Friday, September 25, 2009

Sometimes Fragile X breaks my heart.

I took the day off to go to my grandfather's funeral today. But it was picture day at school and I needed a picture taken for my work identification badge. I spoke yesterday with the school secretary (my cousin Julie) about getting Drew's picture taken and put in the memory book for the school, even though he goes to a special ed. school at the moment. Eventually, he'll go back to Fort Loramie School, and it would be nice to have him in the book with his grade.

Anyway, I took the boys in to school at 7:30 today to have Drew's and my picture taken. Blake did his yesterday with the other kindergartners. They were taking pictures on the stage, which required Drew to go up about five steps. He dropped to the ground and refused to go up. His aide, Carol and I each had an arm and we got him up there. I got my picture taken first, thinking if he saw me do it, he'd be more inclined to cooperate. Ha.

When it was his turn, he was supposed to sit on a stool with his feet propped up on a footstool. Obviously not good for one with gravitational insecurity. She snapped one picture with him looking glum. As soon as the picture was taken, he got off the chair. We couldn't get him back on it. The photographer asked what he liked. At this point, the only thing I could think of was bribing him with seeing Grandma. His aide thought of haircuts. (he likes that, too!) But of course, he was beyond bribery. His pants are too big for him, and they were coming down, he was slithering around. Ugh.

At this time, the cafeteria was filling up with kids, and they were watching the debacle as well. I said, "Forget it. Thank you for trying." The photographer apologized, but I assured her it was not her fault. Drew went off with his aide so they could go to his school.

These are times when I feel sad for him. And me, too. I look into a roomful of kids who have absolutely no problem getting their picture taken. For them, their biggest worry is not getting wrinkled on the bus. And you know what? It just sucks.


the other lion said...

It does suck. Plain old sucks. And it isn't fair and there's no sugar-coating it. Some days I wonder where the strength comes from, but -- of course -- it comes from God. Wish I could give you hug.

Jen said...


Courage said...

I know how you feel : (

Anonymous said...

Hugs. I'm there with you.
Peggy E.

Jana Nickle said...

yup. me too. our boys are so much alike. Avery has issues with getting his pics taken and also the gravitational insecurities. It sucks.

fragilemom said...

I'm with you and hug you. We have the gravitational thing too. Sucks with the potty training when he feels not secure on a toilet!