6/8/09

Tyler and I had a weekend to ourselves for the most part. We got a call from school that Tyler was running a slight fever on Friday and the kid he had been paired all week was out sick with a high fever. So when I picked Tyler up, I took him home with me. Steve and Ben already has plans for the weekend so they just left a day early (to avoid the illness)for their fun. Needless to say, Tyler was not sick, yeah!

On Saturday, he and I went to U of M as planned and he did great. We were meeting a location I had not been before so it's hard to prepare Tyler when I don't know where we are going. We parked in a structure, rode the elevator a couple of times as I wasn't' sure where the walkway was and finally found our way to the building. All went well, he was in a great mood and didn't get anxious about the entry or exit into any of the new places. We met the person we were supposed to see and walked to the lecture hall which was locked. So she gave Tyler the bin of toys to play with while we waited. it only took a minute to get someone to unlock it and it was time to move. So very hard for Tyler to understand why he only got 30 seconds to play Witt he new toys and then someone was taking them away so we told Tyler we were moving and let him carry one side of the bin so he would understand that he got to continue to play with him in just a few minutes.

So all and all things went well, he was great in the room. We kind of talked about ways to interact with Tyler and how to gauge his frustration levels and what kind of responses you can get out of him, etc. Again the point of all of this is training, however, the more happy and successful Tyler is, the more people are gonna learn from it. Anyway, the best part is that she commented on how great Tyler is doing. She hasn't seen him since he was about 17 months old and then diagnosed him with autism. She said he's so much more aware and responsiveness and willing and wanting to learn. I also told her we were in Ann Arbor School preschool and she was very happy to hear that. You know.. it always feels good to have professionals comment on how well he's doign and that we are making the right choices for him.

That's not to say we don't have a long ways to go though. While we were at the lecture hall, when her and I started talking and Tyler was kind of done with the toys, he starting running back and forth on the floor. If Tyler doesn't have anything structured to do and is bored with his environment, he'll run. The more he runs, the more clumsy he gets and he ends up hurtning himself. Unless you've watched him for a significant period of time, it's hard to explain how difficult it is to keep him regulated and not running. Your day is structured aruodn Tyler's learning activities and ways to keep Tyler engaged, happy and or learning so that he's not wearing out teh floor. You have to be thinking one or two steps ahead about what's the next activity. So yeah, he's come a long way but still a long way to go.

So this is the last week of school for Tyler :( Until it picks up again for a few weeks in July. The parapro who works with Tyler each day is gonna be teaching the session so that will be good for him.


Steve's grandma told his mom and him about a book she had read called "The Horse Boy: A Father's Quest to Heal His Son". She said that it truly enlightened her as to how much work it is to raise a child with Autism. She learned through the book the work and time that goes into transporting a child with Autism and all the things that you have to take with you to ensure the child will be okay. She also learned that parents will take what ever steps necessary to treat Autism. Here is a description I found online, I think I may buy it. The Horse Boy is the dramatic and heartwarming story of that impossible adventure. In Mongolia, the family found undreamed of landscapes and people, unbearable setbacks, and advances beyond their wildest dreams. This is a deeply moving, truly one-of-a-kind story--of a family willing to go to the ends of the earth to help their son, and of a boy learning to connect with the world for the first time. It's also been made into a film, here's the clip: http://www.horseboymovie.com/film-trailer.php

Steve and I talked the other night about the fine line between hope and reality. The reality of it is that Tyler may never speak and may never be able to live an independent life; our hope is that he does speak, that he can have relationships and that he can life as an independent adult with family and friends of his own. Although I believe in hope and believe that you have to envision life the way you want it to happen in order for it to come true (self-fulfilling prophecy), as a parent you also reserve yourself a bit or you can get overwhelemed with reality. So as the driver of his education, therapy, planning and future, I have all the hope in the world and believe we are making the right steps towards a brighter future for him and our entire family, in fact sometimes I'm not sure I do enough. But as a parent who loves and adores her boy, I cannot truly believe that he will recover because the pain would be too unbearable for me to have it not happen. Statistically the chances of recovery are slim, he's moderate to severe and has had autism since the beginning, not the regressive form.