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 #1 Find Comrades for Your Child
Spending countless hours researching adaptations and technology for your children is time well spent, but if you’re taking the time to do those things, then also take a few minutes to connect your child with peers they can relate to regarding their vision.
I remember the first time I sat in a room full of blind peers in college, at an NFB conference. We stayed up till wee hours of the night, exchanging “blind” stories, laughing until our sides were sore with the delightful ache of comic relief. I loved how willing people were to laugh at themselves. Like one young married couple, both blind, who told about how their parents complimented tham on their flying bat Halloween decorations….that they hadn’t realized were still up in April.
I shared stories I had never told anyone, not even Jenelle, and while I didn’t realize it then, my sense of shame over my disease shrunk dramatically that night. I remember one girl with RP who was also studying sociology, and loved yoga like me, sharing a story about how, as a 12-year-old, she had wanted to impress her new stepmom by showing her she didn’t need any help exiting a ferris wheel. Only her diminishing vision prevented her from realizing that the ferris wheel had stopped to let off the carts at the bottom first, and her cart was still about 50 feet from the ground. She began to step out of the cart, nearly giving her stepmom a heart attack. I cringed, remembering ways I, too, had put myself in danger trying to assert my independence.
Growing up with a disability, children naturally feel different from their peers, which can be lonely and isolating at times. I remember longing to meet other kids my same age with low vision. What I would have given to attend a camp geared specifcially for kids with low vision, where I could have competed athletically against kids who also had trouble seeing flying balls, or attended evening campfires with other kids who needed extra help in the dark.
I remember my parents meeting a couple who had a son with low vision when I was a teenager. They invited them over, and it was nice, but the kid wasn’t really the talking type, and I wanted more— I wanted a room full of girls to gab with for days on end. Yes, I had my twin sister, but we both felt a sense of shame, and being together in silent shame can sometimes feel even more lonely than being alone in it.
In the Information Age, it is now much easier for parents to research options for their children than it was for my parents when I was growing up. With just the click of a button, you can find a plethora of information about your child’s eye condition. And your child, as they get older, can do the same. But any amount of information can’t replace the reassurance that can be gained from connecting with peers who are facing similar challenges.
This doesn’t have to be your child’s main group of friends, but just peers that they see every once in awhile that they can kick back with.
Here are some links that might help you in your search: