Tuesday, April 9, 2013

Lightning McQueen has cerebral palsy

"Max, do you know that you have cerebral palsy?"

It's twilight, my favorite time of day. I am lying next to Max in bed, and we are talking about important things—his next birthday party (which he started planning the day after the last one), summer vacation, his reluctance to return to school after spring break.

In recent months, Max has made all sorts of progress: potty training, handwriting letters, reading. At times, I can practically see his wheels spinning. Which for me has had the effect of making the elephant in the room, his cerebral palsy, even larger. I often wonder if Max understands what it is, or recognizes that he has special needs.

I have never had a full-blown discussion with him about the CP. Just little comments here and there like, "Max, that girl has cerebral palsy, like you do." I show him other blogs by parents of kids with CP. We've got a couple of books about characters and real-life kids who have CP, but he hasn't really been into them.

Sabrina knows that Max has cerebral palsy. Cognitively, I think, Max is able to understand. And I want him to own it. I'm not worried that it will make him doubt his abilities; Max only knows the word "can." When I watch him trying to keep up with other kids on the block, he just does his best. He's never put out that he can't pedal as fast. He's just happy to be cruising down the block on his bike.

And so, I ask: "Max, do you know that you have cerebral palsy?"

Max stares at me, sleepily. "Eeeyah!" he says. ["Yes!"]

And I go on, "Max, when you have cerebral palsy, it means your muscles don't always work the way you want them to. Like when it's hard to pick stuff up. But usually you figure out a way! Right?"

Max looks at me and sorts of nods. I'm not sure he's following.

"Max, does Sabrina have cerebral palsy?" I ask.

"Noooo," he says.

"Max, does C have cerebral palsy?" I ask [that's his best friend at school, who has Down syndrome].

"Noooo," he says.

"Max, does M have cerebral palsy?" I ask [that's another kid in his class, who does have CP].

Max doesn't answer.

And then, lightbulb! Lately, we've been putting Lightning McQueen to good use during speech therapy. Max doesn't like the oral-motor exercises, but he does worship at Lightning McQueen's altar. And so first the speech therapist does the exercises on Lightning's mouth before she does them on Max. Works like a charm.

"Max, does Lightning McQueen have cerebral palsy?" I ask, smiling.

"Eeeyah!" Max says, and he giggles.

This is just the start of many conversations, but I have my answer for now. Max is mature enough to get that he has cerebral palsy, and still young enough to think that Lightning McQueen can have it, too. And that's fine with me. Because if Max believes that super-cool Lightning McQueen has CP, then to him having CP must be utterly, perfectly OK.


  1. Hi Ellen,

    Max or Sabrina might ever be interested in watching the brainpop video about CP

    Login: bcps Password: brainpop

  2. I love that he doesn't see it as a big deal and cool like McQueen xx my four year old was in shock last week that Cooper will always have CP but Coops has no issue with it " I love it, I get to do what ever I want and always get free stuff" ;) ( spoilt master!)

  3. Beautifully expressed to Max, and his answer.....PRICELESS!!!! You are an amazing mom, and you give me fresh perspective and positive energy each time I visit your wonderful blog!! High-five from my Garrett to your Max!!!

  4. I smiled when I read your post and remembered similar conversations in my house. Nick is 24 now and he's always been non-verbal, save for a pretty good 'yes' and 'no'. Nick knew he had CP too, but it never stopped him from dreaming. He wanted to be an NHL star (I wondered how to react to that one, but then decided that all Canadian boys want to be NHL stars, even if they flunk PE, so I decided to agree about that being a great dream). Then, when the movie Space Jam came out, he wanted BE Michael Jordan. "Well, I guess if Michael Jackson turned white, you can be Michael Jordan", I remember saying and we both had a chuckle. I started introducing the real benefits of having CP at Disneyworld. No queues. We got a wish foundation trip to meet Stone Cold Steve Austin of the WWE and I asked Nick if he thought he would have received that if he had not been disabled with CP. "Nope", he said proudly. But, it's a slightly different story now - we still laugh about the 'benefits of CP', but Nick is not pleased about his body. He won't have a mirror in his room. He admits that he wants to go out less and less because he doesn't like the way people look at him. Nick's ideas about his own CP and his adult self-image are a work in progress. It's harder to joke about it now, though.

    1. Donna can you tell Nick that although having CP is hard God made him perfectly just the way he is. I'm Nisha - a 22-year-old philanthropist, webmaster and blogger who just happens to have CP - please read my story at http://nisha360.com/2010/08/who-i-am/ and have Nick read it too.

  5. Good start to the CP dialogue I remember trying to stand up at the age of 5 and immediately falling down that's when I knew I was different.

  6. :) Such a sweet and wonderful discussion!

  7. We were debating on whether or not to go to the CHARGE conference this year. I was talking to my husband about it and I said I want Sam to get something out of it too and he is only 2, he doesn't know he has CHARGE or anything. I doubt even Max, he's 4, knows what Sam has. So I asked Max if he knew what CHARGE was and he said "your in charge mom" Thanks for keeping it real buddy.


Thanks for sharing!

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