Monday, January 12, 2015

The Importance of Routine

Its 9:30am. Caiden is eating breakfast right now. Scrambled eggs, toast and a banana - his favorite. Winnie the Pooh is on, and he's laughing at all his regular spots. Eeyore bounching down a hill is as hilarious today as it was yesterday, and the day before. The poor donkey's melancholy is something I'm all too familiar with.

Just a half hour ago, I was sobbing in the kitchen over a pan of eggs, and not because I'd realized I had forgotten to add cheese to make it just the way he likes it.

Ten minutes before that, we were at therapy.


Caiden has gone months without a serious meltdown. Even through the holidays and the major schedule changes, he didn't have a single one. Sure, there are plenty of harmless tantrums, but its been a while since he had one of his bad ones. The hour long (plus) ones with blood curdling screams, gagging, hitting... the whole nine yards.

He had one this morning. At therapy. After being there barely five minutes. His regular physical therapist wasn't going to be there today, so we were asked to come in a little early so that the other PT could see him and avoid a scheduling conflict. Sure, no big deal.

But I messed up. I was under the impression that he would still be having speech and OT first, and then see the other PT. They turned it around. PT was scheduled first this morning, and with a different person. Big, BIG mistake. He cannot do PT first.

Caiden, understandably, lost it. For twenty minutes.

And then mommy did too.

We've been dealing with these meltdowns for almost a year. They started shortly after he lost his speech. Almost a year, and I still have no idea how to help my son. All I can do is try to make sure he doesn't hurt himself and remind him to breathe, which of course he doesn't understand.

Its horrible. Heart breaking. Especially when surrounded by people who want to and are trying to help, and even they give up and just watch. I would rather deal with HELLP all over again than have to watch him struggle, unable to calm him.

Its days like these that I hate autism. Mostly I hate it for taking away his voice, for instilling a twisted sort of fear in me I never knew before, but today I hate it for taking away the spontaneity in life. He will never get bored of his routine, he will never long for change, he may never find joy in adventure. I often wonder if we'll be able to take him to a park this summer. Will the change in routine be too much for him? Will he be able to adapt to daycare or preschool when he goes?

He was fine as soon as he was buckled in the car, his routine back in order. And so we sit here doing the usual, him eating breakfast like this morning's meltdown didn't happen, and me writing and wondering, and trying to hold myself together.

"Do you want to take him home? We can try again tomorrow."

Tomorrow we'll be back at therapy. His regular PT will be there, and he'll see her after he sees his OT and speech therapist. It'll be just like any other day. He might get mad, but we'll make it through the whole appointment. He'll go down the stairs on his own, and we'll clap for him. He'll use his signs, and we'll encourage him. He and his therapists will forget about this morning.

I'll try too, but I'll remember it. I'll remember to double check the next time I schedule something. I'll remember when one of our doctors asks how he's been doing. I'll remember when I still won't know how to help him when he has another.

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