Moment of Truth

4 Sep

This article was originally published in the Dallas Morning News in 2006.

What’s the greatest challenge of having a daughter with autism? Telling people about it.

That’s an exaggeration, but not by much. Paige, now 10, was diagnosed with a moderate form of the disorder six years ago. She is a happy, loving, active, funny, hardworking, mischievous kid who looks like any other pre-teen and exhibits none of the stereotypical characteristics associated with autism. Paige makes eye contact, doesn’t hurt herself on purpose and gives us an abundance of smiles each day.

It’s when my daughter opens her mouth that her disability becomes apparent. She has a vocabulary of two dozen words, some of which only “Team Paige” (her teachers, therapists and family) can understand.

Most of the time, she’s content making an assortment of sounds. As we stroll through the mall, Paige may let out a piercing yodel, which never fails to draw a baffled glance or two. The raised eyebrows don’t bother me. Explaining to someone that she has autism is another story.

In truth, I have yet to spell out our situation to some of my oldest friends.

In Christmas cards and occasional emails, I have mentioned that Paige competes in the Special Olympics and that she receives after-school tutoring at home. But I fall short of full disclosure, as if hoping that my pal in Australia or a former colleague in New York will somehow simply find out.

I want my friends to know but hate the thought of telling them, especially after so much time has lapsed. It’s the same phenomenon as not knowing someone’s name long after I should. Do I take the easy out and go on faking it? Avoidance has the added benefit of allowing me to keep those difficult days, when the diagnosis was fresh as a new wound, safely in the past.

So why didn’t I just say something back in the late ‘90s after months of testing led to the conclusion that Paige has autism? That I can explain. Reeling from shock and consumed with sadness, I couldn’t talk back then to my husband about it, let alone brief a buddy from high school.  My emotions ranged from utter disbelief and denial to less-than-flattering riffs on “What will they think?”

Over time I have grown to accept and appreciate our situation, and now I cannot imagine adoring or enjoying my daughter any more than I do. You might think, then, that the notion of revealing all this to someone new in my life wouldn’t make my mouth go dry. Wrong! I find myself dreading the reactions, kind or comical as they may be.

Not long ago, I was sitting in a paint-your-own-pottery studio, struggling to freehand my daughter’s name on a toothbrush holder. After falling into conversation with the shop owner, I mentioned the autism in the context of how Paige’s progress had exceeded our expectations. The poor woman’s eyes puddled with tears.

“It’s really OK,” I consoled her. “She’s doing great.”

The owner made a hasty retreat. I pictured her sitting beside the kiln, sobbing into her sleeve.

Admittedly, most responses are far more upbeat. With one in 166 children currently diagnosed with some form of autism, nearly everyone knows a family facing the effects of the disorder. And while disclosing the truth still pushes the boundaries of my comfort zone, I find myself more and more willing to take on the role of autism ambassador of sorts. I want people to know that though my daughter’s disability is a life sentence, it’s no death sentence. Paige leads a rich and joyful life—as do her parents.

And that’s worth talking about.

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2 Responses to “Moment of Truth”

  1. robin September 9, 2010 at 3:49 am #

    why on earth would the woman start crying? i dont get it.

  2. Lisa Martin September 9, 2010 at 1:53 pm #

    Seriously! I still get that sometimes–people who look absolutely devastated when I mention I have a disabled daughter. And I’m not telling them in anything but a matter-of-fact way–like Paige has blue eyes or she likes the Jonas Brothers. I think it’s difficult for people to believe that we deal with this day in and day out. (My husband’s colleagues at work “marvel” at us, which bugs me. For one thing, it’s not like we have another option. For another thing, we have plenty of challenges with our neurotypical 4-year-old son!) I hope that my small contribution to society is to let everyone know it’s really okay–Paige is okay, the rest of us are, too.

    Thank you!!
    Lisa

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