Many kids on the spectrum have sleep issues and Z is one of these. It would be safe to say we have not had “normal” or even “satisfactory” sleep for 11 years. It is something we have worked on for years. We’ve tried pretty much everything. And yet it still plagues us and might do so for the rest of our lives.
Not too long ago (let’s call this the “Zombie Apocalypse”), we were functioning with only two nights of sleep. Z was up a good 5 nights a week. We held it together and worked really hard on figuring out a solution and now we are at about 1 night a week.
What causes these sleep issues? Who knows… maybe his body doesn’t produce the right chemicals, maybe he has a belly ache (and can’t tell us), maybe he has a headache (and can’t tell us), maybe a nightmare, maybe there is a monster in the closet, maybe it has nothing to do with Autism and is simply insomnia… all we know is that we travel this weary path together. Z cannot be alone and can often put himself in danger so one or both parents are “awake” in some fashion to support him.
Z has issues falling asleep, waking up in the middle of the night, and waking up super early.
I will start with falling asleep.. During the Zombie Apocalypse, Z would literally bounce around the room, getting more reckless as his body got more tired. He would eventually either hurt himself (one time knocked out his two front teeth) or pass out on his toys, sometimes after crying himself out of a meltdown. We would hold him down when he was younger to just stop his body long enough for his mind to slow down. Then we couldn’t do that anymore as he got stronger and so I would literally sit on the floor by his bed for an hour with us just staring at each other. No joke… For someone not good at eye contact, he would just stare at me. If I tried to leave he would start crying. Then his eyes would slowly start dropping (for another excruciating 20 min…). Then his eyes would close but if I tried to leave too soon he would wake back up. I became a ninja trying to leave unnoticed. Then we eventually evolved from that to him having to fall asleep in my bed first. I would wait for this and then move him to his bed (again like a ninja so he wouldn’t notice). From there we moved to him passing out on the couch. He was probably 7 by this point and weighed 60 pounds or so but I still somehow ninja-carried him to his bed so as not to wake him up. Now we give him Melatonin, I have to hang an extra blanket on his window (to make it as dark as possible), add an extra blanket on his bed, allow him to have his iPad and he has to begin with sitting up in bed. At some point he falls over and I fix him and his blankets and take his iPad to be charged. Every… Night….
Melatonin is an all natural substance that basically tells your brain it is time to go to sleep. A lot of world travelers use it when in different time zones and it is supposedly non-habit forming. It has literally been a game changer and has almost given us confidence in Z being able to fall asleep.
Problem is that Melatonin does not keep a kid asleep. So there could be anything that wakes Z up and when he’s up, he’s up… The middle of the night wake-ups are crazy-making. I put him to bed, stay up a couple more hours to get things done and get his little brother to sleep, finally go to bed for an hour or two and then hear giggling, squealing, babbling, singing, pounding on the wall. This could start anytime between midnight and 2am and end around 5am or never at all. Yes, this boy can wake up at 2am, never go to sleep, go to school and therapies and stay up until the next night. What does he do when he wakes up? Acts like it is the middle of the day of course. We don’t use night lights yet this kid can play for hours in the dark. So I am up and down depending on his mood and how mischievous he is. Up and down, up and down… Some nights (especially if there have been a few in a row), I have actually fallen asleep and woken up an hour later and run to his room (or the living room if he made his way there) to make sure he survived on his own. I often imagine myself on the news saying how I simply fell asleep and something horrible happened and the world coming down on me as the worst parent.
Early mornings usually begin around 3am or 4am. Up and ready to go full steam. Now, that may not sound so bad. But his little brother (2 years old) is also up throughout the night so there are many nights I am just barely getting to sleep at that point and am looking forward to a few solid hours before the alarm clock. But Z is ready to start his day. He doesn’t stay in his room for too long before venturing to the living room to wreck havoc, make loud noises, eat junk food, basically whatever he wants. So we all usually end up awake at the crack of dawn…
Now, it’s one thing to try and stay awake during the night and quite another to remain AWAKE the rest of the day after that kind of night. That’s right, I work full time and we are chasing a toddler around all day. Therapies, doctor appointments, car trouble, dentist visits, grocery shopping. None of those things respect an all-nighter. We pretty much somehow, vaguely, fuzzily, make it through the day. Most of the time I don’t say when it has been a rough night and have to fake being alive. Coffee is a requirement and I have been known to exist on 5-6 cups a day.
Now let’s all take it back to college days with barely any sleep and trying to function in a 2 hour class just waiting for a nap afterwards. Z goes to school for 6 hours. I try to always send him because if he’s not on schedule that is a whole other post. His sleep issues have severely impacted his learning and growth. It is a known fact children need sleep for their brains to process what they learned the day before. Without that they start again from square one. Sleep issues are prevalent in Autism yet it’s barely discussed with doctors (mine suggested benadryll, a red LED light, GABA, and the most comical of “just tell him to go back to sleep”). There is no respite during the night, family/friends aren’t around for support, insurance doesn’t provide a “night nurse”. Parents are not given any support during this timeframe.
Sleep deprivation can be catastrophic. It has been used to torture people or “get them to talk”. It breaks you down and removes all of your defenses. It has been linked to mood swings, depression, weight gain, memory loss, increased likelihood of disease, fatal accidents and more. This is a serious problem both for the Autistic individuals who are losing out on growth (both physically and mentally) and for the parents/caregivers. Yet this is not something that is talked about as a “symptom” of Autism. As I said, my insurance would just laugh if I tried to get “services” for this (and I know this because they have).
So please look past the bags under our eyes, our slow thought processes and forgetfulness, and the fact that we may decline getting together or cancel last minute. We will muster up our “we don’t need sleep anyways” attitudes, add some concealer under my eyes (which doesn’t do anything anymore btw…), pretend we are teenagers after a wild night out, and pretty much prepare to drink gallons of coffee. And roll the dice every night, not knowing what it will be like. Because that’s just what you do…
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Tilted Axis 