In honor of Mother’s and Father’s Day, during the months of May and June, we’d like to give all the moms and dads of children with RP and other eye conditions a gift: some free advice from 2 people who grew up with low vision.
Each week, we will be featuring a different tip. We would LOVE your feedback, comments, and any questions you might have.
Tip #5: Talk About Blindness in Positive Ways in Everyday Conversation
Your child’s blindness doesn’t have to be the elephant in the room, even if your child struggles to talk about it. I think it’s possible to help normalize a tough topic when you find ways to bring it into casual conversation. While you don’t want your child’s eyes to be the thing you’re constantly talking about and obsessing over, you also don’t want it to be the thing you never bring up.
Our parents tell us they avoided bringing up our vision loss too much because they could tell it bothered us. I think they were great at picking up on our cues and following our lead, and I’m grateful for that because I think we needed space and time to process it on our own to a certain extent. I think we eventually came to a point, however, where we didn’t know how to process further on our own, which is why it’s also important for parents to take the initiative at times, even when it feels uncomfortable.
If you’re having trouble doing this naturally, it could be helpful to see a counselor as a family, even for just a session or two. My parents took us to a counselor in 8th grade to talk about how we would handle our vision while on a month-long overseas trip that we were preparing to go on without them. My twin sister, parents and I all sat down with a gentleman who was also visually impaired and talked with him for about an hour. The conversation opened up a lot of dialogue, and I remember continuing to talk on the car ride home, telling my parents about embarrassing moments in PE class, things I had felt too ashamed to bring up before. In hindsight, I think our entire family could have benefitted from more regular conversations about RP and blindness, and possibly more sessions with this counselor. I remember the counselor talking about how he and his 11-year-old son took trains and buses together and how much more independent his pre-teen son was as a result of having a visually-impaired dad. I remember feeling comforted by this fact, knowing he was an independent dad who found ways to get around town with his son.
I recently came across an open letter to parents of partially-sighted children (link), written by the mother of a partially-sighted son, who is now grown. I absolutely loved reading this letter and felt like her approach to discussing her son’s vision was spot-on, even though it sounded like her son sometimes became frustrated with how matter-of-fact she treated his blindness. What intrigues me most about her approach is that it started with her own beliefs about blindness and the capabilities of people who are blind. It made me question my own beliefs, even down to my definition of blindness.
I highly recommend reading this letter and using it as a starting point for examining your own thoughts on blindness and some of the opinions and even emotions it brings up. I think it’s easy to say “yes, blind people are just as capable of success as full sighted people.”, but when we really stop to think about blindness and the way it is portrayed in society via the media and public interaction, we may not be as confident in that statement as we thought. Kids pick up on parents’ beliefs and feelings, stated or unstated. Even when parents are not particularly conscious of their fear or discomfort surrounding blindness, children can sense it.
Being a mom myself now, I notice this with my own kids. My 9-year-old has tended to approached the topic of my vision loss with hesitation and sadness, and I think it’s because that’s how I used to bring it up with her since she was very little, whereas my 5-year-old candidly asks questions about blind people and about how I am going to do certain tasks differently, in a very upbeat, matter-of-fact way, which I attribute to the only way she has ever heard me approach it. Her older sister is now following her lead.
I love bringing up stories about vibrant, successful blind people to my daughters, and I hope to keep an open dialogue with them, one that feels matter-of-fact and positive. And I hope that parents of blind children will do the same, and that by empowering and equipping the next generation in small, matter-of-fact conversations, large shifts in society’s perceptions of blindness will take place.
I posted this question in a “parents of blind children” group, and I’d also like to hear from our readers: How often do you and your child talk about blindness, and in what contexts? Do your children seem comfortable discussing their vision loss, particularly if it’s a slow degeneration? How much do you think your words influence their perspective on blindness?