Why it’s good to talk about your child’s disability
Your child is part of your life, and the people close to you will appreciate knowing what your child’s diagnosis means for you. The more your family and friends understand about your child and you, the more they can support you.
Talking to friends and family can also help you accept the diagnosis. Talking about your child’s diagnosis might even help it feel real for you.
If you have a partner, talking with him or her can help you support each other through tough times and keep your relationship strong. And if you have other children, listening and talking with them about their feelings is a good way to support them.
Why it can be hard to talk to others
Sometimes it can be hard to talk to other people about your child’s disability. This is normal, and there can be lots of reasons for it:
- You’re still coming to terms with the diagnosis and all the feelings it stirs up.
- You don’t feel ready to talk yet. Perhaps you’re trying to understand your child’s diagnosis first.
- You want to sound positive, but you’re finding it hard.
- You’re worried you might get emotional.
- People you don’t want to share the diagnosis with ask about it.
- You’re concerned about other people’s reactions.
- You feel pushed to say more than you want to.
I didn’t want to talk about it with other people just after the diagnosis because doing that would mean that it was real – that it was true. I was still struggling to accept that it was really true and not just a mistake the specialist had made.
– Parent of a child with disability
Talking: when, who and what
When you start talking about your child’s disability, who you talk to, and what you say – it’s all up to you.
It’s OK to give yourself time to come to terms with the diagnosis – people don’t need to know straight away if you don’t feel like telling them.
And even when you do start talking to people about it, you can set the pace. For example, if you’re finding it difficult to talk to someone about your child’s disability, it’s OK to say, ‘I’d rather talk about this later’.
You’ll need to talk to people about your child’s disability at some stage. For example, your child’s carers and teachers need to know so they can work out how best to help your child. And your family and close friends will probably want to do what they can to help you.
But when it comes to other people, you might decide who to tell based on how close you are to them and how supportive you think they’ll be.
You don’t have to give details about your child’s disability to everyone. Just share as much information as you feel comfortable with. For example, if it’s someone you’re not likely to see more than a couple of times, you might choose to be polite and just give them some basic information.
When you’re working out what to say to different people, you might find it helpful to say it out loud at home. You could practise with your partner or another adult.
It can help if you and your partner share the responsibility of talking to others.
What you say about your child can influence how other people see him and how they talk about him. If you talk about your child’s strengths first and his needs second, you can encourage other people to see him as a whole person, not just a disability or a medical condition. For example, ‘We’re really pleased that Sam has started using words. We’ll be able to teach him to use two words together soon’.
Talking with people about your child’s disability will get easier with time. You’ll become a good judge of who to talk to, what to say and how to say it.
Talking with different people
You and your partner might see your child’s disability differently, which is normal. Accepting each other’s differences can help your relationship. People who feel accepted are more willing to listen and take suggestions on board. Acceptance makes it easier to appreciate the positives and resolve differences, leading you back to greater intimacy and goodwill.
Acceptance can reduce the stress and challenges of working together to raise children. It can also help you and your partner adjust to the changes that having a child with disability can bring.
Talking with each other about your feelings can help you understand each other better. And better understanding can mean a stronger relationship. Using ‘I’ statements can help – for example, ‘I feel a bit low this week because ...’, or ‘I wonder if we could do this differently’.
Listening to each other without judgment is a great way to give each other emotional support. When you’re talking about difficult issues, you can show you’re listening by saying things like ‘I understand what you mean’, or ‘I didn’t realise you felt that way’.
You can read more in our articles on your child’s disability and your feelings and your child’s disability and your relationship.
Your other children
Regardless of how old they are, brothers and sisters are likely to have questions, worries and feelings about having a sibling with disability.
Your child might ask questions such as ‘Did I cause it?’, ‘Will it go away?’ or ‘Will I catch it?’ You might be able to ease your child’s worries by answering her questions as honestly as possible, in language she can understand. Being both positive and realistic about what’s likely to happen in the future with her sibling can also help.
When you encourage your child to share his thoughts and feelings, and when you listen without judgment or blame, you send the message that it’s OK for your child to feel whatever he feels. For example, ‘I understand you feel sad when Violet pulls your hair’. You can also share some of your feelings with your child, including your sadness and frustration as well as your good feelings.
You could talk about how the disability might affect everyday family life – for example, ‘You’ll need to be patient when you play with David. He needs to practise taking turns’.
You can read more ideas for talking with and supporting your other children in our article on supporting siblings of children with disability.
Your friends and family
If you let your close friends and family know what’s going on, they can give you emotional and practical support. Talking with them about your child’s disability will help them understand and develop a good relationship with your child. And their understanding can help you feel connected and supported too.
Your friends and family might not have much experience of disability and might not know what to do. If you felt like this too, you can talk about how you’re all still learning. To build their understanding, it’s a good idea to explain what you know, clear up anything they don’t understand about your child’s disability, and talk about what you’d find helpful.
For example, ‘Charlie has cerebral palsy. That means she can’t control her muscles properly. She works on her movement with an occupational therapist every week’. And you could suggest ways for them to interact with your child. For example, ‘Just play and have fun with Charlie. She really likes books. It would be great if you could read to her’.
Most people will be supportive, sensitive and helpful. But sometimes people will react in ways that you won’t find helpful. There are suggestions for responding in our article on other people’s reactions.
Other parents of children with disability
It’s often helpful to get support and information from other parents of children with the same disability as your child. Listening to their experiences, their highs and lows, and how they’ve handled negative reactions from other people can be reassuring, whether their child’s diagnosis is recent or longstanding.
Sharing the deep and conflicting feelings you might experience with others who’ve felt the same can create strong bonds and help you adjust to your situation.
Your child’s early childhood centre or school
Other children and parents are likely to respond to your child based on what his teachers do. This means your child’s teachers need to have the right information about your child, which you can share with them. You might need to talk with them regularly, and you could even ask your professional support person to talk with them about your child’s diagnosis, treatments, family routines, strengths and learning needs.
You could offer to talk to the other children in class about what your child likes doing. For example, ‘Indira really likes Duplo. She can build amazing towers. She’d like you to say hello in the morning and play blocks with her’.