They really take it out of you. But imagine if you were woken most nights because your child just can’t sleep. It’s a problem that many parents of disabled children talk to Scope about. Here, Helen from Peterborough describes her son’s nocturnal adventures – and how our Sleep Solutions programme is putting an end to their sleepless nights.
My son is 10, almost 11, but he thinks he’s about 35!
Luke has Down’s syndrome. He’s full of beans and has no fear of danger.
Luke used to sleep well, but when he changed schools last September he missed his old friends and I think the change in his routine must have unsettled him. He has no problem getting to sleep, the problem is that he wakes up fully alert in the middle of the night and gets out of bed. This could happen four or five times a night. Once he’s awake, he gets bored.
That’s when the trouble starts
Once, he got up at 4am and tried to drive my car. I didn’t hear him open and shut the front door or get into the car. Luckily a neighbour noticed – he just happened to look out of his window and saw my car with all the lights on.
Another time, he almost set the house on fire. I woke up to hear a strange clicking noise, opened my bedroom door and saw Luke sitting on the landing. He had the fire lighter and he was transfixed, looking at the flame as he burnt the tassels at the end of a wool rug. As I carried it downstairs, the rug caught fire. I was in total shock.
That was the wake-up call for me. I realised I had to do something to help Luke sleep before he hurt himself or someone else.
Support from Scope
Sleep Solutions was such a great help. The beauty of the sleep team is that they really do care – you can just tell they do. They take time to get to know you and your child which helps them establish the specific sleep problem and how to treat it. You don’t get that level of support from a book; it’s the human contact that makes all the difference. They gave us a routine for bedtime, which is surprisingly difficult to achieve. Sometimes, it’s basic stuff that you already know but having support from Scope’s sleep practitioners makes it easier to put into place.
Our sleep practitioner came to our house and got to know us. She looked at Luke’s bedroom and how it’s laid out. We realised that Luke often gets cold in the night because his single duvet slips off, which wakes him up, so I brought him a queen size duvet and also got him some black out curtains.
Scope told me about foods which contain melatonin from a brain chemical called serotonin which can trigger sleep. I took this information and started doing some web research, there’s loads of information online. I now try to include more bananas, turkey, chicken, nuts, milk, honey, salmon and tuna in Luke’s diet. I also look out for foods which contain Tryptophan, such as cereals like porridge or anything that contains oats, which aids sleep. I don’t give Luke any coca products four hours before sleep, so if he does get a chocolate treat it’s as he gets home from school or mostly weekends.
The difference it’s made
Today, I spend a lot more time on Luke’s night routine. I didn’t always bath him at night but now I make sure I do, because it helps him relax and is a signal that it’s time to go to bed. Sometimes, Luke still wakes in the night but he usually goes back to sleep on his own. He knows if he gets out of bed and starts messing around, he won’t get his reward at the end of the week.
His school has noticed the difference too and his teachers are really pleased with his performance now. He’s been held back for the last couple of years but they say he can move into the next class soon.
Support services like Sleep Solutions are so important to parents like me. The Government is cutting so many services at the moment, it feels like parents of disabled children are being abandoned. That’s why it’s so important that Sleep Solutions carries on doing such great work.
Please make a donation to support more families like Luke and Helen get the support they need.