Future Reflections Cane Travel and Independence
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by Stepanie Kieszak-Holloway
--From an entry in the journal I keep for my daughter, dated February 2, 2007:
Today Kendra and I read a book called The Little Sailor. It’s about a submarine and it has buttons to push for sound effects. One of the sounds is sonar. She and I started talking about how her cane is like sonar because it tells her what’s in front of her the same way the sonar tells the submarine captain. Then she started saying, “Tap, tap, tap, tap.” I asked her, “What’s that sound?” and she said, “It’s Kendra’s sonar.”
Before my daughter Kendra was born, I would never have described myself as being particularly assertive. However, having a blind child forced me to learn to speak up for the things I knew she needed and deserved. Sometimes that meant going against the status quo. Sometimes that meant I had a bunch of experts angry with me for challenging them. And sometimes that meant that I had to push forward on my own to obtain the things I knew Kendra needed. Thus began the history of our personal “cane wars.” I think my husband Richard and I both felt like we were, at times, fighting a losing battle. We knew we wanted Kendra to have a cane as soon as possible. Why was it so difficult to convince others that we were making the right decision? Perhaps our experiences will smooth the way for other parents.
Kendra started walking when she was fifteen months old. At the same time, my husband and I began talking about getting her a cane. We did not receive any support from the agency we were working with so I contacted the National Federation of the Blind’s (NFB) parents division, the National Organization of Parents of Blind Children (NOPBC), to ask for advice; and I was given Joe Cutter’s phone number. Joe is a nationally recognized specialist in pediatric orientation and mobility (O&M). Our first phone conversation lasted over two hours. It was such a relief to talk to him and to receive confirmation that we were not insane for wanting Kendra to have a cane at such a young age. It’s very easy to start to doubt yourself when all the “experts” are telling you that you’re wrong. Joe was the sounding board I needed. He also suggested several books and articles for me to read so I’d be better prepared to handle comments like, “Your daughter will learn bad habits with the cane if you give it to her so early,” or “Get her a pre-cane device if you think she needs to have something.” Joe made one particular observation that has stayed with me through the years. He talked about how the universe for a blind baby is limited to what is within arm’s reach. If you give that child a cane or even a long wooden spoon to reach out with, then suddenly that child’s universe has expanded. How could this possibly be considered a bad thing?
Over the years, we have met others through the NFB who have convinced us that we made the right decision. Richard and I met Fred Schroeder at an NFB of Georgia state convention one year and talked to him about cane use for young children. Fred is currently the first vice president of the NFB. I have read several pieces about and by Fred and was struck by his statement in a 1989 Future Reflections article about how keeping a cane away from a young blind child was like keeping crayons away from a young sighted child:
The traditional thinking in the field is that giving a cane to a very young child will result in the child’s developing bad habits which will need to be remediated later on. We have found this concern to be wholly vacuous and perplexing by its lack of understanding of child development. It would certainly be an exceptional two-year-old who would hold a crayon in the same manner as an adult holds a pencil. Nevertheless, it is recognized that a young child’s early scribbling is providing good practice in the development of the fine-motor skills which will eventually enable him or her to hold a pencil properly later on. To deny a child of early writing experiences so as to avoid the development of bad habits would be considered ludicrous and would be recognized as retarding the development of eye-hand coordination and other important skills. (Fredric Schroeder, “A Step Toward Equality: Cane Travel Training for the Young Blind Child,” Future Reflections Vol. 8, No. 1.)
Kendra is currently five years old. She is on her fifth long white cane. With the exception of one cane that needed to be replaced after someone stepped on it, each of her canes has been longer than the previous one. At eighteen months of age, Kendra received her very first cane through the NOPBC. It was twenty-four inches long. Of course she didn’t use it correctly at that age; we never had the expectation that she would. What we did expect of her was that she would understand it was hers and that it was to go with her whenever she went out. We also wanted her to understand that it would “tell” her things. To this day, if I see her ignoring cues from her cane and heading towards something that she could avoid, I’ll ask her to think about what her cane is telling her. We would never consider leaving the house without Kendra’s cane. It’s so much a part of our routine that I have caught myself thinking on more than one occasion that we need to bring R.J.’s cane with us when we go out as well. (R.J. is Kendra’s fully sighted two-year-old brother.)
At the age of two, Kendra attended school one day a week at The Center for the Visually Impaired (CVI) in Atlanta. We sent her to school with her cane although we knew that it was not part of their philosophy for children that young to have one. I recall the family counselor individually taking aside the other parents on the first day of class to tell them that Kendra’s use of the cane was the parents’ personal decision, and it was not on their recommendation. Three years later, I heard from a parent with a child in the CVI program that the current O&M instructor works with her three-year-old son with a cane, and that the overall atmosphere is one of greater tolerance.
When she was three, we enrolled Kendra in a Montessori school. She had O&M lessons twice a week for forty-five minutes each session. Kendra’s instructor, Libby Hall, was trained in the traditional O&M approach but she was open to reviewing some articles I gave her by Joe Cutter. Last summer, Libby attended her first NFB convention in Atlanta. I recall seeing Libby at the convention one day and she held out her arm to show me the goosebumps. She seemed energized by the O&M information presented at the convention. She left with every piece of NFB literature available, and with a new NFB-style long white cane. Libby recently told me that she could go on and on about her reactions to and feelings about the convention, and about how she has been stimulated and challenged by NFB ideas and techniques. Libby continues to be Kendra’s O&M instructor at her current public school and we have been very pleased to see some of the new approaches she has tried with Kendra this year.
In case you think that this early experience with a cane means that Kendra’s acceptance of it has been smooth and trouble-free, let me set the record straight. Kendra went through a period when she stubbornly refused to use her cane. I wrote to Joe Cutter for advice and racked my brain trying to figure out how to make the cane more acceptable to her. The event that turned things around was attending an NFB convention and hearing the tapping of canes all around her. No longer was she the only one with a cane! Even though Richard and I have teaching canes (adult-size canes that we use to model cane use for Kendra), it wasn’t the same as Kendra hearing other blind people using their canes all the time.
Reactions to Kendra’s cane by people outside our family have varied widely. On the one hand, Kendra has sighted friends who devise makeshift canes for their blind dolls. On the other hand are people who continue to call her cane a stick, even after being corrected. We’ve certainly had our share of stares and whispers. Sometimes I try to turn things around and consider the situation an opportunity to educate people. For example, if I hear another child whispering “Is she blind?” to a parent, I usually stop and tell the child that yes, Kendra is blind and she uses her cane to help her know what’s in front of her when she’s traveling. I need to remind myself that most people have never seen someone Kendra’s age using a cane. Last Halloween, Kendra wanted to dress up as a doctor so I bought her a set of scrubs. While we were trick-or-treating, an adult told us what a funny costume Kendra had; she thought Kendra was supposed to be a blind surgeon. I told her that Kendra is blind but that she was dressed up as a “regular” doctor, not a surgeon. It’s important to us that Kendra doesn’t become ashamed to use her cane, and hearing us address public comments about blindness and the cane in a positive manner is one way to make sure that doesn’t happen.
In 2007, the Georgia Organization of Parents of Blind Children started a cane bank in memory of Jared Cochran, a little boy who died unexpectedly at age three. We provide a child’s first cane for free to any parent in Georgia who requests one.
Tap, tap, tap, tap, tap……..
Stephanie Kieszak-Holloway is president of the POBC of Georgia and a member
of the board of the NOPBC. She and her family live near Atlanta.
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