Not Sleeping

In my humble albeit exhausted opinion all autism research should focus on sleep and the lack thereof.

Ohmygodohmygodohmygod. There has to be some medication that will keep my child asleep at night. John has been on clonidine for months now and our nights used to look like this:

• medication slipped into a small bowl of yogurt one hour before bed
• one hour later: asleep
• 2 a.m. running and crashing into our bed
• 2:15: asleep until morning

Then about a month ago John started waking up absolutely drenched in sweat, like his body was afire. We'd change his pajama top and put him back to bed. An hour later he would still be awake. Had it stopped working? It seemed to me that the clonidine was now having an adverse effect. I called the neurologist, told him my fears and he said we could start weaning him off of it.

We've halved the dosage and are experiencing manic nights again — just like the good ol' days. He hums in the dark, a new vocal stim. He yells "Downstairs?" and "Mommy's itouch?" while pounding the pillows and pressing his cold feet into my back. He holds his hands tightly over his ears. I strain to hear what he's hearing… a clock ticking, a fan gently whirring…I barely notice it, but it's assaulting his senses here at 4 a.m. in the dark.

With an average of three hours of sleep a night, I am the saddest, angriest, clumsiest, barely functioning ball of nerves. I have zero patience and what feels like zero control over my life. Melatonin is like popping candy for all the good it does these days. Where is all the research on this problem? I can deal with autism, really, but this? This is my kryptonite.

One-of-a-Kind

Here it is May and kindergarten is almost over. I've spent the morning in Sam's classroom helping them get ready for the rising kindergarteners coming tomorrow for orientation. It doesn't feel so long ago that I was bringing Sam last year, the memories are still that sharp.

But what happens when you don't blog as often as you should is that you forget what your reader knows and doesn't know. You forget if you shared all your fears for this year and how some of them came true and how some didn't. You forget if your reader understands, really understands, how grown up he is now — even though he is still my baby.

You forget so much, I forget so much. My life sometimes feels like a series of faded snapshots.

The best thing I did this year was volunteer in his classroom. There's nothing like knowing all of his classmates by name and seeing that quirkiness is a trait that all children possess to a certain degree, not just the spectrum ones. You could say that "neurotypical" is also a spectrum, a discovery both eye-opening and comforting.

I knew that academically Sam would be fine. His areas of interest continue to evolve but he is primarily fascinated with:

1. Weather
2. Seasons
3. Outer space  
4. Earthquakes and other "violent weather"
5. Transportation

He declares, "I don't like fiction, Mom. Is that a fiction book? I only like non-fiction." The other day he told me that two glasses were "congruent." He knows more than his father and me combined.

So no, I knew he'd love school for the learning. My fears were of the quirky and social kind, especially since he is so motivated to be social — would he have friends, would he be happy?

Well, yes and yes I suppose. He moves about the class and seems to be liked by all. He plays with the same couple of kids every day at recess. I've noticed that over time the group changes and I don't know if he's being left out or not — my own, hard memories making me anxious on his behalf. Even though they are 5 and 6, some boys seem more socially astute. I've caught a few rolling their eyes at other kids and sometimes at Sam. It's a slippery slope to teasing and worse.

One day a few weeks ago I picked him up and he had scraped his nose. I asked him what happened and he said, "I was out of control, Mom!" When I asked why, he explained that so-and-so were playing a game at recess and he wanted to play too but he couldn't figure out how to join in and they weren't helping him. Frustrated, he took off running and collided with the playground equipment.

"Mom?" he said, "Sometimes I don't know how to play." I guess he's astute in his own way too.

He is earnest and enthusiastic, loving and sweet, quirky and one-of-a-kind. He's finding his way this year and I'm finding mine too. When I watch him at school, I find sometimes that I'm holding my breath. Guess I should work on letting it out.

New Friends

An ocean of worry delivers me here. I feel anxious, like I do when I feel I'm losing my grip on memory, time, my children. It's an illusion to feel we're ever in control, but it sure feels great when we do. I wouldn't say that I'm tipping in either direction in this moment, but I feel sick with all the memories that have already sailed away, forgotten, while I've been doing what? Living, I suppose.

We all have to do that.

We lost our two senior cats over the last year and after a few months of grieving their absence, we set out, the boys and me, to find two new friends. The old pair never cared for them, and it took a long while to reassure them that not all cats hiss at little boys. We thought about kittens, but instead settled on two young cats — really more dog than feline. They love Sam and John. And I dare say, the boys love them too.