Category Archives: Practical Help

Ask for help from our Legal Entitlements and Problem-Solving (LEaP) Project

ask-for-help-from-lerpLEaP is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face.

We listen to families and help them get the knowledge they need to access health, social care and other support services. We identify the common legal problems that prevent families getting access to services and we develop innovative ways of solving those problems. We aim to reach as many families as we can by sharing our solutions as widely as possible.

Public bodies in the UK have certain duties to provide health, social care and other services for disabled children. Sometimes, however, families can experience difficulties in accessing these support services. Our LEaP Project has evolved from a number of initiatives set up by Cerebra to inform parents of their legal rights, including seminars, parent guides and template letters. Cerebra recognised that some parents might need additional support to approach the relevant authorities and decided to fund the LEaP Project, which is led by Luke Clements, Professor of Law and Social Justice at the School of Law, University of Leeds. The Project Team aims to provide free legal advice to families who need help getting the right support for their children.

The Project is open to parents and carers of children aged 16 or under who have a brain condition and who need help to resolve a legal problem regarding access to health, social care or other support services. Requests for help must satisfy our eligibility criteria – you can find out more in our Project Guidelines below.

If you would like to ask for help from the Project, please read our Project Guidelines and fill in the online request form:

Read the project guidelines
Fill in our online request form

Contact Us
If you would like further information, please contact us at probono@cerebra.org.uk or on 01267 242582.

Items in the lending library on Communication

Communication help from our library

Communication is a popular topic so we have lots of books on it as well as more practical help like PECS cards and Communication Aids.

Books

  • L1210 Trouble Talking: a guide for parents of children with speech and language difficulties by James Law
  • L6215 More Than Words: helping parents promote communication and social skills in children with autism by Fern Sussman
  • L6238 Communication Issues in Autism and Asperger Syndrome by Olga Bogdashina
  • L6242 The Classroom and Communication Skills Programme by Megan Ahlers
  • L6347 Developmental Speech Language Training Through Music for Children with Autism Spectrum Disorder by Hayoung Lim
  • L6381 Enabling Communication in Autism by Carol Potter
  • L6411 Helping Children to Improve Their Communication Skills: therapeutic activities for teachers by Deborah Plummer
  • L6460 Children with Social Emotional and Behaviour Difficulties and Communication Problems by Melanie Cross
  • L6461 A Pictures Worth: PECS and other visual communication strategies in autism by Andy Bondy
  • L6468 Early Communication Skills for Children with Down Syndrome by Libby Kumin
  • L6485 Small Talk: simple ways to boost your child’s speech and language from birth by Nicola Lathey
  • L6515 Teach Me With Pictures: 40 picture scripts to develop play and communication skills in children on the autism spectrum by Simone Griffin
  • L6532 Rising to New Heights of Communication and Learning for Children with Autism by Carol Spears
  • L6533 Augmentative and Alternative Communication: models and applications for… caregivers and users by Filip Loncke
  • L6540 Developing Communication for Autism Using Rapid Prompting Method by Soma Mukhopadhyay
  • L6546 Social and Communication Development in Autism Spectrum Disorder: early identification and intervention by Tony Charman
  • L6586 Talk to Me: conversation strategies for parents of children on the autism spectrum by Heather Jones
  • L6644 Other Ways of Speaking: supporting children and young people who have no speech or whose speech is difficult to understand by the Communication Trust
  • L6658 Giggletime: establishing the social connection a programme to develop the communication skills of children with autism by Susan Aud Sonders

Audio visual

  • AV6388 Talkabout: social communication skills (DVD)
  • AV6409 ISPEEK at Home: over 1300 visual communication images (CD-ROM)
  • AV6538 Discovery Pathways to Better Speech for Children with Down Syndrome (DVD)

PECS cards

  • C0208 PECS Cards Keyrings: ‘Instructions and Behaviour’ and ‘Feelings and Emotions’

Portable Communication Aids in the sensory library

  • SmartTalk – 8 picture communication aid, recordable
  • Partner 4 Plus – 4 picture communication aid, recordable
  • iTalk2 – 2 button communication aid, recordable

If you would like to borrow any of these or any other books from our library, it is free of charge. Please contact Jan the Librarian on 01267 244203 or janetp@cerebra.org.uk

Charlie Enjoys his new Trike

Charlie on his trike

Charlie on his trike

Cerebra’s grant scheme provides specialist equipment for children with brain related conditions so that they can enjoy life to the full – the same as any child.

Four year-old Charlie recently received a trike through a Cerebra grant and his mum Sarah told us how having the trike has transformed the family’s lives.

“Charlie was diagnosed with IP 36 deletion syndrome when he was two years old after a particularly astute paediatrician noticed some signs of the condition in Charlie.

His development was delayed and he missed many of his milestones so we knew that he needed to be checked.

Charlie is non-verbal and has severe developmental delay but he is still the happiest child. Even though he can’t communicate verbally, he still has great social skills and loves being out and about.

We are quite an active family and used to enjoy going out for bike rides and wanted Charlie to be able to enjoy the same freedom. Just because he has special needs – it doesn’t mean that he shouldn’t be able to enjoy the same activities as any other child!

We looked at getting Charlie a specialist trike from Quest 88 but the model that was suitable for Charlie’s needs was £2,300! That’s when we approached Cerebra for a grant to help towards the cost of the trike.

Since receiving the trike, Charlie has gone from strength to strength! It took him a little while to get used to the pedalling motion but now there’s no stopping him. He even giggles when we overtake people which is a joy to see!

Although he can’t communicate verbally, Charlie has learned a Makaton sign for bike and uses the Makaton sign for ‘more’ whenever we stop cycling to indicate we need to keep going! He will also pick the PECS symbol for bike when choosing which activity he would like to do. Then the normal sentence it a lot! It’s great to have something “normal” that we can all do together.

As well as the emotional benefits, Charlie’s Physiotherapist told us that the bike would develop his coordination and help to strengthen the muscles in his legs and core as he gets more independent with the pedalling motion. I can certainly see how the bike gives him lots of opportunities to develop physically.

Even though we steer Charlie when he is on the trike, the controls to do this are at the back so as far as Charlie knows, he is in control. This has greatly improved his confidence and has given him a little taste of independence – something that is invaluable.

We can’t thank Cerebra enough for the difference that having the trike has made for Charlie – and for the whole family.”

Emotional Support Website

Joanna Griffin is a Chartered Counselling Psychologist who also has her own child with a disability. She runs a website, Affinity Hub which aims to provide emotional support to parents and carers of children with special needs.

“Having a disabled child often means having to deal with additional associated challenges in practical, physical and emotional terms. My own journey into the world of special needs started when my eldest son was born.  Unfortunately due to mis-management, poor communication and a blocked theatre when he was delivered he was in a very poor condition and it took 23 minutes to resuscitate him. We were told that he may not smile, walk or talk.

Nine years on he does smile, walk and talk but has many difficulties and different diagnoses caused by the deprivation of oxygen at the time of birth.

Coming to terms with his diagnoses and difficulties has been a long, often painful, road.  New challenges have presented themselves along the way and I’ve been struck by what a difference it can make dealing with an understanding and empathic professional, or speaking to a parent who has experienced similar difficulties, particularly to my emotional wellbeing.

From my own personal experience I felt that parent-carers sometimes needed specific emotional support in order to help process their experiences and feelings. This was supported by my previous professional experience, as a Home and School Visitor at Hemihelp, as well as a pilot research study I undertook about other parents’ experiences and emotions.  The survey found that 100% of parents reported feeling stressed or anxious about their disabled child.  This correlates well with Cerebra’s study into stress in families which led to the excellent booklet ‘Managing Stress for Carers and Families’. In my study parents also reported feeling anger (66%) about their child’s disability and 60% felt depressed or down.  There were also feelings of helplessness (52%), guilt (50%) and denial (22%).

Exactly half of respondents reported a negative impact of having a disabled child on their own life, although many indicated that this could change depending on the time and day and they were only given the option to respond as either positive or negative.  Over 70% felt there had been a negative impact on siblings and nearly 80% on their relationship with their partner.

On a positive note, many parents reported feelings of pride (74%) and an inner strength or resilience (60%) that helped them get through their experiences.  Half of the respondents also reported having a ‘fighting spirit’ (52%) to advocate on behalf of their child.

Psychologists talk about post-traumatic growth and for 80% of respondents it had helped them put life into perspective, grow as a person (70%) and become more tolerant (65%). Many reported increased confidence in their ability to support their child, as they become the expert and, at times, counter the views of certain professionals.

I believe that if parents of a disabled child seek counselling they require someone with specific experience and knowledge to be aware of the many different factors that can have an affect on a parent-carer.  This may include: attending numerous appointments, fighting for services and limited resources, needing to ‘grieve’ for the healthy or idealised child one expected to have, lack of sleep, financial concerns, pressures on relationships, worries for the future, the trauma of seeing your child nearly die or undergo invasive procedures and concern for the impact on siblings. These are all difficult things to experience, process and accept alongside the day-to-day looking after a child and remembering that your disabled child is just a child who needs to play, be loved and hugged and learn about the world as any other child does.

Unfortunately trying to find organisations or professionals that can offer emotional support and understand the complex issues connected with having a disabled child, can sometimes be difficult.

In response I have developed a website of emotional support for parents of children with special needs.  The website, Affinity Hub, aims to provide a virtual home for parents to realise that they are not alone. There are many other families also going through similar experiences and feeling similar complex emotions. Hopefully by reading about this it can reduce isolation.

The Professional Support section lists organisations that provide emotional support as well as private counsellors, psychotherapists and psychologists that have experience of supporting this specific client group. I am in the process of identifying practitioners across the UK.

The website not only lists many common emotions parents might experience, it also includes quotes from other parents about their experiences and what advice they would give to other parents. There is also a growing list of books and reference material that parents have found helpful.

Although much of this information is available online if a parent were to search for it I hope that by bringing it all under one umbrella it will help parents and reduce the time (very precious to us parents) they have to spend looking.

Please share your views by completing the survey on your experiences as a parent of child with special needs on the home page at www.affinityhub.uk.”

University of Leeds Launches Disability law Hub

The University of Leeds is set to be a leader in the field of disability law with the launch of a Disability Law
Hub.

With more than one billion disabled people worldwide facing possible discrimination and exclusion, the
new hub will be dedicated to research on disability law, as well as offering a wide range of teaching
expertise at undergraduate, Masters and doctoral levels.

Specialist areas include mental health and capacity law, disability equality law, care law, international disability rights law, disabled victims of crime, and the relationship between disability and areas of law such as contracts, torts and intellectual property.

Forming one of the largest groups of disability law scholars in the world, the hub will be headed by
Professor Anna Lawson and will comprise nine legal academics and several PhD researchers.

At the launch event at the university on 15 April, Professor Anna Lawson, who is herself blind, said: “I
studied law at the University of Leeds in the 1980s because it was the only university that offered a
transcription service for blind students. Thirty years later, I am proud that my alma mater has taken a
leadership role in recognising disability law as an important area of legal research and scholarship and very
excited about working with my wonderful colleagues in this area.”

Professor Sir Alan Langlands, Vice-Chancellor of the University of Leeds, said the new hub builds on a
strong track record in disability studies at the university. He said: “For many decades the University’s
Centre for Disability Studies has challenged socially-created barriers that limit the life chances of disabled
people. The new Disability Law Hub houses the country’s leading group of legal experts in this cutting edge
field”

Two new Professors of Law and Social Justice have recently joined the School of Law and become members
of the hub. Luke Clements is an expert on social care law whose Chair is endowed by the charity Cerebra.
He is a practicing solicitor who has taken many of the landmark discrimination cases to the European Court
of Human Rights.

Oliver Lewis joins the School of Law while retaining his position as Executive Director of
an international human rights charity, the Mental Disability Advocacy Centre. He has worked in some 20
countries in Europe and Africa on strategic litigation and advocacy which advances equality, inclusion and
justice for people with mental health issues and learning disabilities.

Cord Cohn Low, Chair of the School of Law’s Advisory Board has said “When I taught law at the University
of Leeds in the 1970s and early 1980s I did not imagine that the School of Law would one day establish a
Disability Law Hub. I am delighted that its scholars have a range and depth of expertise that will be
invaluable in closing the gap between the rhetoric of human rights and the lived experiences of disabled
people around the world.”

Professor Alastair Mullis, Head of the School of Law, added: “I am immensely proud that the new
Disability Law Hub will offer undergraduate and postgraduate students an opportunity to engage with
legal theory and practice so as to improve access to justice for disabled people, who have languished on
the edges of the margins of law for tar too long.”

Cerebra is happy to share this press release which was issued by the University of Leeds.

You can find our more about the Law Hub here.

 

Borrow books on behaviour from our library

Books on behaviour from our postal lending library header

This month we have a list of the range of books on behaviour available to borrow free of charge from our Postal Lending Library.

Advice for parents:

  • L6627 Challenging Behaviour and People with Learning Disabilities: a handbook
  • L6593 Cognitive Behaviour Therapy to Help Young People with ASD
  • L6377 Power Parenting for Children with ADD/ADHD: a practical guide for managing difficult behaviours
  • L6350 and L6286 The Explosive Child: a new approach for understanding and parenting easily frustrated chronically inflexible children
  • L6450 and L6578 Calm Your Hyperactive Child: coping with ADHD and other behavioural problems
  • L6416 and L6530 Help Your Child or Teen Get Back on Track: what parents and professionals can do for childhood emotional and behaviour problems
  • L6364 and L6296 No Fighting No Biting No Screaming: how to make behaving positively possible for people with autism and other developmental disabilities
  • L6031 Achieving Best Behaviour for Children with Developmental Disabilities
  • L1611 Bringing Up a Challenging Child at Home
  • L6460 Children with Social Emotional and Behaviour Difficulties and Communication Problems: there is always a reason
  • L6180 Encouraging Appropriate Behaviour for Children on the Autism Spectrum
  • L1610 Communication-Based Intervention for Problem Behaviour
  • L1664 The Good The Bad and The Irritating: a practical approach for parents of children who are attention seeking

For kids:

  • C0151 Don’t Behave Like You Live in a Cave

Especially in class:

  • L6551 and L6597 Including Children With Attention and Behaviour Difficulties in the Foundation Stage
  • L1532 and L1608 A Practical Guide to Solving Pre-school Behaviour Problems
  • L6188 Getting the Buggars to Behave: advice on behaviour management in the classroom

Anger for children:

  • C0157 A Volcano in my Tummy: helping children to handle anger
  • C0131 Exploring Anger with Your Child
  • C0176 and C0245 The Red Beast: controlling anger in children with Aspergers Syndrome

Anger for parents:

  • L6421 Exploring Feelings: cognitive behaviour therapy to manage anger
  • L6526 The Anger Box: sensory turmoil and pain in autism
  • L6437 Anger Management: session plans using strength based solutions

Anxiety:

  • L6581 Gardening for Children with ASD: engaging with nature to combat anxiety
  • C0212 The Panicosaurus: managing anxiety in children including those with Asperger Syndrome
  • L6241 Helping Your Anxious Child
  • L6422 Exploring Feelings: cognitive behaviour to manage anxiety

You can also download our factsheet on Managing Challenging behaviour and Parent’s Guide to Anxiety, which gives guidance on helping your child reduce feelings of anxiety.

If you would like to borrow any of these or any other books from our library, it is free of charge. Please contact Jan the Librarian on 01267 244203 or janetp@cerebra.org.uk

 

What’s The Evidence? reports

The Peninsula Cerebra Research Unit (PenCRU), ‘What’s the Evidence?’ reports are an an ongoing series of short reports that seek to summarise what is known about the effectiveness of a particular treatment or therapy. These reports are a synthesis of existing research and are not new studies that have been carried out. They are written in responses to queries from families about specific therapies and treatments. These evidence summaries are intended to help families make informed decisions about treatments and therapies for their children’s health care. The team produce reports about both NHS and complementary or alternative therapies.

To find out more click here.

School Transport – Dylan’s Story

School transport help

Public bodies in the UK have certain duties to provide health, social care and education support for disabled children. The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of 11 year old Dylan.

Dylan has severe learning difficulties, attention deficit disorder and autistic behaviours. He has a Statement of Special Educational Needs which identifies his challenging behaviour and entitles him to school transport and an escort.

Dylan’s parents were concerned that his escort was unaware of his needs and didn’t have the necessary skills to manage his behaviour. Dylan had not been introduced to his escort before his first trip to school that term. He became stressed and anxious when travelling to and from school and, on occasion, behaved violently, harming himself, the transport vehicle and other children.

The legal opinion given by the LERP details the legal duties of the authority to make sure that children are transported safely and with the minimum of stress. Drivers and escorts should be properly trained to cope with a child’s specific disability related needs and behaviour.

The full case Report can be found on page 40 of the Digest of Opinions.  All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

Read the Project Guidelines to find out more about the type of legal problems we can help with.

Autobiographical Books in our Library

We have many books in the library written by the parents of children with neurological conditions and written by people themselves about their own experiences growing up.  If you would like to borrow any of them please email the Librarian on janetp@cerebra.org.uk or if you would like to join the library, there is a membership form on the library page of our website.

Books by parents who have children with:

Brain injury from birth

  • L6128 & L6211 Blue Sky July by Nia Wyn
  • L6663 The Skies I’m Under: the rain and shine of parenting a child with complex disabilities by Rachel Wright

Acquired Brain Injury

  • L6358 Unthinkable: a mother’s tragedy, terror and triumph through a child’s traumatic brain injury

Autism

  • L6037 Ollie: the true story of a courageous life by Stephen Venables
  • L6077 The Siege: a family’s journey into the world of an autistic child by Clara Claibourne
  • L6178 A Will of His Own: reflections on parenting a child with autism by Kelly Harland
  • L6256 Growing Up Severely Autistic: they call me Gabriel by Kate Rankin
  • L6307 Not Stupid: the inspiring true story of one mother’s fight to give her autistic children the quality of life they deserve by Anna Kennedy
  • L6496 Carly’s Voice: breaking through autism by Arthur Fleishmann
  • L6514 George and Sam: the story of two brothers with autism by Charlotte Moore
  • L6580 Coming Through the Fog: a mother shares her journey of her daughters recovery from autism and sensory processing disorder to functioning recovery and independent living while providing helpful tips for other parents by Tami Goldstein
  • L6624 A Real Boy: how autism shattered our lives and made a family from the pieces by Christopher and Nicola Stevens
  • L6651 Toast: autism in the early years by Alice Boardman
  • L6149 A Friend Like Henry: the remarkable true story of an autistic boy and the dog that unlocked his world by Nuala Gardner
  • L6545 The Horse Boy: the true story of a father’s miraculous journey to heal his son by Rupert Isaacson

Aspergers

  • L6309 Eating an Artichoke: a mother’s perspective on Aspergers Syndrome by Echo Fling
  • L6480 The Spark: a mother’s story of nurturing genius by Kristine Barnett
  • L6623 Natural Genius: the gifts of Asperger’s Syndrome by Susan Rubinya

ADHD

  • L6020 Marching to a Different Tune: diary about an ADHD boy by Jacky Fletcher
  • L6306 ADHD: a challenging journey by Anna Richards
  • L6507 The Boy From Hell: life with a child with ADHD by Alison Thompson
  • L6548 Multicoloured Mayhem: parenting the many shades of adolescents and children with autism, Asperger Syndrome and ADHD by Jacqui Jackson

Cerebral Palsy

  • L6280 My Perfect Son Has Cerebral Palsy by Marie Kennedy

Down Syndrome

  • L1299 & L6202 Expecting Adam: a true story of birth transformation and unconditional love by Martha Beck
  • L1307 Blessing by M Craig
  • L6129 Gifts: mothers reflect on how children with Down Syndrome enrich their lives by Kathryn Lynard Soper
  • L6201 Danny’s Challenge: the true story of a father learning to love his son by Danny Mardell

Learning Difficulties

  • L0767 Something’s Not Right: one family’s struggle with learning difficulties by N Lelewer
  • L6169 Miles From the Sideline: a mother’s journey with her special needs daughter by Maura Weis
  • L6198 When the Bough Breaks: a mother’s story by Julia Hollander
  • L6317 Laughing Allegra: the inspiring story of a mother’s struggle and triumph raising a daughter with learning disabilities
  • L6344 & L6555 Different Dads: father’s stories of parenting disabled children by Jill Harrison

Books by people who grew up with a condition

  • L6434 The Woman Who changed Her Brain: unlocking the extraordinary potential of the human mind by Barbara Arrowsmith-Young
  • L6214 Succeeding with Autism: hear my voice by Judith Cohen
  • L6419 & L6506 From Another Planet: autism from within by Dominique DuMortier
  • L6495 & L6620 The Reason I Jump: one boy’s voice from the silence of autism by Naoki Higashida
  • L6291 Freaks Geeks and Asperger Syndrome: a user guide to adolescence by Luke Jackson
  • L6135 ADHD: an autobiography of survival by Richard Kuendig
  • L6248 Only a Mother Could Love Him: how I lived and triumphed over ADHD
  • L1278 My Left Foot by Christie Brown (Cerebral Palsy)
  • L1346 Under the Eye of the Clock: the life story of Christopher by Christopher Nolan (Cerebral Palsy)
  • L6335 Where There’s a Will There’s a Way: Marilyn gives us a unique insight into what it is like living with Cerebral Palsy by Marilyn Earley
  • L6361 26 A Behind the Scenes Tour of Life with Cerebral Palsy by Stuart Maloney
  • L6643 If Only You Knew: a young girl growing up with Cerebral Palsy in the real world by Jacy Arthur
  • L1513 I Survived: how to get a life by P Churchill (Epilepsy)
  • AV6318 John’s Not Mad: the ground breaking QED documentary on the life of John Davidson and his struggle with Tourette’s Syndrome (dvd)
  • L6557 Passing for Normal: the memoir of a young girl’s struggle with Tourette’s Syndrome by Amy Wilensky

Books by people who have experienced a brain injury

  • L6466 The Day My Brain Exploded: a true story by Ashok Rajamani

Email janetp@cerebra.org.uk to borrow any of these books or go to our library page to view the rest of our books.