Comparing Notes

We really put ourselves to a difficult test this weekend and learned a painful lesson: Jonathan is still pretty autistic. He is high functioning because he can follow some directions and he is very smart so he can figure things out quickly. But he is really not ready for the mainstream world outside academics. I have to admit that it hit home and even depressed me a bit. When he was first diagnosed with High Functioning Autism, I now feel that he was misdiagnosed. He back then was mid to severe. And now that he is speaking more, and relating more, I would say that he is truly HFA. But the fact that he is in a mainstreamed kindergarten fooled me a bit. And it was painfully obvious this weekend.

We went to visit our friends this weekend and they had another couple over with kids the same age as ours. And Jonathan's behavior was so different and odd, that our friends started up the Autism conversation which led to explaining to the new couple that Jonathan had autism, which made them say "ohhhhh, ok".

I finished reading Jenny McCarthy's book today and found myself comparing notes. I really liked her book. But it is inevitable not to compare. And kept wondering "why if she only did the conservative biomedical approach, did her son recover?" I thought about it all day. We have done so much more than she describes in the book for the past 3 years and Jonathan still has autism. His language is really not age appropriate at all and he still has social problems. One thing that I am glad we didn't have to live is seizures. So I know that she had it rough. I lived it through her book and cried. I cannot imagine. But why do some kids recover more easily than others? What exactly makes some kids such tough nut? Is it the amount of mercury injected into the kids? Is it the amount of hours of behavioral and speech therapy? Who knows. But I am very happy for her though.

I was able to relate to her quite a bit. And all of sudden I felt this huge sadness for not having had the time lately to stay on top of the new therapies, for not handling my finances better so I could do more tests. I am a bit lost actually. Jonathan has regressed and plateaued and I am not sure where to start. But her book was very good, inspirational particularly for the new moms out there, and funny. And she has a section in the back for how to get started. I wish I had had something like that 3 years ago. And I applaud her to getting the word out. I really like what she is doing and I thank her. Someone is going to start listening hopefully. I know she won't stop until someone starts doing something more drastic.

I need to fix my own situation and try to read and research more, try new things, never give up. I need to organize myself so that the insurance pays more. This is ridiculous. I wish I had the luxury of being a stay-home-mom. But you can only do so much, right?

We went to a soccer practice today and Jonathan had a nice time. He dropped the obsession with his teacher today and has been a bit more playful. He is obsessed with Dr. Seuss' books and movies though. And today, when we went to our friends' house, we noticed the Jonathan parallel plays more than what he participates. It is a big upgrade from before, but yet. I am so hungry for "typical behavior" that I can't but notice and feel outraged sometimes.

I have to note that he has made a 200% improvement in the past 6 months since we started the HBOT therapy. But we are not done/there yet.