We recently had our referral come through to attend a sleep clinic with Amy.
Did you know that 20% of those diagnosed with cerebral palsy have some form of sleep disorder? Or 1 in 5 to phrase it differently.
I am not sure Amy has an actual sleep disorder, or if what we are seeing is purely behavioural. Her sleep pattern appears completely random.
She can go to bed any time between 5pm and 9pm... she can sleep through no problem... or she can be wide awake almost all night.
There seems to be no correlation between what she has done that day and how she sleeps, or what time she gets up based on when she went to sleep. She has me baffled.
She already has medication to help her get to sleep, in addition to the other medicines she takes to relax her muscles and ease her dystonia symptoms.
It's something I have seen so many of my friends with additional needs children go through and it can be truly debilitating and demoralising.
Last night I sobbed.
I got her into bed at a sensible time, we had a well-structured busy week all week and I have been going to a huge effort to ensure the hour before bed time is screen free. (Which is easier said than done with Amy who seeks constant high level sensory input).
I got into her bed with her and sang all of her favourite songs. Instead of bouncing up the bed on her bum and screaming... she lay there. She was looking right into my eyes.
There it was. My reward for hard work. The reason I do this every day and don't give up. I felt a real warmth in my heart and a matching connection.
It was what I know a lot of parents get with their child but for me I have to stash these snippets of loveliness away in my memory and hope to mask the often aggressive outbursts I am subject to.
Then suddenly WHAM. Out of nowhere it was like someone had flicked a switch in her brain.
She reached out and swiped my face with such momentum that my reflexes made me get to my feet instantly. I held my nose and checked for blood and could feel that I had received a wolverine-esque scratch vertically down my face. Moment ruined.
She had reduced me to tears. Again. The shock of the hit and taking away of my precious moment had my chin wobbling and the tears flowing.
I feel kind of silly writing this as to some I may seem oversensitive. But it has been this way day in day out recently and I can't believe the fat lips, black eyes and so on I have had.
I have had therapists in the past jokingly warn me to be careful because if this carries on I will end up with no teeth. It's one of those jokes that hold a truth. I like having teeth.
The lady from the sleep clinic had asked me if I thought it was accidental and perhaps her involuntary movements caused by her cerebral palsy were accountable.
To which I replied saying no... she has too much of a good aim! Her respite team too have felt the wrath of bedtime Amy.
We joke about it and also feel grateful that she has that feistiness about her. But for me it is a case of I laugh or I cry. Sometimes I do both.
I am nervous to start the sleep clinic course and have noticed already a few things I do that I shouldn't.
I know I will need to swallow my pride - I know a lot of parents do whatever they can "for an easy life" such as co-sleeping, keeping their child up late and so on.
I worry that tackling this behaviourally may not work - it may be a neurological issue? The sleep clinic team so far have been absolutely incredible.
I was worried I may be judged or be patronised.... they are so understanding and empathetic of our situation. They carry a wealth of experience and information that I can't wait to apply to us.
Knowing they are there to support me and are aware of our struggles is half the battle... it is clear Amy’s' dad and I can't do this alone right now.
There are so many reasons why a childlike Amy may struggle with sleep. It could be a communication issue - something is wrong but she can't tell me what.
It may be her muscles - I hear muscle spasms are very painful, and she has a lot of trouble silencing them to allow her to sleep. It could be a gastro issue - she is 24 hour GJ tube fed.
Could it just be that ALL 3.5 year olds are naughty when it comes to bedtime sometimes? This feels next level.
It could be positional - what if she slept too long in one position and now her neck hurts? We've all done that. I could go on and on speculating what causes her such distress.
I am not sure there is anything worse than either lack of sleep, or not being able to make your child happy.
Once she does go to sleep I am usually too tired to indulge in any hobbies (what even are hobbies these days, other than sleep!) and I go to bed. Once I get in bed I am wide awake.
My own sleep issues start to set in. I think of my many flaws and how I might be failing her. How can I be a better mum? Am I doing it all wrong? What if she hates me?
Of course she doesn't hate me... don't think that way. And so on.
The next day I start a pity party for myself, barely able to peel myself out of bed.
Copious volumes of coffee are ingested, YouTube goes on, and I wait to come to terms with the fact that in 12 hours’ time... we will start the whole routine again.
I am secretly hoping the nights getting darker earlier will help the transition too... however the purchase of blackout curtains seems to have gone unnoticed!
I'd love to hear any tips anyone has for sleep? I heard some parents have even tube fed chamomile or valerian tea to their child with some success.
I have tried sleep systems, nature sounds, swaddling, relaxation music, baths, sensory lights/bubble tubes, just anything and everything really.
Also tips for eye bag coverage would be gratefully received! Happy sleeping everyone.
I would also like to thank Amy's dad/my other half Phil. He is actually the best one at night in our house.
I know a lot of dads seem to get a bad reputation for this but he is the first one up usually to go and check all is okay. Thank you.