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.