Perchance to Sleep: The Life Of An Autism Spectrum Disorder Mom

Taken from Autism Digest  which is located    HERE.

Writer Ralph Waldo Emerson once remarked, “There was never a child so lovely, but his mother was glad to get him to sleep.” My son Liam, a four-year-old with autism spectrum disorder (ASD), is indeed a lovely child, but I heartily agree with Emerson: I’m always delighted when Liam settles into sleep.

Of all the ups and downs of raising a child with ASD, it’s the sleep deprivation that wears on me the most. I love sleep (being the oldest of 10 kids, I learned from an early age to sleep through almost anything); but, because Liam’s an insomniac, I haven’t slept through the night in five years. How can I expect my son to properly learn and develop when he’s not getting enough rest? How can I help him fall asleep and stay asleep?

These questions have haunted me for years, and I’ve found that the best I can do is implement consistent strategies that help Liam and everyone else in our house get as much sleep as possible. It’s an art more than a science but produces some livable results.

For Liam, falling asleep used to be the biggest issue. At two, like many toddlers at bedtime, he would wiggle, snuggle, dance, prance, babble, and do pretty much anything to stay awake. In Liam’s early days, bedtime took about three hours. To cope, I bought an e-reader, I made my peace with my whole evening going toward getting him to sleep, and my husband Adam and I traded off as needed. On the advice of many professionals, we also tried a disastrous stint with the cry-it-out method; we made elaborate baby-gate barricades (which Liam quickly learned to scale); and we tested many other methods in between. Ultimately, it was the consistent enactment of a simple bedtime routine that has made the process of putting Liam to sleep short and relatively painless (unless he’s in a biting/pinching phase).

Here’s a typical night in our house:
• 6:15 pm: After a full day of therapy, sensory play, running, swinging, gymnastics, swimming, and other run-his-energy-down activities, Liam takes a dose of melatonin in a teaspoon of jelly. This helps immensely with his initial falling asleep.
• 6:20 pm: Liam takes a bath, brushes his teeth, and heads to bed.
• 6:45 pm: Liam settles on his mattress (he sleeps on a mattress on the floor because his incessant bed jumping has broken two beds frames in the last year). Then, I recite two books and sing him one song. I never deviate from the books or song because they are what signal to him that it’s bedtime. (And, yes, I wonder sometimes if I’ll still be reciting Goodnight Moon to him when he’s 10).
• 7:00 pm: Liam is asleep, and Adam and I settle into a working night.
• 11:00 pm – 12:00 am: Just as Adam and I are almost asleep, chatter and laughter erupt from Liam’s room.
• 12:00 am – 6:00 am: We rush to give Liam a drink of water, a quick hug, and hope that he will settle back into sleep. Most nights, however, once Liam sleeps about five hours, he’s then up for four or five more.

So, on the downside, Liam averages only about six hours of sleep a night and it’s a good night if Adam and I each get three hours of mostly uninterrupted sleep. On the upside, we have figured out how to get Liam to fall asleep initially, and that’s progress. It’s small progress, but it’s progress. As we work on helping him stay asleep, we hope that consistency will again do the trick.

In the meantime, we’ve discovered some strategies for sanity in sleep-deprived times:

Don’t Be a Martyr
I have this bad habit of channeling supermom, and I tried to do all of Liam’s night care alone. This left me cranky, sad, and utterly spent for the demands of the next day. Now, Adam and I switch every hour or so just to break up the care and get a bit of rest.

Nap Like It’s PreK
During the day, when our work and childcare schedules allow, we switch off taking naps. Liam no longer naps, but even just a 15-minute power nap helps keep the adults in our house going.

Change Your Perspective
Perhaps a full night’s sleep is overrated? I would say no, but recently, a friend sent me an intriguing article from Psychology Today. The author notes, “Previous to the mid-1800s, many Americans…would fall asleep around dusk, wake up a few hours later for a couple hours, and then sleep for a few more hours before waking around sunrise. Or, they would sleep for a few hours at night and a few more during the day” (Wolf-Meyer 2012). So, maybe Liam’s not an insomniac, maybe he’s just more of a nineteenth-century sort of sleeper. It helps me to think of it this way because it shows me that even so-called normal sleep has only been normal for a few hundred years.

On this same note of perspective shift, Adam told me a few days ago: “Sleep is no longer an entitlement; it’s a gift. Now that I see it like that, I’m happy for whatever small rest I get.”

Take Care of You
I know how hard it is to follow this advice, but I think it’s worth it. I rarely find time for the gym or a hair appointment. At least once a month, however, I hire a babysitter and take a few hours to nap, get some exercise, go to a museum, or read a book in a coffee shop. It’s not much, but it’s something just for me. Sometimes that’s as refreshing as a full night of sleep.

So I say to you all, good night, good luck, and we’d love to hear from you. Share your ASD sleep stories and strategies with us by commenting on this blog.

Reference
Wolf-Meyer, M., “How Natural Is Human Sleep? Coming to Terms with American Expectations of Normal Sleep,” Day In, Day Out, Psychology Today, October 30, 2012.

BIO

Jamie Pacton, MA, is a writer, professor, and mother to two young boys (one who is on the spectrum). She is The Early Years columnist for Autism Asperger’s Digest. Visit her website at www.jamiepacton.com.

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