Author Archives: Sarah Jones

Thanks for being Head Aware with us!

We’d like to say a huge thank you to everyone who joined in with our Head Awareness Week this year.

You really blew us away with all your commitment to wearing silly hats, wigs and whatever you could get your hands (or heads!) on!

A big thanks to Bolt Burdon Kemp, Centric Pontypool, Enable Law, The Hospital Saturday Fund, Irwin Mitchell Leeds, Novum Law, PenCru, Tomcat, Ruffer, Talking Mats and Wolferstans. They all fully embraced Head Awareness Week and got their staff to pose in an impressive array of head gear. You can see a selection of our favourite pictures below.

Thank you to everyone who took part and remember, if you would like to donate, you can still do so by texting HEAD20 and the amount you would like to give to 70070.

Alex Completes 60 Mile Trek

Alex and Ezra at Mwnt Beach

Alex and Ezra at Mwnt Beach

We would like to say a huge well done to Alex Elsaesser who recently walked through the night to complete a 60 mile trek along the Ceredigion Coastal path.

Alex said: “In the end it took us 29 hours walking to finish the 60 miles. Walking on the cliffs through the night was mental.  The group that organised the Walk pulled out a month before so we had to do it on our own. Fortunately we had beautiful weather and light winds. The scenery was beautiful but I would never suggest anyone do this all in one go. I never want to see another gate!”

Alex has completed many challenges for Cerebra previously including taking part in the London 10K for several years. He wanted to finish his run of fundraising with a bang and we think he has succeeded!

The 71 year old was joined on the walk by Jess Elsaesser and Ezra Mathias.

The group have so far raised an incredible £2,450 for Cerebra – far surpassing their initial £750 target. You can still support them through their Just Giving page.

Anne and Brian Make Fantastic Donation

Mrs Pearce hands her cheque over to Laura MacDonald

Mrs Pearce hands her cheque over to Laura MacDonald

The story of one little boy inspired Anne Pearce and her husband Brian to donate an incredible £5,000 to Cerebra!

Anne first heard about Cerebra from one of our Ambassadors, Nicola Tilson. Nicola has received support from our Sleep Practitioner Laura MacDonald for her son Alfie.

Nicola said: “Alfie had been diagnosed with a complicated medical condition. At that point, he had retired into his own world and we weren’t really sure how to bring him back.

When Laura came, it was a turning point for us. Since then, Alfie’s gone from strength to strength. It’s been progress after progress.”

Nicola has held several fundraising events for us, including several at Nationwide building society, where she works and that’s where Anne met Nicola and was touched by her family’s story.

Anne said: “I’ve been a customer for 20-odd years. I got to know Nicola and the fundraising they’ve done here. Nicola told me she wanted to fundraise for Cerebra for what they’ve done for her little boy.” When Nicola told Anne about her latest fundraising event, and she just simply had to be involved.

Nicola said: “Mrs Pearce, being Mrs Pearce, wanted to help. She came in to the bank a few days later with a cheque and we were absolutely blown away”.

Anne and Brian are both battling cancer themselves but still feel compelled to help in any way they can. As well as helping with donations, Anne has also knitted outfits which were used to clothe premature babies at St James’s Hospital in Leeds.

Thank you Anne and Brian!

Massage Helps Improve Bedtime Routine

Our Sleep Practitioner Pattie Everitt was recently able to help Freddie and his mum Abbie build a better bed time routine, improving the quality of family life for everyone.

Freddie had problems with night waking from around 9 months old.  He was not crying or upset but tended to talk to himself, shout and make loud noises. His mum, Abbie, got in contact with us when Freddie was 4 years old. He went to sleep fine each night, but was often awake for long periods during the night, sometimes up to 4-5 hours. Abbie would try to calm him down and get him back to sleep, but nothing seemed to work.

Pattie Everitt, one of our Sleep Practitioners, went to visit Abbie to discuss some new ideas she could try.  Although he was settling quite well, they talked about how making Freddie more relaxed before bed might help him sleep better at night.  This included introducing a wind down routine that was relaxing for him, and Abbie decided to try a back massage to help calm him down before bed.  They also discussed using weighted objects, such as heavy cuddly toys/ wheat sacks that might help Freddie feel more secure. Pattie also suggest a slightly later bedtime as he was going to bed quite early.

After some ongoing email support, Abbie managed to improve Freddie’s sleep quite a bit. The waking in the night reduced enough so that is was more manageable, with him not waking until around 4am (then going back off to sleep), so sleeping for a much longer block. He also enjoyed the back massage!

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

Samuel and Angel Bake Some Sweet Treats to Raise Funds

Samuel, Angel and Jacky

Samuel, Angel and Jacky

On Saturday 1st July 2017, Samuel Turner and his friend Angel raised £50 for Cerebra at a fete at Treetops, a specialist school in Essex.

They made some delicious cakes to sell at the fete and even made a very special Cerebra cake which was of course Samuel’s favourite!

Cerebra Cake

Cerebra Cake

Samuel said: “In my heartfelt experience, it’s never a matter about what it means to anyone, this lovely Cerebra cake is not just to raise money for the charity, it’s about hope and capability to show that there are children around the UK that are suffering problems inside and I believe that we should help to find a solution because people might be unaware of the child’s problem.

I’m proud to make this special cake. I think some student and pupils would love the cake I made and me, my mum and my friend Angel have felt the love for being at Treetops School to help Cerebra. This does makes me, my family and my friend Angel feel so special for our great efforts since I started helping the charity at the start of 2017.”

For Samuel’s friend Angel Jolly, it was a life changing activity unlike anything she has ever experienced.

Fete table

Fete table

Angel said: “We all were excited to be at Treetops fate. Once we got there, we all worked hard as a team to decorate our table for the fete. At first, I thought we’re going to sell a lot of cakes. Sam and I wore the Cerebra shirt and Jacky, which is Samuel’s mum was wearing a Welsh t-shirt. Originally, the Cranberries cake went to the Bake-off competition but we didn’t win. In the end, we took part and we are all very happy.”

We’re very lucky to have fantastic fundraisers who are always willing to go the extra mile to raise funds and awareness for Cerebra.

If you would like to find out how you can support Cerebra by holding your own event like this, please contact our fundraising team on 01267 244222.

 

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.