Friday, July 23, 2010

Labeling

Don’t label him.

That’s another one of those comments I’ve heard a lot over the years.

Listen to it. When you hear it as often as I have and take some time to fully consider it as I have been lately, it doesn’t sound like advice. It sounds like caution. It takes the form of a directive. And there were times, when I heard it said to me, that it almost sounded like threat — as if well-meaning people were warning me not to “do this” to him.

And so I didn’t. I was afraid to. Afterall, as my pediatrician, the school social worker and my family repeatedly insisted, my son was fine. When he is happy, he is elated. He loves to engage people. He hugs everyone. His smile warms a room. He’s incredibly intelligent. And while there are times when he is obviously frustrated and clearly struggles socially, to casual and at times even to professional observers, there just didn’t seem to be anything diagnosable about him.

For eight years, I heeded this direction, or at least, I wavered. I did not use the A-word to describe him. I used plenty of other words. At the beginning of each school year, I’d seek out his teacher for a face-to-face conversation and try to prepare her the best I could. I’d say my son is a real individual. He’s high-spirited. He’s sensitive. He’s quirky. Understand? And I'd hold her eye-contact as long as I could for added emphasis, so she’d see this was a plea, please hear what I was conveying.

I did not confess what I was growing to know — that the cluster of seemingly unrelated behaviors, sensitivities and symptoms I had struggled to understand were consistently leading me to resources and websites that deal with Autism. We had accepted Sensory Integration Disorder. I had long ago adjusted his diet and he was thriving on it. He no longer qualified for speech, OT or other services at school. And he was doing fine academically.

So why would I label him now?

Because labels came anyway. Not from me. And not just from the innocent immaturity of children, which of course was a source of plenty. But they also came from adults, from friends, even from the staff at his school. I understood of course how frustrating the situations they encountered could be. I understood they were seeking some sort of way to resolve how they were feeling, that they be grasping with a way to explain their unusual engagement with this strangely quirky child. But none of them would look at him with the compassion that I did ... that he deserved.

He was called inappropriate, disruptive, weird and a freak.

So, I did it. I labeled him. I finally secured a diagnosis of PDD-NOS. I insisted he be reinstated to receive services at school (he attended a special pre-school for a language delay and was recognized as having "sensory issues" but was dropped from services after Kindergarten) that will begin next school year. And I have already begun to tell his teachers, coaches, my friends, that he is on the Autism Spectrum. This label gives me the authority I need to help him, gives his teachers access to resources and information and for him, ensures the compassion and social support that is so vital if he is to successfully navigate his mainstream school. And so far this label has worked marvelously for him. I have high hopes that next year, while he may be pointed out as being autistic, he won’t be so easily socially ostracized again.

This blog is part of my label acceptance. I’m slowly coming out with it. But just to explain how shy I’ve been, you should know I am employing pseudonyms. My name is Elizabeth but nobody calls me Liz. C.S. stands for Charming Son and DeDe for Darling Daughter. Still, my stories here are real and I am seeking, not only silver linings but those wonderful souls who are the truly understanding sort. And I can only hope that sharing this will help others like the blogs I’ve discovered and read helped and continue to help me.

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