Is your child getting unsuitable continence products?

Have you been told that your child can’t have the type of continence product that she needs? Are you concerned about the quality of the products you use? Read on to find out what you can do to make sure your child gets suitable products.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We helped Louise get continence products for her daughter, Rhiannon and asked the Welsh Government to make sure that its guidance did not set a daily ‘maximum’ on the number of products available to families.

We also know from our work with families that the type and/or quality of products can cause problems too. We recently heard from a parent who wanted ‘pull-ups’ for her daughter instead of nappies. She was told that her local health authority didn’t supply them and she contacted the LEaP Project for help.

We wrote a template letter to help the parent make a complaint to her local health authority. Our letter quotes from the relevant guidance, which makes it clear that children should be assessed and provided with products which meet their individual needs. We wanted to share this template letter with other families who might find themselves in a similar situation.

So, if you’ve been told that your child can’t have the products s/he needs, you can use our template letter to make a complaint. We have separate versions for England and Wales.

That dog has got a beard!

We’ve got a great new children’s book in our library that explores the consequences of being different. ‘That dog has got a beard!’ is all about Buster who feels sad and worried because every time he goes out for a walk people stop and stare at him. He doesn’t know why this is happening but with a little help from his family, he begins to realise that being different isn’t such a bad thing after all.

Author Natalie Ann Beattie told us a little bit about herself and the reasons why she wrote the story:

“First and foremost, I am a mother of two young children, Ethan and Isobelle. Ethan is 13 years old and Isobelle is 6. My son Ethan has Autism and ADHD, which are both very challenging and complex conditions. Before becoming a full-time mum and carer for Ethan, I was a Primary teacher for almost 10 years. I taught children from the age of 3 up to 11.

When my son was a little over 18 months things began to change, he stopped speaking and eating, and his behaviour became challenging and repetitive. I left my teaching to focus on his care, and at the tender age of 4 he was diagnosed with ASD and, two years later, ADHD. I have spent the last 10 years plus gathering all the appropriate help and support required to manage his condition and thus enable him to develop socially, as well as mentally and physically. As you can imagine, it has been an incredibly difficult and challenging journey for all of us. However, the time has come to use all those years of experience in a positive and fulfilling way.

“That dog has got a beard!” is essentially a story about a dog who, because of the way he looks attracts a lot of unwanted attention from other people. When the owners of the other dogs start talking about Buster’s beard and laugh at him, he becomes sad and worried and struggles to work out why he is different to everyone else. Fortunately, with the help and love of his family he learns to embrace his difference and become a happy dog once again.

The story is loosely based on some of the negative responses we have received as a family when we have gone out together with Ethan and something has triggered a ‘meltdown’. The frequent stares, snide remarks and hurtful comments have been devastating and a cruel reminder of the need for people to accept and become more aware of children and adults with autism. We have learned to embrace our son’s condition and to see him as a very special and wonderfully unique young person. I felt that now was the time for the rest of society to appreciate his autism and learn to celebrate, not mock, other people’s differences, whether they be physical, mental or behavioural. In essence, for society to accept him, not the other way around.

The second reason for my story is a simple one. Every time we go out for a walk with our Labradoodle, Buster, people stop and make a comment about his beard. The phrase ‘that dog has got a beard’ was one that I heard so many times that it sparked off the idea for the book. How often do you see a dog with a beard? Especially one that is 7 inches long! Buster is a wonderful dog and has an amazing temperament. He is loved wherever he goes and we are regularly invited to schools, mother and toddler groups, sports clubs and residential homes to do book readings. Buster is a hit with all ages.

Thank you Cerebra for including my book in your library.”

You can borrow ‘That dog has a beard!’ free of charge from our postal lending library.
You can also find out more on Natalie’s website and follow Buster’s adventures on his very own Facebook page .

Accessing Public Services Workshops

accessing public services workshops

Are you interested in hosting a workshop to help families access services for their disabled children? We are taking bookings for our popular Accessing Public Services Workshops for 2019.

The workshops are based on our comprehensive problem solving Accessing Public Services Toolkit which you can download for free from our website. We also have a version for Scotland.

The Workshops are run by our trained facilitators and will help parents and carers to access health, social care and other services for their children. They include case studies and template letters on direct payments, respite care, Disabled Facilities Grants (Disabled Home Adaptations in Scotland), residential placement and school transport. By the end of the workshop, parent/carers will be able to:

  • Identify commonly occurring problems facing families accessing services and recognise different types of dispute
  • Come up with problem-solving approaches to these problems
  • Use a number of template letters when corresponding with public bodies

The workshops have also been accredited by the CPD Certification Service.

The workshops are free of charge and open to any organisation or parent/carer forum that supports children with a brain condition. They usually run from 10am to 2pm to fit in with the school run. All we ask is that the organiser provides a venue (with a projector), the attendees (a minimum of 10 and maximum of 25) and that there is a 30 minute lunch break. It’s up to the organisers whether they provide refreshments or ask those attending to bring their own.

The workshops have had great reviews and some of the feedback includes:

“The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs”.

“I found the information really helpful also and feel sure it will help me support our families better in tackling some of the issues we discussed”.

“Thank you again for your support through our journey, we do not regret making the complaint, nor where we are now. Too many people here do not get the support they are entitled to but we were the ones that stood up”.

“Knowledge is power! We need as many of these sessions as possible to enable us to take action”.

If you are interested in hosting a workshop then please get in touch with [email protected]

Making dreams come true this #GivingTuesday

#Giving Tuesday is on November 27th and this year we’re celebrating the amazing work our Innovation Centre do to help children achieve their dreams, however big or small. Children like Imogen, who we helped to achieve her dream of making it to the top of south Wales’ highest peak. You can help us make even more children’s dreams a reality. A gift from you, whether large or small, will make a positive difference to a young person’s life. You can either text WISH07 £5 to 70070 to donate £5, or use the form at the bottom of this page to donate online. Thank you.

Six year old Imogen was born with cerebral palsy and needs a wheelchair to get about. She often can’t take part in activities that her friends take for granted. She wasn’t even allowed to take part in her school sports day. Like most children her age Imogen is lively and adventurous and her inability to get involved makes her feel frustrated, sad and lonely.

At Cerebra, we don’t believe there is any challenge that can’t be overcome. When our friends at Specsavers arranged a sponsored walk to the top of Pen-y-Fan, we thought ‘let’s see if we can take Imogen with us’.

Help us work wonders for children this #GivingTuesday

Our Innovation centre adapted a special four-wheeled mountain bike and, with support from a team of volunteers, Imogen showed grit, determination and stamina to make it to the top. The smile on her face says it all.

With your help we can make more children's dream become a reality

With your help we can make more children’s dream become a reality

Imogen’s mum, Catherine told us: “Imogen is thrilled and excited to have had this adventure. She’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being given the opportunity to do things a child her age should be able to do is a real boost to her confidence and self-esteem. she really is over the moon.

If they can dream big, they can do big - never accept it's not possible!

If they can dream big, they can do big – never accept it’s not possible!

Imogen’s next dream? To become a Paralympian. Watch this space!

#GivingTuesday is on 27th November and you can follow our conversation on our social media – we will be using the hashtags #GivingTuesday and #Cerebra. We would also love to hear if you will be taking part in any fundraising – be sure to tag us! Please help us to make even more children’s dreams come true this #GivingTuesday.
Text WISH07 £5 to 70070 to donate just £5.
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Photos by Dimitris Leakis/ Athena Pictures

Soaring high

Our Innovation Centre are proud to make products that help disabled children to enjoy and experience life alongside their friends. Sometimes the most simple of things make the biggest difference.

Owen’s mum got in touch for some help. Owen loves to join his friends on the swings in the park but sometimes forgets to hold on. Our team at CIC simply converted a climbing harness to fit Owen and to clip onto the swing’s chains, keeping him safe as he soars.

A simple job but one that has made a huge difference to young Owen’s life.

Watch Owen in action

If we can help you with an everyday problem, however big or small, we’d love to hear from you. You can contact us on [email protected].

CIC come up with clever 3D printed solution

The Cerebra Innovation Centre (CIC) were recently asked for help with a small project, which really emphasises the usefulness of 3D printing and the computer age when trying to solve tricky little problems.

Going back only 6 or 7 years, this problem would have required meeting face to face, taking measurements, a day or two in the workshop and returning to fit the product; now with a photo and a few clicks of a mouse, CIC were able to produce a product in record time!

Bryher Hill, an occupational therapist in South Wales emailed CIC to ask for help. A cheeky young lad on her case load kept switching his wheelchair’s dual controls off so that he could override his helper.

Bryher explains: “I have always been aware of the CIC but haven’t needed to ask for their help until now!  I attended a wheelchair assessment for a young child that we work with and we found that he would try to turn the wheelchair power off whilst his carer was driving the wheelchair as it had dual controls.  I was concerned that if he were to do this in the middle of a road crossing or similar, it would be dangerous, so decided to ask CIC if they could design a cover for the control unit.  I took a couple of photos and some quick measurements at the wheelchair handover and sent them over to CIC.  They did the rest; for free! Ross’ skill and communication have been fantastic, and I am in awe of 3D printers and what they can do.  Thanks for your help.”

Bryher cleverly took some photos of the control unit- plan, side and quarter views, and drew a quick sketch of the unit including the outline dimensions. This was enough for the CIC designers to set to work. Using their high tech computer aided design (CAD) software called Solidworks, they generated a model of a part which could cover the control unit sufficiently that our cheeky young client could not switch it back on, but which was quick and easy to pop on and remove without causing any damage.

As if this was not high tech enough, with a few clicks of a mouse, the model was sent to another software package to prepare it for 3D printing, which in turn was wirelessly sent to the Ultimaker 3D Printer. 3D printers are able to make plastic parts and components by melting a thin filament of plastic which is fed into the machine, and a print head deposits the plastic in place according the model file that is uploaded. This machine was very kindly donated to CIC by Mr and Mrs Coventry who run Claire’s Project. The printer has seen hundreds of hours of use and has made some amazing parts which have helped children across the UK live their lives with a little more comfort -and fun!

If you have an idea that you think the team at the Innovation Centre would be able to help with, please get in touch! You can email them on [email protected] or give them a call on 01792 242688.

 

Here’s the journey from start to finish:

Book reviews

two little boys reading

Our librarian Jan reviews two new books you can borrow from our postal lending library.

there are things I know book cover

‘There are Things I Know’ by Karen B Golightly

What happens when a man you’re sure you’ve never met before picks you up from your school trip and says you mum has gone to heaven and you have to go to a new school? Well if your mum has taught you The Survival Game, you are good at maths and love computer games surely things will work out OK. Told by 8 year old Pepper who has his own way of looking at the world. Can he work out how to find his mum and older brother and sister? He may love helping out with the chickens and the teachers at his new school but does he really believe his mum is in heaven? There are things he knows and he knows that his mum is not dead. An intense read that keeps you in suspense right up to the end.


eye can write book coverEye Can Write by Jonathan Bryan

This is a very special book written by a 12 year old boy who is unable to talk or write, he has spelt out letter by letter using a spelling board. You can watch him doing it on his blog.

In the book you really get a sense of Jonathon’s love for life. He tells us about the inner world he inhabited before he was able to communicate and how it felt to finally be able to interact with his family and the world around him. He writes with joy about his sisters and his friend at the special school, Will. Jonathon tells us about the long process of learning to use the spelling board and how frustrating he finds eye-gaze technology.

He has won several awards including a ‘Diana Legacy Ward’ presented to him by Princes William and Harry and tells us about his experience of that night. And he writes about ‘Teach Us Too’, the charity he fronts that aims to promote the teaching of literacy to all children, regardless of their disability. We are sure to hear more from this remarkable young man in the years to come.


To borrow both either these books from our library contact Jan on [email protected] or 01267 244203.

An introduction to us

My name is Emma and I am married to Michael – it is our 23rd wedding anniversary today – and together we take care of Joshua, our 17 year old son.

joshua and emma

Joshua was born on 5 march 2001, after being induced as he was two weeks overdue. It was a very speedy delivery, which I do not remember too much about, but he began fitting as soon as he was delivered and so he was taken away to an incubator immediately. Later that same day, when he continued to fit and required oxygen to breathe, we were both transferred in separate ambulances to the Special Care baby unit across the city. We stayed up all night watching him and jiggling him as we had been shown, when he forgot to breathe.

On our 4th day in SCBU, Joshua had a MRI Scan and we were told that he had ‘devastating brain damage’ due to a stroke, and that he may not see, hear, walk or talk. This was unbelievable news to absorb and it took another week in SCBU to adjust and to get to know how to care for him properly.

When he was 11 days old we brought him home and we tried to do what we had been told, to treat him like a normal baby. We had no other children so that was all that we could do and Joshua thrived. He grew from being a very thin, newborn to a chubby, smiling one year old. We had regular health visitor attention and Joshua received Portage input too. With the help of splints, Joshua walked and he talked, he would say “hiya” to everyone when out shopping. So I was able to fool myself into believing that, he may be a bit slower than his peers, but that he would achieve all of his milestones.

It was only when Joshua started at Nursery school, when he was at aged 3 or 4, that I suddenly saw that my bouncing boy was not the same as his friends, and it came as quite a shock. At 4 years old, epilepsy became a real issue and we had to start on anti-epileptic drugs. Joshua progressed with his peers to mainstream primary school and thanks to his brilliant Nursery head teacher, he had a statement which meant that he had a full time teaching assistant to support him there. He loved the first couple of years in reception classes, when he would sing at himself in a mirror – he did a great rendition of ‘Magic Moments’ and ‘Close to you’.

But as everyone got older, he was spending more and more time alone with his TA in a small room playing with toys while his peers were learning maths and history. So we made the difficult decision to apply for a Special School place for him. When he was 7 years old, Joshua left his ‘friends’ behind and changed to a special school. His first was not a great success as it coincided with his epilepsy getting much worse and the school was simply not equipped to deal with the aftermath of seizures, so he was forever being sent home or sent to A&E in an ambulance.

In 2011, when Joshua was ten years old, we went to a tribunal to move him to another Special school, which had school nurses on site. Joshua is still at that school now, in their 6th form, and it suits him very well. When you find the right placement for your child, it is a very comforting feeling, as though he has gone ‘home’. I like the school so much that I have become a school governor and volunteer there a lot. I have a mission to support other parents and to encourage them to socialise more, so I run a monthly coffee morning for parents when we enjoy cake and chat. I have also just begun to organise termly mental health sessions for parents and carers, as it is still a taboo subject and yet a very real problem among our community of parents.

However the end is well in sight. Joshua will have to leave this school when he is 19 years old, in July 2020 and so we will soon begin the ‘transition’ process. I detest transition as in my experience, it involves changing from a comfortable, familiar environment to one that is unknown and frightening. I begged Joshua’s nursery head teacher to keep him there until he was 16. She refused, on the grounds that he would be too big for the furniture! I have stopped begging now. I realise that time moves on and that Joshua will have to too, but it does not mean that I have to like it. I have made great progress in the last year as I am no longer an ostrich about it and that is largely due to our Adult social worker who has given me more confidence and keeps us on track.

We are currently in the process of looking around alternative respite provisions, as where he currently goes once a month for a weekend’s short break, will no longer be able to keep him once he turns 18 next March. Once that is resolved, we can turn our attention to his day care provision. We are going to lose the epilepsy nurse who has supported us for the last 13 years, as we are transferred into adult healthcare. It is all change, so turning 18 for Joshua is not like the momentous milestone that it is for his peers: it will not be about legally drinking alcohol and going to university for Joshua, it will be about transition to adult services and starting again, just as we were on an even keel with his health and social care.

You can read more from Emma on her blog Ups and Downs Mum. Emma will be writing some articles for us so if there are any topics you’d like her to write about let us know in the comments.

Cerebra surfboard goes global

The surfboard designed by our Innovation Centre especially so that disabled children can experience the thrill of the ocean, is making waves on the other side of the world in Japan.

The team at CIC designed the surfboard in partnership with Roger Cooper for children with limited mobility and brain conditions. It allows wheelchair-bound adrenaline junkies to get out of their chairs and onto the water. The tandem design includes a supportive seat for the child and plenty of space on the back for an experienced surfer to steer it in the right direction. They have been a great success providing endless hours of fun to thrill-seeking children who could not otherwise experience the benefits and thrill of catching waves.

Following its successful launch in 2016 the board has been popular across the UK, and now, the world. Cartan McLaughlin, an Irishman living in Japan, bought a Cerebra Surfboard for his own organisation called Sean’s Club. Sean, Cartan’s son, is 10 years old and has Down’s Syndrome and Sean’s Club is dedicated to helping children with Down Syndrome reach their full potential.

They have just held a launch event on Tatadohama Beach in Shimoda, Japan which was a huge success. Cartan McLaughlin said: “It was amazing! A brilliant day. Can I get another board? Many Thanks to the Cerebra Team and especially to Dr. Ross Head – Associate Professor at the University of Wales Trinity Saint David (UWTSD)”.

Dr Ross Head explains that the surfboard is essentially a very large, purpose designed and built board, 12ft long, 30 inches wide and 6 inches deep. This gives it the flotation and stability required for the bucket seat to be positioned on top. The seat is attached via an adjustable laser-cut aluminium wedge which allows the seat to be positioned and angled correctly. This can be altered on the beach between users; the heavier the user, the further back the seat can slide to enable the board to glide smoothly at the correct angle.

To date there are Cerebra Surfboards in Aberavon and Caswell in south Wales, Cornwall, and the Isle of Wight with The Wave Project, one in Larne in Northern Ireland, and now one in Japan. Cartan plans to add another two boards this year, and five in 2019.

Dr Head commented:  “We are so happy and so proud that our surfboard has brought happiness to another bunch of children and to be so far away on such a beautiful sandy beach in Japan adds a magical element to the story. The surfboards are a real work of art and very time consuming to build by the whole team, including Roger Cooper who shapes the board itself. Cartan has already asked if he can order another!”

The team at the Cerebra Innovation Centre are dedicated to designing and making bespoke products that enrich a child’s life, giving them new experiences that wouldn’t otherwise be possible. If you have a challenge for them, get in touch at [email protected]

Eleven year old Alex rides the waves on a surfboard designed by our Innovation Centre

Alex having a great time surfing at The Wave Project

The team at the Cerebra Innovation Centre are dedicated to designing and making bespoke products that enrich a child’s life, giving them new experiences that wouldn’t otherwise be possible.

Created in partnership with Roger Cooper, our surfboard was designed for children with limited mobility and brain conditions. It allows wheelchair-bound adrenaline junkies to get out of their chairs and onto the water. The tandem design includes a supportive seat for the child and plenty of space on the back for an experienced surfer to steer it in the right direction. They have been a great success providing endless hours of fun to thrill-seeking children who could not otherwise experience the benefits and thrill of catching waves.

The latest to try one of the boards was 11 year old Alex who has quadriplegic athetoid cerebral palsy. Alex is from Eastleigh in Hampshire and was on holiday with her family in south Wales when she took part in a session organised by The Wave Project.

Following Alex’s session her mum Charlene told us: “Thank you so much.  Alex absolutely loved it and even asked if we could move to South Wales so she could surf more often. The photos of the day are amazing and, to be honest, brought a little tear to her eye. To watch her take part in something we thought she would never be able to access is just incredible and we really cannot thank you all enough.”

The Wave Project brings people together through surfing. Their evidence-based surf therapy programme is proven to help young people feel less anxious and more positive. They also run beach school projects to help children feel more engaged in education. Working with partner organisations and some amazing volunteers they are changing lives together.

Holly Sayce, South Wales Coordinator at The Wave Project said: “The boards have been essential to us as a charity in making our service fully inclusive of all abilities and disabilities. Used alongside our beach wheelchairs we can offer young people with mobility issues the chance to participate in our surf therapy courses or one-off private sessions.

The board most recently given to our Cymru project by Cerebra was used during our summer sessions and even on a chilly day at Aberavon beach just last week. We are looking forward to our next surf therapy year starting in Spring 2019 to see even more young people use the board and take part in our sessions.

Kindly stored by one of our partner surf schools, we are able to take the board to both of our delivery locations at Aberavon and Porthcawl. We now have three amazing Cerebra boards across our UK projects allowing young people in many locations to access surf therapy and experience the many benefits.

We are super grateful to Cerebra for this amazing piece of kit and for their determination and enthusiasm around improving accessibility for children and young people.”

Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible.  At Cerebra we believe that every challenge can be overcome.

Our Innovation Centre is a partnership project with the University of Wales Trinity St David.