At a certain age, it can be a good idea to talk directly to your child about their disability. Talking to them about their disability may seem like an uncomfortable or difficult discussion. As a primary caregiver, it’s important to you to make them feel safe and loved. You can start by telling them about their strengths. What do you love about them? Are they kind? Are they thoughtful? Are they dedicated to a hobby or school subject? Highlight those things first. Ask them what they like about themselves. Share stories from others who have noticed wonderful things about them.
You may ask why you need to discuss their disability with them. As they get older and experience more social situations, others may begin to bring up their disability to them, especially if it’s visible, but even in some situations if it’s less visible. Discussing it with them before others do can give them the confidence to approach such situations with strength and positivity. If surprised by a well-meaning family member or friend, or even a not-so-well-meaning stranger, your child might feel scared, sad, or angry. Having an open dialogue about the disability in a safe space could help your child understand why they are special and unique rather than feeling odd or strange.
A child with a severe learning disability may think she’s stupid. A child who presents with physical disabilities may observe that he walks or talks differently but doesn’t understand why. You don’t have to have all the answers and understand the disability at a medical level. Explain what you know, in terms that are developmentally appropriate for your loved one. Turn to a trusted professional in your child’s life – maybe a speech, physical, or occupational therapist or a teacher – to help if you need it. The professionals can support your knowledge of the disability regarding the emotional, sensory, physical, intellectual, or communicative aspects.
Once you feel your child is comfortable with the topic, brainstorm situations where they may encounter discussing their disability with others. Come up with a plan for what they can do or say. Teach them they are allowed to explain they would rather not discuss it with others, especially strangers. Ensure them they are not obligated to explain themselves to anyone if they don’t feel comfortable.
When your child understands as much as they can about their disability, discuss the purposes of therapy and other services at school. Ask them to share what they enjoy and what they dislike, what is easy and what is hard. Talk about what goals are being addressed and why. Empower them to take an active role in creating and targeting goals. Your child can even be involved in their own IEP meeting.
It's important to remain calm and positive while also being realistic. Keep the conversations short and follow your child’s lead for how much information to provide at once. Try to manage your personal concerns and stresses so you can model acceptance and hope realistically. Open communication with your loved one is the best way to make them advocate for themselves and to know how deeply they are loved.
At About Kids Home Health Care, we are here for you and your child. We have the resources you need and are always happy to answer any questions you may have.