Tag Archives: sleep

Are you desperate for some zzzzZZs?

We are currently running a sleep appeal. Has your child ever had problems sleeping? Read more about keeping a sleep diary.

Parents of any newborns will know that sleep is a rare commodity. But did you know that 80% of disabled children experience sleep issues? And these can last for many years.

Sarah is one mum who was experiencing extreme sleep deprivation. For five years her daughter Florence, who has autism, would regularly wake up to seven times during the night. It meant Sarah was often surviving on just two hours sleep.Woman sitting on the floor looking stressed outside a child's bedroom door

“She is overtired – I am tired, stressed, angry….”

Sarah was referred to Scope’s Sleep Solutions service. Thankfully, our sleep practitioners work with disabled children and their families to find practical solutions to sleepless nights.

She was encouraged to create a new sleep routine, after learning lots of practical dos and don’ts. These included a later bed time, dimmed lights, a warm bath, pyjamas upstairs only, and some massage. It ended with the last word being said to the child:  “sleep”. Amazingly, after only three weeks, things started to drastically improve.

“The new routine needs to start later – Flo doesn’t need as much sleep as I thought!”

Sarah kept a diary during the sleep programme, and here’s how she got on…

Week 1

Handritten sleep diary that shows how many times  the child was getting up during the night for the first week of the sleep programme, seven in some cases“I am so tired….I called Maxine, and she kept me going.”

Week 2

Handwritten sleep diary for week two of the sleep programme, says "Feel a lot better already, is this actually working?!"

“Straight back to bed, no engaging in conversation, give her a kiss, tuck her in, and last word is ‘sleep!'”

Week 3

Sleep diary that has much improved sleeping patterns from the child, and says "I feel like I have my energy back!"

“I feel like I have my energy back!”

You can watch our film featuring Sarah to hear more about how she got on.

Did you find this information useful? Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

If you need any sleep tips, or have any tips you’d like to share with other parents, visit our online community.  

Better sleep for disabled children

Guest post from Emma Sweet from Scope’s sleep team.

Emma holding a sign which says - Desperate for a good night's sleep? Ask me anythingThanks to everyone asked questions during our sleep question-and-answer session on Facebook. We had a big response.

We run workshops which cover all the basics in addressing sleep problems and provide a toolkit to address your child’s sleep problems. Our workshops are for 10 professionals and 10 parents. If you’re interested in booking, email sleep@scope.org.uk.

Tips for tackling sleep problems

Boy sleepingI hope you can join us for one of our training sessions. In the meantime, here are some of my tips you might like to try for dealing with sleep problems:

  1. Certain foods can help at bedtime – 1 hour before bed – like bananas and warm milk. Food and drinks with colouring or sweeteners can affect a child’s ability to settle at bedtime.
  2. Some children use bedtime as an attention seeking exercise, attention, good or bad, is all attention to a child. Children are clever, and find some amazing distraction techniques to avoid going to bed.
  3. Some children are lacking a routine at night time or haven’t learnt appropriate behaviour at bedtime. Visual clues and consistency are key for all children. Children with learning difficulties may not understand why or when they need to go to sleep.
  4. Addressing sleep problems is exhausting for all the family, but given time, patience, and support they are many approaches that will help.
  5. Older children and teenagers naturally experience a shift in their body clock, meaning they want to go to sleep later and get up later. Modern technology impacts on this even further.
  6. Many disabled children need moving and repositioning in the night, if you do this near the time of one of their natural night wakings they are more likely to wake up. You need to work out when they are in a deep sleep so if you do it then they are less likely to wake.
  7. If your child suffers with anxiety, the physical symptoms of anxiety will impact on their sleep. Try doing anxiety exercises at the beginning of your bedtime routine.
  8. Many people think sleep problems are linked to a child’s impairment. This is not always the case – there are many causes of sleep problems which need to be explored.
  9. Research has shown that using a behavioural programme to address sleep disorders can help almost all children. However it can take longer to see improvements if a child has a neurological condition.

More about Scope’s sleep support for families and professionals.

My son tried to cook dinner and drive my car in middle of night!

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.

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.