Tag Archives: Sleep

Sleep Practitioner Helps Family With Sleep Issues

Sleeping boyOur Sleep Practitioner Pattie Everitt tells us how she was able to help a family with their sleep issues.

“Twelve year-old Stephen who has ASD lives with his parents in Birmingham.  His main sleep issue was waking up very early (around 4am) and not being able to go back to sleep.  His parents encouraged him to go to bed and try to sleep and he was very good at staying in his bed but he did not feel tired.  As a result he was very tired by tea time but kept awake by his parents until around 8:30pm/ 9pm, with the hope he would sleep in until a reasonable time.

I spoke to Stephen’s mum Alice on the telephone for thirty minutes to support them in putting some strategies together.  They were advised to try a much earlier bedtime for a temporary basis, by following Stephen’s natural sleep pattern (the time he feels tired and sleepy), and then to then make gradual changes.

They tried a bedtime of 5:30pm to start with and moved this by fifteen minutes each day until they got to 8:30. They found that by moving the bedtime gradually, this resulted in gradually waking up later in the morning, finally reaching 7am.

This was a big achievement for the family, as this programme had being going on for many years.”

You can find 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.

Bristol Sleep Event Answers Parent’s Sleep Issues

Catherine Stone gives a sleep presentation

Catherine Stone gives a sleep presentation

We recently held a sleep advice event for parent/ carers of disabled children in association with Contact a Family in Bristol.

As charities supporting families of children with additional needs we know that it can be much more difficult for children with learning and sensory differences to maintain a healthy sleep routine.  We work to support parents and carers who are often desperate for more information and guidance at what is a very challenging time in their lives.

A total of 28 parents were able to benefit from the workshop event. One of Cerebra’s Sleep Practitioners, Catherine Stone, gave a presentation on taking a step by step approach to understanding what we know about sleep and how to support a better nights sleep for children who have additional needs. A lunch was provided which allowed the group to share their own information and experiences as well as access advice and support from Sarah King from Contact A Family and Kath Fryer, Cerebra’s Regional Officer for Bristol.

Feedback from the event was positive. One parent said: ‘I’m not alone as I met someone with the same condition as my son.’

Another Mum said the day had helped her to feel ‘Nurtured – very welcoming presenters, a lovely lunch and time for me’.

As well as running workshops, Cerebra’s Sleep Advice Service can offer ongoing advice and support to local families experiencing challenges where their child either has a learning or developmental delay, or if they have a neurological disorder.  Catherine Stone works closely with the Specialist Children Centres in Bristol and runs regular advice clinics for parents as part of this valuable service.

Many thanks to SENSE Woodside Family Centre in Kingswood for hosting the day.

You can find more information about our Sleep Service on our website.

Cerebra’s Sleep Service Helps Scott and Natalie

Five year-old Scott who has a rare chromosome disorder and Autism, was having problems with sleeping by himself.  Natalie, Scott’s mum, got in touch with Cerebra’s Sleep Service for some help.

Natalie told us: “My son goes to sleep around 7.30pm. He falls asleep with me sat by his door. He wakes every night around 10.30/11pm. I then go in and get into his bed. Sometimes I can sneak out but usually he will then wake an hour later. He requests to be held and cuddled all night.”

After completing one of our sleep questionnaires to give us an idea of he nature of the problem, one of Cerebra’s Sleep Practitioners, Pattie Everitt visited the family at home. Pattie was able to discuss the issue fully with Natalie and also look at the practicalities of their home set-up such as location of bedrooms.

Pattie suggested the process of gradual withdrawal to Natalie.  This is a very gradual process of the parent moving away slowly from the child every few nights, or whatever pace suits the family.  Natalie has tried the process before but she didn’t have the confidence in the method to persevere. However, she was willing to try it again as she was in the right frame of mind and was more confident it would work.  She slept on the floor in Scott’s room to begin with, and gradually moved her mattress away.

Just a couple of months later Natalie had managed to achieve better sleep: “I am so pleased to be able to tell you that Scott is now in a new room and is currently sleeping through the night most nights and has been for the last month or so. I almost daren’t write it or say it because it is the first time in 10 years that I feel somewhat confident  that sleep will now be much better. Thank you for coming round and meeting me because it gave me the final push and incentive to do this and it will be life changing. Long may it continue, fingers crossed. I truly believe that if my child can be trained to sleep through there really is hope for other families.”

If your child is having problems sleeping please contact us on 01267 244210 or e-mail us at sleep@cerebra.org.uk. You can also complete a referral form on our website.

Cerebra’s Sleep Service Helps Caroline and Dylan

Caroline and Dylan

Caroline and Dylan

Caroline is mother to six year old Dylan who is thought to have high functioning Aspergers although the family are awaiting a formal diagnosis. Dylan’s condition has a huge impact on the family’s daily life, including Dylan’s sleep pattern. Caroline shared her story with us:

“My name is Caroline, I am mother to three children aged 5, 7, and 15. I also have two older step children. My youngest son, Dylan, is nearly 6 years old and we love him so much. Dylan likes Fireman Sam and Ben 10, loves talking about dates and numbers, has a beautiful smile and an incredible memory.

Dylan has been under a paediatric consultant for the past 3 years who thinks Dylan has high functioning Aspergers. Despite intervention and support from numerous agencies, we are still awaiting a formal diagnosis.

My husband and I face many challenges in caring for Dylan including regular issues with toileting, meltdowns, fixed behaviour, communication, sensory processing and most importantly: sleep!

I attended sleep seminars run by Cerebra and we were allocated a sleep practitioner, Catherine Stone. Catherine came to the house and set out a personalised plan to tackle the sleep issues. Followed up with regular support and advice on the phone, we have felt able to start moving things forward. I know that Dylan’s sleep issues won’t be resolved overnight, but my husband and I now feel empowered to make gradual changes in order to help Dylan and the rest of the family to have less interrupted sleep.

We are extremely grateful to Cerebra for providing us with this support, so I am running in a 10k event in Cardiff on 28 February 2016 to raise money for Cerebra so that they continue to help families like ours. Thank you Cerebra!”

“Thanks to support from Sleep Practitioner Catherine Stone, Dylan has slept through 11 nights in January, 15 nights in February, 18 nights in March and 20 nights in April! Before Christmas we were lucky if he slept through 4 nights a month! Dylan will now settle alone every night and is less stressed at bedtime.  I would like to thank Cerebra for their support and advice and would recommend this service to anyone.”

Caroline sent us this lovely video update of their progress following their support from Catherine:

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.

Teenage sleep problem solved

Sleeping boyLack of sleep can be a problem for many families, particularly those who have children with a neurological condition. Although sleep problems tend to be associated with younger children, older children and teenagers often need help too.

Cerebra’s Sleep Service provides advice and support to families trying to get a good night’s sleep. Sarah Coldrey, our Sleep Practitioner in the South West recently met with a family whose teenage son’s sleep routine was disrupting his education.

The Hunters have 3 children and sought our help with the sleep issues their eldest son was having – he is 15 years old and has ADHD.  The teenager wasn’t falling asleep until 5am most days and was very tired and missing a lot of school as a result. With important exams ahead this was becoming a real issue.

After meeting with the family and thoroughly assessing their individual circumstances Sarah recommended a technique called ‘Chronotherapy’. This involves altering bedtimes each night, but instead of moving the bedtime backwards gradually as you would with young children (this would take a long time to do and in older children isn’t as successful), you move it forwards, by a few hours each day.

Here is an example of how the times can be moved:

  • 1st night: sleep at 4 a.m., wake at 12 midday
  • 2nd night: sleep at 7 a.m., wake at 3 p.m.
  • 3rd night: sleep at 10 a.m., wake at 6 p.m.
  • 4th night: sleep at 1 p.m., wake at 9 p.m.
  • 5th night: sleep at 4 p.m., wake at 12 p.m.
  • 6th night: sleep at 7 p.m., wake at 3 a.m.
  • 7th night: sleep at 10 p.m., wake at 6 a.m.

This technique can be difficult to introduce as it needs careful management – a parent or carer needs to monitor the child and keep consistently to the timings identified above.

Despite having other children and health issues the family were determined to give their son the best possible chance with his exams and were keen to give the plan a go.

Sarah followed up with the family a couple of weeks later and was delighted to hear that the technique had been successful. The teenager had been consistently sleeping from 10pm – 6am every night and as a result had not missed school for a whole week, a dramatic improvement. Ironically the only issue the family were having was that their son now wanted to go to sleep before 10pm!

For individual advice on your family’s sleep problems please get in touch with our sleep service.

Sleep seminar

father and sleeping baby
On 13th November Cerebra held a seminar at the Thistle Hotel in Birmingham on ‘Sleep in children with developmental difficulties’. The event was held in conjunction with the Cerebra Centre for Neurodevelopment Disorders at the University of Birmingham.

The purpose of the seminar was to disseminate the findings of recent sleep research including the use of both behavioural and medical interventions and to describe the practical implications for parents and professionals.

Key speakers included:

  • Dr Andy Badshaw (University of Birmingham)- An introduction to sleep
  • Prof Paul Gingras (Guys and St Thomas) – Sleep in children with neurodevelopmental disorders
  • Lisa Fishwick (Parent) – The impact of having a child with sleep disturbances
  • Moira Draper (Cerebra) – Cerebra sleep services
  • Dr Luci Wiggs, (Oxford Brookes University)- Non-pharmacological approaches to sleep problems in children with neurodevelopmental disorders
  • Sleep research at the Cerebra Centre for Neurodevelopmental Disorders.

We had a very good turnout, with 74 delegates attending on the day. The presentations were excellent and stimulated much dynamic discussion amongst the group. Delegates said the day provided ‘good variation of topics and good signposting to relevant services; definitely felt more empowered to deal with sleep issues’ and stressed how important it was to have a parents view of sleep problems and their approach to a solution.

Next time delegates would like a dedicated seminar addressing sensory processing, challenging behaviour and mental health in children with developmental disabilities and more parent stories, talking about what worked for them.

Pairing yourself with a child with a neurological condition

pairing-bellaSleep Practitioner Bethan Roberts gives advice on pairing yourself with a child to help deal with problem behaviour.

Pairing is the process of creating an enjoyable and reinforcing relationship between the child/young person and a given situation/person. Pairing is a very important place to start when trying to create behavioural change, by pairing yourself (as a parent/carer/professional etc) with positive reinforcement, so that you become the reinforcer rather than just the giver of reinforcement, can help achieve behavioural change and enable children feel safer in unknown/unpreferred situations.

Social situations

Every child and young person has the right to be a valued part of their society. The level of involvement is very individual however.  Many adults that children and young people come into contact with have an expectation that children will seek social reinforcement naturally. However many do not and therefore need to learn and experience that these situations can be reinforcing. If we think about school as an example, is there a lesson or activity they’re struggling with? Try to establish what the specific problem is, for example is the sheer length of the assembly and expectation for ‘appropriate behaviour’ too much to be achieved right now? Is there a compromise to be made? Could the time spent in assembly be limited to 5 minutes and increased as tolerance is developed. This would ensure that the young person has access to high value reinforcement in exchange for the desired behaviour for example a magazine in exchange for remaining in assembly and not screaming.

pairing-poppyDay to day activities

Doctor appointments, supermarket shopping, day trips, play dates, going to the bank, dentist – the list is endless and somewhat overlooked sometimes by those who’ve never experienced a meltdown due to unforeseen cues at supermarket checkouts, or the smell of the dentists surgery. But when is this activity necessary? It’s quite common for children and young people to dislike attending appointments with the above professionals, but unfortunately somewhat necessary, and therefore something that could benefit from being worked on. Practice when success is not vital. Would your doctor/dentist be willing to see your child weekly (short term) for 5 mins to work on pairing with reinforcement? Could you call into the supermarket when you don’t need to buy anything, spend two minutes walking up an aisle and then out?

Deciding where to start when tackling these issues can be tricky. There are things that we could begin to deal with today and some that are best left to a later date. Below are a few points to consider:

  • What kind of benefit will they/the family get from this i.e. going on holiday vs supermarket shopping?
  • Is it essential that they are able do this right now i.e. attend a doctor appointment vs attending the school disco?
  • Be mindful of any additional demands that may be inadvertently placed on the child i.e. being quiet, sitting still
  • Try and have a bag of tricks with you. If they are sensitive to noise, could headphones or ear defenders be useful. Keep some high level reinforcement handy that you will only produce when demand levels are very high, these can be produced in exchange for desirable behaviour (perhaps teamed with verbal praise to reinforce what they’re doing)
  • Understanding why the undesirable behaviours happen can help to change them

Work with other agencies such as school, doctors surgery, youth groups, supermarket staff, etc to ensure success there too. It has been my experience that often (not always) people that you come into contact during these times can be important in achieving success. Very often, by sharing with them a little information about your child and what you’re are trying to achieve can help foster an environment of understanding and positivity. Don’t forget, safety is always the most important thing to consider. Never be afraid of admitting things aren’t going to plan. You can always abandon the plan and start again another day!

Early Rising

Small girl waking her parents early in the morning.

Early rising is a common sleep problem

Our useful checklist gives tips for what you can do if your child is an early riser.
Early rising is a common sleep issue. Have you considered or are you already doing the following?

  • Is your child waking due to a noise?
  • Is the room dark? If not, do you have a black out blind?
  • Is your child going to bed at the same time every night?
  • Does your child have a way of knowing when it’s an acceptable time to get up? ( e.g. a clock of some kind)
  • If your child is over 3, have they stopped having naptime?
  • If your child is under 3, have you tried reducing naptime?
  • Are you unintentionally rewarding them when they get up early by letting them come into your bed or taking them downstairs?
  • Have you tried using a reward chart for your child staying in their room until an acceptable time?
  • Do you have anything in the child’s room that they can do quietly if there is no chance of them going back to sleep?
  • Have you minimised anything in the room that is noisy or overly stimulating for your child?
Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.