Wednesday, January 4, 2012

To Tell or Not to Tell....That Is Thy Question.

Opinions please....

Those who are close to us know all about R's Tuberous Sclerosis diagnosis and struggles. The seizures, the surgery, the meds, the speech, fine motor and gross motor delays and all that comes with TSC.

Most are understanding, sympathetic and encouraging.

The question is do I explain and tell others? IE: gymnastics coaches.

 I don't know why I'm hesitating to do so.

But I feel I need to...yet don't want to. I want the coaches and others to see how great he is realize he has anxiety and needs extra encouragement...that when he hangs back and doesn't join in, he's scared and needs help....that the fact that he can do a somersault  and balance on a low beam is amazing.

That his funny baby calf let loose jumps on the trampoline is a big deal!

 That he just learned to stand on one foot and cross his fingers on one hand over the Christmas break and is SO PROUD! 

That he needs smaller, shorter, simpler directions.

B would tell. B the D...the awesome dad. HE keeps a pic of R from ICU, post surgery, and has been known to show it to the PUF Intake Coordinator and R's coach last session. I don't have said pic on my phone. I keep it in.

Yet, part of me doesn't want to keep it in. I feel like I'm making a big deal of something....attention grabbing or something....I just don't know....

What do you think you would do if you were me?


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  2. Hmmm, that's a tough question. I know I'd be super proud he's accomplishing all those things and that you should never feel like sharing his story is "attention grabbing". It may grab attention, but only because he is doing so amazing!

    I think you should share when you feel it may be necessary for him to get the best experience in whatever activity he is doing/playing. It can't hurt to raise awareness and give a gentle reminder that everyone learns at a different pace, even if it's balancing and crossing your fingers. You sharing your story might just help someone else get that little extra attention as well, so its win win all around :)


  3. I think if I was the teacher I would like to know so that I could share that extra feeling of accomplishment that he is working so hard to do what he's doing.
    On the other hand, as his mom it's up to you to feel whether that teacher would really appreciate what you are explaining. Maybe being 'normal' sometimes is just being allowed to blend in with the other kids...?? Not sure.