by Polly Medlicott and Chris Mueller-Medlicott
What my son Christian and I want to tell the world, in hopes we might save some other kids, is his own story because Chris's silence nearly caused him to be lost.
As a young child with cerebral palsy who couldn't talk and couldn't manipulate things with his hands, Chris never got past nine months old on the developmental checklists. At his first big university-center evaluation at age two-and-a-half, a communication system and power wheelchair were not even mentioned as possibilities. The team's goal was to get Mom (that's what they called me) to accept the reality that my son had severe cognitive disabilities so that I would not continue to be in denial.
The obvious idea—that Chris, at the same age when other kids were busy talking and walking, needed alternative means to walk and talk—did not come up. Later, when Chris was seven and was evaluated for augmentative communication by hospital therapists, they strongly implied that my son was not in the tiny, elite category of “kids we know are very smart but they're trapped inside their physically handicapped bodies.”
They assumed that because Chris could not respond as expected to a command, did not act normal, he “did not have knowledge of cause and effect,” and therefore could not make use of a communication system. It didn't occur to any of us to try to find out what he could understand, aside from what he could express.
So this was Christian's situation: he understood perfectly well everything that was going on, but he was treated and spoken to as if he didn't understand anything at all. At his school, he was in a separate class where none of the kids could talk or move around, and they spent all their time undergoing therapy and getting changed or fed.
CHRIS: The effect on me was damn frightening. Got me terrified of uneducated popular opinion.
What would you do in his situation? What would anyone do? Being frustrated and angry doesn't get you anywhere. You can't throw things or go on a rampage. Since you can't express preferences, you are presumed not to have them. You become passive. Gradually, you withdraw even further, until finally you stop trying, stop responding, stop looking at people.
When Chris did not make eye contact, this was further proof that he had a very low IQ, even though they had stopped testing him by then.
The only computer software he was exposed to was for “cause & effect training” at a lower than preschool level. Later an “outreach” program at the regional institution set out to determine what type of stimulus would be most motivating—vibrating toys, lights, sounds, smells or Lik'm'Aid powder—so he could be taught cause and effect. Not surprisingly, it didn't work for Chris, who was eleven and almost unreachable by this time.
When Chris was fourteen, I read Rosemary Crossley's book, Speechless. I was struck by the simple, pure truth that although speech is a physically fragile thing which can be destroyed by a lack of oxygen at birth or a stroke, language—the knowledge and understanding of it—is almost indestructible, inherently part of being human.
I realized, in a flash of mental lightning, that Chris had been dislabeled as profoundly mentally retarded because he was unable to communicate, surrounded by low expectations, and stuck in severely retarded environments. His response was to shut down and opt out.
When Chris was fifteen, we went to Syracuse, to the Facilitated Communication Institute, where we learned that he could spell out words. This marked the end of the “severe/profound” era of his life—for us, that is; for the experts, it never ends—and the beginning of his attempt to chip his way out of the thick, passive shell in which he is trapped.
It is slow, hard, painful work, but Chris is motivated—highly motivated by his hope that in the next few months, after three and a half years of struggle to get it approved by Medicaid, he will be able to drive his own power chair. Talk about cause and effect! And finally, at age eighteen, he has escaped from special ed and takes regular classes at his neighborhood high school.
CHRIS: Now tumultuous test trying monumental trying typing my words.
What my son Chris and I want to scream to the world is this: How can professionals not understand that when they don't give a kid a way to communicate and the tools to do what other kids his age are doing, he will become deeply depressed and stop trying?
Once he gives up inside, he will look even more “retarded” on the outside, even if, like all kids, he is really smart. Can't you see that you destroy a life when you decide a kid doesn't need a communication system, based on the fact that he doesn't communicate?
Take a look into those self-contained severe/profound special ed classrooms and see all the kids who have given up trying. See them in their wheelchairs strapped down, belted in, tilted back, drugged out. Keep in mind that they cannot say a single thing about it. Not a word.
Apparently it's okay to shut kids down like that if someone is convinced the kid is profoundly mentally retarded. But think for a minute. What if there is no such thing as mental retardation?
What if, like Chris, they're using non-behavior to say, “No, No, NO !” to being condemned and segregated as subhumans?
Do you hear what we're saying?