Our Special Needs Life: It Doesn’t Suck

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It’s Sunday afternoon and I am watching my son, Max, tool around in one of those gigantic electric kiddie cars. We’re at a family resort; Max is having the time of his life, and seeming like he might have a future as a race car driver.

Suddenly, another mom approaches me. “You look familiar,” she says.

“So do you!” I respond, and we figure out that we worked together years ago. A cousin of hers is hovering nearby; she works with children who have disabilities.

“Her son has cerebral palsy,” this woman tells her.

“Awwww,” says her cousin, and casts a pity-filled glance at Max.

I am a little astounded to get this reaction, especially from someone who works with kids who have disabilities. First off, my son is steering a car all on his own—damn impressive for a kid with CP. Max is also gleeful out there; he’s been squealing, he’s so happy.

Why the pity?

Max, who’s 8, has cerebral palsy because he had a stroke at birth. I have to explain this a lot: Yes, babies can have strokes. His caused significant brain damage. It’s the reason he has limited speech that’s hard to understand, and why he doesn’t have good control over his hands. Doctors told us he may never walk, along with all sorts of other gloomy predictions, but Max walks. He can ride a bike. He can run (especially when he is trying to get out of coming into the house for bedtime).

Max is one of the sunniest children in the history of children. He’s always grinning at something, and has a giggle that stays with you for hours. He may have his challenges because of the CP, but he enjoys life. He is happy. As I’ve written about before, Max isn’t defined by his CP.

He is not a child to be pitied, although we get The Pity Look all the time.

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Does he look like a child to be pitied?

Exactly.

I am not a mom to be pitied, either; I didn’t get a defective child. Max is no less perfect in my eyes than his 6-year-old sis, Sabrina, is because she has a stubborn streak and a bit of a temper. Sure, I have a lot on my hands—I work as a magazine editor, I blog daily over at Love That Max, I have therapy and doctor appointments up the wazoo—but all moms juggle. I am not an exceptional parent for mothering a kid with special needs, although I do smell pretty good.

I have an awesome husband, Dave, who does all he can for our kids. Our family has a nice life, the same as any other family, filled with fun, laughter, love and jokes about farts.

So please, do not pity me, or Max. Do not stare at my son as if he is this poor injured little bird. There is one thing you can do: Say “hi.”

I’m looking forward to sharing lots more here, and getting to know you. I do not claim to be the voice of all parents who have kids with special needs. I welcome differences of opinion, just don’t throw rotten tomatoes at your computer screen.

I also hope that parents of so-called typical kids will jump in here, along with parents of kids with special needs—there is so much we can learn from each other. George Clooney, you are also welcome here too.

Take a sec to introduce yourself, please! George? George?

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  1. by Kristy

    On July 1, 2011 at 1:55 pm

    This a great! My favorite line was He may have challenges because of his CP but he is not defined by it. That is so true!! My daughter is 6 and she has Spina Bifida. She is the most awesome person I know! I have gotten the pity look too, and It can be discouraging..they just don’t know what they’re missing!

  2. by Paul

    On July 2, 2011 at 11:23 pm

    That poor child. He must be miserable, born into a life he didn’t ask for. What a wretched existence.

    *looks at picture*

    Scratch that. Special needs kids may be stuck under a label (debatable, but that’s a whole ‘nother rant), but they’re rarely – if ever – DEFINED by that label. My little Namine is one, and Max is for darn sure another. Cheerful without apology, defying doctors’ predictions – they make our lives brighter, better places.

    Pity Looks! Who needs ‘em?

    (P.S. In case you couldn’t tell, that first part was sarcasm.)

  3. by Heather

    On July 5, 2011 at 3:25 pm

    Love your first two posts, Ellen! Welcome to the Parents blogger crew:)

  4. by Berit Thorkelson

    On July 6, 2011 at 12:25 pm

    Love the photo of Max in the racecar. I’m looking forward to your insights, Ellen!

  5. by Barefoot Liz

    On July 8, 2011 at 7:22 am

    Great post! Pitying looks are bad enough the disgusted looks are the ones that drive me over the edge.

  6. by nicole Dorsey

    On July 8, 2011 at 1:27 pm

    Ellen,

    In my adoption world, I swear by this site which overlaps both of our worlds! https://www.facebook.com/RainbowKids

    Have you ever read these amazing success stories? Such a fan!