Our Role in Defining Our Kids

I was recently at the American Printing House for the Blind Annual Meeting and had a discussion with educators about the role of parents in helping others understand our kids. I was sharing my opinion (as usual) about how parents have to take the lead on this to make others understand our children outside of their labels.

For vision, ophthalmologists and optometrists provide the technical report. They diagnosis our kids, tell us what (if any) glasses they need, and while using very big words, explain why our children are blind or visually impaired. Then, the teacher of students with visual impairments completes a Functional Vision Assessment and Learning Media Assessment to describe what that means in the real world.

Yes, a child may have a visual acuity of 20/200, but what does that mean. What can they actually see on the board? How big does their print need to be? How does this impact their ability to make friends and access games at recess? The teacher of students with visual impairments helps our kids’ educational team understand their vision loss beyond labels like Optic Nerve Hypoplasia or Achromatopsia for example.

So, I think that’s our role as parents. We attend IEP and Evaluation meetings, and educators tell us what our kids are and aren’t doing in school, what services they qualify for, and why they may need to be pulled away from their peers. They may say "developmentally delayed." That’s a very broad term and different for every one of our amazing kids. It’s my job to define what "developmentally delayed" really means for Eddie.

Eddie sweeping the living room floor

Our job is to do the "functional" for every aspect of our kids. To say what our kids love to do when they have free time, what chores do they do at home, and how much assistance do they need. How do we know when they are having fun, when they’re nervous, or when they need a big hug? This is our role… to make sure their team understands them and not just their labels.

Most importantly, we must share what we expect of our kids. We have faith in their abilities, hope for their future, and love for them 100 percent of the time. Nobody else feels as strongly about our kids as we do. We must provide the specifics that make them more than their file.

This isn’t always easy. I don’t find myself going to the good things every time somebody asks about Eddie. I first think about what’s hard and what I’m worried about. As of today, I vow to do better. I’ll try not to take the "How’s Eddie" question as an opportunity to share what’s concerning. Instead, I’ll take it as an opportunity to share a little more about him and his personality.

Hmmm, let me practice. If somebody asks, "Hey, Emily! How’s Eddie?" My reply today would be, "He’s doing great! He’s really taking to the keyboard and has suddenly become obsessed with sweeping the living room. He made us laugh today because he wanted me to quit working and took my chair away. He’s such a character!"

Ok, now your turn. How is your child who is blind or visually impaired?