Living Their Best Lives

Image

Everyone wants to be happy. They want the best for themselves, their families and communities. No matter who you are, and whether you have a disability or not, creating

a space in your world that helps you thrive in your daily routine is important to your

well-being and those around you. Here are four inspirational stories of Northeast Ohioans that provide a glimpse into their lives, but also hope that no struggle is too big to overcome if you have a positive attitude and the mantra, “live your own best life.”

Helping Kids Break Barriers at iCan Bike Camp

Volunteers run alongside the kids with helmets who are pedaling away at iCan Bike Camp at the Independence Field House. The camp provides people with special needs and their families an opportunity to spend a week learning how to ride a bike.

Jarmila of Solon, proudly watches her 8-year-old son, Ian, ride on the last day of camp with a big smile on his face.

“It’s great to see him make progress,” she says of her son, adding that while she was anxious at first, she now feels they are able to tackle bike riding and can help her son continue to ride.

Robert Fellinger, an elementary school teacher and coach who has been the volunteer director for 13 years, says he got involved when he volunteered at the camp, because he just loved helping out.

“It’s such a positive experience; I wanted to help more,” he says.

The camp has room for about 40 participants, and Fellinger hopes to have about 2 to 3 volunteers per camper. He recruits volunteers such as high school students, who can earn community service hours, also college students and others in the community.

The camp is offered for one week in which kids who have special needs learn how to ride on tandem and roller bikes with the help of volunteers. The campers progress each day and by the end of the week, they can graduate to two-wheels assisted or unassisted, depending on their level.

While there is a camp fee, Fellinger says there’s support for those who are unable to pay.

iCan Bike is part of a national program, iCan Shine (icanshine.org), which has other programs such as iCan Swim and iCan Dance. The iCan Bike staff is there throughout the week helping the volunteer camp staff with the campers’ goals.

Fellinger says that from the start of the week to the end of the week, parents and volunteers can see progress, even though some parents might have been nervous at the beginning of the camp.

“The science behind it is the roller bikes are teaching kids that you are able to go side to side without falling over; gradually, they build that confidence,” he says, adding that the dedicated daily practice starts working its magic. “That’s a rite of passage for these kids. There’s so few things in a lot of their lives that they don’t have the freedoms that their typical peers would. I think it’s such a positive boost for kids; even for the ones who don’t get it by the end of the week — they still tried working on something that was challenging. It helps build confidence and shows them they can try things and get better. Try things that are uncomfortable and work toward a goal. We don’t always hit our ultimate goals, but we certainly make progress along the way.”

Visit icanshine.org or contact Robert Fellinger, director at iCanBike Camp in Cleveland at robfellinger@yahoo.com

Ms. Wheelchair of Ohio 2022 Krista Allison Wins for Herself and Advocacy Work

When Krista Allison, 41 of Berea, who works in the federal government, saw on social media the application for Ms. Wheelchair of Ohio in 2022, she decided to take a chance.

After being accepted into the contest, Allison spent a weekend in Mount Gilead, OH where she was crowned Ms. Wheelchair of Ohio of 2022.

“When he said my name, I didn’t even hear him because I was just expecting it not to be me,” she says about the moment she won. “He had to tap me and he said, ‘You’re Ms. Wheelchair of Ohio 2022.’ I started tearing up and at that moment, it was like everything that I had worked on just came to fruition.”

Ms. Wheelchair America is a national competition based in Michigan. Each year, states hold their own competitions, naming winners before a national winner is chosen. According its website, it provides an opportunity for women who are wheelchair users to educate and advocate for people with disabilities.

Allison, who lives with Charcot-Marie-Tooth disease, has type CMT4J, a rare genetic condition that impacts the nerves that control muscle movements in the feet and hands, according to the Cleveland Clinic.

Allison, now a former Ms. Wheelchair of Ohio, says that night she told herself, “I’m going to make Ohio proud and I’m going to do whatever it takes to share my platform and to talk to whoever I can.”

Her platform is community accessibility, which she chose because “accessibility affects everyone, whether they’re disabled or not.”

“I wanted to pick a platform that could reach as many people as possible,” she says, adding that she was tired of making plans to be in the community and worrying about if places were accessible to her or not. “This affects everyone’s well-being.”

Allison used the opportunity to begin meeting with communities and their leaders to talk about accessibility.

She says she talked to about 30 mayors around Ohio, joined city mom groups on social media, and spoke at different organizations, hospitals, school districts and youth forums about accessibility measures. She also has given feedback on how to implement strategies.

Allison also organized a few fundraisers for organizations in which she had a special interest, for example, A Special Wish of Northeast Ohio, which grants wishes for children who are battling life-threatening illnesses.

As someone in law enforcement, she also wanted to help people with special needs and wheelchair users better connect with emergency services when in need. She has helped implement a Residential Disability form in 25 cities that provides information about the person living in a home, so the proper resources are dispatched if that person needs special assistance.

“My goal is to have the entire state of Ohio utilizing it,” she says. “It’s an in-depth and voluntary form that goes out to any of the community members.”

While Allison’s reign is over, she still plans to spread the word and keep the conversation going.

“I just want to continue talking to whoever will want to talk to me,” she says. “I think the biggest advice I could give — and I say it every time I talk — is that people have to realize we all have a voice. You just need to use it. I just really want people to get educated to understand that not everybody is the same, that everybody deals with something, whether it’s visible or not visible. People should start thinking outside of the box and realize that we’re all different, but we all deserve to be treated the same.”

Brandon Johnson is Living His Best Life as a Young Adult

Brandon Johnson, 22, has a few specialties at Munch Simple Kitchen, a Solon restaurant owned by Jamie and Scott Hersch (munchasimplekitchen.com),

His mom, Tanya Johnson, says Brandon was at Giant Eagle at Legacy Village for two years before going to Munch.

“Brandon wanted to learn how to cook and work in a restaurant,” she says.

“I’m having fun,” Brandon says about working at Munch. “I like to cook, it’s fun to cook.”

Scott Hersch says that since Brandon started making pita chips, it has become a favorite. In addition, his famous “Brandon’s Lemonade” has been a staple at the restaurant ever since he volunteered to make it.

“Brandon is the lemonade king,” Tanya Johnson says. “I mean, he makes our lemonade at home. He will not let me make it. So he’s not shy by letting you know what he likes to do. And I’m glad that he spoke up for himself and let them know that he knows how to make good lemonade.”

Not only does he make the pita chips and the lemonade, but Brandon says he also cleans the tables and chairs.

Tanya Johnson says Heidi Solomon, from Horvitz YouthAbility at Jewish Family Service Association of Cleveland, helped connect Brandon with Munch. YouthAbililty has worked with the Hersches to employ other people with disabilities. YouthAbililty works with young people with disabilities to provide volunteer and vocational opportunities, as well as social enrichment.

Brandon, who has autism, has been working at Munch for about a year, and the Hersches are happy to have him.

“To have people like Jamie and Scott who are employing people like Brandon — and he’s doing great work for them — is great because some employers might not know what a great opportunity it is to have someone like him work for them,” Tanya Johnson says.

Jamie Hersch notes how Brandon works hard and provides more than his work in the restaurant, but has shown others what people with disabilities can do.

She says having him working there has taught them and their customers about this community.

“He really loves it there,” Tanya Johnson says. “So I’m grateful to Jamie and Scott for giving him that chance and I’m glad that it worked out for him.”

She adds, “We’ve been blessed that we found a lot of programs through our county support administrator. It’s just a matter of asking and, if you get a door shut on you, to ask someone else. It can be hard to find, but they’re out there.”

When Brandon isn’t working, his mom says he’s busy with video games, YouthAbility’s singing engagements and trips, going to summer camp, and art and karaoke,

“He is living his best life.” she says, adding Brandon recently entered the dating scene and he’s on an app called  Connect to One (connectcle.org), which is for people with special needs looking for friendships and dating relationships.

She advises other parents not to stand in the way of them growing up.

“They’ve got to grow up and we have to accept that they’re going to become adults, so we can’t baby them,” she says.” We’ve got to push the envelope as parents to give them every opportunity possible, because they learn differently — but it doesn’t mean they can’t learn. You really have to prepare them for being in the real world. They’re going to experience things just like everybody else; they’re going to experience disappointments and let downs. What may work for your child may not work for somebody else’s, and vice versa, so you have to learn what makes your child tick while putting expectations in place and making sure that they understand.”Raising a Child with Autism to Be Their Best Self

Four-and-half-year-old Mattea runs from one piece of play equipment to the next at We Rock the Spectrum in Mayfield, an indoor playground that provides opportunities for children with special needs to have a safe place to be themselves. Her mom, Marie Burke of Kent, watches Mattea jump on the trampoline, something that she enjoys.

Burke says that Mattea’s autism diagnosis at age 3 was scary as she started the process of getting information on school and therapies.

“We have to accept things as best as we can for her to bring out her capabilities,” Burke says, adding that the biggest difference has been putting her in school at Thrive Early Learning Center in Warrensville Heights.

“She gets so many therapies, and lessons, which are incorporated into everything they do. We’ve seen a huge difference in her,” Burke says, adding that she’s always read to her children, including her 12-year-old daughter who has ADHD, and also does ABCmouse.

The one thing she would like to do more with Mattea, as she was excited to recently discover We Rock the Spectrum, is to provide opportunities for her daughter to get involved in the community.

“I would love to get her into some activities with other kids outside of school.” Burke says. “Right now, we’ve talked about dance class, but we have yet to find one. She loves to dance and that’s something I want to get her in right now. I’d love to get her riding a bike and just doing some of the milestone things that neurotypical kids do. I would love to go on a vacation with her. The big vacation that I want to do with her is Disney — and they do a lot of accommodations for many disabilities, but definitely for autism.”

Like any parent, she has been working at finding resources for her daughter and dealing with different challenges related to Mattea’s autism diagnosis, whether it’s a transition, meltdown, or stressing about the various to-do lists of therapies and routines.

Burke says she has been meeting and talking to people and has realized that there are many parents of kids who have autism. While they are sharing resources, it can be a struggle as a working mother to devote enough time to finding things.

“I hope that nobody would ever feel ashamed, but I think it’s okay to talk to as many people as you can, because that’s how I have found all these (resources),” Burke says. The more you talk to people, the more you find out. I think the other piece of advice is for people to not be afraid to ask for things, like at a doctor’s appointment; ask as many questions as you can for the things that you need, because you are their advocate.”

While her family is just starting the process, Burke is learning along the way how to navigate having a child with autism.

“Whatever Mattea’s capability is, I hope it comes through, which we’re seeing already,” she says. “I love her energy and I think that she could be enthusiastic about most things. I just want her to be her best self.”