Last night, around 2am, as a wide awake and obviously bored Toby lay on his bed kicking the wall I listened to the thuds from across the house and thought - it's time to put high locks on the doors.
Who me? Cause problems? Never!
Toby is usually a good sleeper, but for the past two weeks he has been falling asleep around his usual time of 8pm and then waking up between midnight and two am and staying awake for two to three hours before crashing again and sleeping through till late morning. When he wakes up he usually comes into my room, up to my side of the bed, and says, "Mommy! Mommy Wake Up!" as though he's excited to announce that our middle-of-the-night secret playtime has arrived, so let's get to it!
I do not share his enthusiasm.
Instead I get up, grab his hand, and march him back to his bed. Sometimes I crawl in with him and cuddle for a bit, sometimes I just pull up his covers and mumble a grumpy, "It's night night time. Stay in bed."
I usually get up one or two more times throughout the course of his nighttime party either because he is getting so loud playing in his room I worry he'll wake his brothers or because he's come back out for me. The rest of the time I try to stay in bed, ignore him, and sleep. Kevin is a master at this. Me? Notsomuch.
I'm tired. I should sleep.
But...
What if Toby got into the kitchen and uh, decided to start cooking?
What if he went in the garage to check on the dog and then well, he's in the garage. The garage that stores saws and ant killer and all sorts of other potentially child endangering things.
What if he goes outside?
A friend from the Fragile X community recently posted on facebook that her FX son was kind enough to show her he can now do the locks of their front foor. He showed her this because she entered an empty room with a front door left wide open. Luckily he'd just gone to the neighbor's, but...
whatifwhatifwhatifwhatifwhatifwhatifwhatifwhatifwhatifwhatif
Toby will be four this month. He's tall. He drops clearer, fuller sentences more and more often. He knows his shapes, colors, and letters and sometimes he'll even comply with telling you what he knows. He's growing more clever. Capable of opening locks clever.
He's never done any of the above maybe only because he's never been interested in any of the above. But... whatif.
We are in the process of planning our second visit to a Fragile X clinic with Toby. Right now it looks like we'll head down on his birthday - May 23rd. It will be an expensive day for us because (long story short) we pay every cent of it out of pocket, but we haven't been down since he was 18 months old and as he is older and closer to "real" school age we'd like a little more direction in devising his plan. Also, we're ready to start the meds conversation.
And the school year is winding down. We're about one month out of Toby finishing his first school experience - every day ESE pre-school in the afternoon class. A school year that, for Toby, began in October after everyone on the IEP team agreed that a few appointments of speech and OT a week weren't cutting it. A school year that started with much anxiety throw-up and a nervous stomach causing diaper blow-outs even though he was heading off to a class with only three other little boys.
Get in the van and go to school you say? No, I'm pretty sure I can get past you with my ninja moves.
Now instead of refusing to get out of the van and throwing up, he rushes off to greet one of his nine other classmates (including two girls!). Now he's potty trained (with your typical Fragile X caveats) and 9 days out of 10 comes home in the same clothes he left the house in. Now he's used to structure and demands so he's ready for next year - the full day ESE pre-school class.
Oh ok. "I coming. I coming!"
But in between?
Nothing.
So I'm sucking up the fact we are going to have shell out some serious cash to keep him in services this summer. Last summer it wasn't even an option because we traveled so much. Between trips I think we managed to fit in three or four speech and OT appointments. Over the entire summer. This year it has to be different. As he gets older the gap between his capabilities and his peers widens.
I have to remind myself this - that these gaps and tests and measurements mean something to someone somewhere. I have to make the concerted effort to be proactive because, well, I adore Toby as he is. Kevin adores Toby as he is. Kaden and Blue seemingly adore Toby as he is.
He's incredible fun and I'm happy for him to be his own unique and quirky version of what it means to be human.
But... I'm his mom. Biased. (Deluded?) And where I may be less interested in him keeping someone else's test-established "pace," I know it is important his world be opened, opportunities presented, and Toby brought forth at his best and most engaged.
When he is so anxious he cannot simply play on a playground with his peers - this is not bringing Toby forth at his best and most engaged. Usually he can, but sometimes he can't and I have a scratch on my arm from last week to prove it.
Yesterday I watched my friends son, a boy only two months older than Toby, return magnetic building pieces to their box. It dawned on me that Toby couldn't do this simple task - not because it would be physically too hard and not because he wouldn't grasp the concept of cleaning up and putting something away. Toby wouldn't be able to do it because there were so many pieces. He would put one or two pieces away then be overcome with the impulse to throw the box in the air. Or he would put a few more pieces away and then madly shove around the remaining pieces across the room, the sheer number of them an overwhelming presence. Yup, kinda weird. But that's just Toby, shrugs this mom. Except... I know we can expect more. Hand over hand... accomplishing tasks until they are rote and absolutely not overwhelming no matter the number of pieces.
Oh and I kinda have to admit, Toby wouldn't be able to do it because it isn't expected.
He's uh, maybe a wee bit babied.
What if he weren't?
And what if there's something medical to soften the distracting buzz that is Toby's brain roaring through life without the white noise filter we neuro-typicals take for granted? I imagine tasks would prove less taxing.
Teeth brushing was a near impossible task, but it has become an accepted part of the routine because we have just that - a routine. Mommy gets to brush his teeth first while counting (very slowly) to ten. He knows the end is coming at the 10 count and he can wait that out. Then it gets to be his turn. Every time the same. What was once a problem now works fine. Expectation met.
It's time to raise the expectations. Toby can be the baby of the family, without being treated like a baby.
It's time to suck up that his "plan" may cost us more money.
It's time to see where medicine can fit into the picture of all of the above.
And so... we're heading to Miami. I'm weighing the pros and cons of a few different summer camps and crunching the numbers of having him enrolled somewhere at least a few days EVERY WEEK through the summer.
Whatever is around this corner is a little scarier, a little harder, but also, possibly, a whole lot better?
We'll be mindful of the necessary precautions as Toby's capabilities grow (high locks!), but it's time to be proactive in getting to whatever is next.
Yawn. Just as soon as I go get some caffeine.
That! Grin! (Always up to no good)
