Author Archives: Sarah Jones

SEND funding in England: the Government needs your views!

Last week the Department for Education (DfE) in England made a call for evidence about SEND funding. As many of you will know and have experienced, the SEN system in England was significantly reformed in 2014 with the introduction of the Children and Families Act but that wasn’t the only change to have a big impact on children and young people with SEND.

Eighteen months or so prior to that the government made significant changes to the way SEND was to be funded at the local level. The combination of the these two major reforms has had led to numerous accounts of serious issues for children with SEND with almost daily news stories of exclusions, head teachers saying they have no money for SEND and parents taking local authorities, and even the government, to court for matters relating to funding.

The consultation is open until 31 July and the online response form can be found here.

The DfE have also asked the Council for Disabled Children to organise a small number of workshops across the country, so that they can discuss the themes in the call for evidence in greater detail. If you would like to attend one of these events, you can register your interest at [email protected], giving your name, role, organisation and email address. They will send you information about the events as soon as it is available.

Bizarrely, the call for evidence doesn’t include special school funding or school/college transport. Families are telling us that problems with the latter continue to be a serious issue for some parents meaning that sometimes they have to reduce the hours that they work or even consider giving up work all together. In many cases, getting a child/young person with SEND to school or college and providing a meaningful educational and social experience needs all the pieces of the SEND funding jigsaw to work together: it would be great if the DfE could focus on all of the pieces and not just some of them.

New Switch toys in our Library

We have some exciting new switch toys in the library.  Switches are accessible for all abilities, making them perfect for your child to explore cause and effect.  Whether your child responds to lights, music or movement they are going to love the new switch toys.

We have been able to introduce these additions to our switch toy collection thanks to the kind generosity of donations from trusts such as The Rothley Trust and the Green Hall Foundation.

We have also been able to replace some of the older toys and the all new Picture Wheel Projectors can also be operated with a switch.

Switch Adapted Spinning Gem Sphere

Gen sphere

A switch operated toy with coloured lights that rotates.  Press the switch to spin the sphere and watch the lights.  Also great in the dark.
Mains electric
Quantity: 2

Switch Adapted Dancing BeatBo

Beat bo

Dance and Move BeatBo is a great playtime pal for singing, dancing, moving and grooving!  Use up to 3 switches to activate his three modes ‘Dance and Move’ ‘Learning and Games’ and ‘SingAlong’.  BeatBo features a ‘light up’ tummy panel of changing colours.  Three detachable switches included.
Battery operated
Quantity: 2

Picture Wheel Projector

Picture Projector

This LED projector is energy efficient and cool running.  It comes with 3 picture wheels.  The rotator can be stopped and reversed for different effects.  Can also be used with the picture wheel for shadow work. It can also be operated with a switch.  A switch is included.
Mains electric
Quantity: 2

You can find more information about our library including how you can join and start borrowing books and sensory toys here.

CIC develop new sensory fish tank

CIC have developed a great new sensory fish tank. Fish are  great addition to a sensory experience, but are susceptible to the glass being banged and objects (mum’s car keys, TV remotes etc) being submerged!

This new tank from CIC comprises a stunning and tough external case which separates the fish from mischievous fingers. Additionally this tank can be secured to the table or side unit so that it can’t be tipped over. The tough lid is lockable to prevent experimental over feeding.

If you are interested in finding out how you can give a home to one of our fish tanks, please give the team a call to discuss your requirements! You can call them on 01792 483688 or email [email protected]. We look forward to hearing from you.

The long-term effects of unreliable, inconsistent support in CAMHS

Mair Elliott writes about how unreliable and inconsistent support from CAMHS has had an impact on her. You can read more of Mair’s posts in her blog. We’d like to hear about your experiences of delays or inconsistent support from CAMHS.

“When we discuss the high staff turnover, lack of reliable support, and other issues within CAMHS services we often think about the immediate distress that is caused to the young person in need of care and treatment. However, the ongoing effects can be just as distressing.

My experience of CAMHS, as with many other’s experiences, was of unreliability, numerous staff changes, lack of communication, and stop-start therapy. I’d invest my trust in a therapist only to have it broken when they departed at short notice. This happened over and over again. It was this continual loop of breaking my trust which has left me with some pretty serious insecurities.

Over the past couple of months, my therapist, whom I have been seeing for over a year, has had to take significant leave for various reasons outside both our control. Unexpectedly, it has triggered some deep insecurities within me. Yesterday she informed me that she’d have to take time off and I wouldn’t be able to see her for another 3 weeks. I am feeling incredibly vulnerable and upset over this. I don’t trust that she will come back, I don’t trust that I won’t be left stranded without support, I don’t trust that my trust will not be broken. Part of me feels that I can’t continue seeing her, that I should disengage because it hurts too much to have my trust broken over and over again. I know that this decision would leave me without any support, but right now that seems less painful. Another part of me is compelled to do something drastically self-destructive in order to prove to the CMHT that I really need support, that I’m not safe and can’t deal with this on my own. Unfortunately, my experiences have also taught me that the only way to get help is to do something drastically self-destructive.

I have very little point of reference for a stable, consistent therapeutic relationship, where I don’t need to continually prove I’m sick enough to be worthy of support. Therefore, it makes sense that I struggle to engage and trust in mental health professionals. My experience is that they cause me more pain, build my expectations and then let me down, and wait until the last minute to provide patchy support. Its almost as if I’m in an emotionally abusive relationship. Why should I invest my trust in professionals, when this is my previous experience?

The most shocking thing to me is that had I not had these experiences of CAMHS I wouldn’t have these trust issues and insecurities. I grew up in a loving, stable, nurturing environment, this fear of trust, abandonment and neglect didn’t exist before CAMHS – it was CAMHS that caused them. How can it be that a health service can cause this long-term damage? I put my trust in a service to support me and help me get better, but instead I was left with the acute distress at the time and long-lasting issues which are having a great impact on my ability to engage in therapy now as an adult. I have always veered away from blaming anyone, but actually right now I’m pretty f*cked off. It is completely unacceptable for a service’s failings to have left me with such a deep-rooted fear of trust, abandonment and neglect. I had, and still have, enough difficulties to deal with without this on top.

For now, I’m going to have to get myself through the next 3 weeks somehow. I logically know that the reasons for my therapist’s absences are out of her control, so I will do what I can to negotiate with the urges to disengage or self-destruct. If there’s one thing I’ve learnt about myself over the years, it’s that I have an ability to ‘get through’ things even if I’m metaphorically on my hands and knees and dragging myself along.

I’d be interested in knowing if this is a common experience of those who have accessed CAMHS? Is my experience unique? Have you experienced long term effects of poor care and treatment? “

We would love to hear about your experiences of delays or inconsistent support from CAMHS. Please get in touch with [email protected].

Specsavers donates almost £20,000 to Cerebra

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit
Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Staff at Specsavers opticians have helped donate nearly £20,000 to us, following a year of fundraising.

39 Specsavers stores across south and mid Wales joined forces to raise as much as possible in one year for children with brain conditions, and their families.

By organising an array of activities, including bake sales, fancy dress days, cycle-thons and a climb to the top of South Wales’ highest peak, Pen y Fan, Specsavers has donated an impressive £19,121.54 to us.

Neil Robinson, West Wales regional chair for Specsavers said: ‘The support provided by Cerebra is, sadly, much-needed by many families across Wales. During our time working with Cerebra, we’ve learnt the advice and information it provides to families goes far beyond leaflet sharing. It offers practical help and guidance to families to get the financial and social support they so desperately need when raising a child with a brain condition.’

Since its creation in 2001, Cerebra has provided support for families, including Imogen Ashwell-Lewis, a six-year-old with cerebral palsy, who Specsavers helped reach the top of Pen y Fan for the first time during the charity partnership. 

In addition to its support services and research work, Cerebra also has an Innovation Centre based within the University of Wales Trinity St David, where bespoke equipment is designed and created, free of charge, to make children’s lives easier.

During the partnership, Specsavers worked with the team at the Innovation Centre to help six-year-old Imogen Ashwell-Lewis, who has cerebral palsy, to climb Pen y Fan for the first time. A group of more than 40 people, including Specsavers staff, army staff and charity workers, helped Imogen summit south Wales’ highest peak.

Neil adds: ‘We’re proud to not only have donated money to Cerebra but create a lasting memory for Imogen and her family. It goes without saying that none of this would have been possible without the commitment of our staff, who have continued to fundraise for Cerebra, and the generosity of our local community for supporting our efforts.’

Terry Osborn, Income Generation at Cerebra, says: ‘It’s been brilliant to have the support of a national brand like Specsavers, and we are very grateful for the help stores across Wales have given to Cerebra over the past 12 months. Caring for children with brain injuries can put an immense amount of pressure on families, but the £20,000 raised will ensure life can be made just that bit easier for those we support.’

We won! Innovation Centre success

Dan, Ross and Gerallt at the St David Awards
Dan, Ross and Gerallt at the St David Awards

The Cerebra Innovation Centre (CIC), a partnership between Cerebra and the University of Wales Trinity Saint David (UWTSD), has won a prestigious award for Innovation, Science and Technology Award at the annual St David Awards ceremony organised by Welsh Government.

CIC is a team of engineers based within UWTSD’s Swansea College of Art. They design and build innovative, bespoke products to help disabled children to discover the world around them. Their designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help. Products and advice are provided to families free of charge.

The St David Awards are the national awards of Wales and are nominated for by the public.  Now in their sixth year, the Awards offer the opportunity to celebrate the nation’s most inspiring and talented people, and to give them the national recognition they deserve.  The finalists and winners are decided upon by the First Minister of the Welsh Government and his advisers.  The winners of the nine St David Awards categories were announced at a special ceremony that took place in the Senedd in Cardiff on March 21st.

“The CIC team are so proud to have won the St David Award!” said Dr Ross Head, Product Design Manager, CIC.  “Our jobs give us so much satisfaction; to be able to help children access activities that most people take for granted is a great privilege but to be recognised nationally for our work is simply amazing. A huge thank you to all of the Cerebra staff and our supporters, without whom we would not be able to fund this work. We believe that, with a little bit of help, anything is possible – I hope that winning this award will pave the way to helping many more children across the UK.”

Tracy Elliot, Head of Research and Information at Cerebra added:  “We are delighted to have won the St David Award 2019 for Innovation, Science and Technology.  We believe passionately that the young people we support should be able to take part and participate fully in society.  We develop innovative and, above all, fun solutions to the problems and barriers parents raise with us.  Our designs aim to reduce some of the social stigma attached to disabilities by making not only functional but beautiful products that enable our young people to participate in activities that are too often closed to them.  We aim to demonstrate what can be achieved with the right attitude and support and hope that by winning this award some of our passion and belief will influence others.”

Ross and the team develop logical, innovative and fun solutions for children with brain conditions.  Their designs aim to reduce some of the social stigma attached to disabilities by making not only functional but also beautiful products for amazing young people. Some of their products are ‘one-off’ bespoke designs, others are made in small batches and some are designed with the commercial market in mind.

The ethos of CIC is simple – if they can dream big, they can do big. Never accept it’s not possible. The Team have designed lots of equipment to help children in disabilities participate in activities such as surfing, horse riding and even triathlons. Last Autumn CIC helped six-year-old Imogen, who has cerebral palsy, reach the top of south Wales’ highest mountain in a specially modified four wheeled mountain bike.

Imogen’s mum, Catherine, explained the difference the team have made to her family: “Imogen was so thrilled and excited to have completed the climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure. She’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. We really are over the moon that CIC have won this Award.”

Professor Ian Walsh, Dean of UWTSD’s Swansea College of Art is extremely proud of the team, adding: “The University is delighted that the Cerebra Innovation Centre has won such a prestigious award. The innovative and inspirational work of the Centre has transformed countless lives over the past 15-years”.

If you have an idea for something that you think the team could help with, please get in touch at [email protected].

Christine Bunting takes on her biggest challenge yet as she prepares to trek to Mount Everest Base Camp

Christine with her equipment to get her to base camp
Christine with her equipment to get her to base camp

Christine Bunting, a lawyer from specialist Court of Protection law firm Hyphen Law, is about to take on the biggest challenge of her life as she prepares to trek to the world-famous Mount Everest Base Camp to fundraise for Cerebra.

The tough trek will involve climbing the legendary Everest Trail to Base Camp a (literally) breath-taking 5,360 metres above sea level. To put this into perspective, the highest mountain in the British Isles is Ben Nevis in Scotland stands at just 1,345 metres!

As a lawyer who has worked with many families of children with acquired brain injuries and other brain conditions over the years, Christine is passionate about raising awareness and much-needed funds for us.

Christine is delighted and honoured to have received advice and support from renowned adventurer Sir David Hempleman-Adams, the first person in history to reach the Geographic and Magnetic North and South Poles as well as climb the highest peaks in all seven continents, the ‘Adventurers’ Grand Slam’.

Christine will start her trek from the southern side of Everest, putting more than 12 months of training into practice to take on the epic hike. Her training regime has included borrowing a Hypoxic Training Machine from the Altitude Centre to improve her fitness and to help her adjust to the altitude she will be facing.

Christine is flying to Kathmandu, Nepal to prepare for the adventure on 4 April and after a short flight to Lukla Airport, rated the most dangerous airport in the world due to its high terrain and steep drops, she will start her 13-day trek with fellow climbers in the heart of the Himalayas.

She will begin a two-day walk to the village of Namche Bazaar to begin acclimatising to the high altitude and then trek for another two days to Dingboche to acclimatise further before starting her four-day ascent to Everest Base Camp. 

Christine in training for the high altitude
Christine in training for the high altitude

Christine said: “I love to get out of my comfort zone for charity and in recent years I’ve skydived over Salisbury Plain and wing walked on a 1940s Boeing Stearman biplane doing  heart-stopping aerobatics to raise money for Cerebra; but this is my biggest challenge to date!

“I can’t say I am looking forward to the possibility of getting altitude sickness or the extreme cold – rumour has it that it can reach minus 15 degrees at night – but while the trek will be a significant physical and mental test for me, it’s nothing compared to the challenges that families with children living with brain conditions deal with every day of their lives.

“The climb to Everest Base Camp will be an experience of a lifetime and to be able to do it while raising funds for Cerebra’s tremendous work supporting children with brain conditions and their families is a fantastic opportunity.”

Chris Jones, Chief Executive at Cerebra said: “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. We rely on the generosity of our supporters to fund our work and so we are so very grateful to Christine for taking on yet another challenge of her own and wish her a safe and successful trip”.

If you’d like to make a donation to Cerebra, Christine has set up a Just Giving page. She is funding the trek herself, so any money raised will go directly to the charity. To donate please go to: https://www.justgiving.com/fundraising/chrisbunting1.

Christine is director of Hyphen Law, a team of highly experienced specialist lawyers and support staff working solely on Court of Protection cases relating to property and affairs and the creation and management of personal injury trusts. The team works with clients, case managers, solicitors, families and support teams to deliver services tailored to their clients’ needs.

Cerebra Innovation Centre shortlisted for a St David Award

L - R: Gerallt, Tracy and Ross accept the St David Award nomination
L – R: Gerallt, Tracy and Ross

The Cerebra Innovation Centre (CIC), a partnership between Cerebra and the University of Wales Trinity Saint David (UWTSD), has been shortlisted for a prestigious St David Award.

CIC is a team of engineers based within UWTSD’s Swansea College of Art. They design and build innovative, bespoke products to help disabled children to discover the world around them. Their designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help. Products and advice are provided to families free of charge.

The St David Awards are the national awards of Wales. The team have been nominated for the Innovation, Science and Technology category, which celebrates those who have developed techniques or solutions that meet new requirements.

The ethos of CIC is simple – if they can dream big, they can do big. Never accept it’s not possible. The Team have designed lots of equipment to help children in disabilities participate in activities such as surfing, horse riding and even triathlons. Last Autumn CIC helped six-year-old Imogen, who has cerebral palsy, reach the top of south Wales’ highest mountain in a specially modified four wheeled mountain bike.

Imogen’s mum, Catherine, explained the difference the team have made to her family: “Imogen was so thrilled and excited to have completed the climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure – she’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. We really are over the moon that CIC have been shortlisted for this Award.”

Prof Ian Walsh, Dean of UWTSD Swansea College of Art said: “The University is delighted to hear that the Cerebra Innovation Centre has been shortlisted for such a prestigious award. The innovative and inspirational work of the Centre has transformed countless lives over the past 15-years”.

Dr Ross Head, Product Design Manager at the Cerebra Innovation Centre added: “It is such a privilege to be nominated for an award for doing a job that is so fun and rewarding to do anyway. I hope this will draw attention to our work so that we can continue to grow and help more children achieve more amazing dreams!”

The winners will be announced at the St David Award ceremony which takes place on 21st March.

World book day in our library

Thursday 7th March is World Book Day and we have lots of story books that are suitable for children of all ages available to borrow from our Library.

Young children

Sometimes by Rebecca Elliott

A colourful picture book for young children.

“Toby knows his sister Clemmie is very brave.  When she has to go to hospital, they both have to help each other face their fears.  Together they make hospital a much better place “.

Avery by Marta Altes

A lovely picture book for young children

“Avery is like other birds most of the time, but sometimes, feels a bit different.  But Avery is not alone”.

The Five of Us by Quentin Blake

An illustrated story for young children

“Angie, Ollie, Simona, Mario and Eric are five fantastic friends, each of whom has an unusual ability.  Disaster strikes on a day out to the countryside but, working together and combining their individual powers, the Fantastic Five save the day”.

5 to 8 year-olds

Ellie Bean the Drama Queen: how Ellie learned to keep calm and not overreact by Jennie Harding

A story explaining sensory processing disorder for 5 to 8 year olds.

“This cute children’s book offers insights into Ellie’s “dramatic” behaviours and provides easy sensory answers for parents and teachers alike.  Ellies’s story brings home what it’s like to grow up with sensory issues and helps a child to understand that he or she is not alone”.

Ian’s Walk A Story About Autism by Laurie Lears

A story explaining autism for children aged 5 to 8

“Julie can’t wait to go to the park.  But she’s not sure she wants to take her little brother, Ian, who has autism.  Ian does things differently.  At the park, he doesn’t like the tickle of a soft feather, but he loves to lie down and press his cheek against the hard sidewalk.  It’s hard for Julie to understand Ian.  But when he gets lost, Julie discovers that seeing the world differently, through Ian’s eyes, is the best way to find him”.

My Brother is Autistic by Jennifer Moore Mallinos

An illustrated story for siblings aged 5 to 8 who have a brother or sister with autism

“Having a brother with autism can sometimes be hard, especially when he freaks out in front of other kids at school.  It can be so embarrassing!  Maybe if the kids knew more about autism they’d stop teasing and making fun of Billy and just be nice”.

8 to 12 year-olds

Lulu and the Wishing Star by Pippa Fern

A heartwarming story about disability for children aged 8 to 12

“When Lulu and Sam make a wish to the Wishing Star, the young and trendy, guitar-playing fairy, Rock’n’roll-rockety-roo’ appears.  She grants their wish (well… sort of) but in her rush to catch a rock concert, forgets to leave instructions.  Can Lulu and Sam figure out their newfound powers in time to save their friend?”

Jumpin’ Johnny Get Back to Work! A Child’s Guide to ADHD/Hyperactivity by Michael Gordon

A fun story explaining ADHD for 8 to 12 year olds

“This story is told by a youngster who truly struggles to achieve, but doesn’t always meet with success and acceptance.  Although he moves through the day experiencing frustration and embarrassment, he still maintains his sense of humour and spirit of determination”.

The Panicosaurus by K I Al-Ghani

A story about managing anxiety for children with Asperger Syndrome aged 8 to 12

“Sometimes the Panicosaurus tricks Mabel’s brain into panicking about certain challenges, such as walking past a big dog on the street or when her favourite teacher is not at school.  With the help of Smartosaurus, who lets her know there is really nothing to be afraid of, Mabel discovers different ways to manage Panicosaurus, and defeat the challenges he creates for her”.

If you’d like to borrow any of these books, completely free of charge, contact our librarian on [email protected]. To find out more about the library check out our library page.

Designing a better future for children with brain conditions with help from South Wales Freemasons

L - R: Marc Lewis (Assistant Provincial Grand Master), Robert Payne (Charity Officer), Terry Osborn (Head of Income Generation at Cerebra) and Ross Head (Innovation Centre Designer and Developer)
L – R: Marc Lewis (Assistant Provincial Grand Master), Robert Payne (Charity Officer), Terry Osborn (Head of Income Generation at Cerebra) and Ross Head (Innovation Centre Designer and Developer)

Our Innovation Centre and the work they do to help children take part in and enjoy life alongside their friends has been given a boost, thanks to a generous donation of £38,749 by South Wales Freemasons.

One of the many ways we support children with brain conditions and their families is through our (CIC). At the CIC, a small team of innovators design and build bespoke products to help children overcome the challenges they inevitably face when taking part in activities that non-disabled children may take for granted.

The generous grant will contribute significantly to the salary costs for the Centre’s talented design team for one year, ensuring that the Centre can continue to make a difference to the lives of children across south Wales, and beyond.

Representatives from the South Wales Province visited the Cerebra Innovation Centre on Monday 28th January 2019 to learn more about the Centre’s innovative work and some of the children who will directly benefit from their support.

One of the children they met was two year old Amelie from Swansea who has quadriplegic cerebral palsy. Before Christmas the team made a Bouncer for Amelie which has made a huge difference to her daily life.  The Bouncer allows Amelie to move independently, something that she would otherwise be unable to do. She loves the swinging sensation and can enjoy this while the seating gives her all the postural support she needs. Mum Lucy explained that Amelie loves her Bouncer as it allows her to move on her own and have fun. The Bouncer also strengthens Amelie’s legs and core muscles so it’s great exercise for her too.

Amelie
Amelie

Ten year old Bailey is also from Swansea and has been enjoying the Spinning Pod that the Innovation Centre designed and made for him. Bailey has a life threatening brain condition, is blind and autistic. Bailey has a great love of music and really enjoys bouncing and spinning – so the new chair is perfect for him. In the chair Bailey feels safe and cocooned and can spin it himself which is great for his independence and also for him to self-soothe when he feels frustrated. His mum Charlie explained that that the chair is his new safe place and he spends a lot of time in it playing the piano and with his toys. She added that it’s ‘Bailey proof’ – very sturdy and unbreakable!

Staff and pupils from Ysgol Crug Las, a special needs school in Swansea taking pupils from ages 3 – 19, also attended the event.  Head teacher Clare Hobson explained that the school has a close and long standing relationship with the Innovation Centre.

Terry Osborn, Cerebra’s Head of Income Generation, said “We’re very grateful to South Wales Freemasons for their generous grant, which will allow us to help hundreds of young people with cerebral palsy, autism and similar conditions to enjoy everyday life in the same way as everyone else.”

Rob Payne from South Wales Freemasons, said:

“I’m delighted we’re able to support Cerebra, who do outstanding work helping some of the most vulnerable people in our community to have access to the same opportunities and lifestyle as the rest of us.”

You can find out more about the Cerebra Innovation Centre and view their whole product portfolio here.

CIC is a partnership project with the University of Wales Trinity Saint David and is based within its Swansea College of Art.