The delights and demands of caring for a disabled grandchild

Support for grandparents from disability charity Contact

National disability charity Contact supports the whole family of children with disabilities. They do this by offering life-changing information, advice and support for families, whatever their child’s disability or medical condition - and this includes support for grandparents.

Anna Bird, CEO of Contact tells KtoA Magazine: “We know that many grandparents play a very important role in their disabled grandchild’s life and that of their parents, providing considerable emotional and practical support particularly at times of crisis.”

To help, Contact has produced an online guide aimed at grandparents which includes tips and advice from other grandparents who have been there, as well as information about legal positions and financial support.

Supporting your disabled grandchild

A grandchild might see you as a person with whom they can have fun, and you have all the pleasure of being with children without the responsibilities of being a parent. Sadly, families with a disabled child are often placed under huge practical, physical, financial and emotional pressures which can have a big impact on the wider family.

As a grandparent, you may find yourself in an unfamiliar and sometimes difficult situation.

We understand how challenging the role of being a grandparent of a disabled child can be. For example, grandparents can sometimes find that the disabled child’s parents, alongside siblings and other relatives, look to you for information and support – and this may happen while you are trying to come to terms with the news that your grandchild has a disability yourself.

Contact’s top tips for supporting your disabled grandchild:

• Treat them as an individual. A child with additional needs has the same need for acceptance, love and attention as any other child.

• Try not to make comparisons. Your grandchild may not be picked for the school football team or reach Grade 7 piano, but they are putting in as much effort. They will gain immeasurably from praise and encouragement.

• Develop a unique relationship. It might be going to a cafe or reading together or learning a skill like swimming. This kind of attention will be a real boost.

Learning about your grandchild’s condition

CEO Anna says: “Contact’s Helpline often hears from grandparents looking for information about their grandchild’s condition. Learning more about this can help you feel empowered and mean you are better able to support the whole family.”

We have an A-Z medical directory with reliable medical information on more than 440 medical conditions including rare disorders, plus contact details for specific UK support groups.

Supporting your grandchild’s parents

When you’re a mum or a dad and you see your children in trouble, you want to reach out and make things better. It’s the same with grandchildren too – but you may find you have less influence as a grandparent. Your role is to be supportive, but at the same time, to not get too involved. This means being a grandparent of a disabled child can sometimes be a difficult balancing act.

Anna continues, saying: “Grandparents also tell us that they can feel isolated and confused, and don’t have the support they need to understand the reasons behind their grandchild’s disability or to manage daily challenges and future situations their family may face. That’s why we published our grandparents guide to help them deal with issues that arise and full of tips, advice and sources of support. Often it may be as simple as just being there and listening and to help soak up the stress and worry the parents are having to deal with.”

Contact’s top tips for supporting your grandchild’s parents:

• Listen to the parents and believe what they tell you about their child.

• Praise and encourage, and not just when things are going well.

• Spend the first five minutes of your visit giving attention to your grandchild’s siblings, and maybe take them out while their parents look after their brother or sister.

• Help in small ways: make a meal, do the shopping or babysit so the parents can take a break or deal with social, health and other services.

• Don’t assume that information about entitlements and rights automatically be given to the parents – do some research.

Find out more about Contact at www.contact.org.uk

Their helpline advisers can support you with any issue about raising a disabled child. You can ring Monday to Friday, 9.30am-5pm on 0808 808 3555.

Gwen and George’s story...

“It came as a shock when Danny was diagnosed with autism at around age three and when his younger brother Sam was born with multiple disabilities. We quickly tried to adopt a supportive role. This was easier when we lived nearer and when both the grandchildren and ourselves were younger. We could help by taking Danny and his sister Rowena out, perhaps to the seaside for a picnic, or take all the children for a local walk. On visits, we were also able to help with gardening, the inevitable mountains of washing and other chores.”

“We’ve always tried to treat the boys as precious individuals with some unique characteristics. More than once, we’ve been caught out by underestimating our grandson Danny’s capabilities and understanding – often to his own advantage! On one outing, one minute he was happily paddling with us at the water’s edge, the next he was swimming out to sea!”

“Being grandparents to two boys with special needs has also led to us broadening our experiences. We have helped at a club for disabled people, completed a Makaton signing course, and been to talks about autism and genetics. All this has helped us come to terms with the situation.”