Tag Archives: sleep solutions

“They told me Evie may never sleep”

Meet Sarah, whose daughter, Evie, suffered from severe sleep issues for the first six years of her life. The lack of sleep affected every aspect of Evie’s life, including her health and her ability to get on at school. 

Have you ever gone without sleep? If you have, maybe you’ll understand when I say I don’t know how we survived. My six year old daughter, Evie, slept for as little as two hours a night, and it affected my whole family.

Living a nightmare

It was a nightmare – that’s the best way I can describe it. Except a nightmare ends when you wake up. This didn’t. There was no escape.

We felt terrible through the day and the night. As many as 80 percent of disabled children have sleep problems, and Evie, who has autism and hydrocephalus, was severely affected. Any loud noises frightened her. Bright lights hurt her eyes. She was very tearful, and emotional. She was often ill. She began to hate school because she struggled to make friends and spent a lot of time alone.

I knew how she felt, because I was tired, drained and often ill myself. I felt isolated too. I felt like no one understood. When I asked for help, I got nowhere. I was told that disabled people just don’t sleep, and that we just need to learn to live with it. But we couldn’t.

Finding a solution

I find it unbearable knowing that there are disabled children and families still trapped in that nightmare, thinking that there’s no way out. Because there is – there’s Scope.

I can’t tell you what it felt like to finally find help. Scope understands how severe sleep problems are, and how profoundly they affect a disabled child and their family. Most important of all, they have solutions – tried and tested techniques that can be used to get a disabled child to sleep. Their Sleep Solutions service runs training workshops and clinics for parents like me.

The training came at just the right time – I was at a really low point and was losing hope that things would ever get better.

Techniques that work

With Scope’s help, I looked at everything we did again – from what time Evie and her little brother, Isaac, got into their pyjamas to what we did before bedtime. I learned that even though watching television seemed to calm them down, the light from the screen tells their brains to stay awake.

The training even taught me what kind of food we should eat to induce melatonin – the hormone that makes us go to sleep.

We put together a new routine for bedtime, and I stuck to it even though the first ten nights were exhausting. There were times when I felt like giving up again, but Scope was there for me.

Now our nightmare is over

As the weeks went by, Evie woke up fewer and fewer times during the night. Her behaviour during the day improved too – she became much calmer. Isaac asked me if I had a magic wand that had made Evie nicer. But it was sleep – just sleep.

Except it isn’t ‘just’ sleep. You only realise how important it is when you don’t have it.

Thank you for your support

Your donations help Scope run this vital service which made such a difference to my family.

Sleep is so important to a child’s development. It helps them grow, learn and become more independent – it’s a key part of ensuring disabled children get the best start in life. And that means it’s vital to Scope’s work to make sure disabled people have the same opportunities as everyone else.

I’ve seen the difference Sleep Solutions has made to Evie. She’s now doing well at school. She’s gone up five reading levels in six months and it means so much to me to see she has two new friends. She doesn’t just sit in a corner with ear defenders on any more. She can finally play, like any child should have the opportunity to.

Now I work for Scope Sleep Solutions myself and help other families who have gone years without support. Thank you for making my work possible.

We plan to expand Sleep Solutions so Sarah and the team can provide vital support to more families. If you’d like to make an extra donation you will be helping to make sure disabled children get the best start in life.

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.  

“My husband and I had to sleep separately”

We are currently running a sleep appeal. Has your child ever had problems sleeping? Here’s Sarah’s story.

Florence has autism and sensory processing disorder. For five years Florence wouldn’t sleep alone, meaning Sarah and her husband slept in separate beds so one of them could be with her. 

Florence always had sleep problems but they became worse as she grew older. My husband Nick and I had to sleep separately to guarantee some sleep for at least one of us. We had to stay in separate rooms because Nick was getting up at 6am to go to work and didn’t get back home until 8.30pm.

It was important from a family perspective that he at least got sleep on some nights so he could function at work. I could sleep when Florence was in pre-school, then Nick would take over at the weekends or nights when his next day was not so busy. We lived very strange lives.

We tried Florence sleeping in with her sister Isabella, because we thought she was scared to be on her own, but she still wanted us to stay with her until she went to sleep. She’d get off to sleep at 10.30pm and then be up again at 11.30pm. When she woke, she would be wide awake immediately and say she was bored.

Sarah with her husband and two daughters, sitting in a field
Sarah and her family

The toll of no sleep

It was difficult being in separate rooms because Nick is my true love. But part of Flo’s autism is her desire for routine and giving her that routine, at least, helped in some ways. However, because you’re under par having not slept, you have irrational thoughts all the time.

Because Nick and I were not sharing the same bed, I started to feel insecure about our relationship. If we weren’t the couple that we were it could have split us up. Fortunately our relationship is, and always has been, rock solid and it remains so.

Sarah, her husband and two daughters holding hands in a forest
Things started to change for Sarah and her family once she came across Sleep Solutions.

Discovering Sleep Solutions

I heard about Scope’s Sleep Solutions from a friend. I went to a workshop. It was ground-breaking for me, absolutely ground-breaking. Nick and I hadn’t had a night out in four years because we couldn’t get a babysitter that Flo would accept. We thought there was no end to it.

I came away from the Sleep Solutions workshop excited and empowered, and it wasn’t just me. I came home and shared everything I’d learned with Nick and we put it straight to work. The results were incredible.

Family life now

All of our lives have changed completely since this happened in June 2014. Florence sleeps well regularly and we still can’t believe it. I think I have just about caught up on my sleep after five years.

I don’t have bags under my eyes anymore. I have energy again and I feel like I’ve got fun in my life. I can spend time with my kids without being tired all the time. Family life is much better; Isabella can spend time on her own and Florence is much nicer to Isabella because she isn’t so tired all the time.

On last year’s summer holiday Nick and I spent every night of the two weeks in our own bed, with the girls in their room – that had never happened before!

Sarah is the face of our sleep appeal this summer.

Please donate to our sleep appeal so that more families of disabled children can get the support they need.