Families

Scotty Chappell adjusting to life ‘untethered’

Scotty was born with a tethered spinal cord, meaning his spinal cord was attached to the tissue surrounding the spine, allowing little room for the spinal cord to move without causing discomfort or pain. At the age of 3, Scott had surgery to “untether” the spinal cord so it could move more freely and grow normally.

Starting about three months ago, Scotty began receiving occupational therapy here at Schreiber. Scotty’s mother, Tracy, said the family’s main goal with Scotty was to improve the fine motor skills he lacked as a result of his birth condition.

Scotty typically fears trying new things related to his physical senses. The first time he tried to use the ladder in Schreiber’s indoor OT gym brought him to tears because of anxiety. Today he confidently climbs with no hesitation.

Tracy has seen noticeable advancements in Scotty’s muscle strength and hand-eye coordination since he started at Schreiber. Through a number of activities involving strength, balance and aim, Scotty is no longer using his entire body to cross his midline to accomplish minor tasks, such as throwing a bean bag through a target hole or picking up something placed behind him. Fun-loving and emotional, Scotty always looks forward to spending time with Laura at Schreiber.

“All the therapists go above and beyond to make sure each kid in our family is involved,” Tracy said. She said her time at Schreiber has become a family experience. Scott’s sister, Ella, 6, has autism and has received therapy here, too. Tracy, who lives in Elizabethtown, said having the whole family feel so involved enhances their experiences.

During Scotty’s sessions, Tracy closely watched what the therapists do so she can use the same techniques at home. For example, she can now monitor how Scotty holds a pencil or uses scissors, so for the next week’s session he can be an expert.

Whether it’s squeezing putty, climbing a ladder, or swinging on the indoor equipment, Scotty is always prepared to progress in a fun and playful environment. And Laura is right there with him.

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Are you particularly grateful for the work of a Schreiber therapist? You can show your appreciation by making a small monthly donation in their honor. Just visit our DonateNow page here to set up your recurring gift. And be sure to include a dedication note as you fill out the online donation form. Questions? Call the Financial Development Office at 717-393-0425 ext. 105.

Schreiber speech therapist works her magic

Thomas started coming to Schreiber in January. (Note: That’s not his real name; his parents asked not to use his first name or their last name to protect his privacy.) He’s a cute, fun little guy with a thick thatch of blond hair.

His mother Mandy was feeling anxious about what she was seeing with her son. Thomas was talking by the time he was 3, but there were problems.

“He could speak short sentences, but he was pushing his words together and I couldn’t understand him,” Mandy said.

He had the vocabulary, but he struggled to get the words out. And then he would get frustrated or would act silly to redirect, his mom said.

After checking with their pediatrician and with their therapist at IU-13, she decided she wanted private therapy.

“So we came to Schreiber,” Mandy said.

They started working with Katie, who noticed something right away: Thomas was talking too fast.

“When he came in, he was hard to understand,” Katie said. “He talked really fast. He was making articulation errors, grammar errors. He was using wrong verbs. The first rule we had was: Slow down.”

Mandy said it was like she flipped a switch.

“By the third session, he was a different kid,” she said. “She gave him the tools in three sessions to make him just relax. She gave him the reassurance and the confidence to slow down.”

His problems aren’t as complex as some of the kids Katie sees. There’s no underlying diagnosis other than speech and language delay. And while each child is unique, it’s fairly common to see kids with language delays, Katie said. T was evaluated before he came to Schreiber, and that therapist recommended services.

“Sometimes, kids need services to correct those things,” she said. “Based on the great progress he has already made, starting therapy was a good choice.”

Thomas has a specific set of therapy goals. He’s learning to read cues so he’s aware when people have trouble understanding him. He’s working on the difference between past tense and present tense.

“He might say ‘we eated pizza’ or ‘we go to the store’ when he meant ‘we went to the store,'” Katie said.

He’s working on a couple of specific sounds that give him trouble, like making sure an “L” sound doesn’t slip into a “W.”

And, of course, he’s trying to take it slow.

Mandy said the difference is huge.

“He’s proud of his behavior,” she said. “He’s a storyteller, and he’s funny. He’s able to use words to make a joke. He’s T now – the T I always knew he would be.”

And she gave Katie and Schreiber all the credit.

“They are magicians,” Mandy said. “And that’s not everywhere. Even in the medical community, that’s not most places. This place is special.”

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Are you particularly grateful for the work of a Schreiber therapist? You can show your appreciation by making a small monthly donation in their honor. Just visit our DonateNow page here to set up your recurring gift. And be sure to include a dedication note as you fill out the online donation form.

Chris Yost teaches a new generation of young swimmers

She’s been teaching Lancaster County kids how to swim for more than 25 years, mostly at the Lancaster YWCA. She started volunteering at Schreiber about six or seven years ago, helping Education Director Jay Graver in the preschool classroom.

That led to Lisa Gilbert, who used to run Schreiber’s swim program, asking Chris if she would be interested volunteering as a Swim Buddy, teaching the preschool kids water safety.

“When Lisa left, I said to Jay, ‘I would do preschool swim for you as long as I could also do (private) lessons,” Chris said.

The funny thing is, Chris grew up in Baltimore and never saw an indoor pool until probably middle school.

“We swam in the bay or the ocean,” she said.

But she took to pool activities like a duck to you-know-what.

She started out in an aquatic exercise class for adults — as a participant. Then she had some opporutnities to help with some kids’ classes.

“One of the instructors saw me and said, ‘You’re pretty good with kids. We should get you certified’,” Chris said.

She’s been in the water ever since.

“She’s probably helped thousands of kids in Lancaster County learn to swim,” Jay said.

She has about 24 kids signed up for lessons now. Most are one-to-one lessons; occasionally with a sibling she might work with two kids at a time.
Thursdays are her busy day. She’s in the pool from 10:30 in the morning to past 7 at night. One recent Thursday, Colby Haines showed off his skills, jumping in at one corner of the pool and swimming diagonally to the far corner.

“He could not swim when he started,” she said. “A little nervous about getting in. Didn’t want to get his face wet. Now, he’s doing really well.”

And that’s what keeps her coming back: seeing kids grow. It’s an extension of everything that happens at Schreiber.

“The kids are so wonderful,” she said. “We like the inclusion idea. Kids feel so comfortable with any kind of child. The people here, the teachers, the therapists — they’re all here for the kids. It’s just a great atmosphere to be involved in.”

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Ever thought about volunteering at Schreiber? As Chris Yost’s story shows, there are plenty of ways to become involved. Be a Swim Buddy with the Schreiber S.T.A.R.S. preschoolers. Help in the Circle of Friends Academy classroom. Bring a group to Schreiber to clean, spread mulch or decorate for a holiday. For more information, contact Volunteer Coordinator Susan Fisher by email or at 717-393-0425 ext. 129.

‘Amazing little guy’ learning to play with friends

LJ has a number of diagnoses, including sensory processing disorder, attention deficit/hyperactivity disorder, autism spectrum disorder (ASD), and echolalia (a way of learning language characterized by repeating what another person just said). He receives speech and occupational therapy services.

Beginning in infancy, LJ’s guardians noticed many delays in his development, and he was referred to Schreiber by a local psychologist. He began his time at Schreiber in OT about a year and a half ago. LJ recently began receiving speech therapy with Jeremy Ewell, who is helping LJ learn social cues and improve his focus. Jeremy noticed LJ’s difficulty in concentrating and staying on task and developed strategies to improve his level of focus.

By frequently switching tasks and using a visual calendar, LJ is able to better process what his end goals are, giving him more incentive to remain focused. This is just one example of the many tactics Jeremy uses to build LJ’s cognitive progression. But it doesn’t seem like work to LJ, Kathy said. He starts every Wednesday saying: “Today is my day to see Mr. Jeremy!”

In spite of his challenges, Kathy Steibnaecher, his grandmother, describes LJ as a happy, music-loving 5-year old.

“He loves Mickey Mouse, Captain America, Winnie the Pooh, swimming and trucks,” Kathy said. “He’s always quick to tell us he loves us, say thank you, and share… He’s an amazing little guy!”

In his time at Schreiber, Kathy has noticed significant improvements with LJ. Even though he still struggles to interact with other children, LJ is now able to play alongside them. Parallel play with others is a large stepping stone for LJ for the end goal of socialization, Jeremy said. Kathy has also noticed the progress LJ has made with his focus.

LJ’s type of autism allows him to understand and follow directions, and he is capable of other kinds of communication, placing him socially ahead of many kids with autism.

“He has a lot going for him,” Jeremy said.

Jeremy’s work with LJ is a good illustration of how our therapists team up with parents and guardians to give families the tools that allows kids to practice at home the skills they learn at Schreiber.

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At Schreiber, our average reimbursement rate is 42 percent. That means for every $100 in charges we submit to insurance companies, we receive, on average, $42 in payment. Please support our work so that we can continue to provide services to LJ and the thousands of other children we see each year. Just visit our Giving page here, and make your donation today.

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.

Bethanie Allen’s pirate adventure becomes a book

Dan Fink: Take me back to the beginning. How did the idea for using a pirate story happen?

Bethanie Allen: I was working with a kiddo at Schreiber, working on shoe tying. None of the stories I was using were amusing to him – the bunny ear thing, the tree and the rabbit – none of it was getting his attention.

I was starting the process over again – you know, doing the X – and I was, like, what can I do? And the thought of a pirate story just popped into my head . And every step after that was pirate related, this whole journey of finding treasure… it kept his attention the whole time. And he was able to repeat the directions back to me, which was awesome, because his attention was not the best.
I kept doing it quite a bit with him to watch the carryover. And then I started to use it with every kid I had shoe tying goals for.

DF: At some point, then, you had the idea to turn this into a story book?

BA: I actually think Bernie (Hershey) mentioned it right after I told her about it. And then it was one of those things that just sat in the back of my mind. I knew a visual cue would help carry the story even more.

I tried to send the story out to some publishers, and it wasn’t getting picked up, which was really defeating. I talked to my husband about, and I finally said, “We just need to self-publish this.” I wanted to get it out to more people, and I knew it would really have an impact for independent shoe tying

DF: You had to learn how to publish a book. How did that process work?

First, I had to find an illustrator. We ended up finding an experienced illustrator online, Toby Mikle. He was able to help guide me through the process.

We started in October, and it took about 3 months. He got the illustrations done really fast. It took a lot of re-editing and making lots of little changes, then I finally had to hit submit.

It’s an exciting process, but it’s filled with anxious thoughts: What is everyone going to think about this?

DF: The book is out now?

BA: Yes, the book was released Jan. 11. I’ve been marketing it through Facebook and selling it on Amazon, and I have a few printed copies that I can sell. I would love to have it stocked in therapy places or toy stores or book stores. I’m working on connecting with locally owned, mom-and-pop kind of places.

DF: How will it feel to come back to Schreiber with your book?

BA: It means so much to come back and do (the book event) where it all started. This might sound corny, but it’s almost like I’m following the map back to Schreiber.

It was so hard to leave Schreiber, I can’t even tell you… I’m married now. We have a great kid. I wouldn’t change it for the world. In a way, it’s like this book is a piece of Schreiber that’s with me all the time.

Bethanie Allen works at Kidswork Therapy Center in Union County. She lives near Lewisburg with her husband Josh and their 2-year-old son Braxton.

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.

Sophia Clay thrives at Schreiber

Kelly was looking for outpatient physical therapy to continue what she was already doing in the home, and Schreiber had what she was looking for — a new perspective and some new ideas.

Sophia has cerebral palsy and struggles to control her body movements. Gaining muscle strength and control is important for her, as this will help her stand and walk. Because it is hard work, physical therapy is Sophia’s least favorite activity. The therapist has started working on relaxing techniques that will also help with movement control. Sophia’s mother helps her exercise and stretch during the therapy sessions.

“I’m right there with her,” Kelly says. “The best way for parents to help their kids is to be involved here. Therapy is only once a week, so you have to work on these things at home if your child is going to progress. Each month I come away learning something new.”

Kelly knows that with constant work Sophia will gain greater mobility and the skills necessary to live a better life. Sophia is able to move her own wheelchair to get around and has positive interaction with her peers at school. As she learns to better control her movement and speech it will improve her ability to communicate and interact with those around her.

Sophia’s condition requires more than one type of therapy. At Schreiber, Sophia is able to work on her gross and fine motor skills, develop her speech articulation, and learn important social skills.

During speech therapy, Kelly watches Sophia through an observer’s window.

“She’s come a long way with her speech.” Kelly says. “I learned different ways to help her make sounds that she has trouble pronouncing from watching the therapist work with her here.”

Kelly plans to enroll Sophia in Schreiber’s summer camp program and looks forward to meeting other families that may have children who will become playmates for her daughter. One way she hopes to develop relationships is through a newly formed parent support group. The group, which plans to meet monthly, was formed by parents who want to network, encourage and connect with other families experiencing similar challenges.

“I’m glad we’re at Schreiber because there aren’t a lot of places that offer this kind of support,” Kelly says. “Everything she needs is right here. And all the therapists show concern for Sophia and for us as a family.”

Engineering progress for Teddy

Inside the vest, the three students had built a small vibrating motor. They had spent more than a year researching and doing early work on the design, and they came to Schreiber April 5 for the first test.

Brain damage

at 3 months

The whole process started in December 2014, when Teddy’s mom, Jaclyn Rhoades, had submitted a proposal to Elizabethtown’s Engineering Department asking if students there could design a vibrating device to improve Teddy’s muscle tone.

The three students — Jake Evans, David Good and Buck Kauffman — were intrigued enough to take on the project. They met with Jaclyn to find out what problems the therapists had and what they could do to help them. They found that creating a hands-free vibration device would make therapy easier for everyone involved.

Teddy suffers from hypoxic brain injury, brain damage from lack of oxygen. His mom found him face down in his crib when he was 3 months old, blue and not breathing. She revived him, but the damage left him with cerebral palsy, which affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.

Teddy spends most of his time in a wheelchair stroller, and he lacks the strength to straighten his spine or keep his head up for long. So he slumps, and his head tends to flop forward.

Megan has had success working with a hand-held vibrating device during home visits to Teddy. The vibrations stimulate the muscles to activate spine and trunk erection. The students observed one of these visits and saw what a struggle it was to hold Teddy and use the device. They thought a vibrating vest might free up their hands and make the session easier and more productive.

They started working on the design in January 2015 and began prototyping this past January. They bought a child’s life jacket, tore out the inflatable material and built the motor, powered by two AA batteries. The installed motor could be moved to different areas of the vest, depending on which area of Teddy’s back was the target for the vibrating.

Total cost of the materials: $50.

A successful test

On the day of the test, David, Buck and Jake stood behind Mom as Megan and Alissa snapped on the vest and flipped the switch.

Nothing happened. The vibrations weren’t hitting the right spot.

Megan moved the motor up higher on Teddy’s back and tried again.

Right away, Teddy began to slowly straighten up, as if his head and shoulders were connected to some unseen strings from the ceiling.

Jaclyn’s face lit up in a smile, and the three students reacted with something approaching astonishment.

“Sweet!,” Jake said. “It’s doing exactly what we thought it would do.”

“It’s kind of surprising to see, actually,” Buck said.

“Definitely a good feeling,” Jake added.

And Teddy? He just took in his new view of the world, scanning the smiling faces that surrounded him, probably wondering what all the fuss was about.

Meet the 2016 Ambassadors: Sophia Panzini

Sophia Panzini

Age: born 3/21/97 (18, turning 19 in March)
Diagnosis: Autism spectrum disorder
Parents: Reenie and Peter Panzini, Manheim Township
Siblings: Edward, 20; Carina, 10
Favorite activities: Listening to music, adult coloring books, playing games on the Wii, collecting jewelry
What she watches and listens to: The Food Network, “Spider Man” movie, Destiny’s Child
Favorite food: “Mac and cheese – gluten-free, please!”
When she grows up she want to: “Be a Hollywood singer.”
Three words to describe her: Beautiful, sweet and funny
What else to know about Sophia: She attends Schreiber’s Club 625 events, making friends and being a teenager.

Like a lot of kids with autism, Sophia Panzini is reluctant to look people in the eye when she talks to them. But when she’s posing for a picture, she loves the camera — and the camera loves her.

Here’s her story, in the words of her mom Reenie.

“Sophia was diagnosed with autism when she was 8, and we had just moved to Lancaster from New York City. Her pediatrician told us about Schreiber, and we practically ran there! We didn’t know anything about therapy or autism, and we were literally walked slowly through everything step by step. Sophia learned to have conversations, hold writing instruments, walk up and down stairs without crying, and so much more. We (as a family) learned that we’re stronger than we thought, and that you can get through anything with enough love and a lot of humor.”