A Good Nighttime Routine Helps My Angel Find Her Sweet Dreams

Children with Angelman syndrome are known to have sleep issues, and I have heard and read trying tales about problems some families have encountered. But my 11-year-old Angel, Juliana, is a sleeper.

We don’t hypnotize her or use anything special, and I wonder if her ever-improving sleep is the result of her nighttime routine, her ability to communicate better, or her age. Since she was a baby, we’ve followed all the recommendations for getting a good night’s rest. For us, that includes the same routine: a bubble bath, reading, prayers, light music, and then lights out. We also work to keep our bedtime routine when we travel.

I’ve counted my blessings for years about Juliana’s ability to sleep well, but it took participating in a sleep study for children with Angelman syndrome to show me just how well she does sleep.

As part of the study, we logged what time she went to bed and what time she got up each night for a year in order to track how many hours of sleep she was getting. If she got up during the night, we recorded that, too.

Logging her sleep helped to prove what I had suspected: Juliana enjoys many nights of uninterrupted, peaceful sleep, and the nights when her sleep was interrupted or delayed were the exceptions, not the norm.

Recommended Reading

October 7, 2021 Columns by Sabrina L. Johnson

When Perfect Plans Fail, Just Do Them Over

Getting her zzz’s

Up to 80% of Angels have sleep issues, so Juliana would be considered an exceptional sleeper. Sleep issues for Angels include difficulty falling asleep and staying asleep, and abnormal sleep patterns. Juliana gets about eight to 10 hours of sleep each night, which puts her right in line with the recommended amount for kids her age. I am very happy about this. 

Juliana reads with her dad at bedtime as part of her nighttime routine to help her get to sleep. (Photo by Sabrina L. Johnson)

However, Juliana’s blissful sleep story didn’t happen overnight.

When she was little, before she had been diagnosed with Angelman syndrome, she experienced reflux problems, and as a result, had some difficulty sleeping. We worked hard then to get her on a sleep schedule, and as I look back, I think perhaps not knowing she had Angelman syndrome was a good thing. I might have felt that getting her on a sleep schedule was not possible, given how the much sleeping is a problem for so many Angels. I think not knowing helped make it possible for me to believe Juliana could get to sleep.

Awake for a reason

Juliana does have some restless nights, of course. When they happen, I try to resolve what’s keeping her up. When she was younger and couldn’t sleep, she would scream, but as she has gotten older her sleep has improved and she is able to communicate what is bothering her. That was one of my big discoveries during the sleep study.

When she would scream, I knew there was something wrong, but Juliana was unable to tell us what it was. Now that she is older, I know that if she is up, there is probably a good reason for it, and she is able to tell me what’s going on with the help of her augmentative and alternative communication device. Just last week, she used the device to let me know that she was hungry, and that her sleep suit was bothering her. 

I’m proud of Juliana for using her device in such a smart way. She’s growing up. But I’m glad she’s not growing out of a sleep routine that still works to lead her to sweet dreams.

***

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.