2/19/2019 The Mighty
This is a piece from the Mighty, a health topic related website. It strikes a cord not only from our own experiences with Shane but many others who we know who’s kids suffer from a rare disease or developmental issues. Sleep is important for your own mental well being, day to day life as well as your child’s and it is absolutely difficult when any or all of those sleep cycles get interrupted for extended periods of time. A idea that somewhat worked for us when Shane was really bad was taking turns with your partner either every other day or two days and two days off, all depending on your schedules. Personally we have not found a solution for Shane specifically regarding he his sleep either… still trying, experimenting, hoping that one day it all gets better. jb
I am tired. Tired in a way that is different than any tired I have known before. A deep tired. 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.
We learned his lack of sleep was related to his autism spectrum disorder, something I didn’t realize could be associated with autism before this. It’s one of the many things along this journey that I did not see coming.
The autism in our life looks 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,” “nonverbal,” “rigidity,” “savant intelligence.” In my mind, autism looked one specific way. I thought 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.
I’ve learned autism can be ever-changing. It can look different from one moment to the next. It is complex. It is intricate. It is so many things entwined together inside of my beautiful little boy. And just when I think I have it figured out, it can become something different.
That is what happened with sleep. Our son began sleeping through night consistently at 8 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 there will be sleepless nights. When our children are sick, we often anticipate there may be some spotty sleeping going on. When we stay out way later than 30-somethings with two young kids should stay out. Because the later the parents go to bed, the earlier the children wake up.
These sleepless moments are an inevitable part of the parenting journey. You expect them. You are prepared for them. When our 4-year-old son stopped sleeping as a part of his autism spectrum disorder, we did not see it coming. We were not prepared.
RESOURCES FROM NATIONAL AUTISM ASSOCIATION
So for the past six 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 10 or 12 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 we finally help him back to sleep, it is time for the parents to wake up and start the day.
We have tried 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 10 nights in a row! We were convinced we found the right method. We were ready to happy dance the sleep deposit all the way to the bank. It was awesome. Until it stopped.
Some days I am so tired I could just cry. 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 can be the best version of him or herself when 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 can make everything feel heavier. Magnified. But we just keep pouring the coffee and fighting forward. One sleepless day at a time.