Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 3 , Issue 1 Date: Spring, 2003 Topic: Expectations Through Life's Passages

I Am the Expert on My Child

by Anonymous

Out of all the experiences I have had to date while parenting my special needs child the transition into school is the most difficult and regrettable experience. My child did not have services prior to entering school, nor had my child experienced daycare or any significant amount of time away from mom. I received the diagnosis PDD-NOS from a pediatric neurologist with little explanation of what this meant two months after my childís 3rd birthday. The only advice that he gave me was that I needed to call the school district and get the child enrolled immediately. He said the school staff would know what to do and that he did not need to see us again. I rushed home with my 3yr.old and 3-month old baby and called the school district immediately. The school explained that there were procedures to follow and they would get back to me. They did, and when all was said and done it took them 2 full months to get through the paper work and enroll my child in the integrated preschool program in our town. This was following the law. At the time I had no knowledge that my child was part of an autism epidemic and had yet to learn that the only proven therapy for saving a child from autism was ABA.

When the actual day arrived for my child to transition into school I was still in a state of shock. This was my first born and it was not as I had planned at all. I had planned to keep my baby home with me for 2 more years. And yet I was optimistic that this group of professionals knew what they were doing. I was naive. After all this is what the doctor had prescribed. I had thoughts like: They have other kids in the school with this diagnosis, so they must know what to do; they took 2 full months to prepare for his entrance into school, so they must have a plan. I knew it was a bad sign when we arrived for his first day and they did not even have his name on a hook for his coat. There was no plan. When I left the classroom within 5 minutes they needed me back because he was hysterical. In short order the whole school staff and their May Institute consultant proved to me that they did not know what they were doing. I spent 2 months with my then 5 month old baby sitting in a closet outside my childís classroom while these professionals generated data sheets to record how many times my child left the room to find me as they slowly shifted the door from open to ľ shut to Ĺ shut etcÖ This was their plan. To them this was progress. To me this was torture. None of the staff could touch him because if they did he dropped to the floor and screamed. To them this was acceptable. To me this was a clear sign that they did not know what they were doing. My only question was where to turn now?

The clock was ticking in my head. It had begun with a physicianís less than comforting words and had not stopped. All I could see was that these people were wasting precious time and I had to do something. I went to ARC support groups, I read books on crazy diets, and finally I turned to my educational background to help me. I am a scientist. I have a Ph.D. in science from a prestigious university. So, I started calling the scientists studying autism. They returned my calls and this is where real help began. I found my way to LADDERS, a group of doctors who actually wanted to see my child on a regular basis. I learned about ABA and had a standoff with my school about hiring someone qualified to provide this as home-based service for my child. Following a month of home-based ABA during the summer, when we returned to school in the fall my child was finally ready to cooperate and take direction from school staff. Eight months after my child was diagnosed and 6 months after our first day of school we started to make real progress. Two years later we are still making progress thanks to 12 hrs/week of home based ABA in addition to 12.5 hrs/week of integrated preschool and additional speech and OT services, which we pay for. We are also still fighting the school district to maintain the right program for our child. Managing services, Dr. appointments, advocates, and lawyers is my full time job. However, I am always left to wonder what that 8 months cost my child? Why didnít the physician say I needed to get ABA for my child not just tell me to call the school district? Why is it legal to take 2 full months to get these kids into school? Why didnít the school district provide the home based ABA to ease an obviously difficult transition for a child who was extremely attached to home and mom? And why is the school district still trying to take away the only service that has helped my child? If I could redo the transition of my child into school I would. It remains my only regret. I am convinced that if my child had 2 months of home-based ABA prior to entering school the first four months of school would not have been time wasted. If I knew then what I know now I would have worried less about the clock ticking and more about spending quality time with my children. I would have spent more time listening to my motherís intuition and less time listening to so-called professionals trying to make me believe I didnít even know my own child. Listen to your own thoughts. I have found more often than not that when I ignore those little nagging thoughts that I live to regret it. The bottom line is I am the expert on my child.

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