So, Alex did well at school on Friday...much better than Thursday. Sometimes we just don't know what causes his misbehavior. It is so hard to get detail/information out of him on how he is feeling or what is going on in his little brain. I am so grateful though that the teachers/administrators are willing to work with him. Makes be happy to know he is in good hands. As I write this, he is still up...it is almost 10:00...we have been struggling with getting him to go to sleep lately...hope this doesn't cause problems tomorrow.

Today I met with my Representative to the Ohio House. In a previous blog I mentioned how we had NO insurance coverage for therapy for Alex. Well, Ohio is trying to pass a bill to require private insurance companies to cover therapy for Autism. Now, I have strong feelings about government being too involved in the private sector. That being said...there is really no excuse for an insurance company to not cover these children. We are not expecting full coverage. We know that there are deductibles, copays, limited number of visits, etc. However, some of these families cannot provide services for their children at the cost (for 1 hour of Occupational Therapy it was over $100 at Children's Hospital). So, we were told that if Alex had a physical problem with his ears or mouth that caused a speech delay we would get 20 visits a year for speech therapy. Since he had a "developmental" disorder this coverage was 0. Why is that the case? Also, I heard from a mother at my support group last night that has coverage for her child through her husband's new work insurance. His old insurance didn't cover therapy but the new insurance does. She said that it doesn't cover everything they need but at least they get 20 visits. I just don't understand!

It was nice to talk to my representative and to have him see our personal story/side. Not to mention that I felt like I was doing something good today.

Now, what if insurance is covering therapies...??? I wonder what therapies would be covered. This is of concern for us because we utilized a wonderful organization in Piqua, Ohio called the Hahn-Hufford Center for Hope/Rehabilitation Center for Neurological Development and The Nicholas School. This is a non-profit organization that provides therapies for patients with neurological disorders. Now this isn't your traditional speech and occupational therapies. So, would private insurance consider this an out-of-network service? Anyway, the cost of these services for us was so worth the 30 minute drive one way and the time commitment. Alex participated in the rehab program for 3 years. His growth was amazing during this time. He started with a 6 week intensive program that then went down to 2 days a week then finally to 1 day a week as he was getting more involved with school. The work they do there is just so amazing I find it hard to put into words.

Alex had so many sensory problems but by the time he was done with the program he would walk/play in sand at the beach!!! Now to appreciate the greatness of this....he would NOT walk on wet pavement even with shoes on before this. He didn't like to get his clothing wet...wouldn't get messy...had severe sound sensitivity...didn't like tags in his clothes. He still struggles with loud noises like at a basketball game (the buzzer) and is uncomfortable getting clothes wet at times but he has come a long, long way. Tags in clothes no longer bother him!!

He also attended the Nicholas School for 5 months and I'll talk more about that when we get to his schooling.

If anyone is reading this and lives near Piqua, Ohio, please check out the "Piqua Center"

www.rcnd.org

Because of this organization we were able to provide Alex with almost 3 hours of programming for less than $60 (at the time we were taking him this was the fee). It still cost our family over $8,000 per year during this time to provide services for Alex but compared to what other families were spending, we felt very fortunate. Research shows families spending $20,000 to $40,000 for their children per year.

I just can't imagine. My heart aches for them!