Hindsight is 20/20: 5 Tips for Parenting Children Who are Blind or Visually Impaired

Note from Joy and Jenelle: The following post was written by our mom, Judy, in response to Joy’s last post, “Getting Lost: What My Mama Taught Me”. Unbeknownst to us, our adventurous mom “faked it till she made it” and has some insightful reflections to share as a result. ‘Judy, of course, has double experience parenting children with vision loss, and now that we twins are all grown up with children of our own, she has plenty of hindsight. Judy is also an expert in Early Childhood Education with over 30 years of experience as both a preschool teacher and director.

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(Visual description of photo: Judy and friends hiking in the mountains)

It’s interesting that I have the reputation of being adventurous and a risk taker because… it’s all a scam.

I’ve never been comfortable with the unknown. I’m a firstborn female of nine children; I Had to be the ‘guide on the side’ with my mother. I had to have a travel plan. I had to ‘be the map.’ I had to know exactly where I was going at all times, to lead others. Or so I thought.

And if I didn’t, I chose not to move forward. I am Absolutely terrified of being lost, literally or emotionally. The fear has stifled my creativity and wanderlust many times in life. 

Last week I had a truly enjoyable adventure hike at Ancient Lakes, an area richly formed by glacial and volcanic movement, in Washington. My joyful friend as driver had GPS, and my educator friend, the navigator, grew up in the mountains here, and knows every peak and valley. All I had to bring were snacks and a great attitude. I was a happy hiker, relaxed and confident. Because I trusted them. Yes, There was some risk; we almost stepped on a rattlesnake, and ventured close to a cliff overlooking a water fall, but I always felt safe because they were leading me. As I hiked, I reflected on Joy’s post and all of the unchartered territory my husband and I have navigated over the years of parenting.

I do recall feeling lost at times, and so I thought it might be helpful for those parenting children with vision loss to read some tips I learned along the way.

In true firstborn style, I googled “Tips for when you are lost.” To stick with the metaphor of being on an adventure.

Navigate using satellite dishes

In the 80’s we didn’t have the worldwide web to Google anything for information. We didn’t have satellite dishes for “GPS” health. Intuition was our first ‘satellite dish.’ At age one, we Wondered why Joy and Jenelle were so agile going up down and down stairs and yet bumped into things going around corners and in un-predictable areas. At age two we wondered how they could so quickly and expertly learn how to ride a bike and yet, not see barriers. Soon enough, the pediatrician, eye doctors, then finally the expert Dr. Gerald Fishman at the University of Chicago were our ‘satellite dishes.’ Then the school district, With their unending list of experts; the vision itinerant, the Special Ed Director, the Social Worker, the Psychologist, the teachers, the principals were our ‘satellite dishes.’ I listened to everything they told me to do. I became a ‘dutiful tourist’, Following all guidance at IEP(individual education plans) that guided their education. Sigh. So. Much. Paperwork. I needed a new file cabinet. Remember, however, that you and your child are experts on your family’s needs and that you also have your own satellite intuition as a parent that no expert can replace.

Follow the STOP rule: Stop, Think, Observe, Plan

“Stop”: Wandering aimlessly will only make matters worse. Stop and stay where you are. There were many times as parents of VIPs that we had to be “OK with the ‘unknowing’ and sit with the fear of having no direction, no guidance. With the first knowledge that it’s a degenerative eye disease and our energetic frolicking girls would slowly lose vision, we were devastated for them. We grieved within. We hid it so that we would not ‘lose our way’ in parenting. We didn’t talk with them about it. Or the reverse, Tense awkward conversations as they matured.

“Think”: Try your best to not panic. Think things through before you waste your energy trying to do anything.” As any parent knows, that is nearly impossible. We want answers and we want them now! We don’t want our children to ever stumble. We don’t want them injured on the journey. Yet, I encourage you take the time to reassess regularly.

“Observe”: Look at what’s around you to see if there’s anything near that can help you.” We observed what was difficult for Joy and Jenelle, And also what they enjoyed. We observed when they needed extra help and when they pushed us away. It was a daily nuance, an hourly rassessment, as they grew older, more verbal, and developmental shifts happened. What teenager wants a mom around for any help? We miscalculated or totally misread interactions, ‘blew a tire’ more times than I can count., over compensating and mis-communicating, anticipating instead of actually asking what they needed.

“Plan”: Figure out how to find what you need.” There were times we honestly did not know what we needed.’ I read every article and scrap of paper the doctor or school district would give me, which wasn’t much.

Find a landmark

I see this as a metaphor of ‘finding a mentor.’ Sadly, we never did find mentors. We had no parenting group. We had no parents in the district that we connected with. We were solo adventurers. All the help I got was very clinical and educational. It would’ve been wonderful to have mentors on the journey. We could have created a group. Hindsight is 20/20 on a journey. I would add, though, that my extended family have been truly helpful as ‘guides on the side,’ giving helpful directions, Without hindering or overprotecting my daughters.

Ask for help

 It seems like a given, yet So many of us are so full of pride and grit (and we’ve been conditioned to ‘not bother people’, that we forget to ask for help when we are lost.) Most People are more than willing to help along the way. I didn’t ask for help a lot and I regret that.

Take Fun Pit Stops

There were so many times I was too serious, dragging them to smelly clinics and squeaky floor hospital appointments. Spontaneous lunch dates, ice cream, or a run in the park helped our moods and connection.

Last weekend my grandkids and I saw the play “The Wizard of Oz.” Glinda’s compassionate comment to Dorothy, as she realizes that she can finally get back to Kansas, resonated deeply with me:

“You always had the power, my dear, you just had to learn it for yourself.”

My daughters have the power within. I don’t have to be a perfect guide. I just have to be by their side. Because, after all, whether you’re flying over Kansas or hiking in the mountains… “Adventure is a state of mind-and spirit.” – Jacqueline Cochran, American pilot who broke the sound barrier.