Lots of children with disabilities have sleep issues. Whether it be sleep apnoea, behavioural or something else entirely……
You see so many posts about sleep deprivation. I’ve read so much of that advice. I have tried every trick in the book to get Evie to sleep.
As a baby she was an average sleeper…she was ok. As she grew she did wake regularly but I assumed that was normal. Up four times minimum in the night for over 20 mins at a time was my life for years.
As we were going through the process of realising that Evie had sensory processing disorder, her sleep issues got dramatically worse. Not long after starting year one of mainstream her sleep disappeared. I called her my Duracell bunny. She just kept going. She has no off switch, not even a pause. When she’s awake that’s it. And she rarely calms.
Evie began to get up, up to 50 times a night. I KID YOU NOT. So I researched. Yes, she had mild sleep apnoea, but since her tonsils and adenoids were removed, that had improved. Yet her sleep reduced. I would put her to bed; she would bounce back up time and time again. I sat outside her room on the landing for hours and hours at a time. Night after night, after night. Stair gates wouldn’t have worked. She would have climbed over them. She would have hurt herself.
It would regularly be after one when she slept and it didn’t last long. Friends and family tried after we reached the end of our tethers. They too admitted defeat and said that they hadn’t believed us when we said what it was like.
We were exhausted. Evie was exhausted. Her behaviour deteriorated.
We tried everything – we followed OT advice; GP advice; had alarms installed so we knew when she was out of bed; DSA guidance; sought advice from a sleep charity….got ignored by so-called sleep experts when we posted questions asking, nay begging, for help. We kept a sleep diary. THE MOST DEPRESSING DOCUMENT I HAVE EVER KEPT. We didn’t realise how often we were awake and in and out of bed. A week of keeping this diary, I knew it was serious enough to seek help. We had literally just been surviving night after night, hoping it would get better for her and in turn, us.
Essential oils massage
Lavender spray (Harry Potter magic we call it – don’t ask!)
Set bedtime routine every night
Changed the time of going to bed
Bedside light on
Bedside light off
Controlled crying (if she actually stayed in bed long enough)
We were contemplating Velcro pyjamas to stick her to the bed!
Then under GP guidance to try to ‘break the cycle':
Travel sickness medicine
We sought help. A referral to CAMHS. I pinned my entire hope on that appointment. I had read every bit of advice on behaviour going and had employed the tactics. It made no odds. Nothing had changed. So I hoped this would be different. It was. They told me everything I’d already read except they didn’t listen to me. They made me feel like it was all my fault. I came out of that appointment in tears. I did what they said (which is what I’d already been doing). Shockingly nothing changed. I followed their advice to the letter. Yet Little Miss Boomerang would not sleep.
We finally medicated to try to break the cycle. Antihistamine, travel sickness pills…….failed.
A last resort – melatonin.
I was nervous. We didn’t want to medicate her to sleep. I’d read every article and piece of research going. Melatonin worried me. A synthetic hormone unlicensed for the under 65s in the UK. But regularly used and sold even in Walmart in the USA. We were desperate. She was shattered. She was aggressive and nasty because of how she felt.
One dose of melatonin and she slept. It truly is a wonder drug. I know that there is research suggesting the long-term side effects aren’t known. I know this.
I also know that Evie was so desperately tired that she was not Evie any more. She was aggressive and intolerant. She wasn’t fun to be around. She was unpredictable and at times, she scared me. Some admission huh?
So what’s my point?
I don’t think that we are the only ones who have these issues. This is my message to you, oh seriously sleep deprived ones….
Firstly, if you’re having these issues, you aren’t alone. I know that doesn’t help. I will NEVER say that others are worse off than you. Sleep deprivation is the pits. You do have company though….*waving hi*
Secondly, definitely try alternatives. Try essential oils, try deep compression, try weighted blankets….but don’t be afraid to try medicine if you absolutely have to.
Thirdly, routine is key too. Set bedtime, set routine for bath – keep it calm, few toys and bubbles, make it simple and not drawn out, milk and bed, story, light (on or off) and final 'Night.'
Fourthly, you may feel like this is your fault. I severely doubt that it is. Sleep deprivation sucks literally. It drains you physically and emotionally. When you have had months and years of sleep deprivation (and I’m talking proper sleep deprivation here, not one or two nights) it begins to take its toll. On your health. Physically and mentally. Don’t underestimate how it can affect you. I minimised it for years. I thought it’ll right itself, we can cope. All the while I was a walking zombie.
Fifthly, don’t be afraid to ask for help. There is help out there when you’re having such a torrid time. Don’t belittle what you’re experiencing. Keep a sleep diary.
So where are we now in our bedtime story?
Evie now sleeps, sometimes. It’s far from perfect. Some nights she wakes up lots or doesn’t sleep at all (like tonight), even with melatonin. Others she sleeps relatively ok. We still tiptoe around the house because it doesn’t take a great deal to wake her. But she’s still in bed more than she ever was and I’m off the landing…..win! There is no pattern at all to her sleep. It’s just utterly unpredictable….she loves to keep us on our toes! Her sleep problems aren’t her fault. It’s just one of those things. There are lots of conflicting reports out there about people with Down’s syndrome having naturally low levels of melatonin and this is why the medication works so well with them. I don’t know if that is true or not. I just know that as a rule, she sleeps better after having had her melatonin.
And the nights that happen like this and when she falls asleep on me, I enjoy them. She’s a gorgeous little girl after all and who doesn’t love a cuddle at bedtime?
If this is happening to you, don’t give up. Keep a sleep diary, as depressing as it may be. There is support out there. I had help from friends to get me to accept that Evie had a serious sleep issue. It’s far from perfect still, but we’re not alone. And when she gets used to the melatonin, I won’t hesitate to ask for more melatonin or for more help. I know that social services can help in certain cases.
So don’t suffer sleep deprivation in silence. Please seek help. It’s not just for you but for those who you care for too.
Read more of Kirsty's blogs about Evie's development and their family life here.
The content of these blogs/webpages reflects the thoughts, opinions and experiences of the individual writer and does not reflect the views of Family Fund. Always consult your doctor or other medical professional before taking medical action or changing your or your child’s health routine.