Congenital Bilateral Perisylvian Syndrome

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He Doesn’t Worry About What He Can’t Do

Max is Happy it's Summer

At the beginning of the summer, I kept beating myself up inside thinking about how hard it would be for Max to get a summer job.  He’s only 13 this summer, so it wouldn’t have been until next summer that we’d really have to worry about it.  I was already thinking that those jobs that teens usually get in the food service industry are out the door, because of the drool and his communication limitations.  At such a young age there really aren’t that many options for him already, but to add in his disability, well, the options are even smaller.  I would stay up at night crying over this, hurting for him, and wanting for him to have every possibility he ever wanted, but knowing that his life would be different… he would have limitations that would hold him back.

But then I stopped crying.  I realized how selfish I was being.

As his mom it’s my job to teach him about the things he can do, not the things he can’t do.  Max isn’t worried about the summer jobs he can’t have; in fact, he’s not worried about summer jobs at all.  He’s thinking about fishing, kayaking, camping, and all of the other summer things he gets to do.  A full year in advance here I am worried… and I shouldn’t be.

I don’t need to worry next summer either.

Because the truth is, you can’t dwell on the things you can’t do.  You have to look at what you can do, and Max has already figured that part out.  Maybe it was something he learned from his dad and me or maybe it was instinct, but he has more self-preservation than I’ve ever seen in a person.  He is tenacious, loving, and simple.  He doesn’t worry about what he can’t do.  He simply lives life knowing that he can do it if he really wants to.

5 Comments

  1. The top of The Cross is a “+”. May GOD bless you as HE blesses others with you.

    • My son Timmy is 9 with bi-lateral perisylvian syndrome, and was born with bi-lateral club feet. I have known for some time now, but just came to the realization that this is forever. I try so hard not to cry and worry all of the time. I do try and just let each day be a learning experience and support him the best that I can.
      I was wondering what state you live? I have lots of questions and our boys seem a little similar. Timmy is so outgoing and happy, he has a great outlook on life.

      • Michelle, we live in Colorado. If you’d like to connect with other parents, especially from your state, join our Facebook group. You can find it by clicking the Facebook icon at the bottom of the site.

  2. Brittany Zang

    June 5, 2015 at 6:40 am

    i understand what you all are going through. i may not know exactly everything about how you guys feel, but i know exactly how devistating it really can be. My sister was the youngest found with this disorder and she was the 32nd person found with it. she is 21 years old now and she does everything we do. she does drool alot but not as much as you would think. she has had alot of surgery on her mouth. Just keep praying and think positive and enjoy all the time you can. My sister has had jobs in the past. So just letting you know the people can not judge them on they look. I believe that you, how a wonderful child on your hands. Ive never met you but all children are wonderful if you look at the bright side. So just keep a positive mind. I wish you the best of luck to you and your family. Never let someone tell you your child cant do anything because if your child wants to you know they can.

  3. Elizabeth Abney

    March 30, 2016 at 9:13 am

    my daughter was not diagnosed with this disorder until she was 10 years old, even though mris were done earlier. She is now 19, and in college with the help of tutors, mentors and a learning center. She graduated from a private high school with a diploma in regular classes,
    I too cried thinking about what the future would hold for my daughter. All I can say is keep searching. The path may not be as clear as far other children, but there is definitely a path!!
    Never give up. They will succeed!

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