Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Kathy Gabry
From the Editor: Kathy Gabry is a founding member of Parents of Blind Children New Jersey (POBCNJ), and has served on its board for at least seventeen years. With
Carol Castellano she is coeditor of the POBC-NJ newsletter, In Touch. She also edits The Sounding Board, the newsletter of the NFB of New Jersey.
The journey is one I'd never anticipated, yet it's taken me to people I admire and to a life I've never regretted. When my son was born deafblind twenty-one years ago, I had never before met a blind person. I knew people with Down syndrome, multiple sclerosis, paraplegia, quadriplegia, and deafness. I knew that they experienced life differently than I did, and I knew that, given the opportunity for an equal playing field, they lived full lives. Yet, how would I level the playing field for my deafblind child?
Two principles guided my approach to solving that problem. First, thanks to exposure to some of the most creative, exciting, and out-of-the-box thinkers in the field of disability, I realized that I had to believe in my own parenting abilities. Secondly, and wholly through experience, I learned that deafblindness is a unique disability. It's not simply deafness plus blindness; it requires a different skill set to make sense of the world. In fact, some deafblind people and some hearing, sighted professionals in the field have begun to use the term deafblind, without a hyphen. This term indicates that deafblindness is, indeed, a distinct disability.
The first time I held my son Jon I was taken by his big, beautiful, blue eyes. Granted, everything about Jon was big. Born by Cesarean section, he weighed nine pounds, nine ounces and measured twenty-two inches in length. My mother claimed he was the size of a three-month-old at birth. As I held him, I was impressed by the way he seemed to be looking at everything outside the window of my hospital room. I told my husband to bring us lots of toys because this kid was curious!
Jon turned out to be a difficult baby. He wanted to be held almost constantly, and he cried whenever I put him down. By the time he was a few weeks old, I realized that, although his eyes moved back and forth, he didn't focus visually. When he was three months old we learned that there was a name for his "active" eyes. The condition was called pendular searching nystagmus. Jon had no pupillary reflex. He was totally blind. The diagnosis was Leber's congenital amaurosis (LCA), a genetic disorder that affects the retina.
We enrolled Jon in an early-intervention program with infants who had a variety of disabilities. At each weekly meeting, the teachers impressed upon us moms how important we were to the success of our babies. They emphasized that it was our responsibility to work with our children each day at home. I accepted this role willingly and seriously. I set aside time every day to work with Jon on PT, OT, and language goals. Jon also exhibited what the professionals called "autistic-like" behaviors. He flapped his arms, resisted change, laughed at inappropriate times, didn't respond to verbal cues, and preferred to play alone or only with me.
When Jon was fifteen months old we switched him to a brand new early intervention program specifically for babies who were blind or visually impaired. The teachers were bright, enthusiastic, and energetic. They, too, encouraged parents to participate as their children's first teachers. We were several months into this program when the speech therapist expressed concerns about Jon's hearing. Just before his second birthday, we learned that Jon was profoundly deaf.
The diagnosis was not a total surprise since there were people on both sides of our family who had hearing loss, including my husband. Now, suddenly, everything made sense to us. No wonder Jon had been such a clingy, difficult infant! Because he couldn't see or hear, I was his only connection with the world. I tried to imagine how frightened he must have been during those first few months before he came to trust me. I now understood why he didn't know his name, respond to verbal cues, or make sounds that we could interpret as words. With nothing to look at or listen to, perhaps he flapped his hands for something to do.
Because of his incredibly acute sense of touch, we hadn't recognized Jon's hearing loss. When we walked into a room, the vibrations on the floor signaled him to turn to us. When the doctor used a tuning fork, he turned toward the vibrations. When my husband came home at night and opened the kitchen door, Jon quickly turned to face the change in the air flow.
I drove home from the audiologist's office with a heavy heart. All of the blindness skills we were learning weren't enough. Our audiologist had given us a new list of resources, but where should we begin? I wasn't entirely confident in my ability to parent a child who experienced the world so differently from the way I did, but I was determined to be a good mom to my son.
That afternoon I called the John Tracy Clinic in California. The clinic offered a distance learning program for families of deafblind children, and I signed up immediately. When my packet of information arrived, I was hooked. I loved the program's approach to family education. It focused on the importance and contributions of every family member.
Soon after we started the John Tracy program, I discovered a school for the deaf twenty-seven miles from our home. This school, too, offered early intervention services, and we signed up. Jon was now attending a program for the blind and a program for the deaf. He was the only deafblind child in either one, and none of the teachers had any experience working with the deafblind.
A blind baby hears something in the distance and is curious about the sound. A deaf baby sees movement and activity and wants to join in. My baby didn't see or hear. He knew only personal touch, a change in temperature, a breeze, a vibration. Helen Keller is reputed to have said, "Blindness cuts us off from things, but deafness cuts us off from people." Deafblindness is unique because it impairs the natural desire to connect with both people and things. How would I motivate my baby to explore a world that he didn't know existed? He needed a link to the world, and I would be that link. But how would I create meaning for him through touch alone?
The infant brain is very malleable. When the right stimulation occurs at an early age, neuronal connections are made and the capacity for learning improves. Jon's early intervention teachers showed me how to use his senses of touch and smell, as well as his awareness of body position and movement. They also encouraged me to help him use his limited eyesight to learn about the world. By the time he was two, Jon had developed some usable vision. He could see an object if he held it two to three centimeters from his eyes. It was not really functional vision, but it provided another channel through which he could interpret what he was touching. The more meaning he derived from his experiences, the more curious he became.
Jon's orientation and mobility instructor cautioned me about putting him in a playpen. If he had free reign of his environment, he surmised, Jon would be more likely to explore. The more he explored, the more he would gain knowledge of the world.
Our hardwood floors served Jon's mobility needs very well. He would lie on his back and propel himself by pushing with his feet. He slid all over the floor, taking in information from his largest sensory organ, his skin. He explored every inch of every piece of furniture from the floor up to as high as he could reach. Then he started to climb. Any time we put him into his crib, he climbed out. Despite our best efforts to keep the stairs off limits, he frequently climbed up the outside of our open staircase, and would hang from the handrail ten feet above the floor! My stomach jumped into my throat nearly every day with his antics, but I kept focused on my goal of encouraging him to be independent and curious.
Jon started walking at age three and a half, and then his knowledge of the world grew exponentially. He liked to move the furniture around. Within ten minutes he could rearrange my living room completely. When he started walking outside, he discovered that his long white cane provided him with incredibly interesting information. He would measure bushes by the cane's length. He would let the cane roll down the neighbor's driveway. He dropped it down sewers and off bridges as he tried to touch the bottom.
When Jon was five, his favorite toy was a refrigerator box that he had made into a fort. It was complete with artwork drawn on the walls with smelly markers, and it was lighted by flashlights placed in holes he had cut in the walls.
Our strategy for encouraging Jon's curious exploration was working. Jon was becoming both clever and creative. Yet another challenge remained. How would we bring language to his experiences?
I started learning sign language as soon as the first information packet arrived from the John Tracy Clinic. I taught Jon everything I learned. In addition, we were both learning to sign at the school for the deaf. After a year, however, I realized that to become fluent we needed a Deaf teacher. The term Deaf, with a capital D, refers to someone who uses American Sign Language and considers himself or herself part of the Deaf community; it is a cultural identification based on a shared language, ASL. I enlisted the assistance of a Deaf family in our town. We met weekly, and they became our lifeline to the Deaf community. It took me about five years to become fairly fluent in sign language.
At about this time, it became apparent that Jon could not read print without fatigue. I began a quest for Braille instruction. I knew that I faced a huge challenge. At that time there were no laws about considering Braille for a partially sighted child. Nonetheless, I was certain that Braille provided the only hope for my son to attain literacy. Unfortunately, our state agency for the blind didn't agree. Upon my insistence, we decided to get an impartial evaluation. Six individuals--three blind and three sighted--would evaluate Jon and offer their opinions. We agreed to go along with the consensus. The six evaluators unanimously agreed that Jon should learn Braille.
Our next challenge was to make the classroom instruction at the school for the deaf accessible. Jon had always used tactile sign language. He took in signs by placing his hands on top of mine or by touching the shape of my hands. If he wasn't in a one-on-one situation with his teacher, he had no idea what was going on in the classroom. Our school district, which was always supportive, provided a one-on-one interpreter and/or teacher of the deaf. These professionals provided tactile sign language for Jon until his high school graduation.
Some of the other tools that leveled the playing field for Jon were technology and deafblind-specific orientation and mobility. He benefited from accessible classroom materials including large print, colors, tactile graphics, and Braille. We also trained some of his classmates to be support service providers (SSPs). SSPs act as the eyes and ears for a deafblind person. Jon had peer support service providers instead of adult paraprofessionals for in-school activities.
Jon graduated from high school in 2008. He was a member of the National Honor Society. For his work in the fine arts, he received the 2007 VSA Arts of New Jersey Arts Excellence Award in fine art as well as a New Jersey Governor's Award in Art Education.
Jon enjoys all kinds of sports, including golf, martial arts, boxing, hiking, and rock climbing. He is the only deafblind belayer in New Jersey.
As for communication, Jon uses whatever works. In some situations it is tactile sign language. In others it is Braille or a notebook and marker. He uses AIM and email to keep in touch with friends, and he surfs the Web with the assistance of screen enlargement software and a Braille display. He uses a videophone to call me and we communicate through a webcam-like device in sign language. He uses the videophone along with the relay system to order a pizza or call a friend who is hearing. He uses a long white cane and travels independently on paratransit. Right now Jon is taking classes at a community college while he completes a vocational training program for the deafblind at the Helen Keller National Center.
I'm not going to tell you that blazing this trail has been easy. In fact, it's been the biggest--and most rewarding--challenge of my life. I've always believed that with the appropriate skills and accommodations--a leveled playing field--Jon would live a full life as an active member of his community. I've never given up on this quest. I'm grateful every day for all that he and I have learned from each other.
I encourage you to believe in yourself as your child's first--and best--teacher. If you don't take the lead, who will? Today it's much easier to access resources, connect with others in a similar situation, and search for innovative solutions than it was twenty-one years ago. A host of resources empower you in opening the gateway of opportunity for your child. Never give up on your dreams or expectations, and I promise you that this journey will reward you in ways that you've never imagined.
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