Tag Archives: best start in life

“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.