Fredericksburg Families

Amy Umble writes about family issues and kid-friendly events.

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The ‘Real World’ of autism

Dear Parenting Magazine,

You showed up out of the blue when I was halfway through a difficult pregnancy–you seemed to know exactly how I felt, exhausted and nauseated. I didn’t really use your suggestions though. “Take some time for yourself” isn’t really practical advice to a mom with two teens–one with severe autism–and a full-time job. But I get that you were trying. Then, your suggestions veered way off course. I mean, a $2,000 rug for the baby’s nursery? A babymoon?

So I put you aside. But you beckoned me back–with your advice on how to get a baby to sleep. My new daughter wanted to wake up every hour, so I appreciated your tips on bedtime routines and noise machines.

And then this month, you arrived with the question “What is it like to hear ‘Your son has autism’?” blazoned across your cover. I was intrigued. Although, honestly, a better question would be “What is it like to not hear…” That’s an experience I haven’t had yet.

I turned the page to the autism article. It started off badly, “For those of you who don’t know me, I’m one of the original cast members of Bravo’s hit reality television series The Real Housewives of New Jersey.”

Um, what? First of all, I hope that I’m not in an extremely small minority of people who can’t name the stars of any “Real Housewives” show. Secondly, this is how you want to show the world the reality of autism?

Jacqueline Laurita writes, “Our family faces many challenges, just like any other family. Right now, one of our greatest happens to be helping Nicholas recover from autism—because I believe it’s possible.”

I don’t want to belittle her experiences. I strongly believe that parents of kids with autism need to stick together. And one of the more frustrating parts of the autism world has been the deep divisions of parents, who are quick to judge each other and belittle each other. I remember once being at an autism support group meeting where some parents questioned whether parents of kids with high-functioning autism really knew what it was like to raise a kid with autism. I’ve seen message boards resemble war games over the special diets and vitamins some families use. And the whole recovery debate can get more divisive than last year’s presidential election.

However, I do question using Laurita as the “reality” of autism. The same day that I received the latest issue of Parenting, I took my oldest son, whose autism is severe, to the grocery store. We waited in line, while he made babbling noises as loudly as he could. It felt like every eye was on us. I glanced at the tabloid rack and saw a fitness magazine with a half-naked Jenny McCarthy on the cover. For years, the media used McCarthy as the poster child for autism mom, even though her son maybe never had the disorder. It didn’t seem harmful. But often when I would mention my son, someone would say, “Have you heard? Jenny McCarthy has the cure for that.” I sometimes replied, “Oh, yes, but I really enjoy changing the diapers of my teenager, so I figured I’d just keep going down this autism road.” The truth is that I tried McCarthy’s “cure” diet when she was still on MTV or Playboy or whatever she was doing before she became the “real-life” face of autism.

So here’s an idea: How about including some actual, reality autism stories? From parents whose reality with autism means there isn’t time, money or energy for a personal trainer–or even the occasional visit to the Y. Stories about what it’s like when that “recovery” doesn’t come through–and you’re toilet-training your 15-year old and wondering if he should go to residential school. About what it’s like to lose sleep every single night because you have no idea what the future holds for your kids. About juggling a full-time job and meetings with teachers, specialists and social workers. About how you find a “babysitter” for a teenager. About cleaning poop off of your son, his pajamas, his bedding, his mattress, his floor, his walls and his heating vent cover every morning for three years. About losing your social life. And vacations. And dates with your husband.

Of course, you should also include stories about being the only mom of a teenage boy who still gives goodbye kisses before he goes to school. Of the stronger bonds forged by having to bathe, dress and change your teenager.  Of the incredible people you meet in the autism world.