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!
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.
When 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 email@example.com to learn more or make arrangements to donate.
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.
The 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!
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.
It took three years from the time she was referred until Luis was finally able to start receiving services in 2013. That’s how long the wait times were for speech therapy.
With her second son, Kevin, doctors detected hydrocephalus during the pregnancy, and he was born in 2013 with his own set of complications.
At 14 months old, when it was time for him to begin services at Schreiber, Velveth said Kevin was able to start almost immediately.
“Very different,” Velveth said. “I’ve told friends to come here for services, and they got right in, too.”
Whether the wait has been long or short, Velveth said the benefits of coming to Schreiber have been the same: amazing.
With Luis, at the time of his diagnosis at age 3, he was nonverbal. By the time he started at Schreiber, when he was 6, he still wasn’t speaking.
“‘Mama,’ ‘Dada,’ that was it,” Velveth said.
“She started working with him,” she said. “After two or three months, we could see he was paying attention and starting to understand directions. … Then he started saying things. Probably when he was 7, he was speaking.”
Luis is in fifth grade now, doing well in a classroom for students with autism.
“He’s a good kid,” Velveth said. “He’s learning to express himself. He gets along with other kids. He has started to draw and have an imagination. Miss Barbara is the angel that opened the door.”
“Doctors said he’d never walk or eat by himself,” Velveth said. “When we started here, he couldn’t sit. He would just lay in bed.”
He began his physical therapy at 14 months with Lisa Stachler Volk, who showed Velveth how to help Kevin sit and how to massage his legs to help improve his muscle tone. At 18 months, Kevin started to roll over. Then he was fitted with braces and started learning to stand.
He’s 4 now, and he walked from his stroller back to a recent therapy session with no assistance, although he still wears a brace to support his weaker left side. He also receives occupational therapy to reduce his anxiety about walking on different surfaces. His brain had difficulty processing going from grass to the mulch of a playground, for example.
“He used to cry and cry and wouldn’t do it,” she said. “Now he can do it. All these little things he’s doing, like going down a slide, they’re normal for other kids. They’re so amazing for us.”
She has seen him progress in other ways, too. He used to be anxious about different food textures and would only take liquids; now he’s learning to chew. He’s much calmer and more confident. He sleeps better.
All of which is to say: Schreiber and the Marin family found each other at the right time.
Miles eventually received occupational and speech therapy, along with continuing his PT. He was with Jay Graver in preschool for two years, and he was joined the second year by his younger brother Levi.
“Miles was here three times a week for preschool and therapy, Levi was here twice a week,” said Dani, who lives in West Lampeter Township with her husband, David, and the boys. “We were coming every day for that year.”
“When we were looking around for preschools for Miles, I liked the emphasis here on diversity and that there are children of all abilities,” said Dani, who has an associate degree from Harrisburg Area Community College in early childhood education. “I liked it so much I’ve sent all my boys here.”
Well, almost all. The youngest, Asher, is only 4 months old. He comes along when Mom drops off Levi and Isaac, so he’s getting to know Schreiber, too. Even if it’s only as the place where he gets his morning feeding and a nap.
Soon enough, though, Mr. Jay can probably expect to see the fourth Brenneman boy come through.