Tag Archives: Sleep

Understanding and Reducing Sleep Disorders in Children with Developmental Delay

Dr Caroline Richards and Professor Chris Oliver from the Cerebra Centre for Neurodevelopmental Disorders talk about the Sleep Project which aims to understand and reduce sleep disorders in children with developmental delay.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this. We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects: We have completed five core components to date.

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge: A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators. Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website.

The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep. Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People: The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

You can find out more about the Sleep Project here. You can also find out more about the work that the Cerebra Centre for Neurodevelopmental Disorders does here.

Accredited workshops on Accessing Public Services, DLA and Sleep

Guide to claiming disability living allowanceWe are delighted to announce that our workshops on Accessing Public Services, DLA and Sleep have been accredited by the CPD Certification Service.

This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

Our research has shown that families can experience difficulties accessing public services, completing the Disability Living Allowance (DLA) forms and with their children getting a good night’s sleep. Our workshops aim to give families the knowledge, skills and confidence they need to tackle these issues.

Accessing Public Services

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This workshop can support you by unpicking potential problems and give you the tools you need to resolve them. The workshop will help you get the best out of our Accessing Public Services Toolkit.

DLA

This workshop will help you to use our DLA Guide to complete the DLA claim form. It also looks at the common problem areas, busts some of the myths around DLA and gets you to assess whether you’re getting the correct rate of DLA for your child (if you already claim it). If you’re not, we’ll talk about how to go about challenging the decision. The workshop also takes a brief look at related benefits.

Sleep

We will help you to understand and support your child’s sleep. The workshop looks at why sleep is so important, what can affect it and strategies to improve problems such as settling, night waking, early rising and sleeping alone. The workshop supports the advice given in our Sleep Guide and by the end of the workshop you should feel more confident to tackle your child’s sleep problem.

If you would like to host one of these workshops please call us on our Freephone number 0800 3281159.

Impact of Headbanging and Sensory Issues on Sleep

One of our Sleep Practitioners explains  how she helped a family struggling with head banging problems:

“Mary came to one of our sleep clinics looking for advice on her  eight year old son George who has epilepsy.

George was head banging every night, throughout the night. Mary was concerned, as he would head bang so vigorously that it would wake him up and therefore he has a very disturbed night, as did the rest of the family.

Some research suggests that head banging can be reduced by introducing a different sensory input. I suggested introducing a fan at bedtime especially as we were having quite warm weather. A fan creates white noise (a steady, unvarying unobstructive sound).

I followed up with Mary after a couple of weeks and was amazed to hear that the head banging had significantly reduced, to the point where the sores on his head had improved dramatically. I didn’t want to count my chickens, and wondered if it was just a short term fix so agreed to follow up with Mary again in another few weeks. When I spoke to Mary again I was delighted to hear that the head banging had remained reduced and George was getting significantly more sleep.

Mary said: “We have tried so many things in the past, weighted blankets, music, lights on and off and even tried white noise through a machine but the fan we use is much louder than you would think would be conducive to good sleep. Since using the fan he only wakes a couple of times a night, can usually be resettled easily and even says in bed until around 6 am. For some reason the loud noise really calms him. We would never have risked it, had it not been suggested. Thank you.”

You can find out more about our Sleep Service here.

Sleep Practitioner Sarah Tells of her Own Experience of Sleep Training

Sarah and Theo

Sarah and Theo

Our Sleep Practitioner Sarah Coldrey is used to helping families with their sleep difficulties but, as she explains, that doesn’t mean she doesn’t experience the same difficulties with her child Theo. Theo was born prematurely and Sarah updated us on his progress as well as how she settled Theo into a better bedtime routine.

When Theo reached one we found that we were in a fairly good routine. He would wake around 6.30am, have 2 short naps a day and then bedtime was around 7pm. He was generally asleep within 10 minutes.

We followed the same bedtime routine every day. At 6.15pm he would have a bottle of warm milk downstairs, we would then go upstairs and Theo would have a bath for about 15 minutes. We would then go straight to the bedroom and get into pyjamas. Once ready for bed we would sit and read a few stories in dim lighting. I would then carry him to his cot and sing twinkle twinkle little star, I would leave the room and Theo would self-settle to sleep in a dark room with black out blinds, sometimes he cried but it was only for a minute or two.

Between ages one and two Theo slept generally very well and we felt lucky. Sometimes he would wake in the early hours but we found that this was probably because his room was getting quite cold and so we put a heater in his room over the winter that came on around 4am. This seemed to improve the situation and Theo would sleep until at least 6am.

Around the age of two, Theo started to wake in the night. I found this confusing as he was able to self settle to sleep and so I didn’t feel there was an obvious reason why he wouldn’t be able to re settle himself during the night. I did however feel that Theo was going through some developmental changes. His language was coming on and he was starting to potty train. He was also very clingy when I dropped him to nursery (normally he couldn’t have cared less when I left him)

For the first few night wakes, it was such a shock to the system that we just bought Theo into our bed as most people do (even though I’m a sleep practitioner, I’m still human and the need for sleep took precedent).

For some people co sleeping works well, but for us it did not as Theo tended to fidget all night and somehow take up nearly an entire double bed and so we needed a new plan.

Initially I used a chair bed (a fold out foam bed) and would lay on the floor next to his cot and sometimes hold his hand.

After doing this for a few days, I decided I was being too soft and wanted to move things along, so I moved onto a single bed that was in his room but was much further away from his cot. I felt pleased about this because he wasn’t coming into our bed and I was able to create a bit of distance between him whilst still being in his room.

Fast-forward a couple of months, Theo seems more settled in himself and goes to nursery happily again. Some nights he wakes in the night and we will leave him to self-settle back to sleep and some nights we know that he probably needs the comfort of having us nearby and so we still go into his room and sleep on the single bed. This is not ideal but it works for us in our real life. Theo continues to self-settle at bedtime and so I’m confident his good sleep habits will return.

However – I know we have a whole new battle ahead of us when we transfer Theo from a cot to a bed!

You can find out more about our Sleep Service here, or call our freephone helpline on 0800 328 1159.

 

Night Waking and Building a Better Bedtime Routine

James

James

James’ family were struggling with his bedtime routine and night waking. Our Sleep Practitioners, Pattie Everitt explains what sleep and advice she was able to give to help them tackle the problem.

Seven year old James has ASD and had great difficulty settling to sleep. He needed a parent with him until he fell asleep. He also woke in the night, went to his parent’s bed, and would then stay there for the rest of the night.  This would result in his dad moving to sleep on a mattress to be able to get more sleep.  The parents were finding this a great strain, as they did not have an evening together or a good night sleep.

Pattie explained that the waking in the night is something everyone does, normally without realising, but because James settled with a parent at bedtime, he would wake up, notice that they were not there, and then need their assistance to settle again.

The normal approach to this problem would be to reduce the contact gradually, by sitting a bit further away every few nights as the child is falling asleep and keep doing this until the parent is back downstairs.  Pattie advised the family to try this, along with keeping the wake times the same each day so that James would get into a more consistent sleep pattern.  A couple of months later, James’  mum replied with the following:

“Thank you for your response and advice. We have started the process of removing ourselves from James’ room at bedtime and he is now accepting us being out of the room – just outside. I suspect that the next step is to move further away which will then, as you say, reduce the nighttime anxiety, as he will get used to being on his own. We have also been sleeping with him during the night to keep him in his own bed and out of the habit of coming into our room.  We are now thinking about whether we can move out but looking at your advice, we would also have to do this slowly.

Thanks for the advice on consistent bedtimes/wake times. We have managed to get him to bed a bit earlier by creating a more consistent routine but it can still take him a long time to go to sleep. I suspect that might just be the autism and a need to wind down?  If we can get him to stay in his bed this, together with an earlier bedtime, is perhaps not so much of a problem.”

The parents persevered with the technique over the next few weeks, and also introduced one of their own:

“We have recently turned a corner with James’ sleeping with the use of a book on CD at bedtime.  We listen to the CD with him, following the book, and then we turn the lights out and leave it on repeat at a quiet volume. James has learnt that when the CD is on, it is time for bed and that he should stay there. Although he still takes a while to settle to sleep, with the help of the CD, he is staying in his room.  We leave the CD on very quietly through the night and he now stays in his bed.  This is a dramatic turn-around and I think this strategy has worked because it provides a clear structure/cue about what James should be doing, and the CD helps his anxiety about being on his own/going to sleep.”

According to Pattie, using sound such as a CD to help with sleep can be beneficial, but if used for settling at bedtime it is often best to keep it at a low level all night as James’ family did so that he is exposed to the same environment when he wakes in the night.  This can help the child fall asleep again on their own.

James’s mum was grateful for the support through the process:

“There is so little help out there for sleeping difficulties so your service is so valuable!“

You can find out more information about our Sleep Service here.

Sleep Seminar Gives Advice on Aromatherapy, Mindfulness and Massage

We recently held a Sleep Seminar in Leeds at the Mencap Centre. The theme of the day was supporting sleep through mindfulness, aromatherapy and massage.

Alongside a presentation from our own Sleep Practitioners was Lois Skilleter, from Earthereal of Yorkshire therapies. Lois gave a great presentation on each topic and everyone eagerly took part in the practical demonstrations of either hand massage or head, neck and shoulders in the afternoon, with the support of Lisa and Amanda, Lois’ students. This provided a wonderful relaxing and enjoyable end to the day for parents and professionals, whilst a special mention must be made to our Sleep Practitioner,  Laura MacDonald  who selflessly put herself forward to be Lois’ demonstration model!

We also had Phil Truby from Yorkshire Sport Foundation talking about how they support children and adults who have disabilities to access sport and activities, as well as the positive impact that has not only on their fitness but on improving their social networks and emotional wellbeing.

We had so many positive comments about the day, here are just a few:

‘After 10 years of living with a child with a sleep disorder, I feel that despite thinking we had tried everything, we learned new techniques.’

‘I suffer from ticks and verbal shouting and was terrible on the journey to the seminar. I soon calmed down with the welcoming environment, lovely staff and relaxation exercises. Even my husband, who initially thought it was nonsense, benefitted from the mindfulness exercises.’

‘It has given me the confidence to go and try these things at home.’

‘Lots of ideas that a frazzled, sleep deprived mum would not consider.’

‘Having been shown how to massage, this will be very useful. I will definitely be doing this with my son.’

We were very grateful to have the event sponsored by Irwin Mitchell, who also very kindly provided the lunch, which was absolutely fantastic and much appreciated by everyone who came.

A huge thank you also to the staff at the venue who went out of their way to help us and everyone who contributed to make the day such a success. There are definitely a few children who will benefit from receiving their parent’s new found skills!

You can download handouts from the day below:

Aromatheraphy and Massage Handout Mindfulness Handout

Better Bedtime Routine

Our Sleep Practitioners provide support for families on a range of sleep issues. One of our Sleep Practitioners, Sarah Coldrey was recently able to Oscar settle into a regular bedtime routine. His mum explained how this has helped.

“I’ve just put Oscar to bed. It’s 9.15pm and I’m now sat downstairs enjoying peace and quiet while he settles… In his own bed, in his own bedroom, upstairs alone.

He may wake up once during the night. If he does, I will return him to his bed and he will go back off to sleep, usually within 10 minutes… no great fuss.

Nowadays, more often than not he does not wake during the night.

He will wake at around 6am and sometimes climbs into our bed for a cuddle before dozing for another hour. Some mornings he is awake a little earlier, at around 5am, but again dozes until it is time to get up. And on rare mornings he wakes up at about 6am and he doesn’t need to doze, so we get up.

But gone are the 4.30am-5.30am regular starts to our day.

Also gone are the two hours spent settling him every night, with one of us having to stay in his bedroom until he finally fell asleep at gone 10pm.

Gone, too, are the night wakings, often up to three or four times between going to sleep at around 10.15pm and starting the following day at 5am.

What we have now is something that, just a few months ago, was unimaginable.

Last August, Oscar was nine years old, a month away from his ASC diagnosis and had never slept the night through. He had always needed us with him to settle. He had always woken throughout the night. And very often he was awake for the day before sunrise.

And then we embarked on a Cerebra sleep programme with the lovely Sarah Coldrey, who visited us and gave sound advice about Oscar’s bedtime routine (we had a routine in place so we just needed to tweak it!), a plan to follow for settling and managing night wakings and, most importantly, the inspiration for us to succeed.

Sarah explained how what seemed like the unachievable was, in fact, quite achievable – slowly.

All we had to do was follow the plan. We were in it for the long haul, not expecting this to be a quick fix. But, just three months after starting the sleep programme, we were seeing results.

Our gradual withdrawal from Oscar’s bedroom as he settled turned out to be easier than we had ever thought possible. We’d previously attempted something similar but had given up because we had, in hindsight, expected progress to be much quicker.

This time we took baby steps – and they worked.

Oscar is now functioning much better during the day. He says he is ‘not as grumpy’ – positive proof that a good night’s sleep is good for everyone!

Thanks Cerebra, thanks Sarah!”

If you’d like some help from our Sleep Service you can find out more here.

Cerebra Sleep Conference – Tackling Sleep Disturbances in Children with a Learning Disability

On Wednesday 28th June 2017 we held a one day conference on sleep disturbances in children with brain conditions to share developments in sleep research and look at how this new information will affect parents, carers and professionals.

The conference was full of useful information and a great chance for people to meet and discuss ideas. You can find out more about the talks below and download some of the presentations.

Session 1: Understanding Sleep

An Introduction to Sleep

Dr Andy Bagshaw who is a Reader in Imaging Neuroscience at the University of Birmingham gave a fascinating talk on what sleep is and why it so important.

Download the presentation as a PDF

Sleep and breathing in children with neurodevelopmental disorders

Dr Cathy Hill is an Associate Professor in Child Health at the University of Southampton and Honorary Consultant in Sleep Medicine at Southampton Children’s Hospital where she has built up a multi-disciplinary children’s sleep disorder service. Cathy’s talk gave an overview of the effect breathing difficulties during sleep can have on brain function and development, including data from her research in children with severe motor disorders and Down syndrome.

Session 2: Family and Support

The bedtime story of sleep deprivation

Leeann Stevenson is the mother of three children, including Lily who is 10 and has Smith-Magenis Syndrome (SMS), a condition that commonly features disrupted sleep patterns. Leeann’s talk was about the impact having a child with sleep disturbances has on family life.

Download the presentation as a PDF

Cerebra’s Sleep Services

Claire Varey, one of Cerebra’s Sleep Practitioner gave a presentation on the work of our Sleep Service and how it can help families with children who have difficulty sleeping.

Download the presentation as a PDF

Session 3: Current Sleep Research

Sleep, challenging behaviour and pain in neurodevelopmental disorders

Dr Caroline Richards who is leading Cerebra funded research at the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham gave a talk on the links between pain, challenging behaviour and sleep in children with neurodevelopmental disorders.

Download the presentation as a PDF

Sleep and cognition in neurodevelopmental disorders

Dr Anna Joyce is a Research Associate in Psychology at Coventry University. Anna’s talk described various sleep problems experienced by children with neurodevelopmental disorders and how sleep affects children’s cognition, illustrated with some of Anna’s recent work.

Active research at the Cerebra Centre

Georgie Agar is a PhD student at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmgham. Georgie’s talk was all about the research being done at the Centre.

Download the presentation as a PDF


The conference also launched our new Sleep guide that the our Sleep Team, together with the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham, have developed to assist parents to manage their child’s sleep disturbance.

All of our information resources are covered by The Information Standard, a recognised quality mark which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written.

Sleep Walking to Success

The walkers before they set of

The walkers before they set off

On Saturday 6th May we held our second walk to the top of Pen-y-Fan in the Brecon Beacons to raise vital funds for our Sleep Service.

Following a safety briefing from the fabulous mountain rescue team, our brave walkers grabbed a glow stick each and, with an overwhelming sense of camaraderie, made their way to the summit!

This year, we were also joined by the Côr CF1 choir who not only braved the walk to the top of Pen-y-Fan but then entertained everyone with a few songs at the top. They were in fine voice, even after the trek up the mountain!

So far, this year’s Sleep Walk has raised well over £3000 and this will help fund our Sleep Service which aims to help families with children with brain conditions get a good night’s sleep.

We would like to say a big thank you to everyone who took part in the walk and for joining us on our journey to help families discover a better life together.

An End to Sleepless Nights

Our Sleep Service gives support to families when their child is having sleep difficulties. Sleep Practitioner Catherine Stone recently helped a family experiencing sleepless nights and mum told us  how Catherine’s support had helped them.

“Thanks for helping us to get our 5 year old son back into a good sleeping pattern.

M has Tuberous Sclerosis with Epilepsy and Autism. He was always a great sleeper until his epilepsy medication stopped him sleeping. He began waking several times at night and wouldn’t go to bed. Catherine gave us advice and support and kept in touch until we had him sleeping peacefully again. Then we moved house and M began having the same problems again!

Catherine came to see us again with more advice and support and M is now thankfully sleeping well again from 8pm to 7am. What was helpful along with the advice and support was Catherine’s belief that our child could sleep well, that we didn’t have to accept the sleepless nights. Many parents think it is hopeless and accept it. But I can handle the challenging behaviour so much better if I’ve slept well and M needs to sleep too, his behaviour is better if he is well rested”.

Catherine explains “M’s difficulty settling and night waking was having a big impact on mum and dad and on family life. M’s problems re-occurred when the family moved house so we looked at trying to get M’s bedroom similar to his old one. We also developed a routine to gradually remove mum and dad out of the bedroom.”

If you would like some help from our Sleep Service you can find out more here.