The chaos and mania of parenting a child on the spectrum

Am I Giving my Child a Stigma?

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“If you keep saying that about your daughter, it’s going to create a stigma. And she might resent you for it,” a friend told me, after she had heard me make one of my customary jokes about my daughters “issues.” Something like, “My Crazy Daughter,” usually followed by nervous laughter meant to lighten the situation. She put a hand on my shoulder. “I hope I didn’t offend you by saying that. I just feel like it would be better for your daughter’s sake.” This friend must have seen the hurt on my face, though I had tried as best I could to smile and apologize and stammer that I knew, and that I was wrong, and I shouldn’t do it, but just couldn’t help myself.

I can see how she may have viewed these comments as highly insensitive to my daughter. I know she just couldn’t imagine uttering such negative things about one of her children. And that’s it, she can’t imagine. And she can’t understand that the offhand “crazy” comment is such a trivial, whitewash of what actually goes on during episodes with my daughter. If she could, she would understand that I am, in fact, protecting her. Even though she may have not seen the evidence, when one of my daughter’s “episodes” takes place in front of that same well-meaning friend, she will be judging me. And she will certainly not be singing my daughter’s praises.

I usually allude to her “delays” and “struggles,” with a degree of humor. Maybe it isn’t the best way. But when she is throwing herself down on the ground, yelling, “I need it, I want it, I need it, I want it,” for twenty minutes while people walk by gawking, you begin to develop coping mechanisms. Mine happens to be self-deprecation. I would appreciate the benefit of the doubt though, and that people could accept my lightness as diplomacy and not ignorance. I appreciate the pep talk, but this woman simply hasn’t seen my daughter crying hysterical and hiding underneath the table in pre-school because it was time to line up for art and she doesn’t understand where they are going—in the six month of school. Or the times she has repeatedly unclicked herself from her seatbelt on major highways because it is choking her, or thrown a sippy cup at my head while I am driving, or when she has thrown herself down in the road in front of oncoming traffic when her balloon flew away—and stayed there having a tantrum for fifteen minutes. This woman doesn’t see that my kindergartener is yet to be potty trained but lets out primal, anguish screams at the feel of pull ups, underwear, and most pants, for that matter. She wasn’t privy to my daughter throwing herself onto the ground every recess, yelling, “They are running away from me, they are running away from me,” every single day, when the kids were happily let out for recess. And she wasn’t informed that when my daughter was finally approved for occupational therapy at school, she spent the rest of the year just trying to form a circle without tearing the paper. Or that she has become so frustrated at a classmate for winning a game or knowing how to count, she has scratched them until they bleed. Some things I actually keep to myself.

Like the pain and fear I have every day that she has hurt someone or herself. That she has soiled her clothes in front of her classmates. That she spent a day feeling frightened and frustrated. That is entirely my fault. That I drank coffee when I was pregnant. That I didn’t take enough pre-natal vitamins. That maybe I wasn’t meant to be a mother. I usually try to keep that to myself.

I hold my breath. I suck down as many fears as I can. I try to keep her included. I follow all the mother’s to the playground to help her fit in, and I watch her clumsily, painfully try to coordinate her limbs and follow the movements of the other children. I listen to them laugh about overachievers and helicopter moms, and make jokes about kids that will fail kindergarten. Even though mine, is “failing kindergarten.” And sometimes, to cover her trips, and her falls, and her outbursts, and so you won’t

have to know the pain and the anger and the depth of our problems, I say, “Oh, she’s so klutzy. Or “Oh, mine gets a little crazy.”  I say it, for her sake.



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