Congenital Bilateral Perisylvian Syndrome

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Disabled Kids & Family Issues

My Max

I’ve felt a lot of hurt in my life, but I think the biggest thing that my heart has gone out to is my children.  I’m sure that any parent could relate, but I think my circumstance is a bit different.

I love white bread with all of my heart, I’d die for him, and the same goes for Max.  But the difference is that I worry about Max more.   I worry about his relationships and I worry about bullying because of his disability, but I find that the people I should be able to trust the most fail on him.   Here I am crying because I’m worried about what 6th grade means for him, and he gets publicly humiliated tonight, and I did nothing.

What’s wrong with me?

I knew I should have stopped it, and I was ragging inside, but I also felt like I shouldn’t step in.

Max asked for chocolates tonight from his grandmother (right after Max’s brother did) and his grandmother poured a cup of some for him.  Max wanted more and instead of simply saying “thank you,” he said, “What?  That’s it? “ then he walked away.  He noticeably got less than his little brother, which is why he commented.  Don’t get me wrong, he should have been graceful about what he received, but come on, he knew it wasn’t fair.  But this is where I should have stepped in… his grandmother called him back into the kitchen and said, “Excuse me!  What did you just say?  You should be more grateful!”  She took his chocolates away from him and began to reprimand him in front of the whole family… 8 other adults and 5 other kids.  Of course the entire room fell silent as she reprimanded him and all of us were curious about what he did wrong.

He didn’t say thank you… that was it.

But yet, he was publicly humiliated in front of all of these people.  I had fire inside of me.  I wanted to yell at her and tell her to stop and that she should take him to the side to talk to him, or at the very least bend down, get at his level and chat with him on a much mellower tone… but I did nothing.  I half wanted someone else to step in to say something, and I half wanted to just yell and put a stop to it, but I didn’t.  I didn’t do anything, and it hurts me now.

I talked to Max about remembering to say thank you and also told him that what happened was not right.  I don’t want him to not listen to his grandmother, but what happened was embarrassing… it would have been embarrassing for anyone!  I don’t want him to not respect his seniors, but again, I don’t want him to get walked on.

When is enough, enough?

A lot of times I feel that Max gets pressure on him because it takes him longer to get out what he wants to say.  I want to jump on people when they don’t give him the time he needs, like when he’s trying to order food at a restaurant, but I also know that, that’s his reality and I can’t always be there.

So, I must let go and let him grow up, but I have such a hard time letting go, especially when we still have family that puts him down.  I can’t make everyone love him… that’s up to him, I know.  All I can do is support him and give him the strength in confidence he needs.

I’m worried about middle school next year.  I’m worried about bullying and I’m worried about the kids bringing him down in spirits all together.  He’s so amazing.  He’s so awesome.  I don’t want to see them break him.

Gosh, all I can say to a new parent of a disabled kid is to be prepared to worry and cry and be scared, but most of all, be the most proud parent you’ve ever been in your life!

Prayers for Max.

3 Comments

  1. Kasy,

    Thanks for sharing your story. I have 5 children and my 3rd child has Perisyvian Syndrome. It came as a shock to us but we have loved him just like all the others.

    I completely understand how you feel about the worry you have for him. I am the same way. I recently transferred schools and work in the same building as my son, Roman. His teacher is amazing but I have learned some heart breaking news about his previous teacher and how she handled him in the classroon.

    I would have NEVER thought in a million years that my son would have been subjected to the torment that he was put through and I find myself even MORE worried because the school has continued to allow this teacher to continue teaching. I am grateful that I was able to find out about it now and will be doing my best to speak out for those who can not do it on their own.

    Thanks again for the story!

    Marlena J

  2. Sorry to hear about what Roman has gone through, but I’m glad to hear that he has such strong parent to stand beside him.

    Keep on that teacher and make sure that all other parents are aware of how she is. It’s not just the disabled kids that are going to take the brunt of bad behavior like that; in the end, it’s all of them that suffer.

    Thank you for sharing your story!

  3. Just stumbled upon this blog and I love getting to read about other families that have kids w/CBPS. I don’t love hearing about all the sad stories and ways the kids are mistreated or differentiated but it’s nice to know someone out there relates to what we go through. My little boy’s name is Kevin. He has CBPS and pachygyria. He also has larygomalacia, sialorrhea and scoliosis secondary to the neuronal migration disorders. Kevin just started kindergarten this year and, WOW!, I didn’t know people in the public school system could be so cruel. We are having a heck of a time getting his IEP in place and the school seems to like to throw it in our face that until the IEP is is place they don’t have to make any special concessions for him. After reaching out to a child advocate and making many, MANY calls and emails to the school he has temporarily been placed in another class to better meet his needs. We are also struggling with his local neurologist. He is not that familiar w/what Kevin has so he kind of takes the “sit back and watch” approach on everything when a lot of times that isn’t really approriate. Prior to starting kindergarten, Kevin attended a therapy daycare where he received PT, OT, ST and behavioral therapy. Over the last two years his test scores keep declining and in the classroom they have noticed that they can teach him a skill one day and the next its like he’s completely lost that skill. It was identified two years ago by EEG that he had electrical discharges in this sleep and his therapists and teachers beleive that these are increasing and causing the loss of skill but the neurologist doesn’t want t repeat the EEG until he has an actual noticeable “clinical seizure”. I feel like everyday is a constant battle for my child. I mean, I don’t mind, he’s my baby and I’d do anything to get him what he needs. It just seems like everyone that is supposed to be helping him get these things aren’t interested in helping and would just rather ignore that their are issues to address.

    Thank you for this blog, I have very much enjoyed reading some of these stories and can relate to them.

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