Those freaking IEPs.

I think one of the most stressful parts of having a child with fragile X is the whole IEP process. Obviously, we invest a lot of emotion in this process because these are our babies, our prides and joy and we want nothing but the best for them. Then we are thrown into this . . . → Read More: Those freaking IEPs.

We are at 1/4 dose and…it’s not awful!

When we decided to take Monkey off Celexa, hoping that he might qualify for the STX 209 trial, you might remember I was a little apprehensive. OK, maybe more than a “little.”

Hope, it isn’t always pretty.

I’ll be totally honest, I’m still waiting for the $hit to hit the fan but so far, . . . → Read More: We are at 1/4 dose and…it’s not awful!

Things I wish I had known when Monkey was diagnosed.

Every once in a while I’ll skim through some of my older posts and find myself shaking my head over some of what I wrote. Perhaps it’s just wishful thinking but it seems to me that there was an awful lot of hysteria and near hysteria back in those early days that I just . . . → Read More: Things I wish I had known when Monkey was diagnosed.

Hope, it isn’t always pretty.

Last night, as I was getting Monkey ready for bed, he looked me right in the eye and his face lit up. It was one of those perfect moments when I just knew that he loves and trusts me implicitly. Naturally, I burst into tears and after putting him down for the night I . . . → Read More: Hope, it isn’t always pretty.

We need a little Monkey funny, it’s been too long.

A few days ago, Eric and Monkey were driving me to work. As he often does, Monkey asked for “Donuts? Coolatta fipped cweam?” And, as he often does, Daddy cruised around the rotary and reversed direction to get to Dunkin’ Donuts. No, I did not complain.

A while back we introduced Monkey to breakfast . . . → Read More: We need a little Monkey funny, it’s been too long.

Everyone will think they know what this is about.

You will all be right.

At the conference, during a carrier workshop, I listened to Dr. Randi Hagerman talk about the many symptoms that carriers have in common. It was an eye opening session. It was a relief to know that these things that I’ve thought were just in my head are real and, . . . → Read More: Everyone will think they know what this is about.