CINCINNATI -- As a modern parent, you expect you can get any product you need to help your child. But if that child has a disability, that's not always reality.
May We Help, a local volunteer organization, has resolved to solve this problem through over 700 outside-the-box inventions that they deliver to individuals with disabilities, and agencies who assist them, for free.
Heather Steiger, a Milford mom, had baby Jack eight years ago. He suffered hundreds of seizures daily until a surgery at 6 months old meant to resolve the problem resulted in a stroke. Jack lives today without most of the right portion of his brain, which causes behavioral and sensory issues. He enjoys swinging and rocking, but who makes infant swings that will fit an 8-year-old?
Nobody except May We Help, as it turns out.
Steiger has applied for May We Help to take on two project ideas in the last few years: a safety jacket for Jack's self-injurious behaviors and a big-kid rocker for his desire to rock and soothe. The organization, comprised of about 60 volunteers around Cincinnati, includes inventive engineers and seamstresses, as well as many other occupations. When a family or person with a disability applies, the organization works on plans and a prototype to solve the problem the person encounters.
"We have engineers, woodworkers, machinists, welders and even people who sew. While their backgrounds vary, their desire for helping our clients defy their limits and pursue passion is very much the same," Executive Director Terry McManus said.
The volunteers meet monthly to hear project proposals from clients, and spend much of their own time and resources to create adaptive solutions.
"We originally went to May We Help because we didn't have any way to keep Jack safe if my husband was at work and I needed a shower," Heather explained in this example scenario.
For Jack, the safety jacket became a reality when a volunteer used a life jacket and attached a travel pillow to protect him when he would bang on a wall or engage in other self-harming behaviors. The big kid swing concept resulted in a motorized rocking chair that was already in Heather's home, with an added safety belt. Jack uses the chair multiple times per day now, and May We Help is adding a bigger motor to the chair, which also has an on-off switch.
The organization began in 2006 after late founder Bill Wood helped a woman with cerebral palsy, who was reading books by turning pages with her mouth, to create a solution. Two other Bills, Bill Deimling and Bill Sand, helped to get the organization started and have enabled countless individuals around the Tri-State.
The mission has also expanded to a Columbus location in Grove City. May We Help's website shows the creative range of past completed projects, including a sensory chair, a modified trike, a focus desk, remote supersoakers and a paint brush rig.
One unique function of the organization is it does not simply help an individual once, but rather continues to improve the product and engage in future projects with the same families. The process of choosing to accept a project is based mainly on if there are any existing solutions available, McManus said.
"If not, we then assign it to a volunteer as a project lead who will coordinate the design-and-build phase of the project with the team he assembles for the specific abilities needed," he said. "Often it will take more than one delivery to finalize the project as we move through corrections of the prototyping process. After the final solution is delivered we ask, ‘So how else may we help?' "
Another family that has received multiple projects is Deborah Amend's family of five children from Finneytown, including her two daughters, Anna and Aly, who have disabilities. This musical family encountered a challenge when Anna, who has one arm, wanted to play trumpet when she was in elementary school. May We Help built an adaptive music stand and seat that allowed her to accomplish her musical goals.
Anna, now 18, went on to play guitar as well with an adaptive stand and seat that allows her to use her hand and foot.
Amend's other daughter, 13-year-old Aly, has been playing the cello since third grade despite range-of-motion issues that do not allow her to play in the traditional position.
Aly has a disability called AMC (arthrogyposis multiple congenita), a joint and muscle disorder that results in limited strength and range of motion for her in all four limbs. She is also a wheelchair user as a result. By reversing the strings and laying the cello out in front of her, May We Help solved the problem.
Deborah has worked with the group for 10 years and has expanded her musical passions into a partnership with May We Help to run Cincinnati Adaptive Music Camp, which she explained is "for kids with physical differences who need an adaptive way to play the instrument. We figure out how that child will play that instrument."
For Deborah's family, music is more than a passion -- it's part of who they are.
"If they weren't able to play instruments, part of who they are would never be expressed," she said. She also recognizes the social importance of music for her daughters, as they have been able to take part in band and orchestra.
Regardless of the project, May We Help's selfless volunteer mentality is impacting lives around the Tri-State.
Steiger said, "When families like me are on the receiving end of it, it feels good that others stepped in to help our family. I feel close to them. They are an extension to our family in their time and money. Incredible organization."