5/23/12

Stop Worrying and 'She" will Learn to Love the Cane

I came across and article today that I was reminded about myself and reading through it again was reminded how much I LOVE this article. PARENTS, this is for you! Take a few minutes to read it, it's excellent!
How I Learned to Stop Worrying and
My Daughter Learned to Love the Cane

by Patricia Renfranz

My daughter Caroline, who is now twelve, is congenitally blind. She has been enrolled in a mainstream elementary school program since second grade. We spent many joyful and many frustrating hours encouraging her to explore her world as a toddler and preschooler. One day she’d be up to her armpits in a pumpkin--gleefully enjoying the gunk--and the next day she’d be crying at the top of a slide--afraid to come down but determined to do it nonetheless. A few times I crammed myself into the McDonald’s Playland tunnels to orient her or encourage her to keep moving. The worst times were those when we felt the glare of other parents as we “tortured” that poor crying blind toddler who couldn’t make up her mind to go up or down on the playground slide. We had to remember that we knew our daughter best. We knew she wanted to slide down; we just had to hang in with her until she had the courage to do it. Fortunately, my family’s resilience in these matters has paid off. Perhaps this is why I was asked by the Future Reflections editor to write about cane travel and training during the elementary school years. So, here goes.

Caroline received her first cane in preschool at the Utah Schools for the Deaf and the Blind. This cane, in fact, was a little tiny NFB cane, the significance of which I did not appreciate at the time. I don’t think Caroline saw this cane as a great emancipator, but she did receive encouragement and training. As she moved into elementary school, her various orientation and mobility instructors (OMIs) provided her with a number of different cane types (usually the red and white aluminum cane) and cane tips. She used her cane at school--in the halls, in the lunchroom, and on the playground--fairly responsibly. On the other hand, she was always encouraged to leave it at the doorway of her classroom, even though a classroom is the least predictable space in the whole school. Caroline mixed her techniques and grips to use the cane as she saw fit, while receiving instruction on its proper usage.

I do not think it is heretical or dangerous for her to have mixed and matched techniques; she was just being a kid. However, technique was a focus of her IEP goals. Technique is intimidating, and while an OMI (or a parent) may know a lot about techniques, they do not necessarily know how to translate techniques devised for blind adults into a program appropriate for children. It makes me wonder if OMI training programs have any sort of pediatric specialty. Are any of those folks who are just terrific working with children--we know who they are, even if we can't describe the type--ever recruited into OMI training programs? What about teachers with an elementary education background? Are OMIs working in the school system able to receive training in child development or child psychology? Are OMIs eligible for special endorsements for working with children? Our family certainly could have benefited from such cross-disciplinary expertise. We’ve just discovered the Modular Instruction book by Willoughby and Monthei and I was delighted to learn that Willoughby was a former elementary school teacher. I wish we had discovered the book years ago.

In any case, at home and in the community, Caroline’s use of the cane was a different story than at school. Picture us in a busy parking lot, Caroline standing outside the car door sans cane, insisting quite stridently that she will neither use her cane nor walk with an adult. In retrospect, I can see this as a young child’s yearning for independence--yearning desperately in fact--without the maturity to understand that independence requires skills and responsibility. Her desire to be independent (not to be quashed!) blossomed without the cognitive skills to understand that safe, responsible travel by a child in a very large parking lot requires either the use of the cane with supervision, or guidance from an adult. Her spirit wanted to be free (not holding hands with mom or dad) but her mind could not accept the limited choices--use your cane with someone nearby or hold our hands--that we (her parents) decided to give her in that circumstance.

This brings me to one side note, which is this question: Does every trip to the grocery store have to be a lesson in cane travel, orientation, or mobility? I feel guilty if I don’t give Caroline the opportunity to practice every chance we get, but sometimes I have to do what is best for me or for my family as a whole, not just what is best for my blind daughter. So, sometimes I leave her in the produce section to explore to her heart’s content while I go round up something for dinner. I do what I can to keep her safe, and I am guiltily relieved to not be there to see the looks of other customers or clerks as she handles all the unusual (or not so unusual) items. It is a decision that gives us both, parent and child, a little independence. She needs to know I trust her. Of course, sometimes she just stays in the car while I run in to get milk. I know, I know--Bad Mom.

Caroline and I went shoe shopping a few weeks ago. Like all the other times, I insisted she walk around the shoe department to try the shoes out. A few years ago, she was quite reluctant to do this. I could see the wheels turning in her mind: "Use a cane--stand out. Not use a cane--bump into shin-height display tables. Other kids around? I can’t see them, but I know they are staring at me." Even a little task like trying on shoes became fraught with significance. I would ask myself questions, too. Do I mention the cane? Do I just let her decide? If she doesn’t use it, do I let her bruise her shins or trip on open boxes, and learn her lesson the hard way? Why am I giving so much significance to every little thing in her life? I need therapy before we’ve even picked out what shoes to try on!

Our last shoe expedition, though, worked. We had to go to the grown-up shoe department because she’s growing so fast. There were fewer kids but more people and more obstacles, and it was in a busier part of the store. So, we get there and soon off she goes, trying her new shoes. Cane in hand, she avoids the pillars and the shin-killing shelves; she doesn’t quite avoid all the people, but that’s okay. We still get the looks--“Oh, that child is brave; oh, that parent is brave; oh, poor thing--look at her maneuvering around all the stuff on the floor.” They don’t realize it’s not about bravery. It does not take bravery to wander around a shoe department. This time, however, it did take a remarkable confluence of physical, social, and cognitive skills that we have journeyed long to find.

This year, Caroline has taken ownership of her cane, and we are so proud of her. Unfortunately, it resulted in a brouhaha with her OMI over what type of cane Caroline should use. Caroline decided she preferred the NFB-style cane, which is lighter, made of fiberglass, has a narrow round grip, and a metal tip. Her OMI insisted it was not safe. She wanted Caroline to use one of the other types of canes: the heavier aluminum cane, a folding cane, a cane with a golf grip, a cane with a plastic tip, a cane with a marshmallow tip—any cane but the NFB cane. Meetings had to be held and tempers flared. As parents, we were ecstatic that Caroline had decided to use any type of cane at all. As I told our friends, she could have chosen a telephone pole and I would have been happy. Our years of struggle, both public and private, to get her to take a cane and use it, had finally paid off! Instead of celebrating, her OMI refused to instruct her, indicating to us a lack of appreciation for what a blind child must go through to accept a cane in her life (I guess her OMI had never seen us in certain parking lots). With strong support from us, Caroline now has another OMI, one who has an open mind and who respects a blind kid’s feelings about using a cane. Things are working very well now.

I learned many things from reading Kenneth Jernigan’s article, “The Nature of Independence.” [That article is also reprinted in this issue.] One is that independence comes from knowledge and training, and from those come the power of choice. I think that OMIs, whether from within or outside the NFB, should respect the fact that there is no fixed prescription for independent mobility for any blind child. One child may need more or less time than mine to acquire the cognitive skills to understand what the cane is and how it can help him or her move independently. One child may be more or less sensitive than mine about balancing how the cane makes one different versus how it non-intuitively makes that child fit in. One family may be better able or less able than mine to find a good balancing point between the disciplined attitude that “every action has import--use the cane every day or you’ll never be independent” and a laissez-faire attitude of “hand the cane to the child and let her or him decide when to use it.”

Next year, Caroline will be going to junior high. She’ll have a big, complicated school to navigate. Thanks to a wonderful OMI, she is already learning the layout, not just routes but how to figure out for herself where she is. I am confident that she is discovering her own path to being an independent blind student who carries a cane.

Pat Renfranz is a new member on the board of the NOPBC and a leader in the Parents of Blind Children of Utah. She and her family live in Salt Lake City, Utah.

Editor’s Note: Pat raised an important question about the university training of O&M instructors. At least one program addresses the need of future instructors to have some knowledge about how children develop. The Louisiana Tech orientation and mobility degree program requires that students take a three-hour course in developmental aspects of blindness with a focus on child development. Students are taught the milestones for typically developing children, and how to use and adapt them as standards for O&M assessments and instruction. Contact information about this program is in the Resources section at the end of this issue.

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Top notch stuff, right!?! I love a good honest parent article and I love Pat!

1 comment:

Erin J said...

Excellent article! All of these are important issues. For us, the cane goes with us everywhere, so hopefully as Abi gets into the age where she is self-conscious, she'll be so used to it, she won't think of it as a choice. She'll just always use it. So far she LOVES it, both styles. We use the one with the big ball tip for "off-roading" and the NFB one for everyday use. She loves having a choice too. :)

I love the Early Explorers program that allows me as a parent to get a cane into her hands before we have to have an O&M badgering us about technique. Like handwriting, technique is important down the road, but it is made much easier by years of scribbling, coloring, writing and experimenting. Right now that is what we're doing, and it's working very, very well.