I learned early on that life with my little boy was like a Jenga Quake game. Every day could collapse at any second due to reasons beyond your control, but mostly you could safeguard it by building on a solid foundation. That foundation consists of four blocks:
- His sleep
- My sleep
- His food/tummy issues
- My food/tummy issues
Note that what happens to me is just as important as what happens to him – parents do try to ignore their own wellbeing but it’s an amazing fact that if you’re exhausted and your blood sugar is low, you will not be a particularly good therapist. More like a walking zombie.
The sleep aspect is sometimes a challenging one for parents of children on the spectrum. I have heard some horror stories – one boy who was up for SEVEN hours every night, and his poor parents took it in turns to stay up with him. Another whose mother had to lie across his door (like a golden retriever I guess) because otherwise he would get scared and leave his room every night.
Sensory issues, allergies, all sorts of things can cause a child with autism to be up more than others and unlike other children, they might not grow out of it.
My son was, possibly, one of the WORST SLEEPERS OF ALL TIME. I mean that. He would wake up every five minutes at one point (I kept a sleep log but gave up, too much writing) and it left him snappy and irritated. I came out of it looking permanently like a bedraggled owl and my internal dialogue went something like this: ‘Life sucks. It’s all awful. I don’t like it. I hate everyone. Nothing will ever improve. Gee that makes me angry’.
In order to regain our sanity at least slightly, my husband and I embarked on a sleep program for the next few months and now, a bit under a year later, my son sleeps the whole night about 4 nights out of 7. The other three nights he will be up for two-three hours and fall back asleep himself. It’s not perfect, but since I compare to what used to be, I am over the moon. So this is what we did:
Step 1: Fix/Eliminate All Medical Reasons for Bad Sleep
First, I must mention that sleep apnea is a common reason for bad sleep among kids with autism. It was not an issue for us because I noticed that Michael never snored or breathed loudly, but this is something everyone else should check out. A visit to the paediatrician might generally be useful as it might bring up other medical sleep issues that may make a huge difference.
One of Michael’s biggest issues and reasons for waking up in the middle of the night was his dust allergy. Nearly every night, and during most naps, he would wake up crying with a blocked nose. This one was a pretty easy fix – I made sure we didn’t have curtains in the room, just blinds. I also removed his bumper and started changing his sheets every day. Blocked nose was now a thing of the past, and so was any ‘down time’ for my washing machine. Anything for a good night’s sleep!
Step 2: Melatonin and Bedtime Routine
For a year and a half we would spend hours and hours every day getting Michael to sleep. I calculated that when he was 18 months old, I would often spend six hours out of every twenty-four getting him to sleep. Patting, rocking, whatever. It would often take my husband and I about 1.5 -2 hours to pat him to sleep at night. We would do it in shifts, and I think my husband actually enjoyed this because he’d get to quietly watch the cricket on his phone without me making him talk to me or any other unpleasant interruptions.
We had a bedtime routine involving bath, brushing the teeth, changing into pyjamas, and then an attempt at quiet time. Michael always had different ideas though and would start running around screaming wildly during ‘quiet time’. He would then continue to do this in his cot. Sleep training wasn’t an option for us because Michael preferred it when we left the room – he wouldn’t lie down, he would just run up and down his cot making loud Tarzan like noises.
The only way to calm him down was to stay in the room with him and take any opportunity when he slowed down to ‘gently encourage’ him to lie down, and pat him until he started breathing slower and actually put his head down on the bed.
Melatonin changed all of that practically over night. It was a life saver. If I were a Roman emperor I would build a temple to Melatonin. I already pray to it every night.
I would give him about 2mg per night (a compound chemist made it up for us with syrup so it was 1mL of syrup out of a syringe). Half an hour later Michael would start yawning, stretching and laying his head down on the couch. Then we would put him into his wearable blanket, put him to bed, and leave. That is it. That is all we do. It changed our lives more than the washing machine and the car. It was amazing.
Another great thing was that, even if he woke up for a few hours at night, the melatonin would still be working (it’s slow release) and he would stay in bed, sleepy. Eventually he would just nod off again. Sometimes after half an hour or an hour. All by himself. Amazing.
Step 3: Cater to Sensitivities
Like many kids on the spectrum, Michael would wake up at night because of the tiniest sound, the tiniest change in temperature or humidity level. Anything. My husband and I have learned to survive by making sure everything in the room is perfect so that he has no excuse to wake up.
We put dark cardboard on the windows so that it remains dark in the morning.
We put white noise on so that he can’t hear sudden sounds. It gives a constant background of sound and you can change it to something soothing like ocean noises. We actually use it ourselves as well, it is a really nice way to sleep once you get used to it.
We monitor the temperature and humidity levels via a baby monitor. The heater/air conditioner in his room is very sensitive and keeps it at a more or less constant temperature. We also have a humidifier that we use very often – we find that as long as levels are between 45-55% he sleeps quite well.
Step 4: Make Sleep as Comfortable as Possible
Another thing that really helps with Michael is a wearable blanket, due to his total refusal to wear even the lightest one himself. This will have to be faded in a couple of years once he’s toilet trained but for now, it keeps him warm and comfortable and that is all I care about.
We also have, after much heartache, found pyjamas for him that were spun by a blind Tibetan monk out of the wool of a sheep that was fed only silk. Or something like that. They are thin, but warm, and cost like $90. For real. I don’t even care because they don’t press on his (rather capacious) tummy and make him comfortable. It is amazing what I will do for a good night’s sleep
Step 5: Do NOT Rock, Pat or Pick Up the Baby Unless Absolutely Necessary
Some of Michael’s sleep issues were, I must admit, caused entirely by myself. When he was at his worst, at around 17 months old, I rocked him to sleep every time he woke up. He got so addicted to it that he couldn’t stay asleep unless I kept rocking him, which was of course impossible. So one day I just stopped doing it, even though letting him cry for twenty minutes was very hard. I stood right over him, patted him, did everything except rock him, and that was fixed. By the third day he was completely fine and didn’t cry anymore. I tried to leave the room completely but he would get so upset he would start vomiting within 20 minutes so I couldn’t keep going with that. I would first not rock him but pat him. Then I would pat him for a bit and stop, then pat and stop, pat and stop. Then gradually faded the patting until I just sat there next to him. And eventually I would just leave straight away. This gentler method took longer to teach him to fall asleep by himself, probably a few months until he was totally asleep without me being in the room or any patting, but I felt much better about it.
What really changed our lives was when we allowed ourselves to relax. If Michael woke up at night, which he still does very often, I would go in quickly to check that he hadn’t wet through anything and that he was comfortable and then leave straight away. This means he gets bored of lying in there by himself and falls back asleep.
If I go in to pat him to sleep because he’s crying, I find he wakes up an hour or two later and realizes I’m gone – cue more crying. So I steel myself and wait for a couple of minutes before going in. It’s unusual for him to cry longer so usually there’s another problem and I will need to solve that.
I only change his nappy at night if he has been up for more than an hour and a half, because that would mean he might wet through if he then sleeps in to make up the sleep time.
If all of these steps are in place and I carefully follow them, most nights Michael will sleep all by himself. This means a good mood, it means he can learn, and it means I can function.