by Contact a Family

Having a disabled child in the family has an effect on everyone, not just parents and siblings.

If your grandchild is born or diagnosed with a disability or health condition you may feel increased pressure to provide help and support to your family, even whilst coming to terms with the news about your grandchild’s condition.

Like many grandparents you may already be involved in your grandchildren’s care – perhaps looking after them while their parents are at work. There will be added pressures if your grandchild has a disability and there will be emotions of your own to deal with.

Every family is unique but many families describe their initial feelings as a kind of grieving process which sometimes leads on to looking for someone or something to blame. As a grandparent, if you can respond positively to the fact of your grandchild’s disability, you can influence the adjustment of the parents and of other extended family members.

Many grandparents say that having a disabled grandchild has brought the family closer together. However, not all families have good relationships and sometimes the arrival of a disabled child can add to already strained relationships. As a grandparent you may not always share the same ideas about parenting as your son or daughter and their partner. What is important, however, is a consistent approach with the child. Difficulties can often be avoided by everyone responding to the child in a similar way, particularly for children with behavioural problems.

How can you help?

You may feel afraid and not quite know how to help or get involved but simple things can make a real difference and make life easier for your family. Sometimes it’s the little things that matter like making a meal, doing shopping or babysitting so the parent can take a break.

Support services are not always in place or sufficient. The parents may be struggling even if  they appear to be coping. Dealing with a range of services can itself be exhausting. Some parents might need support in asking for the help they need, such as a short break or applying for benefits.

Information is important too. Often there are support groups for specific conditions offering useful leaflets for families. They might also provide an opportunity for parents to gain support from other parents with disabled children.

There may be some particularly difficult times for parents, such as around the time of a diagnosis, or when no specific diagnosis can be given. Starting school, moving to secondary school and transition into adult services can be stressful times when your extra support may be very welcome.

Siblings

Most siblings of disabled children cope very well with their childhood experiences and sometimes feel strengthened by them. Avoiding family secrets, as well as giving siblings the chance to express their feelings and opinions, can go a long way to help them deal with worries and difficulties that are bound to arise from time to time.

There are of course challenges for siblings. They may not get to spend as much time with their parent/s as they would like or they may feel they miss out on opportunities and activities that other children take for granted.

That’s why it can be so important for grandparents to devote some time to siblings if they can, and to help them enjoy new experiences away from some of life’s difficulties.

Equally supportive, where possible, is taking care of the disabled child for a while, so the siblings can have some precious time with their parents.

Looking after yourself

You may find yourself so caught up in worrying about everyone else that you forget to look after yourself. You may be juggling work and supporting your family, or caring for an elderly parent. Be realistic about the kind of help you can offer and consider your own health and wellbeing.

Tips from grandparents
  • Be led by the parents – they will tell you what they need
  • Listen, be a sponge and don’t be oversensitive; sometimes parents will need someone to let off steam to
  • Offer help, don’t wait to be asked, but be sensitive
  • Focus on the child, not the disability – you can’t generalise about disability
  • Respect that acceptance of the child’s disability may take a long time for parents.
How Contact a Family can help

Contact a Family is a UK-wide charity for families providing support, advice and information to families with disabled children.  Their freephone helpline can put you in touch with other families in the same situation, local or national support groups and give you medical information about your grandchild’s disability.

Contact a Family also has regional offices  providing support and helping you to find out what is available locally.

Contact a Family has a guide for grandparents with disabled children. This is available free from the helpline or it can be viewed on the website.

Contact a Family

Helpline: 0808 808 3555 Monday – Friday 9.30am – 5.00pm
Email: [email protected]
Website: www.cafamily.org.uk