Getting support from and giving support to friends, family and other parents
Your whole family may need support with the emotional and practical sides of living as a family with a disabled child. There’s no right or wrong way to feel and everyone does things differently.
Emotional support from other parents
Talking to other parents in a similar situation is often the most effective emotional support. You can read parents’ stories and conversations online if you do not feel comfortable talking.
Not all conditions or experiences will be the same, especially if your child’s condition is rare or undiagnosed. But parents of children with different conditions can still support you.
Connecting with parents
Some charities and voluntary organisations can give you extra support with your child’s condition and connect you to parents with similar experiences. Some people prefer to talk face to face while others find it easier to chat online.
How to find support groups.
Support for syndromes without a name (SWAN), rare, or genetic conditions
Read other parents’ stories
Reading about similar experiences can help you find out which challenges parents faced, how they tackled them and how they felt.
Some disability charities have parent blog posts and articles. Check the charity website for a blog, news or advice and support section.
Scope’s news and stories section has guest posts by parents on different topics. Try Toast, one word which holds so much meaning.
A charity dedicated to ‘the voice of learning disability’, Mencap has stories from disabled adults and parents of disabled children.
Parent blogs and videos
Some parents have their own blogs and share posts about their journey. Try searching ‘blogs by parents of a disabled child’ in your search engine. Mumsnet also has a list of blogs in their ‘bloggers network’.
You may prefer to watch videos of parents sharing their experiences instead. Try searching ‘parent of a disabled child’ on YouTube for video blogs (vlogs) and parent stories.
Looking after your disabled child can be hard and may affect your relationship with your partner. Adjusting to and managing your child’s condition day to day can make it difficult to have time for each other.
There are a few things you can do to support your relationship:
talk about how you feel and anything you find difficult
trust your partner and use each other’s strengths
make sure both of you help care for your child even if you do things differently
ask friends, family or neighbours if they’re happy to help out for a while so you can spend time together a couple
take it in turns to get up at night where possible
Helping your partner
Coming to terms with your child’s diagnosis
Sibling and family support
Your other children may feel confused or overlooked. Try to share information about your disabled child’s condition. Children often understand more than you realise.
Explain what makes their brother or sister different and how they can communicate with them. Take a look at storybooks for siblings on our Pinterest board.
Answer questions where you can and tell them how they can help if they want to. Siblings sometimes feel left out because they want to help. Sometimes they prefer not to help. Give them the choice.
Try to do family activities that include everyone, like playing a game. But aim to spend some quality time alone with each of your children too.
Some organisations or parent groups arrange days out or events for the whole family, such as picnics. This is a good chance for children with the same condition to meet and play. It also lets brothers and sisters do the same with other siblings of disabled children.
Balancing caring for siblings
Sibs charity for brothers and sisters of disabled children and adults
Take time for yourself
Some emotional support comes from taking time for yourself. Look after your mental health and take a short break if you can. Even if it’s just ten minutes.
Try mindfulness and doing activities unrelated to disability. For example, your favourite hobby or catching up with friends. Try not to feel guilty about taking time for you. Taking care of yourself will help you take care of your child.
How to find respite care.
Taking a break and managing stress
Last reviewed by Scope on: 24/10/2018