Parents of deaf children must navigate sounds, signs and choices early
Ravell Call, Deseret News
KAYSVILLE — When Colton Rosbach failed a few hearing tests during his first 3 ½ months of life, it was the least of his parents Shelli and Phil Rosbach's concerns.
Weighing less than 2 pounds at birth, Colton's serious health issues eventually resolved as he grew. His hearing, however, never improved, leaving it up to his parents to decide how their infant son would communicate for the rest of his life: with his voice, or with his hands and possibly his voice.
Parents across the state face the same decision, which comes down to choosing between Listening and Spoken Language — which can require cochlear implants — or American Sign Language-English for their deaf or hard-of-hearing children. And they oftentimes make that choice when their children are just a few weeks or months old.
Shelli Rosbach, of Kaysville, felt the full weight of the decision. She worried that if she chose one path, Colton wouldn't take to it and at age 3 or 4 or 5 they would have to start from scratch, his language delayed.
"A baby is a baby. They can't tell you," she said. "It's really hard to try to determine what is best for your child at that exact moment."
The state's Utah Schools for the Deaf and the Blind offers a Parent Infant Program for deaf children up to 3 years old to help new parents choose a language model for their child and immerse them in it before they ever attend school.
"It's so incredibly urgent to move as fast as possible to give our children language access," said Day Mullings, director of the Parent Infant Program. "If we're there to teach the parent to teach the child, a 1-week-old child is not too young. … It sounds a little over-the-top, but it isn't."
The program has had its share of controversy in recent months and years, with some members of the deaf community saying the LSL program is clearly favored, and parents given biased information.
Mullings said they've worked to address any lacking information.
"We were getting lots of feedback that parents weren't getting the information that they needed," Mulling said. Which is why last December, the schools assigned new orientation specialists who are the first point of contact for all families that receive word their child is deaf.
Family is boss
Specialists Ann Lovell and Sharelle Goff champion the very different language philosophies, but they're dead-set on making sure they're both present at every in-home family appointment, including those in the far corners of the state.
Lovell is the school's LSL specialist. She has cochlear implants that allow her to hear and she speaks. Goff communicates through American Sign Language-English. Together, they meet with every new referral to explain their options.
"We'll be free and upfront about the fact that we do have different opinions, but we're going to give them unbiased information," Lovell said. "We both support that they hear the other side."
Goff said they use no pressure tactics. They simply equip parents with information.
"The family is basically the boss in this," Goff said through an interpreter. "We keep (visiting with families) and do different activities to increase their knowledge — anything that the parents want to do to have more exposure and understand their options."
That exposure may include observing preschool classes at USDB, interviewing deaf adults or attending social events for the deaf.
Once parents decide which path their child and family will take, language therapists meet with them in the home to teach them tactics that will bring out their child's language, whether LSL or ASL-English. Around age three, the child enter ASL-English or LSL preschools and continue on at the Utah Schools for the Deaf or enter their neighborhood schools. About 80 percent of parents choose LSL, with 20 percent choosing ASL-English, according to Mullings.
The Rosbachs, however, knew the answer for them would not be so cut and dry.
Shelli Rosbach said she realized one night that if they went strictly the LSL route, she would have no way of calming her young son if he woke up from a bad dream, since he doesn't sleep with his external implants on.
"I'm going to be in here with my child and I'm not going to be able to communicate with him at all without going through the process of putting the implants on," she said. "I wanted to be able to communicate with my child no matter the situation. … That's when we decided that ASL needed to be a part of his life."
While ASL-English has an oral component, LSL has no sign language component, a fact some parents in the deaf community believe is bad for children.
The 'right' way
The Rosbachs chose ASL-English for Colton, who is now 28 months old, even though they elected to have cochlear implants surgically implanted earlier this year. The implants were "turned on" in early September.
An ASL-English therapist employed by the Utah Schools for the Deaf comes into their home about twice a month to teach the family sign language. They go elsewhere for his oral therapy, which isn't as helpful for the family since the appointments are during the day when her other two children are at school and her husband is at work, Shelli Rosbach said.
"I would love to have LSL in my home as well as ASL," she said. "Because I'm forced to choose, I have to go to an outside, private therapy to get the oral side."
Mullings said the school has opted not to teach LSL and ASL simultaneously because research shows it isn't effective. ASL and spoken English have different grammar structures.
"When you do that, one language suffers," she said. "So that's why we've chosen the path of focusing on language rather than trying to do everything."
She said the school's approach is consistent with national standards.
"USDB seems odd to the people that are here and don't understand that outside of this state, this has been going on and has been for decades," Mullings said. "It's not new, it's not innovative, it's not cutting edge. It's best practice."
The Rosbachs said they experienced pressure from families and experts both within and without the schools on what is the "right" way to teach a deaf child, something that makes the decision-making process even more difficult.
"During that process, a lot of people tell you if you do implants you should not sign. … It's frustrating from a parent's perspective that so many people try to push you into one channel or the other," Phil Rosbach said. "There's a very strong school of thought amongst a lot of people that you either sign or you do implants, you don't do both."
The Rosbachs have turned to a parent-driven deaf organization called Hands and Voices for the support they crave.
"We're trying to connect with other families because we do feel like we're kind of standing alone," Shelli Rosbach said. "It just feels so divided and it's a hard place to be when you're already dealing with issues for your child. … It's a lonely feeling."
Superintendent Noyce said claims that he favors LSL are unfounded, and all programs have taken hits amidst recent economic turmoil.
"There's so much just conversation and gossip and distrust," Noyce said. "But there's no conspiracy at the Schools for the Deaf and the Blind to withhold anything from any children."
He said the schools have faced challenges and cut backs that he and his staff are trying to work through.
"We have some needs that are really unmet," he said."We don't have the personnel always that we want. ... We have two building needs. ...We're bursting at the seams. … Too often this controversy, as well call it, needs to be put aside because we have too much work to do."
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