An aspiring actor with Down syndromeMarch 11, 2015
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.
THON starts today at Penn StateFebruary 20, 2015
A child who receives treatment for a brain tumor might need to relearn how to walk or talk, or they might acquire cognitive impairments or learning disabilities. They might have poor hand-eye coordination or behavior problems.
Schreiber therapists see these issues every day. We know the toll that cancer can take on little ones. We say a heartfelt thank you to all those involved with THON through the years, especially the Penn State students past and present, who have helped raise money and awareness in the fight against pediatric cancer.
Because while we’re in a position to help these kids today, we would be thrilled if somebody found a cure for childhood cancers tomorrow.
So, Penn State students, please keep up this fight.
2015 Ambassadors: Sienna Matthews and Anthony MelendezFebruary 6, 2015
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
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 JohanningFebruary 3, 2015
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 GraverFebruary 2, 2015
Emily Nicole Graver
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.'”