Sleep Issues in Children with Disabilities
“We had a rough night" — the phrase every parent knows all too well. When it comes to sleep, all kids have some trouble. But if you have a child with disabilities and additional needs, bedtime can be a nightmare. This is because children with disabilities are at an increased risk of having trouble with sleep, whether the challenge is getting to sleep, staying asleep, episodes that interfere with sleep, or challenges such as sleep apnea. Since sleep is such a huge topic for families, we’ve teamed up with sleep specialists, psychologists, and other parents to dive into your biggest sleep challenges — from bedtime battles to middle-of-the-night wakings — and get real, practical solutions that actually work. Whether you're dealing with newborn sleep, trying to get your toddler to stay in bed, or managing a teenager who doesn’t want to go to sleep, we've got you covered.
We spoke to some experts to help us answer our burning sleep questions, including Gary S. Feldman, MD, medical director of Stramski Children’s Developmental Center at Miller Children's & Women's Hospital Long Beach; John Garcia, MD, sleep medicine physician at Gillette Children’s Hospital; Doreen Samelson, EdD, MSCP, licensed clinical psychologist and chief clinical officer at the Catalight Foundation; and Vivian Wang, PsyD, licensed psychologist at CARE-LA.
Why do kids with disabilities have so many sleep issues?
When it comes to just how much sleep kids need, according to the National Institute of Health, “Babies initially sleep as much as 16 to 18 hours per day, which may boost growth and development (especially of the brain). School-age children and teens on average need about 9.5 hours of sleep per night.” While many children experience some difficulties with sleeping now and then, sleep issues are more prevalent in children and youth with disabilities.
For example, while studies show that up to 50% of children will experience a sleep problem, the percentages are higher in kids with disabilities. For example, percentages for sleep problems are as high as 80% for kids with autism, intellectual disabilities, Down syndrome, cerebral palsy, and ADHD. As Dr. Wang explains, “Every kid is different and every kid's condition is very different. So it's really hard to say that a certain diagnosis is going to be the particular issue because every kid is going to be themselves, and that's something cool about them, but also it's something that's frustrating for parents. There's no one magic pill for sleep issues.”
There are a few things to consider when exploring why our kids struggle with sleep. As Dr. Feldman explains, “It's really a very broad and surreal combination of what's going on in the brain. What are the effects of their condition on the environment? And how is the environment in turn affecting the sense of well being, in terms of anxiety? And then, of course, some conditions have physical attributes that will predispose [kids] to having difficulties with sleeping.”
Let’s explore a few underlying causes:
Sleep and the body
Why do kids with disabilities have so many sleep issues? Dr. Feldman tells us, “The short answer is because they have disabilities, and those disabilities invariably are linked to the brain.” For example, a majority of individuals with autism have sleep problems, he tells us, whether that’s difficulty falling asleep, staying asleep, or not sleeping enough. “That's inherent in the condition of autism; it's a neurobiological brain disorder, and part of that brain disorder involves sleep.”
But beyond the brain, many other systems in the body can contribute to sleep issues. Breathing, for example. Dr. Feldman tells us that kids with certain disabilities, such as Down syndrome, are at risk of having breathing problems because of their facial anatomy and low muscle tone, which makes them more predisposed to having obstructive sleep apnea: “So they don't sleep well and they're constantly waking up because they're struggling to breathe, and that results in them flipping and flopping and sitting up and changing position, and then not sleeping well and then having problems in the day because they just didn't sleep very well, so they can have behavioral problems.”
Dr. Garcia explains, “If you want to think like a physician, start thinking in systems. It just gives you a way, a language, to organize.” He explains some of those systems, and how they’re related to sleep:
Upper airways: “One step down from [the brain] is the upper airway, a big player in people with neurodevelopmental disabilities, because if you have low tone, your tongue doesn't stay in your mouth. So the upper airway is really an important part of our story here. People with too much tone then are not able to coordinate the multitasking that happens in the upper airway. So things like obstructive sleep apnea are much more prevalent in people with cerebral palsy than in the general population. And if you had seizures and cerebral palsy, because seizures are a measure of the severity of the cerebral palsy, then you get even more difficulties with obstructive sleep apnea.”
Lungs: “Then a little bit further down, you've got the lungs. Some kids have scoliosis, and the way that the lungs are opened and closed is impaired because they just don't have the leverage. Scoliosis mechanically gets in the way of taking a big breath in and exhaling carbon dioxide out. So if you don't exhale enough carbon dioxide, we call that hypoventilation, which is just a fancy word that means shallow breathing.”
Limbs: “As we continue to work our way down the body, we come down to the limbs, and I see lots of people with tone difficulties, spasms and difficulties with muscle aches. My personal contribution to this area is in sorting out which kids have restless leg syndrome, which is a separate diagnosis and very sleep-related. It's the only one where people actually want to move their legs because it relieves the discomfort temporarily.”
Genetics
Genetics can play a role in how sleep manifests in kids. As the NIH explains, “Scientists have identified several genes involved with sleep and sleep disorders, including genes that control the activity of neurons… Scientists have found that different genes are linked to sleep disorders, such as… familial advanced sleep-phase disorder, narcolepsy, and restless legs syndrome.” With Smith-Magenis syndrome (SMS), for example, “Kids just don't sleep and they sleep at the wrong time,” Dr. Feldman says. “So because their brains are producing melatonin at the wrong time, in the day and not at night, they have a tendency to kind of switch their cycle and can be up all night. There are many genetic conditions where sleep is associated with dysregulated sleep cycles. Kids with Down syndrome, for example, have a lot of things that could affect sleep, such as emotional dysregulation, high levels of anxiety, and/or high incidences of autism. So for all those reasons, they can have problems with either falling asleep or staying asleep.”
Medication
Studies have shown that medication and treatment regimens can affect sleep as a side effect, including both over the counter and prescription medications used to treat chronic medical conditions or neurodevelopmental disabilities. For example, in a 2021 article in Frontiers in Pediatrics, the authors stated, “Children taking GI medication had higher sleep anxiety than children not taking GI medication. GI problems and anxiety have both previously been associated with sleep disturbance.” ADHD medication or other types of stimulant medications can also cause insomnia. More on how medication can be used to help sleep later.
Sensory challenges
Sensory sensitivities have also been shown to affect sleep. This can include sensitivity to light in the room or from a window, sounds from outside, or the feel of a blanket, pillow, or bed. Children diagnosed with a primary sensory condition have been reported to have higher daytime sleepiness and longer night waking duration than children without sensory conditions, which means that as we are exploring sleep challenges, sensory challenges should be considered co-occurring conditions. Some studies have even shown that many sleep challenges in children with autism are a result of sensory issues, and that “heightened sensory perception in toddlers with autism predicts sleep problems at around age 7.”
Behavior and routine
Beyond anything physical or medical, behavior is another key ingredient for creating sleep challenges. This involves things like routine and any changes in routine. While almost all kids struggle with these changes, kids with disabilities often have a more difficult time with changes and transition. For example, Dr. Feldman explains that for individuals with autism who are routine-dependent, any changes to the routine may disrupt a sleep schedule, and they may have difficulties falling asleep. And keeping to routines can be hard when we have summer and winter vacations, daylight savings time, travels, holidays, etc.
As Dr. Wang explains, “Routine is so important. So when they have that disruption, it’s an issue. Whether it’s starting the summer, starting school year, or going on break — with all of these different transitions, issues start to come up. And [daylight savings] isn’t too long if you think about it; it's only one hour difference. But I think we forget sometimes that these kids find comfort in routines because so much of their body, so much of their lives, are chaotic. Things are happening to them and they don't have control. So sometimes they need that kind of grounding. To know what's going to happen. Kids with autism, specifically, have this rigidity in terms of interest and behavior, so they're very sensitive to changes.”
Stress and anxiety
Stress can affect anyone's sleep, whether you’re a child, a teenager, or an adult. Anxiety, often caused by stress, is a big culprit in sleep challenges. Dr. Feldman tells us that kids with disabilities often have high levels of anxiety, which can cause them to have difficulties falling asleep or staying asleep. He shares a story of a patient he had with autism who consistently would wake up at night and couldn’t get back to sleep, accompanied with a lot of behavior challenges. He struggled to find the cause of the sleep issues. After some time had passed, the patient’s mother returned to the clinic and shared that her son was sleeping through the night and wasn’t having any emotional outbursts in the middle of the night. When asked what had changed, she shared that she and her husband had separated.
“I’m not advocating for parental separation,” Dr. Feldman explains, “but obviously, the stress in the environment was the factor. And so, in any family where there is a child with disabilities, it's almost a given that there's going to be high levels of stress. Stress between parents, stress between siblings, financial stress, etc. So those can all have a significant impact on these kiddos. We often underestimate kids with disabilities, that they’re not necessarily aware of the environment or how people feel. But many of them are, and the stress and the tension that goes on in the home can really affect them.”
The pressure to sleep is another factor, especially in older kids. Dr. Wang explains that in her practice, she has kids who have sleep issues, “but it's almost because of the anxiety that they have about sleep that's causing them to have sleep issues.” It can be like a vicious cycle that they get stuck in because they're not getting a good night's sleep, so they worry about not getting a good night's sleep. And that's actually causing them to get worse. “So one of the things I tell parents and kids is to not obsess over getting the perfect sleep. Some nights, you might not get a good night's sleep, and that's very common. Let's take the pressure off of sleep.” We can even teach our kids how to do that with self-talk, such as, “I can’t sleep. Yeah, tomorrow, I'm gonna be tired. Okay, I've been tired before. I'll handle it. I've always figured it out.” Dr. Wang says this kind of narrative can calm the brain, calm the energy, and naturally help kids go back to sleep.
How do sleep challenges present themselves in kids with disabilities?
If you’ve had a bad night of sleep, you know how hard it is to function the next day. But inadequate sleep and sleep disorders in general present differently in children than in adults. As this article on “Common Sleep Disorders in Children” in American Family Physician explains, “Adults present with fatigue and daytime sleepiness; however, children may present with behavior problems, including irritability, hyperactivity, and poor school performance.” This can impact developing children's cognitive functioning, such as memory, attention, and learning. Dr. Garcia concurs, telling us that “any time you impair sleep, any vulnerability that you have gets unmasked.” For example, if there's a predisposition toward seizures, a child who is sleep deprived may suddenly have seizures. Any vulnerabilities, learning or otherwise, that someone has are worsened when they’re sleep deprived. Dr. Garcia explains that for every one hour of sleep we lose, our quality of life the next day is impaired by about 10%.
But how do sleep challenges present themselves in kids with disabilities? Dr. Samelson gives us an overview on sleep in this clip, as well as some warning signs and symptoms parents can watch out for that may indicate a child is experiencing sleep issues:
An article in Frontiers in Pediatrics explains that in general, most parents of kids with disabilities report that their child sleeping too little is a common problem, but that children with different developmental disorders often experience sleep problems that are specific to their conditions. Here are some examples:
- In children with autism, sleep disturbances include sleep onset delay, frequent nocturnal wakings, bedtime resistance, insomnia, and reduced total sleep time. Children with autism also tend to get less rapid-eye movement (REM) sleep (when dreaming occurs), with around 15% of their time asleep in the REM phase, compared to about 23% for their typical peers.
- In children with cerebral palsy, sleep disturbances include insomnia, difficulty with sleep onset, night wakings, daytime fatigue, nightmares, snoring, circadian rhythm disorders, and sleep apnea.
- Infants with intraventricular hemorrhage (IVH), or bleeding in the brain, which usually affects premature babies, also have challenges in sleep, such as sleep apnea, excessive sleep (hypersomnia), and lethargy, IVH is a common issue in children with cerebral palsy.
- Children with Down syndrome tend to experience sleep-disordered breathing such as obstructive sleep apnea, as well as being restless and moving a lot during sleep.
- Children with learning and intellectual disabilities (ID) often struggle with talking during sleep, insomnia, excessive daytime sleepiness, sleep breathing disorders, and needing a parent in the room.
- Children with Smith-Magenis syndrome, Angelman syndrome, and autism had higher scores in a research study published in the Journal of Neurodevelopmental Disorders in the areas of night waking, parasomnias (abnormal behavior during sleep), and daytime sleepiness.
- Children with ADHD often experience shorter sleep time, problems falling asleep and staying asleep, circadian rhythm disorders, and nightmares, especially those children with insomnia.
- Children with cystic fibrosis (CF) face special challenges related to sleep, including “coughing, low levels of oxygen in the body during sleep (nocturnal hypoxia), insufficient breathing that leads to too much carbon dioxide in the blood (alveolar hypoventilation), obstructed nasal passages (from nasal polyps or congestion)” and sleep-disordered breathing (SDB), such as snoring, difficulty breathing during the night, mouth breathing, and pauses in breathing during sleep.
- Children with fetal alcohol spectrum disorders (FASD) and/or prenatal drug or alcohol exposure are also at risk for greater sleep challenges, such as less sleep and more fragmented sleep among newborns, as well as chronic insomnia, sleep onset delay, night wakings, parasomnias, sleep disordered breathing, shortened sleep duration, circadian rhythm sleep disorders, and more.
Common sleep challenges and sleep disorders (and how to address them)
While we all may have trouble with sleep here and there, when does sleep become an actual problem with our kids? Dr. Wang tells us that while one night of bad sleep isn’t typically a big deal, it becomes a problem if we’re seeing that happening consistently, multiple times a week, or if it's interfering with their day-to-day functioning, such as if they're waking up every day and going to school feeling exhausted and not able to participate, or they’re needing a lot of naps. All this can be dependent on the length of sleep but also the quality of sleep — for example, if a child has sleep apnea or nightmares and wakes up so frequently that they don’t get restful sleep at night. So if you notice that your child is getting eight hours of sleep but is still feeling exhausted, that should be explored by a doctor and possibly a sleep study (more on this later).
Let’s explore a few of these common challenges that can present in our kids.
Sleep apnea
Sleep apnea falls under sleep-related breathing disorders in pulmonary medicine, which focus on the lungs and respiratory system. For this article, we’ll focus on obstructive sleep apnea (OSA), as opposed to central sleep apnea, as it’s more common in children with disabilities, especially those with Down syndrome, cerebral palsy, and epilepsy. Sleep apnea is “characterized by episodes of a complete airway collapse or a partial collapse with an associated decrease in oxygen saturation or arousal from sleep.” Kids with sleep apnea repeatedly stop and start breathing while they sleep. While not every child will exhibit these symptoms, a few you can be on the lookout for include loud, disruptive snoring, restless sleep or flopping around during sleep, and excessive daytime sleepiness. You may also be able to witness apneas, or the stop and start breathing, during sleep.
Sleep apnea is often an issue in people with Down syndrome due to differences in facial and oral structure, a narrow airway in the nose and throat, low muscle tone, and poor coordination of airway movements. Most children with Down syndrome will have at least mild sleep apnea by age 15, with studies suggesting that 53-76% of children with Down syndrome have sleep apnea, compared to about 2-6% of children without Down syndrome. Other studies have found that sleep apnea “is associated with increased rates of ADHD-like behavioral problems in children as well as other adaptive and learning problems.”
Sleep apnea is often addressed by a polysomnography (PSG), also known as a sleep study. A sleep study “consists of a night of observed sleep during which professionals measure brain waves, the oxygen level in the blood, heart rate, breathing, and eye and leg movements. Children who are unable to have a PSG due to lack of access or inability to tolerate the conditions might have a home sleep study or home pulse oximetry.” Basically, during a sleep study, the child will spend the night sleeping in the lab, with wired electrodes stuck onto the scalp, legs, and chest. Dr. Garcia explains that generally, a sleep study answers one question: does your child have obstructive sleep apnea?
If you’re wondering when to have a sleep study for your child, Dr. Garcia tells parents to consult with their pediatrician. “If the parent is worried, they really should not carry that burden alone. So we have nice tools like the pediatric sleep questionnaire, sleep-disordered breathing subscale; it's 22 items. A pediatrician can go through that and help the parent decide whether a sleep study is indicated.” However, a sleep study is generally recommended by age 4 for children with Down syndrome due to the high risk of sleep apnea.
So after you’ve decided to get a sleep study, how do you help your child through it?
Dr. Garcia has a few tips for parents to help children with the equipment needed for a sleep study, and the discomfort and anxiety that may come with the study. First of all, if you can do the sleep study at a children’s sleep clinic, you’ll be working with technicians who have years of experience working with children in general, and children with disabilities specifically. They will know when to distract your child, when to stop if your child feels anxious, etc.
As Dr. Garcia says, the technicians might say, “‘Let's play a game. Let's distract this person for a little bit so that they can cool down and then we'll start again.’ And if we start again, and they start to get tired again, they'll call me up and they'll say, ‘Dr. Garcia, do we have to use the EEG leads? Can we just do airflow respiratory bands and oximetry tonight, because Billy's having a tough time?’ The answer is always yes. So we work together to get the job done. But [the technicians] have to be pretty comfortable with kids. And we have one sleep tech for each patient. But if you have an adult sleep lab where there's one sleep tech for every two patients, they just don't have the time and patience to devote to kids who really are saying, ‘Please slow down, I need to understand.’ Or they may be saying, ‘I don't care what you do, I'm not doing this the way you think you want to do it. So you're gonna have to change your mind.’ I think that's the sign of a good parent: they don't insist on doing it their way; they listen to the kids.”
Dr. Feldman explains more about sleep studies and how sleep clinics can accommodate kids with disabilities:
For more tips on helping a child through a sleep study, this guide by the Vanderbilt Kennedy Center offers tips for kids with intellectual and developmental disabilities.
If the study shows that the problem is breathing-related, meeting with a pulmonologist is the right place to start. Treatments for sleep apnea vary and can include airway pressure devices, oral devices, and surgery. Continuous positive airway pressure (CPAP) and bilevel positive airway pressure (BiPAP) therapy are two common ways to treat sleep apnea, but are also often used as a secondary treatment after an adenotonsillectomy. The primary machine used to treat sleep apnea is CPAP, which delivers a steady stream of air through a mask sealed around a person’s nose and mouth. The airstream pushes against any obstructions, maintaining an open airway for breathing. A BiPAP machine is used for individuals who can’t tolerate CPAP machines.
Common treatments for sleep apnea
One of the most common treatments for sleep apnea in children with Down syndrome is an adenotonsillectomy (surgical removal of tonsils and adenoids). A sleep study is recommended after this surgery to determine whether the sleep apnea was resolved, because the surgery doesn’t always resolve sleep apnea. Dr. Garcia adds that, “There isn't a kid in the world who says, ‘I would prefer CPAP for the rest of my life over an adenotonsillectomy. So they go see our otolaryngologist [a medical professional who specializes in diagnosing and treating conditions of the ear, nose, and throat] and see whether an adenotonsillectomy is medically indicated. If it is, they do that. If it's not, they send them back, and we talk about CPAP if they've got severe obstructive sleep apnea.“
Another treatment option is hypoglossal nerve stimulation, “an implanted medical device that electrically stimulates tongue movement with breathing.” This is relatively new, but studies with adolescents with Down syndrome have found it to improve sleep apnea severity by 53%. The only approved hypoglossal nerve stimulator is the Inspire device, now approved for kids of a certain age group who meet certain criteria, which you can find here.
Insomnia
Insomnia is another common sleep challenge for kids with disabilities. This includes difficulty getting to or maintaining sleep, and can be behavioral or physiological. What’s the difference? Behavioral insomnia often includes refusing to go to bed or having poor sleep hygiene — using technology in bed, eating or drinking stimulating foods before bedtime, etc. — which can delay sleep onset or contribute to difficulty settling back to sleep after waking up at night. Physiological causes of insomnia can include feeling wide awake before bedtime, maybe due to atypical melatonin, any kind of bodily pain, GI issues, etc. Insomnia can also be caused by “emotional difficulties (e.g., separation anxiety) or communication difficulties that may preclude them from comprehending parental instructions about falling asleep.”
Dr. Garcia tells us that the bulk of his work involves insomnia, often with kids with autism, about 80% of whom experience insomnia, especially “insomnia that delays the onset of sleep. They also get less rest overall than do typically developing children, and frequently awaken during the wee hours, roiling the household.” The question is why? Let’s explore the science of insomnia and autism.
“Early in gestation, the brain is a glob of undifferentiated cells — they aren't yet specialized into doing their own separate tasks,” Dr. Garcia explains. “But very early in gestation, the different localizations of ability begin to start to migrate. And as they migrate, these long, stretchy things connect the different areas of local control and become the interneurons, so that these different areas of the brain can talk to each other and coordinate function. Autism is a [disability] where the primary problem is those stretchy interconnections have broken. So that doesn't just happen in autism, that happens in all [disabilities] where the interneurons have been interrupted. And it's why the insomnia that you see in people with neurodevelopmental disabilities is different from behavioral insomnia — it's generally not difficulty getting to sleep, it’s difficulty staying asleep, or ‘sleep maintenance insomnia.’”
Night waking, also called nocturnal waking, is a form of insomnia where children can’t maintain sleep and wake during the night. This isn’t usually a problem if a child can go back to sleep, but it’s often an issue for families whose children need protective supervision, such as for night wandering. Children may wake up in the night and wander due to changes in a routine, sensory overload, or just because they’re hungry.
If a child is escaping from their room a couple of times a week, Dr. Garcia recommends putting a ”motion sensor alarm outside so that the parent doesn't develop what I call sympathetic insomnia — they're listening all night long for the child to be escaping. Some kids require a bed that keeps them safe with some type of zipper. So if they are crawling out windows and escaping into the night, it's a dangerous thing. But for starters, a motion sensor alarm and getting the diagnosis right is the important part.”
Dr. Samelson explains more about tackling these situations:
In general, it’s important in this case to create a safe sleeping environment. You can remove any hazards in the room and add alarms on doors leading outside. You can consider specialized sleep equipment, such as a safety bed. Other things to consider include enrolling in IHSS, a Medi-Cal program that provides home-based personal care and related services so that people with disabilities can remain safely in their communities. IHSS hours are awarded for allowable services to the extent that a child’s needs exceed those of a typically developing child of the same age. The Regional Center may also fund in-home respite services (including specialized supervision) for the purpose of providing parents with relief from the ongoing care and supervision of their child with developmental disabilities. The number of respite hours provided is based largely on the extent of the child’s care needs, as well as extenuating family circumstances.
Parasomnias
Parasomnias include things like sleepwalking, night terrors, bedwetting, and excessive nightmares. Seizures can be associated with parasomnias but aren’t a parasomnia themselves. Parasomnias can be caused by genetics, medication, stress, and other sleep disorders. Dr. Samelson explains that parents should learn to distinguish between night terrors and nightmares, as those things often get mixed up:
“Night terrors are where kids wake up and they seem very disoriented and distressed, but they were not dreaming; that does not happen during dreaming. Those are night terrors. Typically developing children do get them and can go through a period of time where they get them quite a bit, and usually the child does not remember them later. So if you don't wake them up or make a big deal about it, they actually won't remember. A nightmare is different. A nightmare is actually a scary dream, and that is different. Children who have language will be able to tell you they were having a nightmare. So those two things are different. Night terrors are very typical in children, all children, and especially young children. Parents can soothe them and cover them back up if they push the covers off them, because they're not really awake, per se. So those are two different things, and sometimes parents get confused about that and think the night terrors are nightmares, but they're different.”
Other sleep disorders
While we can’t explore all sleep challenges in this article, here are some other ones to note. Studies show that in kids with disabilities, parasomnias decrease with age. Excessive daytime sleepiness (EDS) is often a side effect of other sleep disorders, such as sleep apnea and circadian disorders, and is common in children with ADHD. An article in the European Journal of Paediatric Neurology explains, “EDS, especially in children, may manifest with paradoxical symptoms like hyperactivity, inattention, and impulsiveness. However, common signs of EDS in children are the propensity to sleep longer than usual, the difficulty waking up in the morning, and falling asleep frequently during the day in monotonous situations.” Circadian rhythm sleep disorders, such as delayed sleep-wake phase disorder, which is more common in adolescence, is “when a child's natural sleep and wake schedule is shifted later, by at least several hours, and thus conflicts with daily obligations such as school attendance.” Sleep-related movement disorders commonly include restless leg syndrome, which feels like “sensations in their legs that make it hard for them to fall or stay asleep.” Symptoms can start around five years of age, with ADHD co-occurring in about 30% of children who experience restless leg syndrome. Another one includes periodic limb movement, which occurs frequently in children with Down syndrome.
Sleep and epilepsy
Sleep and epilepsy are often intertwined, although complex. Sleep deprivation can trigger seizures. Sleep disorders and epilepsy are also closely related. For example, obstructive sleep apnea was found in 71% of people with epilepsy who had a sleep study. Sleep can impact the “frequency, occurrence, timing, and length of seizures.” It can also sometimes be hard to determine the difference between a parasomnia and a seizure. Children can also have nocturnal seizures that happen during sleep. This can look like “brief awakenings from sleep to dramatic movements of the arms and legs or even sleepwalking or making noises.”
While nocturnal seizures can happen to anyone with epilepsy, they are often associated with a rare form of epilepsy called sleep-related hypermotor epilepsy, which “can look like a simple arousal from sleep, at times confused as a nightmare or night terror.” These seizures may last a few seconds to a few minutes but are usually about 30 seconds. While symptoms can overlap, here are a few ways a night terror is different from a nocturnal seizure: night terrors don’t often involve involuntary motor movements, are more common in the first half of sleep, and often involve some kind of daytime impairment.
Read more about these common sleep disorders and possible treatments in this article in American Family Physician.
Does age matter when it comes to sleep?
In a nutshell: yes. Here are a few age-related sleep findings according to this study on sleep and children with neurodevelopmental disabilities in Pediatrics:
- Bedtime resistance, parasomnias, and night wakings improved with age.
- Sleep onset delay and daytime sleepiness increased with age.
- Night wakings and sleep duration decreased with age.
- Younger children had a higher bedtime resistance compared to older children.
- Children under five had the most wakings during the night, indicating fragmented sleep.
- Younger children had more parasomnias than older children, suggesting more disturbed sleep.
- Older children had the highest daytime sleepiness, revealing more daytime fatigue.
- Seven- to eleven-year-olds had the highest sleep anxiety, indicating this age had the most anxious thoughts with regard to sleep.
Infants and sleep
When it comes to newborns and infants, addressing sleep challenges is a different ballgame. Dr. Wang tells us that when she was a new mom, her pediatrician taught her to put her infants down when they were drowsy, not asleep. Why? Because you want them to learn how to fall asleep and how to soothe themselves. The goal is for them to learn sleeping skills so that they know what to do if they wake up in the middle of the night.
Dr. Feldman explains that parents need to help their infants adopt healthy sleep habits, such as good sleep hygiene, and to be able to self-soothe and put themselves to sleep. But he wants parents to keep in mind that it's not reasonable to expect a child under six months to sleep through the night, because they haven't matured enough and have nutritional requirements that will wake them up throughout the night. But once a child is able to sleep through the night in terms of their nutritional requirements, that’s when we really can start teaching them to learn to self-soothe. Again, this applies to infants who don’t need nighttime medical care, tube feeding, breathing treatments, etc. For example, “You could have a child with Down syndrome who is healthy within the context of their Down syndrome and doesn't really need any medical attention at night — there's no reason why you couldn't teach them healthy sleep habits.”
This also helps parents learn healthy sleep habits because the parent is the one who has to teach the child. “Often, you need the parent to do some self-reflection,” he explains. “I've had patients where parents have come in and their children aren't able to fall asleep independently, they require parental assistance in order to be able to fall asleep. And in order to implement any kind of behavioral plan, the parents have to be motivated…. Especially for premature babies who are vulnerable and have a lot of medical problems, parents can adopt an overprotective type of mentality, which then precludes them from being able to set boundaries or set some kind of limits or establish some kind of regular routine.”
Teenagers, puberty, and sleep
This leads us to teenagers. While studies tell us that teenangers should be getting 8 to 10 hours of sleep a night, “fewer than one-fourth of high school students are meeting even the minimum.” A study in the journal SLEEP suggests that neurobehavioral changes associated with puberty, such as sleep, show up in preteens before the bodily changes of puberty are evident. For example, “sleep-wake organization undergoes significant reorganization during the transition to adolescence. The main changes include a delayed sleep phase, which involves a tendency for later bedtimes and rise times; shorter sleep, which is associated with increased levels of daytime sleepiness; and irregular sleep patterns, which involve sleeping very little on weekdays and sleeping longer during weekends to partially compensate for this sleep loss. During maturation adolescents also develop greater tolerance to sleep deprivation or extended wakefulness.” The study also suggests, however, that psychosocial issues such as school demands, social activities, and technology can also lead to the development of bad sleep habits.
Other articles, such as this one in the New Yorker, link puberty and sleep issues — especially for kids with autism — to drops in melatonin, the sleep-regulating hormone that the brain produces in response to darkness. This drop in melatonin can happen as a result of getting less sleep or more irregular sleep, or from spending more time in front of the blue light of screens. “A drop in melatonin can contribute to symptoms of anxiety and depression; it also activates an increase in a protein called kisspeptin, which is another of the trigger hormones for puberty.” This can suggest that precocious puberty (which is more common among kids with disabilities) can contribute to sleep issues. Some studies show that children affected by neurodevelopmental disabilities could experience early pubertal changes at least 20 times more often than the general population does.
Sleep tips for teens
So what can parents do? As Dr. Wang explains, “Teenagers are getting less sleep, so when puberty starts and all the hormone changes happen in the body, that affects sleep.” Here are some of her tips for teens:
- First, ask yourself whether there are factors out of your control that you need to address. That may be a question for a pediatrician or pediatric endocrinologist — to help manage those hormonal changes that you're seeing.
- Accommodate for things that teenagers need in their life at this point, such as more activities to be involved in, more friends, etc. Sometimes we need to factor that into their day-to-day routine.
- Bedtime for a five-year-old might look very different from bedtime for a 16-year-old, but the overall structure of that routine should stay the same. For example, iPads and phones need to be shut off before bed. As Dr. Wang explains, “We want to accommodate and give kids some independence as they're growing up, but we still want to keep that general routine for them because that consistency and routine is what promotes a healthy sleep habits and sleep patterns.”
- Allow for age-appropriate changes. Dr. Wang points out, “Maybe their bedtime is going to be pushed back slightly. Maybe on some nights with [a school] project, it's okay to extend half an hour. Once they have established a good routine, you can allow for some flexibility.”
- Shut off the TV or technology at a certain time and have a wind-down period for teenagers. However, remember that wind-down activities might look very different from that of an infant or child. “A teenager might be able to read a book on their own; maybe they could write in a diary or journal at that time. Maybe they're more capable of doing their own hygiene activities and can do a bath or bubble bath.”
- Think about their diet, especially sugar or caffeine. “I know some teenagers love their Starbucks. And every kid is different; some people are not affected by caffeine, but some people are very sensitive to caffeine, and if they're tossing and turning at night, caffeine can be a big piece of it.” With food, Dr. Wang tells us that eating too big of a meal before bed and feeling too full can also affect sleep; similarly, not eating enough and feeling hungry can impact sleep.
- Movement is important, too. Dr. Wang explains that being active during the day, whatever that may look like for the child, can help kids settle down more easily at night.
Sleep specialists
If your child is having challenges with sleep, it may be confusing trying to figure out who to see. A pediatrician? A pulmonologist? A sleep specialist? A sleep trainer? While the first step is often making an appointment with your pediatrician, if their recommendations don’t work, the next step is always a specialist. Dr. Garcia explains that if it’s a breathing-related problem, like sleep apnea, your go-to is a pulmonologist. If the problem is sleeplessness, like insomnia, a pulmonologist may not be a lot of help because their interest is in breathing. In that case, someone like a sleep doctor/sleep specialist is much more helpful.
Dr. Feldman agrees, adding that it really depends on what the parents feel is the primary cause for the sleep problem:
What do sleep specialists want parents to know?
If your child or teen struggles with sleep, bedtime is likely a time you dread. But it doesn’t have to be a miserable experience, and you don’t have to feel like you’re struggling alone. Dr. Garcia and Dr. Feldman leave us with a few words of support and guidance as we journey through helping our kids get a good night’s sleep:
Be honest with how you feel. As Dr. Garcia says, “Over the last 31 years. I've been struck by the characteristic of parents who are more successful are ones who are willing to have a language around their feelings. And they're honest about it; they're not ashamed of it. They'll say, ‘My son wakes up seven times a night and wants a cheeseburger, and I feel bitter.’ Some parents would inhibit that, but the ones I just say, ‘I feel better’ — now I can go to work. Don't be afraid to unburden yourself to your pediatrician or to your friendly pediatric sleep doctor. That way we can get the job done. That's my best piece of advice.”
It can feel really tough. Dr. Feldman leaves us with this:
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