Tag Archives: Claire Varey

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.

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.

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 Forum Addresses Sensory Difficulties

sleeping-boy-1024x683On the 10th November, Sleep Practitioner Claire Varey held a sleep forum at Burton Street Foundation, Sheffield.

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.

Introducing a calming bed time routine

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 sleep@cerebra.org.uk.

Sleep Practitioner Ends Sleepless Nights for Family

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.

Sleep Practitioner Gives her Top Tips for Sleep

Clare Varey, Cerebra’s Sleep Practitioner for the Yorkshire area, gives her top tips for getting your child to sleep.

“Sleep for some children is just like any other skill that has to be learnt. It can take time and patience and requires repeating many times before it becomes mastered. One aspect that can have a huge impact on sleep is having an effective bed time routine in place. This helps the child understand how to fall asleep and what is expected at bedtime. Once established the routine can help them to feel safe and reassured, reducing time taken to settle and reducing the impact of night waking/early rising.

Here are my top tips for an effective bed time routine:

  • A bedtime routine should not last longer than an hour. Any longer and children won’t be able to link what they are doing with feeling tired and sleepy once they are in their bed
  • Turn off TV/computers/tablets and phones. These devices all emit light into the brain which will be telling the brain it’s still daytime, making it harder for children to ‘wind down’ and feel tired
  • Start with an activity downstairs that will help them to calm down. If you’re stuck for ideas, have a look on the internet
  • Offer a light supper. Foods that contain Tryptophan are good as this makes Melatonin – our hormone that makes us feel sleepy
  • Move to bathroom and offer a bath (only if they can relax, if you find its stimulating bath earlier in the evening) teeth and toilet
  • Into the bedroom – it should be dark. Use a red based night light if children are scared of dark. This can be kept on all night as red light doesn’t stimulate the brain or affect Melatonin production
  • Introduce a smell to bedroom, such as Lavender
  • Put on pyjamas, offer a massage. This releases a hormone called Oxytocin which relaxes you.
  • Read a short, familiar story
  • Try using a low level music such as alpha/delta wave music which can be kept on all night if needed
  • Say goodnight and leave /stay if needed initially
  • By helping all the senses, this can provide your child’s brain with reassurance and understanding of how to fall asleep, avoiding the bedtime battles that many of us experience

I can provide parent presentations, workshops, sleep clinics, telephone support and in some cases I am able to offer home visits to discuss the sleep difficulty”.

Please visit our website for more information about Cerebra’s sleep service and how to get in touch.

Cerebra Sleep Practitioner Helps the Wright Family

sleeping-boy-1024x683Cerebra also has a team of Sleep Practitioners across the UK who offer help and advice on a variety of sleep issues including settling problems, difficulty sleeping alone and early rising.

Claire Varey, our Sleep Practitioner covering Leeds and the north recently helped the Wright family and specifically 12 year-old Tom Wright.

Mum Claire recently shared her family’s story with us:

“After months of constant sickness our 12 year old son Tom underwent neuro-surgery for a Chiari 1 Malformation. Whilst this was successful and the sickness stopped it meant that Tom’s sleep pattern was completely out of sync. His body clock was wanting him to sleep from about 4.00am – 5.00am and throughout the day.

We tried everything we could think of to improve his sleeping pattern, whilst bearing in mind that he had to recover from a major operation. I cannot fully describe how desperate the situation felt. We felt that we needed specialist help but that it did not seem to be available. I rang FISH (Families Information Service Hub) for further advice and they gave me the contact details for Cerebra.

I immediately contacted Claire at Cerebra and explained the situation. Very quickly she suggested that we undertook delaying Tom’s sleep pattern by 3 hours every day, until it came round to a normal bedtime hour. We implemented it straight away – we were that exhausted and desperate. It wasn’t easy, I can vividly remember waking up at 3.00am thinking the house was on fire because Tom was grilling himself some sausages for tea!

One week later, Claire and Diane (Senior – Regional Officer Supervisor) were booked to come and see us and by that time, we had tentatively altered Tom’s sleep pattern to a “normal” time. We have kept in touch, and I know that Claire and Diane are there if we need them but I am delighted to say that Tom is now sleeping normally and we are once again able to enjoy a family life together.

We are all very grateful for the help Claire and Diane gave us through Cerebra. Without doubt they helped transform Tom’s sleep pattern and gave us support, advice and optimism when we needed it most”.

If you would like to find out more about Cerebra’s Sleep Service, please check our website or contact our Sleep Assistant on 01267 244210 or sleep@cerebra.org.uk.