Kids Like These

Recently “Jay”, the daughter of a friend, contacted me seeking help with an assignment she has at her university. Jay is studying to be a special ed teacher (YAY!). Her assignment is to take the facts of a case study of a child and prepare a social outing that will work in light of that child’s disabilities. That is a wonderful assignment. And just by contacting a real family, Jay is already ahead of the game.
Of course, she thought of us because the child in her study has CP (cerebral palsy) and uses a dynavox (the same communication device that Maggie uses). She gave me information about this child that she thought was revealing, but really does not tell you anything. I am willing to bet the professor did that on purpose. A diagnosis of CP in and of itself means NOTHING. It is such a wide label; it encompasses everything from a child that is slightly clumsy to one that is far more involved than Maggie is. Maggie is pretty severe on the scale, but there are plenty of kids whose motor impairment is more severe. Often people know someone with Cerebral palsy and assume everyone with that diagnosis looks that same. That is erroneous. It is as naïve as thinking that everyone with cancer looks the same.
I cautioned Jay to go by the person, and not by the diagnosis. She had to look for clues, not just labels, in the case study. The girl’s IQ was low and suggested the girl had limited cognitive skills. The raised a flag immediately. Who tested her and how did they score it? The girl could drive a power chair with her head and use a dynavox; based on those facts alone, she has a lot more going on cognitively than that IQ test would indicate. Jay’s interest was piqued. I suggested that her teacher might be laying traps that she was going to avoid just by calling us and getting a “reality check.”
I have no idea if the professor was as enlightened as I hope s/he is. However, I just have to believe that. As a parent of a child who has been defined by her diagnoses her whole life, I have to hope the next generation is smarter and more in tune with reality.
Another of my ten-thousand pet peeves is to hear Maggie or her peers described with the phrase: “KIDS LIKE THESE.” When a sentence starts with that phrase, the hair on the back of my neck stands up. I hear it all the time from smart people who should know better. People like doctors, and nurses, and teachers and more. Maggie is simply lumped in with other special ed kids or other kids who use wheelchairs, or other kids with trachs, or other kids who use communication devices, or whatever. Very very few fit all of those categories. Maggie, like every other child, is a unique individual. Dare I say, maybe a bit more unique, if that makes sense.
When these smart people use that “kids like these” phrase around me they get an exaggerated confused look from me along with a response like “girls?” or “kids like what?” Generally, that wakes them up and they focus on Maggie instead of her diagnosis. Sometimes they squirm a little bit. Sometimes I get funny looks, like maybe I do not realize that my daughter is disabled and they are going to burst my bubble. Then I just pity the fool.
However, with Jay and “students like these” getting “assignments like these” I know the tide will turn and the children who come after Maggie will be considered children first and disabled second.