A Moment in Time

by

Sam Bauman

The Special Education teacher was very excited that afternoon. She came bursting out of the school, wide-eyed over to my car to tell me, “Jason spoke a full sentence today!”

“That’s great,” I said. “What happened?”

“During circle time, Jason was on the floor and he said, ‘I want to get up.’

“I wonder why he said that.”

With unblemished pride, the teacher continued excitedly. “Well, we had him strapped to a chair and he was ready to get up.”

“Oh, and why was he strapped to a chair?”

“He kept falling over on the floor, so we decided to strap him in?”

What the teacher in Jason’s school had seen as a raging success that day had actually been yet another in a long series of school related failures for our family. Yes, Jason did share a complete sentence that day as he has in many other situations. He does bring to mind that humans who are put in situations that are perceived as dire (torture, being trapped) will at some point “talk.”

Had the school, once again, not failed to consult Jason’s family, they could have learned that Jason’s low muscle tone made it nearly impossible for him to sit on the floor without back support – certainly a less restrictive environment than being strapped to a chair.

We were outraged, but not surprised. The school system never bothered to understand the needs of our family, the learning style of our son. They did not take time to train their faculty on how to handle students in the Autism Spectrum (Aspergers Syndrome, Pervasive Developmental Disorder, Autism). We wondered how we would ever become full partners with the school. My wife, Terri, and I both had a long, successful history of working in close partnership with diverse peoples in a variety of situations and in the roles of team participant and team leader. We could not understand why we were shut out here – in this important area in the life of our family. If we could have avoided the stresses that came with our adventures in parenting, we might have understood.

God chose us to be the parents of three children, one with a significant developmental disability and two blessed with gifted intelligence. Many parents would agree that the worst kind of pain is not one’s own physical pain, but that of your child. Jason had five major surgeries for Clubfoot by the time he was eight years old. After those operations, he became highly sensitive to being bumped, to mild pain and to white noise (similar to that of the cast removal saw). Because of his physical and developmental challenges, he could sometimes become frustrated. When he did become frustrated, he would bite himself on the wrist. At other times, he would try to bite whoever else was around. The school made three recommendations.

Put Jason in a “Hannibal Lechter” bite prevention mask
Put Jason in a residential school and have him only home on the weekends
Kick Jason out of school and give him home teaching only

Terri hired a home-based behavioral therapist to help us design and implement a self-injury reduction plan. Within a few months of closely following the behavior plan, and the right combination of medication, Jason’s incidents of biting (while at home) went from 63 per day to three per day.

The school team was not impressed. As Jason’s parents, we were naturally incompetent. The school could have been part of a particularly effective school-parent team. Both Terri and I are licensed behavioral health professionals with more than forty years of combined experience in behavioral intervention. More importantly, and this is true for all parents, we ARE the experts and the original teacher for our children.

We could not agree to use the “Hannibal Lechter” type mask, nor could we agree to put Jason in a residential school. Jason was and is too much a part of our family. He loves playing with his sisters in his own way, singing and praying with us, having family meals, and just being part of the family. Jason was expelled from the school system and received ten hours a week of home teaching only for almost two years while the system sought a day school program. After two years of persistent advocacy (legitimized nagging), Jason entered a skills-based school for children with developmental disabilities. The school is a 75-minute bus ride from our home. Jason loves the bus ride and keeps his peers entertained with singing songs and telling the driver when to stop and go (courtesy of many readings of P.D. Eastman’s “Go Dog Go”).

We have laughed, cried and learned. How can we forget the time that Jason’s sister, Hannah, told the other kids at Chuck-e-Cheese to, “Be patient climbing up the tunnels behind my brother; he just had an operation.” Terri and I looked silly hugging and crying happy tears in the middle of the playroom at Chuck-e-Cheese knowing that we had done something right. How can we forget all of the times that Jason’s youngest sister, Molly, found a way to include Jason in her games?

We do have to wonder, though. Terri and I have loads of experience in behavior management and advocacy. We have extended family support. We have a great network of friends and we feel spiritually grounded. Even with all those assets, we are often overwhelmed by our special parenting responsibilities. What are other exceptional families doing to survive?

A final note from the column editor:

Since this original story was written by Jason’s father, Sam, and with the help of many family members and friends, Jason celebrated his Bar Mitzvah this year. His father describes him as, “a really happy young man!” Now, at the age of 14, Jason’s family wishes for him, “to continue to feel happy with some level of mastery in his life.” God gave Sam and Terri three beautiful children and, lucky for us, they continue to teach the world!

If you are interested in contributing to the Families Matter! column, please contact Carolyn Nava at cnava@air.org or call 202-295-6902. We look forward to hearing your story!