What I learned at the Fragile X Conference, Part 1

I have been to four International Fragile X conferences. I think a lot of what you learn depends on where you are in life when the conference comes around.

We are dealing with Drew transitioning from a private special ed. school to the public school. We were incredibly blessed to have his special ed. teacher attend the conference. Blake is transitioning from kindergarten to first grade. Both boys will be included with their classmates during specials, lunch, and recess. We aren't sure how much time they will spend with the other kids during the more academic classes. So, you have an idea where we are coming from and what our focus was in going to the conference.

First of all, we went to a session about hyperarousal. I think it is vital for everyone who works with Fragile X kids to have a good understanding of hyperarousal. It really is the source for key behaviors of our guys.

An overactive sympathetic nervous system is present in people with FXS. The normal sympathetic nervous system is to mobilize the body's resources under stress and to induce the fight-or-flight response. Our guys are on "high alert" all the time. They are often under stress. Their GABA inhibitory system is underactive. That means they do not have enough inhibition and have a difficult time settling down. Amygdala hyperconnectivity causes them to have rigid likes and dislikes. For more info about the Amygdala, click HERE It is an interesting article, though lengthy. Our guys also have a sensory habituation deficit which means they can't stop processing sensory imput. A typical person could put his or her clothes on and then forget about them. Ever have a tag that bothered you? It's all you can think about. That's how it is for every bit of sensory imput that people with fragile x receive. Try carrying on a conversation while that's going on!

The Goal (as defined by Tracy Stackhouse, Mouse Scharfenaker and Vicki Sudhalter) is to create a calm, alert and adaptive state, with positive affect and graded sensory reactivity. Sounds great, right? How do we do that?

*We need to provide positive behavioral supports for our kids. They do best with a provider whom they have developed a relationship with.

*Sensory-based strategies require close intervention by a knowledgeable Occupational Therapist.

*Since our guys rely on routines, this is an important source of comfort for them.

How can you tell if your FXer is hyperaroused? They hand-flap, finger-bite, get red ears, their heart races. You may see perseverative language or a fight or flight response.

What causes hyperarousal? loud noises, transitions, flickering lights, crowded conditions. Strong odors may cause hyperarousal. Just plain having fun can cause hyperarousal. Remember what I said about the underactive GABA-inhibitory system? They can't settle down easily, even from a positive task.

Something I have heard many times over the years but have never successfully implemented is a good sensory diet.

I will start a new post about sensory diet next.