What a great morning.
Sure, it’s grey and cloudy and Casey’s bus to middle school --MIDDLE SCHOOL!! comes at 7am which isn’t a human hour.
I sit down to catch up on the world overnight and with a hot cup of coffee in hand I see it. NPR. ABC. USA Today. Rush University. Science. It’s all over this morning.
What is it? News that an experimental drug in clinical trials can improve the neurobehavioral function in individuals with Fragile X. Huh? English Laurie, remember-- it’s early.
A drug called Arbaclofen has been helping kids and young adults succeed in social settings that were previously overwhelming to them. That’s HUGE. You see, one of Casey’s biggest struggles is over stimulation. He’s unable to sort out what’s important from the background noise. This inability makes it hard to do things like learn. Or watch a movie. Or go to the fair.
Casey’s experience is limited to what’s familiar and comfortable. New places, sights, and sounds can overwhelm him. He used to smack his head on the floor and follow that with a spectacular display of vomit. He’s mostly outgrown that behavior now but new places are still hard for him.
One exception? This place. You’ve heard of the concept of The Third Place, right? It’s the idea that you have home, work, and someplace that you really WANT to spend your time. RCF is clearly Casey’s third place. (It would be his first and second if we let it) It’s full of familiar, happy, albeit smelly people who Casey knows and loves.
It’s full of predictable, routine things like pull-ups, barbells, CFKids (ha-ha). But much like Mister Rogers, who regularly visits on his lunch hour, changes his shoes and his sweater, interacts with other adults in his neighborhood, spends a few minutes in make-believe and then heads back to work, the ebb and flow of RCF is a familiar routine.
Casey thrives here. He gets to interact with kids and adults. Has he tried to hand you a beer yet? It’s his new favorite thing and maybe, just maybe, he’s on the something. We know he won’t let you leave without your gear bag and he’ll often hand your keys and wish you "buh-bye" even if you’re not quite ready to leave. He’s a hoarder, too. Have you ever tried to get 10# bumpers from Casey when he’s loading his bar? Good luck.
This isn’t one of the social situations that is rough for Casey. We think it’s because he’s been exposed to so much activity for so many years that he IS more capable of tolerating new experiences.
We took Casey to the rodeo about 2 weeks ago. He LOVED it. Usually, he hates the fair with its noise and crowds but sitting in the stands watching people fall off of horses was really entertaining to him. (C’mon, admit it – human suffering as a spectator sport is seriously funny if your filter lets you laugh at it. Casey has no filter so its HILARIOUS.)
He went to his first baseball game last summer. He sat through his first movie at a theater. Casey’s done some pretty amazing things lately.
We’ll see some pretty amazing things at RCF’s Strongest Man and Woman 7 tomorrow. Feats of strength. Cheering like it’s the Olympics. And Casey’s favorite --- high 5’s.
And all the while, we’ll be raising money for FRAXA and after we send it off, they’ll use about $0.93 of every dollar to fund research into treatments and eventually a cure for Fragile X.
And that cure? Yeah, we’ll read about it some cloudy, cool, early morning on NPR. ABC. USA Today. Rush University. Science.
And that will be another great morning.
(You can donate to FRAXA, the Fragile X Research Foundation via their website, www.fraxa.org. Click on the "donate today" button in the upper, right hand corner. Be sure to say it's in honor of Casey!)
Comments