Life with Fragile X Syndrome

Science!

Science!

Melissa

Caleb has, for a very long time now, exhibited a love of “SCIENCE!” It started with a butterfly unit in preschool and has never really let up. This is one of those things I know would be exactly the same even without fragile X. This boy loves science, he loves the natural world, he fixates on animals and documentaries. Frozen Planet rocks his socks off, Walking with Dinosaurs stops him in his tracks and I cannot even describe the awesomeness of Myth Busters (BOOM!)

When we were writing the IEP that would take Caleb from Kindergarten to First Grade, we tried very, very, very hard to convince them that science would be a better idea for inclusion than math. The team didn’t buy into that and…well…Monkey proved us right.

The new team, awesome as they were, also didn’t buy into Science as a good time for inclusion. We instead ended up replacing math with Writing Workshop which was, in hindsight, an inspired choice. It was perfect for him.

I still thought he should be included during Science though. He loves it, he is calmed by it, he will focus on it. I understood the hesitation because they don’t get to see him choosing documentaries over movies, they don’t get to see him so enthralled with whatever amazing thing is unfolding in front of him that he forgets to eat. Like with many things, Monkey needed only a chance to be able to prove himself. That chance came last week.

Last week Caleb’s inclusion class did a hands on science activity about compost. And this is what happened…

Caleb’s teachers are now planning to include him with future hands on science activities. One of these days I think we might even convince them to let him study the solar system with the class too. Baby steps.

Study update – Week 3

Study update – Week 3

Melissa

If you want to know how Week 1 and Week 2 went, check out those links.

I wish I had something amazing to say about our study experience but so far…we are just not seeing any major changes here. As much as I tried to prepare myself for the possibility of getting the placebo, I was really, really, really hoping for something else. As much as I am reminding myself that we very possibly might be on the placebo a new fear is creeping in…

What if he’s getting the full dose, and it doesn’t work for him?

Of all the possibilities that I ran through in my head, I knew that this was one of them. But knowing it and knowing it are very different once you’ve left the land of “what if” and are standing smack dab in the middle of “what is.”

Not all of the boys on the study have improved on this drug. We knew that from the stories people had shared and we knew it from the researchers and FX experts we’ve seen. This drug is doing amazing things for some of the kids participating on the trial but no one ever, ever, ever said this would be the cure…that this would fix it.

As a parent, I want nothing more than for someone “in the know” to give me some guarantees but they can’t. In all likelihood, this will help some but not all. In all likelihood, we’re still looking at a combination of drugs to fix what our one little broken gene has done. It’s supremely frustrating.

I keep reminding myself to be patient, that we are less than 2 months away from knowing for sure what the outcome will be on this particular drug. That whispering voice is becoming more and more distracting though. I find myself gazing out the window lost in thought trying to remember what it was like before. I find myself watching Monkey’s every move trying to decide if he’s doing more or less of that particular behavior. It’s enough to make a Mama crazy, and this Mama really didn’t need any help in that department!

51 more days. We’ve got this.