Yesterday at lunch I asked Toby's new teacher what she knew about Fragile X. In a nutshell, nodda.
In fact, when I expressed surprise that his special needs group was eating in the (insanely) loud lunchroom (it gives ME a headache) instead of their happy, peaceful classroom, she looked surprised by my surprise. I explained that he has sensory processing issues. That he could easily become overwhelmed by the noise and activity of the lunchroom. It might not be the best way to start his day. HOWEVER, because he loves to eat, and because he will be eating in this loud, active, place, then maybe he'll do just fine. OR maybe once the novelty wares off, it won't work out so well, and Toby will have to join his class after lunch. We'll see.
I KNEW I needed to put together something for his teacher about Fragile X, Toby and how Fragile X affects Toby, but after that conversation I knew I needed to do it sooner than later.
So that's what I did last night. On Day Two of school, Toby will have his school supplies AND a Toby resource folder with the following:
Some Fragile X Basics: (Pretty much totally ripped off from this blog post. Thanks, Bonnie!)
It's caused by a gene on the X chromosome.
Fragile X Syndrome is a lot like autism, except that it is genetic. As in, it can be diagnosed with a blood test and Autism can't. But, like Autism, it's a spectrum disorder, meaning that you could be barely affected or severely affected. About 1/3 of the people diagnosed with Fragile X Syndrome are also diagnosed with autism.
The symptoms are similar:
~gross and fine motor skill delays
~speech and language delays
~learning and behavior problems
~hypo or hypersensitivity
~cognitive and mental impairment
Just because you've probably never heard of it doesn't mean it's rare. It's really not all that rare; it affects one in 3600 boys and one in 4000 girls. One in 800 men are carriers of the gene that causes it. One in 260 women are carriers. Recent studies suggest that it might actually be one in 130 women. It's hard to tell because most of the time, you don't know you are a carrier until you have a child with it. It's almost as common as Muscular Distrophy and Cystic Fibrosis. It's the most common inherited cause of mental impairment.
How TOBY is affected:
-Speech and language delay
-Motor skill delays and poor motor planning
-Low muscle tone at his core
-Anxiety – particularly during transitions or in new environments, can even result in vomiting.
-Inability to “filter,” which leads to over-stimulation, which leads to hyper-arousal, which leads to “fight or flight” mode. “Fight” usually means hitting or scratching. “Flight” usually means hiding behind furniture. If you try to abruptly remove him when he is fleeing, then he will resort to “fight.” Use soft tones. Give him a motivator for leaving his flight spot. Don’t punish the behavior, fix the cause of the behavior!
-Sensory seeking. For Toby this means he is always putting something in his mouth. His chewing needs to be directed to something appropriate so he doesn’t eat up his own fingers! Also, when he is eating he stuffs. When eating, we are always having to remind him to slow down, chew first, wait for next bite, etc.
Other things you should know about Toby:
He loves to sing! He especially loves “Old McDonald Had a Farm.” He thinks it’s very funny to say there is a bear on the farm!
He will over eat and then he will promptly throw up. Don’t let him over eat!
If he downs an entire sippy cup he will need to be taken to the potty within twenty minutes, otherwise he will “pee out.” There is not a pull up/diaper in the world that can prevent this.
He loves Phineas and Ferb and The Little Einsteins. He also loves to sing the Little Einsteins theme song. One of his favorite books is The Very Hungry Caterpillar. He also loves Harold and the Purple Crayon.
He has a good memory! If you talk about something in a book (describe a picture or something), there’s a good chance that the next time you go through it, he will tell that back to you.
He will babble and list (prattling off colors, letters, shapes, characters in a show... seemingly at random) and label all day long. We’re trying to transition him into more meaningful speech!
His oldest brother, Kaden, is in 3rd grade at WP in Mrs. R’s class. Toby pronounces his name, “K-en.” He usually refers to his other brother, Blue, as “Bubba.” (Blue is in kindergarten at PP.) If he’s talking about Gus, that’s our dog.
He loves to swim (and he can swim without floaties!) and go to the beach so he talks about these things a lot too.
Additional Resources: (printed up and included)
The Putting Learning Styles to Work and Problems, Interventions and Srategies for Teachers sections in the Lesson Planning Guide for Students with Fragile X (This is a 198 page document put out by The National Fragile X Foundation Education Project. One of these days I'm going to read the whole thing.)
As I looked for the resources I wanted, I also ordered Transitioning "Special" Children into Elementary School so maybe I'll be copying pages from it and adding it to Toby's info folder as well.