By ERIN McCRACKEN
A.J. Drawbaugh babbled happily as he toddled around his parents’ Mechanicsburg kitchen on a recent Friday.
“Hi,” the 1-year-old said multiple times, waving and smiling.
His parents – both deaf – didn’t hear him.
His father, Justin, can only hear A.J. if he’s yelling right next to him, so he usually communicates using hand signals and touching. Justin, 30, smiled and waved to his son to say “Hi.”
His mother, Loree, has slightly better hearing than her husband and learned cued speech – communication based on parts of speech. She said “Hi” back to A.J., but, like Justin, relies on American Sign Language and interpreting services to communicate.
In a few months, A.J. won’t only be learning to talk, he will be learning to sign – the primary way he’ll communicate with his parents.
Through an interpreter, Loree, 36, said that A.J. had a 50 percent chance of being deaf. After he was born – the Drawbaughs had an interpreter in the delivery room – doctors gave him a hearing test and he passed.
The Drawbaughs were happy. They knew it wouldn’t be easy to raise a hearing child, but they are used to facing challenges.
After learning he was deaf when he was 10 months old, Justin’s parents learned sign language to communicate with him. He grew up in Springettsbury Township, attended Lincoln Intermediate Unit and then took mainstream classes with an interpreter at Dallastown Area High School. He didn’t feel accepted by his peers but pushed himself to join the swim team and student council.
Loree, who is originally from Connecticut, was born hearing, but a case of meningitis as an infant left her with significant hearing loss. Her family didn’t learn sign language and she struggled with reading and writing. State budget cuts to special programs forced her to attend two different high schools.
Both Justin and Loree blossomed after they enrolled at RIT’s National Technical Institute for the Deaf, Justin in 1998 and Loree in 1993. For the first time, they could socialize, make friends and relate to other people. It was like culture shock in a good way, Justin said.
Loree went on to do social work for the deaf and became the first deaf teacher in Mechanicsburg Area School District, instructing both hearing and hard-of-hearing students with the help of interpreters and aids. In 2004, Justin landed a job at Defense Logistics Agency in New Cumberland. Last year, with the help of interpreters, he became the first deaf person in Cumberland County to serve jury duty.
The couple, who married in 2007, love to travel and to go to Baltimore Orioles and Ravens games. They also love being a part of the deaf community.
“We can do everything that other people can do, except hear,” Justin said through an interpreter. And now that includes raising a child.
While A.J. is young, keeping him in sight is important. When he is napping, Loree, who is now a stay-at-home mom, relies on a monitor that vibrates and flashes when he cries.
“He’s a handful,” she signed with a smile.
The Drawbaughs want to rely on total communication – signing and speaking at the same time – when A.J. gets older.
They don’t want A.J. to have any language barriers, so they plan to have him evaluated by an early-intervention specialist. They hope to learn daily exercises that will help his language and speech development and comprehension.
The Drawbaughs also want to get involved in Kids of Deaf Adults programs, so A.J. will be able to interact with other hearing kids who have deaf parents.
They know A.J. will face communication challenges in the future. At times, he might have to act as an interpreter for his parents.
But A.J. will also have the ability to communicate in more ways and with more people than other hearing children.
Helping people understand the Americans With Disabilities Act
Justin Drawbaugh of Mechanicsburg said that there already isn’t enough empowerment and support for deaf and hard-of-hearing people like himself. He is frustrated when people don’t know about the Americans with Disabilities Act.
“These things drive me crazy,” he signed.
Many venues and businesses don’t know that they’re required by law to meet the needs of deaf and hard-of-hearing people.
Sharon Behun, director of The Pennsylvania Office for the Deaf and Hard of Hearing said her office provides ADA literature to help people better understand the law. It also helps businesses and venues develop in-house protocols and procedures for assisting deaf and hard-of-hearing individuals.
Usually, businesses are more than willing to comply after they learn the law. But some are not as flexible.
ODHH helps individuals file complaints with The Pennsylvania Human Relations Commission, Department of Justice or Office of Civil Rights.
“Our goal is to solve the issue before it gets to that level,” Behun said.
The ODHH, which was created in 1987, also works with other state agencies, to make statewide changes. Behun said her organization teamed up with the Pennsylvania Department of Corrections to help state correctional facilities meet the needs of deaf inmates.
The ODHH is also trying to partner with veterans organizations, since there has been an influx of veterans with hearing loss.
For the past three years, ODHH has held deaf town hall meetings and community forums across the state to introduce people to the organization, advocacy issues and technology.
Number of Deaf and hard-of-hearing individuals versus number of interpreters
Pennsylvania does not have an accurate count of people affected by hearing loss.
Sharon Behun, director of the Pennsylvania Office for the Deaf & Hard of Hearing uses projections and interpretations of old data, some of which dates back to 1993.
The 2010 census did not collect information about people with disabilities, Behun said. The American Community Survey, an ongoing survey conducted by the U.S. Census Bureau, includes one disability question, which will be used to create sample sizes.
Even though ODHH doesn’t know the exact number of deaf and hard-of-hearing people in Pennsylvania, they know it grossly outweighs the state’s 240 interpreters.
In 2006, Pennsylvania passed Act 57 – the Sign Language Interpreter and Translator State Registration Act.
“It basically protects the deaf consumer,” she said. To register as an interpreter, people have to meet eligibility requirements to be recognized as nationally certified.
Prior to the law, which took a decade to pass, anyone who knew sign language could say they were an interpreter. This meant that not all deaf people were getting accurate translations.
“That did more harm than good,” Behun said.
Hearing tests for infants
In 2001, Pennsylvania enacted The Infant Hearing Education, Assessment, Reporting and Referral Act.
The legislation required the Pennsylvania Department of Health to establish a system to screen all newborns for hearing loss within the first 30 days of life.
Department of Health spokeswoman Stacy Kriedeman said that prior to the 1990s, most children were not identified as hard-of-hearing until they were 2 or 3 years old. Between 1999 and 2005, Pennsylvania birthing hospitals were awarded grants totaling $5.6 million to set up infant hearing screenings and train staff.
Sharon Behun, director of the Pennsylvania Office for the Deaf & Hard of Hearing, said the earlier children are diagnosed with hearing loss, the better their chances are of developing normal speech and language comprehension.
Today, Pennsylvania hospitals with birthing centers screen nearly all newborns for a hearing loss. Through state and federal funds, portable screening units are available at no cost to freestanding birthing centers and midwives.
On April 15, U.S. Sens. Tom Harkin (D-Iowa) and Olympia Snowe (R-Maine) introduced The Early Hearing Detection and Intervention Act of 2010. If passed, the act would authorize funding for early hearing loss detection and intervention through 2015.
Kriedeman said the legislation could provide a mechanism for Pennsylvania hearing loss screenings to receive more funding.
Audiologist Regina Presley said newborns can be tested with auto acoustic emissions, which sends clicks into the baby’s ear to see if the sound echoes. If the sound bounces back, that’s a good sign, she said. Auditory brain response measures the brain’s reaction to sound.
Justin and Loree Drawbaugh’s toddler A.J. had a 50 percent chance of being deaf. After his January 2009 birth, he was tested and passed the hearing exam.
But what if A.J. had been born deaf? Would his parents have considered implants for him? The Drawbaughs say probably not. They want A.J. to know that – deaf or hearing – he’s special.
Behun said that when parents ask her for advice about their deaf children, she presents all the options, including cochlear implants.
Presley said that implants are approved for children one year and older, but parents of deaf newborns struggle with the decision: Do they get implants for their child in hopes that they will have better speech and language comprehension? Or do they wait to let the child decide if he or she wants to be part of the hearing world or deaf world?
Not all parents that decide against implants are from the deaf community, Presley said.
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