Friday, April 27, 2012

The Peace of Wild Things

IMG_2006 by jenbenjenben

I'm pretty sure this poem was written just for me. Don't tell me otherwise, okay?

The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

Thursday, April 12, 2012

Sleep (ha ha ha *SOB*)

When I was pregnant with Soren, I remember thinking that labor didn't worry me at much as the post-partum period did. Specifically, I was consumed with the whole lack-of-sleep thing. You see, I adore sleep. It is the perfect escape. My idea of a perfect Saturday, for example, was always to get up, have brunch, take the paper to bed, and go back to sleep. Delish.

So it is a special kind of struggle (OK, agony) to have a child who doesn't sleep. Oh, I know, parents always say that their kids don't sleep. But we are in a different realm over here.

I hesitate to give you the details; I don't want to use this as a place to complain about my sweet child. And we are in good company: up to 80% of kids with autism have some sort of sleep issue. But not sleeping is crazy-making. That's how they torture you, after all.

Our sweet son gets up every other night, sometimes every night. And once he's up, he's up. For four, five hours in the middle of the night. He really likes the 1 - 5 A.M shift. And we are up with him, for safety's sake. (Even after kid-proofing, we've seen removal of heating grates, eating carpet shreds, chewing on marbles, chewing up books, and so on. We *need* to be with him.)

And he's wired. Manic. Exhibit A:

Please, please don't give me tips about sleep. We've tried: early bedtime, late bedtime, melatonin, strong drugs, leaving him alone in his room, Epsom salt baths, warm milk, serious talks, driving him in the car, snack, no snack, getting out of bed, staying in bed. Don't even get me started on "sleep hygiene." (Sounds like a Very Special After-School Special.)  But as you can tell from the video, there's just something wired differently in our boy that tells him that 2 A.M. is a great time to be up and do gymnastics on your parents' bed.

It's awful. And yet it's our new normal. I've gotten great knitting done while "sitting up" with Soren. I've read lots of trashy magazines. And I'm learning more and more that there are so many things with kids that we just can't control.

So we think about this. All the time. We talk about it, to whomever is around. We argue about it. (Tip: don't argue with your husband at 3 A.M. about who is getting less sleep. There is no winner.)

And we're trying some new drugs. (And I must say, Grandma Moss is a hero for staying up with Soren when she's here. Bless you, Mom.) We're keeping our fingers crossed. But please forgive me if I need to kvetch with you about sleep issues. It's kind of a big deal around here.

Wednesday, April 4, 2012

Tuesday: a day in the life

Morning rain

Waiting for school to let out

Waiting for therapy to finish 

Gary found some sun

A change in weather

No rain!

Love being outside


Hi, Mama


Monday, April 2, 2012

Not today

I had such plans for a powerful post today. It's Autism Awareness Day, the start of Autism Awareness Month, and we've just received updated prevalence numbers from the CDC on autism (1 in 88 now). I was going to write about what this means, especially for the newly diagnosed children and their families. I was going to write about what our call to action is.

But not today.

Today, I just don't feel like being an advocate. I don't want to raise awareness. I don't want to be the picture of an autism mom. I don't want to schedule and over-schedule my child. I don't want to push him. I don't want to push at an IEP meeting. I don't want to be sleep deprived. I don't want to research therapies. I don't want to deal with insurance, doctors, or medications. I don't want to be held up as a graceful example of special needs parent. I don't want to worry. I really don't want to worry.

Today, I just want to get in my car and drive--alone. Anywhere. Maybe somewhere warm. Mexico, that's it. I want to sit on the beach and drink beer. I want to ruminate only about what color to paint my toenails. I'll stop at Nordstrom and buy four pairs of impractical shoes. Then I'll catch up on what those Real Housewives are doing.

Maybe it was a challenging night, or the fact that Erik's been gone a lot, or because my little guy seems overwhelmed a bit more lately. But today, the autism reality (and its media saturation) is not what I want to think about. Today, I want to escape. I want to forget, just for a little while. I want to be in a place where the only worries are what to wear and what to drink (flip-flops and sangria, I think).

And I know tomorrow I'll put on my cloak of advocacy again. My child deserves that, needs that. But in this hour, I'm just thinking about my beach in Mexico.

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