Future Reflections Winter/Spring 1997, Vol. 16 No. 1
by Debra Conway
[PICTURE] John and Dawn Salka with Colleen at the 1996 NFB Convention.
Editor's Note: John Salka, father of Colleen featured in the article below, is a member of the board of the National Organization of Parents of Blind Children, Division of the National Federation of the Blind. This article is reprinted from the June 23, 1996, Times Herald Record, Orange County, New York.
Dawn Salka pushes away the Fisher Price preschool pop-up toy and lifts her daughter from the living room floor. She draws an imaginary line across the 3-year-old's palm and points to the high, knotty pine ceiling.
"What's that?" she asks out loud, again drawing the line and pointing to the ceiling. "What's that?"
At first the bespectacled little blonde seems to be still groggy from her recently interrupted afternoon nap. Her head bobs and flops as she scans around the room. Finally, she fixes on her mother's extended pointer and follows the implied direction to the overhead peak.
Colleen smiles, recognizing the answer. She forms her own thumb and pointer into a circle, spreading the three remaining fingers like turkey feathers.
'A fan,' she silently answers in Signed English. "Right. It's a fan," says Mrs. Salka, smiling and hugging her youngest child to reinforce her answer. "She used to confuse 'fan' with 'wind,' thinking it was the breeze she was identifying. Very good."
For a child like Helen Keller--deaf-blind, as it is properly referred--Colleen has made great strides in her three short years. That's due largely to her own hard work, says one of her teachers, Lucy Lotito. And to the hard work of her "incredible" family who has doggedly scraped for answers and approaches to the rare condition.
"When she was born, I knew right away that something was wrong," says Mrs. Salka, a night nurse at St. Luke's Hospital who has four older children. "But, unlike a regular blind person, her eyes didn't appear different. They looked normal."
By the time Colleen was 8 weeks old, Mrs. Salka had convinced her husband, John, a New York City fire fighter, that their newborn wasn't tracking movement. Thus began what she calls "the course of specialists: "the genetic specialist, the neurologist, the ophthalmologist, the audiologist, the pediatric neurologist, the pediatric ophthalmologist, the pediatric audiologist.
One of them finally said, "I'm sorry. She's deaf." And another ran a test called the Visual Evoked Potential that measured Colleen's retinal response to light. She flatlined, leading the specialist and family to believe Colleen would be totally blind.
By the time she was 6 months old, Colleen, like all blind babies, was already developmentally delayed. She had no reason to raise her head to look at something, or to roll over, sit up or crawl to get to a fascinating object--she simply couldn't see any.
She began morning therapy sessions at New Windsor's Infant Toddler Learning Experience and in-home sessions with specialists such as Ms. Lotito, a teacher of the visually impaired who contracts through Orange County Public Health.
"So little is known," she says. "I always go in and do my own tests."
The first test she did was to sit with Colleen in a darkened room with only a florescent "black" light. Colleen responded to a white tag on a glove. "We were so excited," Ms. Lotito says. "We know we had our work cut out for us, but it meant there was something there to work with."
What the Blooming Grove couple eventually learned was that Colleen's eyes are perfectly normal, anatomically. But there is a cross-over in her cerebral cortex that affects the way her brain processes what she sees.
Through thrice-weekly sessions with Ms. Lotito--involving light boxes similar to x-ray view boxes, luminescent materials, colored caps on flash lights--Colleen is retraining her brain to accept and process visual images. She has progressed to now seeing in normal room illumination, but only to the point of fatigue.
"Sometimes she gets to a point and she just shuts down," says Mrs. Salka. "It's like a computer that runs out of memory. One minute she's tracking fine, identifying small pictures, and the next she doesn't see us waving our hands right in front of her face."
But the windows of opportunity seem to open for longer and longer periods, Ms. Lotito says, leaving her hopeful that Colleen may someday discern letters and read. In the meantime, however, and as a back-up to periods of fatigue, she is teaching Braille.
The future isn't nearly so optimistic about Colleen's hearing where various hopes have already been dashed.
"From the beginning, I started reading everything I could on blindness, reading everything I could on deafness, calling everybody I could think of, including the authors, saying, 'Here's my situation, what do you suggest?'" Mrs. Salka says. "At one point, someone asked when we planned to get her aided, meaning fit with hearing aids. No one had ever told us to do that before."
On the theory that even a profound hearing loss could be aided into hearing at least the blast of a jet, Colleen was fit with hearing aids. For two years, the family and therapists went through the motions of teaching her to recognize various sounds--a knock at the door, the vroom of a vacuum--all to no avail.
When Colleen was 28 months, the Salkas were excited to learn about the prospects of a $35,000 operation that would replace/implant one of her cochleas, the coiled, shell-like division of her inner ear. They went through extensive initial tests, including a CAT scan, that eventually revealed Colleen hadn't been born with any cochleas to replace.
Her deafness would be total and permanent.
"It was heartbreaking for all of us," Mrs. Salka says, "but James (her 9-year-old son) took it the hardest. He cried for a long, long time. 'She's blind, why does she have to be deaf, too?' he'd ask. And we'd have to say we didn't know."
There were none of the usual genetic causes, she says. None of the usual pre-natal viruses, like rubella, often associated with deaf-blindness. "Not knowing the cause has been the toughest to take," Mrs. Salka says. "It's been hard. And now it's compounded by the various dynamics going on in the house. Maureen (the 7-year-old middle child) has a very hard time with the idea she can't bond with a normal sister. The boys (John, 10, James, 9 and Brian, 5) lay in bed at night and talk. But she can't. There's resentment and vying for attention all around. Everyone that comes to the house, comes to see Colleen.
"Usually I'm too busy to let myself feel anything," she continues. "Then it builds. Then it hits me all at once. One day in church I was listening to Maureen in the choir and it hit me that Colleen will never hear music. I began to sob so loudly, I think everyone heard me."
Because of the rarity of deaf-blindness, (she's seen statistics that indicate less than 0.1 percent of the population is affected) there are no support groups to turn to. Fortunately, by attending regular conventions of the National Federation for the Blind--where the Salkas have drawn hope from seeing thousands of high-functioning, happy people with handicaps--they've created their own support network around the county.
"It was not until we went to our first convention in Detroit, and met a mother of a deaf-blind 15-year-old, that I began to get a handle on what we are dealing with," Mrs. Salka says. "The mother said Colleen's not a deaf person with a vision impairment. And she's not a blind person with a hearing impairment. This is a unique set of circumstances requiring a totally different approach."
The first recommendation the mother made was to immediately start signing in Colleen's hand. She showed Colleen how to sign "Mom" and "Dad" and within a few minutes the toddler was repeating it perfectly to the appropriate parent.
"It brought tears to our eyes," says Mrs. Salka who came right home and enrolled in a correspondence course from California's John Tracy Clinic, a clinic named for actor Spencer Tracy's deaf son. Everyone in the family started to learn. And now they speak and sign all the time so Colleen will always be included.
The helpful mother also told the Salkas that Colleen needed an intervenor, someone who interprets the environment for a deaf-blind person. It's what Anne Sullivan did for Helen Keller, someone to say/sign, "Your mother just left the room to go make dinner. Your brothers and sister are lying on the floor doing their homework."
Prior to Jan. 17, when Sharon Napoli was killed by a hit-and-run driver in a much-publicized accident outside of Newburgh, she was Colleen's intervenor. Now that task falls to therapists and Mrs. Salka, which is rough, she says, because she's usually the one making the dinner or doing whatever needs interpreting.
Often Maureen or one of her brothers, particularly Brian, who has not yet started school and is home more, will do that, especially while watching television together. But Brian's vocabulary is limited, and an ideal intervenor is more advanced than the deaf-blind person and can advance her learning.
But the Salkas are hopeful and propelled by their unshaken faith. They prayed to St. Lucy, the patron of the blind, and they were sent a teacher named Lucy who has already worked wonders with Colleen. In the last six months, her vocabulary has jumped to about 75 signs with four or five more added daily. As soon as they ascertain the patron of the deaf, he or she will be invoked as well.
In the meantime, the Salka's network of saints in Canada, Mexico, Oregon, Colorado, Kansas--invoked through the phone calls that average $270 a month--regularly quell fears and lead their way. "I was concerned recently that Colleen still needs a walker to get around, or, for long distances, a wheelchair (which her siblings all fight for the chance to push,)" Mrs. Salka says. "One mother, who has a son who is only blind, told me he didn't walk until he was 4. I figured, OK. We're getting there. We can do this.'"
For more information on deaf-blindness, call the National Federation of the Blind at (410) 659-9314.