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My heart is breaking for my son right now

Posted by on Sep. 21, 2013 at 11:37 AM
  • 18 Replies
1 mom liked this

I was sitting talking with him this morning and I asked him how he was feeling....if he had any questions or anything he wanted to talk about. He told me that he told one of his friends at school that he has cmt and that's why he can't run like everyone else. He told the boy he was born with it and that its not something he can catch like a cold. Now the little boy stays away from him. He won't get too close because he's afraid he will catch it from Cody. I know he's little and doesn't understand but it just breaks my heart for my son. He's afraid to tell his other friends because he doesn't want them to do the same thing.

I don't know what to do. I'm so glad that he is accepting it so well and is so open about talking about it. I just don't want his friends to shut him out because of it.

What would you do?

by on Sep. 21, 2013 at 11:37 AM
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Replies (1-10):
SamMom912
by Silver Member on Sep. 21, 2013 at 11:55 AM
Id see if the teacher could have the school social worker talk with the boy about his irrational fear of your son and enlighten him.

Maybe your son didnt explain it in a way the ither bot can comprehend? Or that he was comfortable with...
letstalk747
by Joy on Sep. 21, 2013 at 11:58 AM

i would have another -  very delicate chat about not telling kids because they wont understand- but might when he and they  are older   , and that if someone asks him anything say  something like  my legs arent working for running now because my muscles are tight or something close to this-  so there is no reason to bring it up

Codysmom2106
by Bronze Member on Sep. 21, 2013 at 12:05 PM


I told him not to say anything to anyone else right now until I can figure out what to do. 

Quoting letstalk747:

i would have another -  very delicate chat about not telling kids because they wont understand- but might when he and they  are older   , and that if someone asks him anything say  something like  my legs arent working for running now because my muscles are tight or something close to this-  so there is no reason to bring it up



Codysmom2106
by Bronze Member on Sep. 21, 2013 at 12:07 PM


I thought about talking to the counselor. I will more than likely be meeting with her this week for his 504 meeting anyway.  I'm just not sure if that's the way to go or if it will just make things worse. 

Quoting SamMom912:

Id see if the teacher could have the school social worker talk with the boy about his irrational fear of your son and enlighten him.

Maybe your son didnt explain it in a way the ither bot can comprehend? Or that he was comfortable with...



Elyssa414
by Elyssa on Sep. 21, 2013 at 12:08 PM
You can go to the school and give a kid friendly presentation about it. Try to find some famous people with it to share with the kids and talk about how people with cmt are much more ALIKE than DIFFERENT. And try not to really make it about your son, just about cmt.
Pukalani79
by on Sep. 21, 2013 at 12:12 PM

 I love this idea!

Quoting Elyssa414:

You can go to the school and give a kid friendly presentation about it. Try to find some famous people with it to share with the kids and talk about how people with cmt are much more ALIKE than DIFFERENT. And try not to really make it about your son, just about cmt.

 

mandee1503
by Amanda on Sep. 21, 2013 at 12:34 PM
I'm so sorry. Maybe you can call his parents and explain so they can tell him.
raysma07
by Bronze Member on Sep. 21, 2013 at 12:35 PM

MY DS teacher last year let me come to the class and talk about my DS and his Cystic Fibrosis and how he needs to keep his hands clean and why he is out of class some times for a week or so when he is sick. we got to explain that he is born with it and no one can get it that wasn't born with it and it went really well . we do the Great Strides walk every year and we even got some parent to bring thier kids it was great! Talk to the teacher see what can be done you will be surprised !

SamMom912
by Silver Member on Sep. 21, 2013 at 1:28 PM
Maybe its me; but i think all fear is based in the unknown... If you take away the unknown and teach kids the facts then I cant see why the fear/ alienation would continue.
But maybe im wrong...
The counselor may have another idea too... Im sure this isnt the first time a situation like this has occurred at the school. ;)


Quoting Codysmom2106:


I thought about talking to the counselor. I will more than likely be meeting with her this week for his 504 meeting anyway.  I'm just not sure if that's the way to go or if it will just make things worse. 


Quoting SamMom912:

Id see if the teacher could have the school social worker talk with the boy about his irrational fear of your son and enlighten him.



Maybe your son didnt explain it in a way the ither bot can comprehend? Or that he was comfortable with...





Codysmom2106
by Bronze Member on Sep. 21, 2013 at 4:39 PM
1 mom liked this

Thank you all so much for the awesome ideas! I love the idea of teaching the class about it! I think I will probably at least bring it up with the counselor and see what she thinks. Thanks again, I really appreciate all of your help and support. 

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