Alissa wins Good Neighbour/Volunteer Award

Alissa with her award

Alissa with her award

We are delighted to announce that Alissa Elsaesser has been recognised by the Carmarthen Journal for the great work she does volunteering and raising money for us.

23 year old Alissa Elsaesser from Felin Wynt near Cardigan was born with Down’s Syndrome, but she has never let anything hold her back and she is always eager to help those in need.

Alissa has just begun to live independently having moved into her own flat in Cardigan. She studied at Pembrokeshire College and enjoys many hobbies including singing, cooking and even skiing! As well as having a hectic social life, Alissa also volunteers at Carmarthen based charity Cerebra, who support children with brain conditions, like Down’s Syndrome.

For the past seven years Alissa has spent her holidays volunteering at Cerebra, helping with the administration of the charity’s two raffle draws that take place every year. She is a helpful, friendly face around the office and very much part of the team at Cerebra.

In 2015 Alissa went the extra mile by taking part in the London British 10k run to raise money for the charity. Running the race was a big challenge for Alissa but she trained hard for her challenge, motivated and encouraged by the messages of support from the local community and the donations that started pouring in. She also loved becoming a local celebrity, thoroughly enjoying all the attention from local media. Alissa raised over £2000 in personal donations with an incredible £50,000 raised by the charity through a telephone campaign.

Alissa at 10 Downing Street

Alissa at 10 Downing Street

Alissa has attended several prestigious charity events, including one at 10 Downing Street hosted by Samantha Cameron, where she helped to raise awareness of the charity and its work. Her bright, cheerful, positive outlook shines through and undoubtedly helps her achieve her aim of being able to help other children and young people with brain conditions.

Alissa was presented with her award at a glittering ceremony on 23rd September and thoroughly enjoyed her evening, dancing till the small hours. Everyone at Cerebra is incredibly proud of Alissa and would like to thank her for everything she does for us.

The Earl of Wessex to officially open UWTSD’s ALEX Building

The ALEX Building

The ALEX Building

Cerebra and the University of Wales Trinity Saint David will welcome The Earl of Wessex to the University’s Swansea College of Art and Design ALEX Building on Thursday, September 29, to officially open the Building.

The Earl of Wessex will be greeted and welcomed by Professor Medwin Hughes, DL, UWTSD Vice-Chancellor, before embarking on a tour of the building, where he will meet staff and students.

His Royal Highness will also visit The Cerebra Innovation Centre (CIC), which was established in 2004 as a partnership between the University and Cerebra, a charity working with brain injured children. From its base in ALEX, the centre designs and manufactures individual products to assist children living with serious life-limiting conditions. Profits from commercialised products are fed back into CIC’s R&D activities.

The visit will conclude with the unveiling of a plaque by The Earl of Wessex to officially open the ALEX Building.

Dr Ian Walsh, Dean of UWTSD’s Swansea College of Art and Design said: “The visit by The Earl of Wessex to the ALEX Building marks the end of a journey which started in 2006. Over the last 10-years this magnificent historic building has been transformed. Its original vision as a beacon of excellence has been restored and once again it occupies centre stage as a seat of creative learning in the heart of Swansea.”

Chris Jones, CEO of Cerebra, said: “The Cerebra Innovation Centre (CIC) based within the ALEX building is an initiative created from Cerebra’s partnership with the University.  We created the centre in order to provide high quality, innovative product solutions to help the families of children with a variety of brain conditions. Cerebra is a national charity for brain injured children and the CIC forms an extremely important part of our work.  Innovative product solutions are all about discovery. There is a certain magic in that and Cerebra is all about joining with families in order to take that journey of discovery. We listen to families, face up to their challenges, believe that for every challenge there is a solution and then discover that solution together. The Cerebra Innovation Centre epitomises that philosophy. It truly is a great innovation in itself.”

CIC full mainThe ALEX Building plays host to a number of important centres of excellence. It provides state-of-the-art accommodation for Wales’ oldest Art Foundation Programme. UWTSD is the only University in Wales still running its own in-house art foundation which remains a key point of entry to Swansea College of Art.

Swansea Bay has the largest cluster of independent architectural glass practitioners in Europe. The Architectural Glass department at UWTSD, which celebrates its 80th anniversary in 2016/17, is unique in the UK and has a truly international reputation. Supporting the creative industries is fundamental to Swansea College of Art’s mission. Within the ALEX Building this is seen clearly in the work of the innovative 3D Computer Animation and Creative Computer Games programmes.

The ALEX building is also home to the University’s Industrial Design department, which include the only Automotive and Transport Design programmes in Wales plus the award winning Product Design programmes.

Books in the library on emotions

This month we have a list of the books in our library on emotions.

Emotions:

  • L6626 & L6664 The Incredible 5-Point Scale: assisting students in understanding social interactions and controlling their emotional responses by Kari Dunn Baron
  • L6460 Children with Social Emotional and Behavioural Difficulties and Communication Problems: there is always a reason by Melanie Cross
  • L6416 & L6530 Help Your Child or Teen Get Back on Track: what parents and professionals can do for childhood emotional and behavioural problems by Kenneth H Talan
  • C0208 PECS Cards ‘Feelings and Emotions’
  • C0114 All Kinds of Feelings by Emma Brownjohn

Fear:

  • C0130 Exploring Fear with your Child by Ilene L Dillon

Anxiety:

  • C0212 The Panicosaurus: managing anxiety in children including those with Aspergers by K I Al Ghani
  • L6422 Exploring Feelings: cognitive behaviour therapy to manager anxiety by Tony Attwood
  • L6241 Helping Your Anxious Child by David Lewis

Disappointment:

  • C0211 The Disappointment Dragon: learning to cope with disappointment for all children and dragon tamers including those with Aspergers by K I Al Ghani

Anger:

  • C0157 A Volcano in my Tummy: helping children to handle anger by Eliane Whitehouse
  • C0131 Exploring Anger with your Child by Ilene L Dillon
  • L6421 Exploring Feelings: cognitive behaviour therapy to manage anger by Tony Attwood
  • L6437 Anger Management: session plans using strength based solutions by E A Morris
  • C0176 & C0245 The Red Beast: controlling anger in children with Aspergers by K I Al Ghani

Mindfulness:

  • L6497 The Rough Guide to Mindfulness by Albert Tobler
  • L6522 Mindfulness Therapeutic Care For Children by Joanna North
  • L6519 Mindfulness: a practice guide to finding peace in a frantic world by Mark Williams

Also, many books on specific conditions will also have individual chapters on the emotional effects of that condition. If you would like any advice on which books to choose, please contact Jan the Librarian on 0800 32 81 159 or by email at janetp@cerebra.org.uk.

Mair Elliott – So I Did It!

Mair on her travels

Mair on her travels

We share Mair Elliott’s latest blog on living with mental illness and autism. In this post Mair shares her experiences while travelling abroad this Summer.

“So I did it! I managed to not only survive, but to experience and enjoy travelling to its full extent (low points included).

To many travelling around Canada for roughly 6 weeks might seem like no big deal, just an extended summer holiday. But for someone like me it is a momentous achievement. If you’d have asked me even a year ago of it was possible for me to do something like this I would have said no.

When I say ‘someone like me’ I am referring to someone who on a daily basis faces barriers, someone who consistently has to fight to keep their head above water. Someone that finds the external world confusing and sometimes terrifying. Someone with Autism and Mental health problems.

In the weeks leading up to departure I could feel the anxiety whipping up a storm. Already the idea of a lack of routine for 6 weeks was affecting me both mentally and physically. As we were making final plans a deep feeling of dread and uncertainty was rushing through my veins. Excitement and the need for adventure were also thrown into the emotional cocktail, leading to an overall confusing and overwhelming mixture.

Having made it to Gatwick and flown to Toronto airport I suddenly found myself with my head in a toilet bowl watching my stomach contents spill out of me like a fountain. I was told I wasn’t allowed to fly to our final destination, Vancouver, and so myself and my friend spent the night trying to sleep on the airport floor. It makes a good story, but at the time I was trying to figure out why I had fallen so ill, was it food poisoning? Had I eaten something I was allergic to? Was it a stomach bug? It is only now, nearly a month later, that I’m realising it was probably anxiety.

Staying in hostels was interesting to say the least. I am not someone who can handle close proximity to other people. People I know well, like family and friends, then it’s fine – strangers are another matter. Having said that, I felt I dealt with the hostels in Vancouver, Jasper and Quebec city with some grace and patience. The hostel in Montreal may have been weak point. Being a light sleeper would be an understatement for me, so when we were in a dorm with a lady that snored louder than a horse with a cold I may have lost my temper. I removed myself from the situation before I blew my top, but staying in the hostel was no longer an option. Luckily, I had stored some emergency money away and I used it to book a hotel room for myself and my friend for the remainder of our time in Montreal.

There were sleepless nights (thank the pharmaceutical industry for Zopiclone!), lack of an eating routine, stress, anxiety, generally feeling unwell a lot of the time and a few times I just wanted to fly home. You may ask why I would put myself through all of that, or was it even worth it. And in truth, it was difficult, but my god it was worth it. All of the negative things I experienced were nothing to the places I saw, the beautiful scenery, the great stories and adventures, the interesting people I met, the magnificent creatures I witnessed and the sheer achievement of knocking down those barriers and proving my doubts and anxiety wrong.

I am so proud of myself, especially looking back on where I started. Almost exactly three years before we flew out I was discharged from the Psychiatric unit. In those three years I have achieved more than I ever thought possible, from creating the S4C and ITV programme with the team down in Cardiff, speaking at events of all shapes and sizes, becoming a trustee of an amazing charity, to learning how to look after myself and manage my mental health problems.

I am not prepared to allow the challenges I face to stop me from doing the things I want to do. I am willing to put the work and effort into overcoming the barriers which potentially could disable me. I also have the patience and endurance to survive the more difficult times. After being so unwell, having been incapable of looking after myself, having not been able to see how truly beautiful this world is and having contemplated mortality from the darkest of corners, I am more aware than ever that I only get one life – I am not going to let those demons which once controlled me to ruin or take my life away from me. And I hope that I can prove to anyone who faces difficulties, whether it be Autism related, mental health problems, or even just day to day issues, that firstly with hard work, perseverance, bravery and some grit you can overcome any barrier you face. And secondly, things can and do get better.

It’s onwards and upwards for myself, the next challenge is completing a year long college course. And of course, I will be doing a few campaigning bits and bobs in between, including speaking at a reception in the House of Lords in October”.

This blog post was originally published at Mair Elliot: Living with Mental Illness and Autism

You can read more of Mair’s articles here.

CP and Me

Sallie

Sallie

We are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article sixteen year old Sallie tells us her story of living with cerebral palsy (CP).

“When people say physical disability, most people think that this means someone who uses a wheelchair. This isn’t always the case. I’m Sallie, and I suffer from mild cerebral palsy. You might not understand what that is. It’s basically a form of muscle tone. The muscles in my ankles are tighter than most people’s which means that my feet turn in making it hard to walk.

Looking at me, it might seem that I don’t look that disabled. But it is obvious when I walk that there’s something wrong. My toes turn in as I walk, and my ankles are weak on one side and stiff on the other which make it incredibly hard to move. I have very little flexibility in my ankles, and this means I can’t keep shoes on. Unlike a normal girl of my age, I can’t wear slip on shoes or high heels because my balance is poor. This has always been the case – so I’m used to it. We don’t know if this is anything to do with my condition but my feet have always been really small – a whole size apart. I’m lucky if I can fit into a size three.

I’m by far not the normal person. Due to my increased muscle tone, I didn’t walk until I was around two and a half. I was lucky, though. Due to my specialist physiotherapists, I was able to teach my feet to stay down so I could walk on the whole of my foot rather than the toes like most people with cerebral palsy. This is why I didn’t walk until I was over two.

My CP made school quite difficult. I was more mobile then than I am now. I was quite a tomboy and preferred to try playing football with the boys. They let me play, but my slow speed meant I was often left out, unintentionally. I was unable to run around with the others which made making friends really tricky.

2010 came and I had an operation on my feet to try and release the tone in my muscles to improve my walking. I was confined to a wheelchair for two months, unable to do anything myself. But, if it hadn’t been for my surgeon, I wouldn’t be able to walk the way I can now. I have lots of physiotherapists, surgeons and paediatricians whose work has allowed me to get the best I can out of life.

I often got clapped just for just attempting to run at sports day – I got the pity clap. Most people thought I couldn’t do sport – but I proved them wrong. In 2010, shortly after my operation to split my tendons, I took up swimming with the Gloucester City Para Swimming Team. To date, I am now a six-time national qualifier, four-time international qualifier and double British Record Holder in the 4x50m 34 point medley and freestyle relays.

This is truly a case of I can do it – not what I can’t do. I proved people wrong – disability does not mean you can’t do sport. I have a dream to compete in the 2020 Tokyo Paralympics, and I will keep working hard to reach that goal. If you have a disability, you are not a sub-human, you are a superhuman”.

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.

Becca’s fab rocket design!

Becca

Becca Davies recently joined our Innovation Centre team for a month long internship. Becca wanted to gain some design experience before going on to study 3D design at the University of Northumbria in Newcastle.

We gave Becca the task of developing our medical device holder. Using recently received family feedback, she went on to create this fun but functional rocket shelving unit to hold all manner of medical equipment at the bedside.

Becca told us:

Rocket Shelves

“My time with CIC has been invaluable! The guys that work here and the families they help day in and day out have been a massive inspiration to me. Not only have they been an endless source of knowledge and talent to learn from – boosting my skills and competency as a designer. But they have also taught me about the great things that can be achieved through product design – happiness, excitement and making what people with disabilities once thought was unreachable, reachable.

I worked closely with Anna, mother of Osian to realise the design and form of my Rocket Medical Stand. She needed it to organise Osian’s everyday things so I designed it to be accessible and open, easing the interaction between herself and the equipment. Alongside this I wanted the stand to bring a little extra joy to their everyday lives hence the out-of-this-world rocket form!”

Good job Becca – and good luck with your studies!

If the Innovation Team can help you with any design issues, just get in touch here.

A Father and Teacher’s View on Inclusive Education

University of Warwick logoIn the first of a series of articles Olivier Huyghe considers inclusive education and whether it works.

Olivier is an SEN Teacher developing Inclusive Education and a Family Research Ambassador Project Member from the Cerebra Family Research Group at the University of Warwick.

What is inclusive education and does it “work”?

As a teacher and as a father of a child with Downs Syndrome who has special educational needs, I have always been interested in inclusion and how to make sure all pupils have access to an education adapted to the way they learn best.

I have taught in mainstream secondary schools, in Secure Training Centres for teenagers, in the mental health unit of a hospital as well as in different special schools. This has given me a broad experience of different teaching environments, especially with a focus on teaching children with special educational needs (SEN).

In a series of short pieces, I would like to share with other parents my personal experience, and also my insight from research and professional practice. This first piece focuses on what is inclusion and whether it works, according to research evidence. I am sure this is a question that goes through the minds of many parents, especially those who have started thinking about schools. In the follow up article, the focus will be on what ‘good’ inclusion should look like.

For a long time, parents of children with disabilities or SEN were encouraged to send their children to “institutions” or special schools when they were of school age. More choices are now available such as those in the article Choosing a school for a child with SEN, and children can access their local schools through inclusive education.

The legal framework for inclusive education

In England, the discussion of integration and inclusion started around the time of the civil rights movements of the 1960s .

More recently, in 2001, the Department of Education (DfE) published a statutory guidance – “Inclusive Schooling: Children with Special Educational Needs” providing practical guidance on how to offer inclusive education for children with special needs in mainstream schools.

The guidance listed the principles of an inclusive education service as:

  • Inclusion is a process by which schools, local education authorities and others develop their cultures, policies and practices to include pupils.
  • With the right training, strategies and support nearly all children with special educational needs can be successfully included in mainstream education.
  • An inclusive education service offers excellence and choice and incorporates the views of parents and children.
  • The interests of all pupils must be safeguarded.
  • Schools, local education authorities and others should actively seek to remove barriers to learning and participation.
  • All children should have access to an appropriate education that affords them the opportunity to achieve their personal potential.
  • Mainstream education will not always be right for every child all of the time.
  • Equally, just because mainstream education may not be right at a particular stage it does not prevent the child from being included successfully at a later stage.

In 2014 (updated in 2015), a new Code of practice has been published: “Special educational needs and disability code of practice: 0 to 25 years, Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities”. It sets a broader set of rules and guidance that parents can use to make sure their child can access the most appropriate educational provision.

The advantages of an inclusive education

Research has examined the effects of inclusion for children with SEN and those without. For children with disabilities and/or SEN:

  • Academic achievements are higher and pupils make greater progress in inclusive settings.
  • Inclusion provides a more stimulating environment with good role-models (academic, social and behavioural).
  • It can develop assertiveness, confidence and self-esteem.
  • Pupils feel part of the local community and valued as individuals in and out of school.
    They are more likely to move to secondary education.

For other pupils in the school who do not have SEN:

  • Inclusion changes children’s attitudes towards difference and disability.
  • It develops acceptance and appreciation of others.
  • Supporting peers’ with SEN in the context of peer support can increase non-SEN pupils’ academic achievements and self-esteem.
  • Repeated studies have shown that there is either no effect or there is a positive effect on the academic achievements of pupils without SEN in inclusive classrooms.

For the school as a system:

  • Inclusion supports school development: by understanding and responding to individual learner’s educational requirements and entitlements (for example some children need more time to learn than others). It leads to the restructuring of school cultures, policies and practices so that they respond to the diversity of all students. Inclusion gives opportunities for enriching learning and for education systems to embrace change and be more responsive to individual differences.
  • Diversity in education should be a reflection of diversity in society. It promotes inclusion in society and therefore helps fight discrimination.

While research is of course important for measuring what the impact of inclusion as a practice is, inclusion as a policy rests on moral imperatives and the way we – society – views difference and disability. Thomas (1997) suggested that “arguments for inclusion should focus on philosophical and ethical principles of equality”. He states: “the true cost of segregation is the stigmatisation and alienation of those people who would otherwise have been able and willing to take a fuller part”.

To conclude

Obviously developing access to inclusive mainstream education is a first step, but it is important to focus on the outcomes. Inclusive education is about creating more efficient, child-centred and flexible education systems, leading to better learning outcomes for all children. Achievements and acquiring skills for life should also be a focus of an inclusive mainstream education. Without positive outcomes and achievements, access has little value.
The existence of a legal framework and guidance is a good starting point of reference but does it guarantee an effective implementation of an inclusive education environment?

My informal discussions with parents who experienced inclusive education suggested that being included leads to many positive outcomes but it often requires close follow-up on what schools are doing and regular meetings to suggest improvements. On some occasions, parents have found it easier to opt for a placement in special schools because of “negativity” from their local mainstream school.

But this is an important discussion for another day! In my follow up article ‘From access to practice: what does good inclusion look like?’ I will share with you my reflections on the actual practice of inclusion in today’s schools.

References

Lyndsay, Geoff (2007) Educational psychology and the effectiveness of inclusive education/mainstreaming. British Journal of Educational Psychology, Vol.77 (No.1). pp. 1-24. ISSN 0007-0998

Sermier Dessemontet R., Bless G. & Morin D. Effects of inclusion on the academic achievement and adaptive behaviour of children with intellectual disabilities.

Thomas G, “Inclusive schools for an inclusive society”, British Journal of Special Education,Volume 24, No. 3 (September 1997)

Inclusive Schooling: Children with Special Educational Needs –  www.gov.uk/government/uploads/system/uploads/attachment_data/file/283623/inclusive_schooling_children_with_special_educational_needs.pdf

Special educational needs and disability code of practice: 0 to 25 years  www.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

Inclusive schools for an inclusive society – www.academia.edu/619098/Inclusive_schools_for_an_inclusive_society

Two Cerebra Parent Guides Highly Commended by BMA

Two of our parent guides have been Highly Commended at the 2016 British Medical Association (BMA) Patient Information Awards. We were delighted to receive the awards for our Parent Guides on ‘Returning to School: A teacher’s guide for pupils with brain tumours, during and after treatment’ and ‘Anxiety: A Guide for Parents’ at a ceremony on 12th September.

We are determined to give every family that includes a child with a brain condition the chance to discover a better life together. By listening and working with families we are able to use that information to inspire the best research and innovation before helping them to put the knowledge into practice so that they can discover a better life together.

The British Medical Association’s Patient Information Awards were established to encourage excellence in the production and dissemination of accessible, well designed and clinically balanced patient information.

Tracy Elliott, Head of Research at Cerebra said: “Parents regularly tell us that they have difficulty in getting reliable information on their child’s condition, especially for those conditions that are less common. Providing clear accessible information that translates research into practical support and advice for parents is a priority for Cerebra. We are delighted to receive BMA recognition for our work”.

We produce a range of Parent Guides on a variety of topics which are available free of charge from our website. As a certified member of the Information Standard since 2013, parents and professionals can be confident that the health and social care information we produce is of the highest standard.

Returning to School Guide

The ‘Returning to School’ guide is intended to help teaching professionals, as well as hospital oncology paediatric departments and parents and carers, to support a pupil with a brain or spinal tumour who may be absent from school for some time, or may have sporadic attendance with a very serious illness. It explains what the pupil may be going through both medically and psychologically and offers practical strategies for ensuring supportive reintegration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

The full guide is supported by a Facstsheet pinpointing strategies to use where memory and cognition may be impaired, and two infographics on ‘What to do if a child is diagnosed with a brain tumour’ and ‘What to do if a pupil with a brain tumour becomes palliative and may die’.

A number of prominent health professionals from The Royal Marsden NHS Foundation Trust were involved in developing this resource, namely: Dr Lesley Edwards, Consultant Clinical Psychologist; Dr Lynley Marshall, Oak Foundation Consultant in Paediatric Oncology Drug Development; Gabriella Haeems, Assistant Psychologist. The resource was reviewed by Dr Susanna Waern, Principal Clinical Psychologist.

Anxiety Guide

Our ‘Anxiety: A Guide for Parents’ was developed to give up to date information on how to spot the signs of anxiety and anxiety disorders and examine what can be done. Part one describes the common signs of anxiety and specific anxiety disorders. Part two describes the ways professionals assess anxiety in children with intellectual disability, and part three gives guidance on helping your child reduce feelings of anxiety and gives some examples of specific disorders associated with anxiety.

The resource was written by Dr Jane Waite, Postdoctoral Research Fellow at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham; Dr Hayley Crawford, Research Associate at the Centre for Research in Psychology, Behaviour & Achievement at Coventry University; Rachel Royston, PhD student at the University of Birmingham. The guide was peer reviewed by Professor Chris Oliver of the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.


 

These publications will now be held by the BMA library and recommended for parents and professionals. Cerebra were one of the smallest charities recognised by the BMA in this way. Our publications will sit alongside resources developed by large well established charities such as Marie Curie, Macmillan Cancer Support, The Children’s Trust and The British Heart Foundation, as well as resources developed by various NHS Trusts. Our thanks go to everyone involved in these projects.

The full range of Cerebra guides can be downloaded free of charge from our website.