Friday, February 27, 2009

Advocacy Day

I'm off to Washington DC next week for a couple days. The National Fragile X Foundation organizes their own "Advocacy Day" for parents to meet with their US Senators and Representative to inform them about Fragile X and ask for their support for legislation that supports research and funding for Fragile X.

Anthony and I did it together a few years ago, but I'm going to fly solo this time, going with another FX mom instead.

I'm nervous....as a carrier or FX, I have a fear of speaking with unknown people, though I've had to do it so many times in my life, that I don't think about it so much anymore.

It was hard to juggle this schedule...but we have worked it out. As luck would have it, I need to by at work in the city on Monday, and then gone Tuesday and Wednesday...it's going to a long week. I'll be able to work at home Thursday and Friday....it will work out!

Matty is going up in his dosage of Vyvanse tomorrow....from 30 to 40 mg. It's not been effective recently, but we did notice that when he started taking it a year ago, it was, so we're upping the does. We still will need to add something for anxiety in a week or so...we used Celexa for the past 6 months, with disappointing (no)results.
The problem with meds of this scope is that there is a build up as well as a weaning process, so you lose valuable time trying to see if a med works. His behavior in school is abominable at best, and non-consistent. Mind you, this is a new private school and he was doing great up until the calendar changed to 2009. I knew that after the Christmas holiday it would take him a few weeks to get adjusted again, but it's 2 months now, and it just gets worse. I've been there to see for myself. He's the only one (out of 10 students) talking out loud, fidgeting, fussing. Heartbreaking for me to see...but a reality check. I've enlisted the help of a NY FX expert to go and see him in the classroom, consult with the teachers, etc...but it all takes TIME and Matty's the one who is suffering. Whatever, we'll get to where we need to be.

Ben is doing great...he's sailing right along...his writing is improving everyday, his sight vocabulary is broadening each day, he's very funny, very entertaining, his speech is great...I get lots of good feedback from all of his team.

Anthony....poor thing...he's been under the weather for 2 weeks now...told him all along to call his doctor....finally, yesterday he caved...he's going on Monday. I keep telling him (based upon the symptoms I see and he's described to me) he has a sinus infection...we'll see if I'm right or not.

Total weight loss to date....16 lbs! Half way there....in just 8 weeks! WOOOHOOO!!!!

And you know, how I have nothing to do, right?

I have decided to run for a seat on Marlboro's Board of Education. There are 3 vacant seats, 2 of the current holders are running for re-election and 3 people ( me being 1) are running as well. Don't you think they could use someone with my perspective...there is only 1 woman there now...and they have no one who has children with special needs. It's not a political board, so I don't think anyone will accuse me of having an agenda, which I don't. I just want to give back to my town. I feel like Marlboro has done the right thing by my children to date, and I feel like a lot of things relating to special needs are not understood by the town as a whole.

Election is April 21...if you live in Marlboro and you're reading this, I would appreciate your vote!

More after Washington...photos too, I promise!
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