Sleep, glorious sleep (or the lack thereof).
I will share with all of you that for a long time I was in pursuit of this elusive dream, first with my eldest son who is severely autistic, and then with my youngest son who is on the mild end of the spectrum. There were many years I never thought any of us would see eight consecutive hours again, until finally both boys through a tenacious adherence to routine (and probably just plain old maturity) did learn to sleep through the night, for which their parents are eternally grateful.
At least, that’s what we thought.
I have to admit I wasn’t entirely certain how many z’s each boy was getting, so when I was approached by Dr. Amanda Bennett at Children’s Hospital of Philadelphia (CHOP) through the Autism Speaks/Autism Treatment Network about participating in a sleep study, I was thrilled. It seemed there was a way to find out for sure if all our hard work was really paying off for the boys, and I couldn’t wait to participate.
Our “investigator” was Dr. Margaret Souders, PhD and CRNP, who called me about participating in a study funded by the DoD whose goal was to see if kids with ASD sleep better with a home-based program adjusted to their individual needs.
It sounded like heaven to me.
Dr. Souders told me that studies have shown that up to 66% of autistic individuals have sleep problems, and that those problems are often linked with anxiety and hyperarousal issues. Apparently we all need a relaxed heart rate to sleep, and people on the spectrum often have a difficult time bringing down their heart rate. By measuring how much a participant slept, the hope was to create a sleep protocol tailored to them so they (and their tired families) would eventually sleep longer and better.
Forty families participated in the study along with ours, and the study itself took approximately 11 weeks to conduct. Participation involved filling out a medical sleep history, several questionnaires, an interview with Dr. Souders, several home visits, and a daily sleep diary for both kids. The really cool part was that each child wore an actigraph, or a small watch-sized computer that measured their movements at night for several weeks so that we knew down to the minute how much they were sleeping, and how long it took for them to put themselves back to sleep if they awoke.
If you’re thinking “my child will never wear it,” trust me, that was my first reaction too. The actigraph was sewn into my one son’s pjs, and into a t-shirt for my other, and neither complained a bit. According to Dr. Souders, 97% of the kids in the study have worn the actigraph without issue.
To my absolute delight we found that Justin, my eldest, was sleeping almost 10 hours a night, with infrequent wakings after which he always went back to sleep.
After years of struggle, that knowledge felt like winning the lottery.
I did discover, however, that my youngest son was having enough trouble falling asleep at night to qualify as having insomnia, so we needed to take action with him. We have now changed up his routine. We put him to bed later now, give him a hotter bath and a massage (I know, there is nothing we won’t do for our kids,) and rock him for a while before he attempts slumber. I got back the results from the actigraph the other day and our work paid off. While Zach still isn’t getting as much sleep as Justin, the quantity has increased and he no longer fits the criteria for insomnia.
Victory is sweet.
Dr. Souders’s ultimate goal is to train occupational therapists, nurses, and BCBAs to go into the home to help create individualized sleep protocols, and I am certain with the findings from this study she will be able to realize her dream for families. She strongly feels that while parents need to do some work to help their kids, that practitioners must meet families more than halfway.
And in this community, which is so devoted to its kids, I’m certain she will find many willing participants.
If you’re interested in participating in a sleep study, please contact Dr. Margaret Souders at (215) 898-1935.
Kimberlee Rutan McCafferty is the mom of two young sons on the autism spectrum, ages seven and eleven. She is a former educator and presently a stay-at-home mom/therapist. Kimberlee has been published in Exceptional Parent Magazine, and her blog is linked to multiple sites throughout New Jersey and Pennsylvania on Patch, an online source for community-specific news. Her post, “The Talk,” was selected by Autism Speaks as one of the top ten most informative and inspirational blogs of 2013. In 2012 she produced and directed a play about mothers raising autistic children, with all proceeds going directly to POAC Autism Services, a non-profit located in Brick, NJ. She participates in the Family Partners Program, a part of the Autism Treatment Network at CHOP (funded by Autism Speaks.) In 2014 she was honored to speak at the kickoff for the Philadelphia walk for Autism Speaks. All profits from her book, “Raising Autism” have gone directly to various autism-related causes.
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