Friday, October 22, 2010

A Fragile X Filled Week!

Almost a week since a most excellent Fragile X Conference I attended in CT. I took B's 2nd grade teacher with me as well as 2 moms, 1 newly diagnosed and 1 who I've known about 5 years, she's a veteran.

For me, most of the material isn't new, but as mom, it's not always geared towards me. Case in point. Ben's teacher sat through a seminar about how to make modifications for kids with Fragile X and voila...THIS happened. Ben got 100% on his test this week, by the way....just sayin!

It was such a positive experience to have a teacher with me...I'm only sorry I couldn't convince more of them to come. Last night, I attended the PTO meeting at the Early Learning Center (ages 3-5) both my kids attended. I run into the SLP who had my older son, 10 years ago when he started. She was his SLP for 3 years, and essentially taught him to speak. She mentioned to me that she was unable to attend the conference this past weekend, but had wanted to. I was so touched...she hasn't had a child with FX since M, and she hasn't seen him for speech since 2003. She never saw B, he had been assigned a different SLP. That FX touched her life enough to want to learn more really made me happy.

I mentioned to her that in Fragile X related professional development was coming to Marlboro in February. I can't even explain how excited I am about that. To have an expert come in and teach teachers, ST, OT, and PT, LCSW, etc....is beyond my wildest dreams, and was a long time in the planning! I can't wait to see that come to fruition. Just need to figure out how, as a parent, I can attend that one ;-)

I have also been thinking a LOT about trying to raise some serious funds for Fragile X. I feel like that's my next hurdle to tackle, and it's become a necessity if we are indeed going to get this LINKS thing off the ground. More on that later....

A really good week overall for Fragile X in my world, and that's saying a lot, since honestly, sometimes Fragile X makes my life very difficult...
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