Future Reflections                                                                                     Spring/Summer 2004

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Jen’s Story

by Jan Lyon

Editor’s Note: Jan Lyons is from New Hartford. A couple of years ago she shared the inspiring story of the importance of Braille literacy to her blind, multiply-disabled daughter, Jenny, with members of the NFB at a state convention in Connecticut. The first part of the following article is an adaptation of her remarks which were published in the July 2002, issue of The Federationist in Connecticut. The second part is an update about Jen’s pending transition from high school to the next phase of life. It is a bitter-sweet time for the family as they celebrate Jen’s successes, but also grapple with the reality that life after high school—college and beyond—requires a much higher standard of blindness skills for the achievement of independence and success. Here is what Jan has to say:

In 1987 I adopted my first daughter, Jenny Kate. A twenty-six week gestation baby, Jen weighed one pound, three ounces at birth. Jen came home at thirteen months having just reached ten pounds.  She was on eleven medications, in an oxygen tent, had leg splints, was hooked up to heart monitors, and was still being tube fed. She had retinopathy of prematurity, cerebral palsy, and was a beautiful animated child. It never occurred to me to be worried about her blindness—I was worried about her survival. But after one major hospitalization and a stomach tube insertion, she gained strength and her character began to emerge.

By age three Jen spun around in space and spoke of herself in the third person. The word autism started floating around. In kindergarten, although she was more animated and vocal, she still usually referred to herself in the third person. She had excellent retention skills and could recite reams of poetry or commercials from television, and she loved to sing her favorite songs.

In kindergarten, Jen was introduced to the alphabet (which wasn’t really new to her because we had often sung the alphabet song to her), phonetics, and large tactile letters. In first grade, her teacher introduced Braille but cautioned us that Jen would probably be unable to learn it due to her cerebral palsy. However, the teacher believed that we should nevertheless try to teach it. Within six months Jen had learned un-contracted Braille (or Grade 1 Braille, as it was then called). Suddenly her world opened up like the petals of a rose. She could hold the words just spoken in her hand. She walked around with these words like a child holds a toy. She read and re-read them. She stopped talking in the third person. These were “Mommy’s words” or they were “My words” and they had meaning.

Spoken words are like snowflakes that fall on your face and melt. They are beautiful, but they do not last. Now they lasted. Braille gave words shape and form and meaning. Words now had permanence for Jenny and they could tell what just happened, what was happening now, or what was about to happen.

Jenny is now a high school freshman, an honor student in her fifth year of Spanish, a published poet, a singer, pianist and songwriter. She is dedicated to world peace, and she reads everything she can get her hands on. She reads and comprehends an astounding 275 words per minute. I am an educator, but I did not educate Jenny—Braille literacy did. The sheer excitement of holding the spoken word in her hands is what motivated my child to learn.

I have a personal theory about why and how Braille—beyond its benefit as a tool of literacy—has been so valuable to my daughter. In graduate school, I took a course in neurology and learned a little about the brain. One of the things I learned about was synapses; you know, the spaces between brain cells where electrical energy jumps to make a connection to another. This is how each thought or piece of information is transmitted. I know that the portion of the brain where sight is processed atrophies over time if not stimulated, and that other pathways need to go through these brain centers to make connections of information. I strongly believe we need to keep as many brain cells open as possible to learn and keep a steady stream of energy flowing. I also strongly believe that tactile/kinesthetic learning—such as Braille—does this. We use much auditory information daily just awakening and going about our daily routines, so this portion of the brain normally gets its share of input. It seems to me that the tactile system, when fine-tuned with Braille instruction, must somehow help to expand and open different pathways of synaptic connections.

So, how important is Braille literacy? I have seen my child grow beyond the darkness of her world to explore and expand her knowledge through reading Braille. That’s my answer.

March 26, 2004:

A couple of years have passed since I was asked to speak at the Connecticut Convention of the NFB in support of Braille literacy. Jenny is now a senior at Northwest Regional 7 High School and about to graduate with honors.  In 2003, she was one of the nine recipients to receive the Discover Card scholarship co-sponsored by the American Association of School Administrators, being offered a coveted $27,500 for college.  But Jen’s story has no end yet, only a beginning and a bit of the middle.  We now face a set of new challenges, a new voyage faced by many other parents and blind young adults. 

Is Jen ready for college? Jenny has had minimal mobility training and even less exposure to the “real world,” having been sheltered in the same school system for six years, with a sighted guide and a tutor. Yes, I understand all colleges have coordinators for access, but is there a school accessible to the blind and also able to accommodate Jen’s other special needs?  Jen is totally blind, has cerebral palsy, a math disability, and epilepsy with grand mal seizures —a relatively new label that we are still getting used to and learning how to manage. I confess that I lie awake at night thinking about the dangers and worrying that Jen may not yet have the skills she needs to navigate, for example, a college campus that is on a busy main road. Should Jen defer the scholarship and attend a rehabilitation training program for the blind before going on to college? If so, which program should she attend?

So our new journey is complex, perhaps more so than the earlier “road less traveled,” or perhaps it just looks less “paved” as we are older, and perhaps no wiser. A new set of challenges lie ahead, a new way to see the world.  Things seem so uncertain at this junction, but there is one thing we will count on:  Where there is a will, there is a way.  Jenny has taught me that and I will follow her lead.  She wants to graduate from college, she wants to become a court recorder or a bi-lingual social worker.  She has dreams and aspirations like every high school graduate should.  The only difference is, Jenny will be creating new pathways to reach her dreams, and God-willing, I will be there to watch her joy, at each cross-road, each new turn. Life is full, not always of what we have planned, but always of what was planned for us. We dream big, but what we have received is even bigger than imaged. A tiny miracle of a child is about to bloom in new soil.  I can smell the flowers from here.

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