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Sleepless in Dallas-Fort Worth

It was still dark out when the door to Dawn Ratzlaff and her husband’s bedroom swung open. The couple’s then 5-year-old son, Enoch, stood in the doorway clutching a toy and smiling. Though he’s minimally verbal, it was apparent that he was ready to start the day. The problem? It was 3am.

“He’s always been an early riser,” the Dallas mom explains. “But when he gets up, he’s very persistent. He wants us to play [with him] and give him our full attention.”

Enoch, who is on the autism spectrum, can’t seem to stay in bed, and his pre-dawn risings soon became a problem for the entire family. Not only were Ratzlaff and her husband sleep deprived, but Enoch’s twin 18-month-old brothers, Titus and Malachi’s slumber suffered too; they were often awakened by their brother’s loud play — he makes sounds, sings and bangs toys together.

Unfortunately, sleepless nights aren’t that uncommon in children, especially in children with special needs. According to Dr. William Brown, Children’s Health sleep psychologist and assistant professor of psychiatry at University of Texas Southwestern Medical Center in Dallas, more than 30 percent of children have trouble sleeping, and that number is much higher in children with special needs, medical issues and disabilities.

“Some studies show that as many as 80 to 90 percent of children with autism have chronic sleep difficulties,” Brown says. “So this is not a trivial problem.”

In fact, research shows that trouble staying asleep or frequent night wakings is the No. 1 sleep issue for kids with special needs. Other slumber difficulties include problems settling down, irregular sleep patterns, sleepwalking, night terrors, daytime sleepiness, sleep apnea and snoring. And unfortunately, for most kids — and parents — these sleep issues occur every single night.

Why these sleep issues occur
Some special needs sleep problems may be the result of underlying medical issues such as food and/or environmental allergies, intolerances, gastrointenstinal disturbances and seizures. Others are almost inherent.

Tonya McLouth’s 20-month-old daughter, Addison, has Down syndrome as well as a rare heart defect and a large hole in her heart that affects all four chambers, which required a shunt and a full heart repair last year.

Before the surgery, Addison suffered from sleeping and breathing issues, plus she had very bad acid reflux.

“For [the first] 12 months [of her life], we had to prop her up at a 45-degree angle to help her breathe [when she slept] so that she wouldn’t asphyxiate if she vomited,” the Prosper mom recalls. “But she hated sleeping in this position. She would snore and breathe loudly, so she would wiggle her way down until she was flat on her back. We had to wake up every hour to make sure she was still propped up. So she wasn’t sleeping well and neither were we.”

Dr. Keisha Shaheed, a physician in the Sleep Disorders Center at Children’s Health and associate professor at UT Southwestern, who specializes in sleep medicine, says that snoring and breathing issues such as sleep apnea aren’t uncommon in children with special needs, especially those with craniofacial abnormalities like Down syndrome.

To be sure, research shows that nearly all children with Down syndrome suffer from sleep apnea, a condition where the airway collapses every few seconds or minutes, the brain’s not getting sufficient oxygen and the child has to subconsciously open his airway. That’s because children like Addison, with Down syndrome, tend to have larger tongues, a smaller mid-line face and lower muscle tone, making them more prone to sleep-disordered breathing and apnea. (Addison, luckily, doesn’t suffer from either anymore.) “Which is why the American Academy of Pediatrics recommends that 100 percent of children with Down syndrome go through a sleep study,” says Dr. Mohsin Maqbool, a neurologist and sleep specialist at Texas Child Neurology in Plano and the medical director at Pediatric Sleep Institute, also in Plano.

Kids with cerebral palsy, spina bifida and other conditions associated with midline deformities and low muscle tone also have higher rates of sleep apnea. Symptoms include snoring, mouth breathing, restless sleep, sweating, night wakings and/or frequent coughing or choking while asleep. Parents should definitely see a doctor if they suspect their child suffers from sleep apnea.

As for kids with autism spectrum disorder (ASD), like Enoch, researchers don’t know for sure why they have problems with sleep but offer several theories.

“Children on the spectrum have varying degrees of anxiety,” Maqbool says. “And nighttime may be the worst time for them.”

Another theory has to do with environmental and social cues. Part of a normal childhood involves sleep entrainment, learning to wind down in the evening. Typical children know it’s time to sleep thanks to the normal cycles of light and dark and the body’s circadian rhythms. Kids with autism — who often have difficulty communicating — might miss or misinterpret the cues to quiet down for bed, says Dr. Hilary Pearson, medical director of the sleep center and sleep laboratories at Cook Children’s Hospital in Fort Worth.

A third theory blames the hormone melatonin, which normally helps regulate sleep-wake cycles. Typically, melatonin levels increase at night and dip during daylight hours, but studies show that some children with autism don’t release melatonin at correct times during the day, so levels may spike during the day and fall at night.

And finally, there’s the thought that an increased sensitivity to outside stimuli, such as touch or sound, might play a large role in sleep disorders in kids with ASD. Certain textures might arouse rather than relax your child, for example.

The effects these disorders can have
In the short term, Pearson says sleep deprivation in kids with special needs might make daytime therapies less effective. “Parents send children to all sorts of therapies in an attempt to help improve their condition,” she explains. “But a child who isn’t getting enough sleep at night is likely sleepy during the day and unable to fully participate in treatments.”

Long term, “sleep affects development,” Maqbool stresses. Kids don’t physically grow as much when they miss out on sleep, and sleep problems in the present typically mean sleep problems in the future too.

Not to mention that sleep deprivation in children with special needs can worsen the symptoms of their existing medical or behavioral problems. A lack of sleep has shown to lead to aggression, depression, hyperactivity, increased behavioral problems, irritability, inability to manage impulses and poor learning and cognitive performance.

The ongoing presence of sleep apnea can lead to ADHD, depression, diabetes, obesity and hypertension down the road, Maqbool warns.

Plus, as parents like the Ratzlaffs know, if your child isn’t sleeping, there’s a good chance you aren’t either.

So what can parents do?
Keep a sleep diary for at least two weeks, Maqbool advises. “A sleep diary helps you understand your child’s natural rhythm,” he says. “Eighty-five to 90 percent of the time a child with special needs isn’t sleeping, it’s because of reflux, sleep apnea, restless leg syndrome, separation anxiety, bladder awareness, teething or other disorder.” So keeping a journal helps parents pinpoint any unusual patterns in their child’s sleep. Plus, as you try routines, behavioral modifications or dietary changes to help your child sleep, you can note whether they work consistently, sporadically or not at all. You can also show a sleep diary to professionals involved in your child’s care to give them a clearer picture of the impact a sleep disorder might be having on your child.

Establish a routine
Set a standard bedtime and wake-up time. “Lots of parents let their kids sleep in after a rough night,” Pearson says. “But you’re only setting them up to stay up late again and want to sleep in again. Instead, wake them at the same time in the morning even after a really tough night.”

The routine needs to be one that you can use every day and anywhere. “The nighttime schedule needs to consist of a sequence of predictable events so the child can predict what comes next such as falling asleep,” Maqbool explains.

Start the routine as soon as the child gets home from day care or school. An example might include playing, doing homework having dinner (try starting this at least two hours before bedtime and adding proteins like two eggs, even a handful of nuts to the meal to promote deeper sleep) followed by quiet time, a drink of water, bathtime, teeth brushing, bedtime and then waking up in the morning at a designated time such as 7am.

Present the routine visually. Take pictures of your child doing each of the tasks, and go into a lot of detail. For example, include a photo of your child turning the lights off, lying down, pulling the covers up, etc.

“Read the same book every night,” Pearson suggests. “Kids will associate this with going to bed.”

Monitor outside stimuli
Ensure your child is getting enough exercise. Maqbool recommends at least 15–20 minutes of some form of physical activity, at least two to three hours before bedtime, to improve sleep quality at night.

Avoid caffeine at all costs and anything else exciting. “Nighttime should be slow and boring,” Maqbool explains. “Don’t read books that excite the kids.”

Shut down television, video games, and other stimulating activities at least an hour before bedtime. (This goes for you too, Mom and Dad; practice what you preach.) And keep tablets and other electronic devices out of the kids’ rooms.

Because light affects the brain, Maqbool suggests keeping lights in the house dim from sunset on each evening.

If your child requires a nightlight to sleep, it should be dim and red, not blue or white, which can affect the body’s circadian rhythm and keep kids awake.

Consider noises such as running water that might not affect others in the house but can be disruptive for a child with special needs. Sometimes a fan, air filter, soft music or white noise can help mask other noises and create consistent sound in the child’s bedroom.

Sleep training
A lot of children perceive bedtime as a “time out,” Brown notes. They lose access to their parents, their toys and their electronics.

To help ameliorate their fear of being alone, Brown suggests using what he calls the “excuse me” method.

“While the parent is putting the child to bed, they will periodically make an excuse to leave the room,” he says. “The first time you walk out and then immediately come back into the room. Each time you stay away a little longer. You’re trying to time this so that the child falls asleep when you’re out of the room.” After a few nights of this method, the child should realize that they can fall asleep on their own, and so when they wake up in the middle of the night, they should remember that they can go back to sleep without your help.

Pearson says rewarding behavior you want to be repeated can be effective too. “If your child wakes in the middle of the night, return him to his own bed, a process you may have to repeat several times a night at first,” she explains. “Once he starts staying in his bed the whole night, give him a reward in the morning.”

Brown suggests building on the rewards as incentive to repeat the remaining-in-bed behavior. “Maybe your child gets a sticker if she stayed in bed the first night,” he says. “After three nights, maybe she gets to request a special meal or more time on the computer."

If you’ve tried all this and your child is still having sleep troubles, talk to your pediatrician about melatonin. Though deemed safe by the medical community since the body naturally produces it, Maqbool cautions that it’s not without its side effects. “Melatonin is known to cause precocious puberty, or the coming of age too early and GI disturbances as well,” he warns.  

But it has proven to have a mild sedative effect in prepubertal kids at doses typically 3mg or less, Pearson says.
Even Maqbool recommends melatonin for short, finite periods of time. He says he’s seen tremendous success using melatonin for three months with 100mg of 5 Hydroxy-Tryptophan, a natural, high-protein supplement.

Brown agrees. Melatonin can be a viable option for children with special needs if they are having trouble falling asleep — it won’t work for kids who wake up in the middle of the night.

The objective with using a substance like melatonin is to assist the child’s natural body processes, not to put them to sleep.

Seek help
When all else fails or if your child seemed to be making progress and then begins to regress again, talk to your pediatrician, Pearson recommends.

Maqbool advises parents to do lots of research before talking to the pediatrician about sleep. “Ask very specific questions,” he suggests. “And provide very specific information. For instance, say, ‘my child complains about leg pain and kicks during the night. Can we check his iron, thyroid and vitamin D?’ Don’t let the doctor tell you it’s just growing pains.”

You may also want to seek the help of a sleep psychologist or other sleep specialist. (See the sidebar to find one near you.)

The Ratzlaffs have been getting better sleep for the last month and a half. Enoch, now 6, still rises before the sun, but on the advice of his pediatrician, his parents lock his bedroom door from the outside, safely confining Enoch to his room so he can’t injure himself or get into trouble roaming the rest of the house.

“I still hear him when he gets up,” Ratzlaff says. “And I usually don’t go back to sleep, but I can see him playing by himself on the video monitor. Then he knocks on the door when he’s ready to get out, which thankfully happens later than 4am.”