Congenital Bilateral Perisylvian Syndrome

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Family Holidays Without a Voice

Thanksgiving With No Voice

Max usually does really well with vocalizing around family, because we all know about CBPS and how it affects him.  We know that it takes him a little longer to say things and sometimes we aren’t going to understand it the first time.  He typically musters through a sentence the best he can and signs to the people who understand sign language, but sometimes we still don’t get it and he’ll have to write it down.  I think that’s one of the nice things about Max’s CBPS, it doesn’t limit his learning and as soon as he learned to read and write he was able to write down things that we didn’t understand.


This Thanksgiving we had an amazing time with family, had plenty of food and followed our family tradition of playing board games well into the night – our family’s personal favorite is Trivial Pursuit.  This year, we all settled down to start the game, which began with 6 adults and one kid on one of the adult team’s, but as things typically go, all of the other kids (I guess they’re tweens) want to join in on the game.  The kids usually can’t answer any of the questions, but it’s fun to roll the dice, move the wedges around the board and read the cards.  Max decided that he wanted to join in on mom and dad’s team, and was up for the challenge of doing all of the same things that the other kids were doing.  The thing is, I get tongue-tied on Trivial Pursuit cards, so of course the kids get tongue-tied… but even more so for a kid with CBPS.  This was the first time that Max had joined in on wanting to read the cards, and when it was his turn to read, he grabbed the card, stared at it blankly and just started crying.

I immediately grabbed the card, tucked his head into my arm and held him as I read the card.  It really wasn’t a big ordeal – I mean the family didn’t jump up and ask what was going on, we just continued with our turn.  When we were done we all took a break and, of course, that was when everyone started asking me, privately, what was wrong with Max.  I told them that he really wanted to read the card, but was embarrassed because he knew that he wouldn’t be able to read it in a way that everyone would understand.  They of course though he was being silly because of course they didn’t care if he read the card, but I told them that it was still scary for him.  We all decided that if it was okay with Max, he could read the card and I would reread it – Max loved this idea.

We continued the game and Max read the card once.  I then reread the card so that everyone could understand it.  Max was able to join in on the game and feel comfortable because all of the family gave him a big round of applause when he was done reading.

I’m thankful for my family and their patience, but this did get me thinking about what he goes through at school.  How does he read out loud?  Does he?  Does he want to?  These are questions that I need to sort through with Max and his teachers, but it is these opportunities that make me think about things that are so common for the rest of us.

2 Comments

  1. Marlena Johnston

    February 10, 2013 at 8:59 am

    I wonder the same about my son. We have recently moved to a different area and he has struggled the entire year. He has only been to 1 school and that was the only school he knew. He doesn’t trust easily and I’m not sure if that is part of the issues that he has. I know some teachers think he is being defiant and that bothers me to NO end. This year has been our toughest year and I worry SO much about him moving onto Middle/Junior High School. I try my best to have the lines of communication available with the teachers and staff but I often wonder how they treat him when he loses focus, which is often, or when he just can’t carry the one on his math problems that they have been working on all month. I’m sure it is frustrating for them but my heart just trembles when I think about how frustrating it must be for my son, who can’t express himself they way he needs too or can’t say, “this is too hard for me” without being yelled out for not trying hard enough. He loves learning I just wish others understood children with CBPS better.

  2. @Marlena, I’ve always been scared to move Max to a new school; in fact, I struggle with working way to far from home just so we can keep him in the same school. I worried that he would not fit in like he does now; I’m sorry to hear that it’s not working out for Roman. Why do you think they think he’s being defiant? Can you talk/communicate with your son about what’s going on at school; get a better idea if he is being mistreated?

    If you feel that he’s not being understood, I’d say that you may want to go visit with the school to better understand what’s going on.

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