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Sleep Disturbances in Children with Special Needs

By: Ratzy Simanowitz,

Published in Building Blocks, December 2010

The Little Night Prowler

Faigy Gluck was two when she began regressing in all areas of development. Having easily passed her early milestones, it came as a shock when she suddenly turned inward, gradually adopting the characteristic attributes of autism, with the attendant lack of eye contact and loss of verbal skills. According to Tzirel, Faigy’s eldest sibling, from when she was 2 ½ until she was admitted to the Higachi program at age ten, Faigy never slept for more than five hours a night, and more often than not, for no more than three. She’d go to sleep at 8pm only to awaken anywhere between 11pm and 1am. At first, Mrs. Gluck blamed it on the anticonvulsant Depakote which had been prescribed for treatment of Faigy’s daytime hyperactivity. But it soon became apparent that her nighttime insomnia was not caused by her medications and that Faigy, like many children with Autism, simply may not need as much sleep as her typically developing cohorts. Before long, the entire family, from eight year old Miriam to Tzirel, who was about fifteen, was recruited to do “Faigy time”.

Tzirel vividly recalls those nights in which Faigy would get up and try to leave her bedroom. It was her responsibility to engage her insomniac sister because once Faigy left the room, she was sure to awaken everyone in the house, including the out-of-town boys who slept in the family’s basement. Tzirel still chuckles when she recounts how once, when Faigy who was about five or six, she somehow slithered through the heavy door into the basement. It may have inadvertently been left ajar or little Faigy-turned- Houdini had somehow managed to pry it open. No one knows because she had sneaked off while the sibling left in charge of her that night had dozed off. When she tried to climb into one of the beds, the startled boy sleeping in the bed who happened to have a black belt in karate, thinking she was an intruder, almost hit her with a karate chop. Luckily, before striking, he took a second look and discovered that it was his landlord’s little girl who had somehow strayed into his sleeping quarters. Years later, one of those boys recounted how, as a teenager, he had come to New York to spend time with the Lubavitcher Rebbe because he was extremely depressed, even contemplating suicide. However, observing his host family’s devotion to their child with special needs changed all that. It taught him about human sacrifice and filial love. Gradually, his heart, once cold and despondent, grew warm and engaged. Now, over twenty years later, he is married with children, living in a warm and Torah observant home of his own. Tzirel recalls those earlier years in which night and day often segued into one big blur of fatigue. She readily admits that “it was not all that easy.” Staying up with Faigy for hours on end, night after night, took its toll on every member of the family. Try as she might, Tzirel would often nod off toward the end of her nighttime vigils, and that was usually when Faigy got into serious mischief. She would smear anything she could get her hands on, sparing nothing, not even the costly Persian rug in the living room. She had a particular affinity for the family’s fridge. When all was quiet and her caretakers stooped in deep slumber, she’d stealthily make her way into the kitchen and methodically empty its entire contents. She’d smear the cottage cheese and sour cream all over the kitchen. She’d crack every last egg and gleefully spread it over just about any surface she could reach.

During those trying years, everyone in the family was perpetually exhausted. Still, when Faigy was finally admitted to Higachi, and the nights at home once again returned to normal, Faigy’s mother felt no relief and was, in fact, inconsolable. As Tzirel tells it, after each lengthy school break, when Faigy would return to Higachi for a new semester, her mother “would cry for two days straight”, riddled with guilt that she was once again relinquishing her little girl’s care to strangers and missing her little girl intensely. Tzirel is awed by her mother’s selflessness; she doubts she would have persevered for as long as her mother had. But looking back, Tzirel is convinced that those early years had imbued her with the strength of character to persevere through her own personal challenges, and she is a better person for it. In a wonderful twist of fate, Faigy is now residing in a group home that faces her parents’ house, where her mother is free to visit her daily, allowing them to bask in their mutual love and affection.

Helpful hints for children with insomnia:

Note: Many children with ASD may need less sleep than their typically developing peers. It is therefore important to establish individual sleep needs and schedule bedtime accordingly, as putting a child to sleep too early can be counterproductive and create less, rather than more sleep.
-Rule out medical causes such as infection, pain, and GERD (gastroesophageal reflux disease) which often interfere with sleep. Sleep apnea manifested by snoring, gasping for breath, and/or bedwetting may warrant a visit to a sleep specialist
-Follow careful “sleep hygiene” practices:
-Dim lighting
-Quiet setting-a mild white noise machine may help keep out unwanted sounds
-Minimize stimulation at bedtime
-Comfortable temperature;
-Avoid excessive heat and cold
-Comfortable sleepwear
-Allow the child to sleep with a favorite blanket or stuffed animal
-Child’s bed should not be used for anything other than sleep. This means not using the bed for play time, timeout, or any other non-sleep activities.
-Encourage exercise and outdoor play during daytime hours; avoid these within three hours of bedtime.
-Maintain consistent bedtime and wakeup time; avoid daytime naps.
-Eliminate or greatly reduce caffeine intake.
-Teach your child to fall asleep with minimal input on your part. The best is to leave the room, or at least avoid all forms of touch after the child has been put to bed. If the child is used to having you in the room, sit next to the bed and each night, move the chair closer to the door until it is no longer in the room.
-Encourage your child to stay in bed, and if your child does get out of bed, stay calm and promptly put him back to bed; minimize conversation.
-Provide small rewards when your child sleeps through the night.
-Above all, be patient and don’t despair! Rather than implementing all changes at once, try one small change at a time.

Melatonin : A miracle drug for children with insomnia?

According to the Journal of Child Neurology, insomnia is a common sleep concern in children with ASD (autism spectrum disorders) and it is thought that melatonin, a naturally occurring substance that helps regulate sleep, may be lower than in typically developing children. A study involving 107 children ages 2—18 years of age with a confirmed diagnosis of autism spectrum disorders showed significant improvement in sleep when taking melatonin. Only 3 children had mild side-effects such as morning sleepiness and increased enuresis (bedwetting). Most importantly, there were no negative interactions between melatonin and the various psychotropic drugs many of the tested children were taking, nor was there an increase in seizures in those with seizure disorders. Daytime behaviors were reported to have improved as well with use of nighttime melatonin, leading to positive effects for the entire family. Based on these findings, Melatonin has been deemed a safe and well-tolerated treatment for insomnia in children with autism spectrum disorders, although more studies are needed to establish safety and efficacy. As with all drugs and nutritional supplements, parents are urged to consult with their child’s pediatrician regarding the use of melatonin.

Ratzy Simanowitz, RN is a nurse at Ohel Bais Ezra. With over four decades of experience in caring for those across the spectrum of developmental disabilities, OHEL Bais Ezra has elevated and enriched the lives of thousands of individuals and families. OHEL Bais Ezra offers parents much sought guidance and clear direction and we are able to tailor programs that meet the specific needs of each individual and optimize their potential. OHEL Bais Ezra continues to break down barriers and stigma associate with developmental disabilities and nurture a more informed community where such individuals can thrive and realize their potential. For more information, Call 1.800.603.OHEL web: ohelfamily.org Facebook: facebook.com/ohelfamily

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