19 minute read
Meet individuals, organizations and companies that strive to provide support for those with special needs.
People Knowto
Meet individuals, organizations and companies that strive to provide support for those with special needs.
By Lindsey Geiss
Above: Jenna Newman. Firefighter Tommy is pictured with Jerry Craddock and members of the Mentor Fire Department.
HEROES HELPING THOSE WITH SPECIAL NEEDS
Four years ago, Jenna Newman, mom of four, noticed the Mentor Fire Department was having a preschool fire safety story time at the local library. This experience appealed to her for her son Tommy, a fourth grader at Mentor CARES (Cardinal Autism Resource and Education School) who has nonverbal autism, ADHD, SPD and anxiety.
With Tommy in mind, she talked to Mentor Fire’s then Public Education Specialist, Jerry Craddock, about repeating the event for a smaller group of children with special needs, those who may be considered the most vulnerable and in need of safety education and support.
Newman wanted her son to know about safety at home. She has a small heart issue, and five years ago had an episode of SVT (supraventricular tachycardia).
“It made me wonder, ‘If we are home alone and something happens to me, who will take care of my
son?’” she says. “He needs to know first responders will be able to help me, and they need to know how to deal with someone who may not understand or react like others do.
“We gave it a try and it was chaos,” Newman says. “It wasn’t working for my son. The program was too long and needed to be simplified.”
Newman went to work writing social stories to break down key safety concepts like dialing 911. The first Craddock read was on stop, drop and roll.
“Tommy wanted nothing to do with it the first five times,” Newman says. “He ran out of the room screaming.
“I called the special needs safety program STICKS because my son is obsessed with sticks; it stands for Superhero First Responders Teaching Safety is Critical to Kids with Special Needs,” she explains. “The main purpose of the program is to get individuals of all ages with any kind of special needs comfortable around first responders — and first responders comfortable around them — while also learning some safety lessons. One touch-a-truck event a year is not enough for our children. Repetition and reinforcement are key.”
Newman asked to see Craddock daily, coordinated with him on subject matter and programming ideas, created more visual support and introduced Tommy to the firefighters again and again.
Now Tommy loves to dress in his own firefighter gear and collect patches from all the fire departments.
“Tommy’s relationship with Jerry is the most amazing I’ve ever seen,” Newman says. “He smiles and gives Jerry a hug. The special needs safety program is where Tommy learns more than anywhere else, including at home or in school because of the repetition and me making him go.”
The library events grew into regular, monthly special needs story times and morning safety programs at fire and police stations in Mentor, then Willoughby and Madison, fostering ongoing partnerships across Lake County.
“The program is open to anyone,” she says. “There is absolutely no judgement. I designed it around how my son learns. Each 30- to 45-minute program includes a brief introduction (hello, high five, fist bump, etc.), social story (with concise, consistent messages and visuals), and short video or hands-on activity.
“I try to have the firefighters put on full gear so the kids get used to seeing them dressed that way and are not afraid,” she adds. “We also hang out, check out the trucks and tour the station.”
Newman is founder and president of the newly-formed nonprofit Heroes Helping Those with Special Needs, which focuses on teaching safety to those with special needs in partnership with local first responders.
“I see it as a two-way street,” Newman explains. “First responders can have all the training in the world, but if someone is fearful, does not understand or is unable to communicate, they cancel each other out.”
In addition to STICKS, Heroes Helping Those with Special Needs provides sensory bags for fire and police departments locally and nationwide to keep in their vehicles as well as free specialized first responder training programs in partnership with the Autism Awareness Training and Acceptance Program (AATAP) of Hubbard, Ohio, run by Justin Meade, a police officer, crisis intervention specialist and special needs advocate.
“Tommy puts together every sensory bag,” Newman says. “He puts every item inside.” This includes noise protection headphones for loud traffic and sirens, sunglasses for flashing lights and sunshine, fidget toys for comfort, and a dry erase board so firefighters or police officers can draw pictures if needed. “Tommy delivers them to the local departments to meet everyone,” Newman adds. “After the eighth time going, he walks in like he owns the place. He’s grown so much through these experiences.” For all her contributions to the autism community, Newman received a Milestones Autism Resources 2021 Family Tribute Achievement Award.
She advises, “Don’t sit around and wait for someone else to start an idea that you have, just go for it!”
For more information on Heroes Helping Those with Special Needs, to schedule a training or order materials, find the group on Facebook, email heroeshelping@yahoo.com or call 440-255-8811. More information on AATAP can be found on Facebook @ aatap4all or by contacting aatap4all@ gmail.com or 330-974-4324.
Crystal Sledge and her son Zion.
Photo courtesy of Crystal Sledge
NO LIMITS 2 AUTISM
Crystal Sledge, of Euclid, and her teenage son, Zion, know no limits to autism. It is why she shares her story through a blog by that name, and why Zion regularly contributes in “Z’s World.”
As the single mother of Zion and preteen daughter, Dekotah, Sledge says, “We may have endured many hurdles, but autism has never stopped us. Autism is part of our lives, but it doesn’t define all we do.”
As she learns, she shares with others to educate, advocate and raise awareness. Sledge has become a leader in that regard, serving others through 16 years in family services, IEP coaching, and her current role as a case manager for individuals with developmental disabilities.
“I realized over the years that my experience was not like that of other families,” she says. I became well versed in what to do to advocate because I had people in my corner telling me. I was naturally advocating and getting him the services he needed by speaking up and asking questions. I realized I had a seat at the table. People don’t know you have the right to ask those questions. Parents are valuable team members. I was privileged to have people to help me along the way, so I wanted to share what I’ve learned and started the blog about three years ago.
“Although it was years before Zion received an actual diagnosis, I jumped right into this journey,” Sledge adds. “It hasn’t always been easy. I’ve cried, been frustrated and many times I’ve questioned God. But there have also been so many laughs on this journey and I’ve watched my overactive little boy blossom into this handsome, loving and creative young man.”
She advises other parents to “give it time” and “always have hope.”
“The kid Zion is right now — very social and outgoing (dancing at family gatherings and presenting at a leadership forum) — but he wasn’t always that kid,” she reveals. “He was screaming and crying and banging his head and running off when he was young.”
“I always tell parents to trust your gut,” she says. “Zion was 3 years old when it was first suspected that he may have autism. We recognized he walked on his toes slightly, he was able to talk but had some speech delays, and he preferred to play alone rather than with his peers. When he was in day care, I kept saying to the doctor that something is not right. At first I heard, ‘Well he is a boy’ or ‘It’s just how he is.’ I knew it was a meltdown and not a normal tantrum.”
Through work with Help Me Grow and PEP (Positive Education Program), delays were identified and they moved closer to the diagnosis, which ultimately came at about age 6.
“Immediately I told my supervisor at work,” Sledge says. “They gave me options to work around my schedule.”
She found it also was important to be upfront with her concerns when she switched to a new daycare.
“I tell parents to communicate with everyone; they are all part of the team,” she says.
Over time, ADHD and anxiety also were identified and addressed.
Sledge also attributes their progress and success to his school and teachers.
Zion’s passion and talent is drawing.
“He writes his own scripts and draws his own cartoon characters with skill,” Sledge says. “Zion did some career exploration. He talked to Beck Center for the Arts and learned about different careers in the arts.
“I tell him, ‘You can be an artist’ and try to identify those opportunities for him,” she adds. “I took him to drive through Waterloo (Arts District) to see how people make graffiti art, and helped arrange for him to be a student artist for local nonprofit The Superhero Project.”
Zion worked with a mentor to design superhero characters for children with illnesses or disabilities, which Sledge says was an important exercise in flexibility to design what others want.
Zion wants to live on his own. Together, they plan to explore the many resources in the community.
Last summer, through Services for Independent Living (SIL), Zion had the opportunity to participate in Opportunities for Ohioans with Disabilities’ Ohio Youth Leadership Forum. The five-day career leadership training program was offered to junior and senior high school students. It helps develop skills in leadership, self-advocacy, disability awareness and more to help them successfully transition from high school to adulthood. “Zion learned about housing, voting, college and self-advocacy skills,” she says. “The staff reached out and asked him to return this year as a presenter to speak to the delegates about his experience and share things he has accomplished since last year’s forum.”
On her blog, Sledge writes, “When do parents speak up and advocate? When should they sit back and let their loved one experience all that comes with being an adult?”
When Sledge is not at her children’s swim meets, basketball games, appointments or other activities, she makes personal time for journaling, yoga and running.
“Outside of an autism mom, I am a person with my own things I like to do,” Sledge asserts. She is part of the special needs parent support group Mother 2 Mother and BeFree Project.
“It motivates me to keep writing with accountability and support,” she adds.
Sledge, who has a wealth of stories, says writing a book one day “is on the agenda.”
To read the No Limits 2 Autism blog or connect with Crystal Sledge, visit nolimits2autism.com or find her on Facebook and Instagram @ nolimits2autism.
— Crystal Sledge
Which came first: the chicken or the egg? In the case of Alex’s Farm Fresh Eggs, there were 150 chickens at the Waldbaum Family’s Red Hawk Farm in Geauga County.
Alex’s Farm Fresh Eggs are free range, cage free, all-natural large brown eggs from chickens raised without pesticides or chemicals, available by direct order/pick-up in Solon and at a growing number of markets and restaurants on Cleveland’s East side. Easily recognizable, the eggs are adorned with the business’ logo, an eggshaped face with glasses inspired by its namesake, Alex.
When Lisa Waldbaum’s youngest son, Alex, was diagnosed with Lowe syndrome — a rare genetic disorder that affects the eyes, brain and kidneys — she and her husband, Adam, were determined to ensure life for their family of five would go on as normal despite daily challenges and special medical needs.
Thirteen-year-old Alex is in seventh grade at Solon Middle School. He is a blossoming entrepreneur and sales guru, thanks to his mother’s foresight and passionate commitment to enriching her sons’ lives. When Alex is not in school, he can be found helping with the chickens, stamping and packaging eggs and doing sales and deliveries, often alongside his 17- and 20-year-old brothers and their friends.
The idea for a farm fresh egg business was hatched by Lisa Waldbaum in 2019 as a way to bond with Alex while developing his independence and work skills.
“Before the pandemic hit, I thought it would be nice to get back to work, but I have special needs in terms of flexibility,” Waldbaum says. “Life gets crazy with three kids, lots of doctor appointments, regular lab work and other hands-on things I do.
“We have always enjoyed spending time on our family farm and equestrian property in Newbury,” she says. “Aside from the horses, we had a few dozen family chickens and shared fresh eggs with friends. I thought, ‘If we start this journey and make it a business, we’ll make it fun and educational in the process, developing skills Alex greatly needs.’
The family hobby grew into a viable and rewarding business, bringing them to the farm two or three times per week to gather buckets of eggs.
“We decided to go all in and ordered 150 chickens at the end of 2019,” Waldbaum says.
“People love the fresh product, but if they meet Alex, it becomes even more special,” Waldbaum says. “Alex is already incredibly social and well spoken, so the sales part is simple and a perfect fit. He is happy and excellent with people. We hit the pavement, literally, and went into markets with a few dozen eggs, inviting them to please try and consider carrying our eggs. They called back and placed orders. Alex is
Alex Waldbaum helping at family business Alex’s Farm Fresh Eggs.
Photo courtesy of the Waldbaum family building personal relationships.”
In just a little over a year, Alex’s family has built a separate chicken barn that now houses 350 chickens, and they have hired help. The Waldbaums plan to continue growing the business.
Lisa Waldbaum’s community involvement extends far beyond the egg business. A member of the National Lowe Syndrome Association since 2012, she has served as the organization’s president and board chair since 2016, where she mobilizes the board and has made scientific research a number one priority. A native New Yorker, she is a champion of the local Friendship Circle Cleveland chapter, which provides social and recreational opportunities for children with special needs by connecting them with local teenagers. The Friendship Circle of Cleveland honored the Waldbaum family, citing Lisa and Adam’s “relentless perseverance and spirit of giving back to community,” as well as their young adult sons, Josh and Sam, for serving as “great role models as they do their part to keep their family cohesive, inclusive and strong.”
“I hope Alex will grow and develop and live independently in the future,” Waldbaum says. “We take it day by day. Families with issues like this, we live one day at a time and hope and plan for the best. Embarking on new adventures together prepares our children for life.”
For more information on Alex’s Farm Fresh Eggs, including where to buy them, or to place a direct order, find them on Facebook, follow @ alexsfarmfresheggs on Instagram, or call or text Lisa at 216-407-6622. To learn more about Lowe syndrome, connect with resources and help, or get involved in the Lowe Syndrome Association’s circle of care and vision for a cure, visit lowesyndrome.org, email info@lowesyndrome.org or call 216-630-7723. To register and join the Friendship Circle of Cleveland, or to volunteer visit friendscleveland.com.
A VOICE AT THE TABLE
Donna Prease feels people with disabilities should have a voice at the table. Prease, of Cleveland, has made sure she’s had a seat.
“We need to let our voices be heard,” she says. “The best way is to serve on a board.”
She has served on numerous boards for organizations such as Greater Cleveland Regional Transit Authority Community Advisory Commitee, Cleveland Department of Aging Advisor Council, Maximum Accessible Housing of Ohio, Youth Challenge, and North Coast Community Housing Development Organization.
“They wanted people in the community to be eyes and ears for the board of trustees,” she says about her work on the transit authority board.”We would provide recommendations on services, routes, etc.”
Serving on boards is just one way Prease can advocate for people with disabilities. Her involvement in the community is personal, but also has become her passion and lifelong career.
After graduating with an associates degree from Cuyahoga Community College, she says she had a difficult time finding employment as someone with a physical disability. She was born with osteogenesis imperfecta, a bone disorder.
Prease found work at Linking Employment, Abilities and Potential (LEAP) as a secretary. She then became a program support specialist, helping to launch JobLink, which helps high school students with disabilities to prepare for life after graduation.
However, she wanted to take her work a step further and became a grassroots advocate.
“I started teaching people with disabilities how to advocate for themselves,” she says.
She has traveled in the community, Columbus and across several states to talk
Donna about advocacy, particularly Prease in transportation. Prease also was named the 2020 recipient of ADA Cleveland’s Legacy Builder Lifetime Achievement Award. She is passionate about public transportation and its accessibility to everyone in the community. Prease says it’s about independence. “Without transportation, I can’t go anywhere, I would just stay home. In the community, people with disabilities need and want to be as independent as possible.” She provides advice for people with disabilities who are looking to become advocates. “What they need to do is research a particular issue so they know what they’re advocating for and about,” she says. She suggests getting on a board or finding out what needs to be done to help people. “They need to educate people,” she says. “Advocacy equals education.”
THANK YOU
TO THE 1,400-PLUS PROVIDERS FOR YOUR SUPPORT AND SERVICE TO OUR COMMUNITY.
To join the LiveSpecial community, contact wendy@livespecial.com
HARMONIOUS PARTNERSHIPS RAISE AN ARTISTIC VOICE
“S ymFUNNY” is a published book illustrated by Kira Weber, a 2020 Kenston High School graduate and Chagrin Falls-based artist.
The manuscript, filled with playful homonyms, is an introduction to the orchestra and language concepts for young children. The story is the product of Jeannie FlemingGifford, then education director of the Columbus Symphony Orchestra, and Anna J. Magnusson, executive director of Iowa Able Foundation, a nonprofit dedicated to empowering individuals with disabilities to achieve and maintain independence.
The gifted young artist connected with Fleming-Gifford, now an Eastlake resident and executive director of Fairmount Center of the Arts in Geauga County, during her senior mentorship project at the center.
“It was ironic; Anna and I both believe it was waiting for Kira,” Fleming-Gifford says. “Kira’s designs brought life to the story.”
Fleming-Gifford recalls, “She had a very strong interest in the arts. While some of the traditional office work was not the best fit for her skills, I quickly recognized her talent.”
She says Weber’s autism gives her the ability to focus and delve deep into creating art that is extraordinary, referring to it as her superpower.
“I feel like I can focus on one thing for a really long time,” agrees Weber.
The two kept in touch and after attending a solo art show of Weber’s, Fleming-Gifford had what she calls an “a-ha” moment: Kira was the perfect fit for bringing the “SymFUNNY” concept to print, so she asked her if she would illustrate it, and Weber did.
“The book was really exciting to do and a lot of fun putting it together,” Weber says.
Fleming-Gifford also described it as a shared learning experience, given it was the first book for each of them.
The story, designed for ages 3-8, captures the viewpoint of young children and their expectations of going to the symphony versus their actual experience. The main character of the book, Alex, and members of the orchestra are purposefully drawn and shaded for diversity and include a person in a wheelchair.
“My sister likes dinosaurs and asked if I could put one in the book,” Weber reveals. “She came up with the character, Rex [a sort of mascot that appears throughout the book].”
While Weber’s freehand “SymFUNNY” illustrations have a bold and colorful, cartoon-like quality, her style has been described as a mixture of realism, expressionism and portraiture using various mediums, including pencil, colored pencil, pen and paint. Her inspiration comes from things she sees and likes, in nature, for example.
“I also did a really cool painting of a lion,” she says. “The book and lion are my two favorite things so far.”
Weber expressed herself through
Kira Weber (right) displays her artwork alongside her mom, Lori (left).
Photo courtesy of the Weber family art before she could talk. As soon as she could hold a crayon, she began creating intricately detailed art.
“I’ve always enjoyed drawing my whole life,” Weber says.
“We were told Kira’s reading would never hit a fourth-grade level, and you kind of accept that,” says her mom, Lori Weber. “Let me tell you, she is now reading the Harry Potter books. Do not let anyone tell you there is a ceiling. There is no ceiling. It is always going to be a moving target.”
Lori also encourages parents to go outside their own comfort zones to nurture their children’s interests, saying, “If your child likes art, have crayons and paper and different mediums out in lots of rooms to give them access to it.”
While Weber communicates best through her art, Lori says her daughter’s communication skills are as strong as they are because of “good schools and compassionate teachers in Chardon and Kenston, years of practice and never being afraid to put herself in uncomfortable situations.”
“When I was younger I was pretty quiet,” Weber says. “I joined groups, activities and clubs like track, cross country and the swim team; that helped, and also speech class.”
In addition to her art, Weber plays ukulele and runs (she is preparing for the Cleveland Half Marathon). With more art shows and entries planned, when asked about her plans for the future, she says, “I want to enjoy painting and drawing.”
To view or purchase Kira’s art, visit @drawings_by_kira on Instagram and Etsy. For more information on SymFUNNY or to obtain a copy of the book, visit atgoriginals.net. The book, published by Windjammer Adventure Publishing in Chagrin Falls, is also available at local libraries, including Willoughby-Eastlake Public Library and Geauga County Public Library.
