Dazzler gives family gift of ‘experiencing a normal life’
While he cannot speak volumes, he does like to write… words, schedules, to-do lists, and his name.
Amidst the commotion, Ethan leans into the wall at the front of the classroom. With a black Sharpie in-hand, he begins to sign the 4 Paws Graduates banner with his name, his dog’s name, his mom, his dad, his grandparents—all who are in his presence to congratulate his and Dazzler’s success today.
The brown-haired, 7-year-old boy with thick, black, square-framed glasses, who recently celebrated his birthday, is now about to graduate from 4 Paws for Ability with his newfound best friend, Dazzler.
He is among a class full of superheroes donning capes complete with “Super” insignias… it’s the ‘Summer of Superheroes’ August class. And Ethan… he is a wonder boy, curious about people and places, and Dazzler is his superhero.
Uninterested in the hoopla that surrounds him, Ethan now sits in the play area where there are puzzles, games, toys, building blocks, coloring books and trampolines. But he wants no part of those. He calmly and quietly sits on a wooden chair, mind focused, untangling a slew of black wires attached to electronics from the cabinet. His tiny fingers work their magic… and voilà! Cords detangled.
Long road to ‘normal’—
Born Aug. 17, 2005, Ethan was just 4 lbs., full-term. His mom, Heather, says that he failed his newborn hearing screening and was diagnosed with cytomegalovirus, or CMV, which can lead to deafness, blindness, ADHD and cerebral palsy. As a result, he had profound bilateral hearing loss.
At 13 months old, Ethan received his first cochlear implant, receiving his second just a year later—allowing him to finally hear the world around him—his vision, still impaired.
The glasses that he so often pushes up on his tiny nose during class have been a part of his appearance since infancy. But his parents were optimistic and moving forward. In fact, Heather says, it seemed like her baby would walk and talk, however, his progress was seemingly slow.
He was later diagnosed with apraxia of speech—which is rare and unusual in cases where the child has cochlear implant. He could hear some, but could not speak.
Therefore, when Ethan was 3 years old, Heather, a teacher, and Richard, a self-employed IT trainer, looked to where they could receive the best care for their son. They moved from Athens, Ohio, to Cincinnati, where Cincinnati Children’s Hospital is located, as well as St. Rita School for the Deaf.
As they started to settle into their West Chester home, a Cincinnati suburb, Heather knew there was something more that her son was struggling with. A year later, Ethan was diagnosed with autism. Because of his CMV as an infant, it was confused with severe ADHD, she says.
St. Rita was not equipped to handle autism. Therefore his parents moved him into the Lakota School District near their home, where Heather says, he “loves school.
She has since left her teaching career for the time being to take care of Ethan and make sure he gets to his numerous appointments.
“I’m president of Ethan’s world.”
Sheer panic leads to turning point—
While meeting with some folks at St. Rita, someone told Heather about 4 Paws for Ability and how an assistance dog might be able to help serve as a hearing ear dog, as well as assist Ethan with his autism.
She says that she immediately thought, “That’s what we need!”
Heather immediately called 4 Paws. She was instructed on fundraising $13,000 on behalf of 4 Paws, but says it wasn’t something that she felt they could do at the time.
“Fundraising was overwhelming—we had no local connections, no community [yet].”
So she says, they put it off… thinking ‘maybe in a year.’ That year would come drastically quicker and much more dramatically than she ever imagined.
Heather was diagnosed with breast cancer in July 2011. She had to undergo a double-mastectomy and reconstructive surgery. (She is now cancer-free.)
Later the next month recovering, she was standing in the front yard with Ethan, who she calls a “runner.” She turned her back for less than 30 seconds and he was gone, down the street, climbing inside a brown UPS truck. She bolted and retrieved her son from the delivery truck, thankful he was OK, but knew he could just have easily not been OK.
“[It] could’ve been really bad,” she says, remembering how frantically she scanned the neighborhood and street until her eyes locked onto her son; seeing him in what could have been a very dangerous situation.
Several scenarios raced through the young mother’s head.
“What if he fell?”
“What if the driver drove off with him?”
The possibilities of a tragic ending seemed endless.
While he can hear to a degree, Ethan wouldn’t be able to answer questions that most children could in that sort of situation.
“Autism makes it hard for him to make sense of his world,” says Heather.
Questions like, “Who are you?” “Where do you live?” would be lost on Ethan.
It was in that singular moment in time that she froze in thought, realizing, knowing, “We need something to keep him safe.”
Finding the 4-pawed best friend they needed—
Heather hit the computer. She furiously typed just as quickly as her fingers could pound the keys, researching everything she could about a multiservice dog at 4 Paws. It was everything that she was looking for and been hoping for. She couldn’t believe that something so ideal was right in her own back yard—about an hour’s drive from their West Chester home.
“[It was] perfect. We’ll get a dog to help with all these issues… this was meant to be,” she says she remembers thinking. It wasn’t an either-or service dog, assisting in one disability or another, but rather, all in one.
“We needed that combo.”
That’s when Heather called 4 Paws ready to get started on fundraising or whatever she had to do to ensure her son’s safety. To her surprise, 4 Paws had a scholarship opportunity for Ethan, due to his hearing disability.
The Erma A. Bantz Foundation Scholarship covered the entire fundraising requirement to 4 Paws, putting Ethan on the list for a trained multipurpose service dog.
Bantz lived in Cincinnati for 95 years. As a child and through most of her adult life, Erma suffered from severe hearing loss. Later in life, she fought eye problems, which diminished her sight. The Erma A. Bantz Foundation was established after Erma’s death to carry out her desire to improve the lives of people who suffer hearing or visual impairments.
“My expectations would be that we’d get a ‘Super Dog’ and we did,” says Heather.
Dazzler, an 11-month-old, chocolate Labrador Retriever, was part of our Mission PawsibleTM program, trained at London Correctional, along with a semester at Miami University in Oxford, Ohio, in the 4 Paws Campus Program.
As a multipurpose assistance dog, Dazzler will primarily be Ethan’s hearing ear dog— alerting him to sounds like smoke alarms, his name and car horns. With 4 Paws’ expertise in treating children with multiple disabilities, Dazzler will also provide further life-saving capabilities to assist with Ethan’s autism—tasks like tethering, tracking and disrupt behavioral meltdowns due to Ethan’s autism—comforting him when he’s distressed, which Heathers says can be several times a day. Tools that Heather thinks will be a relief to their entire family.
“A lot of worry has been lifted,” says Heather. “[It’s] tremendous.”
It was time for best friends to meet.
Well, it wasn’t love at first sight. The first day of class, they met; however, Ethan was not interested in the brown dog, eagerly awaiting a pat on the head or a “good girl!” from her new boy.
Heather remembers the first three or four days of class, Ethan was petrified of Dazzler. However, by Day 11, the last day of class, they were sleeping in the same bed and enjoying each other’s company; working together.
Once a boy who barely spoke, wakes up in the morning and the first thing he says is “Feed Dazzler.”
“It’s incredible. He told her to sit, then go outside and go potty,” says Heather beaming with enthusiasm and pride.
Freedom with tethering & tracking—
Dazzler, in addition to being his hearing ear dog, is trained to track Ethan if ever he wanders off or runs. She will be able to find him—potentially saving his life, like so many other tracking service dogs have done in the past for children with autism.
When in public, Dazzler will be tethered to Ethan, leaving no chance of him running off or drifting from his family while shopping.
Going to the store or grocery has always been a planned event and not always the most enjoyable time spent with her son, says Heather. Because he’s a “runner” and will dart off when he gets the chance, she has to keep a hold of him at all times. Leaving him with no independence and leaving her without the ability to communicate with her son via sign language—his language.
“Holding him tight means he’s being oppressed and doesn’t know what’s going on—it’s layers of frustration [for him],” she says. He is “a prisoner to his condition.”
Dazzler, seemingly Ethan’s get-out-of-jail-free-card, will be tethered to the young boy, giving him the freedom that his mother has yearned for, for Ethan his entire life.
A few days ago, she says, while at home, the family walked down the sidewalk on their street for the first time EVER. Ethan tethered to Dazzler. Mom and dad elated.
“It’s really emotional. He’s never experienced freedom like that,” says Heather. “It’s cool to see him walking freely like a normal kid. He’s confident and happy.”
It’s a release of emotion for Heather, who says they can finally go out and not worry that her son will run off and they may never see him again.
“We have felt like prisoners in our own home. It’s hard to experience a normal life like going to the grocery store,” the zoo, aquarium, or even the park.
“As a parent, you dream of all the things you can do with your child—but we couldn’t. Dreams are dampened, stolen when [your] child has autism.”
But now, Heather sees a light at the end of a very long, treacherous tunnel, where normalcy for her family will reign. Normal. In seven years they’ve never ventured out to normal. Going to a parade. Going to an amusement park. Normal… all with their son in tow and Dazzler by his side. “[We] never felt safe enough… now we do.”
“Dazzler is giving us the gift of experiencing a normal life.”
Read Ethan’s story from the beginning: http://ethan-charles.blogspot.com/.
-Article and photography by Jessica Noll