Congenital Bilateral Perisylvian Syndrome

Made by Annapurna Digital

Hi, I’m 20 and Have BPP

Stacked Rocks Cairn

A couple of weeks ago I had a 20-year-old gentleman friend me on Facebook.  It was right after I created the new Facebook group page for CBPS, and had one of the members post two other Facebook groups that were Polymicrogyria related.  I friended those groups and posted my short bio of why I was joining, and then came this gentleman’s friend request.

I accepted the request, and shortly after, received an instant message (IM) from him: “Hi, I’m 20 and have BPP.”  I was at a birthday happy hour at the time, so I wasn’t in the mood to IM on Facebook… that was until I saw his message.  I told him that I had never met anyone over the age of 13 with BPP (the other name for CBPS), and was filled with questions for him.  He was nice enough to answer my questions as I sent him post after post.

Here’s Our Conversation

Him: Hi! I’m 20 and have BPP

Me: Wow, I’ve never met someone over 13 that has it!  Are you able to talk that well?

Him: No, not really. Just vowel sounds with the occasional soft consonant – and things like r, since r in English is mostly expressed through how it changes the vowels

Me: Do you work? Or are you going to school?

Him: Both – I go to college and work in their dining hall.  I study linguistics.

Me: How do you communicate with people? You don’t have to answer my questions, I’m just intrigued!

Him: A mix of my voice when they know me enough; ASL, and a text to speech app on my iPod.  I prefer the first two because they’re faster, but everyone understands the TTS.  I like answering questions!

Me: That’s exactly how my son is! He’s 12.  Do you find it frustrating to communicate?

Him: A lot of times, yeah. Especially when people don’t understand or when I have to repeat myself over and over.

Me: Do you feel like the world is too fast; meaning, they don’t take the time to slow down and listen?

Him: It’s most frustrating when I’m trying to speak Italian or German in foreign language classes – even my talker screws it up and makes it sound like I don’t know anything about the language.  Definitely! The ones who care enough slow down to meet my speed or try to understand my speech.

Me: I bet that is frustrating. Do you have a lot of friends or make friends easily?

Him: I have a good group of friends, and a lot of others are at least friendly to my face.

Me: That’s good, I worry about bullying with my Max, but he’s been good so far and he’s in 6th grade. What advice would you give me?

Him: I have heard of people asking my friends if I should really be at college which just makes me mad.  Bullying was bad in middle school.  Just keep encouraging your son and don’t let the school system bully him or push him down.

Me: That’s great advice! And that’s sad that people say that.

Him: They say that about all three of us here with an obvious disability.

Me: Have you dated before?

Him: No, I haven’t.  I also use forearm crutches sometimes – more in the past than now. I have balance issues and hypotonic.

Me: I worry about Max and dating.

Him: I’ve wanted to a few times, but always get turned down.

Me: I’m sorry, life isn’t fair sometimes, but it is your uniqueness that makes you, you! I know I don’t know you, but from what you’ve told me, I’m so proud if you!

Him: Thanks!

Me: Definitely know you can reach out to me anytime! And I’ll let Max know about you!

Him: Thanks! I’d be glad to talk to him too, if you’d like.

Choppy Conversations

Like I said, this was during an IM conversation, so I know it doesn’t flow that well, but did you see what I saw?

A mom that was amazed to meet someone who has left home and decided to live life on his own: in college and working… being part of the world, even with BPP.

I’ve worried so many times about Max being able to leave home, being able to date, being able to go to college; not that I don’t think he can’t do these things, but I worry about him not being under my roof and me not being there to protect him.

But this gentleman made me believe.

He’s showing the world that even without a voice, he can do it… and Max can too!

2 Comments

  1. Wow just came across your blog and can’t quit reading! We adopted our son 7 months ago and he was diagnosed right after we traveled home. So glad to read and have hope!

  2. What a beautiful conversation!!!!

    My daughter has had epilepsy since the age of 2. (She is now 16) This past Friday (Jan 17, 2013) she was diagnosed with Bilateral Perisylvian Polymicrogyria. I have been searching online to find out what it means for my girl, and came across your site and blog. Thank you for taking the time to write!!

    I am encouraged by your conversation with the 20 year old young man. I seek God’s best for him, your son and the rest of your family.

    Kindest regards
    Montreece

Join the Discussion