Parenting with Vision Loss: What’s it Like for the Kids?

April 15, 2017 | 9 Comments

by Kathy Austin, CVA

Tags: parenting with vision loss;

 
Lots of us with vision loss are raising families. We may worry about how our kids are internalizing the fact that their family is different from their friends.  We wonder if they are picking up on the stares and comments from others about the quality of our parenting skills.  How does having a parent with vision loss affect the kids growing up? What is the impact on their adult lives?

I raised two children while losing my vision to retinitis pigmentosa.  My goal was to make sure they never got left out of activities or felt uncomfortable about having a mom who was different from their friends’ moms.  Now that both of them are all grown up, I wondered how it really was for them. So I asked my daughter, Missy, now married and living her own life, what it was like for her.  Here’s what she had to say:

Mom: What was the hardest thing about growing up with a mom who didn’t see too well?

Missy: Growing up with a mom with vision loss was normal to me.  I didn’t know any different. When I was asked to answer this question, it took me a while to think what was hard.  Probably the hardest was not being able to be driven around.  You would always find a way for me to get anywhere whether it was asking a friend’s parent or riding our bikes with me to the destination.

Mom: Were you embarrassed about having a mom with vision loss?

Missy: When people stare at you and your blind mother, it can be tough, especially when you are young.  As I matured and became aware, I grew to be very over protective.  I would stare back at people when they were looking at us or make a comment to those who didn’t understand.  It was not embarrassment, but more frustration that some people were so naïve. 

Mom: What did your friends ask you about me?

Missy: Often times, friends were nervous to ask me questions about you.  Generally, I would educate them about your disease and how it happened.  I would tell them not to be different with you.  Every time I brought a new friend home, I would tell them they wouldn’t even be able to tell.  I told them you were as normal as can be — looked the same, cooked and cleaned just like other moms.  After the first encounter, I’d always ask the new friend what they thought.  They all agreed they never felt uncomfortable or that they could even tell a difference.

Mom: Did you miss out on anything?

Missy: Never, at least not to my recollection.

Mom: What did you get away with having a mom with vision loss?

Missy: When I was a teenager, I could get away with wearing way too much makeup and dressing however I wanted.  Recently, I found out you would ask Dad what I looked like on a particular night.  Dad didn’t think my style was always appropriate, but he didn’t feel comfortable addressing it with me. Since you couldn’t see it, I got away with it.

Mom: What didn’t you get away with?

Missy: I never got away with whispering something snide. You could always hear what I said.

Mom: What stirred up the most emotions for you?

Missy: Not being able to “see” me on my wedding day. A few months before I walked down the aisle, someone made a comment to me that it was so sad that you would not be able to see me in my wedding dress.  It hurt me that someone could be so cruel to say that to me.  I thought that no matter what I looked like on that day, you could imagine me as a princess and you probably had the prettiest picture of all in your head.

Mom: How has having a mom with vision loss affected your life now that you’re all grown up?    

Missy: I have to give credit to you for my organizational skills.  Growing up we had to make sure everything was in its spot to avoid accidents.  Forget about drinking half a pop and putting it back in the fridge!  Because of this, I am not a collector and don’t have clutter around.  I have brought those habits in to my adult life.

I also feel I am more compassionate to those with a disability.  I can help those I see on the street struggling and am better able to help them.

Mom: Anything else you’d like to add?

Missy: You have been an inspiration to me.  You went back to school, graduated with honors and work downtown every day.  You didn’t let anything hold you back.  I grew up hearing the phrase, “Your mom is amazing” on an almost daily basis. This in turn, made me feel special.

Missy Austin Jilek is a business development manager for a Chicago law firm.  She lives with her husband Karl and their golden retriever, Gilligan.

 

 

Kathy is the Community Engagement Specialist at Second Sense