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!
The Central Penn Business Journal recently named more than 30 leaders and organizations as finalists in their 2020 Healthcare Heroes awards, and Schreiber Physical Therapist Denisha Roberts was recognized in the category Therapeutic Care Hero. Here is a testimonial letter from Schreiber parent Jackie Randazzo, whose daughter Grace has been in Denisha’s care since Grace was 2.
Our daughter, Grace, was born in Korea with cerebral palsy. Grace came home to us in 2004 when she was 11 months old. We knew we were adopting a “waiting child,” but we really did not know much about cerebral palsy and what Grace’s disability would mean for her or for us as a family. We received a referral to Schreiber Pediatric and began our journey with Early Intervention and Schreiber. Grace had a few therapists early on and when she was a toddler, then we met Denisha Roberts. We immediately made a connection with Denisha, and she became a strong source of support and a wealth of knowledge.
At first, Denisha came to our home for physical therapy, helping us learn how to adapt our home and support Grace within the home environment. We worked with her to learn what Grace needed to grow to her full potential. Denisha taught us, and helped me personally remember to stand back and let Grace do things for herself. She has helped me learn to empower my child and was not afraid to have the difficult conversations needed to help me do “my work” so Grace could do her work. Denisha always had a way of keeping me hopeful and accountable for our family and for our child.
I have learned so much from Denisha over the years, and we have become a team that is constantly learning to unravel the mystery of Grace and what she needs and, most importantly, how to motivate her.
Denisha was always willing to go above and beyond.
When Grace started horseback riding lessons Denisha was happy to come to the barn to help us learn how to help Grace with riding. On another occasion, Denisha took us to a ball pit so Grace could practice falling and building her protective responses. Over the years, she has gone to amusement parks with us to help Grace have a fun and safe experience. We visited countless playgrounds so Grace could learn to navigate with the other children.
Denisha Roberts is a kind and loving person who is totally dedicated to her work and to helping children. She is completely invested in the families in her care. Denisha is a mother of four, a board member of Brittany’s Hope and a host family for foreign exchange students. I remember a time that Marietta had experienced some flooding, and Denisha called to see if we or any neighbors needed help moving furniture upstairs. She and her four children came to help neighbors. That is just the kind of person she is.
Denisha has become more than a physical therapist to Grace. She has become a part of the family and a trusted friend. When you have a child with special needs it can at times feel lonely and overwhelming. I always knew I had Denisha to help us, and that support has been priceless. She has truly been priceless lifeline and friend for us after all these years. Grace is now 16, and we have known Denisha for more than of 14 years.
We feel truly blessed to know Denisha Roberts.
Jackie Randazzo and her husband Martin live in Marietta.
Four-year-old Jack Teyssier works through a series of exercises each week at Schreiber. His physical therapy sessions include strengthening and stretching for his lower left leg, some core work and some myofascial release by Schreiber therapist Lisa Stachler-Volk.
Jack Teyssier, 4, finishes his physical therapy session with Schreiber PT Lisa Stachler-Volk.
It’s hard to tell what exactly Jack is dealing with until Lisa puts some kind of black brace-like device on Jack’s left ankle.
Jack has one of the rare disorders therapists at Schreiber see from time to time. In this case, he has myofibromatosis, a condition that causes benign tumors to grow anywhere in the body.
According to the National Organization for Rare Disorders, most cases occur in young children and there can be a familial link. Jack’s mother Kara Teyssier said she had them on her leg and back; they were surgically removed when she was a baby. Her youngest son, Levi, also had one inside his cheek that was treated through chemotherapy and surgery.
It hasn’t been so simple with Jack.
“He has quite the medical history,” Kara said.
While Jack did his exercises with Lisa, Kara went through the list of Jack’s issues.
When he was born, he was diagnosed with pyloric atresia, an obstruction in the part of the stomach that leads to the small intestine. Doctors at Children’s Hospital of Philadelphia repaired that through surgery, and they also found the first his benign tumors.
At one month, Kara said she and her husband, Ben, noticed Jack’s left foot was droopy. Another of these tumors had developed and was pressing on a nerve in his leg.
So Jack went through a course of chemotherapy, and Kara said most of the tumors have shrunk or disappeared. But the one in his leg had caused permanent damage to the nerve. and Jack had lost the ability to flex his foot normally.
From the time Jack was 7 or 8 months old, Schreiber therapists began working with him at home. That lasted about a year and a half, until the Teyssiers decided he was doing well enough with a brace on his left leg.
Over time, though, his doctors wanted to try and restore more flexibility in his foot. They recommended another surgery, this time to take a tendon from the bottom of his droopy left foot and move it to the top of the same foot.
That surgery happened in March 2019, and he started coming to Schreiber for physical therapy in April.
Lisa has worked on helping him walk better. Before the surgery, the brace kept his foot in a neutral position to help him walk. But he couldn’t flex his foot at all.
“The surgery helped,” Lisa said. “He couldn’t lift his foot at all when we started. Now, he can keep his foot in a neutral (not drooping) position without the brace.”
She has been working on improving the strength of his left leg; his foot tended to roll and he would walk on the side of his foot. He’s also better able to flex his foot up and down. How far he will eventually progress isn’t known.
He can run around and play just like any other 4 year old. He rides a bike without training wheels. When he walks, you can’t even tell he has any kind of a problem, Kara said.
“We have been pleased with his progress,” Kara said. “At home, he doesn’t even wear the brace a lot of the time. Long term, we don’t know if he’ll have to keep the brace. Time will tell what happens as he continues to grow and get stronger. We’re blown away with how far he’s come.”
In May, Denisha Roberts took her second mission trip overseas with Brittany’s Hope, a Lancaster County nonprofit that serves families and orphaned children, primarily in Vietnam and Africa. During her travels on this trip, Denisha worked with a 12-year-old boy named Quan. As we do in our therapy work here at Schreiber, Denisha’s visit changed Quan’s life. We talked recently about her trip. The interview has been edited for space and clarity.
Denisha Kline, left, with Quan, one of the many children she worked with during her trip to Vietnam in May.
Dan Fink: We talked earlier when you were getting ready to leave on this mission trip. You’ve since gone. I just wanted to hear a little bit about how the trip went.
Denisha: The trip was amazing. We stopped at a couple different orphanages in Vietnam. We started in Ho Chi Minh City and traveled from there to two central locations in Vietnam and then to Hanoi in northern Vietnam.
At the one location, there were quite a few kids who had special needs. There was recently a capital campaign done through Brittany’s Hope to build an adaptive living quarters and get some therapy equipment for these kids. That was my favorite part of the trip because there were about six kids that had special needs, with significant motor special needs. We were able to educate the staff on how to use appropriate equipment for those kids. My favorite part of that piece of the trip was a young boy named Quan. He was about 12 years old. He was recently brought to the orphanage by his grandmother because she was no longer able to care for him. Prior to coming to the orphanage, he would spend his days when she would go to work lying on the floor in their small living area. He never had the ability to sit unless somebody was able to hold him.
I’m not sure where his parents were in this picture. His grandmother could no longer care for him and meet his needs, so she brought him to the orphanage hoping that he would receive some care there. We brought him to the adaptive living quarters, and through the help of a translator, we were able to talk to him. Sweet boy. Very quiet, soft spoken. Very serious young man. Had a lot of muscle contractures. Couldn’t sit up on his own, couldn’t really roll on his own.
Dan: Did he have a diagnosis?
Denisha: He was probably never seen medically. My pretty good best guess would be cerebral palsy. We asked him if he wanted to sit up; he said yes. He was very fearful about sitting, so we slowly brought him up into sitting on the mat table, and then we asked him if he wanted to sit in one of the adaptive wheelchairs that were donated. He said yes. So we transferred him to a wheelchair and really monitored him because he had not been sitting, just making sure that he was OK.
Dan: It can be unsettling for a kiddo who has been lying down most of his life to be in that upright position.
Denisha: Yes. Right. So once he was in the wheelchair, he had the biggest smile on his face. He was so excited to be sitting without somebody having to hold him. So I handed him a playground-sized ball and asked him if he could throw it to me. And he just looked down at his hands because his hands had never really been free to play because he had always been lying on the floor or being held. We helped him. He picked up his hands off the tray and held the ball and threw it. Then he realized he could do this. So he was playing ball a little bit with this big smile on his face. He got tired pretty quickly and went back to his room.
Later that evening, all the kids at the orphanage had a big celebration and did different skits that they had been practicing and songs and dances and games.
Dan: Just for you because you were visiting?
Denisha: Because we were visiting. We had a big buffet meal and a celebration with them. The children with special needs were not involved with this, for the most part. So I went into Quan’s room and asked if he wanted to come out and join the celebration. He said, yes, he did. We got the wheelchair, positioned him, went out. He had the best time. He was laughing, and talking with some of the other kids and the caregivers. He joined in, the kids would push his wheelchair around to the different locations. You could tell he was really enjoying himself. He got tired pretty quickly.
The caregivers took him back to his room after a few hours. I went in to check on him, and, with the help of one of the caregivers, who had a translation device on her cell phone, I was able to tell him I was really proud of him for trying new things. It can be a little scary to try new things, but his caregivers now know how to do some of the things we had done. And hopefully he will continue to work on sitting and using his hands more and doing some of the stretches we had given him to do. He smiled and said through the translator, today is the first day he was ever included in an activity. And it was the first time he was truly happy.
Quan was pretty articulate and very social and aware of what was going on around him and really craved the interaction with the other kids. And it was neat to be able to show the caregivers how it was so simple to include him in some of the activities.
Dan: Culturally and philosophically, the idea of including kids with special needs like Quan in group activities, they didn’t think about that?
Denisha: They didn’t think about it, plus they never had the means to be able to do it, unless you’re carrying some of these children.
Dan: So having a chair helps.
Denisha: Having a wheelchair makes a big difference. Otherwise, there would be no opportunity for him to be included. And for kids who are still living with families, there’s nobody who can stay home with them. There are no schools that have special equipment to accommodate the kids, or at least none that I’m aware of. It’s just much more difficult for these families. And medical care is hard for some of these families to afford.
Dan: Tell me a little bit more about some of the other things you did on the trip. You were there for how long?
Denisha: Almost three weeks. It was very hot, very humid. It was fun. We delivered some soccer equipment for some of the older children, mostly boys who enjoy playing soccer. We help the kids work in the gardens, plant coconut trees. We took two groups of children on field trips.
Dan: So these were not all special needs kids?
Denisha: No, not all special needs kids. We dedicated some houses to some families so that the mother could keep her children, because the mother didn’t have living arrangements for the children to stay. That was fun. We visited a large government-run orphanage and did some case studies with a physical therapist there and talked about some tips on working with children with autism, because they didn’t really have that bag of tricks or education to know how to help with those kids. At the large government-run orphanage, there were probably between 300-400 or more kids with pretty significant special needs. That was a little overwhelming, but you kind of just do what you can do to leave everything in a better position than when you got there.
Dan: What would you say you ended up taking away from the trip? Anything new that you learned?
Denisha: I learned a lot about the culture. It was just fun to work with the kids and give attention to some children who maybe don’t get a lot of attention because the caregivers are so busy with large groups of children. I think the best part was being able to share ideas and discuss therapy ideas with staff, and for them to be able to apply it for the children who were there. From that, we realized it was probably something we want to do frequently so I’m looking at getting some therapists to go back every year.
But the kids are amazing. They’re resilient. They’re willing to help each other out. They have amazing dreams. My sponsor daughter in Kenya wants to become an artist. My sponsor son wants to become either a lawyer or a police officer. These kids are going to college. And they are making these things happen.
We have a lot of therapy bikes at Schreiber. But there was a certain kind of bike we were missing: a hand bike, no pedaling, for school-age kids. Enter a group of senior mechanical engineering students from Penn State Harrisburg.
Bernie Hershey, a Schreiber occupational therapist, was the one who suggested the project to the group in September.
The students, all seniors — Nicole Linke, 21; Cody Mackanick, 23; Michael Ruch, 23; and Andrew Saienni, 23 — came to visit Schreiber after Nicole and Michael had interned over the summer with Arconic, a Lancaster County manufacturer. Arconic has supported Schreiber for several years by donating and sending volunteers. Nicole and Michael joined a group of Arconic employees for a service day at Schreiber that included a tour by Susan Fisher, Schreiber’s volunteer coordinator.
“We have one hand bike, and it’s too small for some of the kids that need it,” Bernie said. “Susan brought them to me, and they said they were looking for a capstone project for their senior year.”
The tour sparked their engineer brains immediately.
“When I saw this old therapy bike they had, I was intrigued,” Nicole said. “I thought that looked like something we could work on.”
The idea they developed with Bernie was to build a bike for kids ages 6-12 that would require the kids to pedal using only their hands. (Watch Zoey Zweizig do a demonstration ride in the video below.)
“We’re always looking for ways to have upper body resistance,” Bernie said. “One of the best ways to build upper body strength is to have them propel themselves through space.”
That movement triggers the release of endorphins in the brain that are pleasing and calming at the same time. Bernie saw that immediately when Owen Hull climbed on the bike. Owen is 5, and he receives occupational, physical and speech-language therapy at Schreiber. He’s on the autism spectrum, said his mom Monica Hull.
“If you noticed, the more he rode the more he talked to the college students,” Bernie said. “He engaged with those kids, which he normally doesn’t do. He was mechanically inspecting the bike and asking questions about it. Oh, I got such a charge out of it.”
The students have enjoyed the work, too. They started in September and the bike they brought this week was a first prototype. They will take it back and make adjustments based on the feedback from Bernie, and from the kids. They asked the kids what colors the bike should be, for example. The project should be finished in April and will be exhibited during Penn State Harrisburg’s annual show of capstone engineering projects in May.
None of the students knew anything about Schreiber a year ago. All are from outside of Lancaster County. But they connected right away with Schreiber’s mission and wanted to do something to help.
“I just liked spending a year working on something that will help someone instead of making something for a company that might not even use it,” Nicole said.
“Knowing that it would be used every day is really important,” Cody Mackanick added.
The students raised the money for the bike themselves, about $1,500 in all, through a GoFundMe page. They spent a portion of that for the materials to build the bike.
And the rest? That money they will donate that to Schreiber.
Some 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.
At Schreiber, we love to partner with other community organizations where missions overlap. We have exciting news about two new collaborations to talk about.
The first is about art. Lancaster Artwalk presents its next Artwalk Weekend Oct. 5-7, and there are at least 36 different locations participating.
The vast majority are in downtown Lancaster’s many art galleries and shops, but Artwalk has moved into the suburbs this year by adding a stop at Homestead Village’s Bachman Center, right next to us here at Schreiber.
The Bachman Center will be open for Artsfest 10 a.m. to 5 p.m. Saturday, Oct. 6, and noon to 4 p.m. Sunday, Oct. 7.
The best news: We will submit some 90 pieces of art, all made by Schreiber kiddos, for display at Homestead throughout the weekend.
Art from our preschoolers and day care kids and by clients will be next to works by 11 Lancaster County artisans, including Barry Smith, Doug Good, Barbara Ulmer and Kitty Filling.
Jay Graver, Schreiber’s director of educational services, has been coordinating the gathering of art from Schreiber kids. There’s a chance you could see a piece by Malcolm Corley, a Schreiber kiddo and emerging young artist we wrote about recently.
The schedule at Homestead will also feature pottery and glass-blowing demonstrations (Saturday) and screen-printing by the Thaddeus Stevens STEM Truck (Sunday).
Donations made during the event will benefit the Homestead Village endowment fund. Schreiber is happy to support’s Homestead as they have supported us, through sending volunteers for our Intergenerational Program, their annual Mother’s Day Jewelry Sale and contributing to our special events, like our Gala and the Rubber Duckie Race.
The other collaboration taps more directly into our expertise in providing therapy services for children. In this case, these would be services for some of the most vulnerable children.
The Lancaster County Behavioral Health and Developmental Services is launching a pilot program to serve families that have babies born with Neonatal Abstinence Syndrome. The program could be expanded later to serve families that have other conditions present at birth, including Down Syndrome.
Neonatal Abstinence Syndrome, or NAS, happens when a baby is exposed to drugs in the womb and suffers withdrawl after birth. The condition can cause many serious problems, including low birthweight, breathing and feeding problems and seizures.
The county selected three Early Intervention special instructors to start the program, and one of them is Schreiber’s Catherine Donohue, an early intervention teacher who specailizes in working with kids ages birth to age 3 that have developmental delays.
“They were looking for people who wanted to do this, and I wanted to do this,” said Catherine, who has worked at Schreiber for 13 years. “I’ve always been interested in that hospital connection.”
That hospital connection will make this program different than the work she typically does. Most of the time, Catherine sees kids at home, at day care or here at the Center. For this new BHDS program, the babies will still be in the neonatal intensive care unit, and she will be working with families in their homes.
The teachers will show families “how can they prepare themselves and their home to bring a special needs child home,” Catherine said.
The program calls for teachers to work with biological families and foster families.
“That’s one of the things they were looking for in the teachers, and I’ve done that,” she said.
Starting 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.”
Barbara Willders Tomlinson heard recently there was a photo of her as a girl on the wall at Schreiber, and she stopped by the center recently to see it.
“There I am,” she said, pointing up at a photos that’s part of the large Edna Schreiber piece that hangs in our main waiting area.
Barbara Willders is 82 now. She grew up in Lancaster and was slated to go to the George Washington School for seventh grade in 1949.
Then polio interrupted. She was 13 years old.
That year, 1949, was six years before the polio vaccine, and Barbara was one of 947 cases of the disease in Pennsylvania out of more than 42,000 cases nationwide, the second highest number on record, according to archival statistics from the Centers for Disease Control and Prevention.
Barbara said she spent two weeks in the hospital and recuperated at home for most of the summer. She was able to attend school when students headed back in September.
“I was not paralyzed, but I walked funny afterward,” she said. “They used to let me go down the stairs first, by myself. And I had to wear these ugly brown shoes with big straps for about a year.”
She worked with Edna Schreiber weekly, using the Sister Kenny hot blankets that Edna had incorporated into her therapy work to restore muscle tone and movement.
“I would be wrapped up from my neck down to my feet,” Barbara said.
Her therapy continued through her time in seventh grade. She said Edna would pick her up at school, and they would go to what was then known as the Society for Crippled Children and Adults, where Edna worked.
“She was very kind and sweet,” Barbara said. “She would lay me down and have me do things, see how my legs were working.”
That’s pretty much what’s happening in the photo: Barbara is sitting on a table, and Edna is helping her straighten her right leg. Barbara is wearing a plaid skirt and a white blouse.
“That’s probably what I wore to school that day,” she said.
I helped her into a chair to pose for a picture. She uses a walker, but it’s not because of any lingering effects of the polio. An inner ear problem has left her with occasional dizziness and difficulties with balance.
She looked up at the photo again. She said she worked with Edna for about a year, and by eighth grade, she was mostly OK.
“I was one of the lucky ones,” she said.
Seventy years later, she was able to see how the work of Edna Schreiber continues. And she was able to see her own place in that history.
Ninette Jackson first sought out essential oils to help her dad, who suffered from Lou Gehrig’s disease. A decade and lot of education later, she has become an essential oil guru. And she’s right here in Lancaster County.
Ninette’s a lawyer by trade. But she didn’t enjoy it much. Her interest in essential oils gradually seeped into her life. The more she saw their benefits, the more she wanted to learn.
She became a distributor but saw a lot of her customers struggle with the cost. The law practice soon ended, and in 2010 Josiah’s Oils was born.
“Once I had kids, I became more interested in getting these for lower prices,” Ninette said. “I found ways to source them directly from the farms that make them. So I started a company to bring the oils in, bottle them and sell them.”
Over the years, Ninette has put in about 860 hours of study to become a certified clinical aromatherapist. Her husband Marc is an aromatherapist, meaning he hasn’t studied as much, and he manages their store on Meadow Lane in Manheim Township.
The Jacksons have five children, ranging in age from 15 to 7. In the middle is Josiah, who will be 10 in April. Josiah has Down Syndrome and visits Schreiber Fridays for physical therapy in the pool and occupational therapy.
“We’ve really enjoyed (therapy),” Ninette said. “It’s a nice way for him to get the expertise of the therapists, and it’s a great way to learn how to carry over what he does in therapy at home.”‘
Bernie Hershey is a Schreiber occupational therapist who encourages parents to use essential oils when it’s appropriate.
“A little girl who comes for all the therapies and preschool has a diagnosis that includes difficulty paying attention to any task and anxiety,” Bernie said. “Her mother and father use essential oils in a special mixture just for her to improve her attention and allow her to attempt the skills we are working on (to improve her fine motor skills).”
Josiah has had several surgeries, and Ninette has used diffused oils to help with his post-surgery recovery.
“The doctors at (Children’s Hospital of Philadelphia) saw he needed less morphine,” she said. “Diffusing essential oils really reduces the body’s pain response.”
She doesn’t claim her products can replace traditional medicine, and she has worked in partnership with Josiah’s doctors.
“We believe in medicine; we believe in antibiotics,” she said. “I see this as a complement to what doctors are already doing. We’ll consult with pharmacists. We tell families to talk to their pediatrician. Maybe these oils can help you take one less pill to manage pain or anxiety.”
She said her customers are diverse. Many are elderly, looking to manage pain or improve sleep or help with a relative with dementia. More than 50 percent are moms looking for help for their kids, especially kids with special needs.
“We saw early on the benefits of oils, especially with Josiah,” Marc said. “We saw it making a difference in our lives.”
The Jacksons want to make a difference in the lives of Schreiber families. They will offer a free workshop here on Wednesday, Feb. 21. The event will run from 6:30 to 8 p.m.
She will talk about what not to do, how to use them safely on the skin and mention a few options for some of the common parental challenges.
“Which oils are good for what,” she said. “My child has trouble focusing: What shoud I use?”
Parents looking for help for their child with autism or ADHD or sensory issues might want to come and hear what Lancaster’s essential oils guru has to say.