Gradually Overcoming the ASD/Sleep Dilemma

Sleep is a problem in almost all ASD families.

This week, Michael has had some unusual sleeping times. Yesterday, he woke up for at night for two hours, and therefore got up at 8am. He then fell asleep on his way back from the park at 3pm and refused to wake up until 5pm. Eventually we got him to sleep at night at 11. I crashed straight after that and my husband was already asleep. He then woke up at 5:30am. For anyone following at home that 6.5 hours of sleep. Not enough for a fully grown adult (not for this fully grown adult anyway). I went in, checked to see that he was ok, offered him a drink of water, and left the room. He fell back asleep around 6 and eventually got up at 10am.

Today he did something similar. Michael fell asleep at 7:30pm last night (as you see, routines aren’t a real thing in this house, because we literally never know what time he will wake up or how long he will be up for). He then got up at 3:30am, stayed up until 6:30am, and fell back asleep to get up again at 9:30am. He got his 11 hours, just in a different way to other people.

My husband and I have had to resort to desperate measures to get our full allocation of sleep with patterns like that. He sleeps in a separate room with white noise on, so that when Michael wakes up it doesn’t disturb him. Then once Michael has been up for an hour and a half (if he is), we swap. My husband stays up and listens out for Michael while I put the white noise on and fall back asleep. It is not ideal. But it works for us. And it means that both of us get the amount of sleep we need.

Although this sleeping pattern may seem awful to normal people, it is actually the best we’ve had it for the last three years. This is the best that Michael has slept since he was born.

He sleeps all night about 50% of the time, and wakes up for two or three hours from about 1am to 4am the other 50% of the time. But he is drowsy at night, he falls asleep by himself, and spends a lot of his awake time calmly lying in his cot. A lot of the time I can’t believe how GOOD we have it these days.

An Autistic Newborn = No Sleep Ever For Anyone

As a newborn, it used to take us hours to get him back to sleep. He would wake up for a feed (one hour), and he almost never fell asleep on the breast. Even if he did 99% of the time he would wake up while I was putting him back into his bassinet. And then it would take my husband and I two hours of carrying him before he fell back asleep. Only to wake up an hour and a half later, ready for another feed.

He didn’t nap well during the day either. The bassinet wasn’t often used. He woke up five minutes after you put him down. The only place we could really put him to sleep that wasn’t in our arms, was in a baby rocker. But it is very unsafe to leave babies unsupervised in those things, so that was a temporary solution.

This was all barely sustainable even during the time my husband had paternity leave. The first few weeks we would take turns at night and then hand Michael over to grandparents during the day.

How Co-Sleeping and Breastfeeding Saved My Life

But then he went back to work. At night I would breastfeed, then carry a screaming baby around for an hour trying to get him back to sleep, which failed. Then I would feed him again, hoping that would help. It did not. By then I would have been up for three hours straight and still had an awake, screaming child. And even if I gave him to my husband and he put him to sleep (usually after another hour of carrying) I would have to be up two hours later for another feed. I would average three hours of very broken sleep a night. Some people might be able to function on that. I could not.

Did I mention he also totally refused to take any kind of dummy, from anyone? We really tried. Used every trick. Nothing worked.

Luckily we had a spare bedroom, and a spare bed. So I decided to try co-sleeping. Sure, it meant sleeping on a fairly hard mattress, with no pillows or blankets. I would take a small pillow and just put it under my head. No danger of any loose items harming baby. But at least I slept!

It was a miracle worker for us. I was never REALLY tired, because I could sleep every time I breastfed if I wanted to, and I did that for eight hours a day.

I still spent many hours rocking Michael to sleep of course. He didn’t always fall asleep after eating. It usually took me two hours of rocking to get him to sleep at night, and towards early morning he would also find it hard. But the breastfeeding meant I had to only spend six hours a day getting the baby to sleep, not twenty-four.

My Secret Weapon is Gone…

Then Michael decided, at the age of 15 months, that he didn’t want to breastfeed any more. Co sleeping by itself did not work, but rather seemed to disturb him. I no longer had my secret weapon. So the battle began again.

In the absence of a dummy, comfort blanket, or any toys (he never wanted any of these) I only had rocking or patting as a way to get him to sleep. And of course I had plenty of useless advice from people such as ‘if he’s tired he will sleep’ (no if he’s tired he will whinge). My dad told me he just had to let my little sister cry for forty minutes once, and she was fine. We let Michael cry for two hours several times, and it didn’t come close to solving anything.

I did so much rocking and patting that my hands became especially fit and strong. And my husband did a lot as well. Especially in the period BM (before melatonin) we would take our completely hyperactive toddler, put him in the cot, and practically have to hold him there for two hours just so he would calm down enough to have any kind of shot at falling asleep.

Sleep Training

Sleep training was useless. If we put him in the cot and left, he would very happily run backwards and forwards in there like one of those crazed hamsters in the little wheels. For hours. So we would stay with him, sing lullabies, pat him, put him down fifty times if he let us, and eventually he would just crash and fall asleep. We took turns. He was up, often, fifteen minutes later. All night long. At the low point I started keeping a sleep diary and realised he was up every two minutes.

Eventually we did sleep train him, a little bit. Michael’s biggest problem was that he was addicted to rocking. To this day he gets addicted to things very easily. He would wake as soon as the rocking stopped and never got any deep sleep.

So we would help him fall asleep using any method except rocking. The first time we did that, he cried for forty minutes while we patted him and made him feel safe. As totally crazy, mad, attachment parents I’m not quite sure how we made it through. Except that we knew there was actually no other choice. He fell asleep eventually, and slept for two hours. It was like heaven to us. We kept going with the non-rocking and he kept sleeping for two or three hours at a time. In a few days he stopped crying and accepted the situation.

Other Tricks

Sleep-training alone however was not a solution. Before melatonin, as I mentioned, we could leave him alone in his room for hours and he wouldn’t be able to fall asleep, or re-settle himself if he woke at night.

Part of the problem was teething, but that ended soon. Other tricks we used are similar to those recommended in this website which you can also find in my Resources page. Another good source of information on sleep issues and what you can do about them can be found here.

Part of it was noise, so we introduced a white noise machine (our other life saver). Michael also woke up every morning with a blocked nose due to allergies, so on the advice of our paediatrician we started giving him Nasonex every night. We put him in special merino wool pyjamas that were extra soft and extra light. No blanket (he hates blankets), no pillow (he plays with pillows) and black cardboard on the windows to make sure no light comes through in the mornings. We always knew what exact temperature his room needed to be for optimal sleep and we went to RIDICULOUS lengths to keep it at that temperature.

Tummy Issues

Another major issue for Michael, that affected not only his sleep but his mood throughout the day, was his tummy. I don’t know anyone else that watched their children’s bowel movements quite as carefully as we did. Although not quite bad enough to medicate, Michael has always had a tendency for constipation. And it is only by carefully watching his diet, and adding large amounts of dried fruit, that we have been able to control it.

We have been so desperate we’ve even been feeding him special prune porridge every morning. Luckily the poor kid doesn’t know any better and actually eats it. But the main thing is that it did work, it did fix his problems, and his tummy is not sore anymore. It is amazing how a bit of dried fruit can change someone’s entire day.

Melatonin is our new secret weapon

We have tried many tricks with Michael. But the most important by far was melatonin. It has been nothing short of a miracle for us. It means that he is actually sleepy at bedtime and has a shot of sleeping through the night. Half an hour after he takes it, he starts yawning. He has been known to fall asleep on the couch while watching cartoons, under its influence.

But the problems aren’t over yet. At the moment our biggest challenge is the fact that Michael is dropping his nap. This means sometimes he sleeps during the day, in which case he goes to bed late and needs less sleep at night. Which works out well for us, since he is more likely to actually stay asleep. And other times he just isn’t tired until evening. So it doesn’t matter how much I try to put him down for his nap, it will not work. In these situations he goes to bed early but is more likely to wake up half way for a few hours, then sleep in until quite late. And not nap again. Repeating the cycle.

It Does Get Better

Thinking back to how it was at the beginning, I know we are lucky now. We can be so much more relaxed about him because we know that even though his sleep is unusual, he is getting deep sleep and he is getting his 11 hours a day. He is mostly a very happy, active little boy, not the sleep deprived whingey baby he was for a long time. And I like to stay positive. Maybe one day, in the near future, he will drop his nap entirely? Maybe no other problems will pop up? There is a small chance that in a couple of years our child will start to fall asleep at roughly the same time, sleep all night, and wake up in the morning…

A girl can dream.

 

 

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3 comments

  1. I have just discovered your blog in the last few weeks. Thank you! We also have photos of our little one apparently sleeping peacefully which belie the truth: 3 and half years of chronic sleep deprivation and all the tricks and adjustments we made just to get to sleep, only to have to reinvent the wheel once our old tricks failed to work. We finally embraced sleep coaching when our son was 19 months (!) which worked to some extent but was not the solution we hoped for, craved or needed. That’s the thing with ASD, usual methods are a bit hit and miss. My memory of the coaching is somewhat coloured by being advised all is fine with our toddler’s communication and the perceived endearing nature of our little one who was compelled to complete a circuit before being able to settle for sleep. My concerns about this ritual was raised in conjunction with him not talking, babbling using repetitive sounds etc.. which failed to raise any red flags (despite sleep issues being a hallmark of ASD in many children). Unfortunately, the reassurances and normalisation of behaviour haven’t stopped, even with the ASD diagnosis. An example: a meeting last week with an early intervention pre-school teacher stating “what’s wrong with rituals and compulsions. I feel the need to do my knitting every night”. There is a theory in psychology called “learned helplessness”- you just give up after repeated failed attempts to do something because it’s near impossible to gain traction. Afterall, all I am doing is communicating our paediatrician and therapists’ recommendations in the hope that his program can accommodate these. We spend so much time, energy and money in developing our son’s program. Having others who are supposed to assist his pre-school education regard expert advice as “optional” is really disheartening.

    Once again, thanks so much for taking the time to write your blog. I look forward to visiting again.

    Reply
    1. Of course Mel and maybe it’s time to change early intervention preschools if you disagree with their explanations? We tried MANY different places for Michael and most of the time the things the ‘experts’ said to me were complete rubbish. They just say them with so much certainty that you think maybe they’re right and you’re just crazy? But you’re paying them good money. Find someone else who understands you and your child better, and whose explanations actually ring true.

      Reply
  2. Hi again. The person who made that comment is not central to the preschool teaching, so I was happy to let it ride and wish her luck with her knitting. We’re doing a lot of therapy being supported by an ABA therapist. The child-care and preschool provide those opportunities that we can’t recreate or simulate at home. At pre-school there are at least four children with special needs and I think overall, they are doing well and the teacher’s aide there is trained in the Early Denver model. The child-care has allowed a shadow in for some of the time and the educator to child ratio is high (6 for 30 children). We finally came to ABA after significant resistance about the approach from the psychologist we saw. This resulted in many months of wasted opportunities, I have no doubt. I love our ABA program and it’s focus on the specific things we are trained to work on and how enabled we feel to be able to engage our son with therapy- I think this is lacking in other sorts of approaches (or at least that’s been my experience). Some days, though, I struggle to maintain my optimism and wonder what this is going to look like in 10 years’ time. The pressure to do as much as possible now in this crucial developmental period is at times overwhelming. But obviously getting sleep will help! Thanks again for your blog. It is really great to see local content and relate to another parent’s experiences.

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