As your child matures, they will likely develop new questions or concerns about their disability. The way you approach these conversations will greatly influence how your child feels about themself and their potential.
Acknowledge Your Child’s Disability
Sometimes, guardians and parents avoid conversations about a child’s disability. They fear bringing up the subject will make their child feel bad or that it will cause a child to think they can’t succeed. But ultimately, ignoring the topic does kids a great disservice. A child who isn’t told they are autistic may not understand why they struggle with peer relationships. They may make incorrect assumptions about themself and grow to believe they’re unlikable. Similarly, a child who isn’t aware they have been diagnosed with a learning disability may think they’re unintelligent. But learning that their struggles stem from a learning disability that causes them to learn a little differently than most of their peers may cause them to feel relieved. Acknowledge your child’s disability and be willing to talk about it.
Timing Matters
There are several types of disabilities—emotional, physical, intellectual, and sensory. The type of disability your child has will play a big role in how you approach the subject. The timing of when you and your child learned about their disability will also be a factor in your conversations. If you learned about your child’s disability the day they were born, you’ll have a much different experience from parents and guardians who are learning about a child’s disability when they are 10 years old. Your response to your child’s disability will influence the way your child views themself, so it’s important to send a message that acknowledges the barriers your child faces, while also letting them they are a capable kid who has much to offer the world.
Be Matter of Fact in Your Conversations
Putting too much emotion into your conversations will influence how your child feels. Expressing sadness over barriers in their life or anxiety over their future could cause your child to experience those emotions too. Present information about your child’s disability in a matter of fact manner. Talk about the science behind your child’s disability, or acknowledge that while other kids can take the stairs, they need to use an elevator. But don’t insert too much opinion about those things. Steer clear of lengthy lectures and long-winded inspirational speeches. Your child will learn more about their abilities and their future potential based on what you do, rather than what you say.
Be Honest but Keep Information Age Appropriate
When your child asks questions about their condition or their prognosis, be honest. Just make sure the information you share is in a kid-friendly manner. A 4-year-old who asks about their genetic condition won’t understand the neuroscience behind their disability and a 10-year-old doesn’t need to know about all the latest medical research behind why they take a certain medication. Give your child simple answers to their questions. If they want more information, they’ll ask more questions—or they’ll ask the same question again in a different way. In simplest terms, you can use phrases like, “Your muscles struggle to work with your bones,” or “This medicine helps your lungs work better.”
Invite Your Child to Ask Questions
Your child’s questions about their disability will change over time. When they enter puberty or when they begin to think about career options, they’ll likely have new questions. Make it clear that you’re happy to answer questions any time and make sure your child knows they can ask other people questions too—such as their physician or other members of their treatment team. Help your child identify trusted adults who will be willing to answer their questions.
Talk About Who Is Helping Your Child
Rather than focusing on all the ways your child needs care because of their disability, talk about all the people who are making a big effort to help them. Discuss how scientists are researching the condition and what they’re hoping to discover. Also, talk about how their physicians, therapists, teachers, and coaches are invested in helping them reach their greatest potential. Remind them there are many people on their team supporting their efforts.
Help Your Child Identify What to Say to Others
Other kids at school—and perhaps even adults in the community—may ask your child questions about their disability. While your child doesn’t owe anyone any explanations, helping them develop a script to respond to questions can help them feel more comfortable if they choose to respond. Ask your child what they would like other people to know. A child who can say, “I have Tourette’s Syndrome. That’s why I twitch sometimes,” may be able to stop a bully in their tracks. They also may be able to put an end to the rumors others are spreading about them. Help them practice it with you and talk about whether it’s working for them when they use it with other people.
Focus on Your Child’s Strengths
Invest a lot of time into talking about your child’s strengths. Tell them and others that they are good at math or a talented artist. Make sure they know that a disability doesn’t have to keep them from succeeding in school or excelling academically. They might just need some extra help in reaching goals. Talk about all the things they’re good at and remind them of all the things you love about them. A child who can recognize their own skills and talents is much more likely to feel competent and confident.
Identify Healthy Role Models Your Child Can Relate To
All children feel discouraged and frustrated sometimes. But for kids with disabilities, those feelings can become pervasive. Identifying healthy role models with a similar disability can help your child feel inspired. If there are athletes, musicians, actors, or successful entrepreneurs with a similar disability, introduce them and their accomplishments to your child. If you know an adult in the community that happens to have the same disability as your child, respectfully ask them if they wouldn’t mind meeting with you both. Seeing and interacting with adults who have similar life experiences as them can be life-changing for a disabled child.
Seek Support for Yourself and Your Child
Seek advice from the professionals who work with your child. Your child’s pediatrician, speech therapist, physical therapist, or special education teacher may be able to offer more specific insights into how to talk to your child about their disability. Talking to other parents who understand what your family is going through can also help you feel more confident in the conversations you are having with your child. Consider joining a support group—either in-person or online—where you can talk to other parents of children with similar disabilities. More importantly, read articles and blog posts by teenagers and adults who have your child’s disability. Many disabled children grow up mistreated and lacking important life experiences despite the love and good intentions their parents had concerning them. That unfortunate reality is because their non-disabled parents treated them how other non-disabled people recommended they be treated. Read articles and listen to interviews, videos, and podcasts of and by disabled adults describing “what they wish their parents knew” or “what they would say to their younger selves.” It is also important to: introduce them to media featuring disabled children and adults because representation matters; and connect your child to groups and communities led by disabled people and predominantly made up of disabled children. So talk to your child if they’re interested in meeting other kids with a similar disability at a theater camp, a rec club, a summer camp, etc. If they’re interested, work to facilitate these interactions. Spending time with other kids who have experienced similar lived experiences could be instrumental in helping your child reach their greatest potential. If your child’s disability has a culture surrounding it (ie. Deaf culture, Deaf-blind culture), make sure you and your child are involved. It is also important to keep in mind how much room you as a non-disabled person are and should be taking up when you are in such spaces. Remember that you’re there to support your child and to learn, not to dominate. Unless you have a similar disability, there are just issues and experiences your child has that you just won’t be able to relate to, so it is paramount that you introduce disabled people into your child’s life that make them feel the opposite of “the odd one out.” Providing them with a network made up of non-disabled and disabled people as well as being there for them is critical to affirming your child and their disability.
