I have tried to steer clear of calling myself an expert in any of my previous posts, as I don’t believe I am. Sleep however, is a totally different ball game and I will take the liberty of stating I am a self declared sleep expert. Or should I say ‘Lack of Sleep Expert’?
Over the years, I have told anyone who has cared to listen (and they probably don’t anymore after being bored with me mentioning it) that I have less sleep than anyone I know. Fact. It is a standing joke with people I know that, “Nobody has less sleep than Tina.” It’s possible that my friends are mocking me.
My sleep problems started on the day Joseph arrived and have continued ever since. There have been peaks and troughs but in the main, it has been a snake like issue that fork-tongues me every once in a while.
Ironically, when Joseph was described as jittery in hospital and fed some formula milk he was sleeping quite a lot. I was told to wake him every 3 hours and feed him, to ensure he was getting enough nutrition. I pointed out that I would be asleep so how would I know to feed him. She laughed and told me to set an alarm or they would come and wake me. That first night, I remember her coming back to me and trying to wake me from my drug fuelled sleep. I wanted to tell her to shit off and punch her in the face but she seemed insistent that I woke up. I am certain I told her to go and feed him some more formula. I just wanted to be left alone and thought he could be someone else’s problem for the duration of my stay in hospital. My maternal instinct was yet to kick in at this point.
Even when we left hospital, I was handed over to the community midwife with the same instructions of waking him every 3 hours and feeding him. I recall getting totally hung up on when this 3 hours should start; from the moment I started feeding him or finished as this made a massive difference given how long it took him to feed. Soon, I didn’t have to wake him to feed him as he was in a pattern of waking up before the 3 hours and was in a routine which I didn’t particularly want.
Within days we were back at hospital as the community midwife still didn’t feel he was feeding enough and his Des O’Connor look (you may have to google this if you are less than 40) wasn’t impressing her. After a couple of visits and more tests, his bilirubin levels were found to be fine and we were sent on our way again.
I spent my nights awake, feeding Joseph downstairs so as not to disturb his dad and watching shit tv that I think will haunt me forever. And in between the shit tv I was sat reading articles around when the baby will sleep through the night. I was exhausted, yet I always felt that when Joseph slept I should be running around catching up with any jobs that needed doing. I’d fall asleep when he was feeding from me and then wake up not knowing whether he’d fed or not. It all seemed to be a bad dream I was living.
As time moved on, his reflux got worse which impacted on his sleep. As soon as you laid Joseph down, you could see him writhing around,which I assumed was his stomach hurting. So we used to walk around with him in an upright position until he was completely asleep and then lay him down. If we were lucky, we’d get a couple of hours before the whole cycle would start again. I’d try feeding him, but he didn’t want milk. He just seemed to need to be lifted up and winded. It was suggested to me that I had a clingy baby who just wanted cuddling, but if that was the case, he would have settled once you picked him up or fed him and that never happened. He was clearly experiencing some sort of discomfort.
I watched other mothers with their quiet settled babies and wondered what I had done to deserve this crying, sick child that I had. Any outings were meticulously planned around feeds and sleep as we couldn’t even attempt to leave the house until feeding and winding had taken place, which then left a gap of about 45 minutes to get something done.
When we did finally get the all clear from the Paediatric Gastroenterologist at 18 months, I decided that we would try some sleep training and controlled crying. It wasn’t to everyone’s liking but I figured by now things couldn’t get any worse and I needed him to settle without having to pace the floor for an hour each evening. He was getting heavier, and physically and mentally it was too demanding.
When I started the sleep training, I had prepared myself for the worse, but it was easier than I thought; possibly as the previous 18 months had been so difficult. I tried to put him in his cot a little sleepy, gave him his dummy (yes hang me now, he had a dummy) and walked away. It seemed a very clinical approach and completely different to what we had experienced. Again, maybe I am supposed to say how it really upset me and I felt detached from my child but I didn’t; I liked it. He cried and I timed it before going back in, telling him it was nighttime, whispering in his ear that I loved him and to go to sleep. This was probably the only textbook moment we have ever had, as within days the crying got less and less and he just quietly went to sleep of his own volition. If I could have high-fived myself, I would have done.
We applied the same approach if he woke in the night and still do, although over time I have probably become less tolerant and under my breath told him to ‘shut the f*** up’ whilst crying at my misfortune (yes indeed it has got me to that point).
So I had taught my child to be able to settle himself off to sleep but after a few nights sleeping through he would be back to waking in the night for no apparent reason. Once he was awake, he wouldn’t go back to sleep straight away and would often be awake for 2 hours before finally going back to sleep. Usually it was nicely timed for me having to be up for work at 5am or as soon as I was in from work at 3am.
I have followed every bit of advice you could imagine; blackout blinds, blackout paper, weighted blankets, expensive duvets, different brands of sleep clocks, monitored food and drink intake before bed, ensured there was no tv or iPad before sleep. I’ve put him to bed later, earlier and woke him in the night to ‘to reset his clock’. As he got older, I wondered whether it was because he needed the toilet and still in nappies. I travelled to Sussex for a therapy that claimed that they would improve his sleep (I’ll come back to that one another time) and I contacted a local sleep charity who agreed that I was doing more than most parents and could only offer limited advice. I had ‘joked’ with doctors about prescribing me something to make him sleep but unfortunately nobody had any magic solution. And then finally, I realised (after his diagnosis) that maybe I had analysed and over analysed and this was simply how it was and we just needed to manage the situation.
They tell me that children with autism don’t need as much sleep as other children and it is common for them to have night waking. I am also told that I am lucky that Joseph goes to sleep so easily still, as some children with autism lack the hormone melatonin. Their parents find themselves with children who not only suffer from night waking and early starts but a child who doesn’t go to bed until late either. I guess we’re back to the lesser of the two evils again and I am thanking my lucky stars it’s not any worse than it is, although it does feel like I have the shit end of the stick most of the time.
I suppose what I have found hard, is working full time and juggling Joseph’s sleep problem too. Shift workers don’t typically have a great sleep pattern but you throw a child with sleep problems into the mix, it’s a recipe for disaster. I recall discussing Joseph’s sleep problems on a night shift and a colleague said “I must be autistic then as I have trouble sleeping too” It wasn’t the response I was looking for and was hurt by the insensitivity of the comment.
I have battled with wanting to be part of a team and work the same rota as everyone else but also needed some sort of balance of hours. I have frequently been referred to as being part of ‘the mums club” by the very fact I didn’t work the same rota as most other people. Over the years I have tried a variety of rotas to try and retain some sanity and acquire sufficient sleep. None were ever ideal but the latest was a combination of 12 hour weekday nights and 12 hour weekend day shifts. My night shifts were Tuesday and Wednesday and after being up early on the preceding days and not getting sufficient sleep off nights, Thursday was never a day I looked forward to. I’d get to bed at around 7am but I’d set the alarm for about 10:30 so I was tired enough to go to sleep that night and that I would be able to get up with Joseph if he woke in the early hours of Friday or was up at his usual 5-6am on the Friday. I’d find myself feeling tearful Thursday evening, overtired and stressed about the whole situation. I hated Thursdays and when it was my weekend to work, I knew I only had a day to turn my sleep pattern back into a day mode before having to be up for a 5am start again. It felt relentless and the only way out was me to look for a job which didn’t involve shift working. It meant a drop in salary and working more hours but I felt the sacrifice would be worth it.
I want that child that has to be woken up in the morning. I want him to be late for school and have to apologise and let them know it is because Joseph has slept for 12 hours and we had the best sleep ever.
On the odd occasion he has slept longer than 10 hours or beyond 06:30 I see a more settled Joseph and that has a positive effect on his school work and his general demeanour. It also makes a difference to me too as I feel better and able to cope more effectively.
I want to be able to end this post with some powerful statement but unfortunately I don’t have a crystal ball. I am hopeful that the day comes when I do have to wake Joseph up. Despite what friends say about one day I’ll have to drag him out of bed; I can assure you I won’t. I will gladly leave him there as I’ll be fast asleep and then nobody will be more rested than me. Fact.