My husband Marty and I had been told since Craig was in nursery school and Steven was in kindergarten that our sons had Becker muscular dystrophy. We couldn’t see it. They were running around and playing just like every other kid on the block. To us, it wasn’t real.
Something that was all too real back in 1966 was the diminishing space in our apartment. The bigger the boys got, the smaller their room became. Even with Steven and Craig in bunk beds and Glenn in a junior bed, it was cramped in their room. It was time to move out of our apartment and into a house.
The house we could afford was a townhouse with the living room, dining room and kitchen on the ground floor, and bedrooms on the second floor. It was fine for the first few years, but when Steven was 16, he began having trouble keeping his balance and problems with walking. The day I found him crawling up the stairs to his bedroom, I had to admit that our townhouse was no longer working for us.
Marty looked into a stair-lift elevator, thinking that we would keep one wheelchair at the top of the steps and one at the bottom for him to use. It could have made the townhouse work for us for another few years, but deep down inside I knew that this was only the beginning of Steven’s illness and we should be looking for a house where his bedroom was on the ground floor.
Planning ahead for the time when Craig would join Steven in a wheelchair, we went floor-plan shopping for a home that would make life easier. Ranch-style houses where all the rooms were on the ground floor were either too small for the five of us or were priced completely out of our budget.
My realtor suggested we look at split-level homes where we would be able to renovate the ground floor space to work with the boys’ wheelchairs.
“There's a split level for sale down the street from my house that you should consider,” my realtor told me. “It's a mess and will take a lot of work to fix it up, but it has a bedroom, bath, and family room on the ground floor – the basics are there for it to work for you and the boys.
“Consider this. It’s in your price range,” he said. “Second, the ground floor space is big enough for both boys when Craig needs to be in a wheelchair, and third, the plumbing for the bath is already there – that’ll save a ton on your contractor’s bill. The sellers are even willing to wait for your townhouse to sell.”
He took me to see it, and he was right. It was a mess. He was also right about the floor plan. It would definitely work for us. The whole place needed a thorough cleaning and painting, and the wallpaper was a disaster, but that we could take care of.
We took Marty to see it and, with his usual upbeat approach, he remarked about the “smoked-glass mirror” in the entranceway. The realtor and I exchanged glances and kept our mouths shut. It was a plain old mirror that hadn’t been cleaned in so long that it looked for all the world like smoked glass.
I could almost see the wheels turning as Marty went through the house, talking his way through the renovations we would make as we walked from room to room.
On the ground floor, he decided we would enclose part of the family room, rip out the wall between the bedroom and the bathroom and make one big room with an accessible bath.
We signed a contract to buy the house.
|Ground floor of the split level house|
During the renovation process, our contractor gutted the bath, enclosed an entertainment alcove that had been part of the family room, and made a room the size of a third bedroom for Steven’s bath. It was large enough so that a couple of years later, when Craig went into a wheelchair, both of them would be able to maneuver their wheelchairs so they could wash up at the same time.
The contractor, anticipating that they would need leg room at their sink, installed a countertop and centered the sink so their wheelchairs could both fit underneath at the same time, one on each side of its pipes.
I’m getting a little ahead of myself here, because before he could proceed with the renovations, our contractor had to take a jackhammer to the slab so he could move the bathtub when he took out a wall. His crew hauled out chunks of concrete, the old tub, sink and commode. His plumber relocated the bathtub plumbing and installed the new larger-size bathtub against the new wall. The bottom floor of the house was torn up for weeks.
To install the special lift needed to get the boys in and out of the tub, the contractor dug a hole in the ground, inserted the mounting sleeve and then anchored it in concrete. The mounting sleeve for the lift was now part of the bathroom floor.
We gave thanks daily for that lift. Steven was 16 and Craig was 14 when we moved into our new home. And as they got older and heavier, the lift was the only way we could get them in and out of the tub.
In the process of pouring the new slab, the contractor got rid of the old-fashioned raised thresholds and made the thresholds between rooms flat, giving the boys a smooth ride everywhere they went on the ground floor – even at the front door and the sliders to the patio.
Having watched Steven tool around in his wheelchair, our contractor decided to make all the doors extra wide and utilized pocket doors to give him better clearance.
He applied the same thinking to the rest of the downstairs, creating wide straight-aways and eliminating sharp turns, which are difficult and require a lot of wheelchair backing, turning, and maneuvering. It was a straight shot for Steven and Craig from their bedroom into their bath, another from their room to the family room and, once they were in the family room, still another straight shot to the outside.
The contractor installed another lift poolside to help us get them in and out of our above-ground pool.
|The Cotler family and "Marty's ramp." Rear row, from left: Glenn, Carole and Marty. Front row, from left: Steven and Craig.|
The patio was where Marty built his ramp. Marty’s ramp went from the patio off the back of the family room to the level with the kitchen, dining room, living room and huge screened porch. That big screened porch over the garage was where aunts, uncles, cousins, sisters and brothers came to celebrate holidays and special occasions. Steven and Craig could wheel up the ramp whenever they felt like it.
Before you get the wrong idea, we weren’t Mr. & Mrs. Got-rocks. We paid for this with a home improvement loan and years of payments.
Thanks to the efforts of MDA, Easter Seals and other organizations that dedicate their efforts to making life easier for Americans with special needs, the Americans with Disabilities Act was passed in 1990. Now federal funds are available to pay for, or help pay for, alterations like ramps, specially equipped baths and other improvements our contractor made to our house.
Through the years, these organizations have provided aid and equipment and research that eased and extended our sons’ lives, and our Medicaid caseworkers have pointed us in the right direction to get other help we needed.
Because of all these efforts, Marty and I could give our sons full, happy lives at home for over for 40 years, and we thank them all.
Carole S. Cotler and Linda F. Collins, both of Sarasota, Fla., founded and operate Special Needs Home Consultants (www.SpecialNeedsHomeConsultants.org or 800-517-5118), which offers help and support on disability issues and the needs of family caregivers. Cotler has been a home health professional for 20 years. Collins, a writer and award-winning poet, is a licensed real estate broker who specializes in finding accessible homes. The pair have coauthored several Web articles, and are finishing up a book, When Every Day is a Miracle (www.WhenEveryDayIsAMiracle.com). They can be e-mailed at firstname.lastname@example.org.