Disabilities

The Extraordinary Give is coming

Step 1: Join us here at the Center on Thursday, Nov. 9, for Give Thanks for Schreiber Night. Starting at 5 p.m., we will have hundreds of luminaries set out around the outside of the campus. Inside, we’ll have a bunch of fun stuff planned, from crafts and games to face painting and pumpkin decorating. So stop by for some fall family fun, then take a moment to light a candle in honor of or in memory someone special with a connection to Schreiber. And we’ll have a special treat for you to take home with you, we promise.

UPDATE, 10/23: The first 500 visitors to light one of our luminaries will receive a free Stroopie from Lancaster Stroopies. If you haven’t had one of these, yet, don’t wait. Come to Schreiber on Nov. 9, light a candle and get a Stroopie.
Step 2: Mark your calendars for Friday, Nov. 17, and bookmark Schreiber’s donation page at www.extragive.org. Here’s our donation page. The giving starts at midnight, and the more donations we receive between midnight and 3 a.m., the better our chances for being at the top of the Extra Give leaderboard. And be ready to share your donation on social media (and tag us on Facebook and Twitter): Post about your gift with #helpschreiberkids, tag friends to encourage them to give, and Like and Comment when you see updates. And we’ll again be downtown on the day of the Give with our friends from FM97. In past years, you could find us at Lancaster Dispensing Co. With the fire there recently, we will be in a different spot (details to come!).

UPDATE, 10/12: We confirmed that we will have our Extra Give party at the Federal Taphouse, at the corner of Queen and Chestnut streets, and just two blocks from the big Extra Give party at Lancaster Marriott at Penn Square.

UPDATE, 10/19: We will be at the Federal Taphouse throughout the day on Nov. 17, starting when they open for lunch at 11:30 a.m. When you are out and about downtown that day, stop in for lunch, dinner or drinks, and take a minute to donate to Scheriber. FM97’s DC will be on hand to play music from noon to 6 p.m. If you come by after work, we’ll have live music by Jen and Brad Rhine from Blue Sky Falls from 6-7, followed by MOE Blues from 7:30-8:30.

UPDATE, 11/16: We gratefully acknowledge support from three companies providing Business Matches for this year’s Give: Atlee Hall, Mid-Atlantic ProTel and Medisys Solutions.

Step 3: Remember to give extra during the Extra Give. Your past support has meant so much to us, but the demand for our therapy services continues to surge. Every dollar you donate helps us serve as many children as possible.

Please consider donating to Schreiber during the Extra Give on Nov. 17. When you give extra, extraordinary things happen.

Seeing the glass half full with Shelby Stroman

Shelby was born with numerous complications tied to having Aicardi syndrome, a rare genetic disorder that occurrs almost exclusively in females. The condition leads to difficult-to-control epilepsy, developmental delays and retinal defects.

Steve is the primary caregiver during the week, so he’s the one we usually see here at Schreiber with Shelby. In his part-time work from home, he’s an environmental and policy consultant for nonprofit advocacy groups. Mom Judie Howrylak is a physician and medical researcher at Penn State Health Milton S. Hershey Medical Center. They live in Manheim Township.

Steve said Shelby has been back and forth to Children’s Hospital of Philadelphia several times to treat the severe epilepsy, most recently in early 2017.

“She had a very rough patch the past two months, but she seems to be recovering,” Steve said in early May. “She’s actually this sweet, very resilient warrior princess. It’s amazing how strong she is. I think that’s what makes her captivating to people.”

The family started coming to Schreiber in March 2016 to receive all three types of therapy — physical, occupational and speech.

In that time, Shelby has seen seven different therapists, both for home visits and here at the Center. Steve has been consistently impressed with all the therapists and their care.
“We’re extremely pleased with the quality of the therapy and the concern and empathy of the staff,” he said. “We’ve had a great experience.

“We’ve been very fortunate to get several pieces of home medical equipment, some of them very expensive. Kristie Schreoder took the lead in writing the order so that it could be paid for by insurance. It’s not always easy to make that happen. You need a lot of competence and experience, which Kristie obviously has.”

With all her different issues, improvement can be hard to see, let alone measure.

“We have goals and look for progress, but sometimes circumstances change when she has a setback,” Steve said. Before her most recent setback, he said, “She was very close to being able to pull herself up into a sit. Now we’re trying to rebuild her arm and leg strength.”

He keeps his eye on the big picture, which he said is to maximize her developmental potential. What that means exactly nobody really knows.

“The life expectancy for what Shelby has is eight years,” he said. “We’re hoping to do everything we can to push the envelope as much as possible. There’s a girl in Australia with Aicardi who sings and walks. The oldest surving person has lived to be in her 30s. We’re hoping with improvements in drugs and treatment that Shelby can push those boundaries.”

That might seem like a steep hill or long odds or whatever metaphor you might choose. Steve picked a different one as he watched Shelby prepare for another round of core work on a big blue exercise ball.

“We tend to see the glass half full.”

***
Does Shelby touch your heart? Should every child who needs our services be able to receive them? You can help make that happen. Just visit our DonateNow page here and set up a recurring gift. Just $10 a month will pay for one half-hour of therapy for one child like Shelby. Questions? Call the Financial Development Office at 717-393-0425 ext. 105.

Summer means camps at Schreiber

Let’s start with our new camps.

First, we’re offering two handwriting camps. Ready to Write is aimed at younger kids, ages 41/2 to 6 (entering preschool or kindergarten). This camp develops readiness skills for writing with focus on motor and perceptual skills required for writing fluency.

The Write Stuff is for 6-8 year olds (enterting first through third grade) who have already learned letter and number recognition and printing but need some extra practice. Focus is on foundational skills of posture, fine motor control and visual-motor skills.

Both camps will be led by a licensed occupational therapist, and the emphasis will be on fun. All campers will receive their own handwriting kit.

Handwriting camps will run twice a week (Mondays and Wednesdays) for six weeks starting July 10. For more information on times, dates and prices, visit our summer camps page here.

The other new offering will be our Sensory Explorer Camp. This camps will offer young children a broad range of therapeutic activities that involve sensory play and social skills development. It is open to all children of all abilities. Activities will include: water play, arts and crafts, outdoor games, music and nature hikes.

This camp will serve kids ages 4-7, and you can pick from a morning or afternoon session. The Sensory Explorer Camp will run Aug. 7-10. For details, visit the summer camps page here.
And don’t forget about our flagship camp, Camp Schreiber. In its 21st year, Camp Schreiber offers the classic week-long summer camp experience for kids and youth ages 8 to 21. Weekly sessions start June 26 and continue through the week of July 24, including an abbreviated camp week on July 5-6.

Finally, for teens we have our Club 625 Camp, the summertime version of our Club 625 outings. Young people can reconnect with old friends and meet new ones during our camp weeks in the first two weeks of August. This program offers fun on-site activities, as well as opportunities to work on social skills during outings in the community.

To register for any of our camps, visit our registration page here.

At Schreiber, we walk next to kids and families

She’s his physical therapist at Schreiber.

Juelz started receiving services at Schreiber in late 2016. He has what is described as high-functioning autism, and he also receives speech therapy and occupational therapy, in addition to PT. Juelz’ major challenges include poor muscle tone, balance and coordination. He also struggles with postural and gravitational insecurities. That means Juelz is anxious about a lot of ordinary movements, particularly movements that require balance, and he is afraid to have his feet off the ground.

Liz said her work with Juelz involves improving his strength and getting him more comfortable with moving his body. The two of them use the on-site playground and equipment in our therapy gym to help Juelz become more confident with motor planning and to apply those skills outside of Schreiber.

To get over his fear of being off the ground, Juelz practices jumping. He has gone from essentially not jumping at all to being able to jump off short steps without hesitation. To work on coordination, Juelz has learned to make the transition from walking up stairs using a two-step pattern (placing both feet on the same step before climbing to the next step) to a reciprocal stepping pattern.

“He’s made tremendous progress with his balance, stability and confidence,” Liz said.

At home, Juelz struggles to hold conversations, has a difficult time eating and has a number of sensory issues, including a sensitivity to certain textures. Michelle Santos, Juelz’s mother, said Schreiber and its therapists have had a large impact, making their lives at home easier.

In addition to cognitive and physical disabilities, Juelz suffers from anxiety, which is yet another hurdle that Santos family has to face. By helping Juelz gain trust in his own body, Michelle has seen noticeable improvements in Juelz’ physical abilities. He is less sensitive to different textures and has improved his speech in their short amount of time at Schreiber, Michelle said. All of it means he is less anxious now, his mom said.

Fellenbaum’s heroes strike again

Laurie is a teacher at Schaeffer Elementary School in the Manheim Township School District. Those intial class lessons led the kids to collectively conclude: “We should do something that helps other people.”

Laurie said her father used to volunteer at the Lancaster County Easter Seals, the organization from which Schreiber Pediatric was formed. Laurie and her sister did a small backyard carnival fundraiser for Easter Seals for a few years.

The kids were a little unsure about what to do. They had a little bit of “what can kids do” attitude.

“When I told them what I had done, as an example of kids helping kids, they were all about (the carnival idea),” she said. “And doing something for Schreiber came up pretty quickly from there.”

The kids wanted to take over the annual PTO Fun Fair the school holds each spring. The PTO said yes. That first year, in May 2015, they added a Schreiber Night at Rita’s, received some items for a raffle and organized the first Fellenbaum Fun Fair.

That first group, students just from Laurie’s classroom, raised more than $1,000.

For 2016, they expanded the project to the entire second grade at Schaeffer, about 75 kids. The kids wrote letters to solicit sponsors and ask for more raffle items. And they raised more than $4,500.
Like any good fundraising professional, Laurie wanted to find ways to keep the project growing. For this year, she added Schreiberthon. Kids took sponsor sheets home in December and were asked to gather pledges through early January, with the understanding that all donations would go to Schreiber.

Laurie thought the kids would come in with a couple hundred dollars.

“The money was due back Jan. 9, and when it started coming in, we were amazed,” she said.

Laurie, the other teachers, a group of parent volunteers and the second graders held a Schreiberthon celebration Friday afternoon to do the big reveal for the total.

The final amount: $4,042.72.
Of the 76 kids in the three second-grade classrooms, 58 managed to bring in at least some pledge money. The top girl and boy fundraisers each received a new bike, courtesy of a donation from Target.

Ainsley Bounds led the girls, collecting $450. Charlie Beecher raised $500.

Beyond all the cheering and celebrating, the kids did a lot of learning. They learned about empathy and acceptance. They learned about math and handling money.

And they learned that second graders can make a difference in their community, and that might be the best lesson of all.

AMBUCS rides to the rescue

There’s just one problem. They can be expensive.

This is where AMBUCS comes in. AMBUCS is a national nonprofit “dedicated to creating mobility and independence for people with disabilities,” according to its website.

Most of the work nationally and locally involves helping families obtain Amtryke therapeutic tricycles. And that’s why Howard Livingston and Bruce Schmoyer visited Schreiber Monday morning.

Howard and Bruce are two longtime Lancaster AMBUCS volunteers, and they stopped in to assemble a new bike for Elizabeth Owens and her son, Dorian. They live in New Holland.

Dorian was born with hydrocephalus. While he was still in utero, fluid developed inside his skull. The resulting pressure caused brain damage that left Dorian with ataxic cerebral palsy, seizure disorder and deafness.

He has been coming to Schreiber since he was 2; he’s 16 now. He receives all three therapies here, including physical therapy with Laurie Panther.

She said if a child can propel the bike on their own or if riding helps him or her with their endurance or strength, they are a candidate to receive one of the bikes.

Laurie surprised Dorian with the bike that Howard and Bruce had just finished putting together. His eyes lit up when he saw it.

“This is a big deal for him,” his mom said as Dorian wheeled his new bike through Schreiber’s hallways. “It’s good for his coordination and his core muscle strength. And the biggest thing is the feeling of independence. This will be his bike for him to ride on his own at home.”

Laurie knew Dorian would be excited.

“We ride the bike we have every week here,” she said. “He asks to ride it. It’s his favorite thing to do. Being able to surprise him with it today was pretty cool.”

The Amtryke bikes aren’t cheap. One can cost anywhere from $1,000 to $2,500 or more, depending on what features are required.

AMBUCS pays for them. A family or an organization such as Schreiber will put in the request. AMBUCS reviews the request and, if approved, orders the bike from Amtryke.

“We were (buying) about two or three a year up until about a year ago,” Howard said. “The local group decided we needed to ramp it up. We said we could do better. We bought 12 bikes just through our chapter in the past year.”

AMBUCS funds its local bike buying program primarily through an annual art auction, Howard said.

This was the fourth time Laurie has arranged for a family to receive one of the bikes, she said. It doesn’t get old.

“This was a huge deal for me today,” she said. “Most kids like riding a bike. This gives them the ability to ride just like their friends or their brothers and sisters. We’ve had kids go on bike rides with their family for the first time instead of being pulled in a trailer.”

Mom is probably already planning that first family ride with Dorian.

Justin Walker returns to Camp Schreiber — for his job

Justin’s time at Schreiber goes back 20 years. He was born with osteogenesis imperfecta, commonly known as brittle bone disease. He started coming to Schreiber when he was 2 and at 4 was named a Schreiber ambassador.

He received therapy, attended preschool (and worked with Jay Graver, Mr. Jay, the current preschool and camp director) and spent many summers at Church of the Apostles for camp.

“So many memories coming in here,” Justin said, looking around the church’s gym. “It’s so big, and we had so much fun. It was a great way to socialize and make friends. I still have friends that I made here at camp and preschool.”

Justin returned as part of his job. He’s an administrative officer at the Pennsylvania Human Relations Commission. The main part of his work involves going to schools, libraries, camps and other children’s groups to read “The Fair Housing Five,” a kids book about fair housing agencies.

It’s the latest step in the journey for Justin. He went to college, graduating from York College with a degree in public relations. He drives every day from his home in Mechanicsburg to work in Harrisburg. He is a real live example of how the Schreiber spirit helps children lead lives as productive adults.

“My experience at Schreiber taught me: There are no limits,” Justin said. “Schreiber was always very encouraging. The message was: You can do whatever you think you can do, you just do it differently. It was never about what you can’t do. Always what you can do.”

Sophia Robles Finds Hope at Schreiber

Since the disease affected Sophia’s legs, she compensated by pulling herself around with her arms and hands. This built strength in her upper body, but from the waist down she was extremely stiff. Her muscles were so tight that she couldn’t roll over until she was a year old, and she needed the assistance of a walker to get around at the age of 2.

The June Smith Center recommended that the Robles bring Sophia to Schreiber Pediatric for more intense therapy.

At Schreiber, Sophia grew socially, as well as physically.

“When we first came to Schreiber, she wouldn’t go near people,” her mother said. “She would start screaming and wouldn’t leave my side.”

As Sophia became comfortable with the surroundings at the Center, she started to relax and open up. Now she responds with a sweet engaging smile to those who talk with her.

Physical therapy was also a challenge at first.

“I tried to stay with her during the therapy sessions,” Her mother recalled, “but she was resisting and crying out for me, and it was too hard for me to be in there. I had to step out of that situation.”

Malexi began waiting outside the therapy room. When Sophia was alone with the therapist, she started to listen and began making progress. But her limited range of movement presented challenges.

Unusual surgery leads to breakthrough
After evaluating Sophia’s condition, an orthopedic doctor recommended she undergo an operation that would release her tight tendons. It was a surgery that is usually not recommended for children under age 7 because it may need to be repeated later in life. However, in Sophia’s case, a CT scan revealed that her hips were so restricted that they would likely become dislocated if she didn’t have the surgery sooner. So, at the age of 4, Sophia underwent the operation, which required her to be in a cast from the waist down for six weeks.

Before the operation, Sophia’s mother had trouble changing her diaper because she couldn’t bend her legs. After surgery, the cast continued to make diaper changes difficult. But, when the cast was removed, both Malexi and Sophia were overwhelmed by its success.

“I heard her saying ‘open…close’ over and over,” Malexi recalled. “She was laying on the bed, saying ‘open, close’ as she moved her legs back and forth for the first time.”

Sophia started light therapy, which became more intense as her body healed. The therapist was able to teach Malexi how to do the exercises with her at home. With the help of therapy, Sophia increased her mobility, and in one year was walking without the assistance of a walker.

Sophia’s success opened the door to a lot of changes for her and her family. When she came to Schreiber she could barely sit down.

“She was not flexible at all. Her posture was hunched and her legs wouldn’t straighten when she sat down. They were bent when she stood, also,” Malexi said. “Now she is walking, and she can bend down to pick up something from the floor, and she is running. So she has done a complete 360.”

Although she runs with some difficulty, it is a treasure to see Sophia’s joyful strides down the hall outside the physical therapy room at Schreiber. She will continue to improve both physically and socially, and can look forward to a promising future.