His speech pathologist contacted the Fragile X Foundation for some advice. They suggested a number of things including video modeling, which I had read about before but never tackled because Punkin seemed a little young. Regardless of whether or not we end up using this approach at school, I am excited about the possibilities.
Looking for the hard copy of this article also brought me to my conference notes. Here are the ones I typed up, for what they're worth. Keep in mind that I am addressing his teachers.
Autism Spectrum Behaviors (in FXS kiddos and adults) are often a result of anxiety and/or hyperarousal. Stress increases physiological responses: fight or flight, cortisol (stress hormone) levels, and sympathetic activity -- resulting in erratic behavior and poor language
To avoid anxiety and hyperarousal:
Don’t Impose yourself in any way (physically, verbally)Look for signs of distress:
affect without overstimulating (as we've seen, though, this sometimes produces unwanted effects)
Facilitate -- him initiating and him responding without demanding (use fill-in-the-blank sentences)
Modeling -- through self-talk
Slow -- give him more time to respond
Increased perseveranceTo help him regulate:
Shut down (I think
of the kicking, hitting, refusal to sit on the carpet, head banging, ect.)
Deep breath modelingCozy Corner: A small space with favored items
Don’t be physical (you know what he can handle and when -- he trusts you by now)
Decrease your eye gaze
FX Kit (will explain later)
BOB Box (will explain
BOB Box (Biting Options Box)
Always availableFX Kit (This is more for me)
Examples of contents: Gum, chewy foods, chew tubes, sour
candy, drink with a straw or a water bottle you have to suck on, pop rocks and
anything he is allowed to bite HARD.
Emergency itemsThis is the basics of a sensory diet. It has to be individualized for each child. The purpose is to decrease defensiveness and to maintain an optimal state of arousal across a long period of time (the school day).
For him, this would include goldfish crackers, a chewy tube, a juice box with a straw, ducky, maybe a small Woody doll, Sour Patch Kids (candy), Brown Bear Brown Bear What Do You See?, a photo album with familiar photos and people. They also suggest a Coping Keychain -- a stretchy keychain with a mini schedule on it -- and a bar of chocolate for mom.
Movement: swing, dance, rock, explore body positions,
Deep Sensory Input:
pushing, pulling, lifting, carrying
Fidget Toys: large number of choices (ducky is fine, I think, because he doesn‘t see it as a toy), they suggest letting all the kids have one, but I know that it’s clearly easier said than done
Sometimes take away: headphones, ear plugs
Sensory choice board: can initiate on own anytime (I
don’t think he is ready for this, I think we need to structure the breaks into
the day or else he will be requesting them all the time.)
“Brushing” was also suggested for deep pressure as well as oral input (sucking, chewing, blowing, licking)
Modifications to the environment may need to be made -- low lighting, ect.
Also, there are quite a few references in my notes to simultaneous learning versus sequential learning. From what I understand, this style of learning is different than most people. People with FX need to see the entire process, including the end product, before beginning the process. So they suggest having mini schedules for things like carpet time and group activities. For example, he needs to see all of the pictures for the speech lesson all at once so that he sees that there’s a beginning and an ending. I know you have something like this for toileting, but maybe he could have his own copy to hold onto or have in the bathroom next to the toilet.