Different, Not Less

"You just don't know what a blessing that boy is to so many people--a pure blessing,"  Mrs. Browning gushed as she spoke of my son, her former student.  Mrs. Browning is an aide for a class for children with exceptional needs in Mississippi where we used to live.  She took care of my D-man, day in and day out, for two years and showered him with love.  

She took him to ROTC each day where he clapped in answer to roll call and the other night she let me know that they still called out D's name and the entire unit clapped when his name is called.  Chief Thorman said that they keep him on roll to honor the D-man. 

A classmate who is also a cadet in the ROTC program said when he saw D's picture on Chief's desk:  "I miss D.  Hi D. D is a child of God."

 Now we are in a new state and at a new school.  How can I tell them about my child whose test scores are so low that expectations of him reading or speaking are outlandish?  How can I say that he is special in a good way if you know him well enough to read his face. . .if you only knew his sounds enough to understand his pidgin? 

I am trying to psych myself up for the IEP meeting so that I will be prepared to do just that.  To help them understand D so that they can educate him (or he can educate them, whatever the case may be).  I know he educates me daily--testing the care of my speech when speaking of someone in that person's presence, testing my patience when I don't understand his refusal to sit on the toilet, testing my sensitivity when I have to remind myself that often he disobeys because he can't understand, testing my compassion when I attempt a conversation and I answer for him instead of waiting for him to tell me in his way.

In addition to what seems a herculean task, I am daunted by my encounter the first school day with the principal.  When we visited a severe-profound class where most of the children faced major challenges, the principal quips,"I can see why this class choice would upset you.  Thinking that your son belonged with these kind of children.  They can't do much, anything really, but you gotta put them SOMEwhere."

The principal of a school exclusively for children with exceptional needs having that kind of attitude toward her students. . .I just don't know what to say.  But I do know this.  If the class where D is now is not the BEST place for him, then I will withdraw him from the school and fight the system for a more appropriate placement.  Yes, I do have to put him somewhere, but I am NOT going to put him just anywhere.

Labels

I say I don't like labels, but I should say my views on them are ambivalent at best. I went shopping for my birthday and was proud to say that I spent my money on clothes at Ann Taylor Loft. I am a jazz enthusiast and make it clear that soft jazz is not really jazz at all. Labels grant status. Labels distinguish the good from the mediocre from the downright bad. Think about wine: how carefully are those labels designed? Playful, serious, elegant, kitschy, robust: the label communicates the price, body, and bouquet of the wine.
But what about labeling people? We can get in trouble with labeling ethnicity and disability. It's much safer to label people politically. Usually folks don't mind being thought liberal or conservative. Religious views are another label most will own up to without rancor: Christian, Buddhist, Atheist. The trick is when one person's Christian looks more like another's Agnostic. But that's a topic for another day.
Back to the subject on my mind, labeling ability. When I was in school, I was tagged gifted. What that meant then I didn't really know, nor do I know now that I am all grown up. But I knew that school was easier for me than most and that there were some in my class who were what we labeled: slow. Today, I think the correct label is LD. What was the point of those labels? Not simply to indicate the speed with which one learned, but to better teach the child, right? So maybe those labels were somewhat useful.
Mentally retarded. How's that for a label? It's not politically correct to say that one. I don't see how it's a very useful one either. At least it hasn't been in my experience. It means that a child doesn't get speech therapy because it would be pointless. It means that a child doesn't get exposed to reading instruction as it would be fruitless. It means that a child doesn't get to interact with nondisabled peers because it would be distracting. It means that a child gets very limited amounts of occupational and physical therapy because the brain can only do what the brain is going to do. It won't train. It won't grow. It won't develop normally and any attempts to instruct that child will be futile. I haven't read the research to back these views, but it must exist because that is how children with mental retardation are treated in school systems and in the medical community today.
When my son was younger, I preferred the label: developmentally delayed. What it communicated is that the child would learn eventually, but learning would occur more slowly than the average. Now that he is over age nine, the federal government won't allow that label. But hey, my complaint is not with the federal government. They are willing to do what few people are. Provide care and financial help to families affected by labels. Sometimes, our government is the only advocate for people with disabilities.
Yes, some labels are desirable. Designer clothes, high-end electronics and fancy cookware need labels to confer status. But labeling people is something I'd like to change. And I don't mean in the politically correct way of not calling a spade, a spade, but in the more humane way of looking past the label, peeling it off, to find the individual hidden beneath.