If it takes a village to raise a child, it takes a community to raise a disabled one. Kathy and Dave Schierenbeck are quick to credit their family's "community" for much of the progress their son, Dan, has achieved throughout his 16 years with cerebral palsy.
From other families with disabled children to therapists and teacher aides, from social workers and engineers to school administrators and adults with cerebral palsy, the family has called on many for information, care and support.
Dan's own peers have played a part in that community too. When Dan was in kindergarten, Kathy remembers one of his classmates being so insistent on communicating with Dan that he wrote "yes" and "no" on the palm of his own hands. He'd hold up a hand after asking Dan a question, waiting patiently for a response in Dan's eye gaze.
Now that Dan is a freshman at Hudson High School and his communication challenges are increasingly complex, the community has widened as the family searches for the best possible technology which will give Dan greater independence. In November, Dan wrote a letter to Apple Computer thanking them for building a scanner into iOS 7, their new mobile operating system. He also requested they make a simple change which would improve his access. "If you improve this function, it would be more convenient. … I am excited to see what you come up with," he wrote.
He's hopeful for a response from Apple but like everything else in Dan's world, patience is required.
Dan's cerebral palsy (CP) developed at birth after he was without oxygen for precious minutes as the medical team prepared for an emergency caesarian section. "Really, it's a miracle that he's alive at all," Kathy says.
CP is an umbrella term for a group of neurological disorders that permanently affect body movement and muscle coordination but don't worsen over time. There is no known cure.
The early months were an emotional roller coaster. Doctors could offer no firm prognosis. "One doctor would say he would be a typical child and the next week a different doctor would say he'd never walk," Kathy says. "We accepted the fact that we weren't going to know for sure until he missed a milestone."
He smiled at three months and a month later laughed out loud. But normal physical development, like rolling over and sitting up, never came, despite therapy that started five weeks after birth. Dan was officially diagnosed with CP at six months of age.
From a physical standpoint, Dan's CP is considered severe, as he has no use of his arms or hands and has little head control. He is restrained in a wheelchair with a lap belt and a chest harness, because his body is constantly moving. Additionally, he is completely nonverbal.
Cognitively, though, Dan is typical. "Dan is a bright kid," says Linda Klotz, assistive technology consultant for the Hudson City Schools and a speech and language pathologist who has known Dan since kindergarten. "He's a fast learner with an incredible work ethic."
Dan's aide at the high school, Bill Richter, couldn't agree more. "He blows my mind every day," Richter says. "He's way ahead of me in geometry and he knows it. He does everything in his head first. The toughest part for him is communicating the answer to me."
Finding the best communication technology for Dan has always been the family's top priority. In preschool he got his first communication device through the Cleveland Clinic Children's Hospital Technology Resource Center. The family liked the device except it didn't allow Dan to say exactly what he was thinking. He had to use pre-programmed words and phrases. "Essentially we were putting words in his mouth," Kathy says. "We knew he had to be able to ask for things he needed without us having to guess."
The need for Dan to be able to express his own thoughts became the mantra among his second-grade support team, which included Klotz, his aide, teacher, principal and physical, speech and occupational therapists. They looked at many communication devices but eventually Dan chose the ECO, which has 144 keys and scans rows and columns made up of a mix of letters, words and pictures that Dan then chooses to form words and sentences.
"Now that he had an ECO, we told Dan that his communication rests with him. We said, 'this is your voice,'" Kathy says. "That team really put their heart and soul into Dan and that's when he started talking."
Today Dan is so adept at using the ECO, he often doesn't even need to look as it scans. It's a sophisticated piece of equipment that acts not only as Dan's voice but also as a computer for completing class assignments, doing algebra and geometry -- it has a built-in calculator -- and to play games. But the ECO is far from perfect for Dan as it is too large to use in many public spaces when it is attached to his wheelchair and scanning is slow, making word processing tedious. In a sense, Dan is outgrowing it.
One night this past fall, as she studied in her dorm room in Virginia, Kiersten, Dan's sister, received a FaceTime call on her smartphone. "It was Dan and he's smiling and laughing. I asked, 'Did you do this by yourself?'" She waited for his reply. He had reached her using his iPad but couldn't speak back to her without his ECO.
Kathy, in another part of the house, was surprised to hear her daughter's voice and came running. She quickly hooked up Dan's device so he and Kiersten could chat for a few minutes before saying goodnight.
Use of the iPad has been an exciting addition to Dan's technological world. It came about only recently with Apple's iOS 7 and its new accessible scanning feature. A vertical scan on the home screen allows Dan to single click to select the row he wants. The scan then starts left to right. A single click again on the item he wishes to select and he's surfing the web -- and placing a FaceTime call -- just like any other teenager.
Since he has no hand control, Dan does not use a mouse or a touch screen for any device, including the ECO. He "clicks" using a switch he operates with his knee. His letter to Apple asked the company to keep the menu box on the screen rather than having to double click to get it there. For a disabled person, double clicking is nearly impossible to perform using a switch.
The family hopes for the day when the amazing advances made in gaming technology and the rapidly improving features on smartphones and tablets find their way to assistive communication technology for the disabled community.
They were encouraged recently by some attention Dan received from Austen BioInnovation Institute of Akron (ABIA). Dan's use of the knee switch for so many years has caused wear and tear on his hip joint. So last year, two graduate students from ABIA shadowed Dan at the middle school noting how he uses technology during the course of his day. They're attempting to build a device that will allow Dan to manipulate a switch with his thumb, instead of his knee.
Sounds simple enough but the ramifications for Dan would be enormous -- ability to power an electric wheelchair by himself and streamline computer use.
It remains to be seen exactly what this thumb switch will look like. Dave and Kathy believe it needs to be wireless; strapped to his body, not his chair; and it probably needs to fit on his hand, like a glove.
The search for a thumb switch is the latest in a long list of services and products the family has researched in the quest to help Dan reach his full potential. Things like brain wave and eye scan technologies and word prediction software could have potential future benefits.
"We hear about so many things from so many different people. We always listen but have adopted a cautious attitude," Kathy says. "But we don't want to be too skeptical either. We never know when we'll find something that works."
Dave figures the more people they can introduce Dan to, the greater possibility it will pay off. "People don't forget about Dan once they meet him," he says. Dave's dream is to get Dan in front of someone at Google. At the top of their wish list would be integration of Google's word/phrase prediction capabilities into a communication device.
By fourth grade, the push to get Dan on task and working at grade level began. Dave and Kathy realized he wanted the challenge and was motivated to keep up with his peers. "We did so much with him at home, reading to him and working on math facts. We never stopped. Yes, he couldn't walk, but that didn't mean he couldn't do math."
His "county project" in fourth grade took the family to Green County and a visit to Wright State University known for its accessible campus and services to disabled students. "We got off the elevator in one of the buildings and we were surrounded by a lot of wheelchairs and people who looked like Dan. There was a whole community of Dans out there that we didn't know existed," she recounts.
College is in Dan's future but what that looks like in practical terms remains unclear. "It could be anything from taking on-line college courses from home to living on campus in a dorm with support," Kathy says. They've seen what's possible.
Meanwhile, high school has presented new challenges for Dan. A Bluetooth adapter connects his ECO to his laptop so he can read and listen to his textbooks online. His favorite subjects are physical science and geometry. Alane Malerick, Dan's geometry teacher, says Dan learns at an "above average rate," surprising because of the way he has to learn. "He has to take everything in visually and auditorily," she explains. She says she's amazed that he can think through the steps and come up with answers without the benefit of writing things down and manipulating what's in front of him.
Like any teenager, Dan enjoys a break from the rigors of classwork. "He's such a jokester and just enjoys being goofy sometimes," says Richter, his aide. "It's rare to have a day that we're not cracking up at some point."
"Mr. Richter is funny and he doesn't treat me like a child," Dan says. "He just gets me."
Dan's disability has unquestionably altered their lives, but it has not kept the family from taking part in all that life has to offer. Ever the optimist, Dan is game for anything.
"If there's any possible way to do it, my parents will make it happen," Kiersten says.
Dave has carried Dan down escalators; onto pontoon boats; into inaccessible subways in Manhattan; wheeled him along cobblestone streets in London and navigated Paris, an unfriendly city to the disabled.
"We could sit and feel sorry for ourselves with all we can't do, or we can go out and try," Dave says.
At home, Dan has responsibilities and chores like the rest of the family. They rely on his organizational skills for keeping track of the dog's medication schedule. And because he lives through his senses, they've come to depend on his observational skills, noticing when keys are left in the ignition -- it happened in the Disney World parking lot -- when wallets are left behind and Christmas tree lights left on. "Dan's an asset to our family in so many ways," Kathy says. "We don't focus on what he can't do but concentrate on what he can do."
When out in public, Kiersten says she's learned to live with the inevitable stares and whispers. "We don't get mad," she says. "We approach it differently. We'd rather educate people and we invite them to ask questions if they want."
"People don't think I can hear or comprehend because I am in a wheelchair and I can't speak. I think we should try to show empathy to everyone with a disability," Dan says.
Karen Weber, assistant principal at Hudson Middle School, says Dan has always had a "little fan club" around him through the years. "These kids have learned patience from Dan, and they too have learned that you never know the true potential of a human being until you take the time to get to know them."
Weber, who first met the family when they toured the district's preschool classrooms in 2001, credits Dan's own determination and the passion of his parents and sister for the success he's achieved. "Dan has dreams like any child. There are a whole slew of people around him who want him to accomplish those dreams. He has so much potential," Weber says. "I fully expect to be in contact with Dan for many years."
Klotz is similarly matter-of-fact in assessing Dan's future, a child she long ago nicknamed, "Dan the Magnificent." "I see great things on Dan's horizon," she says. "There will be challenges, but he will overcome them."
Last May, the Schierenbecks were invited to address the guests at the Cleveland Clinic Children's Hospital HeartThrob Ball, a black-tie affair at the Cleveland Public Auditorium. The event raised nearly a million dollars to support the Technology Resource Center, a place Dan has frequented since preschool, receiving speech, occupational and physical therapy there.
Dan talked to the crowd using his ECO. He credited the resource center with getting him to where he is today and ended his speech saying, "One day when I go to college, I will design software for communication devices. I realize that people with disabilities who can't speak are sad. I think I can help them."v