7 Ways Parents Can Support Their Children With Disabilities
Parenting a child with a disability may feel like uncharted territory. You’re suddenly thrust into a world of medical terminology and therapies and a whole new community with its own beliefs and preferences. If your child is newly diagnosed, it may be hard to know how best to support them, but with time, you’ll learn what they need. Until that time comes, here are seven things parents should know about parenting children with disabilities.
1. Respect your child’s privacy.
It may feel tempting to share all of your child’s milestones and setbacks on social media, but remember that they also deserve privacy. Until your child can express how they feel about you sharing their medical history or developmental milestones with others, keep in mind that medical information is private, and some of your child’s symptoms may feel frustrating or embarrassing for them to cope with. Ask yourself if you would have felt comfortable with your parents broadcasting a meltdown or accident when you were a child — and if the answer is “no,” don’t post. If your child can’t consent to sensitive information being shared, then don’t share it with others.
2. Validate your child’s feelings about their disability.
Living with a disability can be frustrating and painful, especially for children who are newly learning how to navigate their disability identities and manage their symptoms. While it may feel helpful to remind your child how much they have to be grateful for or incorporate your religious or spiritual beliefs, your child most likely craves validation above all else. Ask how your child feels when they share that they’re struggling, and listen attentively. Reflecting how your child feels and acknowledging that their feelings are normal and understandable can go a long way towards ensuring your child with a disability feels comfortable discussing their condition — and the emotions it brings up — with you.
3. Let your child choose how to identify.
While you may have heard that “person-first” language — which puts the person before their diagnosis — is the most polite way to refer to people with disabilities, deferring to whichever semantics feels most comfortable for your child can help them self-advocate more effectively. Explain that there are many different ways to say that someone has a disability, and try not to take any of them off the table. Once your child knows what all of their options are, let them choose how you and others acknowledge their medical condition. Whether your child prefers “person with a disability,” “disabled,” or something else entirely, how they refer to their own disability should be their choice.
4. Find books, TV shows and movies with disabled characters.
Your child may struggle with feeling “different” or not seeing anyone who looks like them in the different types of media they’re exposed to. Fortunately, though, more books, shows, and movies are starting to include disabled characters and give them multi-dimensional plot lines. Find some books or movies about characters with your child’s condition and explore media about other disabilities too. When you read about, watch and discuss disability alongside your child, they’ll learn to feel more comfortable with who they are — and learn how to treat children and adults with other disabilities too.
5. Let your child choose how much to share about their disability.
If you have a child with a disability, you’ll likely encounter complete strangers who have questions about your child’s condition. After you explain your child’s disability to them at an age-appropriate level, reassure them that they can choose how much — or how little — to share with people who ask them (or even you!) questions about their disability. When you give your child the opportunity to choose how much medical information they want to share, you’ll respect their privacy and allow them to self-advocate — which will help them navigate more complicated self-advocacy in the future.
6. Involve your child in their medical appointments as they grow older.
When you’re used to sharing health concerns and asking your child’s doctors questions at their medical appointments, it can be difficult to transition to letting your child guide the conversation, but it’s an important step to help your child feel comfortable with navigating their own medical care. When your child is able to understand the purpose of their appointments and communicate their needs in any way you can, ask your child if they have anything specific they want to discuss with their doctor or if they want to share what’s happened with their health since their last visit. Deferring to your child will help them effectively address their concerns and give them confidence about their medical appointments as they near adulthood.
7. Connect with adults with your child’s disability — and listen to them.
You may feel afraid of what your child’s future holds or need to talk with someone who understands your child’s experiences, and connecting with adults with similar disabilities to your child’s can help you find peace of mind. When you find adults with your child’s disability, listen to them, especially if they choose to share what their parents did well while raising them or what they wish they could’ve done differently. They may also help you recognize how you currently perceive people with disabilities and teach you how to treat them with the most respect and agency possible. If you have the opportunity to introduce them to your child, take it — your child may take comfort and pride in seeing someone who’s just like them.
Getty image by Fizkes.