Blissfully ignorant

Before I had children, I had my nieces and nephews. In loved them all so-o-o much and they brought great joy to my life. I was 12 when I became an aunt - and it was almost like having a baby sister more than a niece in all honesty. I loved taking them places, going to the park, going to the pool, the museum, or having sleepovers. As much fun as this was, I knew that all this fun is not what parenting was about. I saw that it was work - how much work I would not realize, of course, until I became a parent myself.

When we moved to Camillus, we noticed someone else moved into the neighborhood around the same time. They had a child in a wheelchair. I can remember the feeling I had when I first noticed him. My thoughts went to how difficult that must be for the parents - but then they seemed so joyful when they were out playing in the yard with all three of their kids. It took my breath away.

I noticed for this family, a bus coming to pick up the child. I had heard of No Child Left Behind and Americans with Disabilities Act, and assumed that they must receive some help. I didn't know what that was. When Zach was first diagnosed, several people said how lucky we were to live now, that there were all these things available to him that weren't before, that there were services, that there was help. I believed it too, especially when everything seemed so insurmountable, it was the only thing keeping any hope going. Pop went that bubble this past week.

Zach's two dx's and recommended treatments indicate one-on-one ABA therapy. In 1999, the Surgeon General indicated that "Thirty years of research demonstrated the efficacy of applied behavioral methods". Yes folks, it has been around that long. The New York State Department of Health Early Intervention Program (1999) Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, recommends a minimum of 20 hours of ABA a week for autism. The Onondaga County Autistic Spectrum Disorders Resource Guide for Families and Professionals lists ABA as "the predominant approach for treating children."

So what were we told at our 6 month review/IFSP yesterday? There are no ABA resources for children's Zach's age. She went on to describe various resource issues ("there are no certified ABA therapists in the are" she said although I gave her 6 names), there are no existing contracts with the county with any of these individuals (I told her of one woman who was under contract as a social worker and had ABA certification), blah blah blah. I finally told her that legally, resource issues are not a valid excuse for not providing Zach with the therapy he needs. She went on to say, "well what you want, we don't have. " To which I replied something on the order of - this is not about what I want, it is what two professionals have prescribed for him, and the very manuals that you have provided to me recommend. I asked her if the onus was on us to provide these things - to which she quickly backed down.

I cannot imagine being one of these trained monkeys who know damn well what the score is, yet spew their lying politics and rhetoric in the face of people within crisis. If you don't believe in what you are doing, how can you do it? If you believe in the information that you provide for me, than how in God's name do you say it doesn't exist with a straight face?

So no - adequate services are not likely to be provided to Zach anytime soon - at least not on the county's dime. The funny part about this is that thus far - they have not spent one dollar of their money on him - everything has come from our insurance - our $$.

This has got to get better folks.