10 Truths I Know About My Son’s Autism and Sleep

The number one question I am most commonly asked is…does your autistic son sleep? And if he does, give us your secrets. The questions pour into my inbox during all hours of the night. I’ll look at the time stamp and see 3 and 4 am. I’ll read the words of desperate parents wondering if they are going to survive the sleep deprivation.

The answer is yes. He sleeps now. But he didn’t for nearly six years. And, most importantly, I understand.

Sleep deprivation or irregular sleep is really hard. And it’s supposed to end after a while. Cooper’s dad and I lived for six years thinking it was never going to end.

Cooper did not sleep through the night until he was five years old. As a newborn he slept 6-8 hours in a 24 hour period and never slept longer than a 45 minute period. The sleep deprivation was torture. Around age five, Cooper finally started sleeping but woke up before 4 am for a year. Honestly, that was harder than the multiple wake ups.

Let’s just say, I’ve tried everything to get my son to sleep. We tried black out curtains, sound machines, night lights, humidifiers, dehumidifiers, music, essential oils, etc. We tried it all. And nothing worked. That is until I figured out that Cooper was waking up from either pain or anxiety. Or both. I turned my energy to fixing his his constipation and ear infections. I modified his diet to reduce inflammation. We reduced his stress and anxiety by giving him a way to communicate. None of it was easy. In fact it felt like an impossible uphill mountain at times. But we did it. And once we did, my kid began to sleep.

I refused to accept the answer…Your son isn’t sleeping because he is autistic. I began looking for answers instead of excuses.

Today, at age seven, my son sleeps from 9:30 pm to 7 am. It was a long road to get here. But we did it.

Now, I firmly believe that sleep issues are directly correlated to pain. I am not a doctor nor am I an expert. I just like to share the little nuggets of wisdom that I have learned. Maybe they won’t help you or your child. But, maybe they will!

Here are the 10 truths I know about my son’s autism and sleep.

1. Cooper didn’t sleep through the night until he was five years old. He would fall asleep fine but wake up every hour or so. I have memories (nightmares) of going from his bed, back to our bed, to the couch, to the floor, to wherever in hopes of getting just a few hours of precious sleep before I had to go to work the next day. Sleep deprivation affected my parenting, my relationships and my job.

2. When he did start sleeping through the night at age five, he began waking up daily at 3:30 am. He did that for close to six months. This was way worse than the multiple wakeups. It took my body a while to recover from being woke up every hour so I would have anxiety about bedtime. I would count down the hours to 3 am. It was not good. And let me tell you about the isolation a person feels when they live a whole day before the rest of the world wakes up.

3. For years Cooper would wake me up in all variety of fashions. Each phase would last a month or two. One phase involved him dropping his wet diaper on my face. No joke. Right, directly, on my face. Another phase involved him putting a diaper wipe on my cheek. That was my least favorite. I also remember quite a few mornings where he turned the lights on. He also went through a phase where he grated his toenails up and down my leg repeatedly. This was a sensory seeking behavior at its worst. None of it was pleasant. It was jarring.

4. Like I mentioned above, the sleep products didn’t work for us. I tried everything from black out curtains to music to humidifiers to fans to sound machines to essential oils. I tried natural, holistic chiropractors. I tried melatonin gummies. Nothing worked. And with each product I would get more frustrated. Friends and family were always trying to help and towards the end I just gave up trying. There was no rhyme or reason to his sleep schedule. One trick I do recommend if your child strips beds is the Snuggle Sheet. It changed our lives.

5. Keeping him up later did nothing. Removing naps did nothing. No matter what he did he woke up at 3:30 am. So, eventually, we started putting him to bed as early as possible because we knew he needed the rest. Many times Cooper would have his first wake up before I even went to be at 9 pm. That was hard. And it wasn’t like he woke up crying. He woke up ready for the day. That is so much worse.

6. At age five, when he finally started sleeping longer than a three hour period, I would panic and think he was dead. I would wake up panicked and drenched in sweat in the middle of the night because he hadn’t woke me up a dozen times. It was traumatic.

7. My son has no concept of day or night. No concept of light or dark. For example, last night Sawyer threw up at 3 am. He was quite noisy and little Cooper came walking out of his room, carrying his blanket and treasures, and asking for his Kindle. He thought it was morning. He was fully ready for the day. For years, and even still to this day, I wonder how Cooper can wake up at 5 am. The house is pitch black, the curtains are pulled and he’s wide awake. He has no concept of time, clocks, or any other gadgets. Trust me, we’ve tried. I’ve tried the clocks with the sun and moon. I’ve tried the timers. None of it works.

8. I firmly believe pain was waking him up. Cooper had chronic ear infections and constipation issues. Now that he is healthy, I can’t even imagine how crummy he must have felt for years. Once we healed the pain he started sleeping. And for long periods of time. Like I mentioned above, Cooper now sleeps 9pm to 7 am. That’s a lot of hours!

9. This one is really fascinating to me. Cooper is either awake or he is sleeping. He is either hyper and moving or he is sleeping. There is no in between. Meaning, he doesn’t lay and doze in bed. If he gets woken up, irregardless of the time, he is awake for the day. I have video of him at 3 am running circles around my bed and laughing with joy. It was alarming. But, that was my kid. And we made it through.

10. I have PTSD when it comes to sleep. Cooper has been sleeping through the night since we made his diet changes, removed gluten and dairy, and added in supplements. It’s the best thing we ever did. Now, in saying all that, this mama never fully recovered from not sleeping through the night for six years. It’s taken it’s toll on me. I’m working on it. Trust me. And when I hear stories of other parents struggling with sleep, my mind immediately goes back to those long, long, long nights and early morning wake ups.

Don’t give up parents. You’ll make it through. And remember, take turns sleeping. Ask your spouse, mom, friend, PCA to take a shift. (And don’t feel guilty asking!) There were many a nights where I would ‘try’ and sleep in a different room. I say try because Cooper would always find me. But in theory, it was an excellent idea!

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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  • Frances

    February 6, 2018 at 8:24 am
    Reply

    This is a terrific essay. I appreciate your honesty about the trauma and anxiety that we caregivers experience as a result of sleep deprivation, […] Read MoreThis is a terrific essay. I appreciate your honesty about the trauma and anxiety that we caregivers experience as a result of sleep deprivation, having gone through that myself. My two boys have sleep issues related to anxiety, pain (leg cramps & joint pain) and reflux, but our nights are mostly peaceful now. In addition to treating the medical & nutritional symptoms, I found that moving bedtime earlier (because they wake up at the crack of dawn no matter what) and developing a meaningful bedtime routine for each of them did help with the quality and quantity of sleep. One needs exercise before an evening bath to calm down his system, the other needs extended periods of closeness to each parent before he can sleep. Each person is different, and a good night's sleep is indeed possible. It's difficult to explain to others why we don't go out at night, but the evening routine is necessary for our health and sanity. Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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