• July 25, 2014

Labor of love: Parents build dream home for disabled sons

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Posted: Saturday, May 17, 2014 4:30 am

Andy and Jennifer Cibula spent 10 years planning and building their new home in Oakton, Va., with two objectives: to design it so that their two young disabled sons can grow up and live there with a caregiver long after they are gone. And that it not aesthetically announce that anyone disabled lived there.

When the family moves in later this spring, the $2 million, 7,000-square-foot contemporary-style residence will feature cutting-edge technology.

Joshua, 16, and David, 12, will be able to use iPads to call for Mom or to raise the blinds or to play Taylor Swift. The cabinets will be able to move up and down. Touchless faucets will compensate for dexterity issues. And the security system will alert the Cibulas if one of the boys gets up and doesn’t return to bed. Even the warm-water dog wash outdoors will be at wheelchair level for the family’s anticipated service dog.

The house will allow the boys to avoid ending up in an institution, the fate of many disabled adults.

In 1992, when Navy Lt. Andy met Jennifer, then in graduate school on the path to a teaching job, their courtship was all about dogs, the beach and Andy’s admittedly odd sense of humor. Almost presciently, it would one day help the family weather unimaginable circumstances.

In 1997, Joshua suffered a stroke in utero and was born with cerebral palsy, intellectual disabilities, seizures and muscle contractures that gave him little control over his limbs. Life for the young couple was challenged in ways neither could have foreseen.

Consumed by 24-hour care, Jennifer, who already suffered from a heart condition, lupus and rheumatoid arthritis, found her health further deteriorating. Andy, a flight-deck officer on the aircraft carrier USS Kitty Hawk, rethought his peripatetic career and became an aerospace engineering duty officer with less travel.

Search for home

Transferred to the National Reconnaissance Office in Chantilly, Va., in 1999, he and Jennifer launched an exhausting search for a handicap-accessible home. They settled in a small home in Reston, Va., though door and hallway widths were inadequate.

After the 2001 birth of a second disabled son, they needed to move: A restrictive homeowners’ association precluded renovations necessary to accommodate two wheelchair-bound children.

In 2003, the couple found a three-bedroom 1974 rambler in Oakton with walkout basement and no homeowners’ association. They planned to widen hallways, add a handicap-accessible bathroom and enlarge the kitchen. The last thing the family wanted, however, was an institutional look with obvious ramps and grab bars.

After rounds of meetings with architects who Jennifer said “didn’t really listen,” they found Bob Wilkoff of Archaeon Architects in Cabin John, Md. Wilkoff is the son of late industrial designer William L. Wilkoff, a pioneer in barrier-free design whose credits included user-friendly subway platforms for the disabled in the Washington, D.C., Metro system.

They decided to demolish the house and create a custom home that could adapt to the children’s changing needs as they grew up.

Joshua relies on his wheelchair and has use of only one hand. In addition to cerebral palsy, he has hydrocephalus (excess fluid in his brain), which requires a shunt to drain. His mother said he has been figuring out workarounds for anything he cannot do since he was 2, such as simultaneously controlling two Wii remotes with his one functioning hand.

David has acute cerebral palsy; a pump delivers medication to his spinal column to loosen overly tight muscles. Despite severe limitations, in an after-school community science program two years ago, David built a rocket that went farther than those of any of the “normal” students. “They are very bright children trapped in brains and bodies that don’t work very well,” Jennifer said.

Accommodations

Their wheelchairs can pass through the home’s 8-foot-wide entry side by side. A towering atrium draws light through the main level, which has an open-concept great room/kitchen, laundry room, four bedrooms, three bathrooms, a home office and an elevator. The boys’ bedrooms flank a common bathroom and have a track system for lifts so Joshua and David can move from bed to vanity to bathroom and so forth. The hallway is illuminated 24 hours by low-voltage LED lighting strips in the baseboards. Brazilian teak handrails reflect the teak flooring, blending in instead of announcing that disabled children live here.

“For mobility, the entire kids’ bathroom  — roll-in shower and all — is treated as a giant shower floor,” Wilkoff explained. Drains run alongside both sides of the room so the floor doesn’t need to angle down anywhere, as it would in conventional showers, and a wheelchair won’t roll away.

A 400-pound-capacity pneumatic, waterproof changing table emerges from the wall, lowers and becomes flush with the floor, making it easier for the boys to slide on top to dress in the dry. The lavatories and vanities also move up and down.

“Changing tables in this country are mostly for babies with an 80- to 100-pound limit,” Wilkoff said, noting the team had to import a lot of handicap equipment from Europe. “Over there, people are more predisposed to aging in place — in the home — which was the Cibulas’ goal for their children. . . . We wanted movable plumbing fixtures to be able to grow with them.”

The home’s lower level features a gym with ceiling tracks for stability harnesses so Joshua and David can use the equipment for physical therapy. There is a media room large enough to accommodate multiple electric wheelchairs for friends to visit, a wheelchair corral and a train room for the family’s hobby.

The lower level can be accessed through an outside door using a ramp system when the boys come off the school bus.

From the upper level, a “hybrid” elevator — essentially a small commercial elevator — conveys the family down. A residential elevator would not have been strong enough for two growing boys in wheelchairs accompanied by an adult.

Each family member can use an iPad or a touchpad on the wall to control nearly everything inside and outside the house: phones, cellphones, intercom, lighting, room temperature and humidity, music, television, movies and gaming.

A commercial security system with cameras has been integrated. Sensors will sound an alarm for leaks and floods that could short-circuit the labyrinthine wiring throughout the home.

“The family can also arm and disarm the house and check it remotely through their cellphones or iPads,” explains iHome Integration managing partner Justin Tsuchida. It can be programmed to signal the parents if someone gets up and doesn’t return to bed in a few minutes by way of an iPad alert or a chime through the home speaker system, or in the master suite as a bedside lamp flashing or a light changing color. The method of communication (sound, light, location) can be altered as the family’s needs change.

Detailed images of each room are stored on the iPads. By touching a light or blinds in a photograph, the boys can turn it on or off, raise it up or down. Their iPads enable them to touch an icon and phone their parents using FaceTime if they are at school or a friend’s house and need to be picked up.

With the boys’ entertainment preferences running to classic rock such as Queen for Joshua, and Xbox’s “Zoo Tycoon” for David, the ability to manage radio, music playlists, DVDs, video games entirely with their iPads has brought them a sense of control. In the past, maneuvering behind furniture to connect and disconnect wires was frustrating — impossible without summoning a caregiver.

“Throughout the process, we used a wheelchair as a teaching tool,” says Andy, 49, who retired from the Navy as a captain in 2012 and now works as a defense and intelligence industries consultant. Builder William Bissell would roll himself outside to get a feel for the pitch of the ramp. Or he would sit and slide the wheelchair underneath a standard kitchen table, something soon replaced by a custom-built one because the wheelchair’s armrests scraped along the underside.

Instead of chairs, a banquette was chosen, with the help of interior design firm DecorAndYouDC, “because chairs get pushed out from a kitchen table and left there as obstructions,” says Jennifer, now studying for her doctorate in psychology to work with families and caregivers of special-needs children.

The home has “thousands and thousands” of details, she adds, including furniture on casters. In the kitchen, accessible cabinets come forward and lower at the touch of a button, as do countertops. While the boys cannot currently use the kitchen, the Cibulas didn’t want to limit what they might be able to do under the right conditions.

“Like able-bodied people, they should be able to live their lives to the fullest extent possible,” Jennifer says. “I want people to understand that these are real people — not just kids in a wheelchair to pity. It bothers me most when people feel sorry for them, because we feel really lucky to have these children.”

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