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A Helping Hand for Students Who Learn Differently

February 23, 2019

Story and photographs ©2019 Robin Rayne/ZUMA 

Marietta, Georgia —  Mindy Elkan knew her speech therapy clients with learning challenges and developmental disabilities needed more than what public school special education programs provide.

“The public schools can only do so much,” the Marietta speech therapist said, remembering the time ten years ago when she decided to start a small private school herself. “I always wanted to open a school for children with communication disorders.”

Elkan, 62, opened the MDE school in 2009, named to honor her late husband Mark David Elkan.  “I was inspired to keep his legacy and his memory alive by establishing a school for children who learn differently. He loved children and was always there to help at the clinic,” she said. Mark Elkan, who died in 2009, often volunteered at hippotherapy sessions at area stables as well as community walks to raise public awareness of autism, she said. “His heart was always open to any individuals who needed help — especially children.”

Elkan’s school started small, with classes held in her Marietta speech therapy office.

“We began with three students and one part-time teacher. Our goal was to help families who were home-schooling their children with learning disabilities. It was like home-school away from home,” she said. The school added four more students the next year, with 17 students and a third teacher added in the school’s third year, she said.

Ten years later, MDE School has 49 students and a full-time staff of 19, tucked into quiet office park in east Cobb County. The school prides itself on providing a loving and nurturing environment.

“It’s what Mark would have expected,” Elkan said.

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Tuition is $21,000 per school year, but financial assistance vouchers and scholarships are available from the state and county, Elkan said.

The students’ challenges range from autism, Down syndrome, cerebral palsy and other developmental disabilities to language and communication disorders. Several students are non-verbal, and a few experience seizure disorders. Student works at their own pace. Teachers work closely with parents to create individualized educational plans designed to meet each child’s exact needs. The school is accredited from kindergarten through eighth grade. Life skills and prevocational training are offered for high school-age students.

Elkan received her master’s degree in speech and language pathology from Hofstra University in New York before relocating to Georgia in 1990.

With a ration of four students to every teacher, the school provides smaller classrooms, flexibility and one-on-one instruction. Teachers recognize the value of enrichment programs and coordinate with the community to bring yoga and dance sessions into their schedules, as well as golf, cooking and Lego clubs. Students are also integrated into the community with regular visits to restaurants and a variety of local businesses.

While the school focuses on academics, art, music, life and social skills and prevocational training are considered equally important parts of the school day, she said.

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“Students are taught basic life skills – simple things like brushing their teeth, setting a table, making coffee and doing their laundry to ordering food at restaurants and interacting with people.

“Social skills are very important,” Elkan stressed. “We are preparing them for life.”

Anita Newby’s son John Michael, 16, is in his fifth year at the school. “He had a very difficult time in the public schools because he has complicated language and processing problems and needed a very focused type of instruction.

“John Michael didn’t speak until he was eight years old,” she said.    “It’s still difficult to understand him sometimes, but the tiny size of the classes and one-on-one time with his teacher helps him a lot. The classes are customized to provide what each child needs. It means so much t to have your child happy and learning in school,” she said.

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Kick-off Time at Atlanta’s Super Fest

February 7, 2019

Story and Photographs by Robin Rayne

They came to pass, punt, tackle and cheer on Super Bowl weekend, with passion and determination worthy of any NFL team.

Less than a mile from Atlanta’s Mercedes-Benz Stadium where the actual 2019 Super Bowl game would unfold before millions, this inclusive football and cheerleading clinic known as Super Fest was underway for more than 120 children and young adults with developmental and other physical disabilities. 

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A free-spirited young cheerleader practices her jump before the day’s ‘game.’

Cheerleaders from both the New England Patriots and Los Angeles Rams teams were on hand to greet, teach and encourage all who came to the Georgia State University football practice field. They were joined by volunteer coaches, athletes, and alumni from the Atlanta Falcons, local universities and the National Football League.

“Our goal was to provide a realistic and enjoyable experience to individuals with disabilities and their peers, enabling everyone to participate in the excitement of the Big Game weekend,” explained Jessamy Tang, Super Fest’s organizer.

Tang, a former sports media executive for ESPN, and husband John Blascovich, a business executive, created the Mathew Foundation as a non-profit organization to improve lives for persons with Down Syndrome.  They named it after their ten-year-old son Matthew, who has Down Syndrome. 

“It is a private charitable foundation that strives to make a meaningful impact for persons with Down Syndrome, one program at a time,” Tang said. “We believe in collaboration within the national and global Down syndrome community as well as externally with both governmental and non-governmental organizations,” she said.

Tang, her husband, and foundation directors strongly believe the rights of children with disabilities to all forms of physical activity and sport are often not being realized, although they are enshrined in numerous legally-binding documents and are well-known components of healthy child development, health maintenance and chronic disease prevention.

Tang, 51, worked in sports radio media at ESPN for many years and cultivated numerous connections to celebrities, players and coaches in the pro-sports world. The Matthew Foundation organized Super Fest as an annual event to be hosted in the same city and week as each year’s Super Bowl, and is open to all youth and young adults.

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Bill Ramsey, an NFL alumni, helps a young boy run for a touchdown
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Shaelyn Lott, 9, Cumming, GA, gets coaching from New England Patriots cheerleaders
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A young football fan tells a volunteer from Georgia State University to “Go out for a long one”
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Jennifer Jackson pushes her 12-year-old son Aidan in his wheelchair through a scrimmage play.

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Shaelyn Lott, 9, Cumming, GA, gets coaching from New England Patriots cheerleaders
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Happy Hearts and Tears of Joy For All at This Pageant

October 27, 2018

Special Needs Pageant

Dressed in formal gowns, Contestants lined up on stage as they waited their turn to greet the judges.

Story and Photographs ©2018 Robin Rayne/ZUMA  Marietta Daily Journal

Marietta, Georgia — With smiles and confidence filling the stage, thirty excited and happy contestants strolled, glided and twirled before a table of pageant judges in the Equestrian Center at Jim Miller Park on a cool September night, hoping to be named Pageant Queen or King.

It was the North Georgia State Fair’s first Special Needs Pageant, and every contestant won hearts and brought on the tears from the enthusiastic crowd and judges alike. 

“This was our first pageant for the special needs community and we hope it will be an annual event at the fair,” explained Renee Fielden, a retired Coca-Cola executive who directed the event. It was produced by the Miss Cobb County Pageant organizers and was open to all, at no cost.

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Julie Denton, from Kennesaw, Georgia, escorts her son Christian, 9, across the stage after greeting the judges.

“All credit is due to Tod Miller, the Fair Manager. He wanted to do something to highlight the Special Populations Day at the fair,” Fielden said.  Miller reached out to Terry Chandler on the Fair Board and Gene Phillips, President of the Miss Cobb County Pageant about producing the pageant. “I’ve been involved in pageants for many years, and I was honored that they asked me to be the director,” she added.

 

Contestants were judged on attire and personality.  The winners in each division were awarded a specially designed Fair Jacket with the King & Queen of the Fair logo, along with four VIP passes to the fair, she said. Everyone who participated received a pageant t-shirt. 

“There are not many special needs pageants in the area, so this gives everyone an opportunity to participate and showcase their wonderful personalities,” Fielden said.

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Mandy Hoopingarner, 36, from Powder Springs, Georgia, waits for her cue to dance before the judging panel.

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Gracie Randall, 6, from Kennesaw, Georgia, blows kisses to the judges

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A young girl with limited vision is guided by her mother to a mark on the stage where she met the judges

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Al Cosby, from Dallas, Georgia,, kisses his 5-year-old daughter Chesney before he carries her onstage.

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Contestants in the Junior Queen category assemble on stage as winners are announced.

 

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The contestants wave to the enthusiastic crowd as they wait for results.

A place for homeless veterans to lay their heads

June 25, 2018

Zion Keepers help homeless disabled veterans stay off the streets

 

Photo and Story © Robin Rayne/ZUMA

MARIETTA —Veronica Sigalo knew she had to do something to help the homeless population, even if it was for just a few individuals at a time.

   As a nurse at the DeKalb County jail, she watched as inmates were brought to the jail, released — yet returned the very next day.

 “I ask them, ‘Why you come back?’ They say they need a place to stay, especially in winter, so they do stupid stuff so they can come back and have some food and stay warm,” said Sigalo, 58, who emigrated from Nigeria in 1986 and worked as a licensed practical nurse for several years. 

“Where I come from, going to jail is taboo. Nobody wants to go to jail. I talked about it with my friend who also worked at the jail and we decided to do something. As we got more involved with the homeless we decided to start a non-profit to help — but we had no idea how to do it,” she said. “I remember thinking, ‘If God wants us to do it He will show us the way.’ God led us to see all the people who are homeless and see how others are helping,” she said. “We do it by ourselves, step by step, to start the non-profit.” 

Sigalo launched Zion Keepers in Marietta in 2005. The faith-based non-profit organization provides housing and other supportive services to homeless disabled male veterans, people living with HIV/AIDS, people struggling with mental illness, substance abuse, and other life controlling issues.

Zion Keepers currently provides subsidized housing in a Marietta apartment complex for nine veterans who would otherwise be homeless. Sigalo said she hopes to add temporarily living space in Smyrna that would accommodate another six veterans. 

Though she lives in Stone Mountain and recognized the increasing need throughout the Atlanta metro area, Sigalo said she felt led to open her non-profit office in Marietta. 

“There was a great need in Cobb County for veterans. I always thought I would go into ministry, but this is where I’m called to serve,” she said. 

With funding from federal Department of Housing and Urban Development, Zion Keepers was initially able to provide living space for 18 homeless veterans in six apartments on Franklin Road near Interstate 75. Recent budget cuts caused the non-profit to downsize to three apartments and relocate a few miles west.

 Residents are required to pay $400 each for rent. Zion Keepers pays all utility bills.

 “We didn’t start out just serving disabled veterans, but there were many veterans in the program. Now the Veterans Hospital calls if they have someone in need and they ask if we have room for him,” she said. “If we do, he has a home for as long as he needs it.”   

Zion Keepers help homeless disabled veterans stay off the streets

 

 Homeless Population Difficult to Count

Veterans become homeless from a complex set of factors such as severe shortages in affordable housing, poverty, high unemployment and mental and physical disabilities, Sigalo said. A large number of displaced and at-risk veterans live with the lingering effects of Post-Traumatic Stress Disorder (PTSD) and substance abuse, compounded by a lack of family and social support networks. 

While accurate numbers are difficult to assess, Veterans Administration officials estimate that more the 200,000 veterans are homeless on any given night nationally, with more than 400,000 experiencing homelessness over the course of a year. At least one out of every four individuals who is sleeping in a doorway, alley, or cardboard box in cities and rural communities has put on a uniform to serve in the military, and nearly half of all homeless veterans served during the Vietnam era, VA officials note. 

A 2017 report prepared by a coalition of advocates for the homeless lists 403 individuals in Cobb County as either ‘sheltered,’ ‘unsheltered’ or living in ‘transitional housing.’

Advocates define ‘sheltered’ individuals as those who live in domestic violence and emergency shelters, or motels or apartments paid with vouchers by public or private agencies because the person is homeless.

 ‘Unsheltered’ individuals live in places not designed for human habitation, such as abandoned buildings, park benches, under bridges or in illegal makeshift camps in wooded areas.

‘Transitional housing’ provides living support for homeless individuals or families, with the goal to facilitate independent living within 24 months, unless approved by HUD for a longer period.

Official numbers provided to HUD are often incomplete because of different barriers to obtaining comparable data, advocates for the homeless said.

“If someone is living in a hotel, HUD says they’re not homeless,” notes Kaye Cagle, a spokesperson for MUST Ministries in Marietta. School systems might classify a student as homeless if they live in a hotel, she said, noting different definitions of the term.

“We have 200-300 unique individuals that we turn away from our shelters every month,” due to space limitations, notes Chris Fields, executive vice president at MUST Ministries. “For the first time since we began measuring, the largest percent of the total of those are children at 38 per cent.”

The actual homeless population in the county is generally thought to be at least five times higher than the survey count, MUST officials estimate.

As shelters close and rents escalate in urban areas, more and more individuals find themselves pushed out to suburban towns to survive, advocates said.

Sigalo said homelessness has become less of a priority with government officials, “but is still very much with us as a problem. Funding is so much more competitive now, but we hope to get back to where we were when more funding is available,” she said. 

Zion Keepers help homeless disabled veterans stay off the streetsSagalo now works with a staff of three from a small, sparsely-furnished office in Smyrna. “We sometimes work without pay, like a church. I have good children who are grown who help us keep going,” Sigalo said. 

“I wish more people knew we exist,” Sigalo said. “We can’t do anything without funding. We need more volunteers who could help, and we could use a van to get the veterans to appointments.” The veterans typically use public transportation for visits to the VA Medical Center in Decatur, with trips often taking several hours each way, she said. 

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Donald Lewis O’Neal,  Fletcher Thompson and Tony Salomone share one of Zion Keepers’  three apartments in Marietta.

 O’Neal, 70, grew up in Atlanta and served as an Army radio communications specialist in the Central Highlands of Vietnam in 1968-69. “I was in the jungle, I was the link between the front lines and the command. I was friends with guys who went out on patrol but didn’t make it back. It’s really hard to talk about it,” he said. O’Neal lived with relatives for many years but eventually found himself on the streets. “Life didn’t go so good,” he said. He connected with Zion Keepers earlier this year.

 Thompson, 69, was an engine technician and tester for the Air Force in the 1960s. “I was a sergeant, stationed in the U.K. along with the Royal Air Force. When I got out I worked for K-Mart as a store manager, but I was an alcoholic,” he said. 

Hospitalized for eight months in 2013, Thompson said he nearly died twice. 

“God let me live but I lost all my things. I went to the VA and told them I was homeless and needed a place to stay. I only had a few dollars in my pocket.” Thompson moved into a Zion Keepers apartment in March.

 Zion Keepers help homeless disabled veterans stay off the streetsSalomone, 62, served three years as an Army communications specialist in Texas and works as a maintenance person for a local assisted living facility. “I had a job in Canton and I had my own place to live, and then the company I worked for went out of business. Things fell apart after that,” he said. 

“I lived in a motel on Highway 41 for a few months and then a friend told me about Miss Veronica. I’ve been here four years,” he said.

He is grateful for what Zion Keepers provide but looks forward to a day when he can live in his own apartment again.

“Once you reach a certain age getting a job is really tough. Getting a place is really tough. This country is not made for the old. I see that every day where I work with people who have the money. If you don’t have the money, it’s tough luck.”

Unwelcome in the Neighborhood

 In October, 2017, Cobb County commissioners agreed to lease its Rose Garden facility on Teasley Drive in East Smyrna to Zion Keepers for an initial five-year term.  

   Sigalo plans to open the facility later this year as a day center, with room for a food bank, counseling services and limited transitional housing for six disabled veterans. Veterans could stay could stay for up to a year as they get their life back together, she said. 

The building was deeded to the county by the Cobb County Healthy Futures Foundation in 2010 and housed a learning center for underperforming elementary students until that business ceased operations in 2016.

Zion Keepers help homeless disabled veterans stay off the streetsZion Keepers will be responsible for all facility repairs, maintenance, upkeep and improvements to the property, as well county-approved insurance coverage, Sigalo said.

But residents in the Rose Garden neighborhood are angered about Sigalo’s plan to move into the currently-vacant building. More than fifty neighborhood residents met with county commissioners in February to voice their intense opposition.

“What happens if they decide to go crazy? They could become violent,” warned Emily Norwood, 22, who served as a boatswain’s mate in the U.S. Navy. She and her veteran husband live with their year-old toddler son Caysen next to the currently-vacant property. “I shouldn’t have to be worried at night that someone from the shelter comes into my house. Bringing in strangers, there’s a higher chance of something happening.”

“It’s nothing against veterans, but the odds of them all being okay are very small. They’re probably great guys, but that’s a lot to throw at a neighborhood,” said Scott Bagwell, 58, who also lives nearby. “We don’t want it. We just don’t know what we’re getting into. It would be hard to fit into this community,” he said.

Bagwell fears veterans’ post-traumatic stress disorder breakdowns could be triggered by sounds of low-flying aircraft from nearby Dobbins Air Force Base. “The unknown is the problem. They could go off their medications. There’s children playing around here. What are they going to do all day? It’s a safety thing and a big potential threat,” Bagwell said. 

‘Fear is the Enemy’

Those comments make Sigalo sad. 

“They are coming from fear,” Sigalo acknowledged. “They don’t want to hear that these veterans served their county. It is like they do not care. Most of the population we see is age 54 and up. These veterans should be at home with their families, especially the aging ones. My heart is in helping these veterans stay off the street. They fought for us and they help make this country what it is,” Sigalo said. “The least we can do is help them when they are down.”

Commissioner Lisa Cupid listened to the residents’ concerns at the February meeting. “This neighborhood has had its fair share of challenges and feels like it has been overlooked,” she said. Cupid’s district includes the Rose Garden neighborhood.

While she supports Zion Keeper’s mission to serve disabled veterans, she conceded that the Rose Garden community was not provided reasonable notice and participation in the leasing decision. “We are asking this visibly vulnerable area to bear the weight of an unmet social issue pertaining to transitional housing of a vulnerable population. It might not have been made clear to everyone exactly what Zion Keepers’ plan included,” Cupid said. 

Cupid said it was not unreasonable for any residential community with a proposed transitional group home of six or more people to have questions or concerns about the impact a group home will have in their community.

“Serving veterans is an honorable and critically needed service,” Cupid said. “I think Zion Keepers does great work. Once the neighborhood sees who they are and who they serve, I think they will be more supportive.”

Cupid said she wants to be fair to both the Rose Garden community and Zion Keepers, and hopes the building can be used in a way that serves both.

Sigalo said she is waiting for the county to complete roof and gutter repairs before opening its doors over the summer months. She plans to offer services to the community including counseling and a food bank initially but will delay adding living space for veterans for the present.  “We need to gain the community’s trust first,” she said.

Chris Hernandez: A Musical State of Mind

June 6, 2018

 

 

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Chris Hernandez conducts school orchestra in performance of his work, “Ciadudela”

Story and Photographs ©2018 Robin Rayne/ZUMA Press

Chris Hernandez can’t stop the music.

“I always have these tunes playing in my head,” says the 17-year-old musical prodigy, a junior at Kennesaw Mountain High School who made his debut as both composer and conductor at the school’s recent Spring orchestra concert.

Music has been a part of his life since before he was born.

“I hear these tunes that are similar in rhythm, melody, and chromatic structure. They just come to me and I write them down.  That’s how I come up with these compositions,” explained Hernandez, whose original piece “Ciudadela” recently premiered in the school auditorium to a standing ovation from the capacity audience.

The title is Spanish for citadel, he explained. “It represents a state of mind where everything is as expected,” he said. The score was heavily influenced by Latin music his father played for him as a child and was Hernandez’ third musical composition — with a promise of many more to come.

Hernandez lives with younger brothers Richie and Jacob, and parents Ricardo and Sandra in West Cobb County. Chris is a magnet student in the high school’s well-respected instrumental music program.

RN4_7019School Orchestra Director Joel Schroter encourages students before final concert of their school year.

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Gentle, soft-spoken and humble, Chris speaks with passion as his graceful hands constantly finger notes on an invisible instrument. It could be a passage from his violin score with the school orchestra, or something on acoustic guitar, viola, piano, clarinet, electric bass, alto saxophone, drums, recorder – even mandolin – that he also plays.  

“I’m willing to try anything out,” he said. He also sings with ‘perfect pitch’ — the rare ability to perfectly produce any given note – without a musical instrument as a reference.

2016 was Joel Schroter’s first year as the school’s orchestra director when he met Hernandez,  an incoming freshman at the time.  From the first weeks of orchestra class, Schroter knew Hernandez had a musical mind that overflowed with a love and passion for music. 

“I could also sense some frustration coming from him — too many musical ideas and not enough musical outlets. When it came to performing on violin, I could tell that he was only frustrated by technical limitations matching the music he was hearing in his head,” Schroter recalled.   

“Over the past three years, Chris matured in his ability and technique, and as he develops, he has also been able to explore new musical ideas,” Schroter said.

“Since Chris is a multi-instrumentalist as well as a digital music arranger and producer, I encouraged him to look into composition as a possible path.   He can sit at a piano or a guitar and score music for various instruments without having to be an expert performer on those instruments,”  Schroter added. The “Ciudadela” composition was one of the results.

RN4_6930If there’s a piano nearby, Chris will find it and begin to play. “The music is in my head,” he explains. 

“I wanted Chris and my students to experience the entire process without much interference from me,” said Schroter, who remained behind the scenes and allowed the creativity and collaboration to be “organic.”

From composition to concert performance, Hernandez was in charge of the composition, class rehearsals, score revisions and concert preparation.  Schroter met with his young composer few times to help guide his focus and give him some rehearsal advice, “But once he stepped on the podium, he was in charge of the process,” he said.  “This guy doesn’t hold back!  And if he is self-conscious, it is very hard to detect.   It reminds me of a child on a playground — having a blast, no hesitations, and just being caught up in the moment, enjoying life. When Chris is conducting on the podium, he just goes for it and it looks like he is having the time of his life,” Schroter said.

“I’ve been an orchestra director for 14 years. Sitting in the back of the class and watching Chris work with the chamber orchestra, seeing him light up when he hears his composition being performed by others, it gave me a sense of joy that I cannot put into words,” Schroter added.

The slender musician often paces when concentrating on a composition idea. He has numerous musical phrases collected on his smartphone and a stash of music manuscripts, ideas and musical themes that may one day find a home as part of a larger piece.  

His internal music calms him, even during his academic studies. “Whenever there’s a test, the themes help me stay focused and gets me into a certain zone,” he said.

Ricardo Hernandez smiled with his son’s admission. He sang to his son every night for months – before his birth.

“When my wife was pregnant, I would come home very late from work. I didn’t get home until after midnight,” the senior Hernandez recalled. He emigrated with his brother to the U.S. from Mexico City in 1994, and owns an auto mechanic shop in Macon, Georgia.  

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Chris plays his guitar as family sings Latin favorites at home.

“From the beginning, I laid my head on Sandy’s belly every night and sang to him. They were songs my dad and my mom used to sing. I come from a family where music was just a way of life,” he said.  

“I knew our son liked music because I could feel him kick when Ricky sang to him,” Sandra joked.

The musical immersion continued as Chris grew to toddler age. Ricardo and Sandy enrolled their son in music classes at a local Gymboree center. “As a two-year-old he loved to play the maracas and wooden rhythm sticks along with the music. I played my guitar for him at night, sometimes I played recordings of classical piano music like Beethoven, Bach, Mozart and Chopin to help him go to sleep,” Ricardo said.

“Chris was a very quiet child.  It was like I didn’t have a child,” Sandy Hernandez remembered.  “He was reading at the third-grade level when he was three years old. Chris spent all his time in his room surrounded by his books, sometimes not even wanting to eat dinner.  I was worried he may be shy and might get bullied so we tried baseball and soccer for him. That didn’t work, except for swimming — he loves to swim at the YMCA,” she said.

Sandra next found a piano teacher for her son. “He loved it and took lessons for six years,” she said. His piano instruction became the basis for all his other instruments and composing skills. “Every teacher he’s had said Chris has a special gift,” she said.

Chris Hernandez has fond memories of playing duets with his father. “My dad would play guitar and I would play piano,” he said. “The thing I admire about my dad the most is that he can blend in with any situation. He is a jack of all trades.”

When Hernandez turned eight, he wanted to play guitar like his father. “He showed me basic chords, and at first I didn’t really like it because of how hard it seemed. But I learned a lot from watching YouTube tutorials. It is very similar to piano, and once I figured that out I could play okay after a few months,” he said.  

As Hernandez entered his middle school’s music program, Sandra Hernandez purchased a saxophone and violin for him.  “Mom found them on Craig’s list. She knew I would make a connection to them somehow, “Chris recalled.

He studied both instruments and was soon exploring tunes far beyond the required repertoire. “I would listen to recordings and analyze the chord structure of songs. I picked out the notes. It wasn’t that difficult,” he said.

By high school, Sandy her husband knew their son needed more. “We went into our savings to buy a better violin. I knew music was so important to Chris and it would become his life, so we did everything would could to support him,” she said.

His fellow students universally describe him as energetic, immensely talented and passionate. “Chris has these rhythms and these notes that he just plays, they come out of him like magic,” one fellow student said.

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 Ricardo Hernandez  listens as his son Chris practices passages his guitar in his bedroom.

As Hernandez approaches his senior year in high school, his command of the guitar, violin and his singing voice is well evident. He leads the family as they happily sing Latin favorites together at home.

Once his high school days are behind him in 2019, Hernandez has his eyes on Berklee College of Music in Boston, where he plans to study musical performance and composition.

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Chris with supportive parents Sandra and Ricardo Hernandez.

He is undaunted by the school’s nearly $60,000 per year tuition and fees. “With the power of a scholarship and hard work, anything is possible. I know I can do it,” he said.  

He is torn between performance and composition. “Therein lies the rub,” he admitted. “The composing part of it is bringing something to life. It may have been influenced by others, but it’s coming from you, you’re the primary creator of it. With performance, you’re playing what someone else has created. Music is always subjective, and you’re putting your interpretation to it,” he said.  Though Hernandez loves to compose, his heart leans more toward performance.

“If I had to choose one, I would be playing with the Boston Philharmonic,” Hernandez said.  His family plans to have front row seats when that day comes, and perhaps Joel Schroter as well.

Changing Perceptions of Disability, One Latte at a Time

April 10, 2018

Kennesaw Georgia’s New Independent Grounds Cafe

 

Independent Grounds Cafe Champions People with Special Needs

Story and Photographs by Robin Rayne/ZUMA Press

©2018 All Rights Reserved

Kennesaw, GA — Gretchen Fuchs greeted her customer at the Independent Grounds Cafe with an engaging smile that lit up the room.

“Welcome! How may I serve you?” she asked.As the petite barista steamed the milk for her customer’s order, owner Lorna Heid leaned against a gleaming espresso machine and watched with pride, convinced her café can change the way people view those with developmental disabilities — one latte at a time. The 48-year-old single Kennesaw mom employs a mix of baristas and cashiers, several of whom are, in her words, “differently-abled” because of intellectual or developmental challenges. A few employees experience autism. Several more have Down syndrome, cerebral palsy or other challenges. Heid also hired a few staffers without a disability.
Independent Grounds Cafe Champions People with Special Needs

“We all have something, don’t we? We’re all special in our own way,” Heid said, her eyes twinkling.

She calls it the ‘coffee shop with heart’ and wants to help customers better understand the world of those living with special needs, as well as provide rewarding and fun jobs for her staff.

Heid’s 17-year-old daughter, Emma, is one of the café’s servers. She has a developmental disability and was the inspiration behind the café venture.

Independent Grounds Cafe Champions People with Special Needs

Emma Heid chats with a customer at the cafe

“I wanted to create a place where Emma can work and love it,” she said. Her daughter, now a sophomore at Kennesaw Mountain High School, contracted meningitis as a baby that caused brain damage and developmental delays, challenges she has worked to overcome. 

“As a parent you spend years dreaming about what your child can accomplish, but as a parent of a special needs child you often find yourself tempering those dreams. I wanted to show the community what Emma and all her peers can truly accomplish.” 

Heid briefly considered purchasing a fast food franchise so her daughter would always have a place to work, but was discouraged by the required investment and previous business experience.“About the same time, I saw a video about this woman who has two children with Down syndrome in North Carolina. She opened a coffee shop and hired servers with disabilities. I thought that was something I could do,” she said. Heid said she knew she would have support from the special needs community, especially here in Georgia. 

“Emma’s been in gymnastics since she was two years old and doing the Special Olympics. I knew the girls and young women she did gymnastics with would make great employees. I knew some of her fellow students at Kennesaw Mountain High School would make great employees. Their personalities would shine in a place like this,” she said.

Heid said her biggest problem was navigating the licensing requirements to open her business.  “A lot of hoops to jump though,” she said.

She remembered an older house in Kennesaw’s Legacy Park that had once been an ice cream shop.“Emma had her second birthday party here. It had been vacant for nearly four years when Emma and I stopped to see it. We visited just as a maintenance fellow was finishing up some work. I said, ‘I want this place,’” she said.

Heid left her insurance defense paralegal career in December. She leased the house off Jiles Road, completed her business plan, secured the state license, hired the café’s employees and learned everything she could about the art of making coffee. The café opened in early March.

 AN AUTHENTIC COFFEE EXPERERIENCE

 “I had to do a lot of research about the best espresso machines. They are very complicated and expensive, but I wanted it to be an authentic coffee experience for our customers. I didn’t want my employees to just press a button and a drink comes out. I told them ‘this is a real coffee shop and you are doing a real job. We are training you to have real skills.’ They have to know how many shots of espresso go into each drink, what flavors to add, the difference between a latte and a cappuccino, all these things,” Heid said. 

Independent Grounds Cafe Champions People with Special Needs

Gretchen Fuchs at the barista bar

The café’s machine is identical to those used throughout Europe, she said. The coffee beans come from a supplier in Smyrna who imports unroasted beans from several countries. 

“He knows his beans are ‘fair trade’ and of excellent quality,” she said. “He blends them and roasts them at his shop. The machine we have steams the milk perfectly and pulls the espresso shots. It allows our staff to make the drinks on their own, be creative, and serve a really good coffee.”

The menu consists of a variety of coffee and espresso-based drinks as well as pastries. The café provides free Wi-Fi and sells t-shirts and travel mugs as well as its own private blend of coffee beans. There are a variety of smaller rooms available for quiet conversations, study, work or just a place to read a book while enjoying their brew, with the subtle aroma of freshly ground coffee beans filling the house. The staff is cheerful and playful, clearly loving their jobs, their coworkers and their customers.

“Every employee brings something fresh to the team,” Heid said. “I have each employee try all the different jobs to see what they like best.”

Independent Grounds Cafe Champions People with Special Needs

When Meaghan Brox, 30, applied for a job, she hoped for work that was more challenging than wiping tables at a fast food franchise. “I didn’t like my job anymore. It didn’t challenge me. I worked there for 11 years,” Brox said.

Heid said she knew Brox was capable of more. 

 “She loves her job here. She’s so excited that she gets to greet her customers make drinks for them, and she keeps track of every drink she creates,” Heid said. 

Parents of special needs children must constantly make adjustments to their lives, Heid said. 

“When Emma was a baby, I went to mom groups, taking her to physical therapy, occupational therapy and speech therapy. We weren’t just doing play dates, we had doctor appointments and specialists.”

Once her daughter was in kindergarten, Heid realized life would take a path far different from what she envisioned. Independent Grounds Cafe Champions People with Special Needs

Lorna Heid, center, with a few of her valued staff

“As inclusive as the schools try to be, there’s only so much they can do,” she said. “As they get older you think about what they are going to do in life — how will they perform into society, will they be independent, or will they live with me?” Heid said. “Emma loves little kids and they love her. She’s like a ‘little kid whisperer.’ I always thought she could work in a day care place. But the day care would need to accept Emma’s limitations, and understand there were things she could do but there were things she couldn’t do or recognize.”“This café is a place where Emma can really take it and make it her own. The beans are even named after her — a private label from our supplier called ‘Emma’s Brew.’Independent Grounds Cafe Champions People with Special Needs

Meaghan Brox and Gretchen Fuchs prepare customers’ coffee orders

Independent Grounds Cafe Champions People with Special Needs

 GIVING HOPE

 Customer Nicolette Elommal lives near the café.  “As the mother of a special needs child, this café gives me hope,” Elommal said.  “It’s warm and cozy and welcoming, but what I love most is what it represents. My son is on the Autism spectrum and he’s pretty severe, but I’m hopeful for my son’s future.”

Heid is willing to share her café’s business plan with parents of special needs children in other communities so their children will always have a place to work.  “It could serve as a model,” she said.Heid’s younger daughter Katelyn, soon-to-be 15, looks forward to working at the café with her sister over the summer. “Siblings of special needs children sacrifice a lot, just as the parents do. I wanted to do this for both my children as well as for myself,” Heid said. “I wanted to show them that woman can do just about anything.”

Heid hopes other business owners will consider hiring more employees with disabilities. 

“It won’t affect their business negatively. It will only enhance their business, maybe even give them an edge,” allowing people with disabilities to become part of their communities, she said. As her business grows, Heid said the café’s hours will likely expand into evening hours. “I’ll need to hire more staff. I’ll need college students too. We’re all about inclusivity here, and we’re all a team.”

Independent Grounds Cafe Champions People with Special Needs

Emma Heid proudly displays the coffee blend named after her, ‘Emma’s Brew.’

Erika’s Long Road Back

March 18, 2018

Erika's Journey Home: The slow road to recovery from a brain tumor

Story and Photos © Robin Rayne Nelson/ZUMA Press

Erika Jones’ hand trembled as she gripped the pen to write a “K” on a sheet of paper taped to a table. Her attempt was slow but determined. “You’re doing it, Erika, keep doing it! Trace that K!” therapist Celeste Whirt cheered.

 Jones was relearning how to write her name at the age of 32. It was a small step on a long road to recovery from surgery that removed a brain tumor five months ago. 

 Jones was discharged from Shepherd Spinal Center in Atlanta in late January after several months of intensive physical therapy. She returned to live with her parents in Marietta and is now totally dependent on them for her care.

Joyce and John Jones continue to adjust to their new reality of caring for their brain-injured daughter. They are retired and living on fixed Social Security Disability incomes. Both have serious health issues of their own.

Erika's Journey Home: The slow road to recovery from a brain tumor

Joyce Jones, 64,  was an executive recruiter before a colon cancer diagnosis forced to leave her career in 2004. John Jones, 77, is a former bus driver for Cobb County Schools and former business owner.  They relocated to Georgia from Michigan in 1994 and attend Transfiguration Catholic Church in Marietta.  Erika Jones is a 2003 graduate of Lassiter high School and attended Middle Georgia College and Chattahoochee Technical College.  Prior to her illness she worked in marketing and media production in Norcross. She is the Jones’ only child together.

Erika's Journey Home: The slow road to recovery from a brain tumor

“Our lives were turned upside down,” Joyce Jones reflected.  “But I am committed to caring for my baby until the day I die.” “Her doctors called it a meningioma,” she explained.  “It was on the front part of her brain and around her spinal cord. They said it had been growing for at least ten years and had actually squeezed and moved her brain over. They were surprised she didn’t have headaches and vision problems earlier.”

The surgery left Erika Jones paralyzed on her right side and unable to walk. “Her speech is mostly babbling. She’s unintelligible except for a few words. She can say ‘Hi’ and ‘I love you,’ and she can nod her head to communicate ‘yes’ or ‘no.’ Her comprehension of what we’re saying wasn’t very good a few months ago, but she understands more now,” Joyce Jones said.

Erika's Journey Home: The slow road to recovery from a brain tumorErika Jones smiles and bops her head when she hears her favorite music. That gives her mother hope in the midst of uncertainty and fatigue from caring for both daughter and husband.  Their former sunshine-drenched dining room in now a bedroom for their daughter. It is large enough to accommodate a hospital-style bed and an electric lift that helps Joyce Jones move her daughter from bed to wheelchair and back several times a day. 

A large television was installed near her bed so Erika Jones has something to watch during the day. Speech and physical therapists visit several times each week to work with Erika Jones, who spends most of her day in her wheelchair or a recliner chair in the family room. 

Erika's Journey Home: The slow road to recovery from a brain tumorShe’s always strapped into her chairs to keep her from falling if she dozes off, “ Joyce Jones explained. She sponge-bathes her daughter, feeds her and routinely changes her diapers. She spends hours every day doing range-of-motion and other strengthening exercises Erika Jones’ therapists showed her. She is on constant lookout for bedsores and skin irritations. 

“I sleep at night on the sofa nearby so I can hear Erika if she moves, but I don’t sleep much,” she said. “Our bedrooms are actually on the second floor but it’s impossible to navigate with a wheelchair,” she explained. “John 

sleeps upstairs. He relies on oxygen because of his emphysema and doesn’t have much strength.” 

 “Our dining room was carpeted before Erika came back to live here. A friend bought sheets of thick plywood and screwed them down over the carpet so we would have a hard surface for Erika’s heavy bed, her wheelchair and the lift. That made it much easier to move things around,” she said.

Erika's Journey Home: The slow road to recovery from a brain tumor

A relative purchased a new multiple-position hospital-style bed and had it shipped from California for Erika Jones’ bedroom. Shepherd Spinal Center staff contributed the electric lift. One friend donated a large supply cabinet where Erika’s Jones’ extra diapers and bed pads are stored. Another friend installed colorful curtains in the doorway to provide privacy. A team of neighbors takes turns in supplying meals every few days to the Jones home. “We have such kind and loving neighbors. They’ve been bringing meals ever since this happened so I could just focus on caring for Erika,” Joyce Jones continued. 

“I couldn’t bear the idea of Erika living in a nursing home. She’s our daughter and we will do everything we can to help her get better right here. She wouldn’t get that love in a nursing home,” Joyce Jones said, wiping a tear. Erika Jones has had a number of visitors since her return to her parents’ home, including friends from her AAU basketball team who learned of her situation from a Marietta Daily Journal story in January. “She lights up when she sees her old friends,” she said.

Erika's Journey Home: The slow road to recovery from a brain tumor

Speech and language pathologist Whirt visits Erika Jones several hours each week for therapy that helps her relearn to speak. She guided Erika Jones’ hands to write her name on a recent session, encouraging her to push through the struggle as she helped her express herself verbally.

“She really wants to do things for herself. To Erika, the sounds she makes are words.  Erika has aphasia from injury to the part of the brain that controls speech.  She  knows what she wants to say but the words can’t get out. They are garbled. I’m certain that becomes very frustrating for her,” Whirt said.

“Our brains have this amazing ability to regenerate, especially at Erika’s young age. I work with Erika to help her find the right words. She can continue to improve for many years and nobody really knows how far she can go. 

I think one of the best things to help Erika is more visits from her friends. I’m sure she gets lonely,” Whirt said.

She expressed her concern for Erika’s Jones’ mother as well. “Just being able to leave the house for an hour or two with a friend while someone watches Erika is a big help.” 

Erika's Journey Home: The slow road to recovery from a brain tumorJoyce Jones admitted the constant caring for her daughter has chipped away at her own health.

“I know I’ve lost some weight. My friends are worried. I know I need help to care for her. Even using the Hoyer lift, it hurts my back to move her. We hope to have a home health nurse come several hours a day soon. We still hope to remodel the main floor bathroom, adding a shower that can accommodate her wheelchair. Until then, I’ll keep giving her sponge baths in her room,” Joyce Jones said.

After Erika Jones’ story was published in a local newspaper, readers contributed nearly $13,000 to a GoFundMe account to help with her expenses. Joyce Jones and her husband will use those funds toward a used van, modified to accommodate a wheelchair. 

“John hopes to sell our car and Erika’s car so we have enough for the van,” Joyce Jones said. “Erika’s therapists come to our home for now, but we’ll need to drive her to daily outpatient physical therapy in Decatur a few months when the home visits end. We’ll need to take Erika for doctor visits too.” “I can’t predict the future. Her doctors are very good but they can’t predict how she will do either. We just take it one day at a time,” she said.

Friends set up a GoFundMe site to help the family with Erika’s care expenses.  https://www.gofundme.com/%20%20erika-strong

Erika's Journey Home: The slow road to recovery from a brain tumor