Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #3: The Health Issue). Click here to download the full magazine.
In 1949 the Geneva Convention condemned sleep deprivation as a cruel and illegal form of torture. Right up there with waterboarding and starvation, it will cause all sorts of physical and mental damage. And crankiness… so much crankiness.
My oldest daughter settled into a sleep schedule with the greatest of ease. By six weeks she was sleeping through the night. Naturally, I chalked it up to superior parenting skills on my part, smug in the way only a first-time parent with an easy baby can be. I had Opinions. Theories and Opinions and a list of the Best Books to be read on the topic.
When her sister came along two years later, she put a dent in my confidence. She refused to sleep in her crib. At all. Or in the bed beside me - something we swore we’d never do, but in our exhaustion resorted to trying. The only place she would fall asleep, and stay asleep, was in her infant car seat. We used to strap her in and swing her back and forth through the air with all our might. If the Olympics had added an infant tossing event, we would have been serious contenders. By eight months old, we were putting her car seat INTO her crib each night, and eventually she began to sleep like a normal baby. And not a moment too soon, as the child we had affectionately dubbed “Buddha Baby” was far too chubby to swing through the air anymore. My strong-willed second child took the all air out of my smug.
But it was our third daughter who really taught me the meaning of exhaustion. Not right away; in fact, our initial trouble with her was excessive sleepiness. It wasn’t Becca’s diagnosis of Down syndrome, but persistent jaundice that kept her in the special care nursery those first three weeks. She just couldn’t wake up long enough to eat. Breastfeeding was not happening either, because she lacked the strength. Each mealtime would begin with us stripping her down to her diaper and callously wiping her with a cold cloth… poor little peanut. And still she would drift off after only a few ounces. We had to add a booster supplement to her breast milk just to help her gain weight.
The next three years were a constant struggle to get her to consume enough calories to thrive. But she was adorable, easy-going and slept more than any of my other kids. It wasn’t until Grade 2 that she was able to make it through an entire school day; until then, I picked her up early each day for her afternoon nap.
Most children are finished with their afternoon nap by age two or three, so our pediatrician suspected that her quality of sleep might not be adequate. Sleep apnea is a very common problem for children with Down syndrome, due to a crowded upper airway. The treatment is removal of tonsils and/or adenoids, and if that doesn’t work, the use of a CPAP machine. We were referred for a sleep study to get to the bottom of it.
The polysomnographic (PSG) evaluation started with a questionnaire and examination by a respiratory doctor, and then a few weeks later Becca and I trekked out to Children’s Hospital for the night. By now, my easygoing baby had grown into a feisty preschooler, and she had absolutely no intention of cooperating with the strange lady in blue hospital scrubs. Despite the comforting presence of her very own pillow and her favourite tattered teddy, this was NOT her room and NOT her bed, and putting stickers on her arms, legs and head was NOT her idea of a good time. In the end we waited until she had fallen asleep to put the band around her chest and stick the sensors on with a thick putty. Several times she woke up and pulled them off, and we’d wait until she fell back asleep to put them on again. She eventually slept for a long enough stretch to get the results we needed.
Our next appointment was an extended Q&A session with our charming sleep specialist. Dr. Ipsiroglu is one of those rare professionals that seems unrushed, like he has all the time in the world to get to know his little patient and figure her out. The sleep study results showed no sign of apnea, but clearly something was going on. It turns out that Becca, myself and both her sisters have a hereditary form of Restless Legs Syndrome (Willis-Ekbom Disease). The brain creates a sense of discomfort when legs are kept still, making it hard to fall and/or stay asleep. The doctor prescribed an iron supplement, as well as plenty of exercise and fresh air.
At this point we’d filled out checklists, sleep logs, and answered so many probing questions about our bedtime routines that I felt like a bug under a microscope. A diagnosis felt like a gift. A really crappy gift that I’d love to return, but at least it explained our ever-sleepy Becca, not to mention my own insomniac tendencies. And we were finally done with it. Or so I thought.
Fast forward about a decade - through the nightmares of childhood cancer, leg surgery, and puberty. Becca had a rough few years, to say the least. We added an autism diagnosis to her list, which has helped us understand her and her behaviour much better. Her cancer is in remission, her legs are straightened out, and she’s settled firmly into adolescence. But her sleep is worse than ever.
On a good night she’s up at least three or four times; on a bad night it can be six or more. Lack of quality sleep affects emotional stability, the ability to learn and remember, fine and gross motor skills, alertness, immunity to illness, and can even cause premature aging. Which is why I feel about 87-years-old most days.
Some nights she comes into our room, puts her nose a millimeter away from mine and stares silently until I wake up. It’s as creepy as it sounds. She’s been known to cover her dad’s mouth and nose until he wakes up gasping for air. Other nights she employs the poke-and-whine method: Mom-Mom-Mom-Mom-Mom-MOOOOOOOOOMMMMM! If we lock our door, or hers, she’ll pound on it and throw her body at it and scream until everyone in the family (and likely in our townhouse complex) is thoroughly awake. And, since it’s the question we get most often, she can keep it up for hours. The word in the autism community is “perseveration,” and it’s her super-power: she is obsessively persistent.
Instead, we clamber dead-eyed out of bed and run through her going-back-to-bed routine over and over again. “It’s bedtime, time to go back to sleep.” We tuck her in, sing her a lullaby, and promise to tell her little brother that he’s not allowed in her room. No, she can’t have another drink of milk until morning and yes, she has school tomorrow, and goodnight. “GOODNIGHT. Yes, I love you. For Pete’s sake, just go to sleep!” Rinse and repeat until she’s quiet. I take the first shift, until 3 a.m.; Dad has 3 a.m. on. She’s up for the day by 5 a.m.
She loves to wander the house at night. Strange things are done for midnight fun in our house. One night we woke up to the sound of giggling, only to find Becca and her little brother, TV blaring at full volume, stripped down to their pull ups, soup spoons in hand, preparing to share a bowl full of Flintstones vitamins. Childproof does not equal Becca-proof, as we have learned after many rounds of child locks and high cupboards and hiding treats.
It’s not all naked drug parties, either. Her signature move is to eat an entire carton of ice cream, leaving the empty box in the freezer with only a spoon at the bottom, as if to taunt us. Since she’s lactose intolerant and not toilet-trained, the consequences of this binge are usually… quite… unpleasant.
Remote controls often go missing, as do school supplies, toys, charging cords and occasionally a shoe. She likes to hide things, then forgets where she put them. Our heating vents were stuffed full of small items she managed to fit through the holes. When she figured out the deadbolt on the front door, she took it upon herself to trot down the block in her nightgown and fill the mailbox with “letters” – mom yelling behind her.
The scariest moment thus far has been the night she stuffed her brother’s pictures and school papers into the oven (I’m not sure what he’d done to annoy her). She pushed some buttons and managed to turn the oven light on. I still have visions of a housefire if she had hit “Bake” instead.
Safety is our biggest concern. It overrides all normal parental boundaries, something typical parents often find shocking. But our little Houdini is a problem solver, so our systems are constantly evolving. We had rigged up a sleep tent to keep her safely in bed at one point (with liberal use of sewing supplies, superglue, and safety pins), but she hid my nail scissors under her pillow and cut it to shreds. At this point we have an extra high baby gate installed at the top of the stairs, reinforced by 2x2s and locked with a combination bike lock each night. This way she has access to the bathroom and our room, but nothing that can cause irreparable harm.
My husband can’t resist posting the latest hilarious Becca escapade on Facebook, and we do laugh – so much. But it’s not really that funny in the middle of the night, or the next day when we have to pull over to take a nap while doing school drop-offs, lest we fall asleep at the wheel. Nor is it good for her, for us, or the rest of the family. Year upon year of sleep deprivation takes a toll behaviourally, cognitively and health-wise – for all of us.
I could write a book on everything we’ve learned about proper sleep hygiene (that’s what the fancy professionals call bedtime habits). Fresh air and exercise during the day, then a consistent routine of calming activities before a set bedtime in a quiet, cool, dark room. The longer we struggle in this area, the more convinced I am that it is a crucial need. When sleep improves, everything improves – it is more powerful than all the other therapeutic, educational and medical interventions we have access to.
We have tried All. The. Things. We have seen doctors and psychiatrists and behavioural consultants and sleep specialists. We have done another round of sleep studies and appointments and tried a long list of drugs. We have tried suggestions from family and friends and social media and strangers. Most recently, we have ordered a very expensive Safety Sleeper Tent especially designed for youth with autism, thanks to an extremely generous family member.
I wish I could say we found a magic cure for sleep issues: that one special technique that made all the difference. But life is not that simple, especially for those of us who have children with developmental disabilities. Some days are pure survival mode, and I’ve stopped beating myself up about that. Because that’s all I’ve got in me. Over the years, we’ve found a hundred little things that work for us, or work for a little while at least, and we just keep on trying.
That’s all good parenting is, in the end: loving our kids and trying our best.