bloom at Daffodil Hill in Lakeview Cemetery in Cleveland. — Photography by Kim Stahnke
DEPARTMENTS
8 A HOUSE OF THEIR OWN Communities and organizations are creating housing opportunities for people with special needs.
20 INCLUSIVE COMMUNITY
Sherry Noll and Kaleb Lloyd share experiences about their growth through the different challenges they’ve faced.
22
WIELDING YOUR EXPERTISE IN YOUR CHILD’S CARE DECISIONS
James Sulzer discusses his family’s experience after a tragic accident with his four-year-old daughter Liviana in making care decisions.
24
EXERCISE YOUR RIGHT TO VOTE
Each year, voters are tasked with the responsibility to cast their ballots. We discuss how people with disabilities and their families can navigate the process.
47 DIRECTORY OF RESOURCES
Find these advertiser listings of resources, support and more!
MAKING MUSIC AND ART TOGETHER
These community groups bring people together to provide inclusion, learning and fun through arts, music, theater, comedy and more!
31
SOLO CAREGIVING
Whether you are caring for a child or an adult, solo caregivers struggle with burnout and more. We discuss tools, but also reassure these caregivers they aren’t alone.
34
6 SENSORY FRIENDLY PLACES IN OHIO
Go to these local attractions that offer interactive, hands-on experience for all ages and abilities. Also, look to pg. 36 for even more options.
46
WHEN THE ‘WHY’ IS ANSWERED
Getting to a final diagnosis can be difficult; Scott Gohn and Elaine Eisner talk about their journey to getting a diagnosis after years of searching.
50
COMMUNITY VOICES
Poet, Deanna C. Dilley talks to us about the importance of this artistic expression.
EXECUTIVE DIRECTOR AND PUBLISHER CONVERSATION
4 Talking about the 10th Anniversary of Livespecial.com magazine
WORTH NOTING
6 Helping kids see their inner superhero, adaptive shoe choices, communication tools.
PEOPLE TO KNOW
42 Meet individuals, organizations and companies that strive to provide support for those with special needs.
EDUCATION
10 The arts and early childhood.
11 Making a plan for school transitions.
38 Inclusive education for preschoolers.
40 Options for college-bound students.
41 Alternative education for children with complex needs.
HEALTH
12
Empowering community through fitness.
THERAPIES
16 Intensive therapy to help kids achieve potential.
17 Giving voices to non-speaking children.
ADVOCACY
14 Latino families can face additional challenges after autism diagnosis.
39 Making the family connection with a child’s diagnosis.
PLANNING
18 The process of special needs estate planning.
ON THE COVER: Sherry Noll, James Sulzer with his daughter Livie and Kaleb Lloyd, enjoying the full
MINDI AXNER Executive Director
10 Years of Livespecial.com Magazine!
This year, Livespecial.com annual print and digital magazine celebrates 10 years of publishing in the community. The magazine project is a collaboration between NCJW/ Cleveland and Mitchell Media, LLC, publisher of Northeast Ohio Parent and Northeast Ohio Boomer magazines.
We talked to Mindi Axner, executive director of NCJW/ Cleveland, and Brad Mitchell, publisher of Mitchell Media, about a decade of the magazine and its impact in the community.
Why did you expand Livespecial.com into an annual print magazine?
BRAD MITCHELL Publisher
MINDI: “We thought it would be a good way to get our resource guide out into the Northeast Ohio community. It was meant to be a one-time issue, but the response from readers was so overwhelming that we decided to print a new one annually. We had no idea how important — not just the database, but the educational content — would end up being to the community.”
BRAD: “I have always felt that targeted magazines are the best communication method to engage an audience. Mindi Axner and I got our heads together and sensed a need for Livespecial.com to expand from a website to a magazine targeted to the special needs community to allow for greater amplification of the mission.”
Over the past 10 years, what connections has the magazine made in the community?
MINDI: “So many. We get calls and emails from individuals with special needs, their caregivers, doctors, therapists and so many more professionals. Without Livespecial, many of our readers would not know what resources and supports were available within and outside of our community.”
BRAD: “Countless! We hear stories all the time of readers who are so grateful for the magazine’s content and for the advertiser solutions showcased. Pointing people back to Livespecial.com provides them with the full depth of provider solutions 24/7.”
Why do you think the Livespecial.com annual magazine is important to the community it serves?
MINDI: “It’s regarded as the most reliable, up-to-date guide to resources in the community. But it’s not just the database that’s important — it’s the articles and tips that are published in the magazine every year that provide helpful advice on living your best life. Things like what recreational activities provide special accommodations or times for children with special needs. Or how to make the most out of a planned trip. And information on your child’s legal dos and don’ts. It has become a bible for so many.”
BRAD: “It allows for connectivity between providers and the affected population in a way that is informative and encouraging. It provides resources and inspiration to thousands of families seeking solutions.”
Why is this project important not only to the community, but also to NCJW/ Cleveland and Northeast Ohio Parent and Boomer?
MINDI: “I think this project has really opened people’s eyes to the special needs world. Not all disabilities are visible — and through this project, readers have come to understand that at any moment they, too, could face a barrier and need support. For instance, whether they broke a leg or are recovering from an operation. This project has highlighted our interconnectedness and mutual need for compassion.”
BRAD: “For Northeast Ohio Parent and Boomer magazines, it highlights the importance of the special needs community to our readers and advertisers as a yearlong commitment.”
We hope you enjoy our 10th edition Livespecial.com Magazine! Visit livespecial.com to view past issues!
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PRESIDENT Marcy Schwartz president@ncjwcleveland.org
Lindsey Geiss, Cindy Glazer, Joel Hammond, Ginny McCabe, Jeannie Fleming-Gifford and Erin Sernoffsky
Livespecial.com Magazine is published by Northeast Ohio Parent Magazine and Mitchell Media LLC PO Box 1088 Hudson, OH 44236 330-822-4011
Copyright 2024 by NCJW/CLE and Northeast Ohio Parent A
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Email info@Livespecial.com to receive firsthand information and updates or to receive additional magazines. Scan or visit livespecial.com We Are Committed to Being Northeast Ohio’s Go-To Online Resource to Support Individuals With Special Needs and Their Families.
Kids Can See Their Inner
Superhero
By Angela Gartner
Nikki Montgomery, strategy and communications director for Family Voices National, says that her son Richie, 12, has had an alter ego since age 6. “Electric Force” is a superhero who has a magic hammer that shoots out smiley face stickers to make people happy.
The alter ego for Richie — who has RYR-1 congenital fiber-type disproportion myopathy, a rare genetic condition that impacts the muscles — was created courtesy of The Superhero Project. It provides opportunities for children and teens with disabilities or those children who are critically ill to see themselves in a way beyond their diagnosis and find their inner superhero.
“It allows families to focus on the positives and strengths in their child,”
Nikki Montgomery says, adding that the drawing gets to highlight the reason Richie is special and her son gets to see his own strengths.
The project, created by Founder and Executive Director Lisa Kollins, started as a one-time camp program in 2016 and now has served more than 1,600 kids. While most kids are in Ohio, Kollins says they’ve served 47 U.S. states, including Puerto Rico and Guam, eight Canadian provinces and 25
countries total.
None of the superheroes are alike. Each child and family is interviewed individually so The Superhero Project can get to know their personality and what the child wants in their alter ego.
“I have met families at their homes, at libraries, and at coffee shops, and conducted virtual interviews, where we go through a series of questions,”
Kollins says. “The first half is focused on the whole child. We work with families no matter a child’s ability. So if they are nonverbal, use a communication device or sign language, we do our best to be inclusive of everyone. We’ve even used
translators several times. The second half (of the interview) is when we find out how they want to help the world.”
After the interview is over, the task of designing a poster is done through various volunteer artists.
“All of that information, along with photos of the kids, is sent to a member of our League of Extraordinary Artists, which is what we call our global team of volunteers,” Kollins says. “So far we’ve worked with somewhere between
Richie, 12, alter ego since age 6 “Electric Force" by artist Josh Thompson
"Warrior Gal" designed by Ray Suda
"Courageous Cass" designed by Taryn Cozzy
"Lightning Boy" designed by Geoff Wagner
"Super Charlie" designed by Melissa Cho
650 and 700 artists from six continents, a bunch of countries. We’re only missing Antarctica. So, if you happen to know someone in Antarctica.”
She says posters are donated by four printing companies and the families receive a short character story based on the child’s ideas, along with a note and bio from the artist. The project is free for all families. It has also created memorial posters for children who have passed away.
“The meaning and the impact of participating in The Superhero Project that parents share with us is amazing,” Kollins says. “When (the children) see themselves depicted so beautifully and powerfully, and they see the stuff that they love included by the artist, it really makes a difference.”
She adds that parents use this as a tool for selfconfidence, too.
“Parents also say that their superheroes foster resilience, because it becomes a practical tool that they can use when their child’s facing a challenge,” she says. “They can say, ‘Now, what would your superhero do in this moment?’ or ‘Which of your superpowers are you going to call on to make it through this test or this challenge or past this obstacle?’”
The project also has made an impact on Kollins' life since creating it. She now is working full-time at the nonprofit.
“It’s the most meaningful work I have ever done, both personally and professionally,” she says. "These families invite me into their lives for a short time to walk along for what is sometimes the most difficult part of their journeys. And I don’t take that trust lightly.”
superheroprojectkids.org
ADAPTIVE SHOES
Many companies are providing adaptive fashion for people with special needs. Here are some of the shoe companies offering slip-on, accessible footwear.
STEVE MADDEN
Easy-to-grip zippers, elastic gores, and simple hook-andloop closures so they’re easy for your child to put on and remove. They also have removable sock linings to give feet a little extra space. stevemadden.com
ZEBA
“Collapsible hands-free” shoe heel-technology that allows users to put on their shoes effortlessly, without bending down. For men or women. zebashoes.com
NIKE GO FLYEASE
This hands-free shoe features a bi-stable hinge that allows the shoe to be both fully opened and fully closed. For men or women. nike.com
ISpelling to Communicate Technique Provides Communication Tool
By Jeannie Fleming-Gifford
t started with a friend’s book recommendation — “Underestimated: An Autism Miracle” by J.B. Handley. Lisa Zimmerman, mom of Talia, who has autism, says her daughter had gone through years of therapy, but the family became curious about the Spelling to Communicate (S2C) technique after reading the book. Zimmerman then connected with “Access S2C,” which provides Spelling to Communicate services that facilitate the motor skills required for communication and daily living. She shares that Spelling to Communicate “has been life changing.”
“Talia was diagnosed as autistic at age 3,” Zimmerman says. “Talia had language and then lost it. By age 4, she had minimal language skills. From age 4 to 23, she and Talia pursued many therapies with some success, but also challenges.
Zimmerman’s husband, Rob, took Talia to Access S2C the first time. Rob watched as Talia began answering questions and immediately spelling correctly. Since that initial session, Zimmerman feels that she and her husband are getting to know Talia. Using S2C, She knows Talia’s favorite color (red), that she has always wanted to go to Sweden, and that she prefers thrifting over new clothes, as she doesn’t like to waste things. It also has been able to provide Talia with a communication tool to share if something is wrong. Talia reiterated the difference this technique has made. When asked, “What is something that makes you feel joy and happiness?” Using the S2C technique, Talia shared, “Healing my mental health by spelling to communicate.”
For more info, visit accesss2c.com or spellers com/spellers-movie for the documentary.
Lois Davis’s Dedication to NCJW/CLE and LiveSpecial.com
After spending a fulfilling day exploring the various projects and thrift store operated by NCJW/CLE, Lois Davis was reminded of why she continues to support this impactful organization. Her reflections centered on the significant role that LiveSpecial.com plays within the community.
“I couldn’t do it without Larry,” Davis remarks, referring to the endowment fund established in memory of her late husband. “Larry deserves to be remembered, and I want to honor his memory. People recognize the name; if you don’t use the name, no one will follow you in donating to others.”
Davis’s commitment to philanthropy was first encouraged by her son, Jeffrey, who highlighted how her contributions could make a substantial difference in the community. Motivated by this insight, Davis has channeled her support into various initiatives under the NCJW/CLE umbrella, including Livespecial.com. Her dedication to Livespecial. com is a testament to her belief in the platform’s value for individuals with special needs.
“There are so many people that could benefit from this magazine and the website,” Davis explains. “I wanted to support this project in some way. I know how valuable Livespecial.com is for our community.”
Through her continued support, Lois Davis not only honors her husband’s legacy but also reinforces her commitment to enhancing the lives of others through NCJW/CLE’s initiatives. Her philanthropic efforts ensure that Livespecial.com can continue to serve as a vital resource for those who need it most, reflecting her deep-seated belief in the power of community and compassion.
Nike Go Flyease
Lois Davis
A House of Their Own
Communities and organizations are creating housing opportunities for people with special needs
By Joel Hammond
Jack Hemmelgarn had largely lived at home with his parents for his entire life, save for parts of three school years when he attended Kent State University.
When Solon voters approved — with an overwhelming 83 percent “yes” vote — a ballot issue to create a new multi-family residential and special-needs zoning district just southeast of the city’s burgeoning business district, Jack’s mom Lois Hemmelgarn’s ears perked up.
Solon Community Living is the brainchild of Ara and Leslie Bagdasarian of Solon, who, like Hemmelgarn, have children with special needs and, since their birth, have wondered about how they’d be cared for after their parents were gone or no longer able to care for them. So they created Solon Community Living for families like theirs and Hemmelgarn’s, and the first residents including Jack Hemmelgarn, 30 – moved in this past June.
Lois Hemmelgarn and her husband, Terry, of Bentleyville in southeast Cuyahoga County, had been searching for a home for Jack for many years, and waited patiently as the Bagdasarians secured appropriate voter approval and got to work.
Jack Hemmelgarn said he was worried about
making the move to his new home, but those fears have eased as he’s settled in. He’s taking care of some plant watering duties on the property and was making laundry plans during an interview, as he needed freshly ironed pants for his job at Eliza Jennings in Chagrin Falls, where he’s a dishwasher.
“I was worried about how I would feel about everything,” he says. “I’ve dealt with depression before. I didn’t know if I would be OK with it but I knew it was going to be the best thing for me. I’m glad my parents got me into this situation and setup. All my worries have disappeared now that I am here.”
The community is adjacent to the Solon Recreation Center, where Jack Hemmelgarn can walk and will continue his participation in Solon Blue Ribbon Adapted Recreation, which offers community-based activities for people with developmental disabilities. It’s also a safe walk, via sidewalks, to the Solon branch of the Cuyahoga County Public Library. Soon, a massive rehabilitation of Aurora Road in Solon — one of the city’s main thoroughfares — will be complete with new sidewalks and could potentially provide him the opportunity to walk to downtown Solon.
For Lois Hemmelgarn, the move has come with
mixed emotions. She said she and her husband have had to adjust, physically and emotionally, to Jack being away from home.
“The hard part is giving up that security I feel I gave him at home 24 hours a day, versus letting him go out and do this,” she says. “We raised him and we always said, ‘We are raising a child that can become an adult who is a productive member of the community and can do things as much as he can on his own.’ This was the step we had to take.”
Now, the planning really begins. There are details to be hashed out, such as transportation to his job, food shopping and delivery, and more. But perhaps most importantly, there’s housewarming party planning.
Jack said his twin 24-year-old sisters, who live in Chicago and Boston, respectively, along with friends and cousins, have been asking him if he was going to have a housewarming party.
“Heck yes I am,” he said with a laugh.
PARENT WORRIES ARE COMMON IN SIMILAR COMMUNITIES
NCCH and Cuyahoga County Board of Developmental Disabilities (Cuyahoga DD) has also introduced a new TryTech model, where residents try an advanced-tech apartment for three weeks to gauge their comfort in living independently, another effort to minimize the worries and fear that residents experience.
Several communities in Northeast Ohio are providing adults with disabilities independent living options and families of those individuals peace of mind that they’ll be cared for.
Cost varies among all of these facilities; many NCCH residents, for example, are assisted by disability, social security and other mechanisms.
Solon Community Living, meanwhile, is all private pay for residential, but services are paid through similar sources — disability, Medicaid and other sources.
West says the families with whom he works directly and his organization works broadly are relieved by and excited about the independence these communities provide.
Those worries detailed by Lois Hemmelgarn are exceedingly common among parents whose children face developmental challenges, says Chris West, president and CEO of North Coast Community Homes, a Garfield Heights-based organization that develops high-quality homes where individuals living with developmental disabilities and mental health challenges can lead lives of dignity, self-expression and connection.
The organization serves more than 600 individuals in nearly 200 homes located throughout Cuyahoga, Summit, Lake, Stark and Erie counties. West said that the fear is palpable when he speaks to families about their options with NCCH.
“I can see it on parents’ faces every time I meet with them,” West says.
In the past, West said, the individuals served by communities like NCCH had fewer options, and sometimes only one. And where NCCH in the past had largely been focused on singlefamily homes, it’s expanding its options for families to include apartments within larger buildings, tiny homes, duplexes and more, as families’ wants and needs change.
“The residents love to be on their own, just like anyone else, and the parents know at some point they’re going to be gone,” West says. “They just want to know their kids are going to be fine, and these options give them that sense of peace.”
Here’s a look at some of the communities providing these services in the area:
MAXIMUM ACCESSIBLE HOUSING: Cleveland-based organization with five apartment communities located in University Circle, Mentor-on-the-Lake, Avon Lake, Parma and Sheffield Township. maxhousing.org
MEDINA CREATIVE HOUSING: Owns 14 single-family homes in Medina County and an independent living experience home in Brunswick with eight efficiency units, part of its Creative Living Transitions program. medinacreativehousing.com
SOLON COMMUNITY LIVING: Has 14 private suites for residents and six caregiver suites near downtown Solon and adjacent to the Solon Community Center and Solon branch of the Cuyahoga County Public Library. soloncommunityliving.org
THRIVE COMMUNITY LIVING: Berea-based organization that provides apartment homes for adults ages 22-35. thrivelivingcle.org
NORTH COAST COMMUNITY HOUSING: Garfield Heightsbased organization that develops and maintains nearly 200 homes and serves more than 600 individuals across Northeast Ohio. ncch.org
SUMMIT HOUSING DEVELOPMENT CORPORATION: Cuyahoga Falls-based organization that owns more than 225 homes in 17 counties that provide housing for more than 500 individuals. summithousing.org
THE ARTS AND EARLY CHILDHOOD
By Ann Marie Raddell, MT-BC, NICU MT, Director of Creative Arts Therapies at The Fine Arts Association
Even outside of traditional music, dance, theater and visual arts classes, simple engagement in the arts is found in the common interaction between adults and children. One may notice a mother comforting her baby with a quiet lullaby or a steady shushing sound. Another may notice a father holding his child while also rhythmically and slowly swaying. A grandfather may share his hat with his grandchild in a manner of playing “dress up.” Whether intentional or not, those biological tendencies have purpose in that they are calming to a young one and allow that child to connect with their environment.
The fine arts allow young children to learn the necessary skills to selfregulate and cope, interact with others, improve focus and cognition, and be more self-expressive. The arts offer a different approach to instilling
those needed tools into developing children in an engaging way. The beautiful aspect of artistic expression is that it looks different for each individual child. One child may actively dance and move, while another may quietly observe from a distance. Another child may loudly play a drum, while another may quietly color.
Caregivers of children with disabilities
are able to encourage creativity and fun, while also being mindful of the specific needs of the child, whether sensory, emotional, behavioral, cognitive or physical. Those skills can then be transferred outside of the arts classroom into everyday activities or even at home.
Children with disabilities can engage in multiple arts experiences, such as creative movement and dancing, instrument playing and singing, painting and creating with air dry clay, and puppets and roleplaying.
The Fine Arts Association offers a variety of early childhood arts classes for children from birth to age six alongside a caregiver. Not only do the youngest of artists get to purposely learn an art form, such as music, dance, theater and/or visual arts, they also get to bond with a loved one in the process. Visit fineartsassociation.org
MAKING A PLAN FOR SCHOOL TRANSITIONS
Preparing to transition to a new school is an exciting time, but it can also be difficult for children with special needs. As a network of private, Catholic K-8 schools for children with learning and social differences, this is a challenge our students have often faced before coming to us. At Julie Billiart Schools we build executive functioning, self-regulation, and self-advocacy into everything we do to help our students when they transition here.
BEFORE MAKING THE TRANSITION TO A NEW SCHOOL, HERE ARE SOME THINGS YOU SHOULD CONSIDER:
• Make a transition plan with your child, what will be the same/different
— Environment
— Academic demands
— Lunchroom
— Teachers
— Support systems
• Have a conversation with your child about transitioning to a new school
— Communicate openly with your child
— There should be ongoing discussions with your child
— Address challenges now, don’t wait
• Navigating social changes
— Plan a playdate to help your child adjust to the new environment
— Keep “old back-to-school routines”
— Be realistic about the upcoming challenge
— No problem now could become a problem later, be prepared
Transitioning to a new school can be especially challenging for students with special needs. Changes in routines, environments, and support systems can be overwhelming. New faces, unfamiliar expectations, and sensory adjustments can increase anxiety and frustration. However, with the right support, students with special needs can successfully navigate this transition and find success in their new school environment.
PHOTO COURTESY OF JULIE BILLIART SCHOOLS
CREATE A FAMILY CULTURE OF FITNESS AND ACTIVITY
The importance of fitness for everyone, including those in the special needs community, can’t be overremphasized. The obesity rate in the special needs population is higher than the already high rate in the typical population.
People who are active and fit are healthier, have less stress, tend to be more social, and have less health care costs. They also are easier to provide care for as aging individuals. Exercise classes are social activities where individuals meet and get to know others, make new friends, have fun and engage in friendly competition.
Parents in the special needs community can create a family culture of activity and fitness.
Karen and Tony D’Orazio decided early on that they would allow their son Jake to be active.
Karen D’Orazio had him in the water at a program offered by Cuyahoga County Board Of Developmental Disabilities when he was about six months old. After watching “Rocky” movies, Jake’s parents said Jake began using a heavy bag and speed bag. He also learned how to ride a bike.
“We noticed that Jake seemed to be more mentally astute as he continued to work out, swim, etc.,”
Tony D’Orazio says. “As we saw his progress, we realized we had to serve and help others in the special needs community.”
“Don’t be afraid to have expectations and to coach and
THE "PLANK" EXERCISE (ABOVE)
The official exercise of Jacob’s Ladder Fitness. “You can adapt the exercise: do it with knees on the floor; do it on the steps with feet at the bottom and hands on the third or fourth step up; do it on a coffee table in the family room.
— Tony D'Orazio
PHOTOS COURTESY OF JACOB'S LADDER
enthusiastically encourage,” he says. “Start with a 10-minute walk and progress from there. Small steps, but as Rocky would say, keep moving forward. As your child grows up, you can also get them involved in places such as Jacob’s Ladder Fitness, Special Olympics, and the many other fine organizations in the Cleveland area. Also, don't leave out the possibility of them participating in traditional/ typical sports activities.”
Tony D’Orazio encourages parents to consult with their child's physician and physical therapist.
“I’ll almost guarantee they will encourage physical activity,” he says. “Then begin with simple play time physical activities like rolling around on the family room floor; then grow into taking walks, riding bikes and working out. Every child — whether typical or special needs — has different abilities. If you are not sure about what your kids can do, try different things and be open to exercise modifications.”
As an example, Tony D’Orazio offers the “plank” exercise, the official exercise of
Jacob’s Ladder Fitness.
“You can adapt the exercise: do it with knees on the floor; do it on the steps with feet at the bottom and hands on the third or fourth step up; do it on a coffee table in the family room (check with mom first!); or do it standing with hands forward on the wall,” Tony D’Orazio says. “Then work on progressing toward a regular plank. Jake and a few of our other students can plank on a wall facing downward, away from the wall with feet up on the wall and almost parallel to the wall!”
Can’t do a squat? He suggests using a chair, starting by standing up from and sitting down on the chair. Adaptations also include the amount of weight used, number of reps, time of each exercise, and overall time of the exercise session.
“My main advice would be for the parents to be active themselves and model that behavior,” Tony D’Orazio adds. “The single biggest predictor of a child’s physical activity level is the activity level of the parents. It will be good for the whole family.”
“We noticed that Jake seemed to be more mentally astute as he continued to work out, swim, etc.”
— Tony D'Orazio
Advocacy
WHEN IT COMES TO AUTISM, LATINO FAMILIES FACE ADDITIONAL CHALLENGES
Cleveland native Joseline Menjivar is a single mother of two energetic little boys, 5-year-old Maverick and 10-month-old Jameson. Their life is, no doubt, busy. And like many families, their journey has been full of twists and turns, starting with Maverick’s second birthday.
“I noticed at his birthday party that he did not play with any of the kids. I had a feeling something more than just a speech delay was going on,” Menjivar says.
She says it wasn’t until her son’s speech therapist pulled her aside that she made the connection.
“When I heard the word autism, I felt my heart and body sink. I was so scared, so worried,” she says.
Maverick’s formal autism diagnosis came at age three, and as a member of Northeast Ohio’s Spanish-speaking community, he is one of the fortunate ones.
Michelle Mejia is the Spanish helpdesk coordinator and bilingual support for Milestones Autism Resources. She says research suggests that while autism prevalence rates vary among different racial and ethnic groups, Latino children are often diagnosed later and receive fewer support services compared to their non-Latino counterparts.
“These challenges stem from various factors, including language barriers, cultural beliefs, limited awareness of autism signs, and socioeconomic disparities,” Mejia says. “Stigma surrounding developmental disabilities within the Latino community can contribute to delays in seeking diagnosis and support services.”
As a result, many Latino families face significant obstacles in navigating the health care and education systems to meet their children’s needs. Menjivar says she has seen this struggle firsthand.
“My family was in denial that my son had autism,” she says. “They would suggest things that I should do so that he would ‘get better.’ In our culture, we often seek support from our families, and oftentimes we are
left feeling alone and misunderstood.”
Menjivar says she is glad that her son’s speech therapist was also Latino and understood the barriers.
“My knowledge on autism, and my child specifically, has grown tremendously,” she says. “I have now been able to help my family and friends understand autism better.”
Mejia says in order to make success stories like Menjivar’s more common, we need to address the disparities in diagnosis through cultural competence training for providers and educators, community outreach, and enhanced access to services. That includes streamlining access to diagnostic evaluations, early intervention and therapy, and expanding bilingual services.
Mejia is deeply committed. She has already helped the Milestones Spanish Helpdesk expand to serve nearly 50 families locally, and has established vital community partnerships with Metrohealth, NAMI, Tri-C, and the Ohio Department of Developmental Disabilities.
“The ultimate goal is to ensure equitable access to empower families to navigate their journey with autism more effectively,” she explains. “My vision is one of inclusion, acceptance, and support, where every individual with autism and their family receive the resources and opportunities they need to thrive.”
The Milestones free Helpdesk is an autism services guide, connecting you with resources to meet your needs. Milestones has Spanish-speaking staff ready to take your call. Contact the Spanish Helpdesk at 216-4647600 ext. 5, or visit milestones.org/helpdesk
Joseline Menjivar family, Michelle Mejia and Hispanic outreach event.
Therapies HELPING KIDS ACHIEVE POTENTIAL
Intensive therapy provides opportunities to embrace abilities and promotes independence
By Bonnie Boenig, MED, OT/L, C/NDT, VP of Therapy Business Enterprises, Achievement Centers for Children
As a therapist specializing in intensive therapy for children with special needs, I have witnessed firsthand the transformative power of setting realistic yet ambitious expectations. These expectations are not just arbitrary goals; they are guiding principles that pave the way for young clients to reach their potential. Here’s why setting expectations is crucial and how they can be implemented effectively.
EMPOWERING THROUGH STRUCTURE
Expectations provide structure and direction in the child’s life, leading to increased confidence and a sense of accomplishment as they meet milestones along the way.
PROMOTING INDEPENDENCE
FOSTERING A POSITIVE MINDSET
When parents and therapists believe in a child’s abilities and set goals accordingly, they convey a message of optimism and possibility.
Setting appropriate expectations promotes independence by encouraging children to take initiative and responsibility for their actions. This allows them to develop critical life skills such as problem-solving, decisionmaking, and self-advocacy.
CELEBRATING PROGRESS
Each achievement is a testament to a child’s resilience and determination. Celebrating these victories fosters a sense of pride and motivation to continue striving toward new goals.
In the Intensive Therapy Clinic, setting expectations for children with special needs is not just about reaching specific goals; it’s about nurturing potential and supporting their journey toward independence. Intensive therapy sessions that last anywhere from two to four hours per day for two to four weeks provide highly skilled hands-on therapy, and allow time for practice of new skills that can be carried over into real life environments. Setting realistic yet ambitious goals, celebrating achievements, and fostering a positive mindset create a supportive environment where children can thrive and achieve their highest potential.
PHOTO
Achievement Centers for Children
therapists Bonnie Boenig and Stephanie Barnett work with a client in an intensive therapy session.
Therapies
GIVING VOICES TO NON-SPEAKING CHILDREN
Augmentative and Alternative Communication
Augmentative and Alternative Communication (AAC) allows nonspeaking, limited language and children with severe speech sound disorders to express themselves and participate in social interactions. The use of AAC systems, ranging from simple picture boards to sophisticated speech-generating devices, transforms the communication landscape for these children, allowing them to communicate their wants, needs and ideas.
Understanding AAC AAC has tools and strategies designed to support or replace spoken language. It includes low-tech options like sign language and communication boards, as well as high-tech such as dedicated speech-generating devices and tablet apps. The goal is to provide a means of communication that is accessible and effective for each child’s specific needs.
By Rebecca Mental, PhD, MPH, CCC-SLP
The Importance of Early Implementation Early introduction of AAC is crucial. — The sooner a child starts using AAC, the better their chances of developing essential communication skills. Early use can help mitigate frustrations that arise from an inability to communicate, reduce behavioral issues, and enhance social interactions.
Tailoring AAC to Individual Needs
Assessments by speech-language pathologists are vital to identify the most suitable tools and strategies. Customizing AAC systems to align with a child’s interests, preferences and everyday environments significantly enhances their effectiveness and adoption.
Fostering Inclusive Environments
For AAC to be effective, it must be embraced by the child’s entire support network. Parents, teachers and peers
play a pivotal role in the success of AAC. Training and ongoing support ensure that everyone involved understands how to use the AAC system and integrate it seamlessly into daily interactions.
Embracing AAC for non-speaking children is a powerful step toward inclusivity and empowerment. Through personalized systems and supportive environments, these children can find their voices and share their unique perspectives with the world.
Loaner AAC Program at Cleveland Hearing and Speech Center at Cleveland Hearing and Speech Center (CHSC) understands that the cost of AAC devices can be prohibitive for some families, and that insurance may take a long time to approve a device. To address this, CHSC has a loaner program where a client can borrow a device at no cost. To learn more about this and other services, don’t hesitate to reach out at 216-231-8787.
START THE PROCESS OF SPECIAL NEEDS ESTATE PLANNING
Estate planning can feel intimidating. You may be unsure how to find an experienced attorney you can trust who charges a fee that is within your budget. The vocabulary may feel unnecessarily complicated. And when you have a child with special needs, it may feel like the weight of the world is on your shoulders. Here are a few options available to families starting the process or re-evaluating the documents signed years ago.
There is no minimum or maximum needed to fund a special needs trust and a beneficiary of a properly drafted special needs trust can still qualify for public benefits.
A TRUST is an agreement between the person establishing the trust (settlor) and the person responsible for managing the trust (trustee) for the beneficiary. A special needs trust is the term used when the beneficiary has a disability. The trustee administers the trust but is also responsible for understanding the nuances of trust management if the beneficiary receives public benefits like Waiver, Medicaid or SSI, or is under guardianship.
There is no minimum or maximum needed to fund a special needs trust and a beneficiary of a properly drafted special needs trust can still qualify for public benefits. The trust can be funded during the settlor’s lifetime or at their death. It can be funded with assets like life insurance, real estate and stocks. Nonprofit organizations like Community Fund Ohio can assist if a family doesn’t have a trusted family member or friend to serve as trustee.
An ABLE Account is another option. Known in Ohio as STABLE, an ABLE Account is like a 529 college advantage account, but instead of educational expenses it is used for qualified disability expenses. It is established by the person with the disability or their legal representative without the assistance of an attorney. A competent adult beneficiary receives a debit card and, if administered properly, does not negatively impact the beneficiary’s eligibility for public benefits.
One shortcoming of the ABLE Account is that it can only be funded with an amount equal to the annual
gift tax exclusion unless the beneficiary is also working; in 2024 that is $18,000 per year. An ABLE Account is therefore not a way to leave significant assets for the benefit of a person with a disability.
It is tempting to leave the planning for the next generation, but when a person with a disability inherits assets directly, the probate court is usually involved which can make the details public, increase costs, and cause the process to take longer. Furthermore, the options available to a person with a disability are limited and frequently require payback to the state Medicaid agency, which can be avoided by pre-planning.
Northeast Ohio has many experienced special needs attorneys who can guide a family through the process. You can search the Special Needs Alliance, NAELA, and ASNP websites for attorney directories or contact your local bar association for a referral.
Community Fund Ohio is a nonprofit founded in Northeast Ohio more than 30 years ago and is happy to assist. You can find their trust agreements and educational materials by visiting communityfundohio.org
Our Inclusive Community
By Angela Gartner • Photography by Kim Stahnke
SHERRY NOLL
Strength To Keep Moving
When Sherry Noll, 69, had a hip replacement in 2018, she didn’t realize that it would become a lifechanging experience.
It was a really severe replacement,” she says, adding that she had been working as a principal at a charter school during that time. “Once I had the surgery, I couldn’t put more than 50% weight on my legs for six weeks and basically I was in a wheelchair. It’s hard because people don’t really understand. (They think) because you have hip surgery, you (should be) fine afterwards.”
While Noll does physical therapy on and off, after her surgery she never walked normally, saying, “It just never healed.”
“I’ve been doing water physical therapy in the pool, and it’s funny I can walk normally, but once I get on land, my mind just doesn’t connect with what my body should do.”
However, it’s not stopping Noll from doing the things she loves, such as traveling. Noll says she can walk short distances while using a cane, but has made adjustments, such as renting scooters or using a wheelchair, if necessary for longer trips.
“It’s been a hard adjustment and I try not to think about it.” she says. “As I’m getting older, if I don’t work on it with exercises and do my routines, walking gets harder and harder. I want to do as much as I can.”
She tries to stay independent, but also has help if needed from her family. In addition to doing water physical therapy, Noll does Pilates, too.
KALEB LLOYD Growth Through Showing Initiative
Kaleb Lloyd, 30, of Solon, has been in the service industry for a long time, as his mom Beverly Lloyd says he’s a “people person.”
“It seems like a good fit for him because he likes people and he likes helping,” Beverly says, adding that she and Kaleb, who has Down syndrome, went over things for the job interview, but her son took the initiative by handling the interview alone. “We just practiced every day and when they called and said he got the job, I just had tears in my eyes.”
While Kaleb currently works at Harvard Chick-fil-A, he’s worked in various restaurants around the region.
Beverly added that the Jewish Family Service Association (JFSA) YouthAbility program helped her son develop a lot of skills that she believes helped him get a job.
“What I’ve learned is that the most important thing is to build up your core and build up strength,” she says. “Just push yourself to do those things because it’s really easy to get in a rut and not want to walk.
cutline
Check out James Sulzer and his daughter Liviana’s story on pg. 22
“It’s part of my life now, unfortunately, but I’m not going to let that stop me,” Noll adds. “I just think that it’s so important to recognize that people come in all shapes and sizes with all different kinds of abilities and disabilities, and we have to really be there to help anybody that needs help.”
“He does a lot of volunteering and life skills with them,” she says.
Beverly advises other parents to know their child’s strengths and passions when it comes to job opportunities.
She says that Kaleb, a graduate of Solon High School, has a passion for the drums and played in the high school band for four years. In addition to drumming, Kaleb likes to do a lot of different things such as hanging out with his friends.
When asked how Kaleb has grown over the years, Beverly says he takes a lot more initiative.
“I’m so proud of him for taking a lot of initiative when something has to be done,” she says, adding that parents don’t have to just let their kids do whatever they want to do, but can discipline them with love. “Your child can do a lot more than you think. You can push him or her, push your child to the limits. Always push them to be the best that they can be.”
Wielding Your Expertise In Your Child’s Care Decisions
by James Sulzer
One sunny day in Texas, near the beginning of the COVID-19 pandemic, a falling tree branch struck our almost 4-year-old daughter Liviana in the head, causing a severe traumatic brain injury. In a heartbeat, our lives — and Livie’s life — changed forever, while her rehabilitation journey began.
In a quirk of circumstance, I have been honing my expertise in rehabilitation engineering research for over 20 years. I’ve studied and taught at some of the most lauded rehabilitation environments in the world. I’ve designed and built robotic exoskeletons to assist walking and used wearable technology to track recovery after a stroke. My wife Lindsay, a bioengineering Ph.D., works in tissue regeneration and cell therapy. After five months with Livie in hospitals, as she underwent neurosurgeries and began intensive therapy, we started gaining expertise from an entirely different perspective.
These past four years have been challenging, to say the least. Lindsay and I have had to learn how to take care of a whole new person. Livie is substantially impaired physically and cognitively, unable to speak, and needs assistance with all daily activities. We’ve learned to rely on friends and family more than ever before; manage the never-ending bureaucracy of health insurance; find at-home caregivers; arrange doctors and school services; and provide at-home rehabilitation therapy and needed medical care. When we moved home to Cleveland two years ago with our three small children, we had to discover and set up these services all over again.
Yet despite the sadness, stress and frustrations, we realize we have grown, gaining wisdom and expertise that, for better or worse, we must now
wield. That is easier said than done.
Specialists often tell us, “You’re the expert on your child.” Are we? As scientists, we have access to all available research at our fingertips. Still, there’s not enough research out there and we receive sparse clinician input on anything outside of standard therapy. This leaves us prey to overhyped anecdotes of, at best, unproven treatments. Lindsay and I have been trained to perform quantitative, objective measurements, but clinician-driven evaluations are rare and don’t always reflect what we see at home. Despite us being engineers, we’ve been railroaded into making decisions on home technology that we should have pushed back on in retrospect. I’m not faulting our caregivers — they have been nothing but professional. I’m faulting a medicoresearch system that calls us experts but doesn’t treat us that way.
We may not be “the” expert, but we are “an” expert, and that’s enough to add value to any partnership. We know how the complex mechanism of our lives works, from our medical odysseys and raising siblings to coordinating school schedules, providing transportation and establishing new friendships. Knowledge of these challenges — social-emotional, logistical, physical, financial and medical decision-making — are poorly understood in the clinical and research communities. Certainly finding the right solutions for Livie and our family should include this wisdom.
I’ve also been trying to adapt this expertise into my own rehabilitation research. For instance, parents need enriching activities at home that can address their child’s cognitive and other impairments but don’t require full adult supervision. With colleagues at MetroHealth, United Cerebral Palsy of Greater Cleveland, and the local adaptive toy organization RePlay for Kids, we’re modifying a child’s ride-on car that can be used indoors as a driving simulator or outdoors like a normal vehicle. In other research projects involving adults with neurological injury, some of my active team members are part of the community of individuals we are trying to help.
I hope other families realize the value of their knowledge and share it. Those who like exploring the future of treatments can get involved with research, too. For instance, a Canadian organization called CanChild trains families how to get involved in conducting research. There are informal disability community networks where you can pass on your knowledge or gain insight from speaking with others who have solved these issues. One resource, an app called TurnTo, started by a mom of two kids with CP, aims to blend new research findings with opinions of the community. You can exchange knowledge, the latest in scientific literature and home hacks. I hope clinicians and families learn from each other and become better partners.
One of the proudest moments of my life was when I received my doctorate in mechanical engineering. Despite not receiving a new honorific after four years of immersion in the disability community, I still feel that same pride of expertise. Along with Livie, Lindsay and I have overcome challenges and gained wisdom, and I hope all members of the disability community appreciate the value they bring to the world.
James Sulzer, Ph.D., is staff scientist at MetroHealth System and associate professor in Physical Medicine and Rehabilitation at Case Western Reserve University. You can reach him at james.sulzer@case.edu
LEFT PHOTO: Livie with her mom. Lindsay and her father James. RIGHT: The Sulzer family.
Exercise Your Right to Vote!
After discussing voting practices in local or national elections with several community members, I discovered that there are innumerable issues for those with special needs, depending on the challenges they face and where they reside.
Examples include struggles to request and then complete and mail an absentee ballot; accessibility to voting; the lack of knowledge and understanding of well-meaning poll workers; and ensuring ballots are filled out properly with family oversight.
Having a disability, whether temporary or permanent, should not interfere with the opportunity to make your voice heard, or to help your loved one make their voice heard. Under state and federal law, voters with disabilities must be given the same opportunity for access and participation as any other voter. In Ohio, all voting locations must be made accessible for people with disabilities.
“The Ohio Secretary of State strives to ensure that Ohio’s elections are secure, accurate, and accessible for all voters — including those with a disability,” according to a statement on the Ohio Secretary of State Frank LaRosa’s website. “All eligible Ohioans can make their voices heard privately, independently, and with confidence through online voter registration, accessible in-person voting, or absentee voting.”
If you or an individual of your family with disabilities want to vote, consider these election season tips from LaRosa’s office:
Here are ways people with disabilities and their families can navigate the election process.
By Cindy Glazer
• In Ohio, every polling location is required to have a voting machine that is accessible to individuals with disabilities. These machines include features like audio ballots, Braille touch pads, large print/ zoom features, and height and tilt adjustments on the screens.
• If you cannot mark your ballot or if you need assistance because of your disability, you may bring someone with you to help you vote, or you may ask for assistance from precinct election officials.
• Having a guardian does not take away your right to vote. As long as you meet eligibility requirements and have not been declared incompetent for voting purposes by a probate court, you are qualified to register and vote.
• If a person has a disability and is confined to a public or private institution, the county board of elections can deliver a ballot to them.
• Remember, in Ohio, you do not need to state a reason to vote absentee. Voting with a mail-in absentee ballot is a great option.
Don’t be discouraged by the challenge. It is your right and your family member’s right to be counted. No vote, no voice.
For more information, visit ohiosos.gov/elections/voters/ voters-with-disabilities
“There are many issues that can affect people with disabilities so it is important that they vote for the issues and candidates because it will affect the quality of their lives. They will also want to elect officials who will best represent them and their needs
on issues that include Social Security, Medicaid, housing, transportation etc”
— Laurie Kowalski
Laurie Kowalski, with her son Alex on election day.
In person Voting:
You must bring one unexpired ID with your picture on it.
Acceptable IDs are:
OHIO driver's license
State of Ohio ID card
Interim ID form issued by the Ohio BMV
U S passport or US passport card
U.S. military ID card
Ohio National Guard ID card
U.S. Dept. of Veterans Affairs ID card
By Mail:
ONE of the following
ID number of one of the above accepted IDs. (No photo required ) OR
Last four digits of your Social Security Number
Transportation to the polls is not required in Ohio law. You can mail an absentee ballot or get someone to drive you to the polling place
Curbside voting is your right if you are unable to enter the voting place. It is best to call ahead to your board of elections with this request, or to check if your local polling location is accessible
You may bring someone with you to help you vote, except for your employer, your union, or a candidate on the ballot
Accessible Voting Machines should be available in every polling place You can ask for one. The machine features include:
Download a voter registration form at https://www ohiosos gov/globalassets/elections /forms/vr form 04-2015 pdf)
Ohio law requires you to register at least 30 days before the election starts
Ohio Secretary of State information on elections and voting, and links to county boards of election: https://www ohiosos gov/elections/
Disability Rights Ohio ALL DAY VOTER
HOTLINE ON ELECTION DAY: 800-282-9181 Or 9 AM to noon and 1 PM to 4 PM on other days
These community groups bring people together to provide inclusion, learning and fun through the arts — music, theater, crafts and more. Explore opportunities for individuals of all abilities to nurture and share their gifts with others
By Lindsey Geiss
Rockability goals include increasing confidence and self-advocacy, building community
ROCKABILITY
A performance band for musicians with developmental disabilities. (Chesterland)
Too many adults with disabilities lose their creative outlets and enrichment activities upon graduation from high school.
“Life doesn’t have to become drudgery after high school,” says Lori Weber, founder of RockAbility and NPower Services.
The Chagrin Falls mother of four saw this with her own adult daughter, Kira, so she began finding — then creating — opportunities through her nonprofit, NPower Services, which helps adults with developmental disabilities connect with meaningful
activities in volunteer work, skill-building and job coaching for employment, fitness (through Geauga County Joggers & Walkers, Adaptive CrossFit and more), and entrepreneurship.
As a veteran pianist and vocalist herself, Weber knew music had to join the mix.
“There were a lot of different things over the years that brought it about,” she recalls, citing one experience in particular. “I heard a young lady at a Special Olympic softball game belt the National Anthem on pitch and on time with confidence and thought, ‘She should be a rocker!’ The world would be a better place if it heard her sing.’’
Sure enough, Jen Gerber had not sung since high school, so with her as lead singer, Weber rounded up other
connections and improving musical skills.
musicians and support from the community. RockAbility was born two and a half years ago, thanks in large part to a Metzenbaum Foundation grant. Weber runs the organization with assistance from Anne Marie Wolfe, owner of Geauga Music Center in Chardon.
The music mentor performance program connects talented adult musicians with developmental disabilities with professional musicians to learn and play together. Composed of 20 people in their 30s through 60s, the band includes two lead vocalists, several backup vocalists, three pianists, guitarists, bassists, and veteran drummer and mentor Carl DeScott.
RockAbility’s goals include increasing confidence and self-advocacy, building community connections, and improving musical skills.
“The skills of being in a band translate into everything else you do,” Weber says. “While doing this, they are getting better at their craft. They all practice on their own and are expected to come prepared for rehearsals.”
Most musicians bring their own instruments. The band rehearses weekly and does small ensemble performances at existing open-mic venues, in addition to large group performances at fully-integrated music shows of various genres.
Not an instructional program run by teachers, the band exists for musicians to bring their existing skills and help elevate their abilities alongside experienced musician mentors who already gig and record.
“Together with bassist Mark Devonshire (father of a percussionist student member Kathrine) we provide the foundation,” DeScott says. “Since I started drumming with them a year and a half ago, I’ve watched them grow music-wise, but the relationships built, and their focus and professionalism are especially impressive."
Weber says the band has built a repertoire of around 60 songs, and they even shoot videos.
Kira Weber supports the group through her art, creating wooden guitars, selfie stations and other projects.
“Our flute player, Melissa Kapela, is a textbook example of why I started this,” Weber shares.
“School was horrible, but the Hudson band gave me a place to belong,” Kapela says. “I didn’t know I was autistic, and everything was a struggle. I played flute since fifth grade, but I struggled with rhythm and memorizing music. When I got a diagnosis and support, the difference from 9th to 10th grade was night and day. I got help with focus and was finally able to stay in step and could memorize the music. After high school, I putzed around with the flute but hadn’t really picked it up until I met Lori two years ago. I never thought it would be a part of my life almost 30 years later.”
For more information on RockAbility, NPower Services programming, including a calendar of events and waiver/ registration form to participate, visit npowerservices.com or email Weber at lori@npowerservices.com.
STAGECRAFTERS BROADWAY BUDDIES
Adaptive musical theater program showcases students with special needs ages 16 and older. (Orange)
Students with special needs work alongside theater professionals, licensed staff and high school or college student volunteers. Each “STAR” performer is paired with a one-on-one “Buddy” to assist with activities, and choreography is adapted to individual needs.
Buddies wear all black to keep the focus on STARS who are in full costume with backdrops, lighting, etc. — gaining a true theater experience. Some STARS are non-verbal or communicate with a device, while others are hearing or visually impaired or use a wheelchair. Paraprofessionals provide support. STAR students who cannot participate independently must be accompanied by a parent or caretaker.
“I want young adults to have an opportunity to open their heart and mind, and work with someone different than they are,” says Wendy Scott-Koeth, Broadway Buddies founder and artistic director.“ They learn to have empathy.”
Scott-Koeth has been producer and coordinator of Stagecrafters for 35 years, and her lifelong passions for both inclusion and theater have helped students fulfill their dreams.
“One of my students, John McGinty, started out as a sign language interpreter, and he is now living his dream as an actor on Broadway,” she shares.
While Stagecrafters celebrates 50 years, Broadway Buddies will soon turn 15.
“In elementary school, when I was 12, working with a student who was nonverbal, I wanted to pursue a career in special needs — I adored Maggie; we became so close,” Scott-Koeth says. “I also had a love for theater. After I went into theater and was teaching,
INSIDE CIRCLE
I realized so many of my students had siblings with special needs. In 2010, I finally merged the two worlds after years of talking about it.”
A grant from Cuyahoga Arts & Culture kickstarted a dream “to give everyone the Broadway experience,” and Broadway Buddies is sustained by continuous grants from the David and Jacqui Clark Family Fund.
Broadway Buddies operates seasonal sessions with week-long musical theater camps in the summer, including a Dream Team sleepover camp. During the school year, Broadway Buddies Show Choir and culminates in a musical review. The Broadway Buddies LOL Comedy Troupe and Project Dream Role film class on the weekends allows each participant to star in his or her own edited musical scene/video.
For more Broadway Buddies, visit Orange Community Education & Recreation at orangerec.com or contact Claire Connelly at broadwaybuddiesstagecrafters@gmail.com. Funding may be available through the county.
An informal drum and handheld instrument circle. (Chardon, Burton, Independence)
This group uses musical therapy techniques to develop rhythm and melody skills, but mostly have fun. Participants bring their own or use the group’s drums, ukuleles or other percussion instruments. Anyone with extraordinary needs is required to bring a provider. Events are held at Chardon or Burton libraries, and the Down Syndrome Association of Northeast Ohio (DSANEO) in Independence. Dedicated, well-practiced participants earn the opportunity to perform onstage with RockAbility during the band’s event(s).
Kapela, who lives in Bainbridge, now participates in most of the events Weber organizes, including Power Ups fitness classes and Inside Circle.
“Until I met Lori, I didn’t get out of the house much except for work (at a riding stable and Hiram Farm),” Kapela adds. “She made me busy. My biggest issue doing stuff was getting to things, and Lori has changed the lives of so many people." Visit npowerservices.com or email Weber at lori@npowerservices.com
Broadway Buddies and their production of "Seussical the Musical"
IMPROVANEERS
The world’s first all Down syndrome improvisation troupe performs and trains others through “The Improvaneer Method” to build skills, confidence and joy through laughter. (Medina)
Humor is a gift and guiding force in Rob Snow’s life that he has harnessed to unite and empower others. Four years after their son Henry was born with Down syndrome, Rob and Ellen Snow founded the nonprofit Stand Up For Downs to raise funds for the Down syndrome community through comedy to support medical research, local efforts, adoption, sports and camaraderie, new parent outreach, and awareness and advocacy. Since 2013, their events have raised over $500,000.
In 2017, Rob Snow further applied his background in professional standup comedy and improv training to teach others. He suspected improvisation could impart valuable skills to those with developmental disabilities — problem solving, quick thinking, teamwork, listening, and overall communication skills like voice projection and eye contact, as well as building self-confidence to increase social, workplace and lifetime opportunities. And he was right. Improvement was immediate, and the results have been groundbreaking.
“Assume competence,” Snow says. “Not enough people do. We allow opportunities so as not to pigeonhole individuals.”
What began with a 20+ person audition in April 2018 became a dedicated team of 10 Improvaneers training weekly for a year and a half. Their 2019 “Not Your Average News Team” sketch and improv show put them on the map — playing to over 600 fans in two sold out shows and earning national media attention, leading to the formalization of the process.
Now “The Improvaneer Method” teaches improvisation to over 500 individuals across the country each week, including local, in-person classes in Medina, North Olmsted, Independence, Akron and Canton. A new three-day summer camp for ages 16 and older was offered in partnership with Easter Seals and led by Bowling Green University Student Certified Directors.
There are three levels — improvisor, improvaneer and performer — that each last a year and progressively advance through specific games using the “scaffolding” technique (incrementally building on skills with repetition and mastery over time).
The method can be purchased as a license, workshop, performances, online classes and one-onone sessions with youth (age 10-15) and adult options.
“No one who participates in this program will
ever be forced to do something they don’t want to do, and they will never be told to do something that scares or embarrasses them,” Snow says. “We will work to understand each individual’s abilities and thresholds of discovery and enjoyment of the program to provide the best experience possible.”
From the beginning, founding member Nick Doyle, of Canton, has been instrumental to the Improvaneer Method’s success. As an assistant director and national sales executive, Doyle works closely with Snow, also serving on the board of Stand Up For Downs.
“I’m a master at improv, a leader, a big brother [to Henry and others],” Doyle says.
From Canton to Capitol Hill, Doyle applies these skills honed over the years to flourish as a selfadvocate, nationwide keynote speaker, National Down Syndrome Society Ambassador, restaurant host and more.
He continues to perform with the group while also performing his one-man show “Unleashing the Big Dog: My Rollercoaster Journey to Success” about overcoming challenges — including his brother passing away, his mom’s cancer, lost jobs and relationship break-ups to find success and happiness, while keeping his sense of humor along the way.
“I love to be networking with everyone,” Doyle shares. “My favorite thing is to perform. I am a people person. I want to entertain and make them laugh. I am trying to own my own business. If there’s not a seat at the table, bring your own chair.”
The group seeks “global domination.” If they achieve it, the world will certainly be a better, more understanding — and more joyful — place.
For more information, including upcoming events, purchasing classes and more, visit theimprovaneermethod.com (also on Facebook) and standupfordowns.org.
Improveneers debut
PROJECT KINDNESS
Creative arts and social opportunities through community service. (Geauga County and surrounding communities)
Adults with developmental disabilities so often find themselves on the receiving end of services, but this group puts them on the giving side, fostering pride and thinking of others.
Participants meet at libraries, churches, schools and more to contribute to existing service projects or create new ones.
FRIENDSHIP CIRCLE
Teen volunteer FriendMakers and children with developmental disabilities engage in social skills, fitness, music, and after school and summer camp programs featuring arts, music, sports and more. (Pepper Pike)
Connecting teen volunteers and children with disabilities for almost 20 years, Friendship Circle (FC) of Cleveland’s mission is to spark friendship, connection and support for children of all abilities, their families and Jewish teens.
Program Director Rabbi Yosef Peysin, PhD, BCBA-D shares the vision
of a community elevated by realizing the special soul within each individual.
“We are able to meet a diverse range of disabilities,” Peysin says. “We try to be a place where kids are happier when they feel they have friends and kids are celebrated for who they are.”
Programs in arts, music, sports and superhero fun to after school activities for ages 3-18 and weekly social skills for ages 7-18, with additional offerings for adults and families.
From learning how to play musical instruments in the Friendship Circle (FC) Band to dance to
The band performs at City of Akron Mayor Shammas Malik swearing in ceremony at E.J. Thomas Hall with the Akron Symphony quartet.
Examples of activities include planting flowers and making placemats for the Geauga County Veteran Food Pantry, making bookmarks for library patrons, creating encouraging posters for students, and stuffing stockings for those in need.
For more information on RockAbility, Inside Circle, Project Kindness and other NPower Services programming, including a calendar of events and waiver/registration form to participate, visit npowerservices.com or email Weber at lori@npowerservices.com.
gymnastics to weekly and camp activities that incorporates in-person and some virtual opportunities.
Peysin says "FC Band is a platform for teens with and without disabilities to build community through music. The band gathers at Friendship Circle and community events to play original songs and covers focusing on the theme of friendship. Since its
HEARTS FOR MUSIC
Musicians from the youngest, age 5 to adults in their 60s, play together in an orchestra of instruments from iPads, cellos to violins. Hearts for Music Special Needs Orchestra provides an opportunity for all ages with special needs to come together to perform music, all types of genres, along with socialize together at any level and age.
"It was not so much about them creating beautiful music, but the music is a result of them bonding and playing
founding in 2022, the band has played multiple shows across Ohio, Los Angeles, and Charlotte, NC to rave reviews. The genre can be described as rock/ pop. Currently the band consists of Alan Vaytsman on piano and vocals, Josh Schoenbrun on percussion, Alex Waldbaum on vocals and "hype", and Yosef Peysin on acoustic guitar and vocals. Kevin Teplitzky is the musical director."
For more info, program listings, registration, pricing and more, visit friendscleveland.com. If someone would like to join the band, email Yosef@ friendscleveland.com
together," says Kitrael Chin, president and artistic director of Hearts for Music. They partner with local organizations and people who book them to perform for various venues or events.
They will be on the international stage in St. Peter's Square in Vatican City, Rome, Italy for a Jubilee of "Celebration of Persons with Disabilities" where they will join other international performers who have special needs.
For more information on how to get involved, email info@heartsformusic.org or visit heartsformusic.org.
PHOTO COURTESY OF PROJECT KINDNESS
PHOTO BY MITCH PHILLIPS
PHOTO COURTESY OF FRIENDSHIP CIRICLE
The Friendship Circle Band
Solo Caregiving
By Erin Sernoffsky
Four years before Rachel of Akron first met Tom, he was diagnosed with an autoimmune disease.
“He even said something like, ‘I like you and I want to see where this goes, but if you’re hesitant to get involved, it’s totally fine,’” Rachel recalls. “But I already knew I was smitten and that I’d be missing out on something beautiful and special if I didn’t take the risk.”
After two years of dating, they married in 2017 and although his symptoms were well-managed, two COVID infections and lasting long COVID symptoms took an enormous toll. Rachel found herself as her new husband’s sole caregiver —
managing his daily care, doctor appointments, hospital stays and therapy, all while maintaining a household and full-time job.
“Everything from modifying our routines to handling the day-to-day business of our lives, literally everything in my life felt like a major fire that had to be put out,” Rachel says. “The hardest part was that none of these things were ones I could send delegates to.”
Rachel knew she needed help but didn’t always know what to ask for. Her burnout was significant; however, as is often the case with burnout, it’s hard to recognize until it becomes overwhelming.
“I’m lucky because we had a lot of people offering to help,” Rachel recalls, but even so she struggled. “I absolutely burned out…and I didn’t even realize the depths of it until several months after his funeral. It’s hard and scary and painful, and even with support from friends and family, ultimately it’s something we do on our own. I wish I had sought professional counseling sooner than I did (it took me almost a full year), but it helped light a fire under me to find myself again.”
WHEN BREAKS ARE NEEDED
Rachel’s experience is shared by many solo caregivers, many of whom struggle to find tricks and tools to help them manage care, or who do not know what help is available to them. All caregivers face an enormous responsibility, whether they are caring for a child, aging parent, partner, or other family member or friend.
“People feel a sense of responsibility to their loved one. They want to give back to someone who has given to them, they want to be the one to help, but it is too much to do on your own,” says Tanisha Hill, BSN, RN, CCM, a clinical manager for Western Reserve Area Agency on Aging (WRAAA). Professionals like Hill help to link caregivers with the support they need to give their loved one the best possible quality of life.
Burnout is a very real, persistent threat. Knowing how to keep afloat daily, knowing where to look for help, and what help to ask for are all far more difficult than it seems from the outside.
“Adult daycare can be an incredible resource,” Hill says. “Whether it’s just a couple hours a week or full days, it gives a person a social outlet where they can play games, make friends, take part in art projects, or even just get out of the house and enjoy a meal or a change of scenery. And it gives the caregiver the chance to catch their breath. It’s so important to give them time to get their own responsibilities taken care of, or even get their hair done, relax and recharge a little bit.”
For slightly longer-term help, caregivers can look to respite care, where their loved one can stay in a nursing facility for a short period of time to give caregivers a chance to take care of their own
needs, travel, or rest for a weekend, week or sometimes longer.
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National Respite Locator Service is an excellent tool to help caregivers find the help they need.
Hill points out that these breaks, whether for the afternoon or a few days, can help restore some of the balance in a relationship and allow caregivers to return to their role as spouse, parent, or child rather than solely feeling like a caregiver.
“There are so many resources to help, from cleaning houses to managing care, to providing company and companionship,” Hill says. “A lot of people just don’t know where to start or what’s available to them.”
For those looking to support caregivers, offering to pick up groceries, water plants or help with laundry are all tangible ways to help that don’t add stress. Or simply dropping off a meal with no expectation of being invited to stay can go a long way to lightening the load.
Rachel advises well-intentioned family and friends to be specific when offering help.
“The caregiver may not know what to ask for, and I’m living proof that decision fatigue is a very real thing,” Rachel says. “When people would say, ‘How can I help?’ it felt like one more choice I had to make, one more problem I had to solve, one more thing that I had to manage.”
“The biggest thing, though, is to remember that you are both people, first and foremost. Anything that makes you feel human is valid and
important,” Rachel says. “For us, that looked like keeping as many of our couple-traditions as we could… It really helped us both remember that we were a couple first, and that the patient/caregiver roles were just a small part of that.”
ORGANIZING LIFE
Because single caregivers are the gatekeepers for everything, it’s especially important to develop personal strategies to stay organized. Small habits make a huge impact.
Downloading a voice record app or purchasing an inexpensive recorder to take to doctors or school appointments is an amazing way to make sure no important details are missed and give the caregiver the opportunity to revisit important conversations in a lowerstress environment.
High-tech tools like Skylight Calendars, a WiFi-connected digital display that organizes everything from appointments to meal plans and shopping lists, or video calls with devices like an Amazon Echo Show can be helpful. However, low-tech solutions are often just as effective.
Hill also recommends seeking help with some of the daily tasks that are easily forgotten or skipped, like medication management. She often recommends families use automatic pill dispensers or coordinate with companies that presort and package pills in individual packets to be opened at specific times of the day.
“Organization was my biggest friend, and also my biggest challenge,” Rachel says. “I had to make a dedicated ‘go bag’ with a notebook and calendar, and I carried it with me everywhere I went.”
This bag can be customized to contain a change of clothes, medication, emergency contact list, or even soothing fidgets, but being in the habit of carrying it everywhere eliminates the need to remember each individual item every time caregivers leave the house.
SEEKING HELP
Organization and life hacks are important, but no amount of scheduling will make the full-time job of caring for a loved one easy. Asking for help can feel very vulnerable for everyone involved, and even when caregivers want help, many don’t know what resources are available or what to ask for.
“So many of the people we work with feel like it’s their responsibility to care for a parent or a spouse on their own, that getting outside help is letting that person down. But really, getting help is best for everyone. Even something like providing more opportunities for socialization through day programs or companion visits is so important,” Hill says.
For single parents of children with disabilities, finding the right help can be terrifying and overwhelming. Start by looking for online support groups where other parents share what has worked, what resources they have found, and can answer direct questions.
Funding is available through the state of Ohio to help defray the costs of some day camps, after school care and other enrichment activities. The Ohio Department of Education
and the Department of Developmental Disabilities are great places to start looking to see what help is available.
Organizations like ARCNortheast Ohio can help walk parents through IEPs and advocate for services for their child.
For those caring for an adult, a case manager or care coordinator is an important advocate to have on the team.
WRAAA runs a no-cost Family Caregiver Support Program (FCSP) in which the caregiver is the client and works directly with a Care Coordinator who helps to determine what services are available, how to access them, and identify funding opportunities.
“It’s all about talking to the patient and the caregiver to find out what everyone needs and helping them connect to those specific services,” Hill says. “Because unless the caregiver is supported, the patient won’t get the care they need, as well. Everyone’s situation is different.”
For individuals caring for adults, Hill recommends reaching out to one of Ohio’s 12 area associations on aging as an important place to start, regardless of the age of the adult. These organizations are often a hub for finding out what help you qualify for, what programs are available, and getting paired with a professional to help coordinate care.
While in-home care such as therapy and nursing services, help with household chores, and even companionship is available, getting a loved one out of the house and into a social situation, when possible, is beneficial for everyone.
6 Sensory-Friendly Places in Ohio
By Ginny McCabe
If you want to go to a local attraction that offers an interactive learning experience, there are plenty of places to visit that offer hands-on, sensory inclusive experiences for kids, teens and adults. We offer six places in Ohio where people with special needs can enjoy attractions with the convenience of helpful extras, such as sensory bags, fidget toys, noise-canceling headphones, visual supports and more.
1
CHILDREN’S MUSEUM OF CLEVELAND
(CMC) offers a wide range of resources for neurodiverse guests. These resources are designed to support families before, during and after a visit.
Guests and their families who need special services can call 216-791-7114 and press ext. “0” after parking to arrange accommodations at the front desk, which is helpful for families who face challenges when waiting in line. The front desk can also provide a reentry sticker for guests who may need to leave and re-enter the museum.
Hattie Kotz, director of marketing and development at CMC, says everything at the museum is handson and interactive in a low-tech environment. It is all designed to support early childhood development, including cognitive, physical and social-emotional development,as well as building kids’ social skills.
CMC has a sensory-friendly room — available to all guests at all times — that features controlled lighting and sound, sensory support toys, and soft, comfortable seating.
Sensory support kits can be checked out for free at the museum’s front desk. The kits include fidget toys, noise-canceling headphones
and visual schedules, which support children with varying needs.
Additionally, guests may choose to make their own visual schedule with a template that includes picture cards. A social narrative complete with visual support will help familiarize children with the museum’s exhibits, rules and spaces.
"Kids learn through play, and having a welcoming, approachable space to spark that curiosity is so important to build a strong foundation for future learning, and to build that excitement and aspiration toward learning. Every child deserves that experience," Kotz says.
Visit cmcleveland.org
3
NATURE CENTER AT SHAKER LAKES
The Stearns Woodland Trail is a milelong trail that is partially accessible. It has a mix of paved and natural segments, including dirt, bridges and boardwalks. The trail begins at the Nature Center’s Rusty Knight Woodland Garden and can also be accessed from the Lavelle Family Amphitheater and the south side of the parking lot. About a quarter mile of the trail is accessible.
A second trail, the quarter-mile All Peoples’ Trail, is fully ADA accessible and can accommodate people of all needs and abilities, including guests who have a stroller, wheelchair or an adapted walking device. Both trails are open to the public every day, from dawn to dusk.
“The All Peoples’ Trail is a great place for families that have young kids with strollers, but also for those with special needs,” says Tania Younkin, director of marketing and community engagement at the Nature Center at Shaker Lakes.
Another fully accessible attraction on-site is Jimmy’s Treehouse, which is open anytime the Nature Center is open. The Treehouse deck is open from dawn to dusk.
“Nature in and of itself is a sensoryfriendly activity,” Younkin says. “Through that, people can be out in nature, experiencing the sounds of the birds or the smell of different flora and fauna. It’s healthy for everyone, especially to someone who might get overwhelmed by a lot of loud sounds. It’s a very peaceful and natural setting.”
Visit shakerlakes.org
PLAYHOUSE SQUARE IN CLEVELAND
It offers sensory-friendly theater experiences that offer the following: lower sound levels, especially for startling or louder sounds; guests are free to talk, leave their seats, and move about freely during the performance; house lights in the theater are left on but turned down low throughout the performance; and designated calming areas staffed by volunteer specialists are available for guests.
LEGOLAND DISCOVERY CENTER
Columbus at Easton Town Center is a 36,000-sq.-ft. indoor play space with interactive games, play areas, rides, hands-on building challenges and a 4D movie theater that are all about Legos.
“We definitely care deeply about creating magical and inclusive experiences here,” says Cheryl Ryan, marketing manager.
Other hands-on build areas for young children include “Duplo Farm,” “Lego City” and “Lego Friends.” The two rides, “Merlin’s Apprentice” and “Kingdom Quest,” are wheelchair transferrable.
In addition, “Ohio Miniland” is a display room of Ohio, where guests will discover landmarks from Cleveland, Cincinnati and Columbus all rendered in Lego bricks.
Also, it offers no cost Carer tickets for caregivers accompanying guests to the attraction. Tickets are available on a walk-up basis at the admissions counter with a valid caregiver ID.
It is designed primarily for families with children ages 3 to 10. There are wide aisles for wheelchair accessibility, and several accessible Lego build tables. There are also movies without dialogue, and some of the 4D movies are more action and gesture based. The attraction is located on two floors, and guest elevators are available. The center also recently launched a Braille Brick activity that is run by the Master Model Builders.
For the Accessibility Guide visit legolanddiscoverycenter.com/columbus
Since launching a sensoryfriendly initiative in 2014, Playhouse Square has 18 sensoryfriendly performances and partnered with the Cuyahoga County Board of Developmental Disabilities and Dr. Thomas Kelbley to create a sensoryfriendly video series that explores different ways to relax and manage stress. Cuyahoga DD also provides volunteers for all of Playhouse Square’s shows and assists with training all of the theater’s “Red Coat” ushers.
Playhouse Square also hosts an annual Family Theater Day, which features ticketed performances, along with other free-for-all programming. On Family Theater Day, a sensory room is equipped with fidget toys, noise-canceling headphones, bean bag chairs and more.
The Mimi Ohio Theatre also has a sensory-friendly room called the Sweeney Room, designed to be a quiet, calming area where guests can go to relax. The Sweeney Room has dim lighting, a pop-up tent, bean bag chairs, fidget toys, hearing protection, and gentle music playing in the background.
(GCA), a KultureCity certified sensory inclusive organization, offers a number of resources to guests with special needs, such as sensory bags available upon request that are outfitted with noisecanceling headphones, fidget tools, and visual cue cards.
“KultureCity works to promote and accommodate a positive experience for guests with sensory differences,” says Stephanie White, general manager at GCA.
Other resources include a KultureCity “Social Story” and a “Aquarium Sensory Field Guide.” Both of these resources are helpful to guests when planning a trip, and they can be used during a visit.
GCA also partners with the Cuyahoga DD, and it is part of the “ALL means ALL” initiative, which ensures the aquarium is welcoming to people of all abilities and all backgrounds, and provides opportunities for meaningful inclusion.
The aquarium offers daily activities that are accessible for everyone, ranging from Animal Encounters and Discovery Carts to a Sharks and Scuba Underwater Q&A. These activities provide ways to get up close to animals and offer guests an interactive experience.
“The galleries have an immersive feel, and our animal habitats were designed to be viewable from multiple angles, and also multiple heights. So there are lower viewing panels, and there are several underwater walkways with underwater viewing,” White says.
The sights and sounds of GCA are welcoming and soothing. In addition, several times a year the aquarium offers “Sensory Hour,” during which it opens early, capacity is limited, and noises are reduced.
Located on the West Bank of the Flats along the Cuyahoga River, GCA’s “Aquarium Sensory Field Guide” incorporates sound, smell, touch, visual, lighting and proprioception in many of the aquarium’s exhibition and gallery areas, as well as in public spaces. The parking lot is located close to the building and the aquarium itself is a one-level attraction. Wheelchairs can be reserved.
Visit greaterclevelandaquarium.com/ accessibility
6
CENTER OF SCIENCE AND INDUSTRY
(COSI) in Columbus has combined science learning and fun since 1964 with over 300 hands-on exhibits, a planetarium — touted as the largest planetarium in Ohio — a National Geographic Giant Screen Theater, live shows and more.
“One of the mottos we go by is ‘Science is for Everyone.’ We truly mean that and it’s something we strive toward, trying to make science accessible no matter who comes to participate or to learn,” says Katherine Davis, manager of special education experiences and strategies at COSI.
“For our sensory focused visitors, we are building in a couple different realms,” she says. “We do offer sensory bags that include things like noise-canceling headphones, fidgets, liquid timers and sunglasses. We have visual schedules that provide icons of all the activities that are within COSI, so they can actually lay out and create a visual, step-by-step of what they are going to do for the day.”
The sensory bags are a free resource that can be checked out with an ID and returned at the end of a visit.
PHOTO
Another resource is a program called Sensory Space, which creates quiet spaces so individuals can have a break, but still continue to participate in science and the various activities that they are doing as part of their day. There is an individual Sensory Space near the Atrium desk. COSI has also incorporated a Sensory Tent, which is a moveable space that can be used at festivals and other community events. On high capacity days, COSI can also create additional temporary Sensory Spaces on site.
COSI recently updated its sensory map to provide a better understanding of the center’s high-traffic areas, low-traffic areas, and spaces that are quieter.
Davis says COSI is also focusing on being sensory-friendly at off-site events, too. The hope is that everyone can participate without getting overwhelmed.
"It’s being able to show individuals of all abilities and all backgrounds that they have a place in science." she says. “We want to be able to take out the barriers and create spaces where they can not only experience science, but there’s opportunities to see others like themselves within a science world, and even have opportunities to join the science world.”
Visit cosi.org
INCLUSIVE EDUCATION FOR PRESCHOOLERS
Inclusion in education aims to provide equal opportunities for all students, regardless of background or ability, to participate, contribute and succeed. This involves removing barriers that hinder full engagement in the learning process.
In an inclusive early childhood classroom, participation means children of all abilities playing and learning together. Teachers use varied instructional approaches, such as visual aids, hands-on activities, and verbal instructions, to ensure each child can access and engage with the curriculum.
At Step Forward, Ohio’s largest Head Start provider, 10 percent of enrollment slots are reserved for children with disabilities, ensuring equal access to comprehensive services.
“Diversified education in an inclusive environment involves tailoring our teaching methods to accommodate different learning styles and abilities,” says Samara Townsend, a Step Forward
teacher. “Participation includes active engagement in activities, collaboration with peers, and involvement in the decision-making process.”
Jayvonna Oliver and Darryl James’ son, Jayceon, attends Step Forward’s William Patrick Day Early Learning Center. Jayceon thrives at school, engaging with his peers and teachers. He relies on mobility aids, provided by Head Start.
According to Step Forward, such
inclusivity has boosted Jayceon’s selfesteem, preparing him for his transition to kindergarten.
“I advise parents to actively engage with their child’s teachers,” explains Renata Turner, Step Forward’s Early Childhood Inclusion Coordinator.
“Their relationship with educators is a partnership. By working closely with schools, parents can ensure that their child’s learning needs are met.”
Typical barriers in early education classrooms for children with disabilities can include a lack of appropriate resources and support, inaccessible physical environments, and attitudes of educators and peers.
“Overcoming these barriers requires a collaborative effort between parents, educators, and support staff, setting a foundational example of acceptance and diversity for children,” Turner says. “It promotes empathy, understanding, and respect among peers, preparing them for a more inclusive society.”
PHOTO COURTESY OF
Darryl James and Jayvonna Oliver with their son Jayceon
THE APPLE DOESN’T FALL FAR FROM THE TREE
After your child’s diagnosis, it all sounds too familiar; what to do if you suspect a family connection.
By Lorilynn Wolf, Communications Director, Connecting for Kids
So many times when a child gets a diagnosis, the parent begins researching the topic and they begin to see themselves. Whether it is ADHD, autism spectrum disorder (ASD), a learning disability, mental health issue, sensory processing disorder or another condition, the more they look into signs, symptoms and outcomes, the more they begin to realize that they, too, may share the same or similar diagnosis as their child.
When the parent was young, maybe there was not a name for what they experienced. Maybe their family never explored medical interventions, therapies or a formal diagnosis. Soon, they start to wonder how they can best help themselves and their child.
HERE ARE FOUR RECOMMENDED STEPS:
1. Find a Professional
To support a suspected or confirmed diagnosis, seek out the help of a therapist or mental health provider.
2. Attend an Adult Support Group
This is a great way to connect and interact with others who share a similar journey. There are groups such as Connecting for Kids, National Alliance on Mental Illness (NAMI), Courage to Caregivers and many other local or national organizations that offer adult support groups, either in-person or virtually.
3. Do Your Research
To find available resources, the libraries offer a plethora of great materials on health topics, along with online sources such as specific groups dedicated to the diagnosis who can share information.
4. Attend a Program
You will learn strategies to prioritize self-care, manage stress and establish healthy boundaries.
Visit connectingforkids.org/workshops.
COLLEGE-BOUND STUDENTS HAVE INCLUSIVE PROGRAM OPTIONS
College can seem out of reach for high school graduates with an intellectual disability (ID) or developmental disabilities (DD). However, legislation and centers supporting inclusive college programs include:
• Higher Education Opportunity Act: approves funds to develop college programs for students with ID
• Think College National Coordinating Center: developed national standards, quality indicators and benchmarks for inclusive higher education programs
• The Workforce Innovation and Opportunity Act of 2014
Cuyahoga County students with ID/ DD have a college program to call their own. The Reciprocal Inclusion Student Experience (RISE) program is at Cleveland State University (CSU). RISE is a twoto four-year comprehensive transition experience that helps students with ID/ DD earn industry-recognized certificates. Developed through a partnership between CSU and Cuyahoga DD, RISE
admitted its first students in fall 2023. The students can audit typical college courses and typical continuing education courses. They can also take courses on self-advocacy, Activities of Daily Living and Instrumental Activities of Daily Living (ADL/IADL), career exploration, and career development.
In the spring 2024 semester, all RISE students had paid work internships on campus. In addition to work and school,
Looking for more program support options?
the students may participate in extracurricular activities. These may include registered student organizations, student government, club sports, campus events, and fraternities and sororities. Also, the students may choose to live on campus.
Students in the program, according to the Cuyahoga Board of DD, say their peers in the program were “the first group of friends (they) have had since high school.”
RISE partners with the Employment Collaborative of Cuyahoga County to ensure that students in the program will have greater access to employment around their community.
Please search RISE at csuohio.edu or visit csuohio.edu/rise/reciprocalinclusive-student-experience-program
Ohio College2Careers — The program partners with colleges and universities to help support students with disabilities. ood.ohio.gov or visit highered.ohio.gov
Ohio’s Statewide Consortium — The programs provide access to inclusive college classes, work experiences, social activities, and independent living & self-determination instruction. ohioconsortium.wixsite.com/osconline
CSU RISE Group with Dr. Schaefer
Advocacy ALTERNATIVE EDUCATION FOR CHILDREN WITH COMPLEX NEEDS
By Tina Moreno, M.A. CCC-SLP, ATP, Speech Language Pathologist and Assistive Technology Professional, LeafBridge at UCP of Greater Cleveland
Six-year-old Mason Michels’ family knew he needed extra supports to succeed in the classroom. He requires a high degree of specialization due to his complex needs. Alternative education can be designed to meet the needs of students who may not be successful in traditional schools.
Parents who are concerned about their child’s education should have open discussions with their child’s school district and connect with their school’s parent mentor ( if one is provided) if they believe that alternative education might be beneficial for their child. The school district usually pays for the alternative education program. In order to change a student’s placement, the parents and the school district have to agree that it meets the student’s needs. Students typically attend public school in their home school district, near where they live with peers. Students who attend alternative education travel to another location to receive specialized education services with students from other districts.
technology, movement, positioning, fine and gross motor, sensory, academic, vision, social/emotional well-being, and daily care.
Alternative education also helped Mason find his voice, thanks to the highly trained specialists who are part of the everyday classroom experience, LeafBridge’s AAC (augmentative and alternative communication) Lending Library allowed Mason to trial other communication systems, different from the touch-based AAC device that had been causing him much frustration. His team found that an eye gaze device worked best for Mason. His team all worked together to learn the new system and ensure consistent access to the device.
“It felt like a window into his thoughts was finally opened, bringing a new level of connection and understanding to our lives,” said Mason’s mom, Allison.
For example, UCP of Greater Cleveland’s LeafBridge Alternative Education (Alt Ed) Program was well-suited to address Mason’s therapeutic and educational needs with highly trained staff to support complex needs related to communication, assistive
UCP of Greater Cleveland’s LeafBridge Alternative Education (Alt Ed) Program empowers children with complex disabilities using a highly individualized, trans-disciplinary approach. To learn more, contact Celia Chesnick, Children and Family Services Manager, at cchesnick@ucpcleveland.org or 216-791-8363 ext. 1260.
The Michel family
People to Know
By Lindsey Geiss
SPREADING JOY THROUGH ART
Planet Joy Studio
The name Planet Joy suggests an otherworldly realm of happiness where one might be transported. While this collaborative working art studio is a place on Earth, Planet Joy (689 W. Liberty St. in Medina) is indeed transformative, enhancing the lives of artists with developmental differences while sharing the beauty of the individuals with the world through their art.
Just walk through its major exhibit of 27 bright, bold pieces at the 1,500-square-foot Summa Health Gallery in Akron, and one will see firsthand the art’s healing powers for patients, visitors and staff alike.
Debbie ApplePresser, of Cleveland Heights, has been studio manager since Planet Joy opened in 2019.
“Someone said to me, ‘Did you ask them to create art that was happy?’ I said, ‘Absolutely not; this is what comes out of them!’ The beauty of it is their choices,” she shares.
Nine dedicated artists in their 30s through 60s work at Planet Joy each week. They are encouraged — and free — to create and do what speaks to them on their own schedule. On Wednesdays and Thursdays, the room is abuzz with creative chatter, movement of supplies, music, laughter and even dance.
The studio encourages adults with developmental differences to explore their imagination and creativity through the arts. With the
teachings and direction of other professional artists, Planet Joy artists improve their skills, knowledge and ability to express themselves with various mediums, including painting, drawing, silk screening, art installation and more.
While all nine artists collaborate on some projects, like a large wall mural at the Ohio Department of Developmental Disabilities headquarters, ApplePresser notes the studio nurtures individual interests, styles and strengths, highlighting Carl Roberts’ circles, Maureen Conley’s spotted giraffes, Anthony Burkett’s mythical creatures, and Jason Stanton’s silk screening and transfer drawings.
While ApplePresser provides instruction on the use of materials
Artists work at Planet Joy Studio.
and specific techniques, the artists’ work is their own, and they maintain the studio themselves.
“I encourage them to help each other and ask each other questions,” she says. “I guide, but they drive [the creative process].”
She has support from a part-time volunteer assistant, but “the hope is to be open every day with support from individuals who are trained in art, know their way around a studio and are comfortable working with a lot of different materials and personalities.”
Moreover, the artists are paid for their studio time and earn 20 percent commission on work sold, with other profits supporting the program.
“What art has done for them is just beautiful,” ApplePresser says. “It has strengthened confidence and independence. The money is validating.”
Additionally, ApplePresser brings in visiting artists to introduce Planet Joy artists to people doing art for a living. She also draws on her own experience as a lifelong artist, from opening and running one of the first art galleries in Cleveland’s Little Italy to working as an artist/educator at the Cleveland Museum of Art.
“I want them to learn vocabulary, gain insight and speak to the artists, and they do,” she says. “The conversations are great.”
Planet Joy is also part of Intervention for Peace, a family-owned-andoperated agency providing services in Medina County to individuals with developmental disabilities since 1994 through the Individual Options Waiver Program. In the day program, Peaceworks partners with local Medina
businesses to offer gainful employment opportunities. In addition to Planet Joy, Peaceworks programs include Spokes Café (a partnership with Cool Beans Café) and the Sprouts of Peace Community Garden horticulture vocational program.
Artwork is available for sale online and via regular shows and exhibits around the community, in addition to commissioned pieces. Prices typically range from $70 to $135 for larger work. The Botanical Gardens will feature Planet Joy art in September 2024. Wall art, umbrellas, clothing, baby blankets, tea towels, table runners and more adorn many homes and businesses, from law firms to salons.
ApplePresser often hears purchasers say, “This piece speaks to me, and I have to have it.”
“This is a gift, not a job,” she says. “I once heard an artist say, ‘You know it’s us and them in this world,’ and I thought, ‘I am blurring that line.’ What an opportunity this is for the public to meet and become more educated about this population.”
Interested artists may call 330725-1298 to arrange an interview. Pending invitation, artists work at the studio on a trial basis initially. While all are welcome, current Planet Joy artists are independently mobile and communicative. Transportation is available for Medina County residents. For more information on Planet Joy and Peaceworks, including employment opportunities, visit peaceworksteam.com or contact Day Program (Peaceworks) Manager Rachel Green at rgreen@ifpeace.com or 330-725-1298.
HEAR from the ARTISTS
“Making and selling my art work for others makes me proud. Planet Joy Studio is a happy place to work. Everyone compliments each other on how well they are doing.”
— Maureen Conley
“Creating art makes me feel good. I like to give back to people through my art. My brother is a graphic designer, my cousin and mom are illustrators, and I took on their gifts also.”
— Anthony Burkett
“Planet Joy makes me happy and more calm… When I make a piece of art I feel confident. When I finish a piece of art I feel proud. I look forward to coming to Planet Joy every week.”
— Gary Fromm
“I love to paint best. Painting makes me happy and makes me smile. My love for Planet Joy starts with my instructor, and she encourages me to do my best.”
— Justin Glas
“I have learned from Debbie how to draw and paint. Making art at Planet Joy makes me happy and proud.”
— Gina Montellanico
“Creating art makes me happy. My mom, dad, sister and brother inspire me to create the art I do. Debbie encourages me to do the art I do and I like being in Planet Joy.”
— Ben Petras
“It makes me feel good to work here. I have learned to draw elephants, giraffes and birds, and it feels good to get my work done.”
— Carl Roberts
“Creating makes me feel perfect and having great ideas… Good painters inspire me, like Picasso. ”
— Jason Stanton
“I love art. Planet Joy makes me happy… I learned a lot of different media techniques.”
— Brandi Villoni
Planet Joy artists at wall mural at the Ohio Department of Developmental Disabilities headquarters in Columbus, Ohio.
People to Know
MEET TOBY BRESKY
Lifelong Advocate Shares Advice
Toby Bresky, of Cleveland Heights, may credit other special needs parents for forging a path, but she walked — or, rather, marched — so others can run.
Bresky’s daughter Jill was born in 1975, the year the Individuals with Disabilities Act (IDEA), formerly called Public Law 94-142 or the Education for all Handicapped Children Act, was signed to ensure the rights of students with disabilities to a free, appropriate public education in the least restrictive environment for their individual needs. It also required Individualized Education Programs, or IEPs, for each child.
the house at age 22, treat this child the same way, and save as you would for college,” Bresky suggests.
“The county wait list was long, so after receiving advice from people with connections to the county board, we got four families together to purchase a home, then sought county funding for staff."
“There were parents who were leaders and assertive to bring that revolution about, but [change] doesn’t happen just because you pass a law,” she says. "Sometimes you say the right thing and sometimes you don’t, but you have to take the chance.”
Bresky highlights five important points for parents to consider:
“Do not define your child based on the disability,” she advises. “A label doesn’t tell you the whole picture." Focus on how the child is functioning. Focus on things they like to do and build on that."
While Jill has “a rare form of microcephaly and low IQ by testing standards,” Bresky describes her as “sensitive” with “street smarts.” “She picks up on a lot and has a busy, active social life. She loves clothes and money and had a boyfriend. She is good at picking tall, good looking men she could boss around,” she quips. “She likes dancing. She is a good worker.”
“A diagnosis doesn’t mean anything in terms of functioning,” she adds.
2024-25
Engage in early intervention “Make sure your child has occupational therapy (OT), physical therapy (PT) and speech therapy if they need it — the earlier the better,” Bresky advises. “I was very fortunate I kept meeting the right people and she was in the right school," she adds. She was integrated for gym, music and lunch and was given jobs like taking attendance to the office, and she worked with honor school students who volunteered in the special education class at Canterbury School in Cleveland Heights/University Heights.”
“Find the right fit for your child and family,” Bresky says. “It may not be the same as others [and that’s okay]." It has to be right for you. It’s wonderful that people want their kids to work in the community. It was my goal, but it wasn’t good for my daughter… Everybody is different. Sometimes the brightest kids don’t achieve.
“The main thing is that [Jill] is happy and she has friends, people to eat lunch with who are like her. For my daughter, activities are very important. She can do puzzles, but she can’t read. She thinks an activity center is like a nursing home, so I plan outings to parks, Synagogue, bingo and free concerts. She and her housemates have a car at the house.
We got funding for a car in the agency’s name with insurance, and the staff drives them. Jill enjoys these activities and visiting family, but after a while she is ready to go home.”
Plan for housing
“If you expect a typical child to leave
When choosing housemates for your child, Bresky says not to look solely at individuals with the same diagnosis or same level of skill or independence. “Jill’s friends have Downs, autism and are generally less social, but they work well together. What matters most is families who can get along and their primary goal is the child."
Seek financial advice and research options
Bresky recommends looking into a STABLE account, which, according to stableaccount.com, is an investment account that allows eligible individuals with disabilities to save and invest money without losing eligibility for certain public benefits programs like Medicaid, Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).
“A big thing to protect is health insurance,” Bresky says. “Also, understand waivers.”
Bresky also suggests that parents consult with a special needs attorney/ law firm about trust fund options, contracts or other questions.
No matter how much experience one acquires or how much planning is in place, fears can still creep up. Since her husband passed away and she is approaching her 85th birthday, Bresky admits, “I’m scared of what’s going to happen, but I try to get others more involved in activities.” While her oldest daughter lives out of state with five children of her own, Bresky draws on the network she has built over the years and is reassured that Jill has secure living arrangements. She is also working with LiveSpecial on exploring options for developing a volunteer system for adults with developmental disabilities without family in town.
Toby Bresky of Cleveland Heights with her daughter Jill.
ART IS POSSIBLE FOR ARTIST
Xavier Sledge
By Jeannie Fleming-Gifford
When Xavier Sledge was 4 years old, his mother, April, noticed his interest in shapes and colors. April quickly leaned into these interests and Xavier’s artistic talents as a way to support his development and growth. With support (including Mr. Antoine Pastor, a high school art teacher and Mrs. Beard, an aide) Xavier, 19 and a University of Akron student, has blossomed into a young artist who is now sharing his work professionally, including with Art Possible Ohio. We talked to Xavier and his mother, April about his work.
How did Xavier first become interested in the arts?
Xavier’s first arts explorations were a result of occupational and physical therapy sessions. Xavier was asked to draw simple shapes. April quickly noticed that Xavier saw other things in those shapes and loved adding color.
Tell us more about Xavier the artist. Xavier loves creating with pastels, pencil and, most recently, acrylic paints. From landscapes to portraits, Xavier creates works that have special meaning to him. His favorite piece he created is a pencil drawing that includes 174 small pieces of paper, each shaded and coming together to create a portrait of sports legend LeBron James .
How has Xavier made connections through his artistic journey?
During his high school years, Xavier’s art drew attention from outside the school’s walls. Through connections with organizations such as the Autism Society of Greater Akron, where one of the Society’s marketing pieces includes
Xavier’s art, selected through a contest. April then saw an ad on social media about Art Possible Ohio and submitted one of Xavier’s favorite pieces of art, the one of LeBron James.
What benefits have you observed in Xavier since he started participating in the arts and with Art Possible?
April and Xavier agree that the visual arts has benefitted Xavier by making him more confident which has inspired him to do more art and explore various mediums. As Xavier’s works have grown in number, so has his community connections. Xavier and April shared that they have received kind emails from individuals — even from out of state — after seeing Xavier’s art displayed. Through the visual arts, Xavier has met many individuals who continue to help identify new opportunities for Xavier to display and sell his work. And, Art Possible has become a platform for Xavier to sell his work, earning some dollars while creating in mediums he loves. Visit artpossibleohio.org
Xavier and April Stephens
When the ‘Why’ is Answered
Getting to a final diagnosis can be difficult; Scott Gohn and Elaine Eisner talk about their journey to getting a diagnosis after years of searching.
By Angela Gartner • Photography by Elaine Eisner
Scott Gohn and Elaine Eisner started Livespecial.com in conjunction with National Council of Jewish Women/ Cleveland (NCJW/CLE), a signature project serving Northeast Ohio, because they wanted to pull together resources since their daughter Alana was so unique.
Alana Gohn, 15, of Solon, was initially diagnosed with microcephaly as an infant, but there were still missing pieces of Alana’s development that didn’t match completely.
“Because we didn’t have that (complete) diagnosis, it was difficult to figure out the (right) support,” Alana’s parents say.
After years of searching to get answers, Gohn and Eisner were able to receive a diagnosis of HUWE1-related neurodevelopmental disorder after years of meetings and tests with a geneticist from the Cleveland Clinic.
According to HUWE1.org, the HUWE1 gene is located on the X chromosome, which impacts cells throughout the body. Research indicates it is associated with issues such as brain development, intellectual disability and other health issues.
Eisner says it’s comforting to have a diagnosis.
“It’s helpful and a little peace of mind,” Eisner says. “We’ve uncovered every stone and have come up with the ‘why.’ Now we know we haven’t missed some big thing that could have helped her differently.”
The diagnosis provides the answer, but it doesn’t necessarily change the daily care of their daughter Alana.
Gohn and Eisner say that it does provide data-sharing, therapeutic research for gene therapy and connections to a group of other families who have kids with HUWE1 genetic conditions.
“What has changed is that it gives us a community of individuals like Alana and families that we can bounce ideas off of and share information about what works for your kiddo,” Gohn says. “It gives us the ability to try [a support] because it might be working for someone else.
“We are still going to keep advocating for her, and help drive her to be the best Alana she is going to be,” Gohn adds.
“It helped us to know that you are not alone in the process and not alone in your journey,” Eisner says, encouraging those who are still struggling with their search to not give up.
“Science will catch up if your kid doesn’t fit into a (certain) box,” Eisner says.
PHOTO ON RIGHT: Alana, 15, at her family's Solon home this summer.
PHOTOS ON LEFT: Alana throughout the years, also, The Superhero Project poster "Amazing Adventurous Alana" designed by Marietta Delene. It was created based on her and her family's direction that showcases a superhero alter-ego.
Achievement Centers for Children
Achievement Centers for Children has served the community since 1940 with a mission of empowering children and adults with disabilities to achieve their greatest potential through holistic and family-focused services. They are home to Camp Cheerful, Ohio’s first recreational camp for those with disabilities, which today provides year-round camp programs. Their services also encompass an Autism School and other educational programs, Adult Services, Family Support, Therapy, and Recreation (including Adapted Sports and Therapeutic Horsemanship). To learn more, call 216-292-9700 or visit achievementcenters.org.
Autism Society of Greater Akron
Special Advertiser Listings
Cleveland Hearing & Speech Center
For more than 100 years, CHSC has provided speech-language, hearing, language interpreting and deaf services. It advocates for equal access to information and communication and values all individuals’ language choices equally. Its vision is a community where every person can communicate effectively. chsc.org
Community Fund Management Foundation
Beck Center for the Arts
Each participant in Beck Center’s Creative Arts Therapies program receives attention that is individualized, with personallydesigned goals tailored to meet their needs. Staffed by board certified arts therapists and professional adapted instructors, Beck Center’s program is the first of its kind in the state of Ohio. 216-424-7634, beckcenter.org/ education/creative-arts-therapies
Community Fund Management Foundation (dba Community Fund Ohio) is a nonprofit that serves Ohio residents with disabilities. It was founded in 1993 and is one of the oldest and largest pooled trusts in the country. serves as the nonprofit trust advisor for more than 4,000 Ohio residents with disabilities who are Pooled Medicaid Payback Trust or third-party Master Trust. Community Fund has partnerships with Jewish Federation of Cleveland, The Arc of Ohio, Hattie Larlham, and ADD. Community Fund also makes benefit of Ohio residents and Ohio nonprofits that serve individuals with disabilities. Additionally, it provides educational presentations to parent groups and professional organizations. Its trust documents and grant applications can be found on its website: communityfundohio.org.
Cleveland Metroparks
Cleveland Metroparks spans 25,000 acres across Northeast Ohio including 18 reservations, nine golf courses, dining and retail venues, and nationally acclaimed Cleveland Metroparks Zoo. The Park District offers thousands of
education and recreation programs and events each year, helping to create connections to nature and promote conservation and sustainability. Learn more at clevelandmetroparks.com.
Connecting for Kids
Connecting for Kids provides resources, support and community to families in Northeast Ohio who have concerns about their child. It supports families who have children with mental health concerns, developmental delays and disabilities, as well as those facing major life changes. It offers programs, Resource Fairs and a Family Resource Specialist (FRS) Program. Programs include support groups for adults, presentations by professionals, and hands-on programs that caregivers attend with their child. The FRS program offers a CFK staff member who meets with families and assists them in navigating resources. All programs are offered free to families. connectingforkids.org
Cuyahoga County Board of Developmental Disabilities
The Cuyahoga County Board of Developmental Disabilities proudly supports and empowers people with developmental disabilities of all ages to live, learn, work and play in the community. For more information on services and resources, call 216-2418230 or visit cuyahogabdd.org.
1,600 PLUS PROVIDERS AND RESOURCES IN NORTHEAST OHIO.
The
Down Syndrome Association of Northeast Ohio
DSANEO provides support, education and advocacy for individuals with Down syndrome, their families and communities. DSANEO is the primary resource for families and communities regarding Down syndrome, where all people with Down syndrome are accepted, included and empowered. DSANEO supports individuals with Down syndrome through their lifetime with family support programs, education enrichment for toddlers to teens, life skills classes, social programs, medical outreach and advocacy. DSANEO supports more than 1,100 individuals with Down syndrome and their families throughout 16 Northeast Ohio counties. 216-447-8763, dsaneo.org
Eisner Gohn Group
Eisner Gohn Group is a leading resource for life insurance, long term care insurance and long term disability insurance. Its team creates a comprehensive insurance plan for families and businesses. eisnergohngroup.com
Fine Arts Association
Guided by its values of equity, integrity, growth and community, The Fine Arts Association (FAA) seeks to create and discover beauty to foster a community empowered by the arts. FAA offers arts education programming in dance, music, theatre, visual arts and creative arts therapies for all ages and ability levels. In addition to arts education, The FAA Performance Department creates opportunities for members of the community to be involved in every aspect of the theatrical experience. From family musicals to performances by professional musicians, the dynamic performance season has something for everyone. 440-951-7500, fineartsassociation.org
health, jaw growth, and dental development. Through minimally invasive dentistry, they provide drill-free cavity treatments, such as laser dentistry, SDF, SMART fillings, and Hall crowns. In-office sedation dentistry is also available. Their passionate team partners with caregivers to make dental visits educational and fun for all children. They are accepting new patients 12 years and younger. Call 330425-1885 or visit gbpdsmiles.com
I am Boundless
For more than 40 years, I Am Boundless, a statewide nonprofit, has provided people with intellectual and developmental disabilities and behavioral health challenges the freedom and opportunity to live boundless lives. It serves all ages and abilities in autism services, primary care and dental appointments, job training, counseling, and residential support. It proudly provides person-centered care that celebrates each individual and encourages them to become active participants in the communities where they live, work and play. To learn more about how Boundless can help you or your loved ones, visit iamboundless.org.
Insight Academy
Insight is a multi-service organization aimed at creating socially significant change. Taking a unique behavior analytic approach to therapy, its evidence-based techniques and data-driven methodology target the individual and support their behavioral, emotional, social and academic development. Insight’s collaborative approach offers home, in-school, and center-based programming as well as an early intervention program for autism and a psychiatric clinic for the diagnosis and treatment of mental health disorders. Its tailored programs are administered by a dedicated and experienced team of licensed professionals and support staff who care about sustainable outcomes and making an impact in peoples’ lives, both locally and globally. insightohio.com
Julie Billiart
Schools
With campuses in Akron, Brecksville, Lyndhurst, and Westlake, this network of K-8 private, Catholic schools educates and empowers children with learning and social differences. Students with mild to moderate autism, ADHD, dyslexia, anxiety and other learning differences thrive with JB’s small class sizes, onsite therapies, and direct intervention. Visit the website to apply, register for an open house, or learn more about its curriculum. juliebilliartschools.org
Jacob’s Ladder
Jacob’s Ladder Fitness is a Christian organization dedicated to serving the special needs community through fitness, fellowship and healthy lifestyle education. The organization offers a variety of in-person fitness and basic boxing classes in Northeast Ohio, as well as Zoom exercise classes. Jacob’s Ladder Fitness encourages everyone, especially those with diverse disabilities, to become active and fit. The team at Jacob’s Ladder Fitness includes passionate volunteers and certified fitness trainers, some of whom are from the disability community. These individuals exemplify the power of fitness and the spirit of service. To learn more, email jacobsladderfitness@gmail. com or text Tony at 440- 225-2365.
Lake County Board of DD/Deepwood
The mission of the Lake County Board of Developmental Disabilities/Deepwood is to empower individuals with developmental disabilities to engage in activities that enrich their lives and contribute to their community. In the ever-changing landscape of federal and state regulations, the LCBDD’s overriding vision remains constant: to offer Lake County citizens the highest-quality, most-inclusive, collaborative, and person-centered services and supports available within resources. Working closely with other agencies and community partners, the LCBDD helps individuals and their families identify and receive services needed for a safe, healthy and fulfilling life. Learn more at lakebdd.org or follow @DeepwoodLakeDD on social media.
Medina County Board of Developmental Disabilities
The Medina County Board of Developmental Disabilities is the community resource responsible for connecting, coordinating and funding services for individuals of all ages with developmental disabilities. It helps with everything from early intervention and education opportunities for children to employment and inclusive living for adults so they can live, learn, work and socialize in the community. mcbdd.org
Milestones Autism Resources
Milestones Autism Resources improves the lives of autistic individuals, families, caregivers and professionals by educating, coaching and connecting them to resources. Providing an annual autism conference, a free helpdesk, community training, and a website with more than 1,500 resources, Milestones is here to support individuals at every age, stage and ability. Visit milestones.org or visit the Milestones free autism Helpdesk at milestones.org/helpdesk. To connect with a Spanish speaker, call 216-464-7600 ext. 5.
Miller’s
Miller’s offers custom wheelchair, respiratory, and home accessibility solutions throughout NE and Central Ohio with offices in Akron, Canton, Cleveland, Youngstown, and Columbus. Their core purpose is that Miller's provides personalized solutions to improve the quality of life for every client they serve. They are proud to celebrate their 75th Anniversary in 2024 having served Ohio since 1949. Their difference is the expertise and compassion of their staff. They all stand ready to assist you with product selection, custom solutions, and funding knowledge expertise. Miller’s provides both power and manual wheelchairs, CPAPs, seat lift chairs, stair lifts, wheelchair ramps, and other home accessibility equipment. Services unique to Miller’s include a repair shop and on-road service from every one of our locations. Learn more at millers.com.
Step Forward
As the state’s designated anti-poverty agency for Cuyahoga County, Step Forward is tasked and trusted to lead the fight on the ground against poverty in our community. Step Forward helps low-income individuals and families address immediate needs and build long-term skills to transform their lives through early childhood education such as Early Head Start and Head Start, Personal Development like counseling and workshops, Professional Development including adult skills training and employment connection, and other services such as emergency assistance and the Home Energy Assistance Program. For more information and to apply for assistance, visit stepforwardtoday.org.
Stride Mobility
Stride Mobility is dedicated to enhancing mobility for those who seek to maintain an active lifestyle. Its personalized Complex Rehab Technology (CRT) is a game-changer, providing tailored solutions that promise comfort, stability and mobility for individuals of all ages. From the energetic toddler exploring the world on wheels to the spirited senior cherishing their independence, the company’s range of complex rehab wheelchairs, scooters and adaptive seating systems ensures that everyone can experience life’s journey to the fullest. Get connected with one of their certified therapists who provide not just equipment, but on-site fittings and service, education, and unwavering support. stridemobility.net
Summit County Developmental Disabilities Board (Summit DD)
Summit DD is the community resource that connects more than 5,000 children and adults with developmental disabilities to the support they need to reach their goals.
The levy-funded agency provides, coordinates and funds essential services that people with disabilities rely on each day. Whether it is early intervention services for infants, in-home care, or employment supports for teens and adults, Summit DD provides a lifetime of support for those eligible for services in Summit County. Find out how Summit DD helps position people for success at summitdd.org or by calling 330-634-8000.
Thrive Through Tennis
At Thrive, their mission is to utilize tennis as a therapeutic model. Their goal is for all participants to benefit physically, mentally, and socially from the sport of tennis. For adults and youths with different abilities, they offer both adaptive and wheelchair tennis programs. Homeschooled students learn and develop tennis skills through the Homeschool Tennis Academy. Their Parkinson’s program has an exercise session specifically designed to help rigidity, bradykinesia, coordination, and balance, followed by tennis instruction and play. The programs run at Center Court Tennis Club, 1 Eagle Valley Court, Broadview Heights, OH 44147. Please call 440-878-5600 or visit thrivetennis.org.
UCP of Greater Cleveland
UCP of Greater Cleveland is a nonprofit services agency that empowers children and adults with a wide range of disabilities to advance their independence, productivity, and inclusion in the community throughout Northeast Ohio. Services include pediatric therapy, educational services, case management, adult group homes, adult day services, vocational habilitation, and employment and transition services. Programs focus on individual needs and goals while taking a holistic approach that considers family and community support, public awareness, individual advocacy, and overall personal growth. Learn more at ucpcleveland.org or call 216-791-8363.
Community Voices
I Wish the World Knew
By Deanna C. Dilley
I wish the world knew the struggles disabled people go through. Some people think everything is handed to us and we are all helpless. They just don’t understand.
I wish the world knew the feelings that we all share. Disabled or not, we can all feel sad and lonely at times. We all feel joy and happiness too. Some people need to open their eyes.
I wish the world knew that we can do anything they can do. Yes, we may need extra help, but that doesn’t stop us from trying our best. Please take the time to lend a hand.
I wish the world knew that no two people are exactly the same. Wheelchairs, walkers and crutches, glasses, white canes, and hearing aids don’t define who we are. They just make us a little more unique.
CHECK OUT DEANNA'S FACEBOOK PAGE facebook.com/deanna.dilley
A Conversation with Deanna’s Poetic Dreams
TELL US BRIEFLY ABOUT YOURSELF.
“I am 44 years old (of Berea) and have Beals Syndrome (joint contractures). I love spending time with my friends and family. I love all animals, except snakes. I bowl with Friends Forever and am a former Special Olympics athlete. I am an advocate for people with disabilities. I am working on trying to publish “Special Poetry for Special People,” a book for and about people with disabilities. I am the founder of Deanna’s Poetic Dreams (Facebook. com/deanna.dilley). I have so far recorded myself reading 100 of my poems.”
WHEN DID YOU START WRITING POETRY?
“I officially started writing poetry for school assignments. However, I began writing poetry on a more regular basis when I was 17.”
IS WRITING SOMETHING YOU ALWAYS WANTED TO DO?
“My mom has told me I have been telling stories my whole life. Do I remember any of them? No. I remember in second or third grade, I was asked to write a poem about two alligators for Right to Read Week. That was in the early 1980s, so I doubt we still have it. Starting in second grade, I had my first pen pal through Girl Scout camp. In seventh grade, she sent me a chain letter, which was popular in the 90’s. I did not follow through but wrote to all of the girls there. One wrote back. Between junior high and high school, I had over 100 pen pals all over the USA, as well as Korea, England, Germany, and Ghana, Africa. Most were only one or two letters back and forth, but some lasted a long time. My Korean pen pal was actually through a pen pal project in sixth grade.”
DO YOU HAVE A FAVORITE POET?
“Yes. I have always loved Robert Frost. You can almost feel yourself walking through those woods and feeling the cold air on your face. I have a poem “The Path Forgotten” which I wrote based on his style. I also share my birthday with the poet E. E. Cummings.”
DO YOU DO ANY OTHER ART? IF SO, TELL US MORE ABOUT THAT. “I do many different arts and crafts projects at My Choice. We also go to
Creative Cabana, (shopcreativecabana. com), where we do bigger projects using resin or painting. We also made heat transfer tumblers and tie-dye shirts as a couple of our first projects there. At home, I sometimes color or play with ClipArt on my computer. I occasionally play color or cross stitch by number games on my tablet.”
WE ARE PUBLISHING THE POEM
“I WISH THE WORLD KNEW”, TELL US A LITTLE BIT ABOUT WRITING THAT POEM AND WHAT IT MEANS TO YOU?
“Wow, I never had to analyze one of my own poems before. I guess “I Wish the World Knew” is my message to the nondisabled community to show them that we work just as hard, if not harder than they do, in order to get what we need and want.”
WHY DO YOU THINK IT’S IMPORTANT TO EXPRESS YOURSELF IN THE ARTS AND POETRY?
“For me, I was bullied a lot in school. I did not know how to stand up for myself. I suffer from severe depression/anxiety. Writing is the only way I can get words out that I am unable to say verbally."
WHAT ARE SOME OF THE CHALLENGES OF WRITING?
“As any writer will tell, writer’s block and getting a book published. In school, if my junior high or high school teachers gave a specific topic to write about for a journal entry, I struggled to think of something. I have always done better when I could pick the topic or style I wanted."
WHAT ADVICE WOULD YOU GIVE OTHERS WHO ARE ALSO WORKING ON THEIR ART AND POETRY?
“It may sound cliché, but always follow your dreams. Adjust them if needed. As a 12 to 16-year-old, I wanted to be a “famous children’s author.” By age 17, I realized that my more adult poetry was much better. About 10 years later, I would discover Voicesnet.com, a site developed for amateur writers and poets. I liked this site because I could get feedback on my poems and learn how to improve. I had posted at least 400 poems on the site. Voicesnet.com shut down a couple of years ago, but I am sure you can still find a few of my poems out there.”
