Tuesday, November 25, 2008


I finally checked the voicemail on my landline and the Fragile X Clinic in Chicago can see us on December 29th! This is a huge improvement over April of 2009. When I first called them I didn't think waiting until spring would be a big deal, but now I am really anxious for advice to help him control his emotions. December 29th will be crazy because family will be here or maybe just leaving, but it's ideal for me because I already have that day off of work.

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)
Exaggerate your
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
Look for signs of distress:

Increased perseverance
Red ears/face
Gaze avoidance
Shut down (I think
of the kicking, hitting, refusal to sit on the carpet, head banging, ect.)
To help him regulate:

Deep breath modeling
Don’t be physical (you know what he can handle and when -- he trusts you by now)
Decrease your eye gaze
Cozy corner
FX Kit (will explain later)
BOB Box (will explain
Cozy Corner: A small space with favored items

BOB Box (Biting Options Box)

Always available
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.
FX Kit (This is more for me)

Emergency items
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.
This 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).

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.


FXSmom said...

that rocks that you got in so quickly!! Ya know we will want a full report :)

Landon Andrew said...

That is great Erika. I can't wait to hear the response. We went about two weeks ago and was there for three hours, so prepare for that. We brought a DVD player, toys, food, etc. Is anyone going with you to help?? We brought my Mom to keep him entertained.

Lorie said...

We used picture schedules for EVERYTHING when Cal was younger, but as he's grown...we don't use them anymore, we use verbal prompts and oftentimes we use the clock or our watch. Of course we weren't able to only use verbal prompts until he was 7 or 8. He still uses a picture, it's a smiley or a sad face, for his implemented BIP at school; and it works. The only thing with picture schedules, that I really didn't care for, was the fact that he started to really become dependent on them. I had all sorts of pictures available, in case the schedule changed or plans changed; because change was/still is the cause of most of his meltdowns. I hope your visit on the 29th goes well...glad you got it moved up.

Pumpkin's Oma said...

That's a great date and plan on my going. I'll let relatives know and I'm sure it will be fine.

No losing track of time at my house:)

Holly's Mom said...

Thanks for sharing these notes they are great. I am so happy that your appointment got moved up. I can;t wait to hear how it all went.