Interventions to Help Children Who Have Trouble Sleeping
Many parents know the struggle of getting kids to fall asleep and stay asleep all too well. While it’s no easy task, the good news is that there are tried-and-true strategies to help children settle into their own beds and sleep through the night. But where do we begin? Every sleep challenge is going to require a different approach because every child is different. It can feel even more complicated and overwhelming because it’s not just sleep we’re dealing with, it’s sleep with autism, or sleep with Down syndrome, etc.
We turned to the experts for answers, 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.
The four gremlins of sleep medicine
So where should parents start? As Dr. Garcia explains, “The average child who comes in to see a pediatric sleep specialist leaves with two-and-a-half diagnoses, and those things are often playing against each other. So, for example, for a child with Down syndrome, we have to prioritize the different diagnoses. If the family is primarily concerned about obstructive sleep apnea, then we want to get the sleep study done first so we can decide whether or not we want to move on to adenotonsillectomy. Because we don’t want to be treating someone for insomnia when 80% of the presentation is around obstructive sleep apnea. We want to respect what the burden is for the family; then things go much more smoothly.”
Dr. Garcia explains that when approaching treatment, the first question he asks is, “What is the burden here? What burden are you carrying? If it's ‘we're tired of being up in the middle of the night because of insomnia,’ we put our energy there. If they say, ‘My child is choking several times each hour and we want a sleep study,’ well, that's a different question. And it may be in the same child. The easiest way to prioritize the system is to listen to the family.”
He uses a system he calls “the four gremlins of sleep medicine: insomnia, parasomnia, dyssomnia, and hypersomnia.
- Insomnia: you can't stay asleep, or get to sleep
- Parasomnia: you're doing strange things like walking and remaining confused and asleep
- Hypersomnia: like narcolepsy, where despite adequate nighttime sleep, you're too sleepy during the day
- Dyssomnia: things that fragment sleep, like obstructive sleep apnea or restless leg syndrome
“A pediatrician should be able to launch you in the right direction,” Dr. Garcia explains. “Once you have one of those four directions, it's hard to screw it up. You'll notice that sleep studies are only appropriate when we're looking at a dyssomnia, something that's fragmenting sleep. Most of the time, in people with neurodevelopmental disabilities, we're talking about insomnias, which don't require a sleep study. In fact, insurance companies won't pay for a sleep study to evaluate insomnia. So I always start with the pediatrician. And then they can narrow it down to which one of the four sleep gremlins is to be evaluated.”
But when it comes to insomnia, Dr. Garcia explains that the first step is getting the diagnosis right. “If it’s insomnia, then we ask ourselves is this a behavioral insomnia, where the child has kind of flipped the parent-child relationship and says, ‘I'm in control and I need you to replace my pacifier 10 times a night or I'm going to scream’? Or is this on the other end of the spectrum where the family is saying, ‘It doesn't matter what we do, this child can’t stay asleep.’ Two things that look very much the same — the child's awake in the night — but are completely different in what our response is.” He explains that with behavioral insomnia of childhood, he talks to parents about behavioral responses (more on this later).
On the other hand, “If the insomnia is neurologically driven, sleep maintenance insomnia as a consequence of neurodevelopmental disability, it doesn't matter what the parents do, they're not going to win this. And so we may talk about things like bed restriction, which is decreasing the time in bed to equal the total sleep requirement and doesn't require medications. Or we may talk about medications eventually, but it's up to the family. My job isn't to prescribe medications, my job is to get the diagnosis right. And then it's the family's choice at that point.”
Creating a treatment plan
Dr. Feldman tells us that with sleep, “There is no one plan that fits all. Never. Everybody has their own plan or warrants the unplanned, depending on what the circumstances are. So one has to be very meticulous in taking a sleep history and figuring out what is actually going on.”
Here are a few things to look at:
- What's going on with the child from a medical perspective?
- What do we anticipate with regard to the underlying condition and sleep problems that are associated with that?
- Environmentally, what other stressors are there? Are they having stressors at school? Are they being bullied?
- Are parents setting good boundaries around sleep?
He explains more about how a treatment plan is created here:
Sleep logs and sleep histories
When visiting a sleep clinic, often the provider will conduct what’s called a 24-hour sleep history. Dr. Garcia explains, “There are two key components to a sleep clinic visit that are not present in other types of clinic visits. The first one is called a 24-hour history: you start at a nonthreatening time, like dinnertime, and then ask, ‘What happens next?’ Parents often want to jump to the middle of the night, and then you don't get any preamble and it's not as good a history. So you start with dinnertime and ask what happens next, then just unspool the history in chronological order. You do it all through the 24-hour clock. It’s a nice, gentle way to get the clinical sleep history for 24 hours.”
The other component to a good sleep study is sleep logs. Dr. Garcia tells us, “About two weeks before the family comes in, we give them a sleep log. A sleep log is not a journal. A sleep log is just a grid, a piece of graph paper with 12 horizontal lines and 24 vertical lines representing each of the 24 hours of the day. You ask parents to shade in the blocks where they think the child was asleep and leave it blank when they think the child was awake. And they do that over two weeks and bring that in. So now you can avoid the most dreaded word in the English language: ‘sometimes.’ It's a word that means absolutely nothing and one that gets overused when people don't bring their sleep logs. So if you do the 24-hour history and you keep your sleep logs, my promise to parents and families and pediatricians is that more than half the time, the diagnosis will be obvious. That's my promise. Do that homework, and you'll be rewarded. Then the pediatrician's job is to decide which one of the four gremlins is at work here. We can then focus, and that's not so hard.”
This kind of log is what a sleep specialist will ask for, but you can also keep your own sleep diary at home and document more specific information. You can track things like naps, bedtimes, wake times, nightmares, etc.
You can do the log in the morning and at night, and it should take you five to ten minutes to complete. You can even add it to your child's bedtime or morning routine. If your child is older or able to complete it with you, you can do it together. You can then share your findings with your pediatrician or sleep specialist. Here are sleep diaries for children and teens you can download and complete. Here is another one from CHOC for children and another for teenagers.
Behavioral approaches to sleep issues
The interruption of a normal schedule, as well as excitement, anxiety, and other big emotions, can disrupt normal sleep schedules. Like many of us, if kids don’t get an adequate amount of sleep, they have a harder time being social, and it is much harder for them to cooperate or concentrate with that sort of fatigue. Sleep is such a big factor in a child’s behavior. As Dr. Feldman explains, “In terms of sleep physiology, we all have certain behaviors that we associate with falling asleep. And we implement those behaviors when we are going to sleep.” For example, we may have a favorite sleeping position, or we may like to read or take a bath. Kids can get into poor sleep habits when they associate certain behaviors with falling asleep. Perhaps they were ill, fell asleep in a parent's arms, etc. They may have learned to associate parental support with being able to fall asleep or stay asleep.
“In order to change those behaviors,” he explains, “you have to teach the child to learn to fall asleep independently, which when you have a neurodiverse child — for instance, with autism, who is so dependent on routine — it’s a lot more difficult. So one has to adopt very gradual changes and customize plans for parents based on all the circumstances. But the approach in my view is to be very gradual but very systematic.”
So what can parents do to ease our kids’ sleep troubles, whether they result from traveling across time zones, staying up later at grandma’s house, or being unable to fall asleep in a different bed?
Establishing routine
The best thing you can do is try to stick to that original sleep routine as much as possible. For example, if you’re traveling across different time zones, having an earlier dinner to keep the same bedtime may help with the adjustment process on the first day. You can also ease into the change by slowly shifting your child’s bedtime a few days before your trip, if that will help with the different time zone when you get to your destination. As Dr. Samelson says, the less disruption you can cause, the better!
Dr. Samelson explains that change is particularly hard for our kids, so we need to prepare them as best we can by using tools like schedules, transition prompts, and visual schedules.
As Dr. Samelson explains, depending on how much language the child has as they get older, you can get them involved with setting up the routine they want and setting up a visual schedule — something that they really like — and give them as much self-determination about it as possible. “For many of our kids, of course, we need to do some kind of a transition warning. You don't just say, ‘Oh, it's time to go to bed. Okay, here we go.’ No, that's not going to work. We have to do some kind of a transition warning, and it could be with a timer, it could be a visual transition warning, but they need to know that in 10 more minutes, it's going to be time to start the bedtime routine.”
You can also try prompting the child, but Dr. Samelson warns parents that prompting can become nagging, especially as kids get older. Instead, she recommends using visual schedules. Or, if they're able to use an iPad or phone, rather than you prompting them, you can use different apps or programs to do it for you.
When it comes to routine, Dr. Wang explains that it’s important to meet the child where they are with their needs. For example, having the things they need in a place where they know they can easily access them. With water, for example, maybe a cup is placed next to their bed so they don’t have to leave their room and go to the kitchen in the middle of the night. Or if they get cold, having an extra blanket at the foot of the bed instead of in a closet down the hall.
However, as much as we’d like to maintain routines and schedules, things happen that can send us off course. For example, holidays, school breaks, daylight savings, etc. can all disrupt routines. Dr. Samelson tells us, “Depending on how sensitive the person's child's sleep is, just staying up late one night at grandma's can actually throw off their whole sleep schedule for the next week or two. It’s actually hard for kids who are very sensitive sleepers, and so I would just be really careful about that. It's not that you'd never want to go to sleep at grandma's house, but try to keep the same routine.”
Going to bed and getting up at the same time every morning and evening are two of the biggest strategies for improving sleep. For example if bedtime is eight o'clock, bedtime is eight o'clock wherever you are. And if a child is very sensitive to the way things feel and has sensory sensitivities, you can bring your own sheets, blankets, or pillows — whatever helps make the child feel very comfortable.
Children’s biological clocks are also really sensitive, Dr. Wang tells us, so they're very much affected by daylight savings and school breaks. So creating a routine is important, such as if we're talking about back to school. “Summer sleeping time might be slightly different because it's summer. So if it's starting school, you want to gradually change that back to what it needs to be. So maybe only five or ten minutes at a time. But you give yourself that time to gradually get back to that routine.”
Communication
Dr. Wang tells us that sometimes, for kids with disabilities such as autism, there is also a social communication issue. Some kids are non speaking, for example, or have very limited language ability. So maybe certain social needs are not being met or they're having trouble communicating what they need. Children with autism, specifically, can also have certain repetitive interests where their brain just doesn't want to shut off. For example, she had a client who was obsessed with Star Wars. “If your brain is constantly thinking about Star Wars — or whatever they're thinking about — and loves it, if you tell them it’s time to sleep, their brain responds, ‘No, I'm not done yet!’”
So to tackle a plan, it’s important to know what exactly is happening with the child. In this case, Dr. Wang says, “Maybe we can set a time limit or we could set up a specific time we could talk about Star Wars, maybe having that earlier in the day and not right before bedtime. Or maybe a child needs to complete a certain task, so teaching kids, ‘Hey, let's break here and I won't touch it. Let's put a mark on it.’ I don't know what's going to work for every kid, but knowing what's going to help with their specific social communication needs, in addition to having a good sleep hygiene routine, may help those very particular behavioral issues.” And with a communication issue, you can find a way for a child to express their needs, whether it’s “I'm not done with something” or “This thing we’re talking about is important to me right now.”
Reward systems
Something else you can try that goes hand in hand with addressing behavioral challenges that come with sleep is offering some kind of reward for maintaining a consistent sleep schedule. Dr. Wang tells parents to be very clear about what skills they want to work on and give kids motivation to work. For example, she has had clients with ADHD with whom she used visual schedules for nighttime routines. “So every single time they did that particular visual schedule, they would put a star or happy face next to the activity. ‘I need to go to the bathroom first; oh, I need to take a shower; I need to put away this; etc.’ So they are following along the visual routine with a checkmark with some sort of behavior enforcement that we discuss ahead of time. And at the end, they can earn extra story time or mommy-and-me time or extra privileges.”
If the child has a hard time communicating, we may not know what's going on and can’t help address their particular issues — for example, if they're wandering to the closet after brushing their teeth. So they need something to really orient and focus them, and having something visual and being able to check off something and/or earn something can feel very motivating for them.
Setting boundaries
It’s not easy seeing your child struggle with sleep. And setting boundaries with sleep can be even tougher. “Many families are unable to set routines for many reasons,” Dr. Feldman says. “They may have other disruptors in the home, they may be working the night shift, there may be so many factors that make it very difficult to even set a routine.” But he explains that creating good boundaries and routines with sleep is vital in creating healthy sleep patterns for our children. “When you have difficulty setting boundaries, it's going to have implications in terms of sleep. If you can't set boundaries, the child is not going to know when it's bedtime and they’re not going to know when it's not time to play. And when we say setting boundaries, we're not talking about being draconian. We're just talking about being consistent and being kind and being fair. But also just saying, ‘There's time to play, we play in the day or we do this in the day, but now it's time to go to sleep.’ And we set up our routine and we get on with it.”
Sleep hygiene
Sleep hygiene: what is it and why do we need it? Sleep hygiene is a term that refers to the “healthy habits, behaviors and environmental factors that you can take charge of to help you get a good night’s sleep.” It’s a big factor in sleep health and something you can do at home. What can this look like? Here are a few things to consider with sleep hygiene, compiled from insights from Dr. Wang and this handy list from CHOC.
- Create and stick to a consistent bedtime routine, even on weekends, if possible. This can include brushing teeth, taking a bath, and reading a story, for example.
- Make sure your child wakes up and goes to sleep at the same time every day.
- Keep TVs in the main living areas of the house, rather than in bedrooms.
- Create a good sleeping environment in your child’s bedroom. Avoid having them do things like playing games, watching TV, or playing video games in the bedroom. When they do so, their brain is actually making an association with fun and excitement, which is still there when they're lying in bed trying to sleep.
- On a related note, make sure beds are just for sleeping. Have them do homework in a different room or a different part of the bedroom (not on the bed).
- Ensure the bedroom is dark, cool, and quiet.
- Avoid caffeine, soda, and sugar for hours before bedtime.
- Reduce the noise in the house during bedtime. You can also try using a sound machine to create an inviting environment for kids to go to sleep. Some kids may prefer earplugs.
- Turn off devices such as iPads or phones two hours before bedtime.
- Add an adjustment period before bed for kids to do some reading or coloring so that their brains can slowly wind down and settle themselves into that sleep mode that we want them to be in. Do very low-stimulation activities to prep for bedtime, such as puzzles or reading, or give them a bath. You can read them a story or they can read to themselves. Play relaxing music and give them comforting objects.
- Use natural light to adjust their circadian rhythm. During the day, make sure your child gets a lot of sunlight and is outside as much as possible.
- Adjust the light in the bedroom to help the release of melatonin. Use warm/yellow light rather than harsh white light. For nighttime, get blackout curtains or an eye mask to control any light stimulation.
- Incorporate physical activity or some type of mobility during the day.
- Address all sensory needs. Make sure your child has pillows and blankets that are soft, pajamas that make them feel good, a comfort object, and maybe a weighted blanket. Also be sure that there is no extra noise or strong cooking smells or fragrances.
- Dr. Wang adds that kids who wake up in the middle of the night and toss and turn can feel extremely frustrated. When they're tossing and turning for more than 20 minutes, you can teach them to just get out of bed and do something that's really low stimulation. If the feeling that they’re developing during that period of wakefulness is frustration, stress, or anxiety about why they’re not falling asleep, their brain is making a different association than what we want. Of course, this depends on the child and whether they are developmentally able to self-soothe.
Parents can even participate and model this for their child, Dr. Wang explains. Shut off your iPad or phone and read or take a bath before bed instead. You can also practice breathing exercises for five minutes. “A lot of things parents can do for their own health and for their own sleep hygiene can also help create a routine for the whole family. A lot of these are overall good lifestyle changes that everyone in the family can try. And I think that's setting the foundation. Maybe the results are not immediate, not tonight, but tomorrow, next week, next month, next year…but everyone is learning the skills that they need.”
Tips for food
Which foods help sleep, and which foods are bad for sleep? Here are a few tips:
- The biggest food-related topic to address is caffeine and sugar. Avoid sensory-stimulating food and drink such as sugar, chocolate, and caffeine, including soda and coffee.
- One study found that a “high frequency of breakfast consumption is associated with fewer sleep difficulties. Similarly, frequent consumption of vegetables and fruits is significantly associated with fewer sleep difficulties. Conversely, the study found that consuming more sweets and soft drinks is associated with more sleep difficulties.” 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.
- Dr. Wang tells us that often, foods that can help promote sleep include magnesium and tryptophan, because they affect the hormones in our bodies and are more natural. For example, these might be foods or beverages like milk or nuts or leafy greens.
To co-sleep or not to co-sleep?
Co-sleeping can be a polarizing topic. Do you allow your child to leave their room and come into bed with you? What if it’s happening every night? Research shows that weekly co-sleeping is more common in children with motor disability caused by conditions such as cerebral palsy, epilepsy, neuromuscular diseases, or other genetic disorders, because it’s a lot easier for the parent to have access to the child.
Dr. Samelson explains that it doesn’t have to be a problem. “Some people will say, ‘Oh, you should never do that,’ but I don't think so. There are cultural and specific family routines and comfort about putting kids in bed with them or not putting kids in bed with them. I think that’s an individual choice and for some kids, [co-sleeping] can work out very well. Or it may be even having some kind of a cot next to the parents’ bed, where they can be right there.” This can be especially helpful as routines change during the holiday season. In other words, if your child sleeps better with you during times of big emotions or different locations, that’s okay!
When to use medication?
Sleep medication, melatonin, herbal remedies — what’s safe and what’s not? Let’s explore. Melatonin is a hormone that our bodies naturally produce in order to regulate our sleep-wake cycle. It begins to rise shortly after nightfall, promoting sleep. It’s also a popular sleep aid, often used to help children with ADHD, autism, and other neurodevelopmental disorders fall asleep. It’s also helpful as a treatment program for youth with a circadian rhythm disorder called “delayed sleep phase.” For example, studies have shown that individuals with autism have an irregular secretion of melatonin while children with Smith-Magenis syndrome “have an inverted melatonin rhythm — meaning melatonin is at peak levels during the day as opposed to at night.” One study showed that melatonin did improve sleep in 63 percent of the children with autism who received it.
Dr. Garcia tells us that “using a sleep maintainer is really a nuanced conversation and is driven, again, by the diagnosis. It takes me an hour in the clinic to decide if a child needs medication, and if so, which one.” He tells us that melatonin has its place and it’s relatively short acting, with small amounts often being sufficient. Amounts may vary from 0.5 mg to 5 mg. However, studies show that only some children respond to it. Generally, the side effects of melatonin treatment are relatively uncommon and mild in nature. Melatonin, however, isn’t used to treat parasomnias — more so difficulties associated with sleep onset, or insomnia. Remember, melatonin is not a sleeping pill, but it can be a short-term way to help children sleep while establishing good bedtime routines or resetting sleep schedules, such as after vacations, summer breaks, or jet lag.
Dr. Feldman gives us a breakdown of melatonin and other medications parents can use to combat sleep:
Sleep and the IEP
Can students with sleep disorders receive IEP or 504 accommodations in school? Yes! While a sleep disorder diagnosis does not by itself qualify a child for an IEP, if a child is diagnosed with a sleep-related disorder, such as narcolepsy, sleep apnea, or excessive daytime sleepiness, alongside, say, autism, or if their sleep is affecting them in school, educational accommodations can be added to an IEP or a 504 plan. A child may qualify for an IEP under Other Health Impairment (OHI), which is a broad category that covers conditions that limit a child’s strength, energy, or alertness, such as ADHD, anxiety, bipolar disorder, or depression.
Sleep tips for parents, from parents
Having other parents who know what you‘re going through and can recommend what personally worked for them is like finding treasure. Here are some tips, advice, recommendations from the Undivided community:
Routine
- “When my kids got a bit older, letting go of there having to be a specific bedtime helped all of us. You can’t force sleep. I’m okay if my kids are up late sometimes.”
- “We started having a very fixed routine. We have a laminated schedule of things we have to do where they can peel off the item and move it when done (such as brush teeth, go to the bathroom, shower, put clothes away).”
- “Go to the last bathroom run at a certain time every evening.”
- “Earlier showers, because wet hair in particular is very excitable.”
- “Reading before sleeping. Friends use auditory sleep-time books.”
- “Only ask five questions before sleeping to limit ruminating ideas.”
- “Have what we are doing the next days and the week on a calendar so that we are not so anxious about what we are doing the next day.”
- “Look at pictures of places we are going the next day to prepare and decrease anxiety.”
- “My husband reads my son a daily devotional every night before bed and reminds him that no matter what the world thinks, he has a God-given purpose in life. (We love this one.)”
Screen time
- “I know this is not the case for most, but some screen time before bed helps calm both of my kids’ brains down enough so they can fall asleep easily. I know screens can have the opposite effect on many.”
- “Turn off devices 90 minutes before bedtime prep.”
- “The Sleep Stories on the Calm app were a game changer for my kids. My daughter needed to listen to several to finally fall asleep, but Moshi Twilight would put my son to sleep in about 10 minutes. If I was with him, it would often put me to sleep, too.”
Sensory
- “Sound machine/air filter.”
- “Blackout curtains.”
- “Eye mask.”
- “My son (11) still benefits from me scratching his back, arms, and legs at bedtime. This seems to put him into a deep state of relaxation.”
- “We use the canopy humidifier and essential oils.”
- “If you child is afraid of the dark, make sure to keep their room simple and free from things that can give a shadow that may scare your child. (As much as my son loves the NBA, we found that huge posters of players in his room were a little freaky at night with all those ‘eyes’ looking at him. So we found that logos were a little less intimidating for him at night.)”
- “Red nightlights help my son feel safe while not disrupting sleep.”
Melatonin
- “Our pediatrician suggested we try melatonin but cautioned against consistent use. It helps as a sleep reset from time to time.”
- “Microdosing melatonin (0.25 to 0.5 mg) did much better than what was suggested, which would cause vivid dreams. Only as needed.”
Key takeaways: you don’t have to struggle
The last bit that all our experts want to tell parents is that if your child is struggling with sleep, whatever that may be, you don’t have to struggle and you don’t have to tackle it alone.
Ask for help. As Dr. Feldman says, “That's one of the keys: you don't have to struggle; ask for help. Now you could ask for help from friends, family, blogs on social media, and get success stories. But also don't hesitate to seek help from a professional. There's nothing worse than families that just struggle and struggle and struggle, and you just see the effects that it has on the whole family. So don't hesitate. If your child is not sleeping, don't hesitate to get help.”
Dr. Wang agrees, saying “It's a lot of work taking care of kids with disabilities, so getting as much help as you can from family, friends, and different services, right? I think sometimes that piece gets overlooked because parents sometimes put so much of their energy [and] time on the kid, that [sleep is] sacrificed so much. But I think that's a piece we don't think about. They are tired, too.”
Create your own self-care and sleep hygiene practices. Dr. Wang tells us, “We focus on the child's sleep, but what about the caregiver's sleep? Because if the child is up, I'm assuming mom or dad or caregiver is also up. They're worried, they're stressed. It's really common for a caregiver to report feeling exhaustion and burnout from taking care of their child with a disability. Kids’ sleep is really important, and of course we want them to have a good night's sleep and learn the skills of a good night's sleep. But it also comes from ourselves, from the family, right? If mom or dad or caregiver is exhausted and stressed out, a child might be young and they might not know exactly what's going on, but they can feel the energy of the parent’s stress, and that just kind of compounds the issue. So it’s important for parents to have good sleep routines, sleep hygiene, and take breaks when they can.”
It doesn’t always have to resort to medication. Dr. Feldman says, “Help does not always have to be a medication. I think a lot of parents are concerned, ‘Well, my child's not sleeping. I'm gonna go to a doctor. They're just going to tell us they're just going to prescribe something.’ It doesn't always have to be like that. My approach is to avoid medication as much as possible. Sometimes parents actually come and they are so desperate, they've tried everything and they're actually open to medications. And everybody's different and there's no judgment here. But it is very difficult and it's very complicated.”
For more information on sleep, head to our article Sleep Issues in Children with Disabilities.
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