I had an interesting conversation last night with the spouse of a friend who is in charge of the Autism programs in the Cambridge MA school system. The topic of anxiety came up. I've read and know from experience that autistic children suffer from high levels of anxiety. I had never really though to break it down into the simplest components. Why is Robbie freaking out when I turn off the Backyardigan's? Is it because he is not getting what he wants?- Sure- that is partly true, but it never occurred to me is he may feel like he will never be able to watch that TV show again. He may think he will never go to the park again or the playground again. If he is enjoying something, when we transition, there is real fear and anxiety.
I explained how Robbie is doing. The woman I was speaking with was very excited to hear he is verbal." That is a great sign "- she told me. "The fact that he can talk and is learning new words is great. He may end up with an Aspergers diagnosis." That thought had never crossed my mind. That is also not what I wanted to hear. He may end up with no diagnosis- I almost shouted. I know she was just trying to be helpful but for parents of Autistic children- the dream of Robbie being considered "normal" having friends, going to college, working and living independently, getting married and having his own family are the goals we strive for. Unrealistic? God I hope not.
Monday, January 25, 2010
Sunday, January 24, 2010
A great day- thank you Robbie!!
The other day Robbie,Lexi and I were invited to Chick Fil A with 2 friends of mine and their boys- who are Robbie's age. There is an indoor playground at this restaurant where the kids can run around as mothers sit to have actual conversations! The idea sounded wonderful but I had a lot of anxiety over how we'd do in this situation. First- Robbie can't eat 90% of the menu- what if he saw what the other kids had and got upset? I checked the website and was pleasantly surprised to see waffle fries, fruit cups and juice boxes!! I packed our Gluten free chicken nuggets and organic ketchup and prayed for a meltdown free afternoon.
At the restaurant the kids ate lunch and then went into the play area. Robbie was able to run freely- and had a blast. While he did not play with the other boys- he did acknowledge other kids, made some eye contact and seemed very content. The worst part of these situations seem to be the transition home. Robbie generally has a hard time leaving places once we've gotten comfortable. However on this day- I said time to get your socks and shoes on so we can go home. To my surprise he sat down ready to do what I had asked. For those who don't have children on the spectrum- you're probably thinking all kids have trouble leaving the playground. Why is this such a big deal? Most kids will bargain for 1 more turn but do not have total meltdowns. These meltdowns are hard to control and I end up holding Robbie tightly to avoid getting hit or kicked. Then there is the screaming and crying. Other people stare at you like you are a bad parent who can't control your child. To have a peaceful end to the lunch date was all I wished for. It was wonderful!
At the restaurant the kids ate lunch and then went into the play area. Robbie was able to run freely- and had a blast. While he did not play with the other boys- he did acknowledge other kids, made some eye contact and seemed very content. The worst part of these situations seem to be the transition home. Robbie generally has a hard time leaving places once we've gotten comfortable. However on this day- I said time to get your socks and shoes on so we can go home. To my surprise he sat down ready to do what I had asked. For those who don't have children on the spectrum- you're probably thinking all kids have trouble leaving the playground. Why is this such a big deal? Most kids will bargain for 1 more turn but do not have total meltdowns. These meltdowns are hard to control and I end up holding Robbie tightly to avoid getting hit or kicked. Then there is the screaming and crying. Other people stare at you like you are a bad parent who can't control your child. To have a peaceful end to the lunch date was all I wished for. It was wonderful!
Thursday, January 21, 2010
Update
I haven't written on the blog in weeks. In part due to some changes in our family and because I don't want to "Jinx" how well things have been going. Robbie did very well over the holidays. He was very pleased to see all the presents under the tree and opened, not only his gifts, but all the gifts. This was a pleasant surprise for us because last year he didn't want to ripe the paper and cried "oh no" when we did. That is depressing as a parent. You get so excited to see your children's faces light up at the sight of the gifts.
The first week back to school was challenging as sleep became rare. He was up most of the night running back and forth in the hallway and talking very loudly. We put an air purifier in the room where he sleeps (ours). This device has a soothing white noise. It seems to have done the trick- I hope!! There is nothing worse than not sleeping. It affects your whole being- body, mood, soul!
Now we are plugging along and working hard. I am being trained in ABA therapy and am trying to instill it in everyday activities. It's interesting to me that Robbie will not sit down and "work" with me at home but we will with his dad, who is also working very hard with him. I am trying to get him out of the house to get him to focus and complete different tasks. (People at the library do look at us- but I try to keep it short)
My quote of the week for Robbie is "this is Awesome!" as he was eating corn for dinner- a favorite. One day at a time!!
The first week back to school was challenging as sleep became rare. He was up most of the night running back and forth in the hallway and talking very loudly. We put an air purifier in the room where he sleeps (ours). This device has a soothing white noise. It seems to have done the trick- I hope!! There is nothing worse than not sleeping. It affects your whole being- body, mood, soul!
Now we are plugging along and working hard. I am being trained in ABA therapy and am trying to instill it in everyday activities. It's interesting to me that Robbie will not sit down and "work" with me at home but we will with his dad, who is also working very hard with him. I am trying to get him out of the house to get him to focus and complete different tasks. (People at the library do look at us- but I try to keep it short)
My quote of the week for Robbie is "this is Awesome!" as he was eating corn for dinner- a favorite. One day at a time!!
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