25 March, 2011

Label Me Capable

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did  receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed",  I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.


*****
A version of this post was featured in the Life section of Salon.com
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