Talking to family and friends about your child’s disability can help them understand your child and your family situation. But what you talk about, how much you say and who you talk to is up to you.
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 spouse, talking together 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 too.
Talking about your child’s disability: when, who and what
When you start talking about your child’s disability, who you talk to, and what you say is 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 caregivers 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 spouse or another adult.
It can help if you and your spouse 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 Zhe Ming 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 about your child’s disability
You and your spouse 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 spouse 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 down 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’.
Your typically developing 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 typically developing child might ask questions like ‘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 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 angry when Shanti pulls your hair’. You can also share some of your feelings with your child, including your sadness and frustration as well as pride and joy.
You could talk about how the disability might affect everyday family life – for example, ‘You’ll need to be patient when you play with Raj. He needs to practise taking turns’.
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, and talk about what would help you.
For example, ‘Kai Li 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 Kai Li. 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 hurtful and upsetting ways. This can be hard if it comes from family or friends, and you can feel cut off from them.
Other parents of children with disability
It often helps to get support and information from other parents of children with the same disability as your child. Listening to their highs and lows and how they’ve handled negative reactions from other people can be reassuring.
Sharing the deep and conflicting feelings you might experience with others who’ve felt the same can create strong bonds and help you adjust.
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. 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, ‘Siti really likes Lego®. She can build amazing towers. She’d like you to say hello in the morning and play blocks with her’.
Why it can be hard to talk to others about your child’s disability
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.
© raisingchildren.net.au, translated and adapted with permission