Future Reflections Fall 2009
by Richard A. Holloway
From the Editor: When parents first learn that their child is blind, they often pass through a time of panic, despair, and self-doubt. Richard Holloway, first vice president of the Georgia Organization of Parents of Blind Children, recounts how he moved through and beyond this phase to discover a world of possibilities for his daughter.
I have three children. Many people would say that two of them are typical and one is blind. I prefer to say that I have three typical children, one of whom happens to be blind.
Some people can't decide whether to say their child is "blind" or "vision impaired." One reason so many of us struggle over a term for our child's condition is that a stigma is attached to the word "blind." For me, the word "blind" simply describes my child's lack of vision.
My daughter, Kendra, was born on September 11, a year to the day after the September 11 we all remember too well. I could never have predicted the strange mixture of emotions I experienced at my child's birth. Kendra is my second child. My older daughter was born from a previous marriage, so this birth was my wife's first. We had such joy and expectation leading up to her arrival! We had no indication at all of any medical concerns. When a problem was discovered at birth, we were caught totally off guard.
Generally I say that Kendra has been totally blind since birth. For most intents and purposes that is true, but for the purpose of this story it really is not the case. Kendra's birth was pretty typical except that she came very quickly. When she arrived I noticed that the doctor looked concerned. Kendra did not want to open her eyes, and one of them was swollen. The staff whisked my daughter to the corner of our room and then off to a special nursery. It was all very distressing for us! My wife never even had a chance to hold her firstborn child at the time of her birth.
Over the next few hours we learned that Kendra's eye was not actually swollen. The "non-swollen" eye was the immediate concern. The first eye appeared to be normal, but the other was basically missing. Later we learned there actually was a very small, chaotic eye there, but it has never provided Kendra with any vision.
We were stunned to hear that our child would have vision on only one side. It seemed that nothing could be worse. We had no idea what we were in for as our journey progressed.
We soon found out that Kendra's "good eye" had cataracts. Fortunately, the doctors told us, her field of vision was not obscured. That may have been true in the beginning, but by her two-month well baby checkup, she had no red-reflex in her "good" eye. We already had an appointment scheduled with a specialist; now we moved up that appointment. Our sense of urgency is almost indescribable. We simply had to fix this problem at all costs!
The specialist explained that Kendra needed a lensectomy to remove the cataracts. She would be fitted with strong glasses to create a fixed field of vision in her "good" eye, since she was too small to have an artificial lens implanted.
By now the language to describe our daughter's situation had begun to change. Instead of being told that she had "a greatly reduced field of vision," we started to hear the undeniable term "low vision" being used. My wife was now in intense information-gathering mode. I did a lot of reading and research too, but my efforts paled in comparison to Stephanie's.
We were told that the lensectomy would take an hour and a half. We had barely settled in the hospital waiting room when one of the surgeons came out to see us. There was another problem. Some connections between the lens and the retina, which should have dissolved before birth, were still intact. We needed a different surgeon--a pediatric retinal specialist.
We rescheduled the surgery, and this time it was completed. Soon afterward Kendra was fitted with glasses. The crisis seemed to be over, and we tried to feel like ordinary parents. However, within a few weeks we noticed a change of color in our daughter's eye. Bleeding inside the eye clouded her vision, and her ocular pressure rose. We went to one medical appointment after another, searching for answers, clinging to hope.
Finally we received good news. The pressure in Kendra's eye had dropped to normal. We smiled and joked in relief. At last we could go home and relax!
I felt so much better, and it was wonderful to see Stephanie smile and relax. Nevertheless I had a twinge of uneasiness. The doctor told us Kendra still needed an ultrasound, just to make sure her eye was all right.
As usual, I sat and held Kendra during the ultrasound procedure. I could see the monitor as the technicians looked inside her eye. Something seemed wrong. I have no ultrasound training, but I clearly saw something floating around on the screen. I was deeply worried, but I kept my fears to myself. I didn't want to upset Stephanie for no good reason.
A few minutes later we found out why the pressure in Kendra's eye was normal. When the retina detaches, pressure in the eye can go down very quickly. Kendra's only retina had fully detached. Unless it could be reattached our daughter had no possibility of vision.
Once again surgery was scheduled. The operation attempted to mend tears in the retina so it could heal itself, but progress was disappointing. When the doctors undertook yet another surgery, they discovered that Kendra's retina had shriveled into a tiny mass. The doctor told us that reattaching the retina would have been like trying to line a basketball with a liner the size of a tennis ball. Whatever the metaphor, at the age of six months Kendra was totally blind.
Did Kendra ever have sight? Technically the answer is yes. Stephanie even recalls one time when Kendra saw her mommy and responded. It happened only once. I'm glad it happened, and I hope that somewhere in Kendra's mind that memory of vision survives.
When my first wife and I divorced I discovered that in many ways ending a marriage was like experiencing a death. I had the same sense of catastrophic loss when my daughter became blind. Yet, with all the pain over Kendra's lost sight, ultimately there came a sense of comfort. We had done everything in our power to save Kendra's vision. Despite all our efforts the worst had happened. The waiting and hoping were over, and it was time to move on.
Fortunately, aside from her vision issues, Kendra has always been very healthy. Apart from some early ear infections and the usual bumps and bruises, she is just fine. Some people may be startled by those words. Kendra is blind--how can she be "just fine?" She won't be able to do anything, and she will never be "normal." I suppose such thoughts ran through my own mind at one time, but looking back now they seem absurd. The biggest challenges my daughter faces come from the people around her. People assume that she needs help with everything, but she doesn't. The ones who need help are people like me. As a parent I have had to learn new ways to communicate. I have to find nonvisual methods to convey information. I can't just point at an object or tell Kendra to watch how I do something. I have to describe and demonstrate things physically. For most of us, nonvisual thinking is brand-new.
I felt real panic when all this started. I was overwhelmed by the sense that I had to adapt the entire world for Kendra. I knew I'd manage somehow, but it was going to be a major undertaking. Over time, though, I have come to realize that Kendra is not the first blind child in the world. We have found ready-made solutions to most of the problems we have encountered so far. Some of these solutions are rather obvious. For instance, if your child doesn't have enough vision to ride a bike safely down the road, get a tandem bicycle. Other solutions take thought and research. For us, Kendra's crib became a focal point of concern. Our worries sent us off in search of answers.
By the time Kendra was strong enough to crawl out of her crib, we realized it was a long way from the top rail to the floor. At the time we believed that it was a bit more dangerous for her to be climbing out than it would have been for a sighted child. Looking back, we realize we were wrong about that, but at the time we didn't have that perspective. One night we found Kendra hanging over both sides of the crib at the corner, fast asleep! We had to figure out a way to keep her from going over the side head first. For a while a contraption called a crib tent helped us keep her in the crib more securely. We had no idea how we were going to keep her safely in a "big girl bed" at all. How could we prevent her from falling out? None of the side rails we found seemed likely to help.
It turns out there was a trundle bed under the day bed that was already in Kendra's room. When we pulled out the lower bed most of the way, we ended up with a "stair-step" arrangement. If Kendra rolled out of the upper bed, she would fall onto the lower bed. If she rolled out of the lower bed, she would fall only a foot to the floor--not a major hazard. Probably the bed wasn't a huge hazard in the first place. At this point Kendra is no more likely to fall out of her bed than any other kid.
I have discovered that there are many, many nonvisual ways for Kendra to learn about the world. Some things or places have a particular smell she can identify. Some things are warmer or cooler than others. Sometimes she can locate an object because it is near a particular sound source. We all use nonvisual clues every day, but we don't usually pay conscious attention to them.
Before Kendra knew how to read we put Braille labels on lots of things around the house, exposing her to Braille in the same way a sighted child sees print all around her. We read to her from print/Braille books so she could feel the Braille just as a young sighted child looks at print letters and words. Now Kendra reads very well on her own. Using her Brailler she writes as well as or better than most of her sighted peers write in print. She is learning to use a refreshable Braille display and a computer with a screen-reading program called JAWS. Using her computer she can emboss her work in Braille.
As time goes by we find more and more options for our child. She enjoys listening to books on tape. Movies and TV shows generally have enough dialogueand sound effects for her to take them in by listening. We have also discovered TV programs and movies on DVD that have audio descriptions. Many ATM's have headphone jacks. A blind person can plug in headphones and use the ATM with audio feedback. A blind person now can use a Braille notetaker such as a PAC Mate along with a portable bar code scanner to read the labels on the items on store shelves. A cell phone can be equipped with a camera that works as a portable scanner to turn text to speech. A talking GPS system can be useful in way-finding, just as a GPS with a screen is helpful to sighted travelers. The list goes on and on. By the time Kendra is old enough to drive there may even be a car that she can drive herself. We're not counting on it, but we're hopeful.
I have gotten to know a good many blind adults, and they have taught me a lot. They have shown me that with proper education and training a blind person can do almost anything. One blind fellow I know made a point of cleaning off his own roof a few times before he would hire someone else to do it. He wanted to make sure he knew how to do it himself.
Kendra is a busy young lady. Honestly, she wears me out, but I think it is fantastic! She has quite a musical gift, and it is a joy to watch it develop. She plays piano, guitar, drums, and even the harp. She makes up stories and writes them out in Braille. She reads to her little brother. She likes to sing and make recordings. She likes to swim, and I think she is a better swimmer than most kids her age. I know she's a better swimmer than I am! She takes ballet and tap classes, and she has taken gymnastics. She's also a Brownie; she was a Daisy Scout last year. It's safe to say that Kendra is as active as most sighted children, or perhaps even more so.
When I look toward the future, I know that some day Kendra will get around town on foot or by bus, rapid transit, or cab. She will be able to travel unassisted on trains, boats, or planes. I've learned that blind people grow up and go off on their own, just like everyone else does. They have careers, get married, and raise families--all of the things that we want for all of our children. But that's a little beyond the scope of Kendra's story. After all, she's not quite seven years old yet. Some day all of those possibilities will be part of her story too. My wife and I will try to make certain that she gets the foundation she needs during the first part of her life. Kendra will take care of the rest of the story on her own.