Image: J E Therlot
Alison Thomas worked in the House of Commons for many years before eventually leaving to care for her disabled son. She chaired a disabled families parent forum in Greenwich for many years, which led her to co-found the charity FairFun. She continues to work with and campaign for the rights of disabled children and their families. Here, she shares her advice on managing family life as a parent of children with and without disabilities.
What’s the best way to talk about your child’s disability with their siblings?
Be honest! Try to explain any diagnosis or care plan to your children in an age-appropriate way. If your children know about their sibling’s condition from the outset there will be no sudden surprises or misunderstandings, which can often lead to children feeling left out and worried. Often professionals involved in your child’s care or specific support groups around your child’s condition can provide help and advice.
Children often pick up a lot more than you realise, so always encourage them to ask questions and voice their concerns. It's important that they understand what their sibling’s disability is and how it affects them and the family. If they know their sibling’s limitations and the reasons for them, they are much more likely to be understanding towards their sibling.
It can be hard to make your children without disabilities feel like they’re getting enough attention. What are some strategies for dealing with this?
It may seem a difficult juggling act, but try to set aside time specifically to spend with your non-disabled child, even if it’s for a short period – once a month at the cinema, for example. This might involve you and your partner splitting time between children, or making another short-term care arrangement for your disabled child.
If this isn’t possible, try asking your non-disabled child to make suggestions about what you might do together as a family. It is always good to make them to feel involved, rather than on the outside looking in. They might even surprise you and come up with inventive suggestions that you would never have thought of for your whole family to enjoy.
Children often worry unnecessarily when they don’t fully understand what’s going on. Try to involve your non-disabled child and explain any situations that might come up with their sibling's care. It's better to involve them whenever you can so that they feel included.
How can you help young people manage some of the feelings that might come with having a sibling with a disability?
Make sure they know they can always talk to you about their feelings. Assure them that it’s normal for them to sometimes feel embarrassed, jealous, guilty or unsettled by their sibling. These emotions are to be expected sometimes, especially once they have their own friends, but they need to talk them through. Many areas have sibling groups which can be a good way for children to come together, talk and support each other – check with your local authority or appropriate charities to see if there are any near you.
Do you have any advice on making time for family activities or finding appropriate things to do together?
Some families really struggle to do this. You need to find something that works for your family. It can be something as simple as going for a walk with one child in a wheelchair and the other cycling alongside or flying a kite, or it could be more structured.
It’s important to remember that family days out can be stressful for any family, but extra planning is essential for families with a disabled child. Make sure you know what facilities are available to help you and always have a quick exit plan just in case. Try to keep your sense of humour.
Sometimes it might just not be possible to spend a family day out together. In this case, try to find organised activities that your non-disabled child can take part in and enjoy with other children.
Can you recommend any good resources/support networks/organisations for siblings and families of children with disabilities?
SIBs – an excellent charity supporting siblings and parents of disabled children. They provide information for both siblings and parents and has online help forums for siblings.
If your local authority has a Family Information Service or Children with Disabilities Team, check to see if they provide information on support available to you locally. You might be able to find out about short breaks and/or respite care, clubs, activities and where to get advice.
Contact a Family provide a useful leaflet for families which includes an excellent list of books to support parents to give to siblings to read.
Specific disability support groups often have information and booklets for affected children and siblings. You can call the Contact a Family helpline (0808 808 3555) to find out if there is a support group for your child’s condition.