Wednesday, February 27, 2013

How to explain?

B has been noticing his tics. The other day he told his teacher "sometimes I blink a lot, or bend my head, but I can't stop". Oh, heartbreaking!

So I will be talking to B about his TS soon. He is such a strong young man and I know he can handle it. I was just hoping we could keep it from him or a while.

But why? Why would I want to keep this from B? Is it to protect him? Is it so he doesn't FEEL different? Is it so he will still be the outgoing, ambitious kid he's always been? Is it so he doesn't use his TS as an excuse not to succeed and to not do his best? Well, honestly, yes! All of the above! As his mother I want to protect him. Honestly I wish I could take this away from him completely but I know I can't. So instead I thought I was protecting him from... Well... from himself if I truly look at my actions.

Does that make me a bad mother? Maybe. But I know now that it is not right to hide his disease from him. It's not right to try to "sweep it under the rug" until he's old enough to pull up the rug himself.

So I will be sharing with Ben what it is that he is dealing with. I am going to tell him "its" name, explaining what it means to him and his life. Letting him know that this will NOT hold him back. Let him know that this does NOT make him any less amazing. Let him know that this is a challenge and it is his job to rise to it and to overcoming it. No, it won't go away, but it WILL make him stronger!

I found this great story online that I will be reading to him. http://tsa-usa.org/imaganw/Toby_final.pdf
I also found a newsletter, including several past newsletters, called "That Darn Tic". It is by kids, for kids with Tourette's. I think it will be good for B to read about other children with TS. They can be found here: http://tsa-usa.org/Publications/ChildrensNewsletter/athat_darn_tic.html

I also found a great site for my husband and me as parents! http://tsa-usa.org/aPeople/Parents/parents.html Of course I wish this wasn't something I had to do, but I am so grateful for this new found resource and am excited to explore all the information.


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