12/28/09

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

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

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

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

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

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

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 -

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.

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

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

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

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

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

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

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

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

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

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."

9/14/09

Here's a pic of Ty and Ben on Ty's first day of school and also a video from his classroom that first day. They invited parents to come to the first hour of school into the classroom and then we all went to orientation. Tyler really struggled with the first day so you can see in the video he's not overly excited, however, every day since then he's been very very happy and is loving school. He started clinging to me and crying from the moment we got out of the car and cried for good 15 mins once we were inside the class...poor guy. Then he was fine when I went to orientation but at some point during orientation the kids went riding their bikes by and Tyler saw me as he rode by..stopped...and looked again and then started to cry. Poor baby. his teacher left orientation to go check on him and make sure he was ok.. he was fine once they got him back to class.


On the first day of school..or maybe the second.. everyone was singing a song and there was a gesture during part of the song that went with the phrase "whoa" and Tyler said it, yeah!

Let's see... Ty had an appt with his DAN doctor appt last week. Steve took Tyler and called me when it was done and seemed rather hopeless about the situation. he said it wasn't anything like the first appointment that left us both so hopeful. The doc reviewed the urine test results with Steve and for the most part nothing is out of the normal, i.e. not much else we can do in terms of supplements, etc. I told Steve we should look at it like a good thing.. ok we've been doing biomedical for almost 2 years, adn now we have the right recipe of stuff for his body to be healthy.. now that we've done that.. let's move on to therapy,i.e. speech, school, etc. His body is healthy now and is best suited for learning. So I was feeling quite happy about that but after getting the doctors notes you can see the doctor is a bit discouraged and that probably rubbed off on Steve.

The docs words were: "My impression is that he is a 3-year-old boy with a history of autism and a nonregressive encephalopathy (small head) who has shown some apparent improvements with biomedical therapies mostly affecting his socialization with his parents (believe this is from the study not biomed). He still has significant problems with aphasia and lack of interest in peers and a tendency for unusual play such as spinning the wheels of cars. He has not been having the kid of dramatic improvements that I prefer to see."

So yeah that's kind of a downer.. must be he typically sees more improvement ... I thought we'd seen a lot of improvement but it mustbe there's usually more. He's recommending us to consider HBOT, chelation and some other sort of therapY I haven't heard of. HBOT is $1500 a month to rent the machine... 30% of kids show substantial improvement with HBOT. We discussed and need to discuss more and I'm certainly open to the idea but we just don't have $1500 right now.. so for now I think we'll continue with speech and school and the biomed we are doing now and maybe consider HBOT when we get a little bit further down the road and somehow find a way to get ahead financially, ha like that's gonna happen. So for now, we'll stay the course. Still working to try to find a way to get insurance to pay for speech so we can maybe use flex spending to somehow pay for music therapy (if prescribed perhaps!!).

So on Friday night, I was in the kitchen making dinner and I heard the boys playing with the train int he living room (often a source for fighting between them)... I hear Ben say "here you go Ty Ty, you can have the train" and I look to see Ben handing Tyler the train. HOLY SMOKES! I ran as fast as I could into the room and was like, yeah dude, you rock, hgih five for sharing! And luckily I had a bin full of dinosaur "stuff" in my car for rewards for potty training so he could a new dinosaur and a dinosaur egg that expands in water. He was overjoyed, whoppeee so was I. I long for them to play together and tehre were a few times they were both playing with the train and not fighting.. that's the first step :)

So Saturday night was just Ben and Mom time.. I took him out ot eat at a restaurant that had an outdoor patio and a playground so he had a fantastic time. He made friends with other kids and had them all playing dinosaurs adn running around and roaring. Although it also made me realize how much I really need to get him into some sort of social actvity so he can realize there is more to life than dinosaurs. And then we went to an annual otudoor movie night at a friends house. They showed mary poppins and it started late so he wasn't too interested but.....we found a train inside to play with he cashed out on teh way home.

Sunday we took both boys out to eat. We hadn't in a long time. We talked about how difficult it had been to keep tyler engaged recently and how I needed help coming up with ideas/supports to bring with us to keep him sitting. We decided to load up some of his TAg books he hadnt' played with in a while and it worked perfectly..we never even had to play a video. And for the first time.. I thought.. it is possible that we could have managed this lunch with just one parent.. woudl have been a bit hectic but possible.. Then we went to the park and same story. Tyler was having a ball climbing up the silde and sliding down and Ben was making friends. So for the first time ever at the park i thought.. if it were just me... I could have done it alone.. Stay close to ty and keep sort of a zone defense on Ben :)..... My boys are growing up.

So that's about it.. Ben and Steve went to a birthday party yesterday afternoon whiel I hung out with Ty. Today I work 6 - 1:30, Steve dropped the boys off. I pick up Ty from school at 1:45, take him to Speech therapy from 2 - 3:00.. then drop him at daycare around 3:40 and really hope he sleeps even for 45 mins while I run home and change my clothes, pack up dinner and snacks. Pick up the boys at 5:00 and head back to Ty's school for parent support (KIAT) group. If Tyler does not nap, he'll never make it.. he'll probably fall asleep on the way there so fingers crossed. Ben loves the play time with other kids. THe other couple in group right now has 2 girls, one with autism and one without so they are a good match for our kids and I also watn to get Ben intersted in going to school so he can then hopefully get interested in potty training. so that's from 6 - 8.. by the time we get home and kids into bed it's close to 9;15 and then we pack up for the next day, Tyler's lunch, etc. Monday's are exhausting once we are in teh school year that's for sure :) All worth it though.

9/8/09

I was happy to see that my last post was a very happy post. I don't wanna be one of those people that is always writing depressing stories! I swear we do have some very happy moments in our family and also some very hopeful moments. It's just, well, this weekend was hard. I was very thankful that Ben was camping with Grandma, having a wonderful time. As for why this weekend was difficult, it's kind of a whole bunch of things happening at one time and a lot of planning, research and financial stuff to work through in the background causing some tension between Steve and I and when you add on to that Tyler having a hard weekend and really struggling with transitions, it just made for an emotional and physically draining week. We had wanted to take advantage of being a one kid family and do something with Tyler that may take more than one person to manage. We were thinking a fair but couldn't find any local for this weekend and eventually we decided on the zoo. To this point, Ty has not shown much interest in the zoo. I remember from working at Cedar Point that you never know when parks are gonna be busy...a lot of people would think the holiday weekend would attract many visitors so people would stay home and it would be a ghost town. So anyway, we went to the Toledo zoo..as soon as we pulled into the parking lot and saw that we'd have to park in the back part of the overfill lot, I knew it wasn't a good idea. Steve and I often have trouble with the way I communicate what's best for Tyler, etc. we in fact had some issues earlier in the week so I wasn't necessarily as insistent as I would normally be, I was trying to keep the peace and keep everyone happy. So I commented on how it may not be such a good idea. Steve thought we should at least try so we did. We luckily were able to catch a bus to the zoo entrance (that's how far away we were!!) and didn't have to wait, Ty really isn't good at waiting yet and transitions are really tough for him. So in essence that was the majority of the issue, transitions. He struggles to not understand when he's going from one activity to another or has to wait a long time to get to the other activity, especially when he doesn't understand what that activity is. So add that to the still really long walk we had to get into the zoo and the mass amount of people and well even I was a bit overwhelmed. I had remembered he liked the sloth bears and I had really wanted to get him to the new children's area cause I had read good things about it and it seemed like something he'd really like. The problem was just getting him to the bears, and once we did there were a mass amount of people trying to see them. Tyler wanted to climb through the fence to see and obviously he can't so that started the melt down. His melt downs consist of him falling to the ground, crying and hitting himself in the face and refusing to walk. I tried to console and calm him and get him (quickly) to the other side where there was a window right next to the bears, but there were sooo many people, he was just beside himself. He didnt' want up, he didn't want down, he was just hitting himself and crying and gritting his teeth. I gave him squeezes and talked to him very gently and softly. He wanted up so I picked him up but he's stiff and still kind of writhing.. we were trying to find the new childrens area entrance and he just got really mad at me and clenched his jaw and dove in to take a bite of my chest/shoulder. I pulled him away from me and sat him down and gave him lots of compressions, we pushed our heads hard together as I was kneeling down with him and we just pushed against eachother and both cried. I felt so incredibly bad for him. I think this was the first time that Tyler melted down that I also did. The thing was, I wasn't upset or mad at him at all, I just felt really really guilty that I knew it wasn't a good idea and went against my better judgement and then Tyler had to pay the price. We were both hot and sweaty and overwhelmed and it was just hard. It's so hard. I really had tried every way I knew to help support him through the transition to keep calm to find ways to happily get him to the next place but nothing was working so there we both were..crying at the zoo. WHO CRIES AT THE ZOO! So I got him interested in a toy and sort of manhandled him to his stroller and Steve high tailed it to the playground area which was enough to let him run around a bit (he was still melting down about every 1 - 2 mins) and enough time for me to gather myself as I was still melting down. We had it all pulled together and decided to look at the gorillas..again way too many people to get close without being in a mass so we decided that wasn't' a good idea.. on our way out we found the new c children's area so that's where we spent our time and where our pictures are from. There were three things he liked in the children's center... the animal masks hanging n the front (see video and pics - i'm singing snake in the one pic, he loves to touch the objects and have you sign it for him) the stream and the bees in the tree in the play area. We spent lots of time at the stream, really just recouping mentally while he enjoyed the water, although at one point he did try to drown another little girl who came a little to close to the rocks he and I were playing with, luckily I was close enough to grab her before she bit it and the mom thanked me as well, she's like, good catch! So anyway, things like this..the stream that he loved are very difficult to transition him away from, especially when he was already overstimulated and he struggles to understand what's coming next. So I somehow managed to get him out of that stream without too much of a melt down, shew... we changed his clothes and his diaper right there on a bench and I could care less who saw or how inappropriate it was cause there was no way he was gonna last until a bathroom. So the play area he loved as well at least the bees in the tree but as you'll see in a pic I did get him in the honeycomb for a minute. We left after the children's area.

Coming up with ideas/ways to soothe Tyler is hard, especially when the old stand bys are not working. Coming up with ways to transition Tyler from one activity to the next is also hard, especially when he's already been struggling. So this was a day I was feeling a bit under the weather and Tyler looks to me for comfort (he actually sort of growled at Steve when he tried to take over) and I'm the one most trained to help him but it's hard, it's exhausting physically and a back breaker sometimes, he can be very strong! It's upsetting to see him so upset and it's just hard to always have your brain working at full speed to come up with new ideas, etc. Tyler at home or in a familiar environment is not the same as Tyler in a new environment. It takes a considerable amount of effort to just get him to physically move from one place to another, let alone to keep him engaged and happy while in that new place. There are times we turn down an activity or get together because I just don't have the energy to make it all happen sometimes. The weeks can be draining, now that school is in session the schedule is draining. Worth it absolutely but sometimes the things that aren't vital to his well being or our families happiness, sometimes those things aren't possible. not if we are all able to maintain our sanity. Gosh sorry to be so depressing today, life in the world of autism is tough and most days I keep everyone happy but this weekend, well I had just lost steam. Luckily I've got it back and I'm really happy that Ty is back in school, we resume speech on a normal schedule next week and we are actively trying to figure out a way to get Ben in some sort of group activity and get him more involved with peers as well as find a way to figure out some more ways to free up some finances to help easy the burden. So hopefully more good things to come. Please remember that this journal is a way for me to capture all that autism means and does to our family. So one day when Tyler is 9 and we all have a wonderful family day at the zoo.. I can go back and read about this trip to the zoo and know how far we've come and how all the hard work was more than worth it. If anything, this trip to the zoo, just empowered me even more to know that I have to keep my strength and will power to keep Tyler moving forward in life so that he doesn't have to feel the way he did that day anymore.