Tag Archives: Sleep

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 janetp@cerebra.org.uk or 01267 244203.

How much have you learned about sleep?

Take our true or false quiz to find out.

Question #1: 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.

Question #2: 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.

Question #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.

Question #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.

Question #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.

Question #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.

Question #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.

Question #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.

Question #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.

Question #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.

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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.

What impact do sleep problems have?

Although the odd night of poor sleep may not affect daily abilities, persistent sleep problems can have a huge impact on individuals with and without intellectual disability and their friends, families, colleagues and carers. For all individuals, lack of sleep is associated with problems with mood, learning, memory and behaviour.

This article is taken from our Sleep Guide which you can download for free on our website.

Learning

Importantly, poor sleep affects motivation and concentration, which means that individuals who are experiencing sleep problems may make more errors at school/work, particularly on repetitive tasks. This means that if your child is struggling on ‘easier’ tasks at school (which are often repeated until they are ready to move on to harder tasks) it is worth speaking to their teacher, who may be under the impression that they are struggling because of their intellectual disability, rather than the sleep issues.

Sleep is also vital to a process called memory consolidation, where memories from the day (e.g. memory of that is learned at school) are strengthened. If sleep is disrupted these memories may not be stored properly, making it harder for children to use what they have already learned during the next day at school.

Challenging behaviour

Poor sleep may also reduce an individual’s ability to cope with changes in their routine. You may notice that your child shows more challenging behaviour (for example, self-injury, aggression, destruction) when they have not slept well the night before. This is common in children with intellectual disability and also in children and adults of typical development! We are all more irritable when we have not slept well and are therefore more likely to show behaviours which indicate that we would like certain tasks to end or situations to change.

Since individuals with intellectual disability may have limited ways to communicate their feelings and preferences, challenging behaviour can be a very effective way of indicating needs or desires (for example for a task to be taken away). It is natural for parents/carers/teachers to want to respond quickly to the challenging behaviour, which means that it is more likely to occur again the next time they want a task to be removed. For more information on mutual reinforcement of challenging behaviour, see “Parent response to waking” on page 10 of our Sleep Guide, and also our factsheet on Managing Challenging Behaviour.

Parents of children with intellectual disability therefore have a lot to do: comforting children with sleeping problems, acting as an advocate for their child’s learning and health, and managing challenging behaviour. Often parents and family members experience a loss of sleep themselves, which can make managing these aspects of parenting more difficult and may even contribute to low mood and impaired concentration.

It may feel as though your child’s sleep problem is out of your control or that you do not have he time/resources to invest in fixing it. However, after thorough assessment, there are some simple intervention strategies available in Part Three of the guide which can help to improve sleep.

You can download our Sleep Guide and our new tips and techniques booklet free of charge from our website. If you’d like some individual advice on tackling your child’s sleep issues please get in touch with our Sleep Team.

My child just won’t go to sleep

Small girl waking her parents early in the morning.This article takes a look at what you can do if your child just won’t go to sleep. It’s taken from our Sleep Guide which is available to download for free.

What should I do when my child just will not go to sleep?

Often settling problems can be caused by a lack of bedtime routine or perhaps the bedroom being associated with activities other than sleep. However, even after establishing a calming bedtime routine, it may be that your child does not want to go to sleep and cries out to you. This may be distressing for you as a parent to hear and your natural reaction may be to go back into your child’s bedroom.

As described in Part One of the Sleep Guide, this may be contributing to the problem, and so the next step for intervention would be to stop reinforcing the settling problem. This may require ‘ignoring’ your child’s cries, which is known as extinction. However, this can be very difficult for parents and children, so graduated extinction is recommended.

Agree a set amount of time (e.g. 2 minutes) that you will allow your child to cry for, before briefly checking on them.

  1. When your child has been crying for the 2 minutes, go in and check them. This checking should only be to reassure yourself that the child is alright and to tell them to go back to bed. When you check on them, do not offer physical interaction, music, or any other aspect of the bedtime routine.
  2. Leave the room and wait the agreed time before repeating the checking procedure.
  3. You may have to repeat this many times before your child eventually falls asleep, so it’s a good idea to start on Friday night or another evening where no one has school or work the next day.
  4. The next night, gradually increase the amount of time you allow before checking on your child (e.g. from 2 minutes to 4 minutes), and continue to keep the checking procedure brief.
  5. Repeat this until the child’s crying at settling reduces.

If the suggested times here are too long, try just waiting for one minute before checking and then gradually increase the time by 30 seconds each night. Eventually your child will learn to settle themselves to sleep without you there

If you’d like some individual advice on introducing this technique please get in touch with our Sleep Team. 

Handy tips for summer holiday sleep

tips for sleeping during the summer holidays

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.

We hope these tips have helped but if you need more personal support our team would be happy to help. Visit our sleep pages for more information.

Epilepsy and getting a better night’s sleep

Jonah and Louise

Louise recently contacted our Sleep Service for some advice to help 9-year-old Jonah get a good night’s sleep. Jonah has recently been diagnosed with frontal lobe epilepsy and Louise told us their story.

Jonah has never been a great sleeper and not having a good night’s sleep just became a normal part of life for our family.

For a while we were trying to push him to sleep in his own room but then we starting noticing that something wasn’t quite right. He was making strange, rhythmic movements in his sleep.

We saw Jonah’s GP who told us to keep an eye on it but it steadily got worse. He would be waking up 3-5 times a night and this eventually developed into dystonic posturing – his right arm would go in the air and his leg would go stiff.

We started filming Jonah at night so that we could show the GP that his condition was worsening and of course, having so many seizures every night meant that none of us were getting much sleep. It was taking a toll on all of us and I began to feel extremely guilty about having tried to make him sleep in his own room when he’d been having seizures all along.

By February 2018, Jonah had been referred to an epilepsy specialist and we finally had enough evidence to show that Jonah was getting worse and they were able to diagnose him from this. They put Jonah on medication to help manage his seizures and he responded straight away which was great but it made him very tired in the day. This wasn’t helped by the fact that he still wasn’t settling well and he still didn’t want to be in his own room – part of me still wanted to keep an eye on him in case he had a seizure.

That’s when a friend suggested that we contact Cerebra’s Sleep Service for support. We received our sleep pack and immediately started using some of the tips that were in there.

Self-settling was the most important thing for us to get Jonah into the habit of doing because it meant that we wouldn’t have to intervene if he did wake in the night – he would just settle himself. We used the gradual withdrawal method to so that it was a gentler process for both us and Jonah and if he woke up during the night, we would just take him straight back to his room.

I first noticed an improvement about two and a half weeks in when Jonah got up in the middle of the night to use the bathroom and took himself straight back to bed. We were thrilled!

We’re now six months down the line and the change in not just Jonah but the whole family is unbelievable. I had been finding it more and more difficult to function in work because of the lack of sleep but now I’m doing much better and Jonah is also doing much better at school because he is now able to concentrate much better. We’re even moving him into his own big bedroom.

The Cerebra Sleep Service has been great because a lot of the sleep advice you usually find is for much younger children, but their advice really helped not just Jonah but the whole family finally get a good night’s sleep!

You can find out more about our Sleep Service and the support we offer here.

Overcoming sleep terrors

In this article we take a look at what sleep terrors are, give advice on how to overcome them and explain how our Sleep Service helped Rachel and her mum.

Like any other ten year old, Rachel was desperate to have a sleep over at her friend’s house. However, Rachel has autism and the anxiety she experiences meant that she felt unable to sleep without her mum in the bed with her. She had never managed a full night in bed by herself.

Her mum, Helen, was also concerned about Rachel’s screaming episodes during the night when Rachel would run around the house, appearing terrified and screaming, but unaware of her surroundings. Her GP explained to Helen that these were sleep terrors (sometimes called night terrors) and were likely to be just a stage that Rachel was going through.

Rachel’s sleep terrors sometimes happened twice during the night and Helen was worried about Rachel’s quality of sleep as well as the disruption caused to the whole family. Needing advice and support Helen contacted Cerebra’s Sleep Service.

One of our Sleep Practitioners, Pattie, gave Helen some information and advice on sleep terrors.

If your child is experiencing sleep terrors, it is important to seek medical advice to confirm the diagnosis and to rule out any other causes for the behaviour.

What are sleep terrors?

Sleep terrors are episodes that can that occur when a person is in a deep stage of sleep – usually within the first few hours of going to sleep. NHS guidance says that they most commonly occur between the ages of 3 and 8, but that a child’s developmental age may also need to be taken into account. When experiencing a night terror a child may:

  • Appear frightened
  • Scream
  • Cry
  • Thrash around
  • Appear confused
  • Not respond to the parent / carer or push them away

It’s important to be aware that although the child may seem agitated, they are likely to be unaware of this event and probably won’t have any memory of it in the morning. It’s more distressing for the person who witnesses it. Episodes usually last less than 15 minutes but in younger children, or in those with developmental delay, they may last quite a bit longer.

Some things that may make sleep terrors worse:

  • Changes in sleep patterns
  • Infections/ fever
  • Anxiety/ stress
  • Inadequate sleep
  • Medications that causes certain changes in sleep
  • Caffeine
  • Sleeping with a full bladder
  • Noise and light
  • Sleeping in a different environment
  • Sleep-disordered breathing
  • They may occur more frequently in certain conditions, for example Tourette Syndrome
  • Family history of night terrors or sleepwalking

Suggestions which can help you to manage sleep terrors:

  • Keep bed and wake times consistent
  •  Sleep deprivation can make it worse, so ensure that other sleep problems are managed where possible
  •  Ensure your child is in a safe environment
  •  Inform other caregivers e.g. if your child attends respite or sleepovers etc
  •  Avoid stimulants e.g. caffeine
  •  Avoid waking your child up during an episode as this can prolong a night terror or cause agitation
    If your child leaves the bed then gently guide them back to bed
  • Avoid comforting or other interference as this can also prolong the episode
  • Avoid discussing it with your child the next day as this may cause anxiety, and possibly more disturbed sleep
  • If the episodes happen at a predicated time each night, you could try scheduled waking. This is where you wake the child up 15 minutes before the episode occurs for a few nights (or more in some cases) and then let them go back to sleep and this can often break the cycle.

How did Helen and Rachel get on?

Since Rachel and her mum were also keen for Rachel to be more independent at night-time, Pattie also advised them on how to implement gradual withdrawal. This is a method which involves gradually increasing the distance between parent and child over a period of time. In this case, Helen used a camp bed and set this up in Rachel’s room. Every few days Helen moved this gradually a bit further away from Rachel’s bed until she was out of the room.

She also worked hard to ensure Rachel was calm at bedtime with a relaxing routine as well as keeping the wake times consistent each day (including weekends). You might find some tips in our Anxiety Guide useful.

After two months, Rachel’s sleep terrors had reduced considerably, and Helen got in touch to say how pleased she was that Rachel had managed to sleep over at her friend’s house for the night. Rachel also called Pattie first thing the following morning, as she had been so happy that she had managed to do it!

If you’d like some advice on managing sleep terrors, or other sleep issues, don’t hesitate to get in touch with us.