I’ve always loved my sleep. I need a good 9 hours to function well - When my son was born nearly ten years ago it only took him 9 weeks to sleep 7pm-9am and even that was early for me!
I wasn’t quite so lucky the second time around...a disabled child is twice as likely to have sleep problems then a child without disabilities.
Bella’s bad sleeping habits started as soon as she was born and took 3 years to become bearable (but not solved, unfortunately).
Not only was three years of no sleep unbearable for me it also affected Bella's movements, moods and health.
She was always run-down and catching anything going around, then it would take weeks and weeks to fight off. In the first three years, I was lucky if Bella slept 4 hours, and those hours would be before I had gone to bed and was ironing, tidying, or getting Ollie ready for the next day.
We all know that it’s important to keep to a routine; we never had any problems getting Bella into bed. It was the same routine every night bath, cuddles, stories, bed, at the same time.
She’d go off like a dream, it was staying asleep that was the hard part but I didn’t realise how important it is to wake at the same time every day also.
This all helps the brain to establish a firm routine. Not sleeping through the night obviously meant that Bella was tired through the day, we worked out that if she slept passed 2pm in the afternoon on any day then she would have an awful night’s sleep so we had to start keeping her awake after this time however tired she was.
It was very successful & instantly pushed the 11pm wake up to around 3am, although it was extremely hard work to keep her awake especially on the afternoon school-run to pick up Ollie – It involved lots of singing!
From a young age I also made sure Bella realised when she woke up it didn’t mean we got to watch TV, come into my bed, go downstairs, talk, or play. It can seem cold but I will only ask basic questions, or reply yes or no in the night. We have occasionally had to sleep on her floor but she doesn’t leave her room, its night time and she stays in her bed.
It never occurred to me in the beginning that Bella may feel unsafe or scared in her bed. I was advised to tuck her in really tightly so that she felt safe and could feel exactly where the rest of her body was.
It worked really well, along with having a firm mattress so that she could reposition herself if she needed to, if the mattress was soft she would just sink into it and get stuck in that position.
I keep the radiator in Bellas room off as she tends to overheat easily and was always waking up sweaty and uncomfortable; she doesn’t seem to feel the cold much.
We also purchased a small projector that shines pictures on the ceiling and plays music. We still use this now when she wakes in the night.
Bella is also very sensitive to noise and so we have ensured she has the quietest room in the house so she cannot hear what's going on downstairs or get disturbed when we go to sleep.
Sometimes Bella just wakes up uncomfortable.
If we have had a day out when she is in her wheelchair and the car, she can become extremely stiff.
I try to ensure that she sits with her gaiters on before bed and gets a chance to crawl and stretch but sometimes she might just need some Calpol to feel comfortable.
Bella was on Trihexyphenidyl at the beginning of the year and in some children this can cause disturbed sleep.
Unfortunately this happened to Bella, she literally stopped sleeping every night nearly all night!
This had huge effects on her moods and we had to come off it as she was about to start school and this would have had a huge impact on her learning and behaviour at school.
I didn’t want to put Bella on sleep medication as at the time I felt she was too young and I really wanted to persevere with trying without it but I really think sleep is so important that sometimes its the only solution.
Slowly over time all these little things helped Bella to sleep better at night time.
We still have at least one night a week where she wakes around midnight and just cannot seem to fall back to sleep until about 5. There doesn’t seem to be any reason for it other than her brain is wide awake.
However, one or two bad nights a week is heaven compared to the 7 days a week we had to endure for the first 3 years, the days after no sleep are painful, teary and slow, when you have had a good night's sleep anything seems possible!
Does your child take ADHD medication?