“I love sleep. I need sleep. We all do, of course. There are those people that don’t need sleep. I think they’re called ‘successful.”
― Jim Gaffigan, Dad Is Fat
According to Jim Gaffigan, I’m not a successful person. I absolutely need my sleep. Actually I’ll disagree somewhat with Jim, because I think I’m a successful person when I get my 8+ hours a night. With 4 kids over the age of 8 that shouldn’t be a problem, right? Wrong.
I could never have imagined how hard it would be to have a child with sleeping difficulties. Several years ago, bedtime was the biggest relief. It was a time of relaxation and unwinding. I could catch up on my inbox and read my book or watch my show, knowing that John was tucked away in his bed. Over the last few years, though, “bedtime” has slowly lost it’s magical quality. During one of our all-nighters with John recently, I read on “Autism Speaks” that “over half of children with autism – and possibly as many as four in five – have one or more chronic sleep problems.” I know children with other diagnoses who have sleeping issues as well. My in-laws didn’t sleep regularly the entire 44 years they were caring for their daughter who had cerebral palsy. My guess is that a lot of you reading this aren’t sleeping regularly either.
A bad night for us leaves me feeling empathy for Christian Bale’s character in The Machinist. After we put John to bed around 9:30 or 10pm, we listen hopefully for signs that he is falling asleep. If we reach 11pm and he is still stimming or becoming even more hyper than he was when we put him to bed, we start to worry. If the party’s still going at midnight, we’ve already cleaned up a disaster that involved a bodily function, and hyperactivity levels have reached an all time high, we can kiss a good night’s sleep goodbye. Occasionally this all nighter will last, literally, the entire night. Ironically, John is even more hyper, and his behaviors are more extreme following a night of no sleep. Even worse, this sleeping strike can sometimes last for days at a time.
What is a sleep deprived parent to do? Below is a list of what we’ve tried, in order of desperation.
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- Play calming music for him
- Turn on his white noise app
- Give him melatonin
- Let him watch his ipad
- Don’t let him watch his ipad
- Give him water
- Offer him food
- Give him more melatonin
- Change his pull-up, his sheets, and his blanket
- Sit in his room and tell him to get back in his bed
- Don’t sit in his room and don’t say anything
- Give him a warm shower
- Give him a cold shower
- Give him yet another melatonin
- Lie in his bed next to him
- Take him on a drive
- Take him on a walk
- Give him benadryl (this one can really backfire on you)
- Give him *lorazepam
- Take him to the Emergency Room
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*I’m not endorsing the use of a prescription drug to be used as a sleeping aid for your child, especially to be used regularly. Always talk with your child’s doctor.
If that last one shocks you, I’m sorry. If it doesn’t shock you, welcome to the club. You’re in good company. Unfortunately, all the Emergency Room had to offer us was a germy room for him to bounce off the walls in, an uncomfortable bed that he didn’t want to sleep on, and a liquid combination of number 18 and number 19 (refer to the list above) that he spit out on his hospital gown. I don’t think I was expecting the ER doctors to do anything miraculous, but it just seems like the ER is the right place to be when all hope is lost.
We have all experienced the physical consequences of not sleeping. As much as I love it, Diet Coke will not make up for a lost night of zzzz’s. There’s really not much you can do besides gritting and bearing it and apologizing to your co-workers and family for your groggy behavior. As bad as the brain fog is though, the mental repercussions of not getting enough shut-eye are even worse. Feelings of depression and anxiety are heightened, especially when you’re dealing with a situation that you don’t know how to solve. Do you remember that time you cried on someone’s shoulder because your newborn baby wouldn’t sleep and you never thought you would sleep again? That person most likely told you that your child would be sleeping through the night by the time he/she left for college and that you’d be fine eventually. For us, and my fellow parents with special needs kids, that newborn stage comes back to haunt us. In fact, it’s a real life recurring nightmare. We never fully left it behind, and we are never guaranteed that full night of sleep that we desperately long for.
It’s no secret that two of my greatest heroes are my in-laws. Danny wrote about them here when his sister passed away. Last summer we were excited to be able to spend a week with them at a lake house in New Hampshire. The whole family was there, and we had all been looking forward to a week of boating, eating, singing songs with Nana, talking, getting some sun, and enjoying being together. Unfortunately, our plans took a detour when John went on a sleeping strike. **I need to clarify here that we don’t blame him for not sleeping. We know it’s not his choice and he really can’t help the way his body operates.** The room we were sleeping in (or I should say the designated space we were given to pretend we were sleeping but in actuality were trying to solve one of life’s greatest mysteries) was directly above my in-laws’ room. After two straight nights of turture, we called it quits on the 2nd night at around 4am and took John on a drive. We treated ourselves to an hour-long scenic tour of the lake from our rental van, and then because we felt really sorry for ourselves, we stopped at Dunkin Donuts. A few boston creams later, we turned our van in the direction of the lake house.
Dawn was settling on the well rested population of New England as we drove resentfully back into town. Only a few minutes into our return trek, we spotted a silver mini van in the deserted parking lot of a sad looking sushi restaurant. Standing in front of the minivan were my in-laws.
It was no surprise that they hadn’t slept much either. They were fully aware of the night we had experienced, having heard all of it from the room below. Having spent many nights caring for a special needs child of their own, they had experience with sleep deprivation, and they empathized with our frustration. Wanting to help, they tried chasing us down after we abandoned ship. Not knowing where to find us, though, they resorted to camping out in a parking lot that we would have to drive past on our way home. As John was buckled into their car, they gave me strict orders to go back to bed and try to catch a few early morning hours before they were gone for good. Danny wanted to keep the party going for some reason, and opted to stay with John as well.
I often think about that image of them standing in front of their car, waiting patiently for us to see them and let them rescue us. The few hours of sleep I was able to steal that morning felt great, but what felt even better was knowing that we weren’t alone. The rest of New England was not asleep. My in-laws were wide awake, and they were ready to offer support in the form of sympathy and respite. They understood our frustration, because they had walked in our sleep deprived shoes many times before. It’s also worth mentioning that the rest of our family helped out tremendously as well.
The next time you find yourself wanting to curse something awful at 3am because your child won’t sleep, know you’re in the company of friends. Call in support if you can. Sleep is important, obviously. Do everything in your power to try to get it back.
Epilogue
After talking to a psychiatrist, we have started giving John melatonin at dinnertime and an hour before bedtime (2 gummies total). We learned that many children with autism lack the ability to produce melatonin naturally, and they need to start accruing it earlier in the evening. You know how you start to feel tired around the time that dinner is cleaned up and want to cancel all your evening plans? That’s when your child needs to start feeling tired as well. For us, this method has had some success. It’s not a cure all, but it’s definitely something worth discussing with your child’s doctor.
Good luck and good night!
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