Sleep. Say that word to the parents of an autistic child and it will stir up all sorts of emotions. Children on the spectrum frequently have some sort of sleep issue; they either don’t go to bed till late, wake ridiculously early, wake frequently or barely sleep at all. Some need melatonin to help regulate their sleep. Most parents with children not on the spectrum will have gone through some sort of sleep issue at some point in their child’s life. Some are quite fortunate, and sleep-disturbed nights only lasted through the young baby phase, some a little longer, perhaps.

I haven’t really slept properly since I was pregnant with H, so around nine years now. He was a little bugger whilst still in the womb, causing me to have SPD – Symphysis Pubis Dysfunction – making my pelvis incredibly painful and meaning that I had to ‘sleep’ (I use the term incredibly loosely) sitting up in a camping chair in the bedroom for the last three months of pregnancy. Then, once he was born, I could count on the fingers of one hand how many nights he slept through without disturbing me, or waking ridiculously early, until he was about five and had started school. Of course, by this point we’d had Tink, reasoning that we might as well carry on with the sleepless nights seeing as we were so used to them. It had actually put us off having any more children for a while though.

Tink, however, was quite different. She did the usual baby thing of waking for feeds through the night – no problem. That’s to be expected. Once a bit older, she settled into quite a nice routine of going up to bed at around 7pm after her evening milk, we’d read a story or two (not that she was really bothered about that part, but I was), then she’d go off to sleep on her own. She might wake once or twice in the night, but usually because her dummy had fallen out and she needed it retrieving from under the bed. Annoying, but, as I said, we were used to being woken. Occasionally, if she was really poorly, she’d spend a night or two in with me, but was quite happy to go back to her own bed when better. She’d still wake up quite early – pre 6am, but that wasn’t too bad as we’re early risers anyway – but generally, when asked what kind of night she’d had, I could answer “not bad actually”.

I’m not even sure when this all changed, but it was sometime towards the last quarter of last year. I was absolutely exhausted. My job was causing stress and anxiety, and this means that I don’t sleep well anyway, as I have a million and one things racing around in my head at night. Tink had started going to bed later, and not settling down straight away, but getting back out of bed and standing at the gate on her door, shouting and crying to come back out. It was taking longer and longer for her to settle and I was getting more and more anxious and exhausted. When she woke in the night – often – it was just easier to bring her into my bed. I’d tried going in with her and sitting with her, or lying on a mattress next to her bed, but it would take ages for her to get back off to sleep, by which time I was wide awake. Her coming in with me meant that we would both get back to sleep relatively quickly and not feel so awful come the morning. However, bringing Tink in with me meant there was no room for Daddy.

Dave had been sleeping on the too-small sofa for weeks. It actually started before Tink joining me, as he would come home from work late at night and chill out watching TV, then just doze off and not move. This is why it was easy for me to just bring Tink in and we just sort of fell into a routine. She would still go to bed in her own bed, but would wake up most nights and wander in to me, climb in and doze back off. Then it started getting worse. As I’d take her up to bed, we’d pass our bedroom door and she’d say, “Mummy’s bed?” and it became harder and harder to get her to settle in her own. So I, stupidly, gave in, and started letting her go to sleep in my bed. And then it was easier to leave her there, as if we’d have moved her into her own bed she would have, more often than not, woken in the night anyway. And so Daddy kept sleeping on the sofa. We eventually took down Tink’s cotbed and set up a camp bed in her room for Daddy. And then, she somehow conned us into letting her watch her tablet until she nodded off! It just got worse and worse! Not to mention what it’s doing to Dave and my relationship…

So, the time has come to stop the rot and get some order back. I have just over two weeks off work, Tink has the same holiday from nursery. I’ve buggered it up slightly by booking a short holiday in the last week, but that still gives us some time to try to get her sleeping back in her own room, and without the help of the tablet. Last night was Night One.

New routine: bath, into PJs, straight into her own bed where she has her milk while I read a story or two (she’s still not bothered by these, but I miss reading them!).  No tablet, no ‘Mummy’s bed’. Which she did ask for, several times. I had to sit with her, on the hard floor, for about an hour until she dropped off to sleep. Then do that crazy ninja stealth thing where you creep out of the room without stepping on the creaky floorboard and try to close the creaky door as quietly as you can (I really must dig out the WD40!). And she was fine, she was asleep in her own bed, for the first time in months. And Daddy still fell asleep on the sofa…

And then, at 2am, I hear a “noooo!” and little footsteps heading for the door, and the handle frantically being tried. I raced into her to stop her coming my way and she’d lost her dummy, of course. “Mummy’s bed?” “No, Tink’s bed now,” I replied, steering her back in. I then spent the next hour trying to settle her. She’d pop up every so often, and say “Mummy’s bed?” and then, eventually, she sat up, said, “Good night Mummy,” gave me a kiss and, “see you in the mor-ming.” Rolled over and appeared to go to sleep. I waited a couple of minutes, then shuffled my now numb bottom slightly in preparation to get up. “Mummy’s bed!” *Sigh*

I spent another hour and a half either sitting or lying on the hard, cold floor while she fidgeted and shuffled and said “good night Mummy” every so often. Eventually, I caved. I could take no more. My feet were like blocks of ice, my back and dodgy hip in agony. I got up. “Mummy’s bed! Yay!”

She was asleep within minutes.

Tonight, we try again…

The Sleep Issue
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2 thoughts on “The Sleep Issue

  • March 28, 2016 at 3:46 am

    Here are a few ideas……I’ve been thinking about you since I read this yesterday but had guests for Easter dinner…….dishes are in the dishwasher so here are some suggestions.

    Tell her you expect her to begin sleeping in her OWN BED in HER OWN ROOM in seven days ALONE. When you explain you are going to expect her to sleep in her own bed, tell her if she does, she will get stickers or coloring books or extra tablet time (whatever bribe will have the most power over her….and make no mistake, this is the time to forget any illusions you ever had about not being the kind of parent to bribe your child…autism cancels that vow out….you all need to sleep and your husband needs to be back in your bed) if she is able to stay in her bed for the whole night. She may be young and have autism but I guarantee she understands more than you realize. Don’t get complicated when you tell her and don’t get all *mummy needs you to sleep in your own bed” because Tink’s needs overrule yours so….”you are going to start sleeping in your own bed”….just statements, NO Please, NO I/We need you to, NO You need to be a Big Girl…..just the facts, Ma’am.

    Mark the days on a calendar and check them off as the days go by so she can see them and if you don’t have a paper, actual kitchen calendar, GET ONE because as old fashioned as they are, they are a great way for young kids (with autism or not) to have a physical & visual way of anticipating events. And when she DOES sleep in her bed, put a smiley sticker on the day.:) Announce & show her every morning, “six more sleeps until you are in your bed,” or whatever the number is. No emotion, just statements. And perhaps a little tease of, “when you sleep in your own bed and your own room, you will get the *whatever it is*, won’t that be great”?

    And when that magic day comes for her to sleep in her own bed blah, blah, blah and she comes back to your room, take her by the hand, do NOT make eye contact, and lead her to her room/bed and tell her it’s time for bed and sleep. And then leave her NO MATTER WHAT SHE IS DOING OR HOW LOUD SHE IS SCREAMING. And when she comes back to your room, do it again and again. DO NOT GIVE IN. Be calm. Don’t make eye contact or any conversation, just lead her back to her room/bed. And when she doesn’t sleep through the night in her own room, you can mention casually during the day, she COULD get her heart’s desire if only she would sleep in her bed in her room and you are quite sorry but what can you do? Your husband needs to be on board with this because if one of you give in, you might as well forget it….it won’t be pleasant the first night or two but in the long run….sleep in your own bed with no Tink…..the rewards outweigh the hassle! This will probably take at least a few days, perhaps a week but as soon as she has made progress, she gets her reward and it will be glorious because she will continue making progress.

    You can go along the way you are going until Sleep Start Day BUT set things up for success when that day arrives. You (Tink’s Mum)sleep with something now you will be able to put in her bed (a pillowcase, a pillow you sleep on but can put HER pillowcase on or her blanket)…perhaps she smells your smell and THAT’S what the real thing is….she can sense you are there and keeping her safe. Many kids with autism have a heighten sense of smell (I know it sounds crazy, but try it) and smelling their mother’s scent helps them calm down… works for young babies too.

    Limit liquid intake several hours before bedtime. I know milk SEEMS like a good idea but if she feels the need to wee ( in the US, we say *pee*!), that isn’t helping matters. Perhaps she wakes up, she feels the need to urinate and that’s when she realizes where she is, that’s when the 2 am NNNNOOOOO happens

    The sleep issue is HUGE with kids with autism. We found an over the counter liquid sleep medication (they don’t make it any longer) when The Kiddo was about five and when he had spells like Tink is having, we would give it to him and that would break the cycle. It seems to be a cycle with many kids with autism. They have sleep issues such as The Kiddo did–when he was 4– stayed up for TWO WEEKS STRAIGHT when I was pregnant with The Youngest. We begged our pediatrician for sleeping pills for Kiddo and he only agreed when he remembered I was pregnant and did it for my unborn baby (and told me so), not for me, the JERK! Kiddo slept for 20 hours (I kept checking on him to see if he was breathing!) straight through and was back to normal, with normal sleep cycles after. And we found it was a pattern for him……he would have these cycles….we would realize what was happening after several days….we did something to break the cycle…..and he was back to normal. And when we were less bleary eyed, got a plan together for the next time so we didn’t have to think on two hours of sleep (between us ) and could just put the plan in operation. When you are sleep deprived, it’s hard to have a plan!

    Hope things get better for you soon.

  • March 28, 2016 at 11:14 am

    Thanks so much for your ideas! There are some I will definitely try, such as giving her something of mine to sleep with, and I’ve made a sticker chart. I’m totally down with bribery, but I know it just won’t work with Tink 🙁 She lives in the moment; saying “if you do this, this will happen” just won’t mean anything to her – she doesn’t understand consequences. I know, because I’ve tried. I want to cut our the evening milk, but it’s such a pivotal part of the routine, plus, along with her morning milk, is the only dairy she gets as she won’t eat yoghurts, or much in the way of cheese etc. But I think you could be right about the wee/pee thing, as it seems to be a similar time of night that she’s waking, so we might give it a go. Thanks again – lots to think about! 🙂


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