Head Awareness Week 2016

Thank you to everyone who took part in our first Head Awareness Week!

We know that 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. But we don’t believe there’s any challenge that can’t be overcome.

So we listen to families, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we discover together makes life better. It opens doors to discovering the world.

During our Head Awareness Week we invited everyone to get involved in our journey of discovery by wearing some sort of headwear, sharing the results on social media and making a donation.

The week was such a great success we’ll be doing it again next year so keep an eye out for details.

Go on – be head aware with us!

If you need some inspiration, here are some of the brilliant photos you shared during the week:

 

 

New look for Cerebra!

new-lookWe are delighted to unveil a fresh new look for Cerebra!

Over the past year or so we’ve been taking a good look at our brand. Our brand is everything that comes to mind when people think of us. So we wanted to make sure that our brand is the best that it can be – easily recognised, easily understood and great at attracting support.

Our Vision – what we want

Our vision is that every family that includes a child with a brain condition will have the chance to discover a better life together.

Our mission – what we do

We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

Our key messages

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. But we don’t believe there’s any challenge that can’t be overcome.

So we listen to families, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we find out together makes life better. It opens doors to discovering the world.

It’s an incredibly rewarding journey for everyone involved. Why not be a part of it? You never know what we’ll discover together.

How we look

We have a new visual identity too – a new logo, colours, font, images which all complement our vision and our mission.

cerebra colours

You’ll notice the changes everywhere – our website, social media, in our printed materials and in the way we talk to you. It will take us a little while to make all the changes though – so please bear with us.

We are thrilled with our new look. We hope you like it too and that you’ll join us on our journey of discovery.

Chakotay explores his world

Our grants scheme can help fund equipment and services to help make life a little bit easier and more enjoyable for children and families. The Greening family applied for funding to buy a Hippocampe All Terrain Beach Wheelchair to help their little boy explore his world:

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“Our little boy’s Hippocampe wheelchair came yesterday and was all set up ready for his maiden voyage this morning!

This chair is going to make such a big difference to our lives as we are surrounded by lovely beaches and fantastic woods, all which have been virtually inaccessible as he grew older and bigger and heavier – he is nearly 5 years old now. He was born blind with developmental delay and cannot talk. He also has low muscle tone and cannot walk and therefore has to be carried across the sand or woodland trails – not any more though!

chakotay collage

We took him down to the beach this morning, right up to the shore line where he sat listening to the waves and catching the wind, it was just perfect for him and he loved every minute, the smiles on his face telling you the whole story. He sat in the Hippocampe like a little king, he loves the arm rests and the feel of the big tyres.

We’ve also been to the woods. He loved the noise of the trees rustling and the stream running, as you can see he got so much out of it. This will open our adventurous side and get everyone out and about (not just me!). We also got my grandson Ethan in on the act by pulling the wheel chair on the special harness.

We know he will have so much fun in it all year round and for us , no more heavy lifting or dragging with wheel chairs or buggies.

We can not thank you and your amazing charity enough, this would not have been possible without you. We thank you from the bottom of our hearts”.

Butterflies, Prince Edward and Camp Beds

We catch up with the latest news from our Innovation Centre, designing cool products to help children discover life and have fun alongside their friends.

Butterfly Shelves

butterfly2“How fab is this? Cerebra’s Innovation Centre made my daughter Blisse a portable unit for her equipment ready for when we move to her bungalow. It means when Blisse is unwell I can take her to my bedroom or living room and not worry about having it laid on the floor etc with wires everywhere. It has extra shelves to put other things such a pads and toys. It will eventually also have a pole to attach her feed machine to as well. We love it. Her nurse last night was very impressed with it. Thank you so much to the team who made this and put such a girly stamp on it for us”.

— Laura, Blisse’s mum

Slumber Camp Bed

We’ve been asked many times recently for a product to help with changing children when out and about. Unfortunately this has had us stumped, as we have been unable to design something that we are able to make with the materials and processes (not to mention budget!) available to us. However, we have found a solution that might suit some people. The Freedom Trail Slumber Aluminium Camp Bed is a great little camp bed that folds away to 90x19x9cm but when assembled it is 40cm off the ground and long enough for an adult. Although it requires 5 minutes assembly, it will keep children off of the floor whilst changing. We appreciate that is only goes a small way to helping with a very difficult situation, but hope that it might be of help to some of you.

Prince Edward visits ALEX

Prince Edward, the Earl of Wessex recently officially opened the University of Wales Trinity St David’s Alex Building in Swansea, home to our Innovation Centre. He particularly enjoyed chatting with our team and meeting some of the families that we have helped with our innovative designs. You can read about his visit here and watch a short film of the visit here.

And finally…

Congratulations to Ross Head, Product Design Manager at our Innovation Centre, who has been awarded the title of Associate Professor. So, it’s now Associate Professor Ross Head, Product Design Manager, CIC.   Congratulations Ross!

Jack’s Story

Jack KavanaghHello, I’m Jack. I am thirteen years old. I have autism, along with epilepsy, ADHD and learning difficulties. I attend a special school where there is a mixture of students with autism and other learning difficulties. Let me tell you a little bit about myself.

For many years I didn’t speak. When I eventually did develop language it wasn’t in the way that most people would expect. I would only use two or three words instead of a sentence; often I would take people by the hand and show them rather than speaking because I couldn’t find the right words to say. Most of my language consisted of echolalia (repetition of words made by another person-both immediate and delayed).Today, I speak in full sentences; however, I find it hard to understand what is being said to me. As a result I still sometimes repeat another person’s words or answer ‘yes’ regardless of what the person has just said. The one thing that I do a lot is repeat the same question over and over again. It can be very exhausting to listen to!

When communicating with me it’s best that people don’t bombard me with too much information. This hurts my head and I will respond by either covering my ears, self-harming (such as hitting my head with my fist), or hitting out. Ways that you can help me include:

  • using my name first to get my attention;
  • keeping language simple;
  • using pictures to help me understand things;
  • saying things in the order in which they will happen;
  • telling me what to do, not what not to do (e.g. ‘feet on floor’ rather than ‘don’t jump on the sofa’),
  • and using ‘then’ to help me understand the sequence of events (‘It’s computer, then shower’).

I don’t like change; instead, I like to do things over and over again in the same way. I have many rituals. For example, I will only eat alone, and before I sit down to eat I have to ensure that all the house lights are on, the doors are shut, certain things are put away, the cats are upstairs and under the bed (even my cats are trained to fit in with my various routines) and all ‘faces’ are out of sight. I don’t like seeing ‘faces’ at home and demand that anything with a face on it is put away.

There are many things that frighten me. I don’t like dogs, for instance. When I see a dog I will cover my ears and collapse on to the floor or try to throw something at it. Moving cars frighten me too and I will sometimes try to kick out at them as they pass. This is very dangerous, so I have to have someone with me at all times to keep me safe.

I am a lively, fun lad with boundless energy. I can keep going on very little sleep. I wake up every night and I wake early. For nine years I loved nothing but balloons. My house was full of them, which I loved to squeeze, throw, press against my body and mouth, and line up on the floor in rows. Now all I am interested in is time travel. I love prehistoric time lines and time machines, especially the TARDIS. I have my very own life-like TARDIS at home. It has levers inside, which I really enjoy pressing; in fact, I enjoy pulling and pressing levers so much I have several sets. I also enjoy Minecraft. My Dad built me an amazing TARDIS on Minecraft, complete with levers. I also enjoy moving in and out of the different Minecraft time portals.

I can concentrate for long periods of time on activities that I enjoy. At other times I am easily distracted and constantly on the go. Always, though, it is hard to get my attention. My pursuit of preferred activities means that if it weren’t for my Mum and Dad I would forget to drink, eat or go to the toilet.

One question that my Mum and Dad often get asked is whether I have a special talent. Well, no, I am not a savant. A savant is a person with autism who is exceptionally gifted in a specialised field. These people are actually quite rare! An interesting thing about me is that while I am very good at some things, I find other, easier things difficult. For example, I am very good at sport. I can run fast, swim well and I am good at gymnastics. I have many gold medals! Yet, I cannot perform simple tasks like holding a spoon, knife or fork; I cannot brush my own teeth, ride a bike or do up buttons. Due to my resistance to change, sensory issues and learning difficulties I need help with daily living skills like toileting, dressing/undressing, eating, hygiene tasks (washing, brushing teeth, etc.), and cutting hair and nails.

Anxiety, and managing anxiety, is a real struggle for me. I get anxious for many, many reasons. The social world confuses and overwhelms me. I find it hard reading people’s facial expressions, their tone of voice, the meaning in what they say. I find it difficult to put myself into their shoes. I struggle to make sense of time and I have an inability to wait and to share; therefore, I prefer to play alone rather than with my peers.

Due to my difficulties I can often become frustrated, confused, angry and scared and this can lead to meltdowns. This is different to a temper tantrum. During a meltdown I lose all sense of control and I don’t care whether someone pays me attention or not, or even if my needs are met. During a meltdown I will be destructive, throwing and breaking things; I will also hurt myself and will hurt others. I also have no sense of danger. During one meltdown I tried to jump out of an upstairs window; during another I jumped into open water (my mum and her friend jumped in and saved me). I am not being naughty during a meltdown. It is a very frightening experience for me and it takes a long time for me to calm down.

All in all, I am happy living with my family in Wales. I like the peace and quiet of the countryside. I enjoy living near the sea, and on a quiet day there is nothing I like more than to chase seagulls on the beach or draw pictures in the sand. Perhaps one of the most hurtful myths about autism is that we are incapable of love… Well nothing could be further from the truth. I love and am loved deeply in return, and all who get to know me are captivated by my bouncy, cheeky personality.

Written by Dawn Cavanagh (Jack’s mum – on behalf of Jack Cavanagh).

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. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk

New students join our LEaP Project

Group photo copyOur Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds is committed to providing practical solutions to the legal problems families face. Our lead researchers at the School of Law, Professor Luke Clements and Sorcha McCormack, have been busy recruiting students at the University to work on two new projects:

The Cerebra School Transport Research Project

Disabled children who can’t reasonably be expected to walk to school because of their special educational needs, disability or mobility problems have a statutory right to transport. Although councils are under a legal duty to provide this assistance, LEaP is often contacted by families who have been improperly refused this support. The main aim of the School Transport Project is to assess whether the school transport information on English local authority websites is fit for purpose.

The Cerebra Disabled Facilities Grants Research Project (DFG Project)

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of the DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The LEaP project is all about making research relevant to families in their everyday lives and the students will be publishing reports on their research in the new year.

Full details of all the legal help available from Cerebra as well as details of the research programme at the School of Law can be found here.

Clueless Clarence Book Review

Our librarian Jan reviews a new book available to borrow for free from our postal lending library.

clueless-clarenceClueless Clarence: 5th April 2007
by Zoe Hunter and Leslie Roberts
ISBN 9781785076091
£14.99

Meet Clarence and his family. Clueless Clarence is a book of the innermost thoughts of a 15 going on 16 year old boy with mild Autism. From a day by day diary written over the course of 2008 to a selection of his poems. This is a quirky fun and imaginative book that joins fact and fiction. Any parent with an autistic child will recognise the anxieties and the preoccupations and any teenager with a diagnosis will recognise that they are not the only one.