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.
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 for video blogs (vlogs) and parent stories.
Support from your partner
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
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.
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.
Whether it’s about disability or not, 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’s just to talk for 5 minutes.