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barrier quotes and bullying

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barrier quotes and bullying

Beth, Wade and I are trying to update you as often as possible while cramming two weeks worth of stuff into six days. A quick note about the barrier discussion last night that I think is of interest to parents. I am sure you already think about this, but they expressed the difficulty in having to share their personal information with people they don’t know like the hairdresser and that often times people share their medical history right in front of them as if they are not there. They also talked about when people expect you to be able to do things because you look “fine”. And the opposite, that people underestimate your abilities based on your appearance. Halie had a great quote about people talking to her by saying “hi sweetie” as if she was a dog. She also said when people try to push her wheelchair without asking she wants to say, “You get there, I get there, so just shut up.” She got a huge round of applause for that. Several other people had great comments on these topics including Connor, Jacob, Lauren and Molly. Never estimate the ability of the group to advocate for themselves.

Tonight we are talking about bullying. Working with teenagers, you expect some bullying. While this group is usually extremely tolerant of differences and even empathetic towards bullies, we still notice some small things and want to have the discussion early. We also talk about the fact that sometime braintumors impact impulse and emotion. Several people have stepped up and are going to talk about how they were bullied and how it is hard for them to control emotions and impulse.

We will tell you more about the community service project later.

We all just said how much we love our jobs and how much we learn from this group.

And we are so grateful that you are there for our kids!!! Thank you. Alice, Lexie's mom
Thanks for the updates and everything your Doing. I think Alex is going to get so much Out if this experience. Feeling grateful :)
Thank you for sharing these insights! They are SO helpful! I try so hard to let Matt 'own' his health issues. I'm great at talking about how this is HIS trial and not mine. And yet...... I'm TOTALLY guilty of talking about his medical stuff in front of him. It's a hard piece of the transition puzzle to back out a little bit and make sure he is the one talking about it. Not me.
Ha!!! I'm totally guilty of sharing kyles medical history with others and I know I shouldn't. This post made me think twice. I know he's 16 and totally capable of speaking for himself. Note to mom: shhhhhh. Lol

GUILTY AS CHARGED!!! I guess since Katie was first diagnosed at 9 yo and I had to speak for her, it has just become natural.  I guess I have to realize that I may not want all of my medical info shared with everyone, why would she.....Thank You!


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