Journal Special Feature...
'Hope over reason'

Mother says daughters beat
hearing impairment with strong faith

 

BY MARGIE RICHARDS

When Tommy and Sheila Weldon's daughter, Amber, was diagnosed at age two with a profound hearing loss, the couple said experts painted a bleak future for her.

But that future has turned out to be anything but bleak - for her or younger sister, Laura.

Besides being outstanding students, Amber, 19, a sophomore at North Georgia College in Dahlonega, and Laura, a senior at Madison County High School, have received numerous awards and scholarships, not only for their grades, but for their extracurricular activities and community service achievements.

Amber was most recently chosen as one of 74 college recipients of the 1998-99 scholarship from the Alexander Graham Bell Association for the Deaf in Washington, D.C. This is the second year in a row she has received this scholarship, which is awarded to students from the U.S. and abroad who have severe to profound hearing losses that occurred before they were able to acquire language. Amber also received a special 75 Stars Award from the Bell Association several years ago, during the reign of Miss America Heather Whitestone, who also suffers from a hearing impairment similar to the girls.

A 1997 graduate of Madison County High School, Amber was active in many clubs, serving as President of Interact and secretary of the Y Club. She was a percussion member of the band from sixth through tenth grades, when she chose to try out for color guard.

One of her proudest achievements, according to Amber, was receiving one of two $500 scholarships from the Rotary Club, out of a field of 45 candidates.

"Although not a large monetary scholarship, it was something I worked hard to achieve, and did it all on my own," Amber said.

Since being at North Georgia, Amber has received a leadership award, been selected as part of a student leadership team and been inducted into the Alpha Gamma Delta sorority. She is also involved in the Baptist Student Union and the BSU Clowning Ministry.

She is majoring in biology education and is finding college rewarding as well as challenging. "The classes are small, with no more than 40 people (usually 30-35) and the professors are willing to spend time outside of class to help," Amber says. The major accommodation that the family asked for - and received - was a strobe light in her dorm room that will come on if the fire alarm were to go off while she is alone there.

Just a couple of weeks ago, Laura was awarded a Sertoma Scholarship which was presented to her at the Athens Commission on Persons With Disabilities banquet whose guest speaker for the event was none other than Whitestone.

The Sertoma Club is a service club that works for the benefit of those with hearing problems. Laura said she was thrilled to have the opportunity to eat lunch with Whitestone, have her picture taken with her and get her autograph, as well as hear some of her experiences in overcoming hearing loss. Amber received the same scholarship just last year.

Laura has been a member of the color guard since her freshman year in high school, serving as captain this year. She too is president of the Interact club and a member of the Y Club. She has participated in the Miss MCHS pageant and tap dances for the talent portion.

She played softball until middle school, when an accident caused further damage to her hearing. At this point, Laura and her parents decided it was time to pursue another sport she had a passion for - tennis. She played doubles on the school tennis team for the first two years, switching to singles in her junior year, and has been a recipient of the Red Raider Award for the past three years, which is based on talent, spirit and good sportsmanship.

Last year she was selected co-Most Valuable Player, a real thrill for her, as she was nominated by her teammates.

Other scholarships Laura has received include the Discover Card scholarship for being an outstanding student and an educational scholarship on the state level from the Optimist Club for her speech "My Commitment to the Future," highlighting her concern for underprivileged children.

She is currently considering both Emmanuel College in Franklin Springs and Toccoa Falls Christian College in Toccoa for her future education. Career choices at this point include being a youth minister or small business administrator.

 

A GENETIC SYNDROME

Tommy and Sheila Weldon were living in Macon when they became increasingly concerned about Amber's frequent falls, which often left her with mild concussions, nausea and the inability to walk for a day or so after the event. Mr. Weldon said that they were puzzled as to whether her problems with balance, more noticeable after a fall, were the cause of the falls, or if the falls themselves were causing the balance problems. Another concern was that at age two, although she was jabbering, she was still not able to pronounce her words clearly. They saw many specialists during this time, such as neurologists and orthopedic surgeons, before a doctor finally sent them to a ear, nose and throat specialist who diagnosed Amber with a recessive genetic disorder known as Pendred Syndrome.

Doctors told the Weldons that this meant that both of them carried a recessive gene for the disorder, showing no symptoms themselves, but giving them a 25 percent chance that any children they had would have the syndrome.

When Laura came along, Sheila says she noticed right away that her baby couldn't hear, but because it was so unlikely that two siblings would have Pendred - only one in 60,000 people even carry the recessive trait - doctors argued with her, thinking she was "just paranoid."

However, Laura was soon diagnosed with Pendred and a somewhat more profound hearing loss than Amber.

The girls also exhibit another facet of the syndrome - a mild thyroid disorder, for which they take medication.

"With Amber, we had thought epilepsy, brain tumor, all kinds of things," Mrs. Weldon said. "So we were actually relieved to get this diagnosis."

But experts painted a bleak picture, suggesting they send Amber to Cave Springs, a hearing center for the deaf, where sign language is taught, telling them that with the kind of hearing loss the girls had, they might never talk, never progress beyond a third to fifth grade reading level and certainly never sing or dance.

"This is what happens when you let hope override reason," their mother said. "They've far exceeded the expectations of the professionals. If we had listened to them, we wouldn't be talking about this (their achievements) today."

"We are continually amazed," Mrs. Weldon added. "They can do anything they want to."

 

EARLY INTERVENTION

"We decided instead on a program of early, constant intervention," their father said. They began by moving from Macon to DeKalb County where there were a variety of early intervention programs and also to be near Emory University hospital specialists.

They enrolled Amber and then Laura in Coralwood, a special public school which serves all types of disabilities. Here, according to their mother, they were literally "bombarded" with speech and language activities five to six hours a day, five days a week.

"It was a lot of playing to the girls," Tommy said. "But it was 'play with a purpose.'" Their parents, and the school, filled all of the girls' waking hours with this purposeful play to enable them to learn to speak and to "hear" not only by sound (they were by now fitted with hearing aids) but by reading lips and facial expressions, something Amber says she finds especially useful. "

"You can usually tell by someone's face when they've asked a question - they usually raise their eyebrows," she said.

Their mother added that although hearing aids are capable of helping with loudness levels, they don't help with sound discrimination.

Amber had moved from Coralwood to a regular public school in first grade, when her dad received an offer to transfer to the ASCS office in Madison County. Their first concern was their daughters' continued progress, so they were pleased to find that the faculty and staff of Comer Elementary, along with the special endowments associated with the Gholston fund, were willing to work to accommodate their particular needs.

RESA also helped by providing a hearing-impaired teacher based in oral education who worked not only with their children, but with other hearing-impaired students from surrounding counties.

"We found that the staff (at Comer) did not put up barriers to the girls, but were instead open- minded and helpful," Mr. Weldon said.

He said the family has enjoyed living in Madison County all these years and consider it their permanent home. Coincidentally, Madison County is where Mrs. Weldon's mother, Hazel Gordon Cleveland, grew up.

"A lot of what they (Amber and Laura) have accomplished so far has been with the support of our community, church (Comer Baptist), school system and RESA. The fact that most people here have been willing to give them a chance speaks well of a county," Mr. Weldon said.

The family is also hopeful that the girls will be able to hear normally in their lifetime. There are currently new breakthroughs in the medical field which have allowed scientists to "grow hair cells" in the inner ear of birds and some mammals - something they had previously thought not possible.

Since the girls suffer from anatomical problems of their inner ears, such as shorter hair cells, this offers significant hope for the repair of their hearing abilities.

Mrs. Weldon said she now sees why the professionals involved in the girls' early care were so concerned, but the family's determination to keep the children in "the mainstream of society," together with their faith - as well as the numerous technological and educational advances in the past 20 years - have made all the difference.

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