Tyler says "ho ho ho"

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!

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

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.

!

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

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

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

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

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

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,

xo

6/6/2011

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

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

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

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