Disabilities
Sam Leon-Durkee: Young man with a plan
April 19, 2022
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 learns to soar at Schreiber
March 29, 2022
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.”
Alison paused.
“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 the Kiss family, dedication mixed with gratitude
March 4, 2022
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.
“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.”
Tara Kiss, Colton’s mother
“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!”
Schreiber mom: From advocate for others to advocate for son
December 17, 2021
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.
I like to think that we’ve been fortunate to have, like, the dream team…, with all the experience they have with his issues.
AMANDA KATCHUR
“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.”
Deanna and Zoey learn to live with Rett
May 20, 2021
Zoey Adair
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!
Schreiber volunteer all about the Duckies
July 24, 2019
Melissa’s connection to Schreiber goes back to the beginning of the Lititz Chocolate Walk.
Chocolate Walk started in 2001 as a project of the Kiwanis Club of the Lititz Area. Melissa was a member then (and still is today). One of the Lititz club’s founders was Ralph Sherrif, who also happened to be a Schreiber board member.
“When we did the first one, we were talking about where the money we raised was going to go,” Melissa said. “It was because of Ralph that we decided Schreiber would be one of the places we supported.”
Her connection to Schreiber grew through her work as a math teacher at Manheim Township High School. She was also a Key Club advisor, making students aware of community service opportunities.
“I would always mention Schreiber,” she said. “I’d tell them: ‘They are helping kids that really need help.'”
She retired from teaching in 2009, and initially she spent many days caring for her ailing father. After he passed in 2013, she had more time for volunteering. Her thoughts turned to Schreiber.
“I came in to drop something off for Chocolate Walk, and I took a little tour,” said. “I saw one of those classrooms… I knew I wanted to be more involved.”
That same year, she signed up to sell tickets for the Rubber Duckie Race. Dozens of people sell tickets for us every year. These Duck Patrol sales people are a critical part of our selling. Melissa takes it to another level.
She will sell Duckies to friends and neighbors. She will sell them at Kiwanis meetings and some of the other volunteer groups she’s involved with. She takes them to church. Last year, her minister was reluctant to buy one. Melissa wouldn’t take no for an answer. He ended up with the Noah Duck — as in Noah’s Ark — that was part of our Animal Kingdom theme.
She has the no-nonsense air of a teacher, but she’s all heart when it comes to Schreiber. She signs out hundreds of ducks each year to sell, and she rarely brings any back unsold.
“I love talking to people about what you do here,” she says. “Who can say no to spending $5 to help kids? And the ducks are just a fun way to do it.”
Want to join the fun?
Selling Duckies for Schreiber is fun — and easy. Just download one of the Sales Patrol applications, fill it out and bring it in, and you can sign out some Duckies to sell. Take 10 or take 100; any number helps and is appreciated. And you will be making a difference for all the children of Schreiber.
Schreiber’s reach stretches around the world
April 3, 2019When Denisha Kline had the chance to work with kids at orphanages in Vietnam, it didn’t take her long to say yes. Denisha is a physical therapist at Schreiber and a board member at Brittany’s Hope, a nonprofit based in Elizabethtown that provides support for children in orphanages in Vietnam and Africa. Brittany’s Hope is coordinating the trip.
She had been on a similar trip to Africa a few years ago and was eager to do another one.
She’s leaving May 19 and will be gone for 17 days. They will visit several different orphanages, working with staff and teachers on best practices for caring for children, including those with special needs.
She will be joined by two occupational therapy professors and a handful of social work and occupational therapy students, all from Elizabethtown College.
“We’ll have a chance to train staff and problem solve and do therapy with kids,” Denisha said. “Most orphanages lack to the staff to provide (an adequate) level of care, and they don’t have the equipment or the building space. We’ll do what we can to help them.”
Another thing Denisha is hoping to do is to take along some supplies to leave with the orphanages, the kids and their families. She’s asking for donated items, particularly adaptive feeding tools like spoons, bowls and cups.
“If we have Schreiber parents whose kids are older and don’t need some of these smaller items, this is a real opportunity to pass them on to families that have a need,” Denisha said. “It might help a child over there learn a skill that will help them be more independent.”
MAKE A DONATION
Do you have adaptive feeding tools that you aren’t using anymore?
Bring them to Schreiber between now and April 26. Denisha Kline would like to deliver the items to the orphanages and families in Vietnam she visits during her trip with Brittany’s Hope.
Contact Denisha at 717-393-0425 ext. 153 or by email at dkline@schreiberpediatric.org to learn more or make arrangements to donate.
Changes bring start of new era
October 25, 2018Some of you probably already know that what we call Schreiber today has been around since 1936. In those 82 years, we have gone by several different names: The Society for Crippled Children and Adults, the National Easter Seals Society and, starting in 1994, Schreiber Pediatric Rehab Center of Lancaster County.
Now, we are excited to tell you about our new name and introduce our new logo.
In the nearly 25 years since we adopted our most recent name, Schreiber has experienced many changes and a lot of growth. We see more children than ever. We see kids with a wider array of diagnoses. We did a major expansion in 2006, and we have added new services, including aquatic therapy, thanks to our new pool, and the Circle of Friends Academy daycare center, which now accepts children as young as 6 weeks.
The staff and the board leadership of the center began to think that our name didn’t reflect the breadth of services we provide. While we still see many kids that you might expect to see at Schreiber, kids born with cerebral palsy or spina bifida, we also see lots of other kids whose challenges aren’t nearly as complex. They might have a minor speech delay or need a little help with their fine motor skills.
We also have a fair number of typically developing kids. They attend our S.T.A.R.S. Preschool or Circle of Friends. Or they come for swim lessons. Or they attend with their parents to learn baby signing or infant massage or kids’ yoga.
As our new mission statement reads: “We provide everything needed for all of life’s challenges, so that families and children can reach their dreams and vision. We see every child’s unique capabilities and help them achieve their fullest potential.”
The new mission statement guided the conversations about finding a new name. After numerous meetings during the strategic planning process of 2017, a stakeholder survey and a final review by the board, we will now be officially known as the Schreiber Center for Pediatric Development.
We didn’t want our brand to send the message that we are fixing “broken” kids. We are helping any family seeking services so that their son or daughter can be their best selves.
And we felt it was important to emphasize our new name with a new logo, one that keeps the name Schreiber at the center of our identity.
So take in our new name: The Schreiber Center for Pediatric Development. Check out our new logo. And know that we will keep doing what we’ve tried to do for 82 years: Enriching lives. Giving hope. For all who need us, every day.
Support Schreiber for the Extra Give
We have a new name and a new logo, but we still rely on the generosity of the community to operate.
Please consider a gift to Schreiber during the Extraordinary Give on Nov. 16. Go to www.extragive.org anytime on Nov. 16, find Schreiber’s listing and donate. It’s that easy. And every dollar supports the children of Schreiber.
Schreiber campers ease into the end of summer
August 8, 2018The teens from the Club 625 Camp gathered this week for one of their last outings of the summer, a visit to Sky Zone. Before they did that, they had an important job to take care of.
Every year, the campers do some kind of community service project. This year, as in the past few years, they collected non-perishable food items to help stock the food pantry at Grace Lutheran Church in Lancaster.
Every Wednesday, Grace Lutheran servces about 150 dinners to those in need of a free home-cooked meal. The Schreiber kids and their parents brought in numerous bags of pasta, spaghetti sauce, canned bake beans, salad dressings and more.
The kids have a week of fun activities and they help out some neighbors that are less fortunate. Nice work by Jay Graver and Carla Yando, who organize the camp, and by all the families who participated this year.
Speaking of Jay and Carla: After all of our camps end this month, they will be getting ready to welcome another group of S.T.A.R.S. preschoolers back to the classroom. And, once again, we would like to invite any Schreiber supporter who is also a customer of Giant Food Stores to participate in Giant’s A+ School Rewards Program. The program lets you earn cash for the schools you designate just by using your Giant BonusCard. If you have supported Schreiber in the past, you don’t need to re-register your card.
If you’re a new supporter or you want to make a change to your account:
Go to www.giantfoodstores.com.
Sign in to log into your Giant account, or register a new account.
Once you signed in, click on Manage My Account.
Click on the Rewards & Savings tab.
Click on the Change Schools button in the A+ School Rewards area, then select Schreiber S.T.A.R.S. from the list of schools.
Earn points and money for Schreiber from when the program runs, from Sept. 7 through March 16.
Register your card for Schreiber today!
Meet the Grassos, a second generation Schreiber family
July 11, 2018Starting services at Schreiber for two of her children did not create anxiety for Andrea Grasso. She had seen what Schreiber did for two of her sisters.
Andrea’s sister Ashley was born with Prader-Willi Syndrome, a rare genetic condition that creates a host of physical and developmental challenges.
“We came to Schreiber almost every day of the week for her preschool and her therapy services,” Andrea said. “It was just something I grew up with. (Schreiber is) something that’s been part of my family since she was born.”
Then her parents adopted Ariel, a little girl who had Down Syndrome. And the visits to Schreiber continued.
Fast forward a few years. Andrea met and married Nick Grasso. Nick was an only child, but that didn’t make it harder to blend in with his new family. It might have made it easier.
“Both of my sisters just love Nick,” Andrea said. “They just gravitated toward him, and he would embrace them with open arms.”
When it was time for Andrea and Nick to start a family, they were both open to children with special needs. For Andrea, it was a natural continuation of the relationships she built with her sisters as a child. For Nick, he saw they had the experiences and the resources that few adopting parents could offer.
So they adopted Mia and Giuliana, and Giuliana has Do
wn Syndrome, just like Andrea’s sister Ariel. And they have two biological sons, Paxton and Jude.
Of the four, it was Paxton’s start in life that proved to be the scariest. They had taken him home from the hospital, but at 10 days something appeared to be wrong. He was crying and fussy and not wanting to eat. At the pediatrician’s office, the doctor saw Paxton have a seizure and sent them right to Lancaster General Hospital.
The medical team there came back with the kind of news that would be any new parent’s worst nightmare.
“The doctor came in and said, ‘He has a Level 3 brain hemorrhage. We need to get him to Hershey. LifeLine will be here in 7 minutes. And you need to get to Hershey as soon as you can.'”
Andrea remembers little of what happened on the trip to Penn State’s Milton S. Hershey Medical Center.
“I know it was a whirlwind of doctors. And I remember pleading, ‘Can I please go with him? Can I please go with him?’ And they said no. And from that point on it was just a blur. We got to Hershey, and he had already been there for 15 or 20 minutes. They had him settled in a room. And he had tubes, and he was just very sick. It was terrifying. As a new mom, you have two young children at home already, and then you have this new baby, and he’s sick and you don’t know why. And you don’t know what caused it. You don’t know what happened. It’s just absolutely terrifying.”
Paxton’s stay in the hospital lasted a month and a half. While he was there, doctors placed a shunt in his brain that connects to a small tube that runs down into his abdomen. The shunt keeps any fluid from building up in his brain again.
He’s a healthy, happy little guy now. But that early bit of brain trauma left him with some sensory issues, which, in turn, create some behavior issues. He attends Schreiber’s S.T.A.R.S. Preschool and has received occupational therapy for a little more than a year.
“He was a different kid when he (first) came in,” Andrea said. “He was shy and very cautious and anxious and nervous. The progress we’ve seen, even over the last six months, is incredible. He is now so much more calm and so much more relaxed. He’s learning how to regulate himself and how to regulate his emotions. He’s learning how to deal with different sensory issues. He’s learning those coping skills.”
The progress with Giuliana has been equally remarkable.
“When we first fostered her, she was a little less than a year old,” Andrea said. “At that point, she couldn’t hold her head up, she couldn’t roll over. She couldn’t do anything. She was already delayed because of the Down Syndrome, but she was also very much delayed because of neglect.”
And now, after five years of therapy first through Lancaster County Early Intervention and then at Schreiber, she can do so much more.
“She came (to Schreiber) being not being able to say two words together,” Andrea said. “Now, she’s able to say, ‘I want this,’ or ‘I need that.’ She can say sentences. That’s huge.”
Andrea knows more than most what a difference Schreiber can make in a child’s life. She saw it with her sisters. She’s seeing it now with her son and daughter. For many families, this is one of the few places, maybe even the last place, where they can have hope. Hope that a son will live a full life free of anxiety, or a daughter will learn to talk.
“Families with children with disabilities, they hang onto (Schreiber),” she said. “People from the outside need to see what happens here. They need to see how remarkable this place is and the incredible things that come out of here.”