Facebook reminded me today, on my time hop thingy, that it was 5 years ago that we first tried melatonin.
Little Miss H was 5 years and 8 months old and hadn’t slept through the night.
We had tried everything. As a baby she had allergies and reflux, so she fed regularly and we were up through the night. By regularly I mean almost constantly and she would only settle on being held. She was a very sucky baby and we determined that a lot of it was sucking for comfort/to be soothed (rather than hunger) so we managed to settle her on and off with the use of a dummy, one particular dummy only – with hindsight her particular-ness (is that a word?) about it was a clue to her autism but of course we had no idea at the time.
The minute the dummy fell out she would need it back and if it rolled out of her cot the whole neighbourhood heard about it! She went through a phase as a very young baby of sleeping OK during the night (and still waking early) but that lasted mere weeks if that. I really thought we had cracked it, but it didn’t stay.
She’d fall asleep in a room full of people during the day – we didn’t realise at the time but it was clearly social exhaustion, but she still wouldn’t sleep at night.
As she got older she fought like billy-o at nap times and bedtime.
We had a great bedtime routine from early on and a consistent bed time.
We were doing it ‘right’ according to the books but she still wouldn’t settle or sleep.
So we played detective – we started trying things to see what helped.
We added music, she liked it… so it became part of our routine but it didn’t fix the sleep. We added lavender to her bath, that didn’t work. We added a light…we took it away again! We tried swaddling – she hated it. We tried sleeping bags, we tried sheets, we tried everything we could think of.
We moved her out of her cot incase that was the problem. As she entered the twos and threes things just went from bad to worse.
Bedtime became such a battle.
People said make sure she’s tired…. She was going to the park/play dates/outings, playing with me, being entertained by me, then play group and later nursery and not having a nap, but none of it made a difference. I was a big supporter of ‘sleep promotes sleep’ so I really persevered with the day time nap but I ultimately realised I was losing the battles and the war! It felt like I spent the whole time battling her so we gave up nap time. She became an overtired emotional wreck by the end of the day but it was easier than the bedroom battles. It was an exhausting conundrum for us all.
People said make sure she’s eaten enough and then she’ll sleep through. She did have a very limited diet but she ate decent quantities of those things so I didn’t feel that was the answer but we tried by giving her a banana while we had bedtime stories. No difference other than she now wouldn’t go to bed without having a banana with her book!
We briefly tried ‘controlled crying’ – torture for me and her, we tried a baby gate on her bedroom door, we tried a GroClock (we’ve only just got rid of it actually!) and nothing worked.
Once she was at nursery we were able to get her into bed and she’d sit for hours renacting her nursery day – her teddies were all arranged around her and she was the teacher. Of course I know now that she was processing her day but it kept her up for hours. It was her anxiety, on display from an early age, and when I mentioned it in appointments as part of our ‘evidence’, it was cited as little world imaginative play and therefore she couldn’t be autistic. Little Miss H never played tea parties or used her teddies/dolls in play, she was an upside down jigsaw kind of girl and lego and cars and stuff – this was not her playing, this was her processing and interpreting. Anyway I digress, it was keeping her from sleeping!
We were working through her senses and investigating what could possibly be a problem that she couldn’t vocalise. We’d addressed the darkness of the room with blackout blinds, no that didn’t work. So we added a nightlight just beyond her bed so it was dull but enough to let her see outlines. That worked for a bit, then it didn’t, then it did again. We’d addressed the sound by playing her a lullaby CD and discovered the white noise that worked for her was a fan. We’d addressed her hunger and thirst.
So our attention turned again to temperature. She’s naturally quite a hotbot and she hated being swaddled. We already had tried a fan to help with temperature and discovered she liked the white noise so we kept it but it wasn’t the solution regarding her temperature at that time. We made sure everything was cotton and we stumbled upon an article about some bedding that was supposed to help children who couldn’t regulate their body temperature. We couldn’t afford it, but it got me thinking. She was sleeping on a foam mattress and on researching I found that foam is known to be warm, so we set about changing her mattress to a traditional pocket sprung one. This definitely helped her temperature but not particularly her sleep.
All the while that we were undergoing assessment for autism it was a job to get anyone to believe what a challenge we were having. Repeatedly we were asked if we had tried x, y or z. It was just that she needed routine. It was implied we just weren’t doing it right! We were at our wits end, trying everything. We hadn’t sat down together for a meal in years and i just wanted to have some awake time without dealing with children. I wanted my evenings, I wanted my sleep and I wanted her to have much needed sleep. She kept getting ill and I put it down to being sleep deprived. I put her anxious behaviour down to being over tired.
Continuing through the senses, determined to find the answer, we turned to smell. She had zero sense of smell up until age 5 and I tried so many aromatherapy room sprays that she was oblivious to until we stumbled upon one that she seemed to like. I remember the first time she mentioned any smell was with this night time spray, so that became part of the multi-layered bedtime routine.
We also spent a long time addressing what I believed to be anxiety. We worked with her about worries and got a guardian angel and dream catcher. We worked through visuals for the next day and had a timetable in place so she knew what was coming. I realise now that we didn’t spend enough time analysing what had happened during each day but with age and our experience and knowledge growing we now know.
She’d also wake through the night but the worst thing for me was being up so many times in the night with her and then her waking super early. She didn’t just wake up though, it was like someone had spent the moments she was asleep tightly winding a coil within her and on waking she’d PING into life. It was 0-60 the minute she opened her eyes and I’d spend the whole exhausting day playing catch up.
We tried bribery, we tried persuasion and promises, we begged her, we even shouted out of desperation at times. We tried everything. We were exhausted.
We eventually bargained with her that she could get out of bed and play/read quietly and not leave her room until her clock turned yellow. We extended the time by ten minute intervals over a period of months. This delayed her from getting us the minute her eyes opened – it took months but it worked and she is now pretty independent in the mornings if she’s has a good night and is not particularly anxious about anything.
One year into seeing the paediatrician who was assessing her, I mentioned our sleep deprivation for the gazillionth time and she finally seemed to hear me and suggested melatonin. That was the moment our life changed!
For us it was a liquid miracle. That first night, five years ago, she was asleep by 7.45pm! It was such a miracle that I posted about it on Facebook! Could this be it? Was the problem solved? Did we have our evening back? Could we actually sit down to have dinner together?
I’ll admit it didn’t completely cure her sleeplessness and she still woke in the night and got up early but to be honest we were so grateful to have our evening that we saw it as a huge win!
I remember during one assessment a counsellor, who was a supposed sleep expert, turned to me and said “…but she doesn’t look tired. She doesn’t sit yawning and she has plenty of energy”. I found out later that this was one of the things that rose suspicion that I was “making things up” about autism in our household. Because a (supposed) sleep expert didn’t see Little Miss H looking tired, I was allegedly lying about the problems we were having!! It still astonishes me today the level of judgement and ignorance that we were faced with. We were desperate and asking for help… In the end we helped ourselves.
Since then we have continued to build on what works for her and we are now onto our second weighted blanket as her first one is no longer heavy enough. There is no single obvious answer and over the years through trial and error, we have found it’s a combination that when blended together in the right way, work like a perfect cocktail!
The formula for a successful bedtime for Little Miss H now is dark but not pitch black, a fan for white noise and pointing at her to cool her down, she has to have deep pressure on her hip and shoulder joints whilst lying in bed and she has a lavender pouch, a hankie with my perfume and her favourite teddy bear to cuddle, She has water by the bed, a late snack and often an early morning snack too. She has a worry monster, a guardian, a dream catcher, worry dolls, visual timetables, a consistent routine, she has comfy clothes and a snuggly blanket, she has her book, a pencil and notebook in case she needs to write things down and she needs to know where we are. She still takes her melatonin, and she still has a pocket sprung mattress and cotton bedding.
She still wakes incredibly early – she just doesn’t need much sleep. It’s part of her, it’s just who she is. We accept that and we have turned our focus to teaching her how to rest, relax and use the down time. We work on mindfulness and breathing exercises and we have a communication book that if she is worried about anything she can write me a message and leave it on my pillow. I then see it when I go to bed, reply and leave it by her bed so when she wakes in the night she can read it and feel reassured.
It has taken 10 years and 8 months to get to this point. We are still exhausted as she still does wake in the night and still has trouble getting to sleep and still wakes up early BUT compared to where we were, we’re doing well. I have to thank melatonin. For us it made a huge difference. It still does. On nights when we forget to take it for whatever reason we really see the role it plays. I know it doesn’t work for everyone, but I am relieved and delighted that it does for us. I’m still knackered but I’m not completely broken, not yet anyway! We remembered the melatonin tonight and as a result I get my evening to myself. I’m off to watch Grey’s Anatomy!! #simplepleasures #selfcare