Tag Archives: Sleep

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.

Help with night waking

Mum Tammy was struggling to cope with her daughter’s night waking. Our Sleep Practitioner Claire Varey describes how she gave them some practical advice and support and Tammy explains the impact this has had for her family.

 

“I first had contact with Tammy back in July 2016. Tammy had completed one of our sleep questionnaires and a sleep diary which gave some basic information about her daughter’s sleep habits. I arranged telephone support for Tammy and we discussed the issues that her daughter, Amelia, who was 4 at the time, had with sleep.

Amelia has Autism and likes the things she likes, but it can be very difficult to get her to engage in any activities or interests if she doesn’t want to. There had been some progress, but Tammy was finding it difficult with the late nights, spending a long time settling Amelia and the continued night waking episodes. Amelia was also having day time naps and was quite reliant on her tablet.

We discussed how these things may be impacting on her and agreed some changes to their routine that may help with settling at night – and hopefully over time improve Amelia’s night waking. We identified that having a bath as part of Amelia’s bed time routine may be stimulating her and so I suggested moving it to earlier in the evening. I felt it would also help to introduce some calming activities, supper and massage before bed.

For Amelia’s bedroom we spoke about using the relaxing scent of lavender to help Amelia associate her bed with being calm and sleep. Also the introduction of a red light would help her understand that it was time for sleep and, if she should wake at night, the red light and the scent of lavender, would help her understand that it was still time for sleep.

The other important factor to look at was the day time nap. We spoke about trying to reduce the length and time Amelia slept – this was especially important as Amelia would be starting full time school within the next 6 months.

We keep in touch via text and although progress has been up and down, there has been an overall positive improvement. Amelia is getting more sleep, she has dropped her day time nap, is settling well and has a better quality of sleep. This is also having a positive effect on her mood and concentration”.

Tammy told us the impact the support Claire has given her has had on her and Amelia:

“From my first telephone conversation with Claire I felt hugely positive about the task that lay ahead. The ultimate goal was to gain more sleep for Amelia and ourselves but for now any step no matter how small would make a huge difference.  Understanding the basics of how sleep works was a massive eye opener. It was really interesting and helped answer some questions I didn’t really know I had until Claire explained sleep patterns to me.

At the end of our first phone call I was yawning my head off so knew I was onto something good.

With Claire’s help we managed to identify that a bath actually stimulates Amelia’s body and so has the reverse effect. Claire advised me to do something with Amelia to get rid of excessive energy for 10 minutes; to use lavender in the bath with some in her room, delta wave music and a red light in Amelia’s bedroom. I felt that the light and the music didn’t do very much but the lavender helped a lot. Very quickly I noticed the time it took Amelia to switch off went from between one to two hours to between 5 and 35 minutes.

When we first started our journey Amelia was having naps after school so Claire explained about not letting it go past an hour, which we didn’t always do especially if Amelia wasn’t right in herself. Since actively encouraging less naps Amelia’s body has naturally adjusted and she now has no naps in the day.

Claire is amazing she listens and is genuinely interested. She regularly checks how we are doing and even though we have never met she has been a fairy godmother for us. Claire is happy to go with what worked for us, never stressing that we shouldn’t be in bed with Amelia which we still are and allowing us to set our own goals.

In the past few weeks Amelia has started going to school until the end of the day and is now in bed between 8pm and 10pm. She still stirs in the night but isn’t awake as often as she was before.

Amelia seems to be learning more and I am sure a lot of this is down to her brain not being as tired”.

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

Behavioural interventions for sleep problems in people with an intellectual disability: Do they work?

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.

Download research summary pdf

Sleep Practitioner Helps Nelli

Nelli and Iveta

Nelli and Iveta

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”.

We have a team of sleep practitioners who can offer help and advice on a wide range of sleep issues.

Sleep and Head Banging

Child crying in a cotHead 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.

Find out more about our Sleep Service and contact us for advice.