Talking to Siblings About a Disability

Overview

If you have children with and without disabilities, at some point your children will get curious and start asking questions about each other.

A child might ask questions openly about their sibling’s disability or special health care needs. Or, depending on your child’s age and personality, they may keep their questions to themselves. One thing is for sure: the questions are going to be there, waiting to be answered.

Your child wants and needs to talk to you about this and get your direction. If they don’t have an explanation for what’s going on with their sibling, they will probably find or create their own answers. They might make up answers completely or believe negative things they hear from other children or adults.

These make-believe thoughts and stories can shape their feelings about their sibling and the relationship the children have. Many children feel fear, anxiety, or guilt if they do not fully understand things. However, with honest and open conversation, you can help your child build empathy and learn about their sibling’s disability or special health care needs.

It’s not always easy for parents to explain what’s going on – let alone in child-friendly words. You might still be trying to understand your child’s disability yourself and thinking of the right words to use to tell others. Your child with a disability or special health care needs might not have a diagnosis yet, and even if they do, maybe you’re not ready yet to talk about it by name.

We’ve talked to many families who have also gone through this and we’ve read tips from other experts to put together some suggestions for you.

Starting the Conversation

Children are little sponges, taking in everything around them. A child will notice and feel different things about their sibling’s disability based on age, birth order, the severity of their sibling’s disability and medical needs, and even your attitude.

To help you start the conversation, here are some common questions children often have:

• Why is my sibling like that?
• Am I going to get what my sibling has?
• Are there other kids who are like my sibling?
• How should I play with my sibling?
• What about me? Is it okay if I want attention too? How do I get it?
• Am I supposed to take care of them?
• Is any of this my fault?

By talking through these questions, your child can start to feel more confident, empathetic, and even proud of their sibling’s strength and achievements. This might not happen in a single conversation or even in a few. Learning about each other is something that takes time.

See our Siblings of Children with Disabilities page for more ideas on supporting your children.

Leading the Conversation

Your child’s questions might pop up at an unexpected time: in the car, at the grocery store, or in front of a big group of people. Or your child might never ask you anything and avoid the issue. They might just assume that their ideas about their sibling are true.

But that doesn’t mean that they don’t need help understanding what their sibling is going through. They will be observing and forming ideas about their sibling’s disability or special health care needs. And your support is so important.

No matter what your child thinks now, you can meet them where they are. We have ideas from parents and other experts on how to have these conversations:

• Stay as calm as you can. This isn’t always easy, but your child will be looking at your feelings to figure out how to feel. It’s okay to show your real emotions, but staying low-key goes a long way in helping them become comfortable with their sibling. And it goes a long way in helping them build patience, love, and acceptance.
• Find out what they already know. Maybe you’ve heard your child talking to friends about their sibling, and what they say tells you a lot about their understanding. Or you can ask them to explain what they think to you and offer ideas, including what to say to friends and others.
• Stay age appropriate. A child who is 3 years old probably isn’t going to understand genes and chromosomes. But they can understand that everyone is different, and that’s okay.
• Don’t worry about explaining everything at once. Your children are going to live with each other for years. You’ll be talking to them about their sibling many times.
• Help them understand their role. Your child’s job is to be a good brother or sister. It will help them to know how they can help out. You can tell them what they are or – maybe more importantly – are not responsible for doing. That will let them build confidence in their sibling relationship.
• See if you can find books or a guide to help you and your child. (See the links below for ideas.)

If you are finding it tough to have this conversation, you can connect with other parents of children with similar disabilities or with families who have walked this journey ahead of you.

It may also help your child to meet other children who have siblings with similar disabilities or special health care needs. You can search our Find Services, Groups, and Events page to find support groups in your area.

The Importance of Using the Name of the Disability

We don’t want our children defined by their disability or special health care needs. Whatever the diagnosis, it’s only part of who your child is. You might be tempted to avoid using the proper name or bringing up the subject of their diagnosis at all. But this might just get confusing to your child.

Using the name of your child’s disability or diagnosis helps everyone get comfortable with it and sets a great tone for the sibling relationship. If your child knows the right terms to use, they will have tools to learn more on their own and be an advocate for their sibling.

One approach is to include the diagnosis name or medical terms in casual conversation. For example, you might be explaining why you’re going to a therapy or doctor’s appointment, talking about something new you’ve learned, or just answering a child’s questions. This helps your children know that the name of the disability isn’t a “bad word” and that their sibling isn’t a bad person for having it.

Your children will have a lifetime together, and acting early to help them understand each other sets the stage for years to come.