Sleep doesn’t need to be an impossible dream
I consider myself an expert in sleep deprivation. Many parents will feel similarly qualified. In fact, can anyone call themselves a parent if they haven’t watched Mr Tumble on loop for 5 hours straight?
In the past eight years it feels like I’ve tried everything to help my autistic son sleep. I wish I could tell you I’ve found the answer. The reality is I’m writing this on two-hours sleep after Llew finally dozed off at 4 a.m. this morning. I’m on my third coffee and have binge watched the entire second season of Schitt’s Creek.
Feeling helpless
“Not being able to figure out how to help your child sleep can make you feel utterly useless and inadequate. “It’s not supposed to be this hard” is a sentence that has often plagued my thoughts in the middle of the night. But the basic sleep equation is: the less sleep you get, the tougher it is to figure out a solution. There have been so many times I’ve sworn under my breath at the revving of next door’s car engine, as they head off to start their early morning shift (no doubt having slept like the proverbial log for 8 hours straight).
It does not matter whether Llew has slept for a whopping 5 hours or been awake through the night, the next morning he will, without fail, be bright as a button, as joyful as a lark. I do not share the same enthusiasm. But when that adorable gorgeous face stares into my blood shot, puffy, sorry excuse for eyes, all is forgiven.
It’s counterintuitive but often Llew has a good day after next to no sleep, as though he’s stayed awake to work out an advanced mathematical problem in his complex neurodiverse brain. But the tiredness gradually builds and after several restless nights we’re both struggling. I’m a donkey on the edge (one for the Shrek fans).
Thankfully there’s an abundance of research and advice out there. According to the ‘experts’ sleep doesn’t need to be an impossible dream.
Set up a routine
Apparently you need to work out your child’s sensitivities and anxieties, because if a child with autism doesn’t feel right they won’t sleep.
“One way is focusing on when your child is showing those sleepy signs. You know the ones – the occasional yawn coupled with irritability and crankiness. You use this to set up a routine to prepare them for sleep and to set regular bedtimes and wake times. It has to be predictable and within their control.”
For Llew the routine is complete darkness and total quiet at 8:30pm on the dot. Tightly swaddled in his duvet, next to him a perfectly positioned man size buzz lightyear. There’s no place for dimly light mood lighting or weighted blankets here. It took me months to work that one out.
Medication options
It is a truth universally acknowledged that if you gather a group of sleep-deprived parents of autistic children, it won’t take long before someone raises the subject of melatonin. This supplement has been around for years but many parents are reluctant to try it. Some autistic children have a dysfunctional melatonin system, and there is now evidence that giving these children melatonin helps them go to sleep and stay asleep longer.
I was reluctant at the beginning, the lack of evidence and conflicting advice made me uneasy. Eventually I tried it. Whilst it knocked out Llew with all the effectiveness of an elephant tranquilliser, he would wake a few hours later distressed and exhausted. Nonetheless, it is enormously helpful to some children and their parents.
Help your child feel tired
Setting up regular daily activities can help develop better sleeping patterns. If your child isn’t sleeping, it could be down to just a simple lack of exercise during the day.
Llew loves to run. Usually in the opposite direction when I’m laden with an armful of shopping in the middle aisle of the supermarket. Once he starts it’s difficult to stop him. So after school we find a safe place so he can canter around to his hearts content. On the weekend it’s more of the same. His favourite place is the beach. Wind, rain or shine, it matters not and he runs until he can run no more. When it works, he climbs into bed and he’s out like a light.
Connect with others
Some days I just want to hear that I’m not alone. I need to hear someone else’s story and know that somewhere in the world another human understands.
“That’s why connecting with support groups, organisations and charities to share experiences is so important.”
There are so many parents of autistic children hoping to crack the sleep code for their child. So far I haven’t found it, that magic routine remains elusive. But I’ll keep trying and until then there’s always coffee and Netflix.