Tag Archives: Sleep

Building a better bed time routine

Avleen

Recently we were contacted by Hardeep, whose daughter Avleen was not sleeping at all. This was having a huge impact on the whole family. Claire from our Sleep Service offered the family some guidance and now, just a few months later, Hardeep tells us about their journey.

My daughter Avleen was born prematurely at 28 weeks but is now five years-old. She was diagnosed with Autism in 2018 and this often causes sensory issues which can lead to meltdowns.

She had disturbed sleep until she was 3 years-old and then things started to get much worse. She wouldn’t nap at all through the day and even though she was exhausted, she would wake up through the night – sometimes hourly.

It inevitably started to affect her school work because she was so tired during the day that she couldn’t concentrate and would act out.

Things came to a head when I was pregnant and had my second child. Avleen was waking up through the night and wasn’t able to settle herself. Once her sister Harneez was born, the crying of the baby in the night would also affect Avleen. It was taking a huge toll on the whole family.

We saw a paediatrician who suggested that we try melatonin but I was hesitant to try this as a first step. They also suggested that we get in touch with the sleep team at Cerebra for some advice and support.

We were put in touch with Claire who listened to what was going on and asked lots of questions to help her to understand our situation. We worked together to put a plan in place to improve Avleen’s sleep.

Claire suggested that we avoid giving Avleen a bottle before bed but rather give her a small snack if she was hungry. We were also advised to switch screens off at 7 to allow her to start winding down before sleep.

We started to give her a bath as part of her evening routine and this allowed Avleen to start to recognise for herself when it was nearly bed time.

Claire was in frequent contact during this time and for every issue that we had surrounding sleep, she was looking for a reason why it would be happening so that we could adjust Avleen’s routine accordingly.

After completing every step of the routine, we were finally able to bring Avleen’s bedtime forward to 9pm. She started to go to bed much more relaxed and as a result, was finally able to sleep through the night without any episodes of waking.

Once her sleep started to improve we even realised that part of the problem previously had been that she had been extremely restless in her sleep and her hair was getting tangled. This was causing her sensory issues and was leading to meltdowns.

Before we worked with Claire, Avleen was anxious about everything, especially at night. Now her behaviour is much better because she is much more well rested. She even recognises when it is time to go to bed and asks to go to bed herself – something that would have never happened before.

The only time that she wakes during the night now is if she has a cold or is suffering with hay fever. This obviously disturbs her sleep but is understandable.

She will sleep for 10 hours now which is amazing and it has had a hugely positive effect on her behaviour.

She is now able to concentrate much more at school and we have noticed that her asthma is much more under control.

It’s not just had a positive effect on Avleen but has also made things better for the entire family. I have gained so much confidence with the help of Claire and now I know that I’m not going to have any issues getting her to sleep. We’re all far more rested and this has meant that we are able to cope with everyday life much more easily.

If you would like to find out more about our Sleep Service, including how you can get help from one of our Sleep Practitioners, check out our website.

Handy tips for summer holiday sleep

older boy asleep

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

You can find more information in our sleep resources. If you would like to find out more about our Sleep Service and how you can get more help and advice with your child’s sleep, please visit our website.

Meet our new Sleep Practitioners

We’re thrilled to introduce you to the two newest members of our sleep team, Carwyn Tywyn and Claire Cox.

Carwyn

Hi, my name is Carwyn and I was delighted to begin 2019 in my new role as Sleep Practitioner at Cerebra.

My early career background was in current affairs, both as an academic and a journalist. I was awarded a PhD in Welsh Politics at Cardiff University. After a brief period as a research assistant and academic tutor, I became Political Correspondent for GOLWG, the Welsh language weekly current affairs magazine. In this role, I was based full-time at the National Assembly for Wales during 2006-07.

It was while working at the National Assembly that I became more informed about and interested in the work of the voluntary sector in Wales. Since 2008 I have worked in research and senior development roles for a number of organisations, including the Disability Law Service, Home Start UK and Mencap Cymru.

My role prior to joining Cerebra was as a Regional Caseworker for the Mencap Cymru “WISE” project, which, in partnership with Cardiff Law School, provided advice and support in relation to learning disabilities. In 2018 the project was awarded the LawWorks award for “Most Effective Pro Bono Partnership”. Whilst at Mencap, I also received training in specialist approaches such as Mental Health First Aid, which has had a major influence on my outlook.

I have two children, Heledd (11) and Gwyn (6). I think it is the combination of being both a parent and frontline disability caseworker, which has attracted me to the role of Sleep Practitioner. I feel very lucky to have the chance to apply and give back some of my knowledge and experience to children and parents who may be struggling in all kinds of life circumstances.

In another life, I am a professional harpist, and was winner of the folk harp competition at the National Eisteddfod in 2013. Along with my daughter, I am a keen supporter of AFC Wimbledon. We saw them win at Wembley in 2016!

I look forward with anticipation to my new career at Cerebra. Diolch yn fawr.

Claire

Hello!

I’m Claire. I am super excited to be part of the sleep team. I can’t wait to start helping families with their children’s sleep issues and empowering them to make the changes they need.

After volunteering with many charities over the years I am so happy to be working for such a wonderful one!

I come to Cerebra from working privately in London as a Prenatal/postnatal/Newborn care specialist, trouble shooter, Nanny and sleep practitioner.

Prior to this I used to be a professional dancer which took me all over the place doing many different things!

I also had my own ballet school.

My partner and I have our own theatrical production company of which we are very proud of!

We are about to leave London to live our dream life in Clovelly, North Devon! 

It’s a big year of change for me and I couldn’t be happier to be working with all of you for such a worthwhile and needed charity!

Find out more about our Sleep Service.

Cerebra to benefit from Co-op Community Fund

Vanessa with Dylan, Ryan and Taran
Vanessa with Dylan, Ryan and Taran

This year we have been chosen to benefit from the Co-op Local Community Fund.

At a time when funds for charitable organisations are becoming more difficult to access, we are incredibly grateful for this opportunity to make real difference.

We are raising funds so that we can continue our work to help families who have a child with a brain condition to discover a better life together. Families who have a child with a brain condition such as autism, cerebral palsy or Down’s Syndrome face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome.

Support from the Co-op Community Fund will help us to carry on supporting families like the Hoopers from Kidwelly. For seven-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered Cerebra.

Ryan has Down’s syndrome and the condition often causes poor or disturbed sleep, something that affected him and had a knock-on effect on the whole family. When his mum, Vanessa, heard a representative from Cerebra speak four years ago at a local Down’s syndrome support group, she was keen to find out more about how the charity could help her son. Helping him to get a better night’s sleep was at the top of her wish-list.

Vanessa says “Cerebra’s sleep service was invaluable to us. Whenever I called they’d answer my questions and reassure me I could cope. The sleep practitioners helped us countless times and were able to get us into a routine, which gave some normality to our daily life”.

To help raise the vital funds, we’ll be relying on Co-op shoppers. Every time they buy Co-op own brand products they get a 5% reward for themselves, and a further 1% goes to local causes like ours. Co-op members can decide which local group they would like to back by going on-line at www.coop.co.uk/membership. We really hope that people will visit the website and choose to support us.

If you’re not a member and would like to support us, you can join at your local store or online at www.coop.co.uk.

When a community comes together we’re able to achieve great things, so we hope you can help promote our project.

Watch Vanessa explain what it’s like to have a child with a brain condition who doesn’t sleep well:

What can I do if my child needs me to be there in order for them to sleep?

For some children, falling asleep without an adult with them seems impossible. Perhaps your child is used to you sleeping in bed with them, or on a chair in the corner of their room. Although your presence may help them settle to sleep initially, if these same conditions are not in place when they wake up in the middle of the night, they may struggle to settle themselves back to sleep.

In order to help your child learn to fall back to sleep by themselves, you could try gradual withdrawal. If, for example, you usually sleep in the same bed as your child, try sleeping on the floor next to them. After three nights, move slightly further away. After three more nights, you could sleep on a chair next to the bed. Then try moving to the corner, then outside the room.

If your child cries and tries to get you to come into bed with them be firm. Avoid conversation and eye contact if possible. This may be very difficult at first but eventually your child will learn to fall asleep without you there.

This advice is taken from our detailed Sleep Guide. Several techniques are also explained our new Sleep Tips booklet.

If you’d like some individual advice just fill out our Sleep Referral Form and a member of our Sleep Team will be in touch.

Get a good night’s sleep with help from our library

Join our librarian Jan (and teddy) as she talks through the different books and sensory equipment we have in our library that could help your child to sleep.

Books on sleep

  • L1676 – Treating Sleep Disorders: principle and practice of behaviour sleep medicine by M L Perlis
  • L6107 – The New Baby and Toddler Sleep Programme by John Pearce
  • L6315 & L6531 – Solving Children’s Sleep Problems: a step by step guide for parents by Lyn Quine
  • L6324 – Teach Your Child to Sleep: solving sleep problems from newborn through childhood by Millpond Children’s Sleep Clinic
  • L6325 – Sleep Disturbances in Children and Adolescents with Disorders of Development: its significance and management by Gregory Stores
  • L6367 – A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems by Jodi A Mindell
  • L6392 – Sleep Difficulties and the Autism Spectrum Disorder by Kenneth Aitken
  • L6605 & L6606 – Sleep Better: a guide to improving sleep for children with special needs by Mark Durrant
  • L6694 – The Gentle Sleep Book: a guide for calm babies toddlers and pre-schoolers by Sarah Ockwell- Smith
  • L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children by Gillian Cowdell
  • L6740 – Why We Sleep? The new science of sleep and dreams by Matthew Walker

Relaxing sensory toys

Fibre optics

The most widely accessible of all the sensory equipment. Consists of a light box and 100 two metre fibre optic strands. Features LED lights and plastic ‘sparkle’ effect strands with an automatic colour change cycle. Safe to
handle for children of all ages. Ideal for holding the child’s attention and good for those with sensory avoidance.

Mood egg

New in the library, this robust plastic egg is 42cm high and can be used indoors or outdoors. It is operated using a remote control. You can choose individual colours or a colour changing cycle. It comes with a recharging
station, each charge of 6 hours provides 8 hours of light

NB includes a flashing mode not suitable for those with photosensitive epilepsy.

Relaxation Sensory Kit

Contains all you need to create a calming environment. Includes weighted dolphin neck wrap, microwave heatable animal, aromatherapy diffuser with lavender oil, kid’s relaxation CDs, sand timer and other calming
tactile items.

Sensory in a Suitcase

Our most popular item. The suitcase contains a wealth of sensory equipment to relax and stimulate. Can be used for therapy, education and play activities. Contents include: fibre optic lights; UV torch and UV reactive items; Space Projector; aromatherapy diffuser and oils; mood pod projector with coloured lights;
natural sounds CDs and a variety of sound and tactile items. Most, but not all, also have a pin spot lamp and mirror ball.

To borrow any of these books or sensory toys contact Jan on [email protected] or 01267 244203.

How much have you learned about sleep?

Take our true or false quiz to find out.

Results

Well done! Why not share your result on social media and challenge your friends to do better?

Bad luck this time. Why not check out our new sleep tips booklet and then try again?

#1 We all wake up multiple times during the night

True. As part of our natural sleep cycles we all wake partially multiple times throughout the night but most of us fall straight back to sleep and have little memory of waking the next day.

next

#2 A cup of a tea and some chocolate biscuits are a good bedtime snack

False. Both tea and chocolate contain caffeine, which can make it difficult to fall asleep.

next

#3 Hide and seek is a great game to include in your child’s bedtime routine

False. You should include quiet, calming activities in your child’s bedtime routine. Things like colouring, play-doh or puzzles are good options.

next

#4 A visual chart can help support a bedtime routine

True. Many children are visual learners so a picture schedule can help them process the information.

next

#5 You should avoid playing music at bedtime

False. If your child finds music relaxing it’s fine to play music at bedtime. We’d recommend that it’s either kept on – quietly – all night or your child knows how to turn it on themselves if they wake up in the night and need the music to get back to sleep.

next

#6 Using phones and tablets close to bedtime can disrupt your sleep

True. Phones and tablets (and TVs) give out blue light which prohibits our natural melatonin production. Melatonin is the hormone that makes us feel sleepy.

next

#7 It’s best if you’re in the room when your child falls asleep

False. If your child falls asleep with you in the room they’ll find it harder to go back to sleep if they wake in the night and you’re not there. This is called a sleep association. Our new sleep tips booklet has more information on this and lots of other tips and techniques.

next

#8 A teddy can be used as a substitute for a parent

True. A blanket, teddy or item of your clothing can be used as a comforting object to substitute you when your child is falling asleep or if they wake up in the night. There’s more information on this and other techniques in our new sleep tips booklet.

next

#9 It’s okay to let your child into your bed if they wake up early on weekends as long as they stay in bed on weekdays

False. This is called intermittent reinforcement and it’s actually the most powerful type of reinforcement there is. Letting your child get into bed with you sometimes and not others can encourage your child to ‘try their luck’ most or every night. Consistency is key – whatever you feel is manageable.

next

#10 Avoid bright light in the morning

False. Bright light exposure (using something like a SAD lamp or a daylight bulb) in the morning can set our 24 hour sleep/wake cycle, helping with problems settling at night and waking up in the morning.

finish

Sleep – tips and techniques

We are launching a new resource to help families who have a child with a brain condition to get a good night’s sleep. Sleep – tips and techniques for families who have a child with a brain condition explains techniques to help with the ten most common sleep problems including refusing to go to bed; not wanting to sleep alone, waking up during the night, waking up early.

We all 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.

Our Sleep Service helps families to get a better night’s sleep through one-to-one support, sleep workshops and sleep information resources.

The new booklet, Sleep – tips and techniques introduces and explains several different techniques that may help a child’s sleep and gives lots of illustrated hints and tips for putting them into practice. It includes 10 topics:

  • Bedtime routine
  • Calming time before sleep
  • A good sleep environment
  • Positive sleep associations
  • Using a comforting object
  • Gradual withdrawal from the bedroom
  • Moving bedtime backwards
  • Moving bedtime forwards
  • Creating a rewards system
  • Reducing daytime naps

Download booklet (PDF)

The information in the booklet is based on research at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham. Through the Sleep Project they are leading 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.

The Sleep Tips guide can be downloaded free of charge. You can also access one-to-one support, find out about sleep workshops as well as download our comprehensive Sleep Guide.

We’ve planned a week of activity on social media around the launch of the new Sleep Tips booklet. Cerebra Sleep Week runs from 17th – 23rd September and will include lots of advice and support for families who may be struggling with lack of sleep. #Cerebrasleepweek.

Difficulty settling at night

A young girl lying in bed awakeOne of our Sleep Practitioners recently helped a family who were struggling to get their daughter to bed, and to sleep.

Sleep Practitioner Laura explained: “Charlotte is ten years old and has ASD. Her main issues were settling at bedtime and sleeping alone. She was taken to bed at 9:30 but this could cause huge issues and arguments, or endless delaying tactics and bedtime was stressful overall stressful.

We agreed to focus initially on introducing a calming bedtime routine and suggested implementing a temporary later bedtime. Mum began taking her to bed at the time she was naturally falling asleep with the aim of very gradually moving this backwards by 15 minutes.

This, in combination with a calming bedtime routine (we chose a massage, red light and filtered glasses to watch TV with) meant Charlotte was going to bed in a much better mood, and falling asleep without any arguments or delaying tactics.

Charlotte’s mum Judith explains how they got on:

“I found Cerebra’s Sleep Service invaluable as the advice given was tailored specifically for Charlotte’s needs, taking into account her preferences. Prior to using your service, I felt that I had explored all options and nothing worked. She was very anxious and confrontational at night and would avoid going to bed at all costs.  However, with your suggestion of removing the stressors (wash, teeth etc) outside of the one hour prior to bed and using visual cues, she is much calmer. I have a board upstairs detailing what she needs to do to the point of going to bed and the time she needs to be in her own bed.

I was concerned as she loves to watch a DVD prior to bed and I was aware that blue light was an issue with sleep. However, you reassured me that if this was what worked for her, we could work around that. On your suggestion, I purchased red filtered glasses and she wears these with pride. I also purchased red night-lights as the ones I was using had a blue light.

When you examined her sleep pattern, it was established that a natural time for her to fall asleep was 10.30pm -11.00pm, so you recommended she wind down for one hour prior to 10.45 and then watch her DVD with her filtered glasses on. We did this for a month then successfully reduced bedtime by 15 minutes for a further month. I have just reduced this again by 15 minutes and she is accepting this without question, going to bed without arguing and not delaying going to sleep by trying to play games. She is waking up in a better mood and this is helping with her self care routine.

You also suggested as she was experiencing pain in her legs that this could impact on her sleep. The GP/nurse had always put this down to growing pains. However, you gave me the confidence to question this and my podiatrist diagnosed her with hypermobility which is now being treated with physio and she has orthotics fitted. She also has daily massages. This is reducing the pain.

Once she is taken to bed, I still need to stay with her until she is asleep. In general, she falls asleep within 20-25 minutes and I am then able to leave her. Once I have a bedtime routine in place where she goes to bed at 10pm, I will work on supporting her to self soothe so she can fall asleep unaided. You kindly offered to support me at that time as this is a stressor for her and causes anxiety, as she is afraid of being alone.

I am very grateful of your help as your suggestions were not ‘the norm’ offered by other professionals I have worked with who do tend to focus on ‘bath, book, bed’, which just didn’t work for us. Charlotte’s overall well-being has improved significantly because of your help and we have a much calmer, happier household. Without your support, I am confident that my daughter’s sleep habits would not have improved. Thank you”.

Download our great new sleep booklet for more tips and techniques to get a good night’s sleep.

Object of comfort helps Poppy sleep

Poppy, Simon, Bella, Gigi and Rachel

Poppy, Simon, Bella, Gigi and Rachel

Mum Rachel contacted our Sleep Service to get some advice about daughter Poppy who was having a number of sleep issues. She told us their story and how Sleep Practitioner Kaileigh was able to help the whole family settle into a better routine.

Poppy is 10 years old and has a condition called Fragile X Syndrome. This affects her in many ways in her daily life. She has a learning disability which means that she can’t read or write and has low muscle tone. She also has autistic like behaviour which means that she likes routine. She’s also asthmatic. This can all have a big impact on the way she sleeps.

Before her mum contacted our Sleep Service, Poppy would only settle to sleep if one of her parents were there and would always wake up early – around 4.30am. This would cause problems for the whole family as Poppy also shared a room with her sister Gigi.

Poppy’s asthma also often caused her to be sick in the night when she was younger and so her parents felt as though they needed to be near through the night and this had an impact on their sleep.

One of our Sleep Practitioners, Kaileigh, suggested a number of techniques for mum to try to improve the quality of Poppy’s sleep including using a comforting object. For Poppy, this meant introducing cuddly toys which she grew an attachment to and found comforting. She named her four teddies after people she cares about and having these through the night means that she has a reminder of her parents and can now settle herself without having to wake her parents.

Another positive change that the family has made is reducing screen time before bed. The light that our electronic devices gives off can disrupt our natural sleep cycles so reducing screen time and using a red light (red light doesn’t disrupt out sleep cycles in the same way as other light) in Poppy’s bedroom improved her sleep. She is now even able to sleep with only the landing light on – something she would never have been able to do before.

Poppy is now sleeping much better and she and her sister even have their own rooms now so they can be typical girls. Poppy has chosen a unicorn theme for her room!

Mum Rachel said: “thank you for all the help we have received from Cerebra. We haven’t entirely cracked the sleep issue yet but we feel encouraged with your help!”

Read more about using a comforting object and other techniques for getting a good night’s sleep in our new sleep tips booklet.