Diet changes

We have kept Robbie on a very strict Gluten free, casein free (dairy), preservative free, artificial color free, high fructose corn syrup free diet for the last 8 months. We did this because after reading a lot of the literature- this course of action is suggested. We felt it was worth a try because it wouldn't hurt him- or his sister. Over the past few weeks Robbie had been helping himself to cheese, bagels, etc. The things that had been off limits. I've been watching closely and making sure he doesn't over eat those things. He seems fine. He doesn't have any bowel issues. His behavior is the same. In fact, I believe he is eating better- probably because things taste better and he feels satisfied. I am still limiting preservatives, colors and high fructose corn syrup but bread and cheese seem to be ok. I bought the deceptively delicious cookbook by Jessica Seinfeld. It tells you to puree vegetables and add them to foods- like mac n cheese and couscous. I tried the one of the recipes on Tuesday. "Yuck, this is gross." Most mothers would be upset by this statement. It was music to my ears. Robbie completed a sentence. Usually he would push the food away if he didn't want it.
He's had a good week in school , has been sleeping through the night, and hasn't asked for the pacifier as much. I hope this is a sign of more good things to come!!! ( And we can all eat Pizza again!!!!!!)

Birthday Parties

We all went to celebrate one of Robbie's cousin's first birthday. We were excited because it was family and Robbie usually does really well with family. As more and more people came to the party- Robbie began going upstairs for longer periods of time. He would stand at the stairwell and become focused on the ceiling-and his ability to touch it from the stairwell. He wanted to play upstairs in his cousin's room, away from the crowd. I wish I could say this wasn't heart breaking for us- but it was. We probably should have expected it- but we didn't. As I watched the other kids walk around and play with toys, I felt sad. My son was upstairs and refused to come down. It also becomes more and more clear how behind Robbie is when I see other "typical" children. I listen to them speak and ask for what they want. I watch them interact with each other so easily and I feel sad. I wish I didn't feel that way.
Another frustration has been with services and diet. How much, how long, what to avoid, what to add. No one can tell you what the correct amount is. It is a huge guessing game. When someone is ill, a doctor can recommend a treatment program or course of action. With Autism Spectrum disorder- the spectrum is so large- there isn't a clear path. I am frustrated. I am sad. I am scared for my little boy. He is making great strides- don't misunderstand. His speech is improving dramatically. His "playing" is appropriate. But, we still have a long way to go.

Temple Grandin

Temple Grandin is a "famous" person who is Autistic. HBO had a movie based on her life which aired tonight. Claire Danes was the actress and what an amazing job she did. Honestly I cried through the entire program. What this woman has accomplished is amazing. But what struck me were the subtle behaviors in Claire Danes "Temple." Watching her try to interact with others and even watching her eat- the very selective things she would. Why is Robbie so selective about what he will eat? Why does he eat 5 apples or 5 oranges at one time? Why does he prefer to sit underneath the table at our local restaurant once he has finished eating? How can we fully engage his extra ordinary senses and aid the ones that are overwhelming?

I feel very lucky that Robbie does not have sensory issues with being hugged and touched as "classic" autistic individuals seem to. He thrives on hugs, deep pressure and hot showers. temple had built herself a machine to administer "hugs" or deep pressure because she did not like to be touched. That must be heart breaking for a parent. The question that is looming in my mind is how much do we push to get him out of his comfort zone? We are working on things that are inappropriate. Holding onto my leg as we walk somewhere as opposed to holding my hand. But do we push for more social events? The birthday parties at chuck e cheese? I find those overwhelming.

I bring this up because "Temple" talks about how she was pushed out of her comfort zone. She was told to picture life as a series of doors and by walking through them you will find opportunities. Autistic individuals are incredibly visual. The door analogy is an excellent example of how to explain situations.