Author Archives: Sarah Jones

Night Waking and Building a Better Bedtime Routine

James

James

James’ family were struggling with his bedtime routine and night waking. Our Sleep Practitioners, Pattie Everitt explains what sleep and advice she was able to give to help them tackle the problem.

Seven year old James has ASD and had great difficulty settling to sleep. He needed a parent with him until he fell asleep. He also woke in the night, went to his parent’s bed, and would then stay there for the rest of the night.  This would result in his dad moving to sleep on a mattress to be able to get more sleep.  The parents were finding this a great strain, as they did not have an evening together or a good night sleep.

Pattie explained that the waking in the night is something everyone does, normally without realising, but because James settled with a parent at bedtime, he would wake up, notice that they were not there, and then need their assistance to settle again.

The normal approach to this problem would be to reduce the contact gradually, by sitting a bit further away every few nights as the child is falling asleep and keep doing this until the parent is back downstairs.  Pattie advised the family to try this, along with keeping the wake times the same each day so that James would get into a more consistent sleep pattern.  A couple of months later, James’  mum replied with the following:

“Thank you for your response and advice. We have started the process of removing ourselves from James’ room at bedtime and he is now accepting us being out of the room – just outside. I suspect that the next step is to move further away which will then, as you say, reduce the nighttime anxiety, as he will get used to being on his own. We have also been sleeping with him during the night to keep him in his own bed and out of the habit of coming into our room.  We are now thinking about whether we can move out but looking at your advice, we would also have to do this slowly.

Thanks for the advice on consistent bedtimes/wake times. We have managed to get him to bed a bit earlier by creating a more consistent routine but it can still take him a long time to go to sleep. I suspect that might just be the autism and a need to wind down?  If we can get him to stay in his bed this, together with an earlier bedtime, is perhaps not so much of a problem.”

The parents persevered with the technique over the next few weeks, and also introduced one of their own:

“We have recently turned a corner with James’ sleeping with the use of a book on CD at bedtime.  We listen to the CD with him, following the book, and then we turn the lights out and leave it on repeat at a quiet volume. James has learnt that when the CD is on, it is time for bed and that he should stay there. Although he still takes a while to settle to sleep, with the help of the CD, he is staying in his room.  We leave the CD on very quietly through the night and he now stays in his bed.  This is a dramatic turn-around and I think this strategy has worked because it provides a clear structure/cue about what James should be doing, and the CD helps his anxiety about being on his own/going to sleep.”

According to Pattie, using sound such as a CD to help with sleep can be beneficial, but if used for settling at bedtime it is often best to keep it at a low level all night as James’ family did so that he is exposed to the same environment when he wakes in the night.  This can help the child fall asleep again on their own.

James’s mum was grateful for the support through the process:

“There is so little help out there for sleeping difficulties so your service is so valuable!“

You can find out more information about our Sleep Service here.

Alex Braves Coastal Path Trek

Alex, Jess and Ezra training on the Coastal path

Alex, Jess and Ezra training on the Coastal path

Never one to shy away from a challenge, 71 year old Alex Elsaesser is preparing to tackle his biggest one yet – walking the entire 60 mile stretch of the Ceredigion Coastal path, all in 24 hours.

Alex has worked for Cerebra for 16 years and this isn’t the first time that Alex has taken part in an event to raise money for us. He ran the London 10k for a number of years, even taking part with his daughter Alissa who is also a volunteer for Cerebra.

This is to be Alex’s last challenge for Cerebra and he wanted to make it a memorable one!

Alex said: “We have been training for months. I even joined Weight Watchers because I was overweight and have lost 18 lbs. During my time at Cerebra, we have helped so many disabled children and their families.”

Jess Elsaesser and Ezra Mathias will be joining Alex for the trek. Ezra is raising money for Cerebra and the British Heart Foundation. Jess is raising money to purchase sensory toys for the Children’s Ward at the Royal Gwent where she is a staff nurse.

All three are committed to do the walk on July 8th. They will be helped by their training coach, Julie Pritchard who will be bringing food, fresh clothes, drink and moral support for this difficult challenge.

If you would like to sponsor Alex, Jess and Ezra, you can do so through their Just Giving page.

Join our team and be a Triathlon Superhero!

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends.

The event will take place in Dorney Lake, Windsor on 19th August and promises to be a fun filled day with the chance to meet and take part alongside Paralympian and celebrity team captains.

We’re thrilled to be a charity partner for the event and we’re looking for people to join us on Team Cerebra. There are lots of different ways to take part, the only requirement is that one person on your team (or you if you choose to fly solo!) must have a disability:

  • Team up – unite with disabled and non-disabled friends and family to share the fun
  • Grab a sidekick – tow a teamate in the water and push or pull them around the course
  • Fly solo – for those who want to take on all the triathlon stages by themselves.

There are also three different distances that you can choose from:

  • Sprint – 150m swim, 3k cycle, 1k run
  • Half – 400m swim, 10k cycle, 2.5k run
  • Full – 750m swim, 20k cycle, 5k run

Father and daughter team, Rob and Poppy, have already signed up and have been chosen to take part in a special celebrity race. They’ll be partnered with Olympian Chris Jones and will be competing against the likes of Hannah Cockcroft and comedian and talk show host Adam Hills.

You can find out lots more about the event on the Superhero Series website, but if you’d like a chat about the different options and how we can help you to take part please just get in touch with ceciliab@cerebra.org.uk.

We’ve got people on hand to help out with the running, cycling or swimming legs and may also be able to supply some equipment – including a specially designed boat.

We’d love you to join us and show off your superpower. So please get in touch – it’s going to be awesome!

 

 

Sleep Seminar Gives Advice on Aromatherapy, Mindfulness and Massage

We recently held a Sleep Seminar in Leeds at the Mencap Centre. The theme of the day was supporting sleep through mindfulness, aromatherapy and massage.

Alongside a presentation from our own Sleep Practitioners was Lois Skilleter, from Earthereal of Yorkshire therapies. Lois gave a great presentation on each topic and everyone eagerly took part in the practical demonstrations of either hand massage or head, neck and shoulders in the afternoon, with the support of Lisa and Amanda, Lois’ students. This provided a wonderful relaxing and enjoyable end to the day for parents and professionals, whilst a special mention must be made to our Sleep Practitioner,  Laura MacDonald  who selflessly put herself forward to be Lois’ demonstration model!

We also had Phil Truby from Yorkshire Sport Foundation talking about how they support children and adults who have disabilities to access sport and activities, as well as the positive impact that has not only on their fitness but on improving their social networks and emotional wellbeing.

We had so many positive comments about the day, here are just a few:

‘After 10 years of living with a child with a sleep disorder, I feel that despite thinking we had tried everything, we learned new techniques.’

‘I suffer from ticks and verbal shouting and was terrible on the journey to the seminar. I soon calmed down with the welcoming environment, lovely staff and relaxation exercises. Even my husband, who initially thought it was nonsense, benefitted from the mindfulness exercises.’

‘It has given me the confidence to go and try these things at home.’

‘Lots of ideas that a frazzled, sleep deprived mum would not consider.’

‘Having been shown how to massage, this will be very useful. I will definitely be doing this with my son.’

We were very grateful to have the event sponsored by Irwin Mitchell, who also very kindly provided the lunch, which was absolutely fantastic and much appreciated by everyone who came.

A huge thank you also to the staff at the venue who went out of their way to help us and everyone who contributed to make the day such a success. There are definitely a few children who will benefit from receiving their parent’s new found skills!

You can download handouts from the day below:

Aromatheraphy and Massage Handout Mindfulness Handout

Better Bedtime Routine

Our Sleep Practitioners provide support for families on a range of sleep issues. One of our Sleep Practitioners, Sarah Coldrey was recently able to Oscar settle into a regular bedtime routine. His mum explained how this has helped.

“I’ve just put Oscar to bed. It’s 9.15pm and I’m now sat downstairs enjoying peace and quiet while he settles… In his own bed, in his own bedroom, upstairs alone.

He may wake up once during the night. If he does, I will return him to his bed and he will go back off to sleep, usually within 10 minutes… no great fuss.

Nowadays, more often than not he does not wake during the night.

He will wake at around 6am and sometimes climbs into our bed for a cuddle before dozing for another hour. Some mornings he is awake a little earlier, at around 5am, but again dozes until it is time to get up. And on rare mornings he wakes up at about 6am and he doesn’t need to doze, so we get up.

But gone are the 4.30am-5.30am regular starts to our day.

Also gone are the two hours spent settling him every night, with one of us having to stay in his bedroom until he finally fell asleep at gone 10pm.

Gone, too, are the night wakings, often up to three or four times between going to sleep at around 10.15pm and starting the following day at 5am.

What we have now is something that, just a few months ago, was unimaginable.

Last August, Oscar was nine years old, a month away from his ASC diagnosis and had never slept the night through. He had always needed us with him to settle. He had always woken throughout the night. And very often he was awake for the day before sunrise.

And then we embarked on a Cerebra sleep programme with the lovely Sarah Coldrey, who visited us and gave sound advice about Oscar’s bedtime routine (we had a routine in place so we just needed to tweak it!), a plan to follow for settling and managing night wakings and, most importantly, the inspiration for us to succeed.

Sarah explained how what seemed like the unachievable was, in fact, quite achievable – slowly.

All we had to do was follow the plan. We were in it for the long haul, not expecting this to be a quick fix. But, just three months after starting the sleep programme, we were seeing results.

Our gradual withdrawal from Oscar’s bedroom as he settled turned out to be easier than we had ever thought possible. We’d previously attempted something similar but had given up because we had, in hindsight, expected progress to be much quicker.

This time we took baby steps – and they worked.

Oscar is now functioning much better during the day. He says he is ‘not as grumpy’ – positive proof that a good night’s sleep is good for everyone!

Thanks Cerebra, thanks Sarah!”

If you’d like some help from our Sleep Service you can find out more here.

Poppy to Take on Second Triathlon Challenge

Rob and Poppy

Rob and Poppy

Last year, eleven year old Poppy Jones realised her dream of competing in the Cardiff Triathlon. This was particularly challenging for Poppy as she has chronic lung disease and quadriplegic Cerebral Palsy. This means she can’t sit, stand, roll or support herself and life is a daily challenge for her, but having a life-limiting condition doesn’t stop her having fun.

Poppy’s Dad Rob helped make her dream come true by pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre (CIC).

The father and daughter team will be once again rising to the challenge, taking part in the Swansea Triathlon on 28th May.

Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

The team at team at the Innovation Centre, who designed the equipment that allowed Poppy to take part in the Triathlon last year,  took this opportunity to re-design some of the equipment to allow Poppy to compete on an even larger scale.

“Last year, we designed a chair and boat in Poppy’s favourite colour – yellow,” says Dr Ross Head from the CIC.

“For this year’s challenge, we’ve modified both products to make them more efficient; to make them faster – and to change the look to match Poppy’s new favourite colour, orange!

“Poppy’s also grown a lot since last year’s triathlon and the boat we built last year was too small. So I redesigned the boat to be bigger, however this meant it would be heavier, so I started from scratch using everything I had learnt about hydrodynamics to ensure the boat would be fast, efficient and create the minimum resistance so that Rob could swim the course. This year’s boat uses a V-shaped tri- hull. This allows speed through the water but is given stability by the two smaller outrigger hulls.

“Poppy’s Triathlon Chair has also been upgraded to make it faster and more comfortable. The guys at V-Trak very kindly donated some high quality wheels to help them roll to the finish line. It has upgraded bespoke components which will ensure efficiency, a speedy transition from cycling to running and ensure Poppy’s safety.“

The CIC team recently tested the boat out on the water (see below for photos).

You can sponsor Rob and Poppy through their Just Giving page.

 

 

1000 Families Study – Age Range Extended

Are you the mother, father, or caregiver of a child aged between 4 and 15 years, 11 months who has a learning disability?

Our 1000 families study, carried out at the University of Warwick, is exploring the experiences of family members who live with a child with a learning disability.

The study has recently received permission from the NHS Research Ethics Committee to extend the age range. We can now include children in the study if they are between the age of 4 and 15 years and 11 months (previously 4 and 11 years and 11 months). We heard from a number of families who would have liked to take part, but were unable to because their child was between the ages of 12 and 16 years. If this is you, we’d  love to invite you to get involved.

We are really keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK and help shape future information and support.

University of Warwick logoIf you are the parent/caregiver of a child with a learning disability between the age of 4 years and 15 years and 11 months and would like to take part in a large scale family research project, please follow this link to find out more and complete the online survey.

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

 

Angelicus Celtis Wow Britain’s Got Talent Judges

Angelicus Celtis during one of their shows

Angelicus Celtis during one of their shows

Our Ambassadors Angelicus Celtis wowed audiences on Saturday’s Britain’s Got Talent with their stunning rendition of Nessun Dorma.

Angelicus Celtis are avid supporters of Cerebra and are always eager to be involved with the local community. They recently held a successful “Sing and Play” event where they invited our families to come along for a morning of singing and fun.

They have also raised money for Cerebra through several of their concerts and supported us at several major events.

The choir is made up of a group of school girls from Llanelli and entered the competition determined to try and win for their hero teacher Mr Williams, who was recently in a car accident. Mr Williams and his wife came up with the idea of forming Angelicus from the ranks of the Hywel Girls’ Choir & Hywel Boy Singers.

They have done Mr Williams proud so far but now they need your help! They need your support to help them win Britain’s Got Talent! Every vote counts and will help them get to the final. It’s really easy to vote, all you have to do is download the Britain’s Got Talent app for your smartphone or tablet and follow the instructions when voting opens during the live shows.

 

 

 

 

 

 

Let’s get them to the final!

Watch their emotional first audition:

 

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Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.

Sleep Walking to Success

The walkers before they set of

The walkers before they set off

On Saturday 6th May we held our second walk to the top of Pen-y-Fan in the Brecon Beacons to raise vital funds for our Sleep Service.

Following a safety briefing from the fabulous mountain rescue team, our brave walkers grabbed a glow stick each and, with an overwhelming sense of camaraderie, made their way to the summit!

This year, we were also joined by the Côr CF1 choir who not only braved the walk to the top of Pen-y-Fan but then entertained everyone with a few songs at the top. They were in fine voice, even after the trek up the mountain!

So far, this year’s Sleep Walk has raised well over £3000 and this will help fund our Sleep Service which aims to help families with children with brain conditions get a good night’s sleep.

We would like to say a big thank you to everyone who took part in the walk and for joining us on our journey to help families discover a better life together.