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."