Amelie gets transport to school, with help from our LEaP Project

Karen, who lives in Surrey, contacted our LEaP Project in January for help with a school transport problem. Her daughter, Amelie, is 11 years old and has Phelan McDermid syndrome. The local council had been providing transport for Amelie to go to a special school for children with severe and profound learning difficulties. When Karen told the council that they were moving to a new address, within 3 miles of the school, the council said that she needed to re-apply for transport.

Karen explained in her application that Amelie wasn’t able to walk to school because of her complex needs. But the council decided not to provide transport, because Karen had help from carers and access to a car, so she was expected to drive Amelie to school or accompany her on public transport.

We wrote a letter to help Karen appeal the council’s decision. The letter explained that the council had a legal duty to make transport arrangements for Amelie, who couldn’t be expected to walk to school or travel by public transport, even if Karen accompanied her, because of her disability. The letter also pointed out that parents can only be expected to accompany their child along a walking route, not by car.

At first, the council refused Karen’s appeal and insisted that she had ‘means and resources available’ to get Amelie to school. With our support, Karen contacted a manager at the council to demand a fuller response, which specifically addressed all the health and safety issues she had raised. A few days later, the council phoned Karen and agreed that Amelie was entitled to transport because of her special educational needs and disability.

Karen was very pleased with the council’s decision: “It was extremely stressful having to deal with the loss of transport at the same time as moving and to receive the default responses from the council, which really felt like we hadn’t been listened to. I was very lucky to be supported by our school, social worker and GP and the LEaP Project and I think with the combined effort we got the right result. I am so happy that Amelie will be able to get to school in a way that is best for her.”

Karen had to challenge the council twice before getting transport for Amelie, because the council didn’t consider her appeal information properly. We know from our experience on the LEaP Project that some councils have refused transport twice or three times before putting things right.

If you’re in a similar situation, you can read our Parent Guide on School Transport in England and use our updated school transport template letter to challenge a decision. We also have a parent guide and template letter for parents in Wales.

If you’re still unhappy after using the council’s appeals process, you also have the right to complain to the Local Government & Social Care Ombudsman or the Public Services Ombudsman for Wales.

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.

Joshua’s Transition: Part 2

Emma tells us about the challenges of transitioning from child to adult services. You can read part one here.

It is now the month before Joshua’s 18th birthday, so we really are on the countdown to adulthood now. We have recently had a weekend with a hospital admission for seizures, which brought home some of the reality of what is to come.

In the ambulance on our way to hospital there was a debate between the paramedics over whether my 17 year old son would be treated by children’s A&E or Adults. The paramedic was under the impression that, as he was still in full time education, he would still be treated by paediatrics but there was some hesitation over whether or not they would accept him, once we arrived. Apparently for our local trust, adulthood begins at 16 and, after some debate, with Joshua on the trolley, they compromised and accepted him into Children’s A&E, but they warned me, if he was admitted onto a ward, that it would need to be an adult ward. I just wanted my son to receive urgent treatment and so I accepted their contradictory and confusing distinction.

In fact, when he was settled and we talked more, once they found out that he was still under a paediatric neurologist, as we had not yet been transferred to Adults, they relented and we were accepted by the Children’s ward. This confusion gave me an insight of what may lay ahead in our future, with just a month to go until this critical birthday. It seems that Joshua currently exists in an odd limbo-land.

I took the opportunity once on the ward, to ask the nurses something that had been bothering me for a long time. I had been told on one of our hospital stays, that there would be no facility for me to stay with Joshua once he was an adult, if he requires any overnight hospital stays. I was reassured to hear that this was scaremongering and that this was not the case. Nursing staff would need me there to reassure adult Joshua and to act as his interpreter too.

I did have a glimpse at the future though, that Children’s A&E would be preferable as, as the A&E consultant explained that there would be “fewer drunks and druggies in there!”, the prospect of which sent shivers down my spine. I was much more comfortable surrounded by murals of jungle animals and smiling children’s nurses, even though he was clearly too long for their trolleys then hospital beds on the ward.

After this hospital admission, I chased both his paediatric neurologist and his children’s epilepsy nurse, to remind them that Joshua’s birthday was fast approaching. Both have now come back to me with dates when we will be introduced to the new adult specialist in March. I have also had a telephone review with the Continence Service to discuss a handover to the adult service, when a home visit will be required and no doubt, they will try to talk us out of the current continence products that we are happy with and that we fought for, for a year.

We have recently had the review meeting for Joshua’s Education Health Care Plan, where both his current and adult social workers were present. There was a great deal of discussion about Joshua’s future respite and daycare, once he leaves education. At the end of the meeting, the Children’s social worker bid me goodbye and wished me luck, as she will never see me or Joshua again, which was a strange feeling. In the run up to adulthood, I keep getting these little nudges or reminders, so that I am forced not to ignore it.

Thankfully Joshua’s current respite provision has some flexibility to extend his stays, to assist with his transition to an adult respite provision. I think that I have finally found somewhere that I could picture Joshua enjoying, that is just 35 minutes from home and so we have time to plan his future there and to prepare him – and me – for the changeover. I will be emotional when he finally says goodbye to his current provider and even in the EHCP meeting, my only tears came  when I tried to express what their service and care has meant to us as a family.

But then once that is resolved, we will have to turn our attention to the even thornier issue of how he will be occupied during the day once he leaves school at 19! Joshua does not have the capacity to go on to further studies or some form of manual employment, so it will only be about keeping him occupied and happy for the rest of his life. We will be looking to replace the role that school plays in his life currently: some reason to get up and out in the morning and somewhere where he meets and enjoys the company of his peers and caring staff, while they do fun activities. I cannot address that yet, but I know that it is on the horizon and I must not leave it until the last minute but tackle it.

School will organise “taster sessions” of some alternative providers. These are big choices that we will be making together for his future and it feels a heavy responsibility to get it right for him. I am hoping that once again, I will recognise the right provision when I see it, that it will give me that sense of ‘home’ when we look around. For me, when Joshua has found the right school and respite setting, then they have both felt like home and so sadly, this birthday he will be evicted from his respite home and next year, he will be evicted from school too. Thank goodness that there is a year gap between them as to lose both on his 18th birthday, would be so unsettling and would leave us in inevitable crisis.

So that is a blessing, as is the fact that we will be supported throughout the change. I was recently asked by a parent if I would advise them to get a social worker in place, now that her son was 16, in readiness for transition. Of course it would depend on how good the social worker was, but I would not want to navigate this change without somebody who knows the system at our side, fighting our corner. Because it will be a battle, no doubt, and so we need a coach shouting out advice from the sidelines and picking us up when we fall down.

You can read Emma’s past posts here and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Meet our new Sleep Practitioners

We’re thrilled to introduce you to the two newest members of our sleep team, Carwyn Tywyn and Claire Cox.

Carwyn

Hi, my name is Carwyn and I was delighted to begin 2019 in my new role as Sleep Practitioner at Cerebra.

My early career background was in current affairs, both as an academic and a journalist. I was awarded a PhD in Welsh Politics at Cardiff University. After a brief period as a research assistant and academic tutor, I became Political Correspondent for GOLWG, the Welsh language weekly current affairs magazine. In this role, I was based full-time at the National Assembly for Wales during 2006-07.

It was while working at the National Assembly that I became more informed about and interested in the work of the voluntary sector in Wales. Since 2008 I have worked in research and senior development roles for a number of organisations, including the Disability Law Service, Home Start UK and Mencap Cymru.

My role prior to joining Cerebra was as a Regional Caseworker for the Mencap Cymru “WISE” project, which, in partnership with Cardiff Law School, provided advice and support in relation to learning disabilities. In 2018 the project was awarded the LawWorks award for “Most Effective Pro Bono Partnership”. Whilst at Mencap, I also received training in specialist approaches such as Mental Health First Aid, which has had a major influence on my outlook.

I have two children, Heledd (11) and Gwyn (6). I think it is the combination of being both a parent and frontline disability caseworker, which has attracted me to the role of Sleep Practitioner. I feel very lucky to have the chance to apply and give back some of my knowledge and experience to children and parents who may be struggling in all kinds of life circumstances.

In another life, I am a professional harpist, and was winner of the folk harp competition at the National Eisteddfod in 2013. Along with my daughter, I am a keen supporter of AFC Wimbledon. We saw them win at Wembley in 2016!

I look forward with anticipation to my new career at Cerebra. Diolch yn fawr.

Claire

Hello!

I’m Claire. I am super excited to be part of the sleep team. I can’t wait to start helping families with their children’s sleep issues and empowering them to make the changes they need.

After volunteering with many charities over the years I am so happy to be working for such a wonderful one!

I come to Cerebra from working privately in London as a Prenatal/postnatal/Newborn care specialist, trouble shooter, Nanny and sleep practitioner.

Prior to this I used to be a professional dancer which took me all over the place doing many different things!

I also had my own ballet school.

My partner and I have our own theatrical production company of which we are very proud of!

We are about to leave London to live our dream life in Clovelly, North Devon! 

It’s a big year of change for me and I couldn’t be happier to be working with all of you for such a worthwhile and needed charity!

Find out more about our Sleep Service.

Has your child been refused a continence assessment at home?

Has your local continence team told you that they can only assess your child at a school/hospital, rather than at home? Our new template letter could help you to make a complaint.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. A parent recently contacted the Project for advice about her son’s continence assessment. She had been told that the assessment had to take place at her son’s school and that home assessments weren’t possible. She was also told that the supply of nappies would stop if they weren’t able to attend the assessment at the school. The family wanted the continence team to be more flexible and consider giving them the option of an assessment at home, because of their son’s complex medical needs.

We wrote a template letter to help the family make a complaint to the local health authority. Our letter explains that public bodies must act reasonably and where they have the power to do something, they must be prepared to act flexibly, instead of adopting rigid policies.

We wanted to share this template letter with other families who might find themselves in a similar situation. We have separate versions for England and Wales.

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.

Samuel discovers freedom with his Oxy-gem

Samuel and his oxy-gem
Samuel and his oxy-gem

Samuel’s mum Joceline recently contacted our Innovation Centre. As a member of a parent group on Facebook, she had seen how another child had benefited from our Oxy-gem. She knew that it would be perfect to help Samuel.

Three year-old Samuel has Down’s Syndrome and small airways disease. This means that he is on oxygen 24/7 and whilst he can walk, he could not carry the weight of his oxygen cylinder so his mobility was extremely restricted.

Joceline knew that the Oxy-gem could greatly improve Samuel’s independence and the Innovation Centre team were happy to help!

We sent Samuel one of our Oxy-gems in time for him to take it for a test drive around Blenheim Palace!

Joceline told us: ‘It was the first time he’d been able to participate on foot, rather than in his buggy.  You can see the excitement on his face.  The trolley went for a good 20 mins, on the path, on the grass, through the leaves….it was a life liberating day for him. He also uses it at school twice a week and it’s brilliant.  

Thank you so much for your help with this. I cannot begin to tell you how valuable the Oxygem is to us.  It has freed our son from the shackles of a buggy and helped him develop his independence and core strength and physical stamina.’

If you would like to find out how the Cerebra Innovation can help you, whether that’s with the Oxy-gem or if you have another challenge for the team, please get in touch! Email [email protected].

Can you guess our most popular post from 2018?

We’ve crunched the numbers, we’ve checked them twice and now we can reveal our most popular posts from 2018.

5. Is your child getting unsuitable continence products?

If you’ve been told that your child can’t have the continence products they need, you can use our template letter to make a complaint.

4. What can I do if my child needs me to be there in order to sleep?

This snippet taken from our sleep guide can help you if your child can’t sleep alone.

3. Jonas enjoys sensory toys from our library

Jonas’ parents contacted our postal lending library to borrow some sensory lights. Mum Jolanta and dad Andrej told us their story.

2. Travel insurers covering children with disabilities

If you’ve had trouble getting travel insurance companies our list of companies who cover preexisting conditions can give you a place to start.

1. Sleep tips and techniques

Our sleep tips and techniques booklet took the top spot. It’s packed full of helpful advice to help your child get a good night’s sleep.

Cerebra to benefit from Co-op Community Fund

Vanessa with Dylan, Ryan and Taran
Vanessa with Dylan, Ryan and Taran

This year we have been chosen to benefit from the Co-op Local Community Fund.

At a time when funds for charitable organisations are becoming more difficult to access, we are incredibly grateful for this opportunity to make real difference.

We are raising funds so that we can continue our work to help families who have a child with a brain condition to discover a better life together. Families who have a child with a brain condition such as autism, cerebral palsy or Down’s Syndrome 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.

Support from the Co-op Community Fund will help us to carry on supporting families like the Hoopers from Kidwelly. For seven-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered Cerebra.

Ryan has Down’s syndrome and the condition often causes poor or disturbed sleep, something that affected him and had a knock-on effect on the whole family. When his mum, Vanessa, heard a representative from Cerebra speak four years ago at a local Down’s syndrome support group, she was keen to find out more about how the charity could help her son. Helping him to get a better night’s sleep was at the top of her wish-list.

Vanessa says “Cerebra’s sleep service was invaluable to us. Whenever I called they’d answer my questions and reassure me I could cope. The sleep practitioners helped us countless times and were able to get us into a routine, which gave some normality to our daily life”.

To help raise the vital funds, we’ll be relying on Co-op shoppers. Every time they buy Co-op own brand products they get a 5% reward for themselves, and a further 1% goes to local causes like ours. Co-op members can decide which local group they would like to back by going on-line at www.coop.co.uk/membership. We really hope that people will visit the website and choose to support us.

If you’re not a member and would like to support us, you can join at your local store or online at www.coop.co.uk.

When a community comes together we’re able to achieve great things, so we hope you can help promote our project.

Watch Vanessa explain what it’s like to have a child with a brain condition who doesn’t sleep well: