Bethanie Allen: I was working with a kiddo at Schreiber, working on shoe tying. None of the stories I was using were amusing to him – the bunny ear thing, the tree and the rabbit – none of it was getting his attention.
I was starting the process over again – you know, doing the X – and I was, like, what can I do? And the thought of a pirate story just popped into my head . And every step after that was pirate related, this whole journey of finding treasure… it kept his attention the whole time. And he was able to repeat the directions back to me, which was awesome, because his attention was not the best.
I kept doing it quite a bit with him to watch the carryover. And then I started to use it with every kid I had shoe tying goals for.
DF: At some point, then, you had the idea to turn this into a story book?
BA: I actually think Bernie (Hershey) mentioned it right after I told her about it. And then it was one of those things that just sat in the back of my mind. I knew a visual cue would help carry the story even more.
I tried to send the story out to some publishers, and it wasn’t getting picked up, which was really defeating. I talked to my husband about, and I finally said, “We just need to self-publish this.” I wanted to get it out to more people, and I knew it would really have an impact for independent shoe tying
DF: You had to learn how to publish a book. How did that process work?
First, I had to find an illustrator. We ended up finding an experienced illustrator online, Toby Mikle. He was able to help guide me through the process.
We started in October, and it took about 3 months. He got the illustrations done really fast. It took a lot of re-editing and making lots of little changes, then I finally had to hit submit.
It’s an exciting process, but it’s filled with anxious thoughts: What is everyone going to think about this?
DF: The book is out now?
BA: Yes, the book was released Jan. 11. I’ve been marketing it through Facebook and selling it on Amazon, and I have a few printed copies that I can sell. I would love to have it stocked in therapy places or toy stores or book stores. I’m working on connecting with locally owned, mom-and-pop kind of places.
DF: How will it feel to come back to Schreiber with your book?
BA: It means so much to come back and do (the book event) where it all started. This might sound corny, but it’s almost like I’m following the map back to Schreiber.
It was so hard to leave Schreiber, I can’t even tell you… I’m married now. We have a great kid. I wouldn’t change it for the world. In a way, it’s like this book is a piece of Schreiber that’s with me all the time.
Bethanie Allen works at Kidswork Therapy Center in Union County. She lives near Lewisburg with her husband Josh and their 2-year-old son Braxton.
This is where AMBUCS comes in. AMBUCS is a national nonprofit “dedicated to creating mobility and independence for people with disabilities,” according to its website.
Most of the work nationally and locally involves helping families obtain Amtryke therapeutic tricycles. And that’s why Howard Livingston and Bruce Schmoyer visited Schreiber Monday morning.
Howard and Bruce are two longtime Lancaster AMBUCS volunteers, and they stopped in to assemble a new bike for Elizabeth Owens and her son, Dorian. They live in New Holland.
Dorian was born with hydrocephalus. While he was still in utero, fluid developed inside his skull. The resulting pressure caused brain damage that left Dorian with ataxic cerebral palsy, seizure disorder and deafness.
He has been coming to Schreiber since he was 2; he’s 16 now. He receives all three therapies here, including physical therapy with Laurie Panther.
She said if a child can propel the bike on their own or if riding helps him or her with their endurance or strength, they are a candidate to receive one of the bikes.
Laurie surprised Dorian with the bike that Howard and Bruce had just finished putting together. His eyes lit up when he saw it.
“This is a big deal for him,” his mom said as Dorian wheeled his new bike through Schreiber’s hallways. “It’s good for his coordination and his core muscle strength. And the biggest thing is the feeling of independence. This will be his bike for him to ride on his own at home.”
Laurie knew Dorian would be excited.
“We ride the bike we have every week here,” she said. “He asks to ride it. It’s his favorite thing to do. Being able to surprise him with it today was pretty cool.”
AMBUCS pays for them. A family or an organization such as Schreiber will put in the request. AMBUCS reviews the request and, if approved, orders the bike from Amtryke.
“We were (buying) about two or three a year up until about a year ago,” Howard said. “The local group decided we needed to ramp it up. We said we could do better. We bought 12 bikes just through our chapter in the past year.”
AMBUCS funds its local bike buying program primarily through an annual art auction, Howard said.
This was the fourth time Laurie has arranged for a family to receive one of the bikes, she said. It doesn’t get old.
“This was a huge deal for me today,” she said. “Most kids like riding a bike. This gives them the ability to ride just like their friends or their brothers and sisters. We’ve had kids go on bike rides with their family for the first time instead of being pulled in a trailer.”
Mom is probably already planning that first family ride with Dorian.
Sophia has cerebral palsy and struggles to control her body movements. Gaining muscle strength and control is important for her, as this will help her stand and walk. Because it is hard work, physical therapy is Sophia’s least favorite activity. The therapist has started working on relaxing techniques that will also help with movement control. Sophia’s mother helps her exercise and stretch during the therapy sessions.
“I’m right there with her,” Kelly says. “The best way for parents to help their kids is to be involved here. Therapy is only once a week, so you have to work on these things at home if your child is going to progress. Each month I come away learning something new.”
Kelly knows that with constant work Sophia will gain greater mobility and the skills necessary to live a better life. Sophia is able to move her own wheelchair to get around and has positive interaction with her peers at school. As she learns to better control her movement and speech it will improve her ability to communicate and interact with those around her.
Sophia’s condition requires more than one type of therapy. At Schreiber, Sophia is able to work on her gross and fine motor skills, develop her speech articulation, and learn important social skills.
During speech therapy, Kelly watches Sophia through an observer’s window.
“She’s come a long way with her speech.” Kelly says. “I learned different ways to help her make sounds that she has trouble pronouncing from watching the therapist work with her here.”
Kelly plans to enroll Sophia in Schreiber’s summer camp program and looks forward to meeting other families that may have children who will become playmates for her daughter. One way she hopes to develop relationships is through a newly formed parent support group. The group, which plans to meet monthly, was formed by parents who want to network, encourage and connect with other families experiencing similar challenges.
“I’m glad we’re at Schreiber because there aren’t a lot of places that offer this kind of support,” Kelly says. “Everything she needs is right here. And all the therapists show concern for Sophia and for us as a family.”
at 3 months
The whole process started in December 2014, when Teddy’s mom, Jaclyn Rhoades, had submitted a proposal to Elizabethtown’s Engineering Department asking if students there could design a vibrating device to improve Teddy’s muscle tone.
The three students — Jake Evans, David Good and Buck Kauffman — were intrigued enough to take on the project. They met with Jaclyn to find out what problems the therapists had and what they could do to help them. They found that creating a hands-free vibration device would make therapy easier for everyone involved.
Teddy suffers from hypoxic brain injury, brain damage from lack of oxygen. His mom found him face down in his crib when he was 3 months old, blue and not breathing. She revived him, but the damage left him with cerebral palsy, which affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.
Megan has had success working with a hand-held vibrating device during home visits to Teddy. The vibrations stimulate the muscles to activate spine and trunk erection. The students observed one of these visits and saw what a struggle it was to hold Teddy and use the device. They thought a vibrating vest might free up their hands and make the session easier and more productive.
They started working on the design in January 2015 and began prototyping this past January. They bought a child’s life jacket, tore out the inflatable material and built the motor, powered by two AA batteries. The installed motor could be moved to different areas of the vest, depending on which area of Teddy’s back was the target for the vibrating.
Total cost of the materials: $50.
A successful test
On the day of the test, David, Buck and Jake stood behind Mom as Megan and Alissa snapped on the vest and flipped the switch.
Nothing happened. The vibrations weren’t hitting the right spot.
Megan moved the motor up higher on Teddy’s back and tried again.
Right away, Teddy began to slowly straighten up, as if his head and shoulders were connected to some unseen strings from the ceiling.
Jaclyn’s face lit up in a smile, and the three students reacted with something approaching astonishment.
“Sweet!,” Jake said. “It’s doing exactly what we thought it would do.”
“It’s kind of surprising to see, actually,” Buck said.
“Definitely a good feeling,” Jake added.
And Teddy? He just took in his new view of the world, scanning the smiling faces that surrounded him, probably wondering what all the fuss was about.
Age: born 3/21/97 (18, turning 19 in March)
Diagnosis: Autism spectrum disorder
Parents: Reenie and Peter Panzini, Manheim Township
Siblings: Edward, 20; Carina, 10
Favorite activities: Listening to music, adult coloring books, playing games on the Wii, collecting jewelry
What she watches and listens to: The Food Network, “Spider Man” movie, Destiny’s Child
Favorite food: “Mac and cheese – gluten-free, please!”
When she grows up she want to: “Be a Hollywood singer.”
Three words to describe her: Beautiful, sweet and funny
What else to know about Sophia: She attends Schreiber’s Club 625 events, making friends and being a teenager.
Like a lot of kids with autism, Sophia Panzini is reluctant to look people in the eye when she talks to them. But when she’s posing for a picture, she loves the camera — and the camera loves her.
Here’s her story, in the words of her mom Reenie.
“Sophia was diagnosed with autism when she was 8, and we had just moved to Lancaster from New York City. Her pediatrician told us about Schreiber, and we practically ran there! We didn’t know anything about therapy or autism, and we were literally walked slowly through everything step by step. Sophia learned to have conversations, hold writing instruments, walk up and down stairs without crying, and so much more. We (as a family) learned that we’re stronger than we thought, and that you can get through anything with enough love and a lot of humor.”
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.”
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.”
Age: She turns 5 on March 28
Diagnosis: Cerebral palsy
Parents: Kelly and Adam Clay of Manheim Township
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.
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.
That green light means the Center can move forward with plans to build the bike path on the Schreiber campus along Good Drive. Schreiber raised more than $75,000 for the project through fundraising and in-kind contributions, enough to cover the construction costs and to create a fund for ongoing maintenance costs. The largest piece of the fundraising came from the Stabler Foundation, which provided a $60,000 gift.
We’d also like to acknowledge the generous support of the staff at two local companies. Todd Vaughn, senior project manager at David Miller/Associates, a landscape architecture and civil engineering firm, and Paul Nikolaus, an architect with RLPS Architects, spent countless hours drafting and revising plans as they navigated the municipal approval process — and neither firm has charged us one dollar.
The bike path will represent an important upgrade to our facility and to the resources for our Therapy Department. For years, kids have had to ride bikes through Schreiber’s hallways or in a small corner of our parking lot — hardly ideal.
That all changes this year. We will be able to break ground in the spring and complete construction by the summer.
We can’t wait.
How did Star Wars Week at Schreiber come to be?
Go here for a surprise.
“One of the biggest things Luke Skywalker had to do to be a Jedi,” Bernie says, “was to learn to control his reactions to frustration that would make him upset and angry activate the Dark Side. So we will be using that hook with many of the clients who are learning to conquer new daily routines that are hard, like tying shoes.”
That’s just the start of what Star Wars Week at Schreiber will offer.
“Jedi knights have to learn balance and core strengthening activities, so we will have the Jedi Training obstacle course,” Bernie says.
“Jedi knights learn how to use their abilities to positively sway others, we will be practicing social skills.
“Jedi knights learn other languages. We will have some select Yoda and Darth Vader expressions for the children to listen to and imitate.
“Of course there will be Storm Troopers to target, and we will be using our powers of observation and visual scanning as well to be aware of hidden dangers.”
The entire center will be turned into a Jedi Training Center to help celebrate Schreiber Pediatric’s 80th anniversary year this year. The multipurpose room will be the main area decorated in the Intergalactic mode, but already Speech Therapists have their lighting up and Physical Therapists have begun their decorations.
Update: Some folks from the Central Pennsylvania Avengers will be on hand Thursday afternoon, Jan. 28. Jason Johnson is director and founder of the group, which consists of adult hobbyists who dress up in superhero costumes and do appearances to entertain. Their motto is: “We came, we saw, we made smiles.” Expect to see a Kylo Ren, a Rey and a Darth Vader (non-scary variety) roaming the halls of Schreiber that day.