A La Aspie

Earlier tonight, Ethan missed his orchestra recital. He was SO excited about this recital. He missed it, in the end, because of the band teacher’s failure to follow his 504 plan. I’ve had this post on tap for a few days but I think watching my Aspie kid cry his eyes out the whole way home and then be ok an hour later drove the point a little deeper.

I posted not too long ago about the great success we’ve had in the past few months. That success has continued unbroken for almost two solid months now. Almost long enough to breathe a sigh of relief… but I’m still flinching. I went for a massage this weekend and after the massage, I was talking to a friend about some of the emotional stuff that surfaced and I said “I’m still on the lookout.. I’m still on alert. It could still happen at any time.” But tonight, although I flinched all night, the success remains unbroken.

Tonight, he got dressed for his recital in black pants and a white shirt. A white shirt that looked like he’s worn it about seven times without washing it and which had a hole front and center. I asked him to change the shirt. And then I flinched, ducked and got ready for Meltdown of the Month. It didn’t happen. We had a minor exchange before he was convinced to put on an identical shirt (he has 4 of them - moms of aspies will relate to that!) that was sans-hole. Two months ago, the clean shirt would have meant dragging him to the recital in tears.

He put his shoes on and tied them, quickly, chattering happily about something or other. I winced the whole time. He’s known HOW to tie his shoes since preschool… every day, up until two months ago, we STILL faced the shoe tying debacle that happens invariably every morning before school. He’d try to leave them tied and just shove his feet in ( which messes the shoes up). I’d insist that he untie and tie them. But he didn’t want to tie them because they are too hard to tie… why are they too hard to tie? It’s just tying a shoe… you’ve done it since you were four or five. But it’s shoe tying.. complex hand eye coordination.. too difficult… Lots of anxiety built up around it.. commence meltdown. Religiously.

We drove to the recital, stress building as we went. Irrelevant conversation building to a fevered pitch. I worked him down, worked him down. We made it there without tears. He wanted to wait at the car until I was at the gate and then walk in. We negotiated and he came along.

We got there and found that the note home had contained an inaccurate time and we’d missed the recital. I held my breath and stiffened my back. He didn’t turn and stomp away or sit in the back and scrunch his face up into a death glare like he might have two months ago. He went to his place and held his composure until it was time to leave and then he got into the car and crumbled into tears.

I reassured him over and over and worked him down and comforted and assured him I’d take care of it. A couple of months ago, that would not have worked. He went into the living room to watch tv while I wrote the tediously documented email to the school and copied it to god and everybody. A couple of months ago, he’d be curled up in a ball beating on his bedroom wall - or worse, his head.

Up until two years ago, I was doing all but the school advocacy for Emma, Ryan’s daughter, too, who is also on the spectrum, and at the time, probably not as high functioning. My WHOLE LIFE has sometimes been wrapped up in this. Up until two months ago, every moment of whole weeks. The emotional and mental drain made it very difficult to focus on much else. Every moment was a struggle, emotionally. Practically, every week was filled with details, to do lists, meetings and phone calls. Getting a sitter was out of the question, going places was a trial at best, his father was uninvolved, even combative about it and even close friends kept an arms length understanding about it - leaving me very, very, very alone. It’s left me expecting it, constantly… that dull ache in the background of that grinding drive, driving forward, always pushing, raw and relentless.

And now it’s been two months. He has done amazing. He had a rough day yesterday in school… he’s been really anxious about Ryan popping up for a couple of days, a justifiable reason to be anxious, and it spilled over into school. We talked about it, doubled up on locking the doors and keeping the alarms set, kept Cody in the house, he took an extra Omega 6 and Omega 3 and despite my flinch upon waking, he bounced back and had a stellar day.

And tonight, right now, after all of this, even with all of my flinching, he’s peacefully taking his shower. As frustrated as I am at the school right now, I’m not picking up the pieces of a completely inconsolable, emotionally incoherent child. He cried, he wiped his eyes and he moved on. Like a normal kid. Part of me was all built up to ‘deal with him’ and I didn’t have to. I just had to do the normal mom stuff with maybe a tad bit extra. That’s it.

Tonight, I cried with the frustration of it… seeing my kid in tears over someone else’s inability to follow through is hard. Beating my head up against the brick wall of the school is hard. But I wasn’t dragged through the almost unendurable hours of meltdown until bed time and then the knowledge of invariably picking up again in the morning. I flinched, I cried and then I blinked and relaxed. It’s ok. Reprieve. Room to breathe. Relief.

Also may have been crossposted to my Asperger's Syndrome blog on Trusera.com, a site where people show health related stories. Check it out!