Cerebra Innovation Centre Open Afternoon

The team and the equipmentOn 15th June we held an open afternoon at the Cerebra Innovation Centre (CIC) to showcase some of the amazing designs produced by our talented team.

Disabled children often encounter barriers to taking part in activities that non-disabled children take for granted. Our Innovation Centre designers are inspired by the children we work with to come up with brilliant ideas, that aren’t currently available, to help children have fun, play, discover and take part.

The Cerebra Innovation Centre is based at the ALEX Design Exchange in the heart of Swansea, part of the University of Wales Trinity St David School of Art campus. The Open Afternoon at CIC was an opportunity to talk to guests about the Innovation Centre’s work as well as give a tour of the first class facilities that are available to the team as part of this collaborative project between Cerebra and the University of Wales Trinity St David (UWTSD).

Guests were welcomed by James Moxey, Director of CIRIC (Creative Industries Research and Innovation Centre, UWTSD) and given an overview of Cerebra’s work by Chris Jones, Chief Executive of Cerebra. Rob Jones, who will shortly be competing in the Cardiff Triathlon with his daughter Poppy, spoke movingly about the difference CIC has made to Poppy’s life by enabling her to take part in this challenge (read more below).

Dr Ross Head, Product Design Manager at CIC, spoke passionately about the positive difference CIC makes to the lives of children with brain conditions and explained, “I have had the opportunity to make a difference to fellow human beings simply by doing what I love to do. As a product designer, it is my passion to solve problems by the creation of a physical products, and to do that for such a worthy cause really does give me fulfilment in my work.  As CIC work within UWTSD, we are immersed in a creative culture which drives the team to design beautiful yet functional products that help children and supply them with products that promote their individuality rather than highlight their differences”.

Guests also had the opportunity to take a tour of the Innovation Centre’s office, workshop and machine room which illustrated the journey from design stage to fully working bespoke products.

Some of the Innovation Centre’s recent designs include:

Poppy's triathlon boat

Poppy’s triathlon boat

‘Poppy’s Dream’ which has been a huge challenge for the team who have designed and made the equipment needed to take Rob and Poppy to the finish line of the Cardiff Triathlon on 26th June. Eleven year old Poppy has cerebral palsy and is determined not to just take part, but to win!

 

 

Kai taking to the waves

Kai riding the waves

The ‘tandem surf board’ with its supportive bucket seat that allows disabled children to surf whilst being controlled by a trained surf instructor, and the ‘Surf Access Vehicle’ which enables wheelchair bound children to get to the water’s edge.

 

 

Fitting the helmet

Fitting Tommy Lee’s helmet

A bespoke riding helmet for 16 year old Tommy Lee so that he could fulfil one of his dreams to go horse riding with his friends. Tommy Lee’s unique head shape meant that a standard riding helmet would not fit.

 

 

Designs by the team have also been developed and made commercially available through retailers. After being contacted by a parent who needed help to get out and about in the snow with a wheelchair, the team designed a sledge with a supportive seat and harness built in. The sledge proved so popular that CIC collaborated with Gordon Ellis & Co to launch their very first commercially available product.

The GoTo is a postural support seat developed by Firefly and Cerebra that lets children participate in those moments that make family life special. Families worldwide use their GoTo Seats in supermarket trolleys, on planes, swings and Granny’s dining chairs. They make daily tasks easier, and mean kids don’t need to miss out. It gives a little piece of independence that lets them see the world from a new perspective and feel they’re at the heart of the action.

All of the Innovation Centre’s designs are in response to direct requests from parents and carers who are struggling to find the piece of equipment that would make their child’s life easy more, more inclusive and more fun. All of the designs are made free of charge for families. So if you would like to challenge the team to find a solution for your family please get in touch with them at cic@cerebra.org.uk.

Anxiety Disorders

Our three part Cerebra Anxiety Guide: A Guide for Parents has been developed to give up to date information on how to spot the signs of anxiety and anxiety disorders in children with an intellectual disability and looks at what can be done to help.Our three part Cerebra Anxiety Guide: A Guide for Parents has been developed to give up to date information on how to spot the signs of anxiety and anxiety disorders in children with an intellectual disability and looks at what can be done to help.

This is the second of a series of articles taking extracts from the Guide and will look at Anxiety Disorders. The full Anxiety Guide can be downloaded free of charge here.

Everyone experiences anxiety from time to time, particularly in response to difficult or stressful situations. However, this anxiety usually reduces with time or once the stressful situation is over. For example, children may experience anxiety when starting a new school but this gets better once they are used to their new surroundings. Anxiety starts to become problematic when it gets in the way of everyday life, when there is no obvious reason for the anxiety, when it is out of proportion to the threat of a situation, or when it continues for a long time.

Anxiety Disorders

When anxiety is identified as being problematic, a professional may diagnose an anxiety disorder. In the general population, anxiety disorders are known to affect around 3 in 100 children aged 5-16 years. In comparison, around 3-22% of children with an intellectual disability meet criteria for an anxiety disorder. Researchers are still trying to agree on these estimates, however, it is generally believed that individuals with intellectual disability are more likely to experience anxiety.

There are a number of different types of anxiety disorders, however, it is important to remember that every person is different and there are often cases where a person’s symptoms do not fit exactly with a specified disorder category, particularly when they have an intellectual disability. Therefore, a professional will sometimes diagnose an anxiety disorder without assigning a specific category. Some of the anxiety disorders are described below:

  • Specific Phobias: The person has a very specific fear, such as a fear of objects, events or situations. This could be a fear of animals, doctors or heights for example. A person with a specific phobia will be anxious about situations where they may encounter the feared object or situation and they will try and avoid these situations.
  • Generalised Anxiety Disorder: Unlike a specific phobia this is a non-specific anxiety about a variety of situations, including events that occur on a daily basis. People may find it difficult to control their anxiety and switch it off. In generalised anxiety disorder the focus of anxiety can change frequently and be quite fleeting.
  • Social Anxiety Disorder: A person is fearful when faced with everyday social situations and settings, so experiences anticipatory anxiety about being in these situations. Often individuals will try to avoid social situations completely or may withdraw
  • Panic Disorder: A person experiences attacks of extreme anxiety which occur unpredictably. During an attack a person’s heart rate may increase and they may feel as if they are struggling to breathe. This is often accompanied by anxiety of dying or losing control. A person who has panic attacks may experience anxiety about having another attack and avoid situations in which they have previously occurred. Panic attacks are fairly uncommon in children.
  • Agoraphobia: A person experiences fear of open or public places that occurs across at least two settings. It is usually an anxiety of situations where escape would be difficult or embarrassing. Therefore, the person may avoid these places.
  • Illness Anxiety Disorder: Individuals have heightened awareness and are anxious about having an illness despite the absence of a diagnosable condition. They may spend a long time checking out the possibility of having a health condition. This checking behaviour is part of the maintenance of the difficulty because it leads to a short-term reduction in anxiety; however, the person continues to believe that continuous checking is required to avoid a serious health condition.
  • Obsessive Compulsive Disorder (OCD): The person is anxious about causing harm to themselves or others which leads to obsessive thoughts and compulsive rituals that they believe will reduce this threat (e.g. repeatedly washing hands or counting in specific patterns). These compulsions and rituals reduce anxiety in the short-term but means the person avoids being exposed to the perceived threat (e.g. germs) so their anxiety does not reduce in the long-term. It is important to remember that ritualistic/repetitive behaviours are often characteristic of people with an intellectual disability and/or genetic syndrome. This may mean that behaviours that look like symptoms of OCD may have other causes.
  • Post-Traumatic Stress Disorder: PTSD develops after a distressing or traumatic event. Examples of this include an unexpected death of a loved one or being in a car accident. The person may experience flash-backs to the event and may try and avoid activities or situations that remind them of the trauma due to anxiety about experiencing these memories.

Anxiety Disorders in Intellectual Disability

The most common forms of anxiety disorders in children with intellectual disability are specific phobias and separation anxiety. Prevalence rates for both these disorders range between 2-18%. Social Anxiety is slightly less prevalent, with rates ranging between 1-5%. Rates for Panic Disorder, Agoraphobia and Generalised Anxiety Disorder are all reported to be below 2%. Around half of children who have an anxiety disorder are also diagnosed with a mood or other disorder. However, it is not yet fully understood how anxiety and other disorders are related and whether having one type of disorder increases the likelihood of another.

To read more about anxiety disorders, spotting the signs of anxiety, assessment and diagnosis and what can be done to help, download the full guide here.

John Prepares to Take on Mountain Challenge

John Boyd ready to take on his mountain challenge

John Boyd

John Boyd is preparing to tackle Wales’ highest mountain in order to raise money for Cerebra.

The 48 year-old hairdresser from Stroud will be taking part in the “Man vs Mountain” challenge which involves running up and down Snowdon, Wales’ highest mountain. It’s a full day challenge, covering 22 miles with jumping and swimming obstacles along the way. Definitely not for the faint hearted!

John said: “This is one of the toughest challenges of my life! Knowing the money I raise will be used to improve the lives of children with brain injuries throughout the UK is the best part of all. Cerebra makes a real difference to the lives of children and families they work with.”

John will be taking part in his challenge on 4th September and you can sponsor him through his Just Giving page.

If you would like to find out more about how you can take part in a similar event to raise money for Cerebra, please contact jessicat@cerebra.org.uk or 01267 244222.

Chris Oliver – My Journey into Research: the Boy at the Pillar

Professor Chris OliverProfessor Chris Oliver explains his journey into research as well as the pioneering work of the Cerebra Centre for Neurodevelopmental Disorders.

“In 1981 I was training to be a clinical psychologist at the University of Edinburgh when the seminal documentary “Silent Minority” was aired on ATV. The content was a damning portrayal of abuse and inadequate service provision for children and adults with intellectual disability and was to prove more influential in driving reform than any government report of the day or since. One image in the documentary that has remained with me to this day was of a young boy tied to a pillar on the ward of a Victorian long stay hospital. The reason given for him being tied was that he banged his head very severely and this was how his behaviour was contained. After watching the documentary I made an unspoken commitment to the field of intellectual disability and considered careers in advocacy or clinical service. As I learned more about the field, it became clear to me that one part of the problem that underpinned poor service delivery was a lack of knowledge about how people with the most severe disabilities and difficult behaviour might best be supported and what interventions might decrease disabling behaviours such as self-injury.

Months later I was interviewed for a PhD position at the Institute of Psychiatry by Prof. Glyn Murphy, now at The Tizard Centre. After the interview she showed me around the treatment unit that I would work in for the next 12 years. As she did so, she espoused the same outrage at the documentary that I had felt but also spoke of how scientific method might inform our understanding of the behaviours that the boy at the pillar was showing. The combination of Glyn’s social conscience, scientific rigour and diligence was as inspiring to me now as it was then. Under Glyn’s tutelage, I was encouraged to understand fundamental causes of behaviour from different perspectives and develop new assessment and intervention methods that could be used in clinical practice.

Fast forward thirty five years and my programme of research still focuses on the same behaviours that I began to understand as a raw PhD student. With funding from Cerebra, my research team has been able to describe how genetics, brain development, medical conditions, cognitive profiles, emotion regulation and the environment each contribute and interact to cause difficult behaviours in children and young adults with intellectual disability. We have also tackled new areas such as sleep disorders, overeating, repetitive behaviour, and autism in genetic disorders. We have learned how pain, difficulties with communication, cognitive difference, impulsivity and sensory sensitivity can influence behaviour and we are developing new assessments to ensure these areas are attended to.

The 35 years that have flown by have been characterised by themes that stayed with me from my time as a PhD student. A prominent theme is that I have continued to work with students and postdoctoral research fellows who speak of and are driven by their social conscience, however derived. It is unfashionable in science to mention such a thing but not for us. A second theme has been the licence to study and research fundamental causes of behaviour and generate new information about how behaviours might be treated effectively. This opportunity provided by Cerebra is invaluable and contrasts with the majority of funding opportunities that focus on confirmation rather than innovation and force researchers to pose less ambitious questions rather than break new ground. A third theme has been a commitment to robust evidence and the importance of scientific method or “Data not Dogma” as a friend once printed on a t-shirt for me to celebrate the award of my PhD.

Since we opened the Cerebra Centre in 2008, 40 doctoral students have passed through its doors, each contributing in a unique way to what we know and do. The way we approach self-injury, sleep disorders, repetitive behaviour and a multitude of other problems is very different now to how it was when I watched “Silent Minority”. Further research challenges await us, such as deepening the understanding of the most severe self-injury and intractable sleep disorders, but in the last eight years we have generated a raft of research findings and there are 40 more people with doctoral degrees who can rise to these challenges and that’s got to be a good thing. However, one thing that has not changed is the reluctance of government to convert research findings into mainstream practice. I was reminded of this in 2011, when the BBC screened a Panorama documentary describing abuse and inadequate service provision at Winterbourne View. My mind returned then to the boy I had seen at the pillar, thirty years before.

I have learned two important lessons on my unfinished research journey. The first is that with determination, data and diligence, combined with a team blessed with more than their fair share of smarts, it is possible to change the most difficult behaviour, for most people, for most of the time. The second thing I have learned is that to change the behaviour of government, then in the words of Chief Brody, “You’re gonna need a bigger boat”.”

Prof. Chris Oliver, Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.

What’s Your Story?

communication-poppyAt Cerebra we believe in listening to the families we support and working with them to develop and share information and knowledge.

We are building a resource of blogs or articles written by young people themselves to help us challenge negative perceptions and promote a wider understanding of different conditions.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website.

Our first story was written by Mair Elliot, who was diagnosed with autism aged 15. You can read Mair’s story here.

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk

Sleep Practitioner helps Ella get a Good Night’s Sleep

Ella sleepOur Sleep Practitioner Pattie Everitt has helped another family with their sleep issues.

Nine year-old Ella, who has ADHD, was struggling to get to sleep. Her mum climbed in with her between 7:30 and 8:30 each night but Ella wasn’t falling asleep until about 11pm.

After thoroughly understanding the family’s situation Pattie was able to give the following advice:

  • Avoid exposure to a lot of light up for the two hours before bedtime.  This includes using computers, tablets, T.V., phones etc as they emit a lot of blue light (which stops the sleep hormone melatonin from being released).
  • Try moving her bath time nearer to bedtime/ sleep time so that it is part of her bedtime routine.  Introduce massage if she is ok with this as this can release feel good hormone which might aid sleep.
  • The more relaxed she is the better, so keep bedtime a positive time and avoid confrontation.
  • Try a later bedtime (or 11pm) with the routine in place, and then make this earlier by fifteen minutes each day until you get to a more suitable time.

The family tried out these tips which have had a positive effect and Ella is now settling at around 9:30pm.

Ella’s mum said: “Pattie really helped our family with ideas for Ella’s sleep. Some things that she suggested really surprised me but I followed some tactics and they are working. It’s really helped us to have support. Thank you.”

You can find out more about our Sleep Service here.

Cerebra Annual Quiz Night

Cerebra team

Cerebra team

On 9th June we held our second annual quiz evening at Carmarthen Town AFC’s clubhouse.

The evening was a huge success with teams competing for the coveted title of ‘Cerebra Quiz Champions’ under the watchful eye of estate agent and temporary quiz master Gerald Vaughan.

All of the quizzing subject favourites were covered from sport to entertainment. Some of the rounds had a special twist with one round asking teams to ‘guess the branded product’ and another asking them to guess the Musical from a short piece of music.

It was a closely fought contest with ‘The Red Kite Hot Trivia Peppers’ eventually claiming victory ahead of ‘Let’s Get Quizzical Carmarthen Round Table’.

A delicious supper of pie and mash was followed by a raffle draw and an auction with a huge array of prizes kindly donated by local businesses.

The winning team from Red Kite Solicitors

The winning team from Red Kite Solicitors

The event raised a fantastic £1,800 for Cerebra and the winning team, “The Red Kite Red Hot Trivia Peppers” even donated their £300 winnings back to the charity.

We are really grateful to the local businesses who donated raffle and auction prizes and those who entered teams into the contest. We are also grateful to Gerald Vaughan for giving his time as quiz master and auctioneer for the evening.

Feeling inspired to hold your own quiz? Get in touch with Jess Thomas on 01267 244222 or jessicat@cerebra.org.uk for tips and fundraising materials. She might even let you have a peek at our questions.

Items in the lending library on Communication

Communication help from our library

Communication is a popular topic so we have lots of books on it as well as more practical help like PECS cards and Communication Aids.

Books

  • L1210 Trouble Talking: a guide for parents of children with speech and language difficulties by James Law
  • L6215 More Than Words: helping parents promote communication and social skills in children with autism by Fern Sussman
  • L6238 Communication Issues in Autism and Asperger Syndrome by Olga Bogdashina
  • L6242 The Classroom and Communication Skills Programme by Megan Ahlers
  • L6347 Developmental Speech Language Training Through Music for Children with Autism Spectrum Disorder by Hayoung Lim
  • L6381 Enabling Communication in Autism by Carol Potter
  • L6411 Helping Children to Improve Their Communication Skills: therapeutic activities for teachers by Deborah Plummer
  • L6460 Children with Social Emotional and Behaviour Difficulties and Communication Problems by Melanie Cross
  • L6461 A Pictures Worth: PECS and other visual communication strategies in autism by Andy Bondy
  • L6468 Early Communication Skills for Children with Down Syndrome by Libby Kumin
  • L6485 Small Talk: simple ways to boost your child’s speech and language from birth by Nicola Lathey
  • L6515 Teach Me With Pictures: 40 picture scripts to develop play and communication skills in children on the autism spectrum by Simone Griffin
  • L6532 Rising to New Heights of Communication and Learning for Children with Autism by Carol Spears
  • L6533 Augmentative and Alternative Communication: models and applications for… caregivers and users by Filip Loncke
  • L6540 Developing Communication for Autism Using Rapid Prompting Method by Soma Mukhopadhyay
  • L6546 Social and Communication Development in Autism Spectrum Disorder: early identification and intervention by Tony Charman
  • L6586 Talk to Me: conversation strategies for parents of children on the autism spectrum by Heather Jones
  • L6644 Other Ways of Speaking: supporting children and young people who have no speech or whose speech is difficult to understand by the Communication Trust
  • L6658 Giggletime: establishing the social connection a programme to develop the communication skills of children with autism by Susan Aud Sonders

Audio visual

  • AV6388 Talkabout: social communication skills (DVD)
  • AV6409 ISPEEK at Home: over 1300 visual communication images (CD-ROM)
  • AV6538 Discovery Pathways to Better Speech for Children with Down Syndrome (DVD)

PECS cards

  • C0208 PECS Cards Keyrings: ‘Instructions and Behaviour’ and ‘Feelings and Emotions’

Portable Communication Aids in the sensory library

  • SmartTalk – 8 picture communication aid, recordable
  • Partner 4 Plus – 4 picture communication aid, recordable
  • iTalk2 – 2 button communication aid, recordable

If you would like to borrow any of these or any other books from our library, it is free of charge. Please contact Jan the Librarian on 01267 244203 or janetp@cerebra.org.uk

Charlie Enjoys his new Trike

Charlie on his trike

Charlie on his trike

Cerebra’s grant scheme provides specialist equipment for children with brain related conditions so that they can enjoy life to the full – the same as any child.

Four year-old Charlie recently received a trike through a Cerebra grant and his mum Sarah told us how having the trike has transformed the family’s lives.

“Charlie was diagnosed with IP 36 deletion syndrome when he was two years old after a particularly astute paediatrician noticed some signs of the condition in Charlie.

His development was delayed and he missed many of his milestones so we knew that he needed to be checked.

Charlie is non-verbal and has severe developmental delay but he is still the happiest child. Even though he can’t communicate verbally, he still has great social skills and loves being out and about.

We are quite an active family and used to enjoy going out for bike rides and wanted Charlie to be able to enjoy the same freedom. Just because he has special needs – it doesn’t mean that he shouldn’t be able to enjoy the same activities as any other child!

We looked at getting Charlie a specialist trike from Quest 88 but the model that was suitable for Charlie’s needs was £2,300! That’s when we approached Cerebra for a grant to help towards the cost of the trike.

Since receiving the trike, Charlie has gone from strength to strength! It took him a little while to get used to the pedalling motion but now there’s no stopping him. He even giggles when we overtake people which is a joy to see!

Although he can’t communicate verbally, Charlie has learned a Makaton sign for bike and uses the Makaton sign for ‘more’ whenever we stop cycling to indicate we need to keep going! He will also pick the PECS symbol for bike when choosing which activity he would like to do. Then the normal sentence it a lot! It’s great to have something “normal” that we can all do together.

As well as the emotional benefits, Charlie’s Physiotherapist told us that the bike would develop his coordination and help to strengthen the muscles in his legs and core as he gets more independent with the pedalling motion. I can certainly see how the bike gives him lots of opportunities to develop physically.

Even though we steer Charlie when he is on the trike, the controls to do this are at the back so as far as Charlie knows, he is in control. This has greatly improved his confidence and has given him a little taste of independence – something that is invaluable.

We can’t thank Cerebra enough for the difference that having the trike has made for Charlie – and for the whole family.”

Angelicus Choir become Ambassadors for Cerebra

Ryan and Dylan with the Angelicus choir

Ryan and Dylan with the Angelicus choir

We are delighted to announce that the Angelicus choir, a group formed from the prestigious Hywel Girls’ Choir and Hywel Boys Singers in Llanelli, have become Ambassadors for the charity.

The choristers were delighted to meet one of the local families Cerebra helps at their Last Night of the Proms concert at Y Ffwrness on 4th June. Four year old Ryan Hooper, who has Down’s syndrome, and his older brother Dylan thoroughly enjoyed the music, singing, and vigorous flag waving! They were also thrilled to meet the girls who sang Ryan’s favourite song, ‘Let it Go’, just for him.

The Hooper family from Kidwelly have enjoyed a well-deserved break at Cerebra’s fully adapted and equipped holiday home in Pembrokeshire. Many families with children who have special needs find it incredibly difficult to find a place to go on holiday that caters for their needs – Cerebra’s holiday home is often the only chance families have to spend quality time together.

Waving the flag at the last night of the proms.

Waving the flag at the last night of the proms.

Mum Vanessa said: “Life can be tough when you live with someone with extra needs. Having the support from Cerebra has been invaluable to us. We, as a family, cherish the opportunity to give back and hopefully raise awareness about the work that Cerebra do and the neurological conditions they support.”

Cerebra are grateful to John Hywel Williams, Jeremy Hywel and the choristers for their on-going support.

The charity’s Ambassadors help to raise vital awareness of the charity’s work.