Category Archives: Information and Advice

Ollie’s Story

Ollie with his mum and brother

Ollie with his mum and brother

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

Ollie Taylor was born a fighter. Diagnosed with Wolf Hirschhorn Syndrome at birth, a rare neurological condition that affects just one in 80,000 people, doctors warned his parents he was unlikely see his third birthday. But, now nine, Ollie from Penylan in Cardiff continues to defy all odds.

Ollie’s condition means he was born with no muscle control and limited strength. He has experienced seizures, delayed growth and learning difficulties.

The first three years were particularly difficult for Ollie and his family. As he was unable to swallow or support the weight of his own arms and head, he required around-the-clock care from his mum, 49-year-old Cardiff Metropolitan University lecturer Sian Taylor, with the support of medical professionals.

‘As soon as Ollie was born it was a fight for his survival,’ Sian says. ‘At times our family feared the worst. It was devastating.’

But when Ollie was three, his condition became less life-threatening and Sian began searching for brain injury and neurological support groups. She was keen to focus on her son’s cognitive development. It was then she contacted Cerebra.

‘As an academic, I was really impressed with the evidence-based research at Cerebra and felt compelled to seek their help,’ she says. ‘I’m glad I did, as they offered me a grant to cover the cost of innovative physical therapy treatment that isn’t available on the NHS and that I would have not been able to afford myself. We take him for the sessions three times a year in Oxfordshire and the outcome has been better than we could ever imagine.’

Ollie is now able to sit upright and walk with an adapted frame. Sian hopes that, one day, Ollie will be able to walk unaided. She has been so impressed by the work of Cerebra that she has become an ambassador for the charity.

‘The work of the Innovation Centre is fantastic,’ Sian continues. ‘They designed a larger version of a toddler’s ‘jumparoo’ that he was able to test, and also provided a walking frame that allows him to get around the house.’

Cerebra has also introduced Ollie and his family to others going through similar experiences.

‘I think what makes Cerebra so unique is how it has created a community for parents and carers who, like me, felt isolated before. I feel inspired to do my own research and find myself often speaking with the charity’s team and signposting them to things I’ve found online. It’s a two-way process that I hope will help others who find themselves in our situation.

‘I was so pleased to hear that Specsavers has pledged its support to Cerebra. Not only will this help raise vital funds that are needed, but also awareness of the charity so it can help even more families in need of support, like ours has been.’

You can find out more about our Specsavers partnership here.

Imogen’s Story

Imogen with mum Catherine

Imogen with mum Catherine

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

Imogen Ashwell-Lewis, from Caldicot, was diagnosed with Cerebral Palsy at birth. The condition severely limits movement in the six-year-old’s lower body. As Imogen turned two, her mum, Catherine, sought additional support to ensure her daughter had the best opportunity to develop, both physically and socially.

She came across the Cerebra Innovation Centre in Swansea, which creates bespoke products for children with neurological conditions, and immediately got in touch.

‘The team at the Innovation Centre were great,’ she says. ‘We discussed Imogen’s condition and her need for something that could help her movement. They were very accommodating and immediately started working on an adapted wheelchair to help her get around our home and, as she grew up, out in the garden and further afield.’

As Imogen got older, she returned to the Innovation Centre to have a larger wheelchair created. The team at Cerebra have also designed a bespoke seat, which Catherine can now easily fit to trolleys when she is shopping or in her car, so Imogen remains comfortable while away from their home.

‘Imogen has a really close relationship with the design team, who often invite us along so she can test new products they are developing,’ Catherine says. ‘It’s great to see a group of people committed to improving the lives of children like Imogen.

‘The fact that a name as recognised as Specsavers has pledged its support not only means additional vital funds for the charity and the Innovation Centre, but also much needed awareness about what they can do.

‘Day-to-day life would have been so much more difficult without the adaptations Cerebra designed for us. Before she had the wheelchair her movement was extremely limited, which in turn affected her cognitive development and ability to speak and play with other children. This couldn’t be further from the truth now – she’s a smart and social six-year-old who has been given the opportunity to do everything a child her age should be able to do.

‘If it wasn’t for Cerebra this would have never happened.’

You can find out more about our Specsavers partnership here.

Ryan’s story

Ryan and Taran Hooper at our Specsavers partnership launch event

Ryan and Taran Hooper at our Specsavers partnership launch event

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

For six-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered UK charity Cerebra.

Ryan, from Kidwelly, 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.

‘Cerebra’s sleep service was invaluable to us,’ she says. ‘Whenever I would call 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.’

Vanessa is keen to promote awareness, and reduce the stigma, of Down’s syndrome and other brain conditions. As part of a larger group, Vanessa even climbed Pen y Fan at night to raise awareness and funds for the charity, and has since become an ambassador for Cerebra.

‘It’s thanks to businesses such as Specsavers, in addition to others that help raise funds and awareness, that Cerebra is able to help so many families like it has mine,’ she says. ‘It’s hard to think what life would be like had we not received the support from Cerebra, it would be a lot more hectic to say the least.

‘I’m proactive in raising awareness about Cerebra and its services, as well as awareness about brain conditions like Ryan’s. I want to remind the world that Ryan isn’t a lovely little boy with Down’s syndrome, he’s just a lovely little boy.’

You can find out more about our Specsavers partnership here.

New look library lists

Take a look at our great new Library Lists. We’ve made some changes to make them more user friendly. We hope these changes will help you find the things you are interested in. The Library Book List and the Children’s Book List are ready now on our library page.

We have added more subject areas so you don’t have to look through long lists of book titles. Popular topics like sensory processing disorder and growing up now have their own sections. The Children’s Books List now have the books listed by subject area instead of by age group. So you can now find all the books for children on ‘behaviour’ or ‘feelings’ or ‘for siblings’ together.

If you are already a library member, why not take a look and let us know what you think. If you haven’t joined the library yet, why not take a look to see what we’ve got.

We are in the process of updating our Sensory Toy List which will have new write ups and information about the toys with pictures taken of the sensory toys here at Cerebra HQ. It will be available soon but in the meantime we have a temporary Sensory Toy List which includes all the great new and replacement toys purchased with the money we received from Children in Need.

Sleep Cards

Our sleep cards give short tips on what you can do to tackle some of the most common sleep problems we help with.


 

Download the sleep cards

Download all (PDF)

Useful Links

There can be lots of reasons why your child isn’t sleeping well. Here are some organisations and resources that you might find useful.

Bedwetting

Sensory

Diet

Anxiety

Pain

Challenging Behaviour

Sleep Apnoea

Funding

Parent Support

Mindfulness

Other

New books in our library

We’ve got lots of great new books on a range of topics available to borrow now from our library.

Autism including Asperger Syndrome

AV6731 – Autism and Me (book & dvd)
Rory Hoy

L6732 – A Parents’ ABC of the Autism Spectrum
By Stephen Heydt
2017

L6728 – Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million
By Vikky Turner
2016

Communication

L6729 – Language for Thinking
By Stephen Parsons
2005

Education Teaching and Learning

L6733 – Provison Mapping and the SEND Code of Practice: making it work in primary secondary and special schools
By Anne Massey
2016

Growing Up

L6734 – When Young People With Intellectual Disabilities and Autism Hit Puberty: a parents’ Q&A guide to health sexuality and relationships
By Freddy Jackson
2016

Law and Rights

L6735 – Special Needs and Legal Entitlement: the essential guide to getting out of the maze
By Melinda Nettleton
2017

Personal Care including Feeding, Diet and Toilet Training

L6736 – What To Do About Smearing: a practical guide for parents and caregivers of people with autism developmental and intellectual disabilities
By Kate E Reynolds
2017

Sleep

L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children
By Gillian Cowdell
2007

Special Needs in General

L6737 – Achieving Successful Transitions for Young People with Disabilities: a practical guide
By Jill Hughes
2015

Therapies and Treatments including Medication

L6738 – Music Therapy for Multisensory and Body Awareness in Children and Adults with Severe to Profound Multiple Disabilities
By Roberta S Adler
2017

Children’s Books

Autism and Aspergers

C0273 – Through the Eyes of Me
Non-fiction
Age 5 and under

C0275 – Creating Autism Champions: autism awareness training for Key Stage 1 and 2
Non-fiction
Age 8 – 12

Feelings

C0276 – It’s Raining and I’m Okay: a calming story to help children relax when they go out and about
Fiction
Age 5 and under

If you’d like to borrow any of these books, completely free of charge, contact our librarian on janetp@cerebra.org.uk. To find out more about the library check out our library page.

Our LEaP project helps Rhiannon get the continence supplies she needs

Rhiannon

Rhiannon

Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.

Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.

The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.

During our research into Louise’s problem, we noticed that another part of the guidance said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to explain Louise’s situation and highlight the contradiction between the different parts of the guidance.

In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.

The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.

Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.

If you live in England and you’ve had similar problems to Louise, contact us at probono@cerebra.org.uk

 

Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):

Please change or delete the green text as appropriate.

Dear Sirs

Continence products for my [son/daughter][name]

My [son/daughter] [name] is [age] and s/he has [disability/condition].

I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].

I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:

“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”

This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.

As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.

Yours faithfully

Your name

School Transport in Wales: A guide for parents

This Guide explains the legal duties on local authorities to provide free school transport for disabled children in Wales. We aim to help parents and carers understand their legal rights, but you should not rely on this Guide as legal advice. The law relating to school transport can be complicated and you may need to take independent legal advice to find out how the law applies to your particular circumstances.
 
 
 
 
 
 

Download now

This Guide explains the law which applies in Wales. We have published a separate guide on the law in England, which is available here.

First published: 2017 This edition: 2017 Review date: 2020


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.