Emotional support for families of a disabled child

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.

Support groups for parents

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 online community of parents

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.

You may prefer to watch videos of parents sharing their experiences instead. Try searching ‘parent of a disabled child’ on YouTube.

Being a parent can be hard. Looking after your mental health and wellbeing is important. Everyone manages their mental health differently. 

If you need support, here are some things you could try:

Managing your mental health 

Support groups for parents

Helping your disabled child sleep

If you are thinking of finding a private counsellor or therapist, there is a cost.

Find a therapist (The British Association for Counselling and Psychotherapy)

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:

• keep communicating
• talk about how you feel and anything you find difficult
• avoid blame
• 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

Coming to terms with your child’s diagnosis

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.

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

Storybooks for siblings (Pinterest)

Storybooks featuring disabled children

It can take some time to talk to friends and family about your child’s condition. There is no right or wrong way to do it. Tell your friends and family what you need from them.

Asking for help can be hard. But if friends, family or even a neighbour know what you need, they are more likely to offer support. Even if it is to talk for 5 minutes.

Getting some rest and looking after your mental health can help you and your family manage.

If you can, try taking a little time off. Try relaxing by:

• going for a walk
• watching TV
• reading a book or magazine
• catching up with friends

Managing your stress when caring for your disabled child

If you care for a disabled child, you can have a parent carer’s assessment to see what support might help make your life easier. 

Carer’s assessment

Respite care, also called short breaks for carers, is temporary care that lets you take a break from looking after a disabled child. It is there to support your wellbeing and health. 

Respite care