Talk to Child About Congenital Bilateral Perisylvian Syndrome

I get a lot of searches on this blog for “How to teach a child about Congenital Bilateral Perisylvian Syndrome (CBPS),” and thought I’d write a post to answer your question.

My guess is that you’re searching this for one of two reasons:

  1. You have a child that was recently diagnosed with CBPS, and you want to know how to talk to him/her about it, or
  2. Your child knows someone who has CBPS, and you want to teach your child more about the syndrome so they understand it better.

In any case, I think I can help you out with each of these questions, so let’s start with the first one.

Your Child Was Recently Diagnosed with CBPS

If you were like me, you already knew your child had something that was different about him/her, and he/she may have even been misdiagnosed with another disorder, but you KNOW it’s something else.  Then again, your child may have been just diagnosed with CBPS and you need to know how to talk to him/her about it.

If your child is older, he/she is probably well aware that he/she is different from others, so telling him/her about his/her new diagnosis is going to be easier, at least it was for Max.  He was diagnosed with Cerebral Palsy, at first, and he already knew he had a condition, so to tell him of a new diagnosis was actually a relief for him, because he could find other people like him.

But there will be others that don’t take the news quite as easily.  Depending on the age of your child, think about the way they take big news like this the best.

  • Should you tell them privately?
  • Should there be other family members involved?
  • Is it best to do it over dinner, or over ice cream?

Just think about what your child relates to the most, and make that environment stable for him/her before you talk to him/her about it.

On the other hand, if this is new news to you and the child, I’d definitely recommend making sure the environment is as child friendly as possible, but remember that your child may feel relieved to have finally found out what it is he/she has.  Think about if you were in his/her shoes and finally found out why you couldn’t talk and why you have a hard time eating… it may actually be a relief for them and a reason for them to seek-out other children like them (with your permission of course).

Either way, you are their biggest advocate, and need to make yourself available for their questions and what it means for them now.

  • What’s next?
  • Does anything change?
  • What do I need to do now?

They are going to be confused, but be available to answer those questions for them.  And I’ve learned with this blog that there are more people out there with children with CBPS than I originally thought, so do your research and reach out to other parents to get extra advice.

Your Child Knows Someone That Has CBPS

First off, I’m going to be sensitive to this, because I always wanted parents like you to reach out to me and ask about how to teach their child about CBPS, rather than just judging.

Secondly, hug your child.  They are curious, but coming to you to learn how to deal with someone who is different from them.  They are young and curious, and this is an awesome teaching moment for them – now and for the rest of their lives.

I get this question from kids all of the time.  You know how kids are, no holding back, and they aren’t bashful to come out and say it like it is (I applaud that sometimes; it’s what all of us adults forgot how to do).  And what I tell those kids is simple:

All of us are different, really.  Some of us have different color hair, some of us have different colored skin and some of us can’t talk, walk or see.  You’re different from me, but that doesn’t mean that I don’t like you.  We can make friends too, but we have to learn about each other, right?

Max has something that makes it hard for him to talk, and sometimes he drools.  I know that drool’s kind of yucky, but he can’t help it.  What if you couldn’t talk and couldn’t control your drool and no-one didn’t like you because of that?  It’d be hard, wouldn’t it?  Well, Max is different, but he is a kid, just like you.  He likes art, rocks, music and cooking; just like we all have things that we love to do.  Sometimes, he has to use his iPad so that you can understand him, but I bet if you give him a chance, you’ll learn to understand him better.  And the best part… he’s super, super fast at running, which makes him rock at sports; in fact, he’s faster than most of the kids at his school.

If you ever have a problem understanding him, just have him write it down for you, or ask him to use his iPad.  Soon enough, I promise, you’ll understand him, and you two will have your own secret language that I can’t even understand!

I’ll be honest, this doesn’t work with all kids (of course not), but it’s a start.  It helps the kid relate to Max’s condition, but doesn’t completely overwhelm the kid with all of the other stuff that may bore him/her.

I suppose the best message here is to teach your child to be patient.  I know this is better said than done; in fact, it’s actually adults that have a harder time dealing with his disorder than kids.  The majority of kids say, “Oh, okay, I get it.  Can we go play now?”  Whereas adults just don’t have the patience to sit and listen.  Your kid may not understand what CBPS is, but he/she will understand that a kid with CBPS is ‘different,’ but so is everyone else.