Clouds, May 2010

Clouds, May 2010

Monday, March 11, 2013

to be continued.

When there are circumstances which make Hayden anxious, I noticed he often gets in a sort of survival mode (if you will) until one day things seems to catch up with him. His behavior will become inexplicably difficult, seemingly out of nowhere, until I stop to think about it & realize perhaps the dust just settled. Recent events are finished simmering & he's able to "feel" it all.

Friday evening the school van driver contacted me to tell us that Thursday was her last day... as in the day before. Never mind the fact that no one from the school or the transportation company ever contacted us. That is a whole separate issue. Yes Friday was an unexpected snow day, but here this person who didn't even work for them anymore managed to get in touch with me... so...

Anyway, as far as the now-former van driver... she was not let go. Her husband unfortunately was, so she immediately began to look for a better paying job to compensate for their loss of income. And luckily for them she found a new job rather quickly. I learned that the older gentleman who had been filling in for her when she was out at one point, would resume the route.

He seems nice, & I do like his scally cap by the way, but he doesn't say much. I am not sure what his native language is but based on the way he appears to think intently before speaking, & he sort of extends his right hand like he's trying to find the words but needs a minute... I don't believe he uses English very often.

His accent is thick & when he does speak, Hayden looks as though he doesn't quite understand. The first time he drove Hayden to school he turned the wrong way down the one-way part of our neighborhood & I kept imagining what Hayden was thinking.

This morning Hayden did not touch his sacred breakfast & by the time he had to leave, he said something about "hate concert" & not wanting to go to school.

Today also happens to be rehearsal for the combined 1st & 2nd Grade Concert. (Which he does not actually hate.) I hope that it all works out & Hayden is able to stand up there with the other kids & participate. It's not to say that anything will change if he doesn't, but if he does I know he would enjoy it.

They have been practicing in music class for a number of weeks now, & the actual Concert is taking place on Wednesday evening. The process of getting Hayden back to the school that night, long after he has his dinner & right about the time he should be getting his bath, could present a challenge. So I am glad that he has this rehearsal today, because then he won't feel like he missed the concert if Wednesday doesn't work out.

That too-- the idea of missing it-- would bother him just as much. Especially if he wasn't quite able to "organize" himself to pull through it.

So, here we are. The week of the new driver & his very first school concert.

Last week when the teacher sent home a note that I could be there for the rehearsal, just in case Hayden isn't there Wednesday night, I was initially taken back a bit. I felt that wrath building up inside of me... that almost defensive motherly wrath of protection. How dare they suggest he might not be there! Of course he will be there! We think. We'll try...

When I took a moment to allow my emotions to subside, I felt silly for feeling that way. I felt thankful that they thought of me, & hopeful that this week goes well.

I keep reiterating that detail to myself,
that nothing will change if he doesn't participate. I would never be disappointed. But if he does participate, I just know he would enjoy it.

And oh my goodness his mother would, too-- I would no doubt cry with pride.

(To Be Continued...)

Update One (of Two?)

I arrived at the school just as the kids were entering the all-purpose room, so I scurried into the front office afraid Hayden might spot me.

I was kneeling behind one of the desks & when I saw his teacher I moved to the other side of the cabinets for safety, since they're taller at countertop height.

It was silly but the secretaries were giggling along with me & then we decided I should hide in the closet. We left the door slightly ajar & I waited until the coast was clear.

I peeked around the doorway into the hall & near the back of the all-purpose room I noticed Hayden sitting with his Aide. The concert begins with the second graders, & then the first graders do their songs next, & then both grades sing together. So at that point in time it was perfectly appropriate for Hayden to be seated in the back, because that's where the other first graders were... just sitting, watching the second graders, & waiting for their turn.

But before I went in, one of his teacher's approached me & said he was having a rough morning. He was apparently so anxious over the rehearsal that he had gotten sick earlier. Then when it was time to follow single-file down the halls to the all-purpose room, he was crying. In that moment, the beastly fragile x anxiety was stronger than my first grader. My first grader who loves to be around other kids. Who loves to do things that make people proud of him.

I entered the all-purpose room & sat on the floor beside Hayden & his Aide. He was glad to see me but not quite as glad as he usually is. He seemed withdrawn, but I kissed him near his temple & told him I was there to hear the kids sing. I was careful not to phrase my visit as an expectation being placed on him.

When it was time for the first graders to assemble on the risers, he became upset again. It was probably an additional confusion to him that they weren't just walking up to the stage... but rather exiting the room to go around & enter from the kitchen. In other words, to properly enter in true dress-rehearsal fashion, which in this case was stage right. I am sure walking through there & smelling lunch cooking, which would begin following rehearsal, was not helping his anxiety-nausea one bit.

Ultimately his Aide was able to lead him to the very edge of the risers & that is where they sat. He was up there, but never actually stood with the others. I saw her whispering some of the songs in his ear & he sat beside her a bit sullen-faced, but calmer.

That was as far as he got but I know that was a substantial accomplishment, especially considering where they started this morning. As far as Wednesday, we will play it by ear.

I know I have had a number of years to let this diagnosis simmer, & I know H is a fantastic kid. But some days I positively hate fragile x & truthfully wish this damn syndrome simply didn't exist.

We're going to fight you. Do you know that? Hayden still made it up to the front of the room with the other kids. You're never going to win, fragile x. Even if Hayden never sings in a concert, although I believe he will, it doesn't change the fact that we are growing stronger than you... because you, fragile x, are breakable by name. For us, there is always next time. For you, there is only a cure in your future.
Even if it's not on Wednesday, this will be continued. 

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