“The night is the hardest time to be alive and 4 a.m. knows all my secrets.” — author Poppy Z. Brite
This week, I was listening to a researcher on NPR talk about how they found that nurses who worked the standard 12-hour shifts were more likely to burn out, more likely to make medical mistakes and more likely to have dissatisfied patients.
Grumpily, I wondered how that 12-hour shift might go on 4 hours of sleep, after years of back-to-back shifts, in your own house, with your own children, and while trying not to snap at the Special Needs World of dozens of people who are trying to help but often dole out more work for you to do.
Sleeplessness is a widespread and critical problem in America. According to the American Academy of Sleep Medicine, about a third of “normal young adults” can be considered too sleepy. The Centers for Disease Control and Prevention has an entire department dedicated to the 70 million Americans who don’t get enough sleep.
Parents of children under the age of 6 are even more likely to be sleep-deprived, with one study of thousands of German parents finding that mothers lost an average of an hour per night compared to pre-pregnancy sleep.
So when I say that parents of disabled children often don’t get enough sleep, maybe some of you will shrug and say that it is common not to get enough sleep.
I have to tell you I was quite surprised at that German study. I had no idea that sleep loss was only one hour for typical parents. When my twins were babies, I usually would not sleep more than 6 hours a day, often in disjointed two-hour chunks due to the need for round-the-clock feeding. Maybe it’s supposed to be one hour lost per baby.
I did know that it was unusual that one of my children has stayed up for longer than 24 hours a few times in his life — the longest was 36 hours when he was 7. Even now at age 11, my children are often each up multiple times in the night. And let’s not forget how many nights I have laid awake fretting over a doctor’s visit or a school meeting or worrying that I’m not doing enough…
My Apple Watch says I am currently averaging less than 7 hours per night. Before kids, my normal was 9 hours.
But I’m just a sample size of one, right? Let’s look at more scientific studies. A 2014 comprehensive review could not determine the average sleep loss of these parent-caregivers but considered it substantial. “…parents of children with complex needs experience sleep deprivation that can be both relentless and draining and affects the parents themselves and their relationships. The degree of sleep deprivation varies by diagnosis, but a key contributing factor is the need for parents to be vigilant at night.”
When adults don’t get the amount of sleep we need, most of us understand — but maybe don’t fully grapple with — the effects. We are grumpier, more prone to mistakes and in more physical pain.
“In otherwise healthy adults, short-term consequences of sleep disruption include increased stress responsivity, somatic pain, reduced quality of life, emotional distress and mood disorders, and cognitive, memory, and performance deficits,” reads a 2017 mega study.
It doesn’t take a lot of imagination to figure out what this means in the lives of real people. Did you give the right amount of that powerful prescription drug to your child, or did you make a hazy mistake? Do you really want to divorce your husband, or are you chronically sleep deprived? Did you really want to bite the head off that teacher or are you at the end of your rope?
Of course this has major daytime consequences for the kids with sleep issues, too. “For adolescents, psychosocial health, school performance, and risk-taking behaviors are impacted by sleep disruption,” reads the NIH literature review. “Behavioral problems and cognitive functioning are associated with sleep disruption in children.”
OK. So what happens when we maintain this state of sleep deprivation for years?
“Long-term consequences of sleep disruption in otherwise healthy individuals include hypertension, dyslipidemia, cardiovascular disease, weight-related issues, metabolic syndrome, type 2 diabetes mellitus, and colorectal cancer,” the 2017 study concludes.
When your child is hospitalized, you might think you’d get a break or that an institution of healing would understand the health-promoting effects of sleep, but it’s even worse. One study found a mean sleep period of just 4.6 hours for parents of in-patient children. The study’s authors urged hospitals to take better care of the sleep needs of their patient’s parents, but anecdotally that still seems to be a rare consideration. Nurses come in at all hours and the foam pads offered to parents are thin and small.
“I have spent nights on those beds, so I know how uncomfortable those beds are.”
That’s Dr. Derek Lam. He’s an ear-nose-throat doctor at Oregon Health & Science University, with a special focus on children with sleep apnea. He sees a lot of children with significant disabilities, including those who need machines to breathe.
“For some of these more medically complicated kids, it can be a 24-hour job taking care of them at home,” Dr. Lam says, adding of the caregivers: “I don’t know how they do it. I don’t know how they get any sleep at night.”
State programs can help, but even when a child is authorized for many hours a day of in-home help, it can be very hard to fill those hours — especially during the current COVID-19 nursing crisis.
“If we could have home nursing care for the families that need it, that would make a huge difference, I think,” Dr. Lam says.
The ENT doc says medical professionals could also be looking more holistically at families.
“It’s easy to focus on the child and not take care of the needs of the parents,” he says. “I think it’s a question that’s really easy to forget as a physician because we’re focusing on the child. I think we could do a better job, but when it matters, we do try to pay attention to that.”
Though Dr. Lam acknowledged that sometimes not much can be done, he noted that certainly nothing can be done to help if no one knows you are not getting enough sleep.
“Families should speak up if they are struggling in that way,” he said.
Need more resources?
But if your problem is that it is not safe to sleep or to sleep deeply, consider sleeping in shifts. You’ll need either a partner, an in-home caregiver, a good friend or an extended family member. Even one night a week can bring you back to the land of the living.
If it is safe for me to sleep, I put myself in a cocoon with ear plugs, an eye shade, a noise machine and ‘do not disturb’ on my devices. In those instances, I often sleep more than 9 hours — but only if my body knows it’s safe to stop being on high alert.
What about you? Do you get enough sleep? Do you have any tips on managing sleep? Share your thoughts in the comments.
Sweet dreams, readers!
Medical Motherhood’s news round up
• From OPB: “New Protactile language emerges in Oregon”
Dave Miller: […]But I’m still wondering when you, I don’t know how old your students might be, but say a 12-year-old kid who comes to you and you’re going to teach them Protactile. I don’t understand where you begin and what the classes are like.
Jelica Nuccio: A DeafBlind child that has sighted and hearing mothers and fathers, the baby is going to be nestled and patted and rubbed and comforted. And the parent’s thinking, “Well, I’m touching my kid by rubbing their back, by burping them, by being in touch with them. So they’re getting touch in their life.”
But when you’re born, you have to learn how people connect through sound. You don’t automatically know that even though you can hear. Hearing is just auditory input. It’s not necessarily meaningful until you associate meaning with it, until it becomes meaningful to other people and they share those meanings with you. And then they teach you from there, from that modality, how to talk and how to harness the language and how to put it together in pieces. Same thing is true with Protactile language.
So touching, there are nuances to touch that people don’t know how to do. And so they’re like, “Yeah, I touch this child.” But they don’t know I, as a DeafBlind person, I play, I eat, I walk, I do all kinds of things. How do I do them? I’m not doing them in a sighted way. And so sighted parents are essentially connecting with their DeafBlind children as if they were sighted because the parents are sighted and that’s the only way that they know how to do things and how to move the through the world.
• From the Annenberg Center for Health Journalism: Is COVID causing developmental delays in kids?
While it’s impossible to pinpoint the causes of Alex’s developmental delays, the pandemic-era concerns voiced by his parents are shared by a growing number of child health experts.
“When parents are depressed or preoccupied like we’ve seen with COVID, they’re not as emotionally available,” said Carol Berkowitz. “It’s not a criticism; it’s the reality.”
• From The Detroit News: “Parents, advocacy group ask federal judge to stop Michigan schools from going virtual”
The Brain Injury Rights Group, a New York-based organization that advocates for children and adults with disabilities, asked U.S. District Court Judge Judith Levy to issue a temporary restraining order to stop schools from closing without the consent of parents of children receiving special education services.
Ann Arbor Public Schools shifted to remote learning this week with plans to return to in-person classes on Monday.
"Since the pandemic's beginning, we have learned that students attending school remotely suffer socially, emotionally, and academically," attorneys for the parents wrote in the filing. "Special education students suffer more so than non-disabled students."
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