This morning was a tough one.
I was up until almost 4:00 AM with my son. In the haze of perseverating chatter about computer builds and salt water tanks, I was struck at around 3:00 AM, at how little my life has changed. It’s been 13 years since my son was a newborn, and yet many nights feel exactly the same.
Sleeping for short stretches, only to be awakened by the needs of a child I love dearly – but just is not equipped to sleep – is a constant in my life.
Mothering a child on the autism spectrum can be so, so tiring. Literally. So tiring.
Studies have suggested that nearly 80% of children with autism have sleep problems. This means that 80% of parents with children on the autism spectrum also have sleep problems. It is a very real, very present reality for many of us.
And, in my experience, one that most doctors and therapists cannot really identify with. “Make sure you cut out any sugar and electronics for at least three hours before bedtime,” was the constant recommendation when my son was younger. It was infuriating. We had been doing that for years, with absolutely no effect.
Sleeping for very short periods of time, only to be wakened again and again is used as torture in some countries. I for one, would like to say I understand why.
Chronic sleep deprivation has serious consequences. Increased risk of injury and disease, increased anxiety and stress, along with the day to day lack of function can be a devastating reality for so many of us.
For my family, the only way we have found any sort of balance in all of this, has been through trial and error.
For me, the most difficult part in all of this, was just simply accepting that this is part of our life. I spent years angry and frustrated that we hadn’t found a solution or cure. I am ashamed to say that I was bitter and resentful. And it helped no one. After reading a few studies about autism and sleep disturbances, I began to understand that I was not alone in all of this. Sleep disturbances are as much a part of this, as my son’s social struggles and sensory sensitivities. Acceptance helped me to stop trying to make it go away, and instead, figure out how to cope with the reality of our sleep situation.
Autism, Sleep Deprivation, and How We Cope
This has been a big one for us. On nights when my son simply does not sleep (I mean at all), we adjust our day to reflect a much slower pace. (Taking him out for field trips or errands on less than three hours of sleep makes us both prone to meltdowns.) We homeschool, and one of the greatest benefits has been the freedom to allow him to sleep in, after he finally falls asleep at 4:00 or 5:00 AM. I plan easy meals, wear yoga pants, and try and baby myself a little too. The truth is, I am sleeping the way a mom of a newborn sleeps. As such, I try to treat myself with the same grace and understanding that I would a mom of a new baby. Easy meals, sleep when you can, don’t expect too much. Although my son rarely sleeps through the entire night, he does get a good stretch every now and again. Those are the days we really focus and get things done. It works and it takes the pressure off of me to try and do all of things, all of the time.
Just over a year ago, when my son was 12, his developmental pediatrician recommended a sleep aid. I was worried about starting an actual prescription for sleeping pills, so we agreed to first try natural supplements. We have found that a small does of melatonin before bed, makes a huge difference. He now sleeps more consistently and for longer stretches of time. It hasn’t completely solved our sleep problems (I was, after all, up until 4:00 AM this morning), but it has made them much less constant.
This may be something you want to try as well, but I have to caution you – please only use supplements in partnership with your doctor. There are side effects and risks just like anything else. I also want to say that we may, at some point, try the prescription medication. We take it day by day, and I would encourage you to do the same. (No judgement here!)
If you can find any time to get away and sleep, DO IT. My husband has been great about allowing me to get away over night, from time to time. I have actually driven to my friend’s house and stayed in her guest bedroom in an effort to catch up a bit. Every once in a while, my husband and I also get some time away from our boys – and when we do, we have learned to not feel guilty about napping, watching Netflix and zoning out. We need to recoup. We need to rest. We need to check out a bit. And when we do, we return to our daily life much more equipped and capable.
If getting away is just not possible (we can’t sometimes because of finances or lack of overnight care), my husband and I take turns. He will stay up until 1:00 AM with my son, and then I will take over after grabbing a few hours of sleep. He will try and get me a nap on the weekends, and then I will do the same for him. We do the best we can to sneak in a little respite for each other.
Finally, if you are like me, sleep deprived and feeling a little desperate, please allow me to encourage you.
This is a real thing. It is part of having a child on the spectrum. Your child is not alone. You are not alone. And finding ways to cope will make life without sleep so much more bearable and enjoyable.
With that, let’s go take a little nap, shall we?
Shawna Wingert is wife to a fun loving, makes her laugh all the time, stole her heart away husband. She is also momma to two uniquely challenged, wildly joyful little boys. She writes candidly about motherhood, special needs, and the beauty of everyday messes at www.nottheformerthings.com.
Follow along with the entire Coping Skills for Families Living with Autism series! Simply click on the image above to find all the posts.