We’re Not Telling Our Son He Has Cerebral Palsy

  • By CP Dad Springible Contributor
  • Reading Time About 4 minutes
  • PostedMay 8, 2019
  • Category

My wife and I have decided to not tell our son he has cerebral palsy. And I know what you might be thinking: “You are ashamed and you’re keeping it hidden.” Or, even worse, “you are bad parents who cannot come to terms and you are deceiving him in the process.” In reality, it’s none of those things, and I believe that most people can appreciate the gravity of sitting his or her child down and having this kind of conversation. We need to be ready. All of us need to be ready.

We’ve had many opportunities to tell him. In fact, every day is an opportunity to begin that conversation. More than that, he’s asked us on some recent occasions about why he goes to see the doctors and physical therapists as much as he does. And (now that he’s five and able to process that his medical situation is unusual) we could have taken one of those moments. But we’ve decided not to tell him, and we won’t until the time is right.

Here’s how we know we’re not ready to tell him: we know our son. We know him as well as most attentive parents know their children, certainly better than doctors or therapists do, and well beyond any guides that aim to coach parents of children with special needs. All that input is good, but as so many experienced parents say, “nobody understands your child quite like you do.” We know with certainty that he’s five, he’s bright, he’s emotionally mercurial and not emotionally mature for his age, he’s incredibly inquisitive but not yet able to distill his thoughts and organize his questions, and he’s also sweet and sensitive. Frankly, we’re not trying to persuade others to follow our approach, and we don’t claim to know exactly when is right for every family in this situation. But we also know that we’re not trying to follow a special playbook, or a timeline that dictates when you’re supposed to tell your child something like this.

Who knows your child better than you do? Who knows your child that deeply and cares enough about him or her to think through all the layers of this kind of conversation? Who knows the questions your child will ask and how your child is likely to react to the answers that you give? It’s our call in the end.

We know we’re not ready for this conversation because our son cannot yet understand the difference between being born with a medical condition, and there being something wrong with him. Of course, there is something physically wrong with him, versus typical people, but he might think there’s something wrong with him as a person. He won’t necessarily be able to separate being born different from something bad having just happened to him, and he’s likely to grasp desperately at us for an explanation. But we know him. We know that our explanations and our answers won’t truly register in his mind yet. Instead of informing him, we might just confuse him and create anxiety.

Right now he doesn’t ask any real follow-up questions when we provide simple answers to his medical questions about why he sees doctors and therapists. That’s a clear a signal to us that it’s too soon. If he were mature enough to hear that some people are just born differently, and accept that there’s no rational explanation for why some things happens (that life is sometimes random and there’s no one to blame) then perhaps we could start the conversation. But at age five he’s not there yet. And we’re not going to jump the gun, even though people may judge us for “hiding something” from him.

I believe part of the oath in the medical profession is: first, do no harm. Right now, telling him runs a risk of doing him emotional harm. He won’t comprehend, our answers to his questions will leave him confused, and he’s likely to end up perplexed and upset. We don’t see the upsides of him knowing at this age, even as we clearly see that our journey will lead us to this important conversation, maybe in a few years, or several more than that. We will know when the time is right, but that time is not now.

Have you experienced this before? What would you do in this situation? How did you know when your child was ready to learn something like this?

– CP Dad