Saturday, March 15, 2014
I remember years before my Donomite's diagnos of Autism, there was a story of a young boy who had missed out on therapy and an education. He was Autistic. He had limited verbal skills, and hadn't had a proper education. Apparently he slipped through the cracks and then became a victim of red tape. I'm not sure why, but this story had a major impact on me. I felt a strong pull to it and wasn't sure why. It stayed with me.
As my Donomite was developing and I began to suspect that something wasn't quite right, the story of this little boy always popped into my thoughts. It was why I had asked that he be assessed for Autism. I was told they don't usually diagnos children before 36 months, but as a parent I had a right to request it. And so I did.
All through Early Intervention, and pre-school, as I went through therapist, and schools, the story would somehow pop into my thoughts. I think it's why I paid such close attention to his therapists and his placements.
As I began the turning five process, I paid careful attention to each step. Attended whatever workshops and meetings that were offered. I never wanted to miss anything or have my Dono get lost in red tape. This was a stressful time in my life. I didn't want to fail my child or myself. It was a bumpy road, to say the least.
Kindergarten began, and I loved his teacher. She kept constant communication with me and Dono seemed to be doing well. But, every so often, I would wonder where was that little boy now. Was he getting a proper education?
Dono's second year I began to notice a decrease in his progress and he was stimming a lot. He was doing things he'd never done before. Such as hitting himself, screeching, and scripting more than usual. His eye contact and he wasn't engaging as well as was before. This worried me. So I brought it to his teachers attention. I found out that he wasn't receiving OT. This made me angry! Why wasn't I told? OT is a crucial necessity in Dono's Progress. He has major sensory issues, and needs to constantly have them addressed. I thought of the little boy lost in the system red tape, and my heart hurt. Then I began to wonder about all the other children that were lost and/or would eventually be lost. All the parents/guardians that didn't know they could fight back. I intended to, I did and I still am!
We are in Dono's 3rd year, and I still love his teacher, but the Dept of Education and the schools administration are horrible. I won't stand for it, and I will not allow my son to be swallowed up in the red tape. I have a plan, and just like a chess match I am the Queen and I will protect my King!