Dreaming of Sleep

By Melissa Martz

“Sleeping like a baby.” We’d all love to look down on our contentedly slumbering child and be able to say those four little words. But it’s not always easy—especially when a child has a disability with underlying conditions that affect sleep.

Approximately 25 to 40 per cent of all children have sleep disorders—disrupted sleep patterns, which include trouble falling or staying asleep. And the consequences can be greater than just having to deal with a cranky child in the morning (which is no small task in itself). A lack of sleep affects learning, memory, behaviour and attention. It can also disturb family functioning, because if sleep issues are present in the household, everyone feels it.

Where children with disabilities are concerned, physical factors can add to sleep difficulties. Seizures, restricted movement, pain, reflux, nighttime feeds, side effects of medication, light/dark perception difficulty, and sleep apnea (disrupted breathing at the level of the brain or by obstruction in the throat) are not uncommon with conditions such as cerebral palsy and other neuromuscular disorders. Some of these physical issues can be addressed with the help of your child’s physician or healthcare provider.

A potential issue for children with a developmental disability is that the maturation of the sleep/wake (circadian) cycle can be delayed. With a circadian rhythm sleep disorder, the child wakes at the “wrong time.” It is estimated that 52 per cent of children with autism and 57 per cent of children with intellectual disabilities have sleep difficulties.

“Our sleep pattern is dependent on brain function,” says Dr. Janet Speight, director of medical services at KidsAbility Centre for Child Development in Waterloo, Ont. “In children with disabilities, there is more commonly altered brain function. In developmentally delayed children or children with neurological disabilities, they tend to have a delayed onset of sleep, they awaken frequently and their sleep is of short duration. Sometimes they are not sensitive to the cues for sleep, and it is more difficult to teach them sleep hygiene.” Good sleep hygiene refers to a consistent bedtime routine—for example: having a bath, putting on pyjamas, brushing teeth, reading a story, and then turning the lights out.

Jonathan Chapman, 11, of Vancouver has Down syndrome. He has had sleep difficulties from birth. “When Jonathan was a baby, he often didn’t require much sleep or just couldn’t get it. He was just that kind of baby,” says his mom, Lisa Clarke. “We averaged about five hours of sleep a night, with no naps during the day.”

Jonathan’s Down syndrome predisposes him to be a mouth breather because of a larger tongue and adenoids. He also has relatively small airways, ear canals and nasal passages. Obstructions of these areas have led to frequent infections that require antibiotics and a nebulizer to administer medications such as Ventolin and Pulmicort in the form of a mist to be inhaled. Jonathan needs the nebulizer often from October to February every year. The family’s longest stint with the device was 16 consecutive weeks, every four to six hours…around the clock.

Clarke has tried many methods to ease Jonathan’s sleepless nights: removal of his adenoids, saline mists, walks outside at all hours (preferably in the fog or rain), nasal sprays, ear tubes, and a natural product to complement the hormone melatonin, which our bodies produce in darkness, in hopes that he may sleep longer. While nothing has been a panacea, the problem is getting better as Jonathan grows older.

For parents who are going through sleepless nights with their children, there are strategies that can help. According to Dr. Shelly Weiss, a neurologist in the Department of Pediatrics at Toronto’s Sick Children’s Hospital and author of Better Sleep for Your Baby & Child: A Parent’s Step-by-Step Guide to Healthy Sleep Habits, “It’s all about reading up on sleep hygiene and behavioural strategies used in typically developing kids.”

Weiss’s tips for getting a better night’s sleep hold true for all children. She advises keeping a consistent and predictable bedtime routine. A bath, book or song every night can signal to your child that he or she is about to sleep. Minimize environmental factors and distractions that can contribute to sleep problems: noise, high room temperature, TV, light, room sharing and changing sleep arrangements, for example. If a child insists on having a night light, use a red one, which won’t interfere with sleep.

If there are medical concerns such as night seizures or medications that need to be administered at set times throughout the night, then an individualized sleep plan needs to be determined by parents together with the child’s healthcare provider. Parents can take turns tending to the child to ease the load. “Try to give each other a break,” suggests Speight. “Maybe one parent is better early in the morning, while the other handles the slow-to-fall-asleep child more easily.”

Clarke reminds parents that they know their child best. “You need to truly be able to work with your doctor, which means you need to ask questions, get answers to those questions, and see specialists if necessary. Talk to other parents about what has worked for them. You may have to try several strategies before you find one that works for your family.”