Author Archives: Sarah Jones

Cerebra Innovation Centre’s Rocket Shelf Finds a New Home

Eve and her rocket shelf

Eve and her rocket shelf

The Cerebra Innovation Centre recently designed these rocket shelves. This cool piece of equipment was originally designed for a young boy, to help his mum who has to transport numerous medical machines whilst transferring him from room to room.

They were styled to suit a child’s bedroom and be more like a child’s toy rather than looking dull and medical. They feature 3 shelves, space to store an oxygen bottle, a 4 socket extension lead so all the machines are plugged in and you only need one wall socket, and 4 omnidirectional wheels so it can be moved around effortlessly. Additionally, there is ample space to wind wires and store bits and bobs.

Since the team at the Innovation Centre first started making the shelves, there have been many happy children and parents that have benefited from the design, including Eve. She and Dad Steven are currently testing out the rocket shelves and sent us these gorgeous pictures.

The rocket shelf

The rocket shelf

Steven said: “It’s amazing THANK you so much I will send more pictures as we go on amazing.”

Heidi and Tim also had a rocket shelf for their little one Charlotte, and we were so pleased when Heidi sent us in this lovely feedback.

Heidi says “The shelving unit is working out great for us and easily stores all her machinery and medical items, fitting well into the bedroom space.

The fact it is on wheels is great as we have to change her ventilators weekly which means needing easy access to the back of the machines which the wheels and open backing provides for”

Thank you to everyone for the wonderful feedback on our rocket shelves.

 

If our Innovation Centre can help you and your family just get in touch on cic@cerebra.org.uk.

We Become Charity Partner of The Conquest

Conquest

Conquest

We’re very excited to announce that we’ve become charity partners of the Conquest.

The Conquest is a brand new seriously bouncy inflatable obstacle course where you can run, jump and bounce your way around their six massive inflatables.

We’ve tried out the course for ourselves and it’s a lot of fun!

The Conquest have a number of events lined up around the country for 2018 but the first event is taking place on 10th December at Carmarthen Showground. It will be getting eager Conquerors into the festive spirit by asking them to come dressed as Santa – there’s even a prize for the best dressed Santa!

As the charity partner of the Conquest, proceeds will be coming to Cerebra – something we’re extremely excited about!

You can sign up to take part in the Conquest’s December event through their website. See you there!

Dustin to Run London Marathon for Cerebra and his Buddy

Dustin

Dustin is running the London Marathon in April

We’re very excited to welcome Dustin Erhardt on to team Cerebra for the London Marathon 2018!

Dustin’s story of how he came to decide to run for Cerebra is a unique and inspiring one.

Dustin lives in North Dakota in the USA and first took up running when he joined a group called I Run 4 – who match runners with buddies who may not be able to run themselves because of physical or developmental reasons.

He was paired with a little boy from the UK called Samuel who has Autism and he has been the inspiration for him taking part in a number of marathons and in April, Dustin is planning on making the journey across the Atlantic to meet his buddy and run the prestigious London Marathon!

Dustin's buddy Samuel

Dustin’s buddy Samuel

Dustin told us: “For the past two years I have had the honour of being matched with an amazing little boy named Samuel. In this time he has become like a nephew to me and we have exchanged pictures, videos, medals, encouragement and so much more. In May this past year I ran my first marathon with him with me every step.  In training every mile that got tough I knew he was right there with me encouraging me to keep going.  And now in April 2018 I have been given the amazing opportunity to travel to London and meet Samuel and run the London Marathon with him there cheering me on in person thanks to Cerebra as they have granted me a charity entry into the heavily sought-after London Marathon.  Together we can bring awareness and support for all of those that live with Autism.

My buddy Samuel’s little sister Phoebe is also a member of the IRun4 group and she has a a genetic condition called xp11.4 duplication. She has a small hippocampus on the left side of the brain that is damaged and which they believe is causing her epilepsy. She suffers from this along with autism, delayed speech and a hearing condition called hyperacusis. So for me, supporting a charity like Cerebra is not only important for all children it is very near and dear to my “Family” (we have completely adopted each other as family). I run because I can. When I get tired, I remember those who can’t run , what they’d give to have this simple gift I take for granted, and I run harder for them.  I know they would do the same for me.”

Dustin is fundraising through his Virgin Money Giving Page and has already raised nearly £1,000! You can donate through this and help him reach his £2,000 target.

The London Marathon is taking place on 22nd April.

 

Our LEaP project helps Rhiannon get the continence supplies she needs

Rhiannon

Rhiannon

Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.

Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.

The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.

During our research into Louise’s problem, we noticed that another part of the guidance said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to explain Louise’s situation and highlight the contradiction between the different parts of the guidance.

In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.

The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.

Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.

If you live in England and you’ve had similar problems to Louise, contact us at probono@cerebra.org.uk

 

Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):

Please change or delete the green text as appropriate.

Dear Sirs

Continence products for my [son/daughter][name]

My [son/daughter] [name] is [age] and s/he has [disability/condition].

I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].

I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:

“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”

This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.

As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.

Yours faithfully

Your name

New Book on Autism in Our Postal Lending Library

We have a new book available from our Postal Lending Library.Through the eyes of me

‘Through the Eyes of Me’ by Jon Roberts

ISBN 9781912213009  £6.99

Through the eyes of a young child with autism. This lovely picture book is perfect for describing autism to a very young child. If you have a young child or grandchild with autism this would be a special book to read with them or their siblings. The little girl in the book is Kya, she tells us all about the things she loves to do, the things that interest her and the things she doesn’t like. Like any child with autism she has definite preferences. It is a beautifully illustrated book with pictures that weave in and out of the text. It is written by Kya’s dad, who says “we are all unique and precious and should embrace and love those differences with all our heart and being”.

For more information about our library please email janetp@cerebra.org.uk.

We Launch #FamilyFriday!

The Cerebra Innovation Centre has helped lots of families with their designs over the years.

From items which have everyday applications such as the Oxy-gem and the GoTo Seat, to their larger projects such as the Surfboard and Triathlon equipment which have helped children like Poppy achieve their dreams.

We want to celebrate all of our fabulous families with our new social media campaign – #FamilyFriday! Every Friday we’re going to dedicate our newsfeeds across our Facebook, Twitter and Instagram to all our families – whether you’ve been helped by the CIC or not.

We need your help! Share your positive pictures on any of our social media channels using the hashtags #FamilyFriday #CIC #CerebraInnovationCentre and we will post as many as as we can!

As well as celebrating the positivity of our community, we also want to highlight the great work that the team at the Innovation Centre does. Also they are always looking for new challenges so if you have an idea for a piece of equipment that would benefit your child, or have a problem that you think they may be able to come up with a solution for, please get in touch at cic@cerebra.org.uk.

Samuel and his family visit Cerebra HQ

Samuel, Angel, Jacky and Barry in our Fundraising Office

Samuel, Angel, Jacky and Barry in our Fundraising Office

We recently had some very special visitors at Cerebra HQ. Samuel Turner, his family and friend Angel are loyal supporters of Cerebra and have done lots if things to raise money for us including a bake sale at their local fete.

The whole family made the trip from their home in Essex to Cerebra’s Head Office in Carmarthen and spent the day in our fundraising department. They got to know some of our fundraisers and Samuel even took a donation from a supporter!

Samuel now volunteers for Cerebra by distributing our collection boxes in his local area and has even appeared on his local radio station to talk about Cerebra and the work we do.

It was lovely to meet you Samuel.

Impact of Headbanging and Sensory Issues on Sleep

One of our Sleep Practitioners explains  how she helped a family struggling with head banging problems:

“Mary came to one of our sleep clinics looking for advice on her  eight year old son George who has epilepsy.

George was head banging every night, throughout the night. Mary was concerned, as he would head bang so vigorously that it would wake him up and therefore he has a very disturbed night, as did the rest of the family.

Some research suggests that head banging can be reduced by introducing a different sensory input. I suggested introducing a fan at bedtime especially as we were having quite warm weather. A fan creates white noise (a steady, unvarying unobstructive sound).

I followed up with Mary after a couple of weeks and was amazed to hear that the head banging had significantly reduced, to the point where the sores on his head had improved dramatically. I didn’t want to count my chickens, and wondered if it was just a short term fix so agreed to follow up with Mary again in another few weeks. When I spoke to Mary again I was delighted to hear that the head banging had remained reduced and George was getting significantly more sleep.

Mary said: “We have tried so many things in the past, weighted blankets, music, lights on and off and even tried white noise through a machine but the fan we use is much louder than you would think would be conducive to good sleep. Since using the fan he only wakes a couple of times a night, can usually be resettled easily and even says in bed until around 6 am. For some reason the loud noise really calms him. We would never have risked it, had it not been suggested. Thank you.”

You can find out more about our Sleep Service here.

Sleep Practitioner Sarah Tells of her Own Experience of Sleep Training

Sarah and Theo

Sarah and Theo

Our Sleep Practitioner Sarah Coldrey is used to helping families with their sleep difficulties but, as she explains, that doesn’t mean she doesn’t experience the same difficulties with her child Theo. Theo was born prematurely and Sarah updated us on his progress as well as how she settled Theo into a better bedtime routine.

When Theo reached one we found that we were in a fairly good routine. He would wake around 6.30am, have 2 short naps a day and then bedtime was around 7pm. He was generally asleep within 10 minutes.

We followed the same bedtime routine every day. At 6.15pm he would have a bottle of warm milk downstairs, we would then go upstairs and Theo would have a bath for about 15 minutes. We would then go straight to the bedroom and get into pyjamas. Once ready for bed we would sit and read a few stories in dim lighting. I would then carry him to his cot and sing twinkle twinkle little star, I would leave the room and Theo would self-settle to sleep in a dark room with black out blinds, sometimes he cried but it was only for a minute or two.

Between ages one and two Theo slept generally very well and we felt lucky. Sometimes he would wake in the early hours but we found that this was probably because his room was getting quite cold and so we put a heater in his room over the winter that came on around 4am. This seemed to improve the situation and Theo would sleep until at least 6am.

Around the age of two, Theo started to wake in the night. I found this confusing as he was able to self settle to sleep and so I didn’t feel there was an obvious reason why he wouldn’t be able to re settle himself during the night. I did however feel that Theo was going through some developmental changes. His language was coming on and he was starting to potty train. He was also very clingy when I dropped him to nursery (normally he couldn’t have cared less when I left him)

For the first few night wakes, it was such a shock to the system that we just bought Theo into our bed as most people do (even though I’m a sleep practitioner, I’m still human and the need for sleep took precedent).

For some people co sleeping works well, but for us it did not as Theo tended to fidget all night and somehow take up nearly an entire double bed and so we needed a new plan.

Initially I used a chair bed (a fold out foam bed) and would lay on the floor next to his cot and sometimes hold his hand.

After doing this for a few days, I decided I was being too soft and wanted to move things along, so I moved onto a single bed that was in his room but was much further away from his cot. I felt pleased about this because he wasn’t coming into our bed and I was able to create a bit of distance between him whilst still being in his room.

Fast-forward a couple of months, Theo seems more settled in himself and goes to nursery happily again. Some nights he wakes in the night and we will leave him to self-settle back to sleep and some nights we know that he probably needs the comfort of having us nearby and so we still go into his room and sleep on the single bed. This is not ideal but it works for us in our real life. Theo continues to self-settle at bedtime and so I’m confident his good sleep habits will return.

However – I know we have a whole new battle ahead of us when we transfer Theo from a cot to a bed!

You can find out more about our Sleep Service here, or call our freephone helpline on 0800 328 1159.