What about Jenny?

I received a lot of emails and phone calls from friends and family regarding the Oprah show that featured two celebrities whose children have autism. Unfortunately I didn't watch the show. (frankly, I forget sometimes that there is television outside of PBS and Nick Jr.) But I did read the article at Oprah.com and here was one of my responses to an email:

I went to Oprah to read about this. It's hard to get something really useful from people whose children have Autistic Disorder because the "symptoms" are so different than Aspergers, yet so many are the same. I usually read about everything though. I have one blog that I keep up with and her 10 year old only says words and phrases at a time and even the number of phrases are limited. I just can't relate to that, but she does have great topics of discussion because she is a phd and writer for an online mag.

...The controversy with what Mccarthy advocates is on whether Autism is a disease or illness as opposed to a disorder, and they are trying to "heal" them. I think of it as "adaptation." Obviously it doesn't go away or Terry wouldn't still have issues. He may just be mild Aspergers or right outside of the spectrum, but his disabilities are real and it has been hard for me to not get frustrated with him, it's more frustration with myself and my patience. It's harder when it is an adult. But I think that Eric will be able "adapt" better when he is an adult just from the fact that he is growing up in a generation that is a lot more aware than ours.

To add to that, something I was discussing to someone in person, was that it isn't really fair to tell a child that he has been "cured" from autism. We have been told that there is no cure for Aspergers and I believe that. (I do believe that people with autistic disorder can improve their diagnosis to higher functioning) Why isn't it fair? because we have NO idea what is really going on in their head because they cannot communicate well. So if we tell them they are cured, and then they wonder why they feel rejected or like an outsider or frustrated because they don't know what to say in a new situation, that could lead to extreme things like depression, teen pregnancies, suicide, etc. often without any warning. However, if they know that they have autism then they have an explanation of why they are the way they are. The person still has a choice to either use it as an excuse or to use it as awareness to adapt to it.

Terry and I use little scripts. We always have and we would just crack up at each other every time we would "reenact" a skit of some sort. But now I know why we did it. Not just to be silly, but we were in fact communicating. Crazy.

We started the gluten-free diet about mid-June about 2 weeks before Eric's official diagnosis, and I so have to credit McCarthy for my being aware of this, but after I read her post on oprah.com I connected the fact that since we was on the diet he started to talk a lot more and form complete sentences. I think it was about 6 weeks into the diet that he started doing that. I might have to check out past blogs to know for sure. The other thing I noticed was affection. The first time I noticed it was about mid August when he came out of church (I can't rememer if it was choir or sunday school class) he ran towards me with open arms saying "mommy!" as if he was happy to see me. I had never really experienced that before and I was a little shocked and felt like a normal mom at the same time. I think he probably picked that up from Ryan who is very affectionate and huggy-kissy. But I can tell that Eric is trying to express his own feelings, he may be using someone else's method, but I believe that it is truly his own feelings. He has even improved in the "I love you" department. First, when we said I love you, he would say nothing. Then he would repeat us and say "love lou." Now, as reported by Terry at the end of the bedtime routine, he will respond with "I love lou, too, daddy" which tells me that he isn't just repeating our words but is directing them to Terry. (He still says "I love lou" to me. sniff. I'll keep you posted when he directs it to me)

I think that is what I think will be difficult in this journey of Aspergers, especially with the early intervention. The fact that he will learn to interact, communicate, etc with the typical children make it really difficult to see a disorder in him. If you haven't seen Mozart and the Whale, please do. It is really eye-opening to what Aspergers can look like in different people.

I mean if Terry made it through to adulthood without a clue, then I think Eric might have the same chances. But the bottom line is that I think it is so key that he understand his condition so that he can understand himself if he does have a meltdown which seemed to come from no where or if he does feel like he is the leading role in the production of Life and feeling like he is not living his own life, that he is different inside than what everyone perceives of him or if he can't express himself very well, to not give up, etc etc. It is MY job as his parent to raise him to live with integrity to why he was put on this earth and NOT to make excuses because of circumstances. Tall order - but I'm up for the challenge....I hope.