Monday, December 26, 2011

Ehlers-Danlos Intervention

We're watching the last few minutes of Intervention, and we are floored by this woman blaming Ehlers-Danlos for her problems. When it came time for the intervention and the director of the Ehlers-Danlos National Foundation came to participate and told her family that EDS had nothing to do with her behavior, DH and I were nearly shouting out cheers of support. During the show we were so concerned that it was going to be yet another show bringing attention to EDS but in an entirely incorrect manner. There is no one better to have at the intervention than the EDNF Director and I am SO thrilled the show sought him out. I hope she will be ok. She clearly has some serious mental issues.

Christmas was quiet around here. We're doing the best we can, one day at a time, but still wishing there was a way to get out of here. It would be great to go somewhere we could life, such as getting C in Boy Scouts again. They started meeting in an inaccessible location here so we had to stop going; they told me if they moved to a location physically accessible to me they'd let me know so we could return. I also tried to see if any of the parents would be willing to pick him up along the way to taking their boys to the meetings, but no one ever wanted to. So C has missed the last two years of Scouts because of it. It's upsetting because there are very few non-physical activities available so he's out of luck. He basically has to sit back and watch M run around and have fun. How do you explain to a 10 year old he has to stay behind while his sister can do near anything? What happened to the goal of teaching that having a disability does not mean you CAN'T do just means you have to find a DIFFERENT way to do it! It gets hard to keep up with that mindset when some people seem set to squash and beat you into the ground time after time. I hope we can show C that anything is possible, that he can do whatever he sets his mind to, even if he just needs to go about it in his own unique way. I just have to find a way to GET him there to do it! Living here though just makes things so incredibly impossible.

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