from dinner. I heard Ben say something to Steve... and anyone know that knows Steve knows he has trouble doing two things at the same time and since he was watching the movie he didn't quite respond to Ben quick enough and all the sudden Ben goes "WAKE UP".. if only I could give you audio of how he said it.. it was so funny.. and the lag time of Steve's response was really only like 3 seconds but that was too long for Ben to wait. I was laughing so hard.. I often tell Steve to hurry up and ask what takes him so long to respond when I ask him a question so it was hilarious that Ben called him out for the same thing. I said.. he's definitely my kid!

Ok on to Ty.... I mentioned a few posts ago I'd give some specifics about the goals that were set for him at his IEP. Here are some.

First we were asked to list in strengths and his weaknesses. In terms of weaknesses we obviously were most concerned with the fact that he is non-verbal at this point. Also we want to get his signs cleaned up as he tends to scroll, his fine motor skills are still delayed and he doesn't seem to have much interest in his beers. We also want him to work on 2 step instructions, i.e. go get your hat and your coat and work on daily living and self care, like putting shoes off and on and zipping coat, going potty, etc.

No on to specific goals... for daily living it was only have 0- 1 accidents though out the day and maintaining a dry diaper, washing hands independently and completing arrival routine with 1 or less prompts. Arrival routing is taking off coat, putting it in cubby, putting lunch in box, etc.

In terms of fine motor skills, Tyler demonstrates abilities of a 22 month old with one skill being a bit older. So there are goals to imitate vertical and horizontal lines, hold scissors and cut forward, etc.

In terms of speech one of the goals was to respond to his name being called without a physical prompt and to gain attention by physically tapping or verbalizing to the person. These two goals we had a bit of a disagreement about. I believe Tyler has both of these mastered he just may not always be motivated enough to follow through with the request. For example, I can be in the kitchen and Tyler can be 2 rooms away and I can say, it's time to eat and Tyler will come running to the table. I can be at the table and he can be playing and it's time to clean up dinner and i say Tyler come take care of your plate and he does. Tyler its time to go wash hands and he'll alk to the bathroom. There are many commands I place on Tyler where he does respond even if he's doing a preferred activity such as his piano or something. sometiems he voices his unhappiness with my request but he does respond. Same story with gaining attention. I think Tyler does an incredible job at getting our attention when he wants it, with both hand pulls, body position and vocalizations... I could give numerous examples but if he's not doing it in school and they gave an example of this then we agree it needs work so we kept this on as a goal. Other specific speech goals were in regards to Tyler producing 5 different vowel sounds (imitate them not just spontaneous) as well as one consonant sound "b"....we've been working hard at home on the "Mmmm" and the "BBBBB" "lllll"" sounds at home.

There was also some goals for his sign language to use signs to label items and also to demand items. There were goals about peer interactions and gross motor imitations.

In general we were very happy with the IEP proces and look forward to his accomplishments this school year. Maybe he'll even make it to a level 2 classroom next year. We'll keep plugging away.

We are hoping to get Ben enrolled in preschool next fall. We were considering whether ot do it this year since he seems advanced in some areas but also seems to need a bit more structure/rules in others but due to scheduling, finances, etc. we were able to make it happen. Funny thing.. he was at Ty's class one day, I can't remember why we ewere there but we sat in on the first part of class one day so ther eewas Ben and then about 6 other preschoolers who had Autism. It was circle time and Ben was the only one that was having a hard time staying seated in his chair! He's just not used to not being able to play with or go where he wants when he wants so we are going to try to work on some of that at home until we can get him into school.

Really looking forward to spend more time with family this holiday season. Love to all!!!

12/2/09

2009-12-02T12:06:00.002-05:00

Hope everyone had a great thanksgiving, ours was fantastic. Ty was a trooper! On Thursday we celebrated just the four of us which was really nice. On Friday, we hosted a Thanksgiving for Steve's dad's side of the family. As i had said before, it was the first family function we had hosted since the boys first birthday party. Tyler would just get overwhelmed with more than a few peope in the house and we'd spend our time helping him get through it and not being able to be hosts so it wasn't worth it. His tolerance has increased and his frustration levels have decreased so we decided to try and see how it goes. I had Steve drop run an errand with the boys a little before we expected everyone so I could do a final clean up around the house. This was probably a mistake in judgement on my part since Steve returned home at about the same time the guests were arriving. Also, Steve was blocked out of the driveway so the boys had to enter through the front door instead of the garage door. Tyler is used to entering through he garage door, so this alone can cause him to be confused and get upset. In fact, if we ever miss a turn or something and have to turn around or forget something at daycare and have to go back, he gets really upset, not understanding why we are doing things differently. So many notes to self in this blog (practice going through front door, go different routes, etc.).. see there's so much to remember in the life of autism and how to "fix" behavioral issues. OK anyway, back to our thanksgiving celebration...

Tyler had to enter through the front door and he was whimpering a little when he walked in. I took his coat off and his shoes and got him settled and went about greeting people, etc. I was in the kitchen soon after doing something and he came in and was on the verge of tears and you could tell he was just looking for me to help him make sense of all of it and was getting more and more worked up not finding me since we had a house full of people. I took him upstairs to get him out of hte commotion and get him settled. While we were preparing dinner, grandpa went upstairs to hang out with Tyler and make sure he was ok. Shortly before dinner, Tyler came back downstairs and was fine, in fact he was fine from that point forward. He did phenomenal. We had my sister in law and her husband and my nieces stay the night and he did great with all that. They were all there in the morning and he did great with all that. He used to not even be able to eat with anyone new near him let alone a big group of people. He'd bang his head when it got too overwhelmed and if all else failed, he'd retreat into his own little world, block out the rest of us and never even look our way or respond to noise, etc. He was so interactive and happy and engaged, it was just awesome. And of course Ben was on cloud 9 with all the people to give him attention and play with him. We really need to adopt an older child to play with Ben:) Hopefully one day though. In fact ont he way to school/daycare Ben and I were pretend sneezing, a little game we play. Tyler was smiling at us so I said, ok it's Tyler's turn. He opened his mouth repeatedly but nothing came up. Ben goes, he can't talk! I said he's trying to talk and one day he will be able to, won't that be cool. Ben goes, yep, and then he can see "hey ben, let's play GI Joe's".. lololol..oh how I hope that happens! ANyway there was one other time Ben yelled at my cause Tyler didn't talk. Oh they were in the bathtub and tyler wanted me to throw his foam letters into the tub and I was asking him the color of oen of the letters. Ben, in a very annoyed voice, says, "HE CAN"T TALK!".. I said yes he can, he can talk with his hands and he knows how to sign "green".

The rest of the weekend was just as spectacular, wish I wouldn't have waited so long to write in the blog because I know I'm forgetting some things. We took the boys to Urban Toddler (play location nearby) and they have a bunch of play areas/rooms set up. We were playing in the kitchen. Ben was playing with the babies and so I was too, Tyler wanted to spin the dishes of course, his fav stim. So I started getting Tyler to play with us in imaginary play. I was surprised as to how quickly he was into playing with us. I asked him to give the baby a bottle and he did. I pretend drank from a Little tea cup and so did he, I feed the baby with a spoon and asked him too and he did. See he used to do this but only with a very highly reinforcing reward for doing so and also through gritted teeth and tension, hew as very relaxed and happy to do it this time. It was just one of those moments when I realized how far we've come since the beginning of that study about 2 years ago.

Tyler had to miss two music sessions due to illness so we are getting to do a one on one session with one of the music therapists next week, looking forward to that. So we can talk to her about Ty's interests in the keyboard and how we can embrace this and keep him engaged with us through music.

11/25/09

2009-11-25T07:44:00.003-05:00

Attached is a link to audio/article about autism in Michigan. It talks about how michigan is one of the worst states for insurance coverage for services, how annual treatments can be upwards of $50,000 a year, etc. but it also mentiosn the Autism Collaborative Center, Tyler's school, and Dr. Catherine Lord who oversees the the University of Michigan Autism and Communication Center which is the source for both of the studies Tyler participated in.

http://www.publicbroadcasting.net/michigan/news.newsmain/article/0/0/1580195/news/Autism's.Growing.Reach.

On a family front, we all have been going back and forth with colds, coughs, runny noses, etc. since Tyler's second day of school. Even so, we had a monumental moment in our house the other night. All of us had the same dinner. Crazy to most of you, I'm sure, to think that this could be monumental, however, we usually cook 3 separate meals. Tyler is rescricted since he can't have gluten, casein or egg, and Ben is picky and then there is Steve and I. We realize that we have definetly done wrong by Ben and his eating habits but accept that it was out of necessity. It was not until recently that Tyler actually started touching his own food or even being intersted in feeding himself. As some of you may remember, we used to have a hell of a time getting that kid to eat anything so all of our efforts have been focused on just getting Tyler to eat so Ben would pretty much get whatever we knew he'd eat on his plate...therefore his willingness to try new foods was significantly squashed... sorry little buddy. However, the other night...we all ate steak, veggies (ok we did have different veggies) and potatoes. I knew Ty would eat the steak if I could just get it in his mouth without him seeing it since it was something new but Ben is not a big meat eater, he's a carb junkie so getting meat into him is tough. But he ate all of his steak and so did Ty. steve adn I just kept looking at eachother like is this really happening? are we really having a normal family meal. Ty is feeding himself, ben is eating meat and Steve and I are able to carry on a conversation. It's been 3.5 years in the making! We are super super thankful for that!

So it seems we have lots to be thankful for this year.... eating the same meals, going out in public with just one parent, going out to eat with just one parent, the boys starting to play together, being able to get together with family more often. Things are definetly easier and for that I'm very very thankful!

So on that note I want to wish everyone a happy thanksgiving. Thanks for being a part of our lives. Thanks for supporting our journey and most of all thanks for understanding our crazy lives and still standing by our sides.

11/20/09 -

2009-11-20T08:34:00.002-05:00

There was an interesting article going around the list serv today. See below..

http://www.thecenternj.com/

While the scientific community will have to validate The Center's findings, the model for assessing homeostatic relationships indicates the"trigger" behind autism is an imbalance between apair of amino acid neurotransmitters; glutamate and glycine.

According to The Center's founder, WilliamMcFaul, a retired business person and not amember of the scientific community, "Because ofits universal applicability, our Life Sciencesgroup has already used the model as a tool toidentify highly probable causal paths for several illnesses and disease entities.

Autism was one of most difficult illnesses The Center had attempted to analyze. If it hadn't been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine.
It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body. It is that wide-spread disruption that apparently results in the systemic problems that encompass the mind and the body characterized in today's 'classic'autism."

He also added, "The use of our model indicates each of the disorders within Autism Spectrum Disorder (ASD) is attributable to different disruptions in homeostasis. We look forward to sharing our findings relative to each disorder with the scientific community."

Wouldn't it be amazing if they actually discovered the cause of autism!

Ok on to other news. Tyler's IEP meeting went fine and we finalized his goals for the next year. I'll share more details on that later, I'm still going over everything. We had Tyler's private speech therapist come into the meeting as well. Our biggest concern about Tyler is obviously that he's not talking and if he were able to talk, his few behavioral issues would likely diminish. So we wanted to make sure that everyone was on the same page in terms of his speech goals.

We had rescheduled speech from Monday to yesterday since Ty was quite full of mucus on monday and not feeling 100%. So moving the day allowed Steve a chance to sit in on speech this week and he really enjoyed it. He said he's amazed at how many sounds she is able to get out of him and how responsive he is to her and how well he knows his roles, etc. and is engaged in an activity. She's really great with him.

Everyone has been under the weather at or house this week so there isn't much sleeping going on, but lots and lots of coughing. It seems that it's all finally subsiding and we are getting better, yeah! Looking forward to a full night of rest.

Tyler is still really intersted in playing gross motor/wrestling type play with Ben. His eye contact and engagement is fantastic.. sometiems Tyler is engaged longer than Ben. They love to jump on Tyler's bed together, both get the giggles and it's such a pleasure to watch.

That's about all for this week. Hope everyone enjoys their weekend.

2009-11-16T10:16:00.003-05:00

Here's another masterpiece by Ty. Yeah, I know it's not Mozart or Beethoven but I'm amazed at how delicate he is with the keyboard and how calculated his movements are and how well his fine motor skills are in getting his hands and fingers to work together to get the sounds he wants. It's fun to watch him search for and find just the right key.

It is obvious to me that Tyler has a musical gift and we want to embrace it and maybe if he didn't have autism, then maybe, he wouldn't have this gift, who knows. I also know that autism has made our family healthier in terms of what we put into our bodies being food and supplements, etc. But even with those things, today, I despise autism. I would like to put on some boxing gloves and get into the ring with autism and beat the shit out of it until it no longer have a hold of my son or anyone else for that matter. I hate the decisions that I have to make because of autism, I hate the financial strain that autism has put in our lives, I hate the relationship strains it's put on our family. Not only our interaction with Tyler and each other but our interactions with our family and friends and work and every other relationship we have.. it's all influenced in some way by autism. Most of all, I hate autism for not letting go of my son. LET HIM GO! Let him live a normal life ... he deserves to talk, he's worked so hard. He deserves to play with his brother like normal siblings and he deserves family vacations and to have friends..and Ben deserves it too. I've been feeling quite guilty about Ben lately and the amount of time, energy, and funding we put into Tyler and then Ben is just kinda left on the back burner, not that he's suffering by any means but if only autism wasn't in the picture. My goodness, the boys would be having a ball together right now in preschool, making friends, going to birthday parties, going on family trips, visiting other family members, the sky is the limit. So get out of my life autism, get out... you are not welcome!!! You can't keep my boy forever.. I will get him back.

11/12/09

2009-11-12T14:48:00.002-05:00

Let's start with Monday. Monday's are always hectic. I start work at 6 a.m. so that I can end work by the time Tyler is done with school. On Sunday, I had packed diapers and wipes in his school back pack so that I'd have them in the afternoon. I had packed a snack and juice in my car for him knowing he'd be hungry in between appts. So I pick up Ty from school at 1:45 and we race off to speech at 2:00 on the opposite side of town. Speech ends right around 3, we pay the bill and pack up. I get Tyler in the car, get him some juice and pretzels. We now have 15 minutes to make it even further on the other side of town to music therapy. he's snacking, I'm driving... thinking how I need to change his diaper when I get there and I'll just quickly do it in the car, we are a block from the school and it's 3:14 (1 min before music therapy starts). I open the side of Tyler's backpack as we are driving up to the center and the diapers and wipes are gone! Oh no...Tyler hadn't had a diaper change since school and music therapy was another 45 minutes and then another hour by the time we got Ben and went to the bank and got home. eeekkkk.. Steve dropped TY at school so I realized he must have taken the diapers out of hte bag.. grrr.... I call Steve to politely (or not so much) tell him that I was gonna kick his ass for taking the diapers out cause I didn't know what I was gonna do now and it was the first music therapy session and I didn't want to miss it! So i calmed myself, searched the van and found one lonely diaper, yahoo.. quickly changed him and got him inside. P aid the bill there (expensive day) and then went back to my car to call Steve and apologize for yelling at him. He thought they were left over diapers from me taking the boys to the park so he took them out. we are just on such a tight time table sometimes there isn't a lot of room for error.. snow is really gonna mess us up :)

So Monday night was a bit tricky as well. Steve goes to support group on Mondays and although they do have a babysitter there, Tyler doesn't nap since we are on the go so much and he is tired by 6:30, the group goes until 8 so he'd never make it and we really couldn't' afford a sitter this week so I stayed with the kids. Ok, long story short, it was a short night of sleep. Ben's been waking up a lot lately with misc. issues. he actually struggled to go to sleep that night for some reason. Then Tyler started coughing around midnight and that lasted a good 30 minutes. Then around 3:00 I hear Tyler screaming. I run into his room and he's standing just inside his door (he can't get out cause we have a child lock ont he inside of his door). I try to calm him and it wasn't working, he didn't' feel feverish or act like he had a hurt body part anywhere so I lay him down in his bed and grab one of his blankets and lay on the floor next to him. He seemed to be somewhat satisfied with this and laid down.. he kept leaning over and checking on me every 5 mins. Was scared to fall asleep cause I didn't want to miss the alarm and I was a bit worried if Ben woke up upset I wouldn't know it cause I can't hear him from Tyler's room. So I laid there next to Ty, a few times slowly trying to crawl my way but getting caught and then freezing in my position.. so funny if i were on video. I know many parents who talk about crawling out of their kids rooms. ha. Anyway, I was finally able to leave around 4:00 and found myself to then be starving for some reason so I struggled to fall back asleep. My alarm went off at 5:30, I hit snooze until 5:45 when I heard ben yelling that he was ready go get up. Yawn yawn.. where's the coffee.. it would seemt hat the earlier the kids get up the further ahead I'd be but somehow I felt like I was playing catchup all morning. So dropped Ben off at daycare, then Ty at school at 8:35 and then off to work. i was so so tired. Mondays wear me out so If I don't catch up on sleep on Monday nights I'm in trouble. Tuesday I was dragging! Someone at work asked why I was so tired so I explained I had a busy Monday and the boys were up a lot and Tyler was really upset in the middle of the night. She asked what was wrong with him and I said, "i don't know"... cause he can't talk. he cant tell me. If I'm around him when he gets upset, usually I can easily figure it out, he got hurt, or is upset at a toy or something but I have no idea why he was so upset. Damn autism.. makes those things tricky. Same thing situation int he morning. He wouldn't come downstairs and I had no idea why he didn't want to come downstairs. I tried all of the tricks but inevitably I needed him to come downstairs so I could get him dressed and give him breakfast and his supplements so I finally did what I probably should not have and picked him up and brought him downstairs. In the grand scheme of things, when he's 10 I'm not gonna be able to do that so I try to be patient and make it happen on his own will even if he's not happy about it but I just didn't have the time to do it the right way. Would have been awesome if he could have told me why he didn't want to come downstairs. I seriously dream at least twice a week that he can talk and it's so amazing.

OK on to other things. Was looking at a picture book last night with Ty. It's one we got Steve for fathers day with a bunch of family pictures. Anyway, we got to one page and I pointed out who was who and he pointed at the picture and threw my hand up at the wall. There is one big black and white picture of Tyler and one big black and white picture of Ben when they were babies in our room and Tyler was telling me that the picture in the book was the same as the one on the wall.. Yep, sure was! Then we got to one picture and I said that's Tyler and I touched him and said that's you. So then there was one of me and I said and that's mommy and he touched my face. he really comprehends so much.. he's so are of things that people don't even realize.

ben is still really excited to get Tyler talking and he even initiates it and starts babbling to see if we can get Tyler babblign too. it's so cute and I hope he's interest in interacting with Tyler continues.

We are hosting a Thansgiving at our house this year which will be the first event we've held at our house with Ty there since their first birthday party. WE are really looking forward to it and hope all goes well so we can continue to expand our horizons and do a little bit more family stuff. We know everyone misses us and we miss them and definetly want to be able to be involved in more things as a whole family rather than separating which is how we've managed the last couple of years.

11/9/09

2009-11-09T07:11:00.002-05:00

Busy week this week! First off, the intake at the Autism Collaborative Center went great, staff were very friendly and we felt very welcomed. It also was so good as always to talk abotu Tyler and his history and how far he's come, I love thinking back to where we once were. So we actually start music therapy, today, yeah! On Mondays Tyler will be in school from 8:45 - 1:45, in speech therapy from 2:00 - 3:00 and then off to music therapy (mom may have to speed!) from 3:15 - 4:00 then back today care to get ben and home for dinner before Tyler passes out from exhaustion! So we are hoping to eventualy fill most of his afternoons with more "therapy" type stuff so that we can enjoy family tme on the weekends and not feel so much pressure to ensure Tyler is doing "therapy" type stuff. Anywaay, so music therapy today, tomorrow we have another appt for Tyler to plan more after school activites and Wednesday we have an IEP (individualized education plan) meeting at school for Tyler; these occur annually. I actually reviwed his current IEP in preparation for the intake appt at teh collaborative center and since it was a year ago, it was fun to see how far he's just came in that year, yeah Tyler. Anyway, busy week moving forward for him. Once we get this week squared away, we are gonna get Tyler back into the DAN doctor.

In terms of the weekend, the boys are doing great. Actually had a wonderful moment of independence. For the first time ever, I took the boys to the park with just me to supervise, then we went out to eat (first time alone)and then to the store. It was great and the boys were great. slowly but surely I feel like things are getting easier and more independent where it's not so hard to get out of our house and leave the safety zone.

potty training is going so/so. Tyler is still going once or twice day on the potty but Ben has turned back into not wanting to go. IN fact, Ben has been very defiant lately on about every issue and we are trying to get him a lot of postiive attention but it's tough because he's constantly doing something that unfortunately gets him negative attention. I do believe he's becoming more keenly aware of Tyler's condition and perhaps is a bit jhealous of that situation as well as normal 3 year old stuff and I think he may be getting bored at daycare. SO we are gonna try to address all those things and make sure he's getting one on one time with parents and doing some things for just Ben. most sib shops (support groups for siblings of kids iwth autism) don't start until age 5 so we have a bit to go before we can do that.

Ok that's about all for now.

11/3/09

2009-11-03T10:52:00.002-05:00

wow.. it's November! Unbelievable how fast time flies by! Tyler did really well on Halloween. it was much colder this year than last so he didnt' last as long doing the actual trick or treating but we brought the wagon and his books so he was out with us for about 45 minutes and then Ben wanted to go home. It was awesome to all be otu together. We just left candy for the trick or treaters on our porch adn off we went as the Wizard of Oz! Tyler was not at all fond of his "mane" for the cowardly lion which is why he's crying in the pic i had just pulled it off his head, he's not so fond of hats on himself or other people. This was the best halloween we've had as a family so we were very very thankful.

Saturday morning, the coolest thing happend. The boys were playing together, it was awesome.. I even woke up Steve to she could see it. They were wrestling together on ben's bed. both had the giggles. We want to continue to encourage this interaction so with the exception of a headlock and a head bang against the wall last night, they both seem to really enjoy wrestling.Trying to show Ben how to be a bit more gentle as he tends to be the aggressor...we don't want Tyler to think of playing with ben has hurting. But it was awesome to see it and all the giggles.. a piece of normalcy :) Oh and I'm pretty sure Tyler said "ball" on Saturday which was also got me pretty excited.

Sunday marked a milestone for us.. both boys, played outside, independent of us, in a functional way. Those things have never happend before....it was unbelieavable.. Dad, Grandma and I all just watched in amazement..almost like a sheww.... we made it :) Ben was climbing the tree adn playing in his jeep, Tyler was playing on the slide and with the frisbees and climbing the sandbox. The indepeendence they've gained this summer is really great.

Both boys still doing really great on the potty..Ben is keeping a dry diaper all day at daycare. Tyler is sitting on the potty now for up to 2 minutes at a time and doing very well and goes potty sometimes even. He loves to watch the water go down the toilet after flushing.

That's about it for now.. I have an appt tomorrow to get Tyler enrolled in the collaborative center to get him ready for music therapy and hopefully more services in the future.

10/29/09

2009-10-29T10:12:00.002-04:00

Here is Tyler's latest masterpiece. I actually had a hard time making dinner last night because I kept wanting to go watch/listen to Tyler play. Ben was upstairs playing GI Joe's.. he's really starting to like GI Joe's and Star Wars. on Saturday, Steve and Ben went to Steve's friends to play with his kids and they all played Wii. Ben had a ball.

Compared to a year ago, Tyler is just so much more chatty and so much more aware. I guess if i could say the percentage of the dya that we have Tyler in our world and not lost in his own world is about 95% now. I feel like he's with us most of the time and wants to engage with us most of hte time. It's become a ritual that whenever I'm cooking, Tyler brings me his foam letters and we play that game. It takes a bit longer to get dinner together, but it's so much fun to play with him and get him to make different sounds, etc. I captured this video this morning on the way to school. he's just chatting away to me and what's so fun is how happy it makes him to interact.

Ok that's all for today, busy week but wanted to get the video's out there.

10/27/09

2009-10-27T09:50:00.005-04:00

Speech went great yesterday for Ty! I was so proud of him. Here are some videos:

He was super talkative right away and he really working hard to do what she wants him to do. He's beginning to make his lips form in a certain shape on his own when she asks, like if she makes the "ba" sound, you can see him really watching her lips and then trying to imitate her. Speech also commented on how Tyler always holds her to her word. She'll say he has to do somethign 3 times, and then when he gets to the last time she'll say one more tmie and then sometimes tries to get more.. Tyler doesn't let her get away with that, he's like seriously? You said one more time! Sometimes he even looks at me like Help mom.. I'm supposed to be done!

Tyler has a bunch of large foam letters and he really likes to bring them to you and then you say the sound and then throw it and he goes and gets it and brings it back to you. We make him say the sound once or twice before we throw it so he has to work for each one. Anyway, he sort of invented his own augmentive communication device. He has a leap frog letter drawing pad and when he picks out a foam letter, he'll push that letter on his drawing pad where it will tell him the letter and how to draw it. Then he brings it to us.

Both boys are doing very well with potty training, other than when sleeping, Ben has had a dry diaper since Saturday afternoon. Tyler has went potty a few times on the potty (we are following the schools program) and does a great job of sitting on the potty for 30 second at a time without having to be held in place. He loves to flush:)

Really busy this week so not a lot of time for updates but just wanted to get those videos out there.. I have more to share, maybe more later this week when I have a bit more time.

10/22/09

2009-10-22T10:02:00.003-04:00

Tyler and I had a little conversation today, it was so much fun. We were on the way to school and he was int eh back making "ahya" sounds so I looked in the rear view mirror and started repeating back the sounds he said, then I'd stop and he'd start saying them again, then he'd stop and I'd start. He thought this was so fun, he was smiling the whole time. I thought I'd give it at try with a new sound and see if he'd make that sound that I made too. So I started with "ba ba ba ba ba ba" and then he went "baa baaa baaa baaa".. it was so cool! We continued talking for a good 5 mins.I wanted to take advantage of his relaxed state and keep him taklign ot me. Carol (speecH) says that when he tries to talk, it's really really hard for him, that's why he grits his teeth alot, he's trying to force it out. when it comes naturally and he doesn't have to think about it, it's much easier for him so it was great to talk to him. Which reminds me, he did something really cool at speech on Monday too. I wasn't able to video it unfortunately but he wanted to spin cups, she had a stack of htem, so in order to get the cups, he'd have to make sounds. He got to the point where he was just running up to her and going "ah, ah" he had to do it twice for each cup, he didnt' need any prompting he was just doing what he needed to do, TALK, to get what he wanted. I love him. Ok here is the video of TYler and the piano. i kinda caught these after he'd been playing for a while so his interest is kinda of lacking towards the end but you can see how interested he is in each keys and their sounds. In fact he was pointing to the key as if to ask me to label it so I started telling him the notes for each key. Anyway, here are those videos.
Oh, that reminds me, we've begun somethign new at home. Tyler often points to objects in books for you to tell him what they are, and he often points to objects in real life for you to tell him the color (how I know this is what he's lookin gfor is that once I tell him teh color, he's satisfied with my answer, if he's not satisfied, he'll keep touching the object until you tell him what he's looking for) but he rarely if ever points to objects in real life for yuo to tell him what the name of the object is (unless in book). So we've begun making a bigger effort to name all kinds of things for him. Yesterday we did this in the kitchen whiel I was making dinner, we talked about the lights, refridgerator, dishwasher, coffee pot, sink, faucet, table, and chair. He really liked this new game. He's like sponge.. I am so intrigued by him and his mind sometimes. I just find him to be a fascinating little person.

10/21/09

2009-10-21T08:13:00.002-04:00

So I just had one of those moments where someone who doesn't really know much about us other than the fact taht Tyler has autism was asking me a bunch of questions. I was answering all the questions and finally he goes "wow, you guys are really doing a lot"... I'm like yeah, I guess we are :) It felt great, it was just this past Monday where frankly I was feeling pretty shitty about everything.. literally everything. Kinda felt like I wasn't making anyone happy so I was just gonna ship off into no mans land and live on a beach and catch fish for the rest of my life, ha.. ok I wouldn't really do it, however, the thought brought me a bit of peace:)So let's see.. the final straw on my shitty day Monday was when we were leaving speech. Tyler worked really hard and he gose to speech right from school so it's 3 p.m. by the time we leave and he's tired. I picked him up and speech had told Tyler to say goodbye. I told her he waved his hand and then she goes, let's use your lips and grabbed his lips to get him to make the "ba" shape. I made a joke to Tyler about her being relentless and she commented back, If Mommy were a little more relentless, we'd move a lot quicker"... I had swallow hard to hold back tears. I know she's right, I cuold do more, and I have the knowledge to do more for Tyler, I just don't have the time, Sometimes I don't even have time to pay bills, have needed to do that since Friday. My cell is broken and not charging properly for over a week and a half and I haven't had time to take it in so I'm constantly shutting it off and taking out the battery so I can be sure to have power when i the car with the boys. I also was just talking to Steve this weekend about possibly getting a second job at like whole foods or something to not only get discounted food prices for Ty but to also make some extra cash. Anyway, I just struggle with finding the right balance sometimes, Steve wants a wife, Ben wants a mommy, Tyler needs a mommy and a therapist, we are implementing 2 new software programs into the fire department and friends need me, family wants to talk and hear from me, sometimes I wish there were 48 hours in a day... then maybe I could make everyone happy, including myself. none the less.. that was my problem on Monday.

However, although I can't necessarily explain all the details just yet, we had some very positive movement yesterday afteroon which totally turned my mood around. More details to come soon but hopefully we have some solutions for our crazy schedule, etc. soon.

Also, news on the potty training front. School has begun charting Tyler's wet/dry diapers at school and follows their potty training program which we are also implementing at home. he actually has went potty once at school. Steve shared the plan with daycare yesterday and when Steve got there, Ty went potty on the potty and got really excited about it. Which as I had expected, got Ben jealous about the attention Tyler was getting and then he wanted to go on the potty the rest of the day too. There may be hope for us yet :)

A few weeks ago, my aunt took the boys for the weekend so we could do some home improvements, including re-doing the boys rooms. They are so cute now. Both boys are now in big boy beds which made me incredibly nervous about Ty but he's doing great. We put a child lock handle on the inside of the door so he can't get out on his own, fears of him roaming the streets in the middle of the night! Anyway, Tyler has a transportation themed room, we found them a train table on craigs list and have some homas trains in there and then planes, trucks, trains, etc. decorating the room. Of course Ben's room has a dinosaur theme. He actually has a new twin bed, we gave Tyler, Ben's toddler bed. Ben really wanted a volcano in his room so we got him a lava lamp. We were able to find sheets that matched the purple walls so we didn't have to repaint and we made some other accents in there to ty in the purple in a non girly way. We are still waiting for his dinosaur wallies to come in to make a bit better. We also re-did their bathroom upstairs, made it more kid like. SOOOOO CUTE. THey are loving their new rooms.

Oh I digress.... the point was that my aunt has a piano and I got an email that Saturday a.m. asking how long she should let Tyler play the piano cause he just loves it and didn't want to stop playing. I said, let him play as long as he wants. I know he loves music and his little baby piano and we had already planned on getting him a bigger piano for christmas and getting him into music therapy at autism collaborative center. Anyway, so excited because one of the assistant chief's daughters had an old electronic keyboard/piano with a stand that she wasn't using anymore so she happily volunteered to give it to us :) We are gonna give it to Tyler tonight, I cannot wait for him to see it. hopefully he naps today so he can play for a long time. Plus it's family movie night and he won't be intersted in that so it's perfect activity for him, yeah! which brings me to my next point... there was a story on NPR recently about a man who was diagnosed with aspergers at age 45. http://www.npr.org/templates/story/story.php?storyId=113744905&sc=emaf He's a musician and a professor, his son also has aspergers which is actually how dad got diagnosed. Anyway, at the beginning of the clip (audio) they talk about a piece of music and actually play the music (can't remember musician's name) and it sounds very similar to teh music structure that Tyler plays on his little baby piano. Listen to the clip should be in first 3 mins or so and then go back int he blog and listen to the clip of Tyler playing his little baby piano.. very similar. I'm so excited to possibly have a bridge from Tyler's world into ours via music. Also very excvited that we caught Tyler's autism so early and get him involved in all tyopes of therapy including socialization so that maybe he doesn't have to face so many challenges in life. Just love that little guy to bits and pieces.

Oh and tyler now gives kisses upon demand.. soooo cute, he's become a really great hugger too. And the cutest thing.. when I put Ben to bed last night I gave him a kiss and a hug and I said thanks for the lovin'.. he goes tomorrow when I wake up, I'm gonna give you some giant lovin'.... so cute.

Ok, we are all set to be the wizard of oz group for halloween. Ben is scarecrow, Tyler is cowardly lion, steve is Tinman, grandma is wicked witch and I'm dorothy. Ben is really excited. Ty's not so fond of his costume so we are strategizing abuot ways to get him comfy in it. We are gonnna put it on an doff a few times, it's scratchy so we are gonna put some long sleeve under shirts and pants underneath and hope that helps.

I'm sure I'm forgetting many things since it's been so long but for now at least you have an update :)

10/9/09 1 out of 91

2009-10-09T07:00:00.003-04:00

wow.. I cannot believe how fast time is going by, I'm just not finding time right now to update the blog which means I sometimes forget so many good things to tell you. First things first..we've begun potty training Tyler based no the method the school uses which first means potty charting. Tyler actually did go potty on the toilet at school the week before last, yeah! They following the method of an expert at U of M who is also doing a seminar at teh school later this month so Steve is gonna go to that so we can get up to speed on everything we need to do to get Ty potty trained and hopefully it will work for Ben too. They'll be 4 years old in 6 months! Tyler did very well at speech this week, I'm always amazed at how much he's willing to tolerate there. We got him to say "up" a few times. Kinda hard to explain and since I was involved I coulnd't video it but basically he lays down, head in my lap and then she pushes on his chest, he starts to make noise, I make sure to keep it in his throat (not his nose) so when air starts coming out his nose, I plug it and it goes back into his mouth. The only sounds we make through our nasal airways are "mmmmm" and "nnnnn" so we want to encurage the air/sound to come out. He also has a habit of making sounds iwth the make of his throat and we are showing him how to move those sounds to the front of his mouth. So ok, she pushes on his chest, sounsd come from the back of his mouth, once he is used to doing this, then we start moving his chin up and down and he'll start making new sounds. I did have one video of her workign with him on the couch, basically you just get to see him pick his nose.. ha! Both boys have had colds off and on since Ty started school and we pinch his nose closed a lot during speech and it tickles him.

http://www.medicalhomeinfo.org/health/Autism%20downloads/AutismOct5parenthandout.pdf This link will take you to an article about autism from the american academy of pediatrics which indicates that in the US, the statistic is now 1 out of every 91 children have autism. Used to be 1 out of 150. So so so so scary.. It is so damn frustrating that it is that prevalent and the statics as seen in this article are that 3 - 25% of children can improve so signifcantly with treatment that they no longer fit the diagnosis and yet insurance does not cover hardly anything. We just received our official "denial" that in our insurance will not pay for Tyler's speech therapy which costs us $320 a month for essentially 4 hours a month (1 per week). It just is so frustrating. If I had my way, Ty would be in school until early afternoon, then have 2 hours of speech, then work with a behavior analyst for the rest of his day, eating, etc. until bedtime. Yeah, a lot of work but the thing is.. Tyler wants to work, he wants to learn, he's so super smart. He brings me his flashcards all the time which he could easily look at himself, he knows how to open them but he wants me to work with him, I make him make sounds to get each card and we work on different sounds. We've been focusing more on sounds lately than signs.

Anyway, we are going to add music therapy soon, the autism collarboration center at EMU will he having a music program added soon, in fact I think Amy said they are shooting for monday afternoons so we hope to rush him off to music therapy after speech. http://www.annarbor.com/news/like-many-parents-kelly-van/ One of the littel girls in the picture/article (gillian) goes to Tyler's school and also was in splash camp with him this summer. It's amazing how large yet small the autism community is once you get into it. Everyone tries to help everyone else, it's truly amazing how many people have helped us get to where we are.

9/22/09

2009-09-23T08:45:00.003-04:00

Jeez time flies.. it's been a bit since my last update. Sorry about that. Ok so we've had 2 more speech session since my last update. THe videos here are the week before last. He was very vocal with her and very tolerant of her techniques. I came out of the session just being so hopeful. She said he has all of the components of speech accept for actual words. So int he video you'll see her working with blow toys. I ended up helping with this. We'd hold his mouth tight around the blow toy and then plug his nose so eh had to breathe eventually and then hoping the sound or movement of hte blow toy will make him want to keep doing it. I amazed at how tolerant he was to us doing all this. She also worked with him on books and she really does a good job of keeping him focused on making sounds on each page before going on. And then the final one is her getting sounds out of him by pounding on his chest. We've been practicing this with him at home too.
This weeks speech session didnt' go as well as the previous 2 sessions. Tyler was tired going into it and has been a little under the weather so he wasn't as tolerant as normal and therefore wasn't as willing ot make sounds. This was the first time that he did more than grit his teeth at her. He smacked at her face and went to pinch her a few times when he got frustrated with her. no worries though, she's a sesoned professional. I will say it's hard to see him get that frustrated, he never cried though, just whined abit. And I know it's for his own good. Like she said.. imagine someone asking you to sit down adn play the piano when you don't know how, it's very frustrating and that's how Ty feels when we ask him to talk. Anyway,
At one point he just started to refuse to make any sounds. I asked her if she thought he was doing this to be stubborn or if he wasn't able to make sounds at that point, she goes a little of both. Its an automatic response when he's happy or upset to make a sound but when he's stable it's harder for him to make the sounds. Anyway, she is everything I could have ever wanted in a speech therapist and hope hope hope that insurance approves our claim so we can get this covered for Ty. Her focus is getting sounds out of Ty and getting him talking and getting him to use his mouth and making different shapes with his mouth an dgetting to nkow his tongue and the sounds that come from his chest and out his mouth vs his nose. She really just focuses on verbal skills and it's fantastic.
As for other updates, Tyler continues to have loose stools which has happend every since we started the TMG.. there was actually a really good article i saw yesterday about TMG and it's role in mylenatino, etc. Since it's not really creating any rash or other issues with his booty, we are gonna keep him on it as I feel the long term benefits outweight the diaareah. The doc said it should ahve wore off in the first month so we'll mention to him next time that it hasn't yet. Ty is doing great at school, is really really happy every day to be going to school so that' swonderful news. he's working with different parapro's this year which I also think is good and they tell us just how smart he is. Oh and Ty is doign really really great in public. ON saturday night we took the kids and Steve's mom out to dinner. We had gotten Tyler a new Tag book for the occasion. He literally played with it 75% of the time we were there, we went to a place that had an outdoor patio and play structure. He did play on that for a bit as well and all by himself :) Ben however wasn't so happy taht night we discovered later that he had a fever and just wasn't feeling that well. But Tyler was fantastic. After dinner everyone wanted to go look at costumes. Ben really wants to be a scarecrow so we decided we could all go out as the Wizard of Oz group for Halloweeen. I wasn't exactly sure how to handle Tyler in the halloween store. i've never literally never, taken Tyler into a store like that just to look around. it's rare that he goes into a store and if so we have a purpose and since he's been refusing to sit in a cart, even that is rare. So I had to put on my thinking cap.. I was afraid he was bored with his book since he'd been so good at the restaurant reading it for nearly 2 hours. So anyway I grabbed a ball I had packed, not sure whY I had packed it, but I did and thank goodness, it was perfect. So we went into the store, as with most public outings I feel my role is to keep Tyler regulated and support him through it. He was a bit leery going in since we had just put him in the car seat and then a minute later taken him out, he gets confused about what's next and doesn't understand the concept of halloween yet. So I picked him up and talked to him on the way ine. WE get inside and he looks at the skeletons a bit and then settles on some platters/plates. He gets out the colored plates and we practice signing the colors and spinning th eplates on teh floor. Soon after a sales lady comes over and asks if we needed help and if everything was ok. I said yep, we are great, he wont' break anything and if he does I'll pay for it. He has autism and doesn't undersatnd teh concept of halloween but the rest of the family was shopping and he's happy playing with plates so that's what we were doing. She goes, oh no problem. Then hew as bored with that and everyone was still looking around so Iw as searching for my next activity and then remembered I had the ball. So they have a very logn hallway there so i started rolling the ball down the hallway and Tyler would come get it and bring it back, kinda like fetch. He was so happy. Anyway here's a video of Ty playing ball with me at the halloween store. look closely and you'll see a different employee come up to me, she had a talk with me on how cameras were not allowed. Man, Ty and I were getting into a lot of trouble, ha!

Ok so now i want to share with you an article I got a hold of this morning.. I just LOVE these stories. I know everyone at one point or another has thought I was a bit crazy or over the top or a little too "into" helping Ty or whatever the case may be but this story epitomizes why I'm that way. Anyone who has a child who has recovered or significantly improved knows that it's an incredible amount of work and dedication and that it takes a bit of "crazy" to pull it off. In fact I just had a coworker tell me that his friend has a child with autiosm who is an adolescent now but couldn't talk (where others could understand( until he was 8. now he's mainstreamed and goes hunting with them. So anyway I love these stories cause it just confirms that my head, heart, and soul are all in the right places to help Ty.

Riley Betz was in the front room of his Montgomery home playing the new Spiderman video game with his brothers Ryan and Patrick. At the moment he was relaxing, but Riley has crammed a lot of activities into his life for an 8-year-old.

Most recently he earned a blue belt in karate, in addition to his work as a student at McDole Elementary School. This may seem like a typical load for a child Riley's age, but he's worked hard to get there.

When Riley was 16 months old, his mother Mary Kay began to notice the symptoms later diagnosed as autism. He would not respond to his name. He would not even respond to claps behind his head.

"That's when our journey began," Mary Kay said.

From this point on his parents underwent a tireless effort to treat his autism, and streamline him into the school system with his peers. And their efforts have paid off.

A few years ago Mary Kay's largest concern with Riley was making sure that he would improve so he didn't have to enter a group home later in life. Now they are considering college for Riley.

"He knows how to run his own engine," Mary Kay said.

There is now research showing what Riley's family has learned first-hand: Autism is treatable with techniques that have greatly improved over the past several years.

But it is not an easy task.

40-hour-a-week job
The effort for this Montgomery family consisted of everything from attending Kindergarten at a specialized school in DeKalb to various therapies intended to improve Riley's skills for socialization.
The therapies included music therapy and hippotherapy, which involves the use of horses to make people with autism and other disabilities more aware of their surroundings. His family also created a therapy room at his home for in-home treatments. There were evenings that Mary Kay stayed up until 3 a.m. researching Riley's condition. For Riley, the road to socialization became a 40-hour a week job.

Those relentless efforts have since paid off. By the time first grade came around, he improved enough to go to the school at the end of the subdivision. Riley went from a classroom where each student had a specialized aid to a classroom with one teacher and one aid that helped all the students.

"Everything's mainstream," Mary Kay said. "He knows how to do everything. We're just maintaining the skills he has."

In the middle of second grade, more improvements meant that he no longer needed some of the other therapies. He's now in third grade and excels in math. He also has many friends -- another sign that earlier efforts to treat his autism were successful. He does still have some neurological symptoms of autism and has trouble with handwriting, but overall his recovery is going well, she said.

Mary Kay knows she put in a lot of hard work, and had access to excellent resources, but that is not always the case. She is concerned with the number of autistic children who may not receive this level of care and will grow up to live in homes for the developmentally disabled.

"I'm concerned about the kids not getting services," Mary Kay said. "There are 18 and 19 year olds not getting intervention. I was lucky enough to bring my kid back to me."

Once Riley weaned himself off his rigorous schedule, Mary Kay accepted a position with the Autism Society of Illinois and now works full time helping other families address this issue.

She sees everything from parents with young children trying to obtain initial care to trying to locate a place for their child to stay once they are older.

The cost to society becomes greater once the children with autism are older. Though it may seem expensive at first, it costs far less to treat children at the first signs of autism than pay for a lifetime of social security, treatments and housing, she said.

Betz said one in every 66 children is born with autism. It is a number that has been steadily on the rise.

"It's not going away," she said. "If things aren't done it's just going to get worse."