Ambassadors

Meet the 2016 Ambassadors: Ty McCabe

Tiberius “Ty” McCabe

Age: He turned 6 in December
Diagnoses: Pierre Robin Syndrome, Pterygium Syndrome, hearing impaired, speech and language impaired
Grade and school: Schreiber S.T.A.R.S. Preschool
Parents: Kevin and Margaret McCabe, Lititz
Siblings: Delaney, 12
Favorite activities: Playing with Delaney; playing with trains, tractors and monster truck toys; playing ABC Mouse and tabletop games with the nurses; video games
Favorite food: Pudding
What he watches and listens to: On TV, he likes “Magic School Bus,” Mr. Rogers, and SpongeBob; for movies, he likes the “Air Bud” series; favorite song is “The Wheels on the Bus”
When he grows up he wants to: Be a pilot or drive monster trucks
Three words to describe him: Outgoing, determined and happy

For the Ambassador photo shoot, Ty McCabe came prepared. He rocked the white hat and black bow tie. When it was his turn, he plopped down in the comfy chair and faced the camera, his whole demeanor saying: “I’m ready. Let’s do this.”

That’s Ty: spreading smiles and good vibes whenever he comes to Schreiber. Which, as it turns out, is a lot. He’s here for preschool, and he receives physical, speech and occupational therapy.

He was born with a couple of different conditions: Pierre Robin Syndrome, which left him with a smaller-than-normal lower jaw, issues with his tongue and feeding problems; Pterygium Syndrome, which carries several symptoms but primarily affects his joints and bones; and he has hearing, speech and language impairments.

During therapy and at home, he works on stair climbing, bike riding and dressing himself. He practices fine motor skills like writing, using scissors and feeding himself. He’s trying to improve his speech and his signing skills. Since he started at Schreiber, he has learned to walk without a walker, is able to form some words and is eating Stage II foods, the thicker, chunkier foods that replace purees.

“(He is preparing) for mainstream education at the highest functional level of independence,” his mom Margaret says. “We have seen academic improvement despite many hospitalizations, surgeries and medical appointments.”

Meet the 2016 Ambassadors: Graham Lodwick

Graham Lodwick

Age: He turns 12 in August
Diagnosis: Deaf and childhood speech apraxia
Grade and school: Fifth grade, John Beck Elementary School
Parents: Wendy Williams and Karl Lodwick of South Lebanon Township, Lebanon County
Siblings: Graham has an older brother Reese, 14
Favorite activities: Playing with pets, playing video games, bowling and riding his bike
Favorite food: Pizza
What he watches and listens to: “Drake and Josh,” “Minions,” the song “The Best Day of My Life” by American Authors
When he grows up, he wants to: Be a car designer
Three words to describe him: Happy, silly and loving

Graham has been coming to Schreiber for speech therapy since he was 6. Dorlas Riley, Schreiber’s lead speech therapist, diagnosed Graham with speech apraxia. The condition is defined this way by the American Speech-Language-Hearing Association: Graham knows what he wants to say, but his brain has difficulty coordinating the muscle movements necessary to say those words. He’s also deaf and has a cochlear implant.

So in his twice-a-week therapy at Schreiber, he practices his speech sounds and works on listening to get the best use of his cochlear processor. He’s also working on talking in complete sentences. The work is paying off. When he started with Dorlas, he communicated entirely by signing.

“(Now), he can carrry on a conversation with someone who does not use sign langugage,” says his mom Wendy.

It takes a lot of effort to make that kind of progress. But his therapy with Dorlas doesn’t seem like work.

“He loves it,” Wendy says. “Even after six years, he still looks forward to coming.”

Meet the 2016 Ambassadors: Sophia Clay

Sophia Clay

Age: She turns 5 on March 28
Diagnosis: Cerebral palsy
Parents: Kelly and Adam Clay of Manheim Township
Siblings: None
Favorite activities: Playing with her toys, going to the beach, watching movies on her iPad, riding her bike around the neighborhood and seeing plays at local theaters.
Favorite foods: Pizza and ice cream
What she watches and listens to: Disney movies, “Doc McStuffins,” “Sofia the First,” princess movies
Three words to describe her: Happy, outgoing and determined
What else to know about Sophia: She has a black lab named Dallas.

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Sophia Clay and her mother, Kelly, attended a Schreiber board meeting late in 2015, and Sophia charmed the room with her smile and her spirit. Sophia’s cerebral palsy means she uses a wheel chair for a lot of her day. Her therapy at Schreiber is intended to help her be out of the chair more. “She’s working to become stronger in all areas of her life,” Kelly says. “She practices with a gait trainer so she can stand on her own. She works on sitting up without assistance. She practices her fine motor skill, her articulation and eating on her own.”
It’s the articulation — how clearly she speaks — where Sophia has shown the biggest progress, her mom says.
“Sophia’s language has come a long way,” Kelly says. “When she started, she could only say a few things. Now, she can say 10-word sentences.”
And that’s just the beginning. With her determination, she will be ready to make speeches in her class when she starts school.

An aspiring actor with Down syndrome

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Inside one of the Fulton’s classrooms, Alex is one of a half-dozen or so kids seated around a circle on small carpet squares. Teacher Amy Kaye Mullen runs the kids through a series of acting exercises.

When it’s time to be a fish or an alligator, he jumps right in. When it’s his turn in a role-playing exercise, he grasps the idea and gives it his best shot. No big deal.

This is what he wants to do, Lisa says.

“He doesn’t really play with toys much,” she says. “He’s very imaginative and does a lot of acting in his play. We’ll watch a movie, and he’ll say the lines and act it out right along with the movie.”

She saw the Fulton was offering acting classes, so she called Jennifer Ridgway, the Fulton’s director of community engagement. Lisa told her about Alex, and Jennifer said to come in for a meeting.

“We took him in, and it was like a little audition,” she says. “(She tells Alex), ‘Can you be a fish.’ So he did a couple fish things” — and Lisa points her hands in front of her to mimic swimming — “and she says, ‘See you next Saturday.'”

Having kids like Alex in the Fulton’s acting classes is part of the theater’s effort to provide inclusive experiences for the community, Ridgway says. It’s the same thinking that prompted the Fulton to partner with Schreiber in offering sensory-friendly programming.

In the past year, it added Sugey Cruz-Everts from the Tommy Foundation to its Community Engagement Advisory Board. The Tommy Foundation is a nonprofit that provides support for families with an autistic child.

That could lead to new programs to serve the autism community, Ridgway says.

For the Johannings, an acting class is more than just a fun activity for Saturday mornings. They drop off and leave, which they had never done before (Mom was a little nervous). And maybe more importantly, the classes support their strategies to continue his social and emotional development.

“He learns to follow the rules of the session: We greet our friends; we listen to the teacher; we follow directions,” she says.

Like a lot of parents of children with special needs, Lisa worries about how he would make friends and whether kids would be mean.

For her, having Alex in acting classes with typical kids and mainstreaming him in public school have helped break down the obstacles that might otherwise have existed in his efforts to socialize.

“When we were in school, kids like Alex were in special ed,” she says. “We didn’t see them. (Alex) is making friends here and in school. He’s growing up with them. He’s just one of the kids.”

Feeling like he’s just one of the kids will make a huge difference as he grows into adulthood and starts chasing that acting dream.

And that is a big deal.

2015 Ambassadors: Sienna Matthews and Anthony Melendez

Sienna Matthews

Age: 4
School: Circle of Friends Academy Daycare
Parents: Ashley Shank and Cord Matthews, Lititz
Favorite foods: spaghetti and pizza
Favorite activities: therapeutic riding, dancing and playing with Play-Doh

SiSi has been coming to Schreiber since she was 18 months old. Her mom Ashley says SiSi was diagnosed with symptoms related to cerebellar ataxia syndrome. People with this diagnosis might show several of a broad array of symptoms, all of which are tied to abnormalities in the cerebellum, an area of the brain generally associated with motor skills. SiSi came to Schreiber to improve her balance and coordination, her leg and core strength, the clarity of her speech and her hand-eye coordination.

To work on all that, SiSi receives physical, occupational and speech therapy. Ashley says SiSi couldn’t walk when she started at Schreiber.

“Now, she can run, something we’d never thought would do,” she says.

In addition to therapy, SiSi attends the Circle of Friends Academy early learning center, attended by kids with challenges and their typically developing peers.

Through it all, SiSi keeps improving.

“I am so thankful for the Schreiber Pediatric community, and so is (SiSi),” Ashley says. “She loves going to Schreiber every day. I know the best choice I ever made for my child was sending her to Schreiber.”

Anthony I. Melendez

Age: 4
School: Preschool at Schreiber Pediatric
Parents: Jennifer L. Melendez, Lancaster, and Peter I. Melendez (deceased)
Favorite activities: He loves to color, practice writing his letter — anything that has to do with colors, shapes and letters.
What he watches: “Kipper the Dog,” “Pocoyo,” “Finding Nemo.”

Anthony Melendez has had a pretty tough time in his 4-1/2 years. He was born with several serious medical issues. He is still battling a hearing loss in one ear, a feeding disorder, low muscle tone and chronic lung disease. And he has speech and language delays.

On top of that, the family lost Anthony’s dad Peter following a terminal illness when Anthony was 3.

Anthony doesn’t let any of that stop him from being at therapy twice a week. He works on sounding out words. He works on strengthening his core and learning to hold a pencil correctly or use scissors.

And he has a ways to go to overcome his food aversion; he still has a gastronomy tube to make sure he’s getting the nutrients he needs.

“Anthony has come so far and continues to amaze me,” his mom Jennifer says. “His vocabulary is so much better. He has much more confidence in himself. He is running around with his friends and jumping on the bed like a typical 4-year-old.”

He certainly ran around like a typical 4-year-old during the photo shoot here, and he was a little wiggly for the photographer. It didn’t faze Jennifer, who has certainly had far worse to handle during the past few years.

“I have no doubt that he can accomplish anything and everything he wants,” she says.

Meet the 2015 Ambassadors: Alex Johanning

Alexander Johanning

Age: 8
Grade and school: 2nd grade, Lampeter Elementary
Parents: Lisa and Tim Johanning, Lancaster
What he watches: “Sophia the First,” “Beauty and the Beast”
When he grows up he wants to: Be an actor.

Alex was born with Down syndrome, a genetic chromasomal disorder that causes intellectual disabilities and developmental delays. He started coming to Schreiber at a young age, and he receives occupational and speech therapy to help him speak more clearly (he loves to talk) and to improve his physical strength and stamina. He’s also working on some of his fine motor skills.
His parents provided a list of goals and strategies – four pages worth – that they wanted Alex to aim for in 2014. They also keep him busy with Cub Scouts and acting classes at the Fulton Theatre.
OT Kim Martin and speech therapist Abby Zell noticed the parental support.
His family has always had high aspirations and goals for him, and they see Alex being successful in his various activities.
“He is also an example of how his hard work is paying off,” they wrote.

Meet the 2015 Ambassadors: Emily Graver

Emily Nicole Graver

Age: 12
Grade and school: 7th grade, Marticville Middle School
Parents: Tim and Kerry Graver, Holtwood
What she watches and listens to: “Duck Dynasty,” “Sponge Bob,” “The Croods” and Taylor Swift
When she grows up she wants to: Be a veteranarian.

Emily started coming to Schreiber after surgery in December 2012 to remove part of her brain. “The left side of my brain,” she wrote in her paperwork. “To control my seizures.”
Doctors and therapists call this a hemispherectomy, and it was done to treat Rasmussen’s syndrome, an inflammation of the brain that causes uncontrollable seizures. With part of the left side of her brain gone, Emily had to regain the use of her right arm, hand and leg. She had to learn to walk and talk again.
And she’s doing it.
She can walk without a walker or a cane. She can go up and down stairs – “sometimes without holding onto the rail,” she wrote. She can speak more clearly.
Her parents, Tim and Kerry, describe her as outgoing, caring and kind. And, they said, she still gets excited about coming to therapy.
“Emily is a walking, talking miracle,” wrote Laurie Miller, her Schreiber physical therapist, in her nomination form. “After being told she would never would walk again, Emily decided she was going to prove everybody wrong. She is a very spunky, hard-working and persistent kiddo who has found a way to overcome every challenge. She loves to sing and perform and has a wonderful and inspirational zest for life. We have fun every week, and it has been a blessing to watch Emily progress from using a walker to doing ‘high knees’ in the pool. She demonstrates what we strive to do here at Schreiber every day – ‘turn disabilities into abilities.'”