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Why My Child’s Sleep Problems Just Can’t Be ‘Put to Bed’

As I write this, I am running on empty. Ample sleep has not come in some time, and I’m not sure when I’ll get back on track. Life is busy. Work is busy. My brain is busy, and so is the brain of my young child, who recently hasn’t been sleeping well after months of being a great snoozer. As the primary parent to a child with a disability, I depend on sleep to keep the both of us grounded.

See, my son has a condition called Angelman syndrome (AS), a rare neuro genetic disorder that causes global delays, afflicted motor coordination, renders him incapable of vocalizing words and, at times, causes seizures. And if that laundry list isn’t enough, the icing on the cake of this hard-knock diagnosis is that AS is also classified as a sleep disorder.

According to Terry Jo Vetters Bichell, whose son Louie, 19, has Angelman syndrome, the causes of sleep disorders in AS are multi-fold and can be pinned on numerous things including circadian abnormalities, excess excitatory transmission, seizures, and behavioral issues.

Research studies estimate that between 20-80% of young children with Angelman syndrome experience sleep difficulties, with the majority of sleep disruption occurring between the ages of 2 and 6. According to professor Bernard Dan, a pediatric neurologist at the Universite Libre de Bruxelles in Belgium via a public video on YouTube: “My feeling is that people with AS find it difficult to surrender to sleep. This has to do with their general development and general lack of muscle tone (hypotonia), which is one of the reasons why you see them moving all the time  –to create muscle tone. It seems to be difficult for them to let go.”

According to Dan, the best way to help children with AS achieve optimum sleep is to have very firm routines around their sleep schedule.

Schedules help, but there are still the immense issues that contribute to disrupted slumber we can’t ignore. Routines are often supplemented with medicines, special diets and, in the case of my son, extra activities and exercise to wear him out.

It goes without saying that living without sufficient sleep is a hard cross to bear and one that is not easily resolved. In fact, prolonged lack of sleep leads to cognitive impairment, including difficulties with concentration and memory retention and, in more severe cases, chronic illness and other dire health issues. For families and children who experience a constant lack of sleep — well, life only becomes more compounded and complicated.

What does this ongoing disruption of rest mean for children with AS?

According to Angelman-related literature, sleep problems with our children can’t just be put to bed. The degree to which sleep evades children with AS is enormous, and can include everything from difficulties with falling asleep to reduced sleep time, bedwetting, waking during the night, terrors, and even sleep walking. Like typical children, youngsters with AS also don’t like to stay in bed and are often try to escape their beds or rooms to seek stimulation via toys, electronics, water, and even outside spaces. My son, as well as many other children with AS, sleeps in a specialized safety bed that keeps him enclosed and safe during the night.

In our community, the struggle with sleep is more than real.

“From the day our son was born, sleep became a quick nap here and there. He can survive on so little sleep; it’s a wonder to me, especially sine he is active as well,” said Kathleen Caterson of her son, who is 20.

Nicola O’Dean has a similar situation. “My daughter Anaiyah can survive on little sleep. Unfortunately, I can’t. I find it extremely hard to function, myself and my husband hold down full-time jobs with sometimes only four hours of sleep a night.”

“It (more sleep) would make my head less scrambled mentally. Being so sleep deprived is seriously not healthy. There are days I forget what I’m doing or what I want to say during conversation due to complete brain freeze. Also it would help me to get some more energy to cope with all the other, not Angelman related things, like housekeeping, being social, being able to function in the relationship with my man,” says Elizabeth Vatle Helgesen.

I, for one, have always appreciated sleep, and I don’t take for granted the benefits of rest, now that it’s barely a luxury anymore. Sometimes, lost sleep is the hardest part of raising a child with AS, and it’s not easy for our kids either.

Thankfully, there are pharmaceutical trials in place to alleviate this facet of the condition and it looks like someday soon we might not have to choose between sleep and spending that time on other things, like working out or socializing or reading.

Kara Van Roten sums this sentiment up nicely: “As it is, I find myself negotiating – with myself – each night as to whether I take a little ‘me’ time before I hit the sack or simply get to bed as soon as Henry (age 4) is asleep to maximize my hours of sleep. Do I take an hour to read, watch a TV show, catch up with friends or peruse my FB feed? Typically, no. Sleep is more important than all those things. Over time, I feel more disconnected and less human. It’s like Groundhog Day every morning. A guaranteed extra three hours of sleep each night would allow me to not make those concessions and actually feel like a rested person.”

With therapeutics on the horizon, does this give us — the caregivers and families, and the children themselves — permission to hope that sleep will improve over time? That perhaps it’s not something that won’t just be outgrown, but fixed entirely?  If so, I plan on sleeping as often as possible, without feeling guilty.

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