About sleep
What some families said about sleep:
"Sleep deprivation is a major issue in our house. My son always wakes during the night. Sometimes he will return to sleep but he can also be awake all night, very active and vocal. He has been prescribed Melatonin, which helped at first but he seemed to become tolerant to it. We also try to maintain a routine at bed time which includes, bath, teeth, and book. He likes to have someone with him at night but we are withdrawing our presence, so I can usually be found on the landing wrapped in a sleeping bag. Respite is in short supply but we have been told that one night a week may be available from September."
"I worry what will happen when I am not here to look after him anymore. I never dreamed that I would have a child who I would have to look after twenty four hours a day, and stay awake for the rest of my life. I recall many moons ago the nights’ sleep I envisaged when my babies would sleep throughout the night. Now all a distant memory. I sleep with my 13 year old son each night, with the very occasional night off when his father graces us with his company. I feel my life is all but over, I have no social life, no hope of ever meeting another partner. Who would want someone who can never share the same bed?"
"I get so tired I dream about sleep during the day. Not holidays or having fun, just sleep. Some nights I get around 5 hours, others as little as 3. I find it hard to get motivated because often have an aching sensation in arms and legs because I am so tired and I get weepy. I forget things all the time. Friendships are few and far between because I have become so lousy at calling people and keeping in touch. I used to be Mrs Efficient And House-proud, not any more. I blunder through each day from one thing to the next."
What our research said about sleep:
The work of the Handsel Trust into sleep
Having discovered the extent of the problem, we are committed to spending the next three years looking at the issue of sleep. This work encompasses the following:
Raising awareness Through our website, publications, training and other events and through media coverage, we intend to raise awareness of the issues around sleep for the families for disabled children.
Networking Our Sleep Network has brought together interested agencies and practitioners together to share good practice and useful resources, and engage in brainstorming and the sharing of good ideas.
Practitioner training We have developed a two-day workshop for health professionals looking to offer effective support to families experiencing sleep problems. Details of these workshops can be found here.
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