May 25, 2022 | Rome, Italy

Changed by a site

By | 2018-03-21T18:48:22+01:00 March 12th, 2012|Lifestyle Archive|
Mother and child walking in New York City, 1912.
M

y mother gave me a book for Christmas called “Changed by a Child.” It’s basically companion notes for parents raising special needs children. I wanted to say “F$#* you” but decided on “Thank you” instead. I packed it away and saw no need to open it. Until last week.

I’d been holding out on labeling my son as a special needs child because, quite frankly, I was hoping, praying and obsessively thinking he would grow out of his developmental delays. But even as he progresses, it’s clear he’s different. Or special.

To me, “special” once conjured up images of extraordinary kids: the six-year-old ice skater who could land a triple Lutz; the four-year-old boy who could make crêpe suzettes; the 12-year-old with perfect SAT scores and early admission to MIT. So when I thought of having a special kid I wanted mine to be that kind of special. (Besides, I really like crêpes.)

Though I couldn’t love my son more if he were a genius or a crêpe, no one actively seeks to have an impaired child. I was no different. But I have one.

So I opened the damned book. And I cried like a wounded animal. I was mad and sad. Guilt, resentment, rage, grief all washed over me. I cried for him. I cried for my younger son. I cried for my husband. Selfishly, I cried for me.

I always thought that only really special women got special kids. You know the kind. They have stronger faith than mine. Deeper patience. Sweeter sweetness. (And really good bone structure; what’s that about?)

I wasn’t the kind of girl destined to get this kind of kid. This kind needs that woman. I have an Irish temper, a lack of faith, and a weak chin.

“He is so lucky to have you,” my mother said. “You can do this!”

“I know I can do it,” I replied, exhausted. “But I don’t want to be my son’s therapist, teacher and advocate. I just want to be his mother.”

Ashamed of another pity party, I began browsing the book. Raising a special needs child, it said, will always be “like riding and emotional roller coaster.” The sadness will never subside just as the unexpected joys will never cease. It also gave a small glimpse into support groups.

My own therapist had encouraged me to seek group dynamics or even start my own group. I approached two mothers at the therapeutic center we attend regularly to find out if they wanted to start meeting on a regular basis to talk about our experiences. They thanked me but said they’d already been offered support by the center, a service provide by the Italian public health system.

We pay out of pocket while on a state waiting list (we’ve been on it for 18 months so far) and never got the support option. Private clients don’t get priority. So much for, “You get what you pay for.” The old adage didn’t apply in the old country. While my son got basic services, our family lacked the extra help it could use.

Shot down and a bit dejected, I consulted my good friend Google.

Google suggested I join another search engine’s support group for parents with developmentally delayed children. I tend to avoid online groups because more often than not members lack good grammar and ask idiotic questions, but I was tired of feeling isolated in Italy. I created an account and signed in. Just the effort gave me a new sense of levity. This, I thought, would be good for me.

I logged in ready to be embraced by my new online brethren. I then scrolled down the list of chat topics:

— Fun and funky pics from all over.

(Hmm?)

— Elephants are sexual creatures like us.

(Were these mammals also developmentally delayed?)

— Meet girls in your area.

(Was I developmentally delayed?)

Wait! This was a… porn group. My new support group was a ruse for an erotic chat room.

Incredible? Yes.

Unbelievable? No.

This kind of stuff just happens to me. And it never fails — thank heavens — to make me laugh. So I cackled like a wild animal. I laughed so hard I cried. It felt visceral and good and right. I guess good porn can do that.

Then I cracked open the book again to find a section on humor. I thought to myself: “I may not have the patience of a saint or a strong jaw line, but I have a hell of a sense of humor and I love my kid more than crêpes.”

So my special boy and me will be together on this roller coaster ride for a long time. We’ll cry. We’ll laugh. We’ll receive three illicit mails per day — until I can figure out how the bejesus to cancel my “support group” account.

About the Author:

Kissy Dugan's "Parenthood" column ran from 2007 through 2016.

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