Giving In To A Child With Disabilities

Ellen Seidman's nine-year-old son Max likes to have things his way. He went through a Cars 2 phase, wherein he would watch that video -- never the original, only the sequel -- over and over and over again. That was followed by the spaghetti with tomato sauce phase, when that is all he would eat -- including for breakfast -- and insisted that everyone call him "Max eats spaghetti sauce."

His parents are particularly relieved that he is over his car wash phase, when he used to demand that the car be sent through, sometimes twice in a row. "We had the cleanest car in the 'hood," his mother says.

Through all this, and to this day, Max loves purple. For nearly two years now he's insisted on such things as wearing purple clothes, eating from his own purple bowl (which he made at a pottery place, and then insisted on carrying with him everywhere), and sleeping on purple sheets.

Enough already, I hear you saying. Max's parents need to grow a backbone and stop letting their child run the house.

Don't be so harsh, I hear others responding. Kids do this. It's their way of controlling their world. This will pass.

Okay then, let's complicate the picture. Max has cerebral palsy, due to a stroke at birth. As a result he has severe speech impairments, some cognitive impairments, and challenges using his hands.

Oh, you say. Well then, let poor Max have his way. His life is hard enough as it is.

Not so fast, says his mother. If her goal is to allow Max as normal a life as possible, is she sabotaging that goal by indulging his whims? Are these quirks a part of his physical limitations, or rather the result of parents who confuse them for that?

You may know Ellen from her blog, Love That Max, which is a go-to resource for parents of children with a wide range of disabilities. There Ellen told of her latest dilemma, and asked her readers for their advice. I offered to ask my readers, too, as well as Dr. Jerry Bubrick, a cognitive and behavioral psychologist at the Child Mind Institute in Manhattan. Read what she wants to know, watch his answer, then use the comments to discuss what to do about Max.

Ellen writes:

I've been planning a birthday party for Max at an art studio, complete with purple craft projects, a table of purple shaving cream, and other purple wonders. Plus, of course, a Cars 2 ice-cream cake. As we've emailed about the event, the coordinator's come to understand just how deep Max's purple passion runs. "Now I'm wondering if it will be a problem for Max if his friends take home their purple projects," she emailed me yesterday.

Um, yeah. It would be a problem. Max would have a giant purple meltdown. He thinks purple is his color, and his alone. If we're talking with someone and I mention that Max likes purple and the other person says "I love purple, too!" Max will say "Noooooo!" And then, as his Official Spokesperson, I will explain that Max likes to be the only person in the room who loves purple, and perhaps they have another color they like?

The exchange with the art studio staffer did make me wonder about whether I give in too much to Max's obsessions. Like the way we'd only go to restaurants that served spaghetti when he was in his spaghetti phase. Or how he only wants to sit in corner tables at places, and so we do. Or how when we're driving on a highway, he'll insist on being in the right lane and we'll switch to it. Or how we'll let him watch the same Cars scene on YouTube 10, maybe 20 times in a row.

Of course, sometimes we center life around Max out of necessity. We know we can't go to certain events where there will be crowds and noise, which unnerve Max. We're planning a winter vacation right now and this one restaurant sounds awesome but they ring cowbells between courses and it's a super-busy place, so we can't check it out. And that's perfectly OK--there are other restaurants to visit, other activities to do.

For his art bash, though, it's his party and he won't cry if has all the purple he wants to, as the song goes. So I emailed the staffer, "I think only Max should make a purple project, and the other kids can use other colors." And that's the way it will be.

Still, I'm thinking I might need to take a stronger stance on non-birthday events. I do not want Max to grow up thinking the world, purple or not, revolves around him.