1000 Families Study – We Need You!

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Are you the parent or parental caregiver of a child aged 4-11 years that has a learning disability? If so, please take part in our new ‘Cerebra 1000 Families study.’ Your child might have other conditions – such as Autism, or any one of a number of genetic syndromes. As long as your child also has a learning disability, we would be very keen to hear from you.

The Cerebra Family Research Group at the University of Warwick, in collaboration with the research charity Cerebra, wishes to explore the experiences of families who live with a child with a learning disability in the UK. We want to make this the largest study ever of families of children with learning disability in the UK.

This research will further our understanding of what it is like to raise a child with a learning disability in the UK and will help shape future support for families and children.

You can find out more about and take part in the survey here.

You can view a video about the research project here.

University of Warwick logo

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

The Hospital Saturday Fund donates to Cerebra

Sarah Robey, Trust Fundraiser for Cerebra, receives a cheque from the Hospital Saturday Fund.

Sarah Robey, Trust Fundraiser for Cerebra, receives a cheque from the Hospital Saturday Fund.

Cerebra recently received a donation of £3000 from the Hospital Saturday Fund.

The cheque was presented at a special reception hosted at Cardiff University recently. In total, almost £80,000 was donated to twenty two charities at the event, which was the Fund’s first charity reception in Wales.

Cerebra received the donation to help towards the work of the Innovation Centre which provides research and design into bespoke equipment for children with brain related conditions.

Paul Jackson, Chief Executive of the Hospital Saturday Fund said: “We are delighted to hold our first charity reception in Wales and support many charities in the area, a number of which are less well-known. The Hospital Saturday Fund is honoured to support the efforts of such deserving charities and help in some way towards the exceptional, tireless work that they do.”

The Hospital Saturday Fund is a registered Charity whose aims are to provide assistance through its charitable funds for individuals with a medical condition or disability who would benefit from assistance with the purchase of specialised equipment or from practical forms of treatment; registered health charities such as hospitals, hospices, medical organisations who are in need of grants for medical projects, care, research or support of medical training.

In 2015 the Fund will give £850,000 in grants to medical charities for care and research, hospices and hospitals across the UK and Ireland. Assistance will also be given to individuals whose illness or disability has caused financial difficulties.

Cerebra is very grateful to the Hospital Saturday Fund for its support.

Tom’s Trike

Tom and his trike

Tom and his trike

Young Tom Hegenbarth from Bromsgrove in Worcestershire has just received his brand new Tomcat trike thanks to Stourport-on-Severn Inner Wheel and Cerebra.

Tom has Alfi’s syndrome, a rare condition causing poor balance and co-ordination, low muscle tone, epilepsy and learning difficulties. He also has scoliosis and has rods to support his spine. Cycling is one safe activity that Tom can do but he has never had his own bike until now.

The trike was funded by a generous donation by Stourport-on-Severn Inner Wheel and a grant from Cerebra.  The Inner Wheel have been fundraising for Cerebra over the past 12 months – they arranged a concert with local singer David Lawrence and young duo Lady and the Sax as well as an afternoon tea. Over the year they raised £1000 which they donated to Cerebra with the request that the money be used to help a family in the West Midlands area.

The family are very grateful for the donation and the grant which made Tom’s cycling dreams come true. Tom’s mum Judith said: “It is so wonderful to see him able to exercise more independently and to cycle alongside his brother – your gift is a gift for the whole family. Thanks again for your hard work and generosity”.

Tom added: “Thank you so much for helping me get my bike. It’s really cool and I like to go on it lots. It’s yellow which is my favourite colour”.

You can watch a short video clip of Tom enjoying his new trike here.

If you a part of a group that would like to fundraise for us please get in touch with us on 01267 244221 or give@cerebra.org.uk. Your support really does make a difference to families.

Events – November 2015

EventsEnglish Federation of Disability Sport, EFDS
Calendar of forthcoming national and local disability sports events. There is also a list from Scottish Disability Sport.

Resilience Forum
7 December 2015, 12noon – 2pm.
Room 304, Priory Square Building, Hastings Campus, University of Brighton, TN34 1EA.
Free but needs to be booked in advance. For anybody interested in the topic of “building resilience alongside vulnerable young people in a technological age”, with special reference to their use of social media.

It’s Behind You!
Directory of major pantomime productions, November 2015 to January 2016.

News – November 2015

A stack of newspapersOur monthly roundup of news and legislation relevant to families who have children with neurological conditions.

Ambitious Colleges
Ambitious About Autism plan to open two more college facilities for young people with autism, from Summer 2016 in Tottenham and from September 2017 in Isleworth, London. (Ambitious College).

Epilepsy Passport
A downloadable template Epilepsy Passport has been developed by the Royal College of Paediatrics and Child Health. This is a record that families can use for emergency healthcare visits and other situations.

Autism Diagnosis Crisis
The National Autistic Society invites people to join their campaign for earlier diagnosis of autism.

Victims of Crime
A new Code of Practice for Victims of Crime has been published.  It includes various provisions for victims with disabilities, (Ministry of Justice.  Applies to England and Wales).

New NICE guidance: 
Quality standards on Challenging behaviour in learning disabilities; and Bipolar disorder, psychosis and schizophrenia in children and young people, (National Institute of Health and Care Excellence).

Immunisations
A quick guide to immunisations for the parents of premature babies, (NHS). Updated to reflect this year’s changes to the schedule.

“Supporting the Attainment of Disadvantaged Pupils”
A new report by the Dept for Education describing what has worked in selected schools around the country.

Legislation

2015 asp 11, British Sign Language (Scotland) Act 2015
Prepares for the preparation and publication of plans in relation to British Sign Language by certain national organisations.

2015 No. 1754, The Universal Credit and Miscellaneous Amendments Regulations 2015
From dates between November 2015 and April 2016, a number of adjustments to the rules for receiving Universal Credit.

2015 No. 1778 (C. 108), The Criminal Justice and Courts Act 2015 (Commencement No. 3 and Transitional Provisions) Order 2015
From 26 October, means that 17-year-olds who are interviewed or detained by police must now be treated as under-17s in some ways (such as forms of assistance, and care from the local authority).

2015 No. 1776, The National Health Service (Exemptions from Charges, Payments and Remission of Charges) (Amendment and Transitional Provision) Regulations 2015
Changes the rules for entitlement to reimbursement of NHS-related costs (optical, travel etc.). Families can still claim under the old rules for charges incurred up to 31 October 2015.

Consultation

Local area SEND consultation
About inspections of local areas’ effectiveness in identifying and meeting the needs of children and young people who are disabled and have special educational needs. There are separate versions for adults and children to respond to.
Closing date: 4 January 2016 (applies to England. Ofsted, with the Care Quality Commission).

Resources – November 2015

ResourcesOur monthly round-up of useful resources for parents of children and young people with neurological conditions.

Plain Facts
A magazine and tape for people with learning difficulties, describing research topics of interest, (Norah Fry Research Centre, Bristol).

“What good looks like in psychological services for children, young people and their families”
A new handbook published by the British Psychological Society as psychological services are under review, (links to a free download).

Grow Wild UK
Grants of £1,000 to £4,000 for community wild flower projects.  Closing date for Spring 2016 projects, 1 December 2015, (Lemos & Crane with Royal Botanic Gardens, Kew).

Book on Autism
A parent has recommended to us a new book on autism, “Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently”, by Steve Silberman. It won the 2015 Samuel Johnson prize for non-fiction and has attracted some high-profile reviews, for example The Guardian at: http://www.theguardian.com/books/2015/aug/23/neurotribes-legacy-autism-steve-silberman-book-review-saskia-baron. The reference given by our parent member was: http://bookshop.blackwell.co.uk/jsp/id/Neurotribes/9781760113636.

Top tips for getting around on public transport
A short video for young people with autism, (Ambitious About Autism, myVoice project).

Five tips that helped improve my child’s behaviour
From a mother of two boys with autism, (Autism Speaks).

Seasonal resources

Cold Weather Plan for 2015-16
This year, pregnant mothers are classed as one of the vulnerable groups.  The Plan follows NICE (National Institute of Health and Clinical Excellence) guidance and the strategy “Cutting the cost of keeping warm” by the Dept for Energy and Climate Change.  It includes a system of cold weather alerts for England.

Epilepsy and Flashing Lights
Short article about minimising any risk of a seizure triggered by festive flashing lights, electronic screens or fast-changing light and dark patterns, (Dr Fergus Rugg-Gunn, Epilepsy Society).

DIY Sensory Play
Five recipes for play materials to make at home for children with sensory difficulties (playdough, finger paints etc.), (Multi-Sensory World).  There are some small sensory presents for sale on the same website, and a blog with tips on dealing with sensory issues).

Sensory Toy Warehouse
More small sensory items.

8 presents for young children with cerebral palsy
A parent’s article about toys that her son enjoys, followed by a comments section where other parents share their successful ideas, (“Mrboosmum”).

Sensory toys
Autism West Midlands are selling a Christmas Sensebox and Glowbox.

Special needs and special occasions
Ideas for where family gatherings, etc. might be awkward. Other potentially stress-busting articles are referenced at the bottom of the webpage (Terri Mauro, About.com).

Knowsley Family Forum – Rare Genetic Conditions

Little girl with Angelman's SyndromeWe recently held our first Cerebra Family Forum in Knowsley in the north west. We had three informative speakers for this event, providing information on rare genetic conditions and current research projects.

Unique is a charity that supports families of children with rare genetic conditions. Dr Beverly, Searle, their CEO explained how rare chromosome disorders occur and gave an insight and update on current research projects. Beverly also provided information on their and services and publications. Her presentation can be downloaded below.

Elizabeth Halstead, Lead Research Officer for Cerebra, provided an overview of Cerebra’s Research projects and the launch of a new 1,000 families study for parents and carers of children with learning disabilities. This new study aims to provide the largest UK database for information which is essential for future research in this area. Elizabeth’s presentation can be downloaded below.

Dr Caroline Richards, Research Fellow at Cerebra’s Centre for Neurodevelopmental Disorders at Birmingham University, provided an overview of their work, which includes research with families of children with rare genetic conditions. Caroline’s presentation focused on research on sleep and challenging behaviour often prevalent in children with rare genetic conditions.

Fifty two people attended the event and the feedback was fantastic with lots of positive comments about the quality of the presentations and information available. Lots of parents and carers commented they were unaware just how much research is ongoing and many felt it was great to have an event dedicated to rare genetic conditions.

Download Unique Presentation pdf

Download 1000 Families Study Presentation pdf

Visit our research pages to find out more about the exciting research funded by Cerebra at universities across the UK and in Barcelona.

Swimming with Sharks for Cerebra!

Leon in the shark pool

Swimming with sharks

13 year old Leon Crawley from Taunton in Somerset recently took a deep breath and plunged into a pool of sharks to raise money for Cerebra.

Leon, a pupil at Heathfield Community School in Taunton, said: “I wanted to do something to make a difference in someone’s life and I wanted to challenge myself.

I had to have some scuba training at the aquarium before I could get in the tank with the sharks. I really enjoyed it but was a bit nervous about what would come next. I was one of the first in the tank and as I got into the water I could see lots of different types of fish. It was a bit scary when a two meter long shark started swimming straight towards me!

Doing the dive was cool but raising money was the best bit. I kept checking my JustGiving page to see how much I had raised and read the messages I was left by donors. I’m really pleased and I’m looking forward to my next challenge”.

The swim took place at the Blue Planet Aquarium in Cheshire and so far Leon has raised almost £250 for the charity. If you’d like to donate please visit his JustGiving page.

If you’d like to challenge yourself to raise money for Cerebra then please get in touch with us on give@cerebra.org.uk

Innovation Centre receives royalties

IMG_6552 (002)

Pictured: left to right: Daniel Cuthbertson (CIC), James Leckey (CEO Leckey and Firefly), Cerebra Mascot Sir E Bear, Ross Head (CIC/UWTSD), Conor McKernan and the Firefly Team.

The team from the Cerebra Innovation Centre (CIC) recently visited Leckey and Firefly in Belfast to receive a royalty cheque for £23,199.

Some products originally designed by the CIC team are being manufactured and sold by Leckey, who specialise in a variety of positioning equipment for children with special needs.

Royalties are given to Cerebra every time they sell any of the products designed by CIC. These include GoTo seats, Scoot seats, and the supermarket “fixed” GoTo seat.

Ross Head from CIC said:  “We are so proud to be involved with these amazing products. We could never have hoped to have made something so successful when we designed the first prototypes all those years ago. Our collaboration with Leckey and Firefly has been amazing, the guys in Belfast are so kind and accommodating and share our passion to help. It is not about the money for any of us, we all just want to see kids being included into everyday life, but we cannot deny that the money Leckey give us allows us to continue the amazing work that we are blessed to be able to do. The money contributes directly to new and exciting product concepts to help children and also to high level research that will enable us to be more effective in finding solutions for more children. I love my job and am lucky to be surrounded by such a dedicated team.”

Take a look at our CIC pages to see if the team can help your family.

Borrow books on Special Educational Needs from our library

Borrow books on Special Educational Needs from our postal lending libraryWe have lots of books on Special Educational Needs available to borrow for free from our postal lending library.

The new EHC plans and SEND Code of Practice

  • L6652 The SENCO Handbook: leading and managing a whole school approach by Elizabeth Cowne
  • L6633 Special Needs and Legal Entitlement: the essential guide to getting out of the maze by Melinda Nettleton
  • L6656 The SEND Code of Practice 0 – 25 Years: policy provision and practice by Rona Tutt
  • L6655 Acheiving Successful Transitions for Young People with Disabilities: a practical guide by Jill Hughes

Special Educational Statementing (where it is still applicable)

  • L6341 and L6569 Surving the Special Educational Needs System: how to be a velvet bulldozer by Sandy Row
  • L6322 Guerilla Mum: surviving the special needs education jungle by Ellen Power

Inclusion

  • L6327 and L6383 Choosing a School for a Child with Special Needs by Ruth Birnbaum
  • L6167 and L6535 Special Educational Needs a Parents’ Guide by Antonia Chitty
  • L6585 Including Children with Cerebral Palsy in the Foundation Stage by Lindsay Barnes
  • L6592 Including Children with Autistic Spectrum Disorders in the Foundation Stage by Clare Beswick
  • L6551 and L6597 Including Children with Attention and Behaviour Difficulties in the Foundation Stage by Maureen Garner
  • L6370 Key Issues in Special Educational Needs and Inclusion by Alan Hodkinson
  • L6342 How To Reach and Teach All Students in the Inclusive Classroom by Sandra Rief
  • L6455 Including Me: managing complex health needs in schools and early years settings by Jeanne Carlin
  • L6513 How To Make School Make Sense: a parents’ guide to helping the child with Asperger Syndrome by Clare Lawrence

Reseach

  • L6213 Special Educational Needs Inclusion and Diversity by Norah Frederickson

Special provision

  • Schools for Special Needs Gabbitas Education 18th Edition 2013: the complete guide to special needs education in the United Kingdom
  • L6501 Personalised Learning for Young People with Profound and Multiple Learning Difficulties by Andrew Colley

Particularly for teachers / SENCOs

  • L6427 A Practical Guide for Teachers of Students with Autism Spectrum Disorders in Secondary School Education by Debra Costley
  • L6412 Transforming the Role of the SENCO: achieving the national award for sen co-ordination by Fiona Hallett

Home schooling

  • L6143 Teaching at Home: a new approach to tutoring children with autism and Asperger Syndrome by Olga Holland
  • L6430 Autism and Flexischooling: a shared classroom and home schooling approach by Clare Lawrence

If you would like to borrow any of these books please contact our librarian on janetp@cerebra.org.uk or 01267 244203. To download a full list of all of our books visit our library pages.