The Truth About Sleep and Austism

I am tired. Tired in a way that is different than any tired I have known before. A deep tired. A tired that feels defeating sometimes. A tired that is beginning to feel permanent.
Six months ago my 4 year old son slept through the night. And then one night he just stopped.
He stopped sleeping because of his Autism Spectrum Disorder. A symptom that I did not even know was a symptom of autism until it happened to us. One of the many things along this journey that I did not see coming.
But, that is what this journey along the spectrum is all about. Time and time again we are caught off guard. Left with no other choice than to fight through the obstacles.
The autism in my life looks very different than the autism I learned about in textbooks. I had a pretty clear vision of autism in my head. It was filled with all of the buzz words: fidgeting, non-verbal, rigidity, aggression, savant intelligence. In my mind autism looked one specific way. I thought that I would see autism and recognize it instantly.
I never imagined I would live with my son for two years without recognizing his autism. But, I did. Because Autism is anything but textbook.
Autism is ever-changing. It looks different from one moment to the next. It is so complex. Too complex. It is intricate. It is so many things entwined together inside of my beautiful little boy. It is a puzzle, and I am forever working to solve it. And, just when I think I have it figured out, it becomes something different.
That is what happened with sleep. Our son began sleeping through night consistently at eight weeks old. And then all of the sudden six months ago, he just stopped.
As a parent there are times when you expect not to sleep. After bringing home a newborn baby you know that there will be sleepless nights. When our children are sick we anticipate that there may be some spotty sleeping going on. When we stay out WAY later than thirty-somethings with two young kids should stay out. Because the later the parents go to bed, the earlier the children wake up.
All of these sleepless moments are an inevitable part of the parenting journey. You expect them. You are prepared for them. When our four year old son stopped sleeping because of his Autism Spectrum Diagnosis, we did not see it coming. We were not prepared.
So for the past 6 months we have been fighting through the sleepless nights and the exhausted days. We exist in a tired haze.
Our son sleeps through the night about once every three to four days. That night of sleep is bliss. He sleeps a full ten or twelve hours. We wake up in the morning ready to take on whatever the world throws our way. The nights in between are not so victorious. We typically spend three to four hours awake coaxing our son back to sleep. And, by the time finally help him back to sleep, it is time for the parents to wake up and start the day.
Being tired has become a lifestyle.
We have tried so many things to help counteract our son’s sleep challenges. Some remedies work right away and then taper off. Some remedies never work. Sometimes we are not sure if a particular thing is working or not.
We have tried essential oils (in any and every combination possible), melatonin, reduced screen time, removing sugar, aroma therapy, calming music, white noise, blackout curtains, weighted blankets, compression clothing, etc. You name it, we have tried it.
The best stretch of sleep over the past six months came just after we introduced essential oils in a diffuser. We slept through the night for TEN NIGHTS IN A ROW! We were convinced that we found the remedy. We were ready to happy dance the sleep deposit all the way to the bank. It was awesome. Until it stopped.
The only thing worse than not sleeping through the night, is not sleeping through the night after ten nights in a row of sleeping through the night. It was just long enough to forget about the sleepless life style.
Some days I am so tired that I could just cry. Actually, some days I am so tired that I do cry. I ask myself how I can keep going without sleep. I put all of my faith in the belief that this is a phase that will end. Because it will end. It has to end.
But our own exhaustion is not even the worst part. The hardest part is watching our little man struggle through his tired haze. It is seeing his behaviors at home and at school increase as a result of his limited sleep. It is watching the emotional roller coaster that follows his sleepless nights.
So we stock up extra on bold coffee and patience. Coffee for us and patience for each other. Because we are all tired. And nobody is the best version of themself when they are tired.
We take our sleep when we can get it. We keep trying new things. We keep fighting through the exhaustion.
We are tired. The tiredness makes everything feel heavier. Magnified. But we just keep pouring the coffee and fighting forward. One sleepless day at a time.
JS

11 thoughts on “The Truth About Sleep and Austism

  1. Peggy Johnson says:

    J- my sister has been fighting the tired battle for about a year and a half. My nephew will be 3 in July and was just diagnosed about a year ago. She started melatonin and it has helped a little. I look at her some days and just don’t know how she does it. Then I look at my nephew and totally understand. Hang in there and keep taking one day at a time 🙂

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    • piecesofloveblog says:

      We are currently using a combination of melatonin, essential oils, and reduced screen time. We are learning that things that happen in course of our day have a huge impact on how the nights go. One day at a time….and SO MUCH COFFEE!

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  2. Alissyn says:

    Dear Jessica. Thank you for sharing your story. I found your blog through a contribution on huffington parents called follow the leader. My son was recently diagnosed with ASD, and I try to read just enough, and be strong enough and be mom enough to get us all through our day to day lives. It’s nice to see it’s ok to not have it all together and read how similar your story is to mine, that I am going to be tired sometimes, that I am going to cry sometimes, that I am going to be super mom sometimes, but it’s ok if I don’t always quite get there. Just thank you

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    • piecesofloveblog says:

      So perfectly stated! We get to be a little bit of all of those things; it is part of the survival. The biggest gift I gave myself was the permission to get it completely wrong some times. One day at a time…

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  3. thoroughlymodernmombie says:

    Beautifully written and really encapsulates the experience. It’s just me, my son and daughter and it’s difficult coping with no sleep when you’re the only one to sit beside his bed and sing the same lullaby over and over. I joke that as long as I get 4 hours (not necessarily consecutive) I can function, but it’s hard seeing the effects on my son. The progress that he’s been making takes a step backwards. His energy levels don’t wane so people seem surprised when I explain he’s only had 5 hours sleep, but his concentration decreases and his frustration increases. It breaks my heart a little when sleep eludes him, as he needs it to help him be his own little self.

    But as hard as it is to be so constantly shattered, as I cuddle my little boy at 3.30am I know I wouldn’t be anywhere else.

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  4. tomandjerry96 says:

    We finally resorted to a combination for my youngest. She needs large doses or more of things to sleep. We use essential oils, melatonin and a prescription sleep medication. We get about 5 nights of 5 to 6 hours a night and at least one a week a good 10 to 12 when she sleeps hard doing catch up.

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    • piecesofloveblog says:

      We found that we needed a larger dose and we also needed the extended release melatonin. It still amazes me that he can fight through the melatonin and stay awake some times. Meanwhile momma over here with no melatonin could fall asleep standing up!

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  5. Stacy says:

    I am all to familiar with the lack of sleep and starting my day at 4 in the morning! Giving our son a small dose of benadryl an hour before bedtime helps him fall asleep at the same time every night. When he has spells of waking up during the night we put him in front of a SAD light in the morning (around the time we would like him to wake, for about 45 min) and it has greatly improved his sleep. We went from waking up for hours at a time most nights to having a bad night once every few months.

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  6. Julie Macias says:

    Jessica I know those nights are long we try everything for my 16 year old son,some times I question my self how this boy can be up more than 24 hours straight. People said sleep when he is at sleep,I can’t I have a daughter that needs me ,I have to due all my shores.

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  7. Christine Herzog says:

    Thank you for writing this….Sometimes it just helps reading about someone who is going thru something very similar….You see my son too has Autism and does not sleep thru the night. Usually he has what I call 2 sleeps…Sometimes it’s 4hrs and we are up for 4 and back to sleep for 4 more, or sometimes it’s 6hrs, up for 5 and back for 3 more. I too have tried so many things and nothing is full proof. It may seem to work today but tomorrow it’s different. From one exhausted mom to another…thanks for sharing.

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