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There is no end to this rope
SheSaid: Haddayr Copley-Woods on parenting a special needs child

There are days when I think I am completely unable to cope.

I suppose every parent comes to this realization at some point. That's when those who don't believe in spanking find themselves smacking a bottom, the ones who went through years of yoga connecting with their inner centeredness start screaming until their lungs hurt. Or, if you're lucky, it's the moment the kids have finally stopped whining for a drink of water or demanding another story and you can stumble downstairs and stare at the sink full of dirty dishes and pour yourself a large, stiff drink instead.

My most recent realization that I could not cope came last Tuesday when my son Arie's therapist sat my husband Jan and I down and firmly but gently presented the evidence that Arie not only has Tourette Syndrome (he was diagnosed last January), but also Asperger Disorder.

The diagnosis wasn't terribly surprising. I have several friends who are Aspies, and I have read about it. I pay close attention to my children, and I am smarter than your average bear.

But when it was confirmed by a professional, I mentally curled up into a tiny ball and started babbling. I was amazed to hear myself saying calmly: Yes, I'm not surprised; we were expecting something like this. I watched my hand patting my husband's knee consolingly. It's not like it's cancer, I said.

There are times (when Arie is flailing, shrieking, hissing and spitting in public because his sleeves have become slightly twisted inside of his coat) I wish I had a T-shirt for all who stare disapprovingly in my direction: "My child has Asperger's, Tourette's and Obsessive Compulsive Behaviors with just a dash of ADHD," it might read. Or, more simply and more to the point: "Fuck you."

I've been having a lot of these "fuck-you" moments lately, and in the strangest places: at work where a colleague talks about how his vacation was ruined, simply ruined, by the bad weather and all they could do was sit in the child-free cabin, reading and sleeping. On the phone with the parent of a neurotypical kid who, on a whim, let her stay up late to watch a movie. At parties where people tell me they've read about Asperger's and Tourette's and it isn't all that bad, really-or conversely, perhaps your son should be in a special school? Oh, how awful, I say, or: How nice for you, or: Yes, I've read that, or: No; kids like mine are mainstreamed. Instead of: Stop whining, or: Well bloody good for you.

Because I'm a Minnesotan. We don't say that to people.

Since news of Arie's additional diagnosis hit, an astonishing number of people have said: "I can't think of anyone who is better equipped to handle this-Arie is lucky to have parents like you."

This makes me laugh out loud. What do I look like from the outside, I wonder, besides a little too thin for Minnesota tastes, freckled and harried? I must look strong, flexible, tough, kind or perhaps creative.

But inside, I am none of those things. I am so tired of schlepping Arie from one appointment to the next that when they say to me brightly: "We have so many interventions that will help Arie and you're lucky to have a diagnosis at such an early age!" I want to wail: "He's already getting three interventions a week!" I feel helpless, stunned, exhausted, overwhelmed and incompetent most of the time.

But I can do one thing no one else can: I can love my son. Jan and I can stand there and talk to principals who rear backwards as if they've been bitten when we say "Tourette's," and we can love our son far, far more than others fear him. And we can hold up our weary hands to fight for him, or (and we have been enormously blessed in this regard) shake hands with people who want to help him almost as much as we do. We can learn from him and about him, and apologize when we lose our tempers, dispense hugs and kisses, and then we can put our heads down and slog ahead some more.

Why anyone thinks that we are uniquely suited for this task is beyond me-we are plain, ordinary parents. He is ours, we are his, and that will have to be enough for now.

Haddayr Copley-Woods is a mom and writer living in Powderhorn Park.

Asperger Disorder www.asperger.org
Tourette's Syndrome www.tsa-usa.org

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Reader Comments

Posted: Wednesday, July 18, 2007
Article comment by: Brian Manlove

Sounds like "Minnesota Nice." What they really mean to say is: Glad it's you, not me. Speaking as someone who grew up with a manic depressive mother who beat the shit out of me many times and was feeding me valium at 5 years old because I was too "spirited", the best thing you can do is LOVE THAT THERE YOUNG'UN, and everything will be OK. Brian M in TEXAS.

Posted: Friday, January 19, 2007
Article comment by: Nancy Hokkanen

Biomedical treatments are available to treat chemical toxicities and imbalances that unfortunately are still given psychological labels. Read "Children With Starving Brains" by Dr. Jacquelyn McCandless. Check out the Autism Research Institute website (http://www.autismwebsite.com/ari/treatment/treatment.htm). Give your child probiotics, cod liver oil, antioxidants, B vitamins. Test for allergies, strep (MELISA) and toxic heavy metals. Attend the AutismOne conference in Chicago this May. (www.AutismOne.org). Don't wait for disengaged theorists to catch up with what Dr. Jeffrey Bradstreet calls "a parent-driven revolution in medicine." There can be an end to this rope.

Posted: Tuesday, January 16, 2007
Article comment by: Nancy Hedin

You did it again! Great article, sobering honesty, and important message. I am one of the folks who doesn't know what to say sometimes and I probably chew my foot up to my knee. At the same time, I have a daughter with special needs and even though I would wish for her life to be easier at times and for my life to be easier at times, I could not love her more nor would I trade anything about her for something else. She is uniquely my beloved, Sophie. Like you and Jan, my partner and I can give her our best. It is a big job and I love it!

Posted: Thursday, January 11, 2007
Article comment by: El Smith

Thank you for your unflinching honesty. My son shares some of Arie's special needs and sometimes it is all you can do to just put one foot in front of another and do it all over again the next day. It is so important to talk about these challenges as building awareness helps break through the isolation so many of us dealing with (and loving) our kids fall prey to.

Posted: Thursday, January 11, 2007
Article comment by: Rob Reese

I can't think of anyone more uniquely suited to write about not being uniquely suited for a unique(ish) challenge. RR

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