Every child deserves the opportunity to lead a healthy and fulfilling life. At the Schreiber Center for Pediatric Development, we are committed to ensuring that every child, regardless of their abilities or financial circumstances, has access to the quality care they need.
The ExtraGive event (https://www.extragive.org/) is a remarkable opportunity for us to come together as a community and make a significant impact on the lives of children who rely on our pediatric therapy programs. Your generous donations during the ExtraGive event will directly benefit our occupational, physical, speech, and mental and behavioral health therapy programs, as well as our “Kids’ Care Fund” designed to cover uncompensated care expenses.
Pediatric Occupational Therapy: Feeding Program
Pediatric occupational therapy is a crucial component of the services we provide at Schreiber Center for Pediatric Development. Many children face challenges related to feeding and nutrition, and our goal is to support them in developing the necessary skills for a healthy diet. Your donations will help us establish a new feeding program that will provide personalized support to children with various feeding difficulties.
Feeding issues can be a source of tremendous stress for families, and your contributions will make it possible for us to offer specialized therapy, equipment, and resources to help these children develop the skills they need to thrive.
Pediatric Physical Therapy: Medical Mobility Equipment
Children with mobility impairments often require specialized equipment to enhance their mobility and independence. The funds donated during the ExtraGive event will be instrumental in acquiring essential medical mobility equipment for our pediatric physical therapy program.
These devices can be life-changing for children, enabling them to participate in everyday activities and improving their overall quality of life. Your support will help us ensure that no child in central PA is left without the necessary equipment to navigate the world around them.
Pediatric Speech Therapy: Communication Devices
Communication is a fundamental aspect of a child’s development, and for some children, it can be particularly challenging. Our pediatric speech therapy program is dedicated to helping children develop their communication skills, and your donations will play a pivotal role in achieving this goal.
We aim to provide augmentative and alternative communication (AAC) devices, speech-generating devices (SGDs), and other assistive communication tools to children who need them. These devices empower children to express themselves, connect with others, and engage with the world in meaningful ways.
Mental and Behavioral Health Therapy: After-School Social Programs
At Schreiber Center for Pediatric Development, we recognize the importance of mental and behavioral health in a child’s overall well-being. Your donations will support our after-school social programs, including the popular “After-School Lego Club,” designed specifically for children with autism.
These programs offer a safe and supportive environment where children can develop social skills, build friendships, and gain confidence. Your contributions will enable us to expand these programs, reaching even more children who can benefit from them.
The “Kids’ Care Fund”: Ensuring Access to Care for All
In addition to directly supporting our therapy programs, your generous donations during the ExtraGive event will be added to our “Kids’ Care Fund.” This fund serves as a safety net, ensuring that all disabled children receive the care they need, regardless of their families’ financial circumstances.
The “Kids’ Care Fund” is a savings account that bridges the gap between what private insurance and Medicaid supplements cover and the actual cost of care. At Schreiber Pediatric, we have always made the promise that no child will be turned away, and your contributions help us fulfill this commitment.
Your support during the ExtraGive event will have a profound and lasting impact on the lives of the children we serve through our pediatric therapy programs at Schreiber Center for Pediatric Development. Whether it’s helping a child improve their feeding skills, providing essential mobility equipment, enabling communication, or fostering social connections, your generosity makes it all possible.
Furthermore, your donations will contribute to the “Kids’ Care Fund,” ensuring that no child is denied the care they deserve due to financial constraints. Together, we can make a difference in the lives of Schreiber kids and their families, offering hope, support, and a brighter future. Join us in transforming lives and creating a more inclusive and compassionate community for all children in central PA. Donate during the ExtraGive event and be a part of something truly extraordinary.
“Go Big or Go Home” says Schreiber client, Javion Rodriguez, who went big this summer when he played in the Little League World Series Challenger Series. For 30 years this series for kids and teens with physical or mental disabilities has invited the best teams in the world to compete, and for the very first time a local team from Lancaster, PA received the invitation.
As one of the older members of the Lancaster PA team Javion says he feels like a role model and leader amongst the team and takes his position seriously. There is part of him that can’t wait to play in the senior league and really show the world what he’s capable of though. When asked what his favorite part of the game was, he had a difficult time choosing his time at shortstop or batting. He settled on the excitement of batting when he recalled his favorite part of the LLWS game was when he was walking to the plate for his at bat and received a standing ovation from the crowd.
In the off season, Javion works on his fielding skills and hitting off a T in his yard at home. During his physical therapy sessions here at Schreiber he prefers to work on specific exercises that will help strengthen the muscles needed to improve his game. Strengthening his core and improving his stance and swing are his personal physical therapy goals right now. Under instruction and supervision of his therapists here at Schreiber, Javion uses weights during rotation exercises designed to strengthen his obliques and performs a modified foam roller plank to strengthen his arms, legs, and core all while working on improving his coordination.
His passion for all things sports has helped him secure his current job as a sports analyst, interviewing and reporting on players, writing articles, and even doing a bit of marketing for a local ‘backyard’ baseball league. Currently a Freshman at McCaskey with straight A’s and an interest in math, Javion plans to graduate high school, go to college and play baseball in the Challenger League for as long as he remains a student. We have no doubt Javion Rodriguez will always “Go Big”!
To help Schreiber Clients like Javion continue to receive the care they need, consider donating in support of our uncompensated care fund.
As a nationally recognized pediatric facility, the Schreiber Center for Pediatric Development provides family-centered education and therapy programs for infants, children and adolescents with disabilities, developmental delays, and acquired injuries. Our goal-oriented approach maximizes each child’s ability to function independently within the community.
Thank you to everyone who came out to celebrate our 35th Annual Rubber Duckie Race & Festival on September 10, 2023. It is because of the generosity of our sponsors, duckie adopters, and donors that this event raised more than $130,000!!
We are overwhelmed by the support our community shows us every year through monetary gifts and volunteering. You may not know this but, for every hour of therapy that a child receives at Schreiber we lose about $74. You see, we are one of the only pediatric therapy centers in Central Pennsylvania that takes Medicaid as a form of payment. We do that so that every child, regardless of their family’s ability to pay, has the opportunity to receive the care and services that they require to live their lives to the fullest.
What you might not know is that Medicaid provides the lowest reimbursement amount of any insurances. With 95% of our kiddos on Medicaid (regardless of their family’s financial status) that means that we run at a deficit of about $2 Million per year that we must make up for with fundraising and grants.
Not only did this year’s event raise a record amount of funds for our center, but we also had over 150 people volunteer their time and talents to help us run the festival. Local companies like Citadel Credit Union, Member’s First Federal Credit Union, Murray Insurance, and Re-Bath of Lancaster had company employees volunteer their time running different games and arts & craft stations throughout the festival. We also had students from Hempfield, Manheim Township, and Warwick School Districts sign up to volunteer with us, as well as many incredible community individuals who helped with set up, tear down, duckie & ticket sales, games, and everything in between. To everyone who volunteered with us at this event we thank you!
Speaking of setting up and tearing down, our vendors deserve a huge thank you too, especially Shumaker PDT who came to our center to pick up all the materials we needed to run this event and not only delivered it to the park for us on Sunday, but also handled set up and tear down of the larger aspects of the event with the help of Utility Vehicles provided by Messick’s. Of course, we can’t forget about Good’s Disposal generously providing the dumpsters for post event clean up and disposal!
We cannot thank the Lancaster County Department of Parks & Recreation and Lancaster Bureaus of Fire & Police enough for donating their time to the 35th Annual Rubber Duckie Race & Festival. Their presence at the event was instrumental in making sure that the event was safe for everyone!
A special thank you to all our food truck vendors who came out in record numbers to serve our guests some delicious savory and sweet treats! Food truck alley was the talk of the event and the consensus among event goers was that they loved the variety and having so many different options to choose from. When it comes to kids, you know options are always important! Thank you to Au-Sam’s Trolly Stop, Brickers, Cupcakes by Casey, Farm Show Milkshakes, Italian Job Food Truck, Kona Ice, Nacho Depot, On the Grind Coffee, Philadelphia Hoagie Co. On the Roll, Scoops Ice Cream & Grill, Stoney’s Burgers and Fries, and Tri-County Barbecue Catering!
Of course, our sponsors also deserve our thanks and gratitude not only for their monetary donations towards this event but also for helping to get the word out so that more families could come and enjoy the fun and festivities with us! 2023 Ambassador Harper become quite the TV star appearing in a commercial underwritten by presenting sponsor Lancaster Toyota. As a result of our 20 year partnership with Re-Bath of Lancaster Harper was also highlighted on Good Day PA both to promote our event to local families and friends of Schreiber.
We hope that all the Schreiber families and community members who came out to the event had a blast playing games, dancing to music provided by DJ Matt Haines, making arts & crafts, meeting Miss Pennsylvania Miranda Moore, getting their very own balloon animal from The Balunguy, and learning a little more about what we do here at Schreiber. We love meeting new people and telling them all about our mission and our goals, but what we love even more is showing our community just how amazing our Schreiber clients really are. We think that the Duckie Race & Festival is a great way to bring everyone together in a fun way to do just that!
If you stayed for our rubber duckie race this year you already know that the dropping of the duckies was almost rained out, but we decided to brave the weather for our most anticipated moment of the day. We were very lucky that the rain held off as long as it did so that we didn’t have to worry about the water levels in the river risking the safety of our duckie catching volunteers, and that the lightning stayed away.
Walker Sales & Distribution once again provided us with the perfect duck box, and JC Snavely & Sons came in clutch with the crane, so that our 2023 Ambassadors Harper and Katelyn could pull the rope and release the rubber duckies into the Conestoga River from the Strawberry Street bridge to start their race. Our friends over at the Conestoga River Club, Chris Fletcher, and Isaac’s Restaurant were fantastic at catching all the finish line duckies and making sure that any escaped duckies were quickly found and caught.
Overall, we think that this year’s Rubber Duckie Race & Festival was a whirlwind of family fun and excitement with a whole lot of delicious foods thrown in for good measure, and we hope that everyone who came out and participated in the event in any capacity feels the same.
Thank you again to everyone for helping make this year’s event one to remember. If you share any pictures or memories from the event please tag us so that we can enjoy them too. If you would like to share any pictures or memories with us directly please feel free to email our marketing manager, Alexandra Cahill, at email@example.com. We can’t wait to see you all again next year!
As a nationally recognized pediatric facility, the Schreiber Center for Pediatric Development provides family-centered education and therapy programs for infants, children and adolescents with disabilities, developmental delays, and acquired injuries. Our goal-oriented approach maximizes each child’s ability to function independently within the community.
Sam Leon-Durkee started a recent physical therapy session working on a piece of equipment called a Galieleo vibration plate. He sat down on a bench, put his feet on the plate and, with the help of his physical therapist, Rachel Saufley, worked on standing up.
Sam was diagnosed with cerebral palsy at 18 months. He’s 12 now, and does a lot of work to increase his flexibility and mobility. The vibration plate helps reduce the muscle spasticity, or tightness, associated with CP so he can have a more effective therapy session.
Schreiber acquired the vibration plate in December thanks to a grant from the Gamber Foundation. Rachel said she uses it with Sam to help stretch his hamstrings. Sam put it a little differently.
“It’s something new to torture the kids,” he said. “And by torture I mean help.”
He said it like he says a lot of things: with a mischievious smile.
His cerebral palsy makes it hard for him to walk or hold a pencil to write his name. But it has done nothing to hinder his social development.
He’s a talker, a natural storyteller with a vivid imagination and a quick sense of humor. His mom Casey Trone said Sam wants to work at Marvel Comics in New York City.
“I think he’s going to single-handedly write the next Marvel movie,” she said.
That’s the plan right now. For that to happen, there’s still a lot of work to do. Given how far he’s come, though, nobody would bet against it.
Sam was born prematurely in August 2009 and spent five months in the neonatal intensive care unit at Hershey Medical Center. Casey said she started Early Intervention services with Schreiber as soon as she received the diagnosis.
The EI services continued until he was 3. He had a muscle-lengthening surgery at age 4, which helped him make a lot of progress. A year or so later, he returned to Schreiber to resume physical therapy. Around the same time, he started school, first enrolling in Head Start when he was 4 and then starting kindergarten the next year.
“I was a little reluctant,” said Casey, who lives in the Penn Manor School District. “I would have liked to have a little more time for him to develop physically. But he did really well in kindergarten. He’s had an aide with him every year, so the support has been really good.”
He has continued to do well in school, including his middle school years at Manor Middle School.
“He has shocked me,” Casey said. “I remember when I first got the diagnosis of CP, I had no idea what was going to happen. There are so many different forms of the disease. I went so far as to have weight-loss surgery because I didn’t know whether I was going to be able to take care of him. But he’s doing very well.”
A lot of that she attributes to their experience at Schreiber.
“It’s helped me to understand what is possible and what to do and how to take the next step with him,” she said, her voice cracking and a tear rolling down her face. “My life now is to get him to be the best he can be.”
The physical challenges haven’t been the only ones for Casey, Sam and Sam’s twin sister Isabelle. The twins’ father, Henry Leon-Rivera, passed away in 2016. Two years later, Casey brought Mike Trone into their lives.
“They were just about to turn 8,” Mike said. “When we met the first time, we went out for ice cream. We talked a lot about the ‘Cars’ movies. He’s a smaller guy, and he was even smaller then. But he can talk. He knows what he’s talking about. And he has comedic timing. He’s full of life.”
Now it was Mike’s turn to wrestle with his emotions, and he reached over to grasp Casey’s hand.
“I’ve learned so much from him,” he said finally. “I didn’t know anything about CP when Casey and I met. I guess I had a picture in my mind. And he was nothing like that. Resilience is how he approaches day-to-day life. He’s definitely changed my outlook on the world.”
And now the three-person family is four: Casey and Mike married in 2021. She’s financial coordinator with the Library System of Lancaster County. He’s a Realtor with Keller Williams Keystone. Together, they are rebuilding life as a family. And coming to Schreiber to help Sam become his best self, to fulfill his plans of telling the next stories in the Marvel universe.
“I work really hard every day to give Sam the best life I can,” she said. “And I know he meets me halfway to give his best. We all do what we gotta do, and we’ll get there.”
Ellery McIndoe has had challenges most people can’t imagine. She also has lots of personality, a big, bright smile and a ton of can-do spirit. In the scheme of things, the challenges don’t seem to be holding her back from being a happy, active, smart 7-year-old little girl.
For her mom Alison, though, getting to this point hasn’t been the easiest journey.
Ellery was born in China, and she spent the first five years living in the orphanage system that China maintains to care for children the government considers to have severe special needs.
Alison, a single parent, had wanted to adopt a young child from China, and she spent several months looking at the profiles of different children with special needs.
“It was a little scary initially,” Alison said. “I passed her by the first few times. You don’t necessarily know the extent of their situation. It could be a heart condition. It could be blindness. I knew very little about her condition.”
She finally learned that Ellery had been diagnosed with arthrogryposis, a rare condition that developed in utero. The condition causes contractures, where one or more joints become permanently fixed in a bent or straightened position, and muscle weakness. Alison knew Ellery had some surgeries in China but not much else about her care.
She adopted Ellery in November 2019. First, she had to help Ellery adjust to her new situation. Five years old, living in a new country with a new language and a new family — it was overwhelming.
“She was very timid and very frightened the first few weeks,” Alison said. “I could literally not be out of her sight at all. She came to work with me, even meetings with clients, and she would just sit there and pretend to take notes, like I did. Or she would make pretend phone calls. She likes to do whatever Mama does.”
Then Alison went to work finding the medical care Ellery needed, starting with surgeries at Nemours Children’s Hospital in Wilmington, Del. In the summer of 2020, doctors operated on her right elbow, wrist and thumb, with the goal of giving her more flexibility in the affected joints and improving her fine motor skills so she would better able to do daily tasks like feeding herself.
They started coming to Schreiber for services about a year ago. Ellery receives occupational therapy with Amy Mostellar and physical therapy with Christen DeSarro.
“In OT, it’s really a struggle to figure out ways to help her care for herself,” Alison said. “She has fingers, but they don’t move a whole lot. She’s learned to adapt. She can do a lot with her toes: She can color, and she can almost tie her shoes. She loves to swim.
“Just the fact that she sees she can do these things gives her so much confidence. … She just runs with it. She beams.”
Ellery’s newfound confidence shows up in little ways. Like when she smiles and laughs and squeals, “Push me higher,” on the swing in OT.
When she first started at Schreiber, she had trouble grasping her hands together to hold on while she swung. Now? No problem. Those little fingers are stronger.
Or the way she can maintain her balance in PT.
“When she started, she fell all the time,” Alison said. “I worried about her. I thought I might have to get her a helmet, because when she falls, she can’t really catch herself with her arms. Now, she rarely falls. Her balance is so much better. She can walk up the steps now by herself.”
“I’m still close by though,” she added, with a smile.
She described the progress as slow and steady.
“You almost don’t realize it’s happening. But then you see her on the swing and you think: ‘She couldn’t do that before.'”
The shy, quiet 5-year-old has given way to a confident, bubbly 7-year-old, a foodie (she loves anything spicy) who enjoys sewing (with her feet!) and play dates with friends.
And her experience at Schreiber has played an important part of that evolution.
“(Schreiber) is a wonderful place, and we’re so thankful this is here. This is a joyful place, and Ellery fits right in.”
For Carter Peiffer, an occupational therapy session with Sarah Terry will usually involve food. And making a mess with food.
The mess is by design. A puddle of PediaSure on the table is fair game for Carter to write his name in, drive a toy car through or give a sip to Elmo. He might pull a straw from a cup filled with the nutrition drink and sniff (good) or take a tiny taste (better) from the end of the straw.
It’s all about making food fun for Carter, giving him positive experiences. He and food have had a rough two years. Through a series of life events, Carter went from a happy, active 2 year-old who would eat lots of different foods to a 4 year-old who would only eat strawberry banana yogurt — and it had to be Gerber’s. The lack of variety and nutrition in his diet over time left him with a severe vitamin C deficiency and a case of what used to be called scurvy. That caused his bones and muscles to weaken, to the point where his bones became brittle and he couldn’t walk or even stand without help.
Let’s go back to the beginning. When he was 2, his mother Desiree said she noticed Carter was a little delayed in speech. But he was otherwise active and healthy. Then he gradually began to cut out some foods, starting when Carter’s brother was born. Around the same time, his grandmother was in the hospital for an extended period following heart surgery.
These new stresses in his life caused him to become even more picky with his eating, to the point where all he would eat was the yogurt.
In March a year ago, Carter was running around playing when he tripped and fell. He ended up breaking the growth plate in his left knee, which required a knee immobilizer. A month later, he fell again — still wearing the immobilizer on his right knee — and broke the growth plate in his other knee.
After another round of medical visits, doctors at Children’s Hospital of Philadelphia in May found multiple tiny fractures in his bones and sent him to CHOP’s emergency department for an immediate, intensive examination.
Their conclusion: Carter’s increasingly limited diet for more than a year had caused a dangerous vitamin C deficiency that had weakened his bones and left him susceptible to fractures. His overall medical state was as fragile as his little brittle bones.
He spent nine days at CHOP in May receiving treatment and starting inpatient therapy. Later that month, after he was sent home, Desiree called Jen Bachman, our social services director, to arrange starting services at Schreiber.
In early June, Carter had his first physical therapy visit. After not being able to put any weight on his legs because of his knee injuries, step one in his recovery was relearning how to walk. He did aquatic therapy in our therapy pool with Megan Campbell Roland, and PT in the gym with Laurie Panther.
Desiree said Laurie noticed some sensory issues and suggested Carter be evaluated for occupational therapy. In September, doctors diagnosed him with autism and sensory processing disorder, and he started working with Sarah for OT. The work there has focused on helping him expand the variety of foods he ate.
“Carter, what did you eat today?”
Sarah asked the question at the start of a recent therapy session.
“Some peanut butter bread, and I ate some hot dog!”
“You did not,” Mom said. She smiled and gave him a what-are-you-talking-about look. “You had some yogurt.”
“Yogurt,” Carter repeated back, and then swirled some PediaSure around the table with his fingers.
Sarah had a dry erase board next to her with Carter’s eating goals for the session written in blue marker. When Carter accomplished one of his tasks for the session, Sarah had him fill in the box next to that task on the white board.
The work with Sarah on eating is paying off. Desiree said Carter weighed 29 pounds when he arrived at CHOP a year ago and 32 pounds when he left. Today, his weight consistently ranges between 42 and 45 pounds.
“Sarah got him to eat peanut butter and marshmallow (sandwiches),” she said. “He started eating chips. He tried an animal cracker and a pretzel. He seems to like the crunchy stuff.”
It’s a constant process, sometimes painfully slow, sometimes with setbacks.
“When he gets derailed, when he gets sick, he shuts down (and stops eating),” she said. “I’ve had to stay up all night with him to give him water, because getting dehydrated would mean we’d have to go to the ER.”
The progress is obvious, and not just with his eating.
“He’s able to walk and run and is almost back to where he was before all this started,” Desiree said. “He plays on the playground. He goes up and down steps. He’s able to express himself more now.”
Later, she talked with a lot of emotion about what she has seen bringing him to every appointment for the past nine months.
“To see his progress has been amazing. I know (coming to Schreiber) will all end at some point, but everybody has been so amazing. They are like family here, and Carter loves being here.”
After taking two tentative tastes of a strawberry nutrition drink, Carter finishes the session with a reward: a bite of his peanut butter sandwich.
The complications for Colton Kiss started the moment he was born. His mom, Tara Kiss, said doctors used vacuum extraction to help with delivery.
The procedure “caused four intracranial brain hemorrhages,” Tara wrote in an email, “as well as a blood clot on his cerebellum, which is the part of the brain that controls movement, balance and speech.”
Colton was quickly transferred from Lancaster to Children’s Hospital of Philadelphia, widely known as CHOP, where he spent the next two weeks in the neonatal intensive care unit (NICU). Tara, living in York at the time, stayed with her mother, Cathy Kiss. Cathy lives in Manor Township, and Tara drove back and forth to Philadelphia every day for those two weeks to be with Colton.
When Colton was 4 months old, a follow-up MRI showed the blood clot and hemorrhages were gone, but the clot left behind an area of damage on the cerebellum.
“We learned from his neurologist that we were looking at a long road of obstacles as that part of the brain is so important to everyday life — walking, talking, motor skills…,” Tara wrote.
CHOP referred them to Early Intervention and outpatient pediatric therapy. After doing some research and talking with friends, Tara knew she wanted to start services with Schreiber. Cathy’s best friend’s father, Joe Finger, had volunteered here with a group of other residents from St. Anne’s Retirement Community. Cathy also knew Michele DeBord, sister of Schreiber President James DeBord.
“Hearing about (Joe’s) experience and knowing Michele was so passionate about Schreiber, we were really comfortable (starting at Schreiber),” Cathy said.
Colton was born in March of 2020. Tara moved to Lancaster in December of that year to start services at Schreiber.
“We were immediately welcome by the Schreiber staff who are now pretty much our family,” Tara wrote. “Lisa (Moore, at the front desk) took us in under her wing and connected me to Jen Bachman to get Colton evaluated and started right away. We have been working with Miss Christen (DeSarro) for PT, Miss Kim (Martin) for OT and Miss Cassie (Glick) for speech. When we started, Colton was unable to sit unassisted, unable to feed himself solid food, unable to say any words at all.”
That was where Colton was in early 2021. Today? He still receives all three therapies, and he’s enrolled in Schreiber’s Circle of Friends Academy child care program, in the Toddler Room.
“It has not even been a year yet,” Tara wrote, “and he is now able to sit, stand alone and take his own steps on flat surfaces. He can feed himself any type of food he desires. He is working on his words and attempting new words almost daily. We are only in the beginning of this journey, but because of the dedication from our Schreiber family, Colton has a chance to live his life as normal as possible.”
Which is why Cathy reached out just about a year ago at this time offering to help with our first Cup O’ Cards fundraiser. The idea for Cup O’ Cards was simple: We bought a bunch of gift cards from local businesses, stuffed them into some sponsored coffee cups, then raffled off the cups.
“I heard about it from Michele, I looked at your website, and I decided to jump right in” by donating a card-filled coffee cup, she said.
Cathy, who runs her own home-based accounting business, CLK Accounting and Payroll Inc., reached out to a number of clients and asked them to donate money to buy gift cards or to donate cards from their business. We quickly added her CLK Accounting mug to the other cups, and it turned out to be popular with raffle ticket buyers.
She was happy to participate in the second Cup O’ Cards raffle, which starts March 28, and she plans to do two cups this year, including a Mystery Cup filled with a collection of surprise gift cards.
“I’ve already raised more than $600 in cash, which I’ll use to buy the gift cards,” Cathy said, “and collected two donated items for the Mystery Cup.”
Last year, with Cathy’s help, Cup O’ Cards raised about $27,000. This year, with her help again, we hope to raise even more. And that would be make a proud grandmother pretty happy.
“That’s my boy,” she said. “And I see what Schreiber does for kids with my own eyes. (Colton) didn’t sit up until he was maybe 10 or 11 months old. He’s very delayed. To see his progress with the therapists is what I love about Schreiber.”
Tara said it this way in her email:
“… Whether children are born healthy or born with already known obstacles, every child deserves a chance to be helped, and Schreiber gives every child a fair chance at a normal life. That is something I will always support. We are forever grateful for Schreiber and the care my son receives. From his teachers at Circle of Friends Academy down to all of his therapists, thank you all for loving my son!”
Amanda Katchur is a psychologist who has been an advocate for services that support children for a number of years. Now, she’s learning to advocate for her own child, and that’s a completely different experience.
It’s one thing to know professionally the impact that Schreiber’s services and Lancaster County’s Early Intervention program have on families. It’s another thing to see it personally.
Her daughter Bethany was diagnosed as an infant with torticollis, a condition in infants that causes a baby’s head to tilt constantly to one side. Thanks to the work of Schreiber therapists, Bethany’s torticollis is gone and she runs, jumps and dances just like any 6-year-old little girl, Amanda said.
Bethany’s little brother Leo, 3 years old, has an autism diagnosis, was born with mild hearing loss and also had some torticollis as an infant. The three issues combined have left him behind in several areas of development. When it was time for Leo to receive services through Early Intervention, at 6 months old, Amanda had no hesitation.
“I knew we wanted to come back (to Schreiber) because we had such a positive experience with Bethany,” Amanda said.
Leo has been in good hands his therapy services started. Catherine Donahue was his Schreiber’s Early Intervention specialist for home visits. Dorlas Riley was his speech-language pathologist. Denisha Roberts worked with him in physical therapy. And Bernie Hershey has been his occupational therapist.
“They were all really great,” Amanda said. “I like to think that we’ve been fortunate to have, like, the dream team to be quite honest with you, with all the experience they have with his issues.”
COVID has, at times, made the therapy more challenging, like when the family had to switch to telehealth services for a time. At those moments, she could see the lengths the Schreiber team would go to for a child.
When telehealth sessions switched back to in-person visits, the change and the lack of consistency caused some challenges for Leo, as it does for many kids on the autism spectrum.
“Bernie showed up at one point at our house in costume as Jessie from “Toy Story” to try to re-engage after telehealth with Leo a little bit,” Amanda said. “They just really always made an attempt (to find what) he was interested in and get into his world, which I appreciated so much.”
During a recent therapy session at Schreiber, Leo worked with Marli Hess, an intern in Occupational Therapy, and Maddy Sova, a speech-language pathologist. They were trying to help him become more comfortable with a different kind of food – in this case, a chicken nugget – and to improve his language skills by using a smart tablet to respond to questions.
“We are working on communication in whatever way Leo feels most comfortable,” Amanda said. “Today, you saw him working on some eating, because eating has been a struggle for us, too. So he’s been working on increasing his tolerance for different foods and different textures and things like that. But communication has been, I would say, the biggest one.”
Mom was impressed with the way Leo greeted a visitor to the session, smiling and waving. “He probably wouldn’t have done that six months ago,” she said.
EI services do make a difference
Mandy Kolb Lyons is a coordinator in Lancaster County’s Early Intervention services program. She sent this email to agencies that provide Early Intervention services after a recent presentation to the agencies by Amanda Katchur. Amanda presented at the PA Statewide Interagency Coordinating Council (SICC) meeting to share her family’s story and how Early Intervention supported them.
Here’s an excerpt from Mandy’s email:
“Amanda shared numerous examples of how you helped to coach, support, empower and guide her and her family. Amanda beamed as she shared the journey that her son and family had with Early Intervention and mentioned a few times how Early Intervention supported her entire family, including Leo’s big sister! Not only did Leo grow and progress throughout services, his entire family did. We can only hope that every family that participates in Early Intervention can walk away feeling similarly to how Amanda and her family did after participating in our services.”
Zoey and some of her preschool friends play in a sandbox in a photo from 2019. Zoey has learned many different skills at Schreiber as she and her family deal with her diagnosis of Rett Syndrome, a rare genetic disorder.
Deanna Adair has been a Schreiber physical therapist for five years. Her daughter Zoey attended Schreiber’s S.T.A.R.S. preschool and Circle of Friends Academy and is now in kindergarten. Zoey also receives therapy services. She has Rett Syndrome, a rare neurological disorder affecting mostly girls. Individuals with Rett appear to develop normally until 6-18 months of age, after which they go through a regression and lose acquired skills. Zoey was diagnosed at 21 months of age. She began to display gross motor and language delays by 9-10 months of age, and began to lose her fine motor skills around 18 months.
Zoey, who will turn 7 in July, is unable to walk independently or talk, and has lost the ability to use her hands functionally or chew food. She communicates using an Eyegaze device and a yes/no board. She eats pureed foods and drinks thickened liquids, and has a feeding tube for supplemental hydration.
She also has scoliosis and obstructive sleep apnea, for which she uses a BIPAP machine. Rett Syndrome is not a degenerative disorder (brain cells are intact), and has been shown to be reversible in a lab setting, indicating that it may be curable in humans.
Deanna recently wrote a Facebook post to mark the fifth anniversary of Zoey’s diagnosis. She agreed to share it here.
I can’t believe it’s been five years since we received Zoey’s Rett Syndrome diagnosis. It was Friday the 13th. I was on my way from my old job to pick her up from day care at Schreiber and answered the phone call as I was getting on the highway. I thought they were going to tell me that further testing was needed, because they only agreed to test for Rett “for peace of mind,” since I asked, but that’s not how it went. They gave us an appointment at the CHOP Rett clinic three days later and told me not to look it up on the internet. Guess what I spent the entire weekend doing?! After two days on the couch, I had to pick myself up and do what needed to be done for our girl. After all, she was the same sweet, beautiful little girl she had been before the diagnosis.
We have learned a lot since that day, and we are determined to give her the best life possible and find ways for her to learn and experience as much as she can. She is such a sweetheart, has a sense of humor, is smart, works hard, and is just a happy girl. Life has not been easy, and we have our tough times, but she is worth it!
Lately, we have been working on things like a special needs trust for her future, which can be overwhelming to think about, and the older she gets without there being a treatment or cure, the harder it is, too. But our girl has had an amazing year in kindergarten, having fun and learning to read and write using eye gaze, and we are so proud of her!
This week marks the 50th anniversary of the Apollo 11 moon landing. And Schreiber’s Occupational Therapy Department is using the occasion to add some moon fun to therapy sessions.
Eli Cole climbed to the top of a lunar hill (actually a huge pillow) and jumped into a small lunar lake (actually a big ball pit).
Wyatt Dennison turned a piece of paper into a rocket, slipped it over a plastic straw then had it blast off with a puff of air from his mouth.
Schreiber OT Bernie Hershey was the mission control commander who made all this lunar fun happen. Bernie likes to use current events to add a little spice to her therapy sessions.
Wyatt, 6, comes to Schreiber for OT and speech-language therapies. His mom Liz says Wyatt is on the autism spectrum, and he’s been coming to Schreiber for more than three years for help with his fine and gross motor skills and to work on sensory issues.
Wyatt Dennison and Schreiber OT Bernie Hershey launch their straw rockets at the same time to end Wyatt’s therapy session.
For the lunar crafts, Wyatt has to use fine motor skills to cut out the piece of paper that will become the body of the rocket, then cut out the fins. He then has to wrap the rocket around a pencil to form it, tape the fins to the body, then slip it off the pencil and onto the straw.
“The kids don’t really know much about the moon landing, so we’re incorporating our therapy goals into activities with a NASA or a moon-landing theme,” Bernie said. “NASA’s website had lots of ideas we were able to use.”
NASA’s Jet Propulsion Laboratory actually posted the instructions for the straw rocket on its website.
Eli works on his balance and core strength when he’s climbing the lunar hill. He also practiced his handwriting by pressing gently on “zero gravity” paper (paper on a soft surface that would allow for easy punctures).
Eli Cole jumps into a ‘lunar lake’ during a recent occupational therapy session. The exercise added an element of space fun to therapy.
Both boys also used a small hammer to smash “moon rocks” during therapy, another exercise that worked on hand-eye coordination, and walked in moon boots, that helps them practice balance and coordination.
“With everything that our families have to deal with on a daily basis, adding variety with a special theme improves motivation on even the most difficult task, like the handwriting practice,” Bernie said.
There is a little bit of the Apollo spirit in all of this, the creativity and the experimenting and the striving to be a little bit better.
And that’s a good thing. For Schreiber and for the kids.