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BOOKS FOR CHILDREN:

Most of our favourite picture books for children can be found on the Little Parachutes website:https://www.littleparachutes.com/category/health/disabilities/

The charity Scope has created a number of stories about specific situations like peg feeding or having splints fitted. These can be found here: https://www.scope.org.uk/advice-and-support/storybooks-featuring-disabled-children/

Waterstones has a large selection of novels for older children featuring disability and difference here: https://www.waterstones.com/category/childrens-teenage/personal-and-social-issues/disability-and-special-needs/page/1#p_8033855

We would add these:

FOR CHILDREN

I’m The Big Sister Now by Michelle Emmert

Nine-year-old Michelle describes the joys, loving times, difficulties, and other special situations involved in living with her older sister Amy Emmert, who was born severely disabled with cerebral palsy.

Wonder by R.J. Palacio

The best-selling story that has been made into a best-selling movie of a teenage boy with a genetic disorder that causes facial disfigurement. The most moving, empowering tale.

Don’t Call Me Special: A First Look at Disability by Pat Thomas

This book looks at what it’s like to be a disabled child, while mostly positive it does include some of the frustrations of the child themselves and their family and friends.

Amazing by Steve Anthony

A little boy and his pet dragon are the very best of friends. They laugh, they sing, they dance, they snooze. They are both amazing – just like everyone else!

Sleepovers by Jacqueline Wilson

Daisy wants to invite her friends for a sleepover but is worried they will make fun of her sister Lily – because she is disabled. Good for siblings.

Treehouse At Number 9 by Sara Jackson, Karen Shooter and Mel Cohen

A gang of friends who happen to have genetic disorders turn their “disabilities”into superpowers.

Goodbye Daisy by Steph Nimmo

A story book written to help children with disabilities understand bereavement. Steph wrote the book after her own daughter died from complications of a genetic disorder.

Books FOR ADULTS

Far From The Tree by Andrew Solomon

Solomon interviewed more than 300 parents for his study of parenting children with “difference”. This includes many forms of learning disability, genius and physical difference but is fascinating.

Shut Up About Your Perfect Kid by Gina Gallagher and Patricia Konjoian

Sisters Gina and Patty speak honestly and with great humour about the frustrations, sadness, and stigmas they face as parents of children with disabilities (one with Asperger’s syndrome, the other with bipolar disorder). They offer strategies to cope.

How To Raise A Happy Autistic Child by Jessie Hewitson

Best-selling author David Mitchell describes Times journalist Jessie’s book as: “A wise SatNav for what is often a bewildering, or even scary, zone of parenting. The book offers real-world, road-tested, child-first and family-friendly advice; while also highlighting the twin truths that autism is not a tragedy, and that adaptation and acceptance are not resignation.”

Many parents find it very difficult and, at times, emotionally painful, to talk to their child about a genetic diagnosis. We understand how hard this can be and we have put together some tips to help you.

Why tell your child about the genetic condition

• Research shows that children who know about a genetic diagnosis often cope better emotionally.
• Children report generally positive feelings about being told about the genetic condition.
• There is little evidence that any emotional damage results from telling a child about a genetic diagnosis.
• If the genetic diagnosis has been a family secret, this puts the child in a difficult position.
• Openness about a genetic condition in the family increases children’s coping, improves their attitude towards the condition, reduces stress and results in fewer psychological issues long-term.
• Children naturally look for the positives and rarely let a condition become a central focus in their lives.

When to tell a child

• There is no perfect age, but family experiences and current research suggest it is best for children to learn about a genetic condition gradually throughout childhood.
• Receiving this kind of information as younger children is less shocking.
• Not informing children until they are approaching adulthood can affect their coping, self-esteem, identity, reproductive decision making and family cohesion.

How to tell a child

• Keep it simple.
• Give small amounts of information at a time.
• Take into account their age and individual developmental stage.
• Go at the child’s pace – learning about a genetic diagnosis and becoming aware of the implications is a process that takes time.
• Check their understanding and correct any misperceptions as you go along.
• Make the conversations informal, discuss the genetic condition while doing something else with your child, for example, when driving somewhere in the car, when cooking a meal together or playing a game.
• Where possible answer your child’s questions as they arise.
• You don’t have to have all the answers, you can learn together with your child.
• Ensure there is opportunity for continued discussion.
• Rather than focussing on the genetic test and the best time to carry it out, focus on family coping and coming to terms with genetic information.
• Young people have said they find it beneficial to meet with a healthcare professional, such as a genetic counsellor, to discuss the genetic diagnosis and the implications for them. You can request a referral for genetic counselling from your GP.
• It is helpful to encourage and support young people to make their own decisions about treatments, genetic testing and care provision. This appears to encourage young people to discuss information and their thoughts about the genetic condition with their parents and usually to follow their parents’ advice.

LINKS

Sibs https://www.sibs.org.uk/

Carers UK https://www.carersuk.org/

Eur J Hum Genet. 2011 Jun; 19(6): 640–646. Parents’ and children’s communication about genetic risk: a qualitative study, learning from families’ experiences. Alison Metcalfe, Gill Plumridge, Jane Coad, Andrew Shanks and Paramjit Gill. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3097166/

There are many organisations that offer grants to adult with genetic disorders. We have put together a list of some of these groups.

The ACT Foundation http://www.theactfoundation.co.uk can provide small grants of up to £2,500 towards home modification. 

The Barchester’s Charitable Foundation http://www.bhcfoundation.org.uk/who-we-fund

favour applications from over 65’s that help improve people’s mobility, independence and quality of life. Applications need to be supported by a professional such as GP, social worker or advice worker (Age UK / Citizens Advice).

Aid for the Aged in Distress http://www.agedistress.org.uk/how_we_help.html offers support to people over 65 with no/minimal savings and will consider grants for equipment including scooters / mobility aids / household items. It is one of the few charities that accepts applications from individuals, although they also ask for a letter of support from a professional. The link takes you to the how we help section, which gives details of previous things they have funded.

Friends of the Elderly http://www.fote.org.uk/our-services/grants/ require an application through a third party but this could be Age UK or Citizens Advice Bureau. They offer grants to people over 60, including for mobility aids or housing adaptations. They consider applications from people with savings below £4000.

The Hospital Saturday Fund http://www.hospitalsaturdayfund.org/index.php?option=com_content&view=article&id=47&Itemid=65 offers grants for individuals again via an application from a health professional, Age UK or Citizens Advice. They will fund equipment but also consider funding respite breaks at therapeutic centres.

The Heinz, Anna and Carol Kroch Foundation provides grants for individuals suffering from severe poverty or on-going medical conditions. Grants of £100 to £500 are provided towards hospital travel costs, household items, adaptations or disability equipment. They will not fund holidays or education.

Applications must be made in writing by a recognised professional such as a social worker, doctor or Citizen Advice representative who must include the individual’s financial information.
Letters must be addressed to: The Heinz, Anna and Carol Kroch Foundation, PO Box 327, Hampton, TW12 9DD Telephone: 020 8979 0609 Email: hakf50@hotmail.com

Independence at Home http://independenceathome.org.uk/ offers funding of up to £2,000 towards the cost of equipment and home adaptations.

Margaret’s Fund http://margaretsfund.co.uk/provides small disability grants to women for equipment

The Mobility Trust www.mobilitytrust.org.uk provides equipment such as wheelchairs and mobility scooters following an assessment by an independent Occupational Therapist (OT) sent by the Trust.
The OT will then prescribe the most suitable piece of equipment for an individual.
Equipment is only provided if it is not available from statutory sources or the disabled person is unable to purchase for themselves.

To apply write a letter outlining why you need the equipment and details of your disability to Mrs Anne Munn, Mobility Trust, 17b Reading Road, Pangbourne, Berkshire, RG8 7LR.

RABI http://rabi.org.uk/ offers equipment grants to farming families with a financial need.

Saga http://www.saga.co.uk/saga-charitable-foundation/saga-respite-for-carers-trust/carers-trust-articles/how-to-apply-for-the-saga-respite-for-carers-trust.aspx offer a respite package to carers nominated for a break, which includes payment of care and a holiday for carer.

The Respite Association http://www.respiteassociation.org/Home.aspx offered a variety of grants for care either in one go or on a regular basis for a limited time .

Disability Grant UK http://www.disability-grants.org/grants-uk.html All across the UK there are many small charities and trusts that provide grants for the benefit of local residents and community groups. To qualify you may either have to live or work within a specified town, area or region.

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