Talking about your child's disability

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• Why can it be hard to talk to others?
• Who should I talk to and why?
• Tips for talking about the diagnosis

Why can it be hard to talk to others?

• You might be still coming to terms with the diagnosis and all the feelings it’s stirred up. 
• The diagnosis may be complicated, and you may be trying to understand it yourself before you talk to anyone else about it.
• You may be asked about the diagnosis by people you don’t want to talk to.
• You want to sound positive and optimistic, but you might not feel that way.
• You may be concerned about people’s reactions.

Who should I talk to and why?

Your child is a major part of your life, so those close to you need to know what the diagnosis means for you. The act of talking might even help you to accept it. The more other people understand about your child and you, the more likely they are to support you.

Your partner
Each parent will respond differently to a diagnosis of disability. Even a strong relationship can feel the strain, so talking to each other is critical. Here are some ideas:

• Accept that there’s no ‘right’ way to feel.
• Be tolerant of your differences.
• Be open and honest about your feelings.

Your other children
Regardless of how old they are, brothers and sisters are likely to have questions, concerns and strong feelings. Children need to believe that their parents can cope, so when you talk to them, keep these tips in mind:

• Be honest about the diagnosis, telling them things in a way they can understand.
• Share some of your feelings with them, but try to be positive and optimistic.
• Talk about how the disability might affect them.  
• Encourage children to talk about their feelings and to ask questions. The more they understand, the more secure they are likely to feel.

Your family and friends
If you let your close friends and family know what’s going on, they can offer you emotional support, as well as help you out in practical ways. Being able to talk with you about your child will help them understand and accept her for who she is. And having people who understand your situation will help you feel less alone.

Other parents of children with disabilities
You might find lots of support and information from other parents whose child has been diagnosed with the same condition as your child. Listening to their experiences, their own highs and lows, and how they have handled negative reactions from other people can be reassuring for you, whether their child's diagnosis is recent or longstanding.

Tips for talking about the diagnosis

• Tailor what you say and how you say it to the listener and their relationship to you and your child. Don’t say more than you want or need to say.
• Prepare any basic information you might need before you talk to others, including things such as specific information about the diagnosis, how it’s likely to affect your child and your family now and in the future, the services your child requires, treatment they are receiving and your need for support.
• Stick to the facts unless you want to share your concerns and feelings.
• Try to talk in ways that focus on your child’s strengths, not just on the disability. You may want to emphasise that your child is a child first and foremost. Her disability is only one part of who she is.
• Don’t ask for or invite advice unless you really want it. When it comes to diagnosis and treatment, seek advice only from those qualified to give it.

A few things can make talking difficult:

• talking before you’re ready to talk
• becoming emotional in front of others (this can happen when you're not ready to talk)
• feeling pushed to say more than you want to
• talking about issues you’re not comfortable talking about.

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