Mandy McClellan’s instincts told her something was wrong when her firstborn daughter’s language seemed delayed, and she was right.
Two of three daughters with cochlear implants later, she helps other parents navigate the challenges of raising deaf or hard-of-hearing children.
The 45-year-old Conway woman is a co-founder of the Arkansas Hands & Voices chapter, a nonprofit organization that is celebrating its 10-year anniversary this year. It brings together professionals with families of children who are deaf or hard of hearing.
“Everybody’s story is unique,” McClellan said.
McClellan said her daughters, who would be “100 percent deaf without their cochlear implants,” are smart and independent, “just normal kids,” but it didn’t happen without a lot of work
and help from experts and other families.
She and others attended a conference in 2007 about hearing loss and investing in families, and they decided to create a local group. The National Hands & Voices organization caught their attention, so they started an Arkansas chapter. The group offers education, support, training and fun activities, McClellan said.
McClellan is also the coordinator of the Arkansas Hands & Voices program Guide By Your Side, which trains parents to meet with parents of children who are newly diagnosed with hearing loss, “to make sure they’re given unbiased information and emotional support.”
That’s not all. Her full-time job is coordinator for the National Center for Hearing Assessment and Management. Her main job is to coordinate the Early Hearing Detection and Intervention (through the Arkansas Department of Health) annual meeting, which brings together 1,000 people each year.
“All three of my children passed their newborn hearing tests,” McClellan said.
Abby, 17, is about to graduate from Conway High School; Keely, 13, is a seventh-grader at Ruth Doyle Middle School. Both of them have cochlear implants. Sophie, 11, a fifth-grader at Ruth Doyle, is “my one who hears everything,” McClellan said. “The joke is she got all the hearing for both girls.
When Abby was born, McClellan said, she noticed that her nephew, just eight days older, was ahead in many ways. Abby was 2 when they noticed her speech was delayed.
“His language was better than hers; he did everything earlier. I’m not really competitive, but I thought girls were ahead. I thought her speech was a little delayed; everybody thought I was crazy. They said, ‘She’s just stubborn; she’s just ignoring you.’”
And while her daughters do have a stubborn streak, she said, that wasn’t the problem. After an ear infection, the pediatrician sent her to an ear, nose and throat doctor. He sent her to Arkansas Children’s Hospital.
Abby was almost 3 years old when she was diagnosed with hearing loss.
“She had a progressive hearing loss, and it came to the point she was profoundly deaf,” McClellan said.
Abby underwent her first cochlear-implant surgery when she was in second grade; then her second one six months later.
It’s a more extensive process than many people realize, McClellan said. “It’s major, major,” she said.
The procedure took a couple of hours, and Abby’s head was wrapped “really tight with a bandage to prevent swelling,” she said.
Although components of the electronic device are implanted under the skin, the external portion is behind the ear and is removable; it bypasses the damaged part of the ear, according to the National Institute on Deafness and Other Communication Disorders website.
McClellan said the device isn’t activated for three weeks after it is implanted, and the stimulation to the hearing nerve is mapped on a computer.
“It’s rethinking how to listen and how to hear with that technology,” she said. “Adults who’ve had this say it sounds mechanical at first, but then your brain adapts.”
When McClellan gave birth to her second daughter, Keely, “I was watching her like a hawk,” she said. This time, “I was looking for it.”
Keely, who had frequent ear infections and fluid in the ear, was diagnosed with mild-to-moderate hearing loss at age 1.
“She was diagnosed younger; she progressed faster,” McClellan said. Keely had cochlear implants before she started to kindergarten.
The best way to prevent children from teasing kids with cochlear implants, McClellan has found, is to explain them, “almost like a show-and-tell.”
Even though it isn’t the same thing, McClellan said, she explains to younger children that just like glasses help people see, the cochlear implants help people hear.
A big decision, McClellan said, was to decide whether to teach her daughters American Sign Language, to speak or both.
“We chose listening and spoken language,” she said. “It’s definitely a personal decision.” They do not know sign language, but they are “great at reading lips.”
She stressed that members of Arkansas Hands & Voices supports whatever parents choose.
“We want to respect that choice,” McClellan said. “What works for your child is what makes the decision right.”
McClellan said she always wanted three children, and she didn’t let the older girls’ hearing loss prevent her from becoming a mother again.
“I’m thinking, ‘We can deal with hearing loss; we’ve got this down.’ And surely not three times. I am thinking, ‘What are the chances it will be three? And again, she passed her newborn hearing test,” she said of Sophie.
She had Sophie’s hearing tested periodically, and the children underwent genetic testing again.
“The result showed a mutation on Keely and Abby’s test results that Sophie did not have. At that point, I felt more confident that she was not going to have hearing loss,” McClellan said.
“They’re just normal girls and, to some extent, you wouldn’t know my older two had hearing loss.”
Abby and Keely sat together on a love seat in their living room; Sophie was in a chair. As McClellan described, it was impossible to detect any differences in their speech.
“All my friends say, ‘We completely forget about [the cochlear implants] when your hair is down,’” Keely said.
She credits their mother with taking them to speech therapy “all the time.”
Sophie said the only negative about her sisters having cochlear implants “is they get to take them off and
Abby said that was true. “Every time she’d start crying or throwing a fit, we’d take [the cochlear implants] off. Mom would say, ‘No, if I have to listen to it, you do, too,’” Abby said.
The sisters described their mother as a hard worker and a selfless person, holding down two to three jobs at a time.
“We try to be nice to her and do stuff for her, but she won’t let us,” Sophie said. “She’s too nice.”
They also praised their mother for starting Arkansas Hands & Voices. Abby and Keely said as they grew up, it helped to see other children who are deaf or those with hearing loss.
“Growing up, for me, specifically, it was kind of cool to see other kids [with cochlear implants]. Now that I’m older, Mom likes to bring me along, and it’s cool to be …,” Abby said, hesitating.
“An example?” Keely said, finishing Abby’s sentence. “Yeah,” Abby said.
“There are a whole bunch of kids [who are hard of hearing] in Arkansas, and I never would have imagined that,” Keely said.
“When they see us, they know they can just be normal kids,” Keely said.
Having hearing loss can be isolating for the individual and family, McClellan said. That’s why the Arkansas Hands & Voices has family activities, such as a trip to the zoo in April.
“One of my favorite memories from one of our early, early meetings was a little kid saying, ‘Look, Mommy, she has hearing aids like I do,’” McClellan said.
Abby said group activities help children with hearing loss realize they can be normal.
“I played soccer, and she still does,” Abby said, pointing to Keely. “I’ve had parents say, ‘I had no idea my kids could get involved.’”
McClellan said raising two deaf children hasn’t been easy.
“I love the fact they had each other. I wouldn’t trade these kids.
“Hearing loss is a low-incidence disability. … A lot of children who are deaf or hard of hearing don’t know other children who are deaf or hard of hearing,” she said.
“This experience isn’t one I would have wished, … but we’ve met some important friends.
“I just feel so strongly that all children — it shouldn’t matter where they live; it shouldn’t matter their parents’ educational level; it shouldn’t matter socioeconomic status — all children deserve access to early-intervention services.”
Sometimes physicians need to refer a child with hearing loss to an expert, she said.
“It’s just frustrating when you see, if that parent is stuck in the grieving process … you say, ‘You have to do something because your child is losing language every day,’” she said.
Her other advice is for families of children who are hard of hearing or deaf to “reach out to other families and learn from others’ experiences.” McClellan said she jokes that she has a “dysfunctionally close family.”
“I was involved in church; I have good friends. For a long time, I thought, ‘I don’t need anyone else.’ At one point, I looked at the audiologist and said, ‘I need to see another family like mine that’s further ahead.’”
A family with three daughters who are hard of hearing visited McClellan’s home, talked to her and “gave us hope and told us it was going to be OK.”
McClellan said her children are thriving and well-adjusted, but she couldn’t have done it without support. She said anyone interested in Guide By Your Side or Arkansas Hands & Voices may email her at email@example.com.
“When I meet with families one on one, I try to talk with them and confirm, ‘You are not alone; there are other parents who have walked this path ahead of you,’” she said.
McClellan is willing to take them by the hand and help them navigate the bumps.
Senior writer Tammy Keith can be reached at (501) 327-0370 or firstname.lastname@example.org.