Sunday, April 09, 2006

A Different Kind of Normal

I just read a story in a new parenting magazine called Wondertime. The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.

The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.

The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child:
read more
The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.

Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.

Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."

That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."

6 Comments:

Blogger Moreena said...

Thanks for the pointer.

And spot on, too.

9:46 PM  
Blogger Tara Marie said...

I will try to find the article as it looks like a good read and keeper for 'future' files.

10:18 PM  
Blogger Rob said...

The whole article is excellent. The author follows them to the party and go through the whole thing with them. It's both uplifting and sad.

I exchanged email with the author today, and she was very very cool.

11:41 PM  
Blogger The Imperfect Christian said...

I read about this on your blog and commented there. I just can't imagine a child NOT being invited because they're "different". I know I will face the reality of such events one day and I will try to do my best with it, but it just isn't fair. I know I did not raise my "typical" child to treat others that way and I hope he holds onto that throughout the course of his life.

He'll need it when he has to advocate for his sisters.

10:00 PM  
Blogger Mete said...

Saw this on your site too, Rob. It breaks my heart. I go back and forth between being sad that my son's severe disabilities prevent him from enjoying his childhood, and feeling relieved that his neurological issues prevent him from realizing what he's missing.

pajama mama, I'm not surprised that the invites will end. This happens even with "typical" children... in the early years, every kid in the class is invited, out of courtesy. But it seems as they reach a certain age, only the "in" friends are included. A special needs child may still get invited to parties as s/he grows up is, but I can imagine many remain on the outskirts. (I had a hard enough time getting invitations once the tween years hit, and my only issues were being shy and geeky.)

9:55 PM  
Anonymous Anonymous said...

The web site is up -- you'll find part 1 and 2 of the series online...

Part 2:
http://wondertime.go.com/learning/article/jimmy-foard-part2/

Part 1:
http://wondertime.go.com/learning/article/jimmy-foard/

11:34 PM  

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