This is a summary of a recently published academic paper. Sleep problems were identified as one of the least well studied problems in the lives of people with an intellectual disability. It is an issue that affects the health and well-being of those who experience them, and also that of their parents/carers.
Our Sleep Service gives support to families whose children are having problems with their sleep. Claire Varey, our Sleep Practitioner in the north of England, shares some advice that recently helped a family she worked with.
“I recently worked with Iveta, Lucie and Nelli to address a sleep disturbance that was affecting the whole household. Nelli is 4 years old, she has Autism and doesn’t have verbal communication. Nelli is very active, ‘always on the go’ and getting her to settle at night time took hours. She was finally falling asleep between 12am and 2am.
Nelli’s mum, Iveta, had difficulty waking Nelli up in the mornings to get her ready for school. She was then falling asleep during the day which further compounded the issue. Iveta doesn’t speak much English so when she got in touch asking for help, I arranged to have a telephone consultation with Iveta’s other daughter Lucie who could translate for her.
During our call I was able to provide information to help Iveta understand Nelli’s behaviours. I suggested ways to help her calm and reduce the stimulation in the evening, which would reduce the time it took Nelli to fall asleep. Between us, we worked out a programme that Iveta felt happy she could follow each night, therefore helping Nelli learn how to fall asleep well.
Nelli was having difficulty understanding when it was an appropriate time to sleep and so we discussed ways in which Nelli could use signals to help her brain start to calm in the evenings. Firstly, I encouraged Iveta to get Nelli outside in the afternoon’s as much as she could and to add that into her daily routine. Movement is important and an excellent way to help release tension from the day, but I informed Iveta that too much jumping and bouncing too close to bedtime, or doing these activities in the bedroom, would only keep Nelli’s brain active and reduce the chances of her falling asleep. Also it appeared that Nelli may have associated her bedroom and bedtime as an extension of playtime rather than it being a calming and peaceful space where she should be sleeping.
We identified that bath time was quite stimulating for Nelli, so I suggested that she had her bath earlier to give enough time for her to calm down before bed.
I also suggested a later bedtime as Nelli was not showing any signs of being tired at the time she was put to bed. With this we looked at the hour leading up to bedtime, to introduce a calm activity for 15 minutes, such as massage, then offer some supper (certain foods promote sleep) and then up to the bedroom. I offered advice about using red light, dark room (blackout curtains/blinds very useful) and then to avoid too many toys or bouncing on the bed as these can distract and stimulate.
I arranged follow up telephone support, where we had could iron out a few issues, such as Nelli starting to wake and wanting to play on her tablet. I suggested using an object of comfort to replace the tablet, so that Nelli could make a positive association which was more appropriate than using the tablet.
I also suggested that they speak with school to reduce or stop Nelli’s afternoon nap, as this could also be having a negative effect on her settling at an appropriate time in the evening.
Nelli is now settling between 9-10 pm, waking easier in the morning, her behaviour has improved through the day, her aggression has reduced and she goes to sleep much calmer too.
Iveta is happy with the information and support she received and knows she can get back in touch if she needs any future support. She would also like to thank Mrs Moore in Broadgreen Primary School who helped to put her in contact with Cerebra”.
Head banging is just one of the issues that our Sleep Practitioners can help families with. It’s a difficult behaviour to eradicate because it generally happens while the child is sleeping. Often it’s only possible to manage the behaviour rather than being able to remove it entirely.
Often it’s the noise that the child makes while head banging that’s the problem, especially for the rest of the family.
Some strategies that may help include introducing a different sensory input, like white noise music for example. Also, if a child is banging their head against the wall, you could consider moving their bed away from the wall. Or, if your child is banging on the bed frame or head board, consider putting the mattress directly on the floor and removing the frame or board.
Sarah Coldrey, our Sleep Practitioner for the South West recently worked with a family who had a child who was head banging on his mattress. He wouldn’t use a pillow and, because his parent’s room was just next door, it was making enough noise to disturb the their sleep. Sarah recommended changing to a memory foam mattress or topper, with the hope that the mattress would be softer and potentially reduce the noise.
A few weeks later, the family told Sarah that they had purchased a memory foam mattress straight away and they had not heard their son head banging since.
Back in 2015, Sarah Coldrey, our Sleep Practitioner in the South West met with the Hunter family from Brixham.
The Hunters have three children and their eldest son, who has ADHD was having sleep issues. The fifteen year old wasn’t falling asleep until 5am most days and was missing a lot of school.
She recommended a technique called Chronotherapy which involves altering bedtimes each night. Instead of moving the bedtime backwards gradually as you would with young children, which takes a long time to do and isn’t as successful in older children, you move it forwards by a few hours each day.
Here is an example of how the times can be moved:
1st night: sleep at 4 a.m., wake at 12 midday
2nd night: sleep at 7 a.m., wake at 3 p.m.
3rd night: sleep at 10 a.m., wake at 6 p.m.
4th night: sleep at 1 p.m., wake at 9 p.m.
5th night: sleep at 4 p.m., wake at 12 p.m.
6th night: sleep at 7 p.m., wake at 3 a.m.
7th night: sleep at 10 p.m., wake at 6 a.m.
Sarah was reluctant to suggest this technique initially because of the need to monitor the times closely and consistently. However, the family were willing to try anything that could have a positive effect on their son, who had exams coming up.
Sarah followed up with the family a couple of weeks later and was delighted to hear that the technique had been successful and the teenager had been sleeping from 10pm-6am everyday for a week and had not missed school for a whole week, which was the first time in a long time.
Fast forward to eighteen months later and the now seventeen year old teenager is still sleeping well. He currently sleeps from 11pm-7am and has slept well since the programme was introduced. He goes to college now and doesn’t miss classes.
When Sarah caught up with the family she was delighted to hear that the family have still been experiencing success from implementing the programme. Lee, the father plans to implement the same plan with their younger son who also has ADHD and struggles to settle. Lee said he would definitely recommend the technique for children that aren’t falling asleep until the early hours and also commented that the programme gave him chance to spend time and bond with his son.
Claire, who is Cerebra’s Sleep Practitioner for the North, addressed the issues of settling, night waking, early rising and difficulty sleeping alone. There was also opportunity to look at ways to structure an effective bed time routine which can help to tackle some of the issues which are commonly highlighted by parents.
As well as the sleep presentation, there was also a sensory presentation by Jo Roberts who works as a physiotherapist at Ryegate Children’s Therapy Unit in Sheffield. It looked at the impact sensory processing issues can have on children with additional needs ability to settle and get ready for sleep.
When discussing difficulties with sleep, sensory difficulties was a topic that was frequently mentioned by parents and carers, so the response to the forum was high.
The feedback following the event was overwhelmingly positive and also highlighted the need for a longer session covering information on sensory difficulties.
One parent said on the day ‘everything that Jo spoke about was like she was describing my son, she hit the nail on the head. I am really looking forward to taking the information I have learned today and getting started as soon as I can’. Another parent noted ‘the combination of sleep information backed up by the sensory presentation has given me lots to think about and how I can alter the small things that will hopefully make the difference in helping my daughter get more sleep’.
Burton Street Foundation provided a fantastic venue and parents had the opportunity to have a welcoming cuppa and cake, whilst also being able to chat with our colleagues from Contact a Family and Core Assets, who had stalls at the event too.
Our Sleep Service helps families to get a good night’s sleep. One of our Sleep Practitioners, Claire Varey, explains how her advice on establishing a good bed time routine helped a family to make some positive changes:
“I recently worked with a family whose little boy is 3 and has a diagnosis of Autism. He struggles with night waking and settling without his mum. Ben was falling asleep in mum’s bed each night and they would then move him to his own bed once he was asleep. He would wake most nights and have difficulty getting back to sleep without mum. He was also sleeping for long periods through the day at nursery.
We spoke about the benefit of using a calming bed time routine and, as mum wanted Ben to stay in his own bed, that the routine should finish in his bedroom, rather than in her bed. We discussed his current bedtime and identified that having a bath before bed was actually stimulating Ben. I suggested that they move it to earlier in the evening, so that he had time to relax again before bed.
Ben responded well to visual prompts, so we agreed to introduce a visual timetable to the new bedtime routine. We spoke about starting the routine an hour before mum felt he fell asleep, turning off the TV to reduce stimulation to his brain, and choosing some calming activities he could do for about 15 minutes. As a visual aid, we thought about getting a box with some activities in, which is only to be used at bedtime. Following this, I suggested offering a supper of banana and warm milk before taking Ben to the bathroom to brush his teeth.
I felt it would be useful to prepare Ben’s bedroom, using blackout blinds and a red night light, a calming smell such as Lavender and playing some calming background music. Also, once Ben is in the room and changed into his pyjamas, to offer some massage, so that he could relax further. Hopefully by this time, Ben should be a lot calmer and starting to feel tired. He also enjoys having a story read by mum, so ideally this should be a short and familiar story, and as the routine gets repeated in the same order, he will come to understand this is near the end of his routine.
We agreed that Mum would then stay with Ben until he falls asleep as the new routine starts, with the aim of gradually moving towards more independent sleep once the routine is firmly established. When he wakes at night, as the light, smell, and sound are all the same as when he falls asleep, it can help him recognise this is still night time.
After a few weeks, mum told me that since implementing these ideas Ben’s nighttime waking has reduced and he is better able to fall back to sleep when he does wake. Mum also spoke to nursery about not letting him sleep for so long or as late in the afternoon. As Ben was achieving longer sleep through the night everyone was getting more sleep and Ben’s mood was now much happier through the day. The whole family can now enjoy their time together”.
If we can help you with a sleep issue get in touch with us on 01267 244210 or e-mail us at email@example.com.
On Saturday 23rd July we held our first Cerebra Sleep Walk to the top of Pen-y-fan in the Brecon Beacons. The moonlit walk was held to raise awareness and funds for our Sleep Service.
Our intrepid walkers gathered at 7pm and, following a safety briefing from the mountain rescue team, grabbed a glow stick and set off on the climb to the summit. There was a real feeling of camaraderie with everyone supporting each other, giving encouragement and moral support when needed.
As night drew in at the summit Cerebra Ambassador and mum, Tor Goodman, gave a powerful speech about just why Cerebra’s Sleep Service is so vital. This was followed by a mountain top auction of prizes donated by local businesses – this may be a world record for the highest altitude auction ever held (awaiting confirmation by Guinness World Records!).
There was time for a great group photo lit by an illuminated SLEEP sign made by our Innovation Centre, before descending in the darkness with torches and glow-sticks to light the way.
We all know that sleep deprivation can make us feel like we’re climbing a mountain but can never reach the top. We understand that, for families with children with a brain condition, sleep deprivation is a part of life and a continuous mountain to climb. Our Sleep Service supports families to get a good night’s sleep.
Thanks to everyone who joined in the walk and who sponsored those who did – you support is very much appreciated.
The walk was such a success that we are planning another night-time adventure in the Yorkshire area and will be announcing next year’s Pen-y-Fan date soon.
Our Sleep Practitioner Pattie Everitt has helped another family with their sleep issues.
Nine year-old Ella, who has ADHD, was struggling to get to sleep. Her mum climbed in with her between 7:30 and 8:30 each night but Ella wasn’t falling asleep until about 11pm.
After thoroughly understanding the family’s situation Pattie was able to give the following advice:
- Avoid exposure to a lot of light up for the two hours before bedtime. This includes using computers, tablets, T.V., phones etc as they emit a lot of blue light (which stops the sleep hormone melatonin from being released).
- Try moving her bath time nearer to bedtime/ sleep time so that it is part of her bedtime routine. Introduce massage if she is ok with this as this can release feel good hormone which might aid sleep.
- The more relaxed she is the better, so keep bedtime a positive time and avoid confrontation.
- Try a later bedtime (or 11pm) with the routine in place, and then make this earlier by fifteen minutes each day until you get to a more suitable time.
The family tried out these tips which have had a positive effect and Ella is now settling at around 9:30pm.
Ella’s mum said: “Pattie really helped our family with ideas for Ella’s sleep. Some things that she suggested really surprised me but I followed some tactics and they are working. It’s really helped us to have support. Thank you.”
Sarah Coldrey, Cerebra’s Sleep Practitioner for the South West, has just returned to work after taking a year’s maternity leave to look after her new baby, Theo. Theo was born at just 29 weeks gestation but is now coming on in leaps and bounds. Sarah told us about her experience:
“I was rather shocked when my waters broke at 28 weeks. I was sent to Derriford Hospital in Plymouth, where one week later I gave birth to my son Theo James Coldrey at 29 weeks gestation. He weighed 2lb 14oz.
Theo was immediately taken to neonatal intensive care and was supported with oxygen, kept in an incubator and tube fed with expressed breast milk.
He remained in the incubator and on oxygen for 5 weeks. Theo was then transferred to Torbay hospital where he was able to go into a normal cot, no longer needed help with his breathing and began to transition to breast feeding. We stayed in Torbay hospital for 3 weeks.
Theo and I were able to go home after 8 weeks. He would have been 37weeks gestation at this point, but was actually already 2 months old.
Theo will be turning 1 this weekend (8th May) and is gradually catching up with his peers. He is a happy, inquisitive boy who definitely know what he wants. I admit that I am happy to be back at work part time!”
Sarah is Cerebra’s Sleep Practitioner for the south west. We have a team of sleep practitioners covering the UK who can offer help and advice on sleep issues, including settling problems, difficulty sleeping alone and early rising. You can find out more about our sleep service here or contact us on 01267 244210 or firstname.lastname@example.org.
Preventing premature births is a cause close to Cerebra’s heart. We fund research at Leeds University into understanding premature birth and predicting mums at risk of early delivery. Our aim is to prevent it from happening, so that fewer babies need neonatal intensive care and do not suffer the complications of being born too early. Over the period of Cerebra’s funding this work has led to a fall in premature birth rates with almost 350 fewer babies each year being born too soon. You can read more and watch a short film here.
No one likes sleepless nights but for families of children with a brain – related condition, sleepless nights can often become the norm. Our Sleep Practitioners are there to advise families on sleep issues and ultimately improve everyone’s quality of sleep. Sleep Practitioner Claire Varey covers the north of the country and she told us how she was recently able to help a family:
“Mum Sara came along to one of my sleep clinics to discuss the issues she had with her son Lewis’ sleep for a long time. Lewis is 9 years old and has autism. He struggled with changes to his routine, taking hours to settle at night and needing mum to be present until he fell asleep. Lewis would then wake through the night and come into mum’s bed. Sara wanted to be able to reduce the time taken to settle Lewis at night, but found most things she tried in the past did not work.
By giving Sara information on how we sleep, what influences and inhibits sleep, she was able to better appreciate what would effect his ability to fall and stay asleep. Some of the suggestions I made for bed time routine included turning off the TV an hour before bed, placing blackout sheeting on the windows (Sara had tried blinds and curtains, but he had always pulled them down in the past), introducing red light in bedroom and trying some Delta wave music to listen to when in bed.
Sara felt sceptical that these would work, but was willing to give the new routine a go.
I contacted Sara the following week to see if she had managed to get started and she was so pleased to tell me that she had tried all of the above and Lewis had reacted positively to the changes. He was already settling easier and quicker, and Sara had even been able to leave the room before he fell asleep on one night. He seemed tired at the point he was in bed and asked for his ‘relax music’. He appeared to have a better quality of sleep, not waking as early and Sara was happy for him to come into bed with her at that point. Lewis was waking in a better mood very quickly”.
Sara told us: “The help Claire has given me has worked by getting Lewis to go to sleep in his own room again. Even though he is not staying there all night, he is spending longer in his room than before and this is getting better. Most nights he will now sleep about 3 or 4 hours in his own bed. This is great because before he wasn’t staying in his room more and half an hour.
Claire was brilliant to talk to as she didn’t make me feel like a failure or made me feel judged. She had a lot of very good ideas that I had tried before but this did not stop her coming up with more. I did it in steps – the delta music first which did help a bit, then came the red light bulb. Both together works really well. I then got some black out film for his window with his black out blind he already had. That really helped and because that has made him calmer I have been able to put curtains up which has also made a big difference.
Claire gave me the confidence to try these things with him and also the music idea has helped us with some of his autism melt downs so a big thank you.”
You can find out more information about Cerebra’s Sleep Service on our website.