Tuesday, January 27, 2015

On explaining your child's disability to him

A group of students are visiting Max's school next week, and Max had to fill out a form about himself. Next to "It is easy for me to..." he wrote "laugh." And next to "It is hard for me to..." he wrote "talk."

My heart twinged. Obviously, Max knows how much effort it takes to articulate words, it's just that he's never acknowledged it. I do—I regularly say "Honey, I know it's frustrating" when he's trying to say a word or a phrase that I can't understand and he's insistent on speaking it instead of using the speech app. Max tends to lean over and repeat himself loudly in my ear, because he thinks I have a hearing issue. It's me who has the problem, not him. Love that.

Max knows he has cerebral palsy, and is figuring out what that means. (A couple of years ago, he informed me that Lightning McQueen—his idol at the time—had cerebral palsy, which I figured was a good sign.) I try to bring up the CP in an organic way, like after he wrote that talking is hard. I explained that the muscles in his tongue sometimes don't do what he wants them to, because cerebral palsy can make it hard to move certain muscles. I showed him that his body has lots of muscles, from head to toe. I asked him to pick a leg up off the floor, and told him he did a good job using the muscles there.

Someday, I'll explain to Max that his brain can't always send signals to his muscles to tell them what to do, and we can talk about the kind of CP he has (spastic four quad), but we're not there yet. I'm not sure about the "right" way to talk about cerebral palsy. As often happens with parenting, you wing it and hope for the best. Who knows, maybe I'll be able to outsource it. He he.

So then Max grabbed his iPad and showed me photos of classmates. He was asking what was up with them.

"You know some kids have autism, right?" I asked.

"Yeah!" he said.

"And C. has Down syndrome," I said.

He nodded.

"Sabrina?" he asked.

He wanted to know what Sabrina has.

"Sometimes, she has an attitude," I said, cracking up. He didn't get it (perhaps a sign I really should outsource future conversations). Then I told him, "Sometimes people have challenges that you can see and sometimes you can't see them." Then he decided enough with the talking, he needed to go watch some fire truck videos.

To be continued.


  1. My path to recognition and acceptance of my disability has been a long one. Not to sound rude or offensive, but I don't have any cognitive delays so that eased the process. None the less at 5 when you have a hearing aid and no one else does, you question it and learn to explain it. I had a harder time accepting my developmental delays (speech, fine motor, gross motor) that resulted from my prematurity, probably since they were more abstract of a concept. I grew to realize that my challenges make me who I am and I am a great person. All of my understanding of my hearing loss went out the window when I was 15. I was told my hearing loss is sensorineural not conductive, like I had been told for a decade. I was crushed because I know would have hearing loss for life, instead of corrected by surgery as a teen. In hindsight, it has been a blessing since I have become much more interested in disability rights and advocacy. Almost a year and a half later, I fully accept it again. All this to say, this is a process, a long one that may have bumps, but someday Max will understand.

  2. I love your sense of humor

  3. Sometimes, people don't get it. Why should the student in honors classes and band get accommodations if s/he can perform to passing standards without services? In your "People who Get it, People who So Don't" post, someone lashed out at me and called me an impostor.

    1. People don't Anna. They don't. It bothers me so much. In my case I have a hearing aid, a visual sign that screams "disability" if noticed, but other people(like you) don't have any outward signs of disability yet still have one. I'm in AP English and practically my whole class hates me b/c I get more time. You always make perfect sense. I totally get you.

    2. At the college level, I'd estimate that the number of people getting help for "invisible" issues far outstrips the ones who have what is more conventionally thought of as disability. Virtually everyone I knew was getting some kind of accommodation for mental health, for example, and in many cases it helped tremendously!

  4. I really needed to read this right now. My son is 3.5 and doesn't know anything about his CP. We've gotten by with just explaining that he needs extra help doing certain things and he's still learning how to walk. He's never questioned why he needs the help and his twin brother doesn't. I like the idea of just talking about it organically rather than a formal explanation of his differences. I would hate for him to feel different about himself after learning he has "cerebral palsy" or a "disability". But on the other hand, CP will be a big part of his life so it's important not to downplay it. I don't know. I'm kind of unsure of what to do/say when the time comes.

  5. You're an awesome Mom, Ellen!!

  6. You did a fantastic job explaining the talking thing just keep explaining CP to him at an age-appropriate level and he'll be great. You are a phenomenal mother, Ellen, never forget that.

  7. I finished reading "Out of my Mind" (in two days, so good!) and I loved the part where Melody said "Everybody has a disability! What's yours?" So true! Every single human being has struggles and things that don't come easily. I love watching Max's journey through this blog. Thank you for sharing!

  8. We've been going through this with Jack lately (age 6 now.) But the great news? Now when someone asks Phil or I, "What's wrong with him?" JACK speaks up and says "My legs don't work like yours because I was born with CP." LOVE that he's taking that ownership himself now!

  9. Another great and honest post. When I got to the part about you saying Sabrina "has" an attitude, I burst out laughing!


Thanks for sharing!

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