April 9, 2006

A Different Kind of Normal

Originally uploaded by Citizen Rob.
I forget who it was now (sorry!), but a few months ago someone pointed me to a new parenting magazine called Wondertime that contained a series of stories about a special needs family and how they cope with a variety of issues. I decide to give it a try, and the first issue finally arrived. Turns out the magazine only comes out a few times a year, so the issue I got was actually the premier issue.

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.

I am particularly interested in this series because in the next installment, Meryman will explore Jimmy's quest to find his own voice, through speech therapy and an augmentative alternative communication device, possibly one like Schuyler's Big Box of Words.

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.

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."


CJ said...

If ya'll lived here or we lived there, your daughter could come to all our birthday parties. I think as special needs parents we always worry about inclusion for the basic things most people tend to take for granted. Maybe some day people will see that different is not bad.

Anonymous said...

I would think that reading of a woman who is trying to impede her son's socialization instead of informing different parents about what her son needs (purposely arriving late, instead of stating that her son has trouble with the bouncy castle, for example) is an example of parenting you *wouldn't* want to hear about.

You and Julie have tried your damnedest to make sure Schulyer doesn't feel isolated and is around kids who need the same things she does, and this woman, from the parts of the article you've shown us, hasn't done that - no mention is made of her telling the other mothers that her son might need things set up differently on playdates, or anything like that. I just find it weird that you're not upset with this sort of victimization.

Robert Hudson said...

I don't see what she's doing as trying to impede it at all. The reality for special needs parents is that we can't control the environments our kids get into. Ask yourself, assuming the role of the parent of a neurotypical child, how you would react if every time you invited one particular child to a get-together, you had to make special accomodations for that child. You might not decide to exclude that child after a while, but I guarantee you there are a lot of parents, maybe even the majority of them, who would.

Autistic kids in particular deal with socialization issues that make parties with other kids a nightmare, both for the kid and the parents. For kids like that, the kind of bargain this mother makes, where she limits the time her child spends in social situations so that he doesn't lose his grip and freak out, is a necessary part of the socialization process.

Schuyler conforms better socially than an autistic child can. She adapts to her environment when she hits an obstacle, which is usually very difficult for austistic children to do. In the end, however, she will face the same kinds of exclusion dangers that other broken kids do. Schuyler is good at minimizing her "differentness", but the older she gets, the more of a struggle that become. Already, we see some of the social exclusion that this mother faces.

I am proud of this mother, both for making sure that her son faces his socialization issues and also for recognizing his limitations and adapting accordingly.

(Trisha, if you're out there, I hope you'll chime in.)

km said...

My 10 year old nephew, who is both autistic and has cerebral palsy, is a very popular boy. He still gets invited to parties even though he doesn't engage very much at all. I don't know why, but kids seem to love him, so my advice to you is not to worry too far ahead because Schuyler and her friends may surprise you. She may end up as one of the most popular kids in class. With that hair and that attitude, who could ignore her?

CameraDawktor said...

Oh, I can feel my tears coming...I am so sorry at the pain you must feel when you fear Schuyler is to be rejected. She is such a doll!! I am glad she is like the pied-piper to some children and I hope her having a following never stops!

Christopher said...

Your fierce commitment and love will sustain her. You will never give up. She will discover this and it will guide her.

Anonymous said...

I don't think I am qualified in any way to respond to the issues presented here...I have an 18 year old nephew afflicted with autism and pervasive personality disorder and have witnessed my sister-in-law experience the dread described in the article. And I have no answers.

On a much lighter note, I think it ROCKS that you indulge Schuyler's wishes -- red hair, purple hair, whatever she wants. I think you & Julie are the greatest.

Anonymous said...

As a mother of an 11 year old boy with autism, I am somewhat shocked at the idea that what the writer was describing is ‘victimization’. In my mind, the writer is, in fact, enabling her child to participate as much as he is able.
If we were to tell other parents we needed them to set things up a little differently on play dates, or for parties, our list would include:
No music. No running around. No playing games requiring touching, such as Tag. No party hats. No noisemakers. No yelling ‘Happy Birthday’. No food served at any temperature other than tepid, and while we’re at it, no meat, no dip, no pickles or anything the tiniest bit sour, no gelatin and no cream cheese.
Or, we can thank the parents and child for the invitation, and ask it’s okay if we come a little late, and if it’s okay if one of us stays with him to supervise, ‘just in case’. I would probably bring his own food, too.
If my son, who happens to be high-functioning, requires all those adaptations (and those are only the ones I can think of off the top of my head), can you imagine how many could be required for children whose disabilities are severe?
My son is mainstreamed in school, attends Cubs weekly, attends a Social Skills playgroup weekly and goes to swimming lessons weekly. We are not trying to impede his socialization, but rather to ensure that the socialization he gets is positive for both him, and other children. I suspect the same is true of the writer.

Anonymous said...

You all bring up valid points that I hadn't considered about informing other parents (and I freely admit that I have no children), but I had interpreted her choice to deliberately arrive late and lessen the time he spent with others as a bad thing (less time to make friends) rather than a good thing (making sure he doesn't get overwhelmed by all the activity).

Likewise, I realize I have interpreted one paragraph in particular completely differently that was probably intended: 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."

I read that as her purposefully intending for the invitations to stop to remove this stressor from her son's life, rather than her feeling sad about that eventuality and trying to make the most of her son's attendance while she can.

What does this say about my own internal biases? I'm really concerned about this.

trisha said...

dmfvd, thanks so much for your comment. My son is 5, and he has the pdd-nos. I have been trying to think of something to say, here, to help people like Christina maybe understand. But, man, there are so many things I didn't know where to start.

The sensory issues, alone...whew. That's a lot to cover. And no two autistic kids have the same sets of issues.

Would it be possible to email you, dmfvd?

Anonymous said...

I just wanted to say I appreciate your willingness to consider other points of view.
Trisha, of course we can email! I've sent you a message.
Rob, I've learned so much from you and your readers. Thank you for helping others understand what the parents of children with special needs, and the children themselves, live with every day - the good and the bad.
By the way, I am now the proud owner of two Red Stick Rambler CDs, so thanks for that, too.