Why it’s good to talk about your child’s disability

Your child is part of your life. Talking to other people will help them understand your child and your situation, which means they can support you better.

And when you talk to your partner and other children about your feelings, it helps you all understand each other. This means you’re better able to support each other in the short term. It also strengthens your relationships in the longer term.

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. Before too long, you’ll become a good judge of who to talk to, what to say and how to say it.

When
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’.

Who
If you’re close to your family, it might be good to talk to them because they’ll probably want to support you. This might go for your close friends too. Other people will need to know so they can work out how best to support your child. These people might include your child’s carers and teachers.

What
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 very often, you might choose to be polite and just give them some basic information.

When you’re working out what to say to different people, it might help to say it out loud at home. You could practise with your partner or another adult.

It can also 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 your child. If you talk about your child’s strengths first and needs second, you can encourage other people to see your child as a whole person. For example, ‘We’re really pleased that Sam has started using words. We’ll be able to teach him to use 2 words together soon’.

You and your partner talking about your child’s disability

If you have a partner, you might find that you see your child’s disability differently. This is natural.

Talking with each other and listening to each other without judgment can help you accept your differences. And this acceptance can help you and your partner adjust to the changes and challenges of life with a child with disability, learn from each other and work together for your child.

Talking, listening and accepting can be particularly important when you have decisions to make about your child or when times are tough. But it can also be great for keeping you focused on all the positives of life with your child.

Talking and listening can also help you and you partner to understand each other better, which is good for your relationship in general.

Siblings of children with disability

Regardless of how old they are, your other children are likely to have questions, worries and feelings about having a sibling with disability.

Your other children 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 their questions as honestly as possible, in language they can understand. Being both positive and realistic about what’s likely to happen in the future with their 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 they feel. For example, ‘I understand you feel angry when Violet 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 also talk about how the disability might affect everyday family life – for example, ‘Noah is going to have therapy appointments every week. Let’s work out how we can manage the new routine together’.

Close 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, ‘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 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.

Early childhood education, preschool and school teachers

Other children and parents are likely to respond to your child based on what your child’s 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. Or you could ask one of your child’s professionals to talk with teachers 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’.

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 natural, and there can be many reasons for it. For example:

• You’re still coming to terms with the diagnosis and your feelings about it.
• 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

Looking after yourself

If you look after yourself physically, mentally and emotionally, you’re better able to give your child what they need to grow and thrive.

It can help to surround yourself and your child with supportive and helpful people.

And if you’re finding things very hard, or you’re feeling very stressed, anxious or sad, making an appointment with your GP or a local counsellor to talk about things is a very good idea.