Accessible Room Tour
For disabled children with motor impairment
When Rudy was first diagnosed with LAMA2 Muscular Dystrophy, we knew that adaptations were going to be necessary to make his living environment optimal and accessible to him. Still, we didn’t want to sacrifice the beauty and charm of his bedroom.
Over the past six months, we have made his room fully functional and accessible for him. We would love to share some of the fantastic adaptations and products that have truly enriched his daily life.
The SureHands ceiling lift has been a game-changer in how we approach daily transfers. This remarkable tool allows us to safely and effortlessly move our child from bed to the bathroom and other areas of the house, greatly reducing the physical strain on us caregivers. As he grows, manual transfers will naturally become more challenging, which can pose risks for both Rudy and us. This lift will allow us to preserve our energy and make transitions safer, more comfortable, and dignified for everyone involved. Another very cool and useful feature is the walking harness. It not only assists with transfers but also allows us to engage in standing, weight-bearing, and walking activities in a safe environment, giving our child the opportunity to practice movement in his own bedroom.
We knew that sleeping would become more of a challenge as his disease progresses and muscle weakness impacts his comfort and breathing. An adjustable bed allows us to change positions throughout the night and day, addressing those progressive muscle challenges. By elevating the head or legs, we can significantly enhance comfort and respiratory support. The BedJet Power Layer is an ultra-thin (1.75 inches thick) adjustable bed frame that fits seamlessly between any standard mattress and an existing bed frame, allowing us to put a standard twin XL bed in the room rather than a hospital bed.
Children need to see themselves reflected in the stories, movies, and art around them. This representation conveys a powerful message: people with disabilities belong. For our child, encountering characters who use wheelchairs or adaptive equipment positively reinforces his identity. This exposure also benefits siblings, classmates, and visitors by normalizing disability and fostering acceptance and understanding. Many of our most engaging conversations about disability come from a book or artwork that resonated with our experiences.
The SAMi-3 movement monitor brings peace of mind during the night. For many children with complex medical needs, nighttime can be anxiety-provoking. This monitor detects atypical patterns and alerts us when something seems off. While no device can ever replace direct supervision or professional medical care, this technology allows us to feel a little more at ease, knowing we have an extra layer of safety monitoring our child overnight.
Navigating multi-story homes can be daunting for families with accessibility needs. For us, the Stiltz Trio home lift has been transformative! It enables our child to move independently between different levels of the house, ensuring he can access every room. Rather than limiting activities to one floor, the lift fosters his continued participation in family life throughout our entire home. As mobility needs evolve, innovative solutions like this empower families to stay in the homes they love.
Sleep safety is a concern that often goes unrecognized until mobility challenges arise. Traditional bed rails weren'tweren't an ideal fit for us because if our child's hand or arm went through the railing, he couldn't remove it independently. Hiccapop bed bumpers create a gentle boundary that helps prevent falls without compromising comfort. This simple yet effective solution has significantly reduced nighttime anxiety, making it easier for everyone to enjoy more peaceful sleep.
We were thrilled to find these 3D-printed light switch extenders from a maker on Etsy and customized them to be accessible from a wheelchair. What seems like a minor tweak has opened up a new realm of independence. Now our child can easily turn lights on and off without needing assistance. Independence often blossoms through a myriad of small opportunities for choice and control over one's environment.
Flooring can be a significant consideration, especially for wheelchair users. Traditional high-pile rugs can create friction for wheels, increase the risk of catching or tipping, and are often difficult to keep clean in high-traffic areas. We chose Ruggable washable rugs because they offer a low-profile, secure surface that is much easier to navigate with a wheelchair. The all-in-one system keeps the rug anchored in place, helping reduce shifting or bunching during daily movement throughout our home.
One of the biggest practical benefits for us has been maintenance. Wheelchair tires naturally bring in dirt, dust, and outdoor debris, and cleaning traditional rugs can quickly become overwhelming. With Ruggable, we can wash it in a standard machine, which keeps the space cleaner and more manageable without sacrificing comfort or style.
One of our favorite accessibility projects has been creating an independent handwashing station using a Mighty Sink. This portable sink is fully rechargeable, requires no plumbing, and holds up to two gallons of water, making it incredibly versatile for families who need accessible solutions without a major renovation. We built ours using a repurposed outdoor kitchen and a few 2x4s, customizing the height so he could reach it comfortably from his wheelchair. Having a sink he can reach and use on his own allows our child to practice daily self-care skills like handwashing and toothbrushing without relying on an adult for every step. These routines provide opportunities to build confidence, develop motor skills, and experience the pride that comes from doing things independently.
