Author Archives: Elaine Collins

Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.

Workshops

We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on davidw@cerebra.org.uk. All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.

Freecycle

Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.

Signposting

We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

References:

(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)

Cerebra’s Christmas Dash!

We recently celebrated our 15th birthday with a festive fancy dress dash in Carmarthen! We had lots of fun meeting local families and supporters who loved joining in with the Christmas fun.

There were three fancy dress races on the day starting with a Toddler Run for the little ones, a 100m Sprint for the more athletic and a Family Fun Run for everyone to get involved in. The costumes were great with some runners bedecked in tinsel, some festive superheroes and even a family of reindeer! The cast from the local panto also joined in the fun – with great rivalry between the Dame and King Rat!

The town’s Mayor, Cllr Wyn Thomas, presented prize hampers for 1st, 2nd and 3rd place in each race along with one for the best fancy dress.  The hampers were made up of goodies donated by local shops and businesses.

Families could also visit Father Christmas and his elf in his grotto and enjoy mulled wine, hot chocolate and mince pies, kindly donated by the local Co-Op store.

Our Event’s Co-ordinator, Cecilia Bufton, said: “we wanted to make this a lovely festive fun event that the whole community could get involved in, while raising awareness and funds for the great work that we do and celebrating our 15th birthday”.

We’d like to thank all the local businesses for their sponsorship and support, the Town and County Councils for their assistance, the Town Mayor for giving his time and students from the University of Wales Trinity St David for their photography skills.

Thanks to everyone who joined in the fun and made this event such a great success – we’ll see you all again next year!

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!

We 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

“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.

Cerebra at the House of Lords

12189901_loresOn 26th October we held a Charity Reception at the House of Lords in London. This prestigious event was a great opportunity for us to raise awareness of the work that we do to help families with children with brain conditions discover a better life together.

The two hour programme was packed full of speakers to showcase the work that we do and to highlight why that support is needed.

The event began with a celebration of Rob and Poppy’s triathlon success earlier this year. Cerebra’s Innovation Centre take pride in designing cool products for cool kids, helping children with brain conditions to take part in activities that others take for granted. This year the team designed all of the equipment needed to take 11 year old Poppy Jones, and her dad Rob, to the finish line of the Cardiff Triathlon.

We also heard passionate and inspirational speeches from two young people. Mair Elliott was diagnosed with autism aged 15 after experiencing severe mental health problems. She is passionate about promoting a better understanding of the condition and spoke powerfully about her experiences. Sixteen year old Eve Hamilton helps care for her brother Cole who has a rare genetic condition. She spoke movingly about what it’s like to have a family member with a disability and about being a young carer.

Dr Nigel Simpson is Cerebra’s Academic Chair at the University of Leeds. Nigel explained to guests about the pioneering work of his research team who are aiming to reduce the number of premature births by improving the prediction of mums at risk of early delivery, so that fewer babies suffer the complications of being born too soon. He was followed by Tor Goodman, who is a Cerebra Ambassador and mum to two daughters, Alice and Hannah. Both girls were born prematurely and Tor spoke about her family’s experiences of premature birth and the impact it has had.

Lynn and BettyA special award was made to Lynn Palfreyman and Betty Blyth who run a small shop on a campsite in Burton Constable in Yorkshire. They have had a Cerebra collection box since 2000 and to date have collected an incredible £27,469 in spare change. Brothers Dylan and Ryan Hooper presented them with an award to recognise this incredible achievement and thank them for their support.

Isaac with the 50 Schools Challenge trophy

The event was also an opportunity to thank the Cathedral School in Cardiff who were the winners of our recent 50 Schools Challenge, raising £1421.43 for Cerebra. Isaac Taylor, who had suggested his school took part in the challenge, attended the event to received the winners trophy.

We would like to thank our event host Lord Kamlesh Patel and also Matthew Price who was our MC for the day. Thanks also to the Angelicus Chorale from the Hywel Girls’ Choir & Hywel Boy Singers, who provided the musical entertainment for the event – the group are proud to be Ambassadors for Cerebra.

We are also grateful to the Lottery Fund for sponsoring the event and to our corporate partners: Hyphen Law, Deloitte, Leigh Day and Claims.co.uk.

hyphen law

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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.