The Funplex- or Chuck E Cheese on crack

This past weekend Daddy and Lexi went to a friends birthday party and Robbie and i went to the Funplex. Robbie has been invited to a birthday party there in a few weeks and I wanted to see how he handled it. We walked in to a large room filled with people, noise, lights- pure chaos. I was nervous. I looked down at my little boy and a smile crept on his face. He was excited!! We meet some friends and proceeded to the bumper cars. Robbie's friend ran to get onto the children's bumper cars. Robbie was nervous and stayed with me. We watched for a bit and then he grabbed my hand and pointed to the larger bumper cars. These would fit an adult as well. we waited in line. He was just tall enough- thank you lord!! He picked a car. I drove. He had a blast!! Our friends who were watching could not believe the huge smile on his face as we got rammed by the other cars. (That seemed to be the best part.) When our turn was over- he got out and we walked back over to the kiddie cars. He still was not interested in going on them by himself or with his buddy. We went back into line and waited. He was so good waiting in line. I was proud! we took our turn- had a blast and went on the next activity- snack time! After having a snack- juice box and goldfish crackers- we proceeded to the next thing. It's called foam frenzy. Loud, loud, loud. A million foam balls are flying by your head. there are tons of shooters and a large structure in the middle that shoots ball out in all directions. (Robbie was in kid heaven- and adult hell)

The hard part of the day- the transition to leave. Robbie did not want to leave. He was having fun and honestly we hadn't stayed that long. But as life happens- we had to get home so Dad could scout a basketball game. I gave Robbie the 5 minute warning and the 1 more turn warning. Then I had to physically restrain him and carry him out. (no easy task these days- he's almost 4 years old and wearing 5-6 clothes- big boy!) I did get quite a few looks of horror and pity. But we made it outside, he calmed down and walked to the car on his own.

All in all - it was a great day. Robbie surprised me once again with his ability to handle " chuck E cheese on crack" and his ability to wait his turn. That is tough for any child. We are going to go one more time before the party- preferably on a weekday because Mommy feels overwhelmed on the weekends!!

Wish us luck!

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.

High Anxiety

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.

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!

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!!