Thursday, November 23, 2006

The Label Quandry

This week has been a lot of ups and downs. Mostly downs. Jake was incredibly upset about an area of his report card and so we decided that for him to voice his opinion (respectfully) to his teacher would be a learning experience. I thought it would give him valuable self advocating experience. That he and the teacher would work it out.

How could I be so wrong?

I obviously pushed Jake into something he wasn't ready for. We talked about what he wanted to say, we practiced over the weekend. The moment came, and Jake immediately shut down. He curled up and refused to talk, instead begging to be allowed from the room to run for cover. There was no talking to him, especially when his teacher was pointing out that he did, in fact, need to take some responsibility for his actions. Which I completely agree with on some level.

On the other hand, imagine this....

-the lights in the room are so bright it hurts your eyes
-the noise of every chair, every fan, every kid whispering and shuffling paper is like an airplane roar in your ear
-the constant movement of people around you makes you dizzy and confused
-trying to write the answers on the page is the equivalent to copying the complete Bible in one sitting
-the smells of other kid's lunches is so strong that it makes you want to vomit
-in all of this, you are asked to pay attention
-you're also asked to 'listen' and follow instructions but you miss them because of the other distractions
-you are chided for 'not listening' and told you 'aren't trying' and that the instructions won't be repeated
-you are also asked to pay attention to material that you already know
-then you're chided for being 'off task' when you doodle while you listen (although the doodling makes you forget about the constant movement and makes you feel grounded)
-you are chided for being irritable by the end of the day.

This is what school is like for my child with Sensory Processing Disorder, Learning Disabilities, and who is highly gifted. His response to low grade for neatness (which somehow equals pride in his work)?

"I'm just trying to get through the day and you're worried about me being neat? Are you kidding?"

I really don't understand how, with the information that is out there, school systems can be so rigid in their expectations of children. How the very grading of behaviors such as neatness, organization, and pride in one's work actually puts these kids at an instant disadvantage to their peers. The low grades that they are sure to receive only serve to discourage them further and continue the cycle of school hatred, even in the presence of high marks in their academic subject areas. He's right-just trying to get through a day like that and you'd see me being a total raging lunatic by the end. Actually, considering all that he's doing amazingly well.

Why don't they get it? Why does this system demand that kids fall into line with a completely antiquated set of criteria?

They always want a label.

He already has an alphabet soup of labels, but often people want a specific one that will garner funding for the district. A label that can stick him in a neat little box and explain his behavior in a way they understand. They don't understand him now, and while he has 3 or 4 labels already, none procure funding nor explain his behavior so neatly. Of course, I can explain his behavior perfectly and point them to writings about Sensory Processing Disorder or Giftedness. However, neither is as popular or well known, and both are horribly misunderstood. There is a lot of ignorance out there.

The labels that have been suggested over the years have always been for disorders that I know he doesn't have. And while people have said to me in the past, "Oh, but it will serve him better in the long run", what they don't understand is that it may serve him better in a year or so while he is in their classroom, but in the long run it won't. When he's an adult people will know. He'll be stereotyped and again shoved into a neat little package that isn't who he is. They want the label to explain him, define him, make it better for them, not him. They want the label to look at so when his behavior is at all difficult, they have something familiar to explain it. A security blanket of sorts, for the adults in his life. Since when were labels applied to appease the adults instead of helping the child?

What they understand the least, however, is that by allowing that label to be slapped onto him, my only child, I would have to tell him. Gifted children miss nothing. I'd have to look my son in the eyes-the eyes that see me as his rescuer, his rock, his unwavering support and tell him that I allowed him to be labeled with something I wholeheartedly don't believe he has. My disbelief doesn't come from denial. I have moved past the grief that comes with a diagnosis years ago. Besides my own experience as a paraprofessional with special needs kids for 14 years, I have consulted with professionals who have in fact, agreed with me. I've read countless books. I have become the expert in my child's disabilities and I can honestly say without hesitation that I won't agree to have him labeled with something I, and many others, so strongly believe he doesn't have. There are few times in my life that I have been so profoundly sure of something that despite the risks and personal cost, I knew it was the answer. The road to take. The time in your life when the decision really counts and you know what you have to do no matter what.

I won't do it. I can't do it. God help me-that school system be damned, whatever we have to face in the future, I just. can't. do. it.

Edited to add: Many gifted children are often misdiagnosed with disorders such as ADHD and Autism. Through 6 years and three school districts, many teachers had insisted that Jake had various disorders, even though testing had suggested otherwise. At the time that I wrote this, Jake's school was asking us to have him tested yet again, at Children's Hospital. My greatest fear was that he would be misdiagnosed and have a label applied that I whole-heartedly didn't believe in. We were at the end of our rope, and, not trusting anyone at that point, we had no faith left in the process. In the end, if only to have undeniable proof that he didn't have these disorders, we went ahead with the testing.

The results were profound; Jake not only didn't have the disorders that the schools had suspected, but we had been right all along. This time, the label was exactly right. The doctor even praised us in his report, saying that as parents we had gone to extraordinary lengths to give Jake what he needed to develop; a far cry from the intense criticism that schools had leveled at us in the past.

My only regret is that we spent so much time and energy fighting the labels that unqualified people kept shoving at us, that it took 11 years to find the right one. The right label makes all the difference.

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