Tag Archives: Sleep

Sleep Practitioner Shares Premature Birth Experience

Sarah with Theo

Sarah with Theo

Sarah Coldrey, Cerebra’s Sleep Practitioner for the South West, has just returned to work after taking a year’s maternity leave to look after her new baby, Theo. Theo was born at just 29 weeks gestation but is now coming on in leaps and bounds. Sarah told us about her experience:

“I was rather shocked when my waters broke at 28 weeks. I was sent to Derriford Hospital in Plymouth, where one week later I gave birth to my son Theo James Coldrey at 29 weeks gestation. He weighed 2lb 14oz.

Theo was immediately taken to neonatal intensive care and was supported with oxygen, kept in an incubator and tube fed with expressed breast milk.

He remained in the incubator and on oxygen for 5 weeks. Theo was then transferred to Torbay hospital where he was able to go into a normal cot, no longer needed help with his breathing and began to transition to breast feeding. We stayed in Torbay hospital for 3 weeks.

Theo now

Theo now

Theo and I were able to go home after 8 weeks. He would have been 37weeks gestation at this point, but was actually already 2 months old.

Theo will be turning 1 this weekend (8th May)  and is gradually catching up with his peers. He is a happy, inquisitive boy who definitely know what he wants.  I admit that I am happy to be back at work part time!”

Sarah is Cerebra’s Sleep Practitioner for the south west. We have a team of sleep practitioners covering the UK who can offer help and advice on sleep issues, including settling problems, difficulty sleeping alone and early rising. You can find out more about our sleep service here or contact us on 01267 244210 or [email protected]



Theo in an incubator

Theo in an incubator

Preventing premature births is a cause close to Cerebra’s heart. We fund research at Leeds University into understanding premature birth and predicting mums at risk of early delivery. Our aim is to prevent it from happening, so that fewer babies need neonatal intensive care and do not suffer the complications of being born too early. Over the period of Cerebra’s funding this work has led to a fall in premature birth rates with almost 350 fewer babies each year being born too soon. You can read more and watch a short film here.


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 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 [email protected] 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 [email protected].

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.