July is Fragile X Awareness Month so I've been sporadically facebook sharing and tweeting and instagramming various fragile X facts. Mostly statistics. Mostly not personal.
But today, July 22nd, is Fragile X Awareness DAY and I guess I should up the ante or something like that. Since Toby, our guy with fragile X, is five...
Five Ways Fragile X Affects Us
1. Quirky Conversations
Kevin and Kaden have been out of town, (They get home today!) so we remaining three have been playing musical beds a little bit. A few mornings ago, after a night Toby had slept in my bed, the VERY FIRST words he spoke in the morning were:
"Look! A lobster!"
In response to which I said: "Where?" (This is Florida after all. It's possible?)
And he pulled up his pillow and said, "Under here!"
But even without having yet put on my glasses, I could tell there was no lobster under the pillow, not even a crayfish he'd mistaken for a lobster. Silly kid.
2. Sad Realizations
Last week Blue (no FX) got to attend a camp at a nature preserve 5 days a week, 9am to 3pm. It cost $100.
Last week we spent $100 on Toby's activities as well. For his money's worth he got 30 min of speech therapy and 30 min of occupational therapy on Tuesday morning.
3. Deliberate Reading
Toby will be starting kindergarten at the school were Kaden and Blue already attend which is to say Toby will be his quirky, difficult self in the environment where my older boys are living out most of their social lives, the place where they are most at risk for peer rejection. Because of this, tops on our list for important summer reads for Kaden who is about to start 5th grade: Rules by Cynthia Lord a book about an older sister dealing with feeling embarrassment and resentment toward her younger brother with autism.
4. The Latest Obsession
There's always an obsession. Obsessions around here rotate from Phineas and Ferb to something else, back to Phineas and Ferb then on to some other thing, and back to Phineas and Ferb. Right now we're on a something else.
Since taking Toby to see How to Train Your Dragon 2, he has been obsessed with dragons. He must watch the first movie or the Book of Dragons EVERY SINGLE DAY. I have also bought him two HTTYD2 books to have in the car and a Toothless toy and some action figures which he will get in his first day of kindergarten zuckertute.
But you guys, when he TALKS about the dragons? The way he says "Whispering Death" in his little Toby voice? I melt.
5. Anxiety Throw Up Meets Summer Vacation
Anxiety throw up is always a problem. Anxiety is big for fragile X kids, and it's a real and most un-fun symptom that affects Toby. It's the primary reason we didn't all go on the trip Kevin and Kaden went on. Travel with Toby is hard on Toby. SO! MANY! NEW! THINGS! It's also hard on me, the person he most expects to FIX! ALL! THE! THINGS!
We DO travel. We're going to St. Pete Beach for three days coming up soon. Place your bets now on how long it takes him to throw up and where. I could make a grid! On one side: 10 minutes in, 30 minutes in, 1 hour in, etc. On the other side I could put locations: in the hotel room, on the pool deck (where I'd place my money), in a restaurant (another good contender). We try to make accommodations. What we will no longer do is travel all of us minus Toby. We tried this in March for our Haiti trip and it screwed up his sleep habits and increased his anxiety for months.
Yes, even on our home turf, we see anxiety.
Toby had swim lessons two weeks ago, and I had to clean much throw-up from the van that week. Toby can swim. Toby LIKES to swim. But MAKE him swim and work harder at swimming better and... BLETCH all over the van before he gets out for a lesson.
Just this Sunday we had to deal with it.
Church is not a throw-up event.
Restaurants are not a throw-up event. (Usually)
The beach is not a throw-up event.
But the last two times we've gone from church to restaurant lunch to beach? BLETCH (Once in the van after restaurant en route to beach. It was SO BAD. We had to pull over. And this past Sunday? In the restaurant. Good times!
We are church-going Floridians, so this is going to come up again. It is. Sooooo. We either picnic ON the beach from here on out OR don't tell him the beach is part of the day's line-up. We'll see.
There's your five windows into our particular fragile X world. Hopefully they help you remember:
Different not lesser.
Fragile not broken.
If that's all you get out of Fragile X Awareness Month/Day, I'll call that a success.