Resource Finder at Kennedy Krieger Institute
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Sleeping: Getting There and Staying There
Any parent who’s ever struggled to put a child to bed— whether as an infant or a teenager—knows well the effects that poor sleep habits can have on an entire household. For some children the trouble might be something as common as difficulty falling asleep. For others, perhaps night terrors or sleep walking. In children with developmental disabilities, sleep disorders are all too common and run the gamut.
In fact, says Dr. Jennifer Accardo, name a developmental disability, and there is probably a set of sleep problems that typically accompanies it.
An estimated two-thirds of children with developmental disabilities suffer from some form of sleep disorder or problem—a significantly higher number than the 30 to 40 percent of typically developing children with sleep issues. And for parents who are already trying to cope with the challenges of raising and caring for a child with a developmental disorder, sleep struggles—and the related health and behavioral problems they can cause—are one more uninvited worry. “One of the huge problems resulting from a child not sleeping well is that it affects their entire family,” Accardo says. “Because when there’s a child awake, what you also get is a parent who’s awake and trying to cope with the child. Then you have a sleep-deprived parent with that much less energy to devote to parenting an already challenging child.”
“It’s very widespread among our patient population,” says Accardo, a neurologist and sleep specialist who oversees the Institute’s Sleep Center and Lab. “Many of the kids here tend to be ‘all of the above’ kinds of kids. It’s not just snoring or airway obstruction, it’s also behavior, it’s a bit of everything,” Accardo explains. “That’s why a big part of our program is based on neurology and behavioral psychology working together. The kids who come through the Sleep Center really experience both aspects of care.”
With so many of these children experiencing sleep issues, it makes sense, then, that physicians at Kennedy Krieger—whether they specialize in Down syndrome, cerebral palsy, autism, or other disabilities—often encounter sleep problems in their patients. For these physicians and the families they work with, the Sleep Center offers something more. “We are specifically interested in working not only with children with disabilities who have sleep problems, but also their families,” Accardo says. The entire family, after all, can be affected by a child’s sleeping troubles, and likewise, can play a role in the solution.
These are children with complex problems, she explains, who, in addition to sleep-related difficulties, may present a variety of physical or behavioral problems that complicate the issue even further. “Any sleep clinic you go to will see some kids with disabilities,” Accardo says. “But they’re really the focus of this clinic. That’s who we see, and it’s what we’re about.”
Some of the issues the clinic often sees are difficulty falling and staying asleep, chaotic or disruptive sleep patterns, unusual behaviors during sleep, and snoring. The sleep center’s team offers both medical management and behavioral interventions, depending on the child. “A lot of clinicians tell us, ‘I have this one patient who has never slept very well, he’s doing this unusual thing when he sleeps, nothing is working, his parents are at the end of their rope, and we just can’t figure it out,’” Accardo says. “It’s these types of complex kids who we are set up to see.”
One beneficial aspect of the program is the clinic’s Sleep Lab. Staffed by pediatric neurologists with expertise in sleep medicine, the Sleep Lab offers studies that can incorporate both polysomnographic and EEG technology. The lab also plays an important role in the clinic’s treatment approach. “Our lab is geared toward children with disabilities and staffed by technicians who understand these kids and are familiar with their unique neurological and behavioral challenges,” Accardo says.
In addition to the technical benefits offered by the lab, the program’s behavioral psychology component plays an integral role in treating children, whether by modifying their environments and shaping better sleep habits, or by preparing patients for the unusual experience of a sleep study, during which multiple monitors are attached to the child. “We want to see kids who, because of behavioral challenges or other problems, would otherwise have difficulty getting through a sleep study,” Accardo says.