Let’s talk about sleep. Or should I say, lack of sleep?

Before having kids I never thought of sleep as a precious commodity. I do now, as I’m sure most parents do. Work, dinner, busy kids, homework, chores – the days sometimes feel never-ending, right?


The difference between me and multitudes of other sleepless parents?


Autism, 17 years of autism. Thousands of nights of interrupted sleep. Never knowing what triggers his brain to wake him up at any given moment. Is it the time change? Is he sick? Is it the rain? Is it too hot? Too cold?




Regardless of the “why”, each morning (or night) I am awoken by the thud of his size 10 feet hitting the floor and his shuffling, stumbling gate down the hallway, in search of his iPad. I open my eyes, blinking through the blurriness, to find my phone and figure out the time. Is it time to actually wake up? Or do I need to try and put him back to bed? My usual cut-off is 5am. Earlier than that and I try to put him back to bed, without awakening the rest of the family. If he makes it to 5am, I take him to the bathroom, give him his iPad, and turn on a video.


Then I stumble back to bed and pick up my phone to keep myself awake. No sense in going back to sleep, at 5:30am I need to get moving and get him ready for school. I need to clean him up, dress him (after checking the weather to see what he should wear), monitor him while he eats breakfast (he is a choking hazard), give him his medicine (he has epilepsy), pack his lunch and backpack, check teacher’s notes, and put on his shoes and coat – ready for the bus at 6:15am.


It’s a finely tuned routine, established through many years of trial and error. The wake up call varies anywhere from 3am – 5:30am. No breaks on the weekend, holidays, or vacations. Sometimes he wakes quietly, sometimes he wakes with exorbitant amounts of energy and vocalizations – waking the entire house.


I am the one to tend to his needs.

I am the one who “must be a saint”.

I am the one struggling to keep my  eyes open at 2pm every day.


According to the National Institutes for Health our sleep needs vary by age:

Newborns 16–18 hours a day
Preschool-aged children 11–12 hours a day
School-aged children At least 10 hours a day
Teens 9–10 hours a day
Adults (including the elderly) 7–8 hours a day

At 17 years-old, Zachary should be getting 9-10 hours per night. He sleeps between 5 and 7 hours per night. At my adult age (ha, see what I did there?), I should be getting 7-8 hours per night. By the time I get in bed and fall asleep I usually end up with 5-6 hours per night.


At some point the lack of sleep ends up catching up to him. He will sleep until 6 or even 7am. At which point my mind begins to run through the worst case scenario – he had a seizure during his sleep and he’s dead. On these days I am terrified to go into his bedroom. I wave off the bus and let him sleep, while I nervously wait for him to wake up.


When he starts to move around, I breathe a deep sigh of relief. He’s not dead. He’s alive. Then I wonder, “Is he sick?”


These are the ruminations of an exhausted mom – minus the tears. Sometimes, there are tears.


Lack of sleep can cause serious harm to your health. This February 2015 Prevention article shows a graphic that demonstrates the effects of lack of sleep on your immune system, heart, weight, and more. I can tell you that I am frequently sick, have gained a significant amount of weight, and struggle to focus on projects or even just getting out of the house some days.


My family can tell you that I’m unpleasant to be around. My husband uses specific words, but I can’t go into it here…lol


Will it end? Will I ever have a meaningful relationship with my pillows again? Yes, the 3am wake up calls will end. Someday he will move into his own home. He will have staff (dear Lord, let him have the staff he needs) and a life of his own.


In the meantime, he currently utilizes Judson Center’s Children’s Respite Home once per month for a long weekend. This allows me to have a taste of “normalcy”, spend time with my husband and teenage daughter, go out to eat, run some errands. If you haven’t tried it, you must. It has saved my marriage and my family.


On these weekends I try to sleep in. I really do, but my body has become conditioned to be on hyper alert. I think it takes longer than a few days for me to unwind and start to relax. I’m not complaining, okay – maybe sometimes, just stating what I have experienced on this sleepless autism journey.


I know there’s a light, a nightlight, at the end of the tunnel. Hopefully there is one for Zachary, as well. We both could use some sleep.


Are you a parent of a special needs child? Tell me about your journey.



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