3 A.M.

 

“In the dark nights of the soul, it’s always 3 o’clock in the morning.”

I read that F.Scott Fitzgerald quote back in High School and I’ve revisited it many times in the last (gasp!) 15 years: post-messy breakups when I couldn’t get to sleep; as I desperately typed a term paper on Kant into the wee hours of the night; as I lay awake worried about money when Adam and I were both in grad school and had a baby on the way; in the early days of motherhood when I had a lovely, fragile little boy in my arms and I stayed awake to help him sleep; in the brutal post-partum days after my second baby when I was ripe for a confrontation with old ghosts…and many, many, many other long nights.

Still, never, ever, ever has this quote been so fitting as when I’m in the middle of one of Liam’s long Autism-related can’t-go-back-to-sleep nights.

You know the ones I mean.

In our house, a full night of sleep is an unheard of luxury. I know, I know most parents face this too, it’s not just an AU thing, but I think in most cases, sleep issues get better. Right? All my friends with non-AU kids have sleep trained them, the kids can fall back asleep on their own, and they are able to sleep for longer and longer stretches of time.

Not so in our house. Not so in most of the other AU homes I know.

Alarmingly, Liam’s sleep patterns have consistently gotten worse in the last year. It’s driven Adam to the couch and it’s starting to affect Eliot’s sleep (or is that burgeoning AU in Eliot? More on this worry soon). A typical night is: 8:30 pm- Liam asleep. Adults stay up to work on writing, grading, schoolwork from 9-12. 11:30- L. wakes up for water; 1:30 am- Liam wakes up ready to bounce, shout, verbally stim (ahh-ahh-ahh-ahh-ahh-ahh-ahh-ahh) for the next five hours. If I can keep Eliot asleep in this time, then I sing to Liam, read to him, read my own book, watch sleepytime story movies with him on my tablet, or just snuggle him and let him work the crazy out. There are usually a few bites, pinches, kicks, and me crying at some point, just out of sheer exhaustion. If Eliot’s stirring, Adam takes over and stays up with Liam. Sometimes, every few weeks, Liam will fall to sleep quickly. Mostly, however, when we go to bed at midnight or so, we both know that we have an hour or 2 of sleep before the relentless march of parenting an AU child begins again.

It’s hard. It’s really, really, really hard. I mean, we can handle it. Things are better in the morning (thank you coffee!), but with sleep deprivation piled on top of all the other challenges of AU, it’s damn near toppling at times.

Adam and I agree: the scientist or drug company that makes a safe sleep aid for night-waking in AU children will be rich beyond their wildest dreams.

 That’s all we’re asking sometimes, just a little sleep.

Just a little light at three o’clock in the morning.

Words

Words, words, words. I love words. They are my bread and jam. My coffee and cookies.My safe space.My way to connect to you and to the past and the future. They preserve my children. They advocate for those without a voice. They make me a bit of money (just enough to get my hair done each month!)  They make me laugh, cry, dream, cringe, gape, bellow, shiver.

They make me.

This blog is a place for many words and stories and thoughts that come as they will. I will talk about my family, my work, autism, writing, and other things.

I am determined to keep this honest. So, there will be good days and bad days and all the days in between. (Not too much of a diary, I promise. I’ve never ever been good with diaries…despite all my attempts back in the late 80’s).

Today was a good day overall. Here’s something amazing from today: