Fragile X Syndrome is a genetic disorder that we never even heard of until our son was born. FXS is the most common inherited form of intellectual impairment & the number one known single gene cause of autism. I'm here to raise awareneXs and blog our story.
Clouds, May 2010
Saturday, September 28, 2013
fasten your seat belt
About a week ago, on one completely unassuming morning, I was waiting for the van driver to bring H back home. Yes, you read that correctly. I was waiting for Hayden to arrive back home, a short while after he had been picked up to go to school. I would then have to finish getting ready & take him there myself, which would inevitably make me late for work.
So I actually had to sit down & send an email to my boss that morning, explaining why I would not be at the office on time.
Because minutes after H left for school that morning, I was just about to get in the shower when the phone rang. The driver proceeded to tell me that she had to pull over. Apparently Hayden took his seat belt off & would not stay seated. They had not even reached the main road yet, so basically the van was stopped near the foot of our neighborhood which is about a mile away from our house.
Unable to keep going or even turn around since he wasn't buckled in (& obviously wouldn't let her buckle him in), they were basically stuck. She left a message for her boss & was awaiting approval to bring him back home.
There were endless concerns running through my mind at that point...
...so now what? What the hell am I supposed to do? How long are they going to sit there? I'm going down there... am I allowed to go down there? Does she really have to wait to talk to her boss before she can turn around? WTF... What if this keeps happening? He already has a one-on-one Aide when he's in school & now he's going to need one just to get there?! Oh, gosh... I do not even want to begin advocating for that... Oh shit... I need to text his Aide so she knows he's going to be late... What time is it anyway? Well that's great... Now his whole day is going to be thrown off... I can't keep him home... I have to get to work... This sucks I didn't even shower yet & it is already getting so late... His entire schedule today is really going to set him off on the wrong foot at this point... Can I just drive down the hill to go get him myself? Would he even get out of the van? I would have to drive him back to the house though... He would definitely freak out... he would want to go straight to school... I can't drive him to school like this... I have to walk him inside...then I'd have to come back home anyway to get ready for work... I really don't have time for this... Friggin nerve wrecking... are they really just sitting there? Still?!
When the van pulled back in our driveway however many minutes later-- I am not even sure-- there was Hayden of course sitting very calmly in his seat. I am guessing his sudden change in behavior was some sort of defense mechanism. But now that my nerves were slightly settled as he returned home, my only mission was to finish getting ready & get the hell out of the house in record time.
It wasn't until we were finally on our way to the school when the man from the transportation company called (i.e., the driver's boss). He was very anxious & concerned, claiming that the school told him, that I saw the van pulled over on the side of the road with Hayden still inside the vehicle. After I clarified this dangerously misleading statement, & reiterated that I was the one who insisted the van driver bring Hayden home instead of them just sitting there as more & more time passed... I felt like choking someone.
How far back do I go? Because last year was the first year that this transportation company became part of the equation. Prior to that-- for years & years prior to that-- the district used a different transportation company & it was always the same driver. Did we ever have any difficulties before? Yes. Have there been more since this then? Absolutely. Let's start with the fact that Hayden used to get attendance awards up until last year, & after that the only consistency was his tardiness.
Or maybe I should choke the people who accepted the bid from this transportation company? Do I blame them? Because if I am going to blame them, then I ought to blame the Governor. Isn't he the one that started the budget cuts which cost us things like... a Child Study Team (which is now outsourced, & every friggin year we have a new friggin case manager)...
Or do I blame Hayden's special needs? Because if it weren't for his special needs then how could I be affected by any of these exhausting, frustrating circumstances?
Later that day when he arrived home after school, do you want to know what the driver said to me? Well I'll tell you anyway. She picked up a little square-shaped plastic piece for me to see, & said they used it on the way home & that it worked like a charm.
I realized it was something which would prevent him from unbuckling his seat belt. "How do you get it off?" I asked.
"Well I just used a pen," she said, "but I'll need something better."
"Oh, so it can't even come off without using something like that? What if heaven forbid there's an accident?"
She didn't answer right away but I continued, "I just need to think about this & figure out the best way to handle it. I obviously want him to be safe & worry about him not being seated & buckled in, but now I don't know what worries me more..."
That Monday when he was picked up, she showed me that in case of emergency she has a seat belt cutter. I didn't really get a good look at it but I saw it near the steering wheel. Is it even realistic that just anyone would know what that was?
I think it's obvious to say that none of this was making me feel any better. It's been about a week since the incident & so far just the threat of that little plastic piece seems to be keeping him well-behaved, but that's probably not healthy either.
And there I go again wanting to choke someone. (I should probably avoid mirrors).
But alas that is not what happened. Instead I spent the week focusing on the next thing... preparing for my 2nd annual FX talk with Hayden's classmates.
Summary blog to follow soon...
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