Families

Meet the 2016 Ambassadors: Graham Lodwick

Graham Lodwick

Age: He turns 12 in August
Diagnosis: Deaf and childhood speech apraxia
Grade and school: Fifth grade, John Beck Elementary School
Parents: Wendy Williams and Karl Lodwick of South Lebanon Township, Lebanon County
Siblings: Graham has an older brother Reese, 14
Favorite activities: Playing with pets, playing video games, bowling and riding his bike
Favorite food: Pizza
What he watches and listens to: “Drake and Josh,” “Minions,” the song “The Best Day of My Life” by American Authors
When he grows up, he wants to: Be a car designer
Three words to describe him: Happy, silly and loving

Graham has been coming to Schreiber for speech therapy since he was 6. Dorlas Riley, Schreiber’s lead speech therapist, diagnosed Graham with speech apraxia. The condition is defined this way by the American Speech-Language-Hearing Association: Graham knows what he wants to say, but his brain has difficulty coordinating the muscle movements necessary to say those words. He’s also deaf and has a cochlear implant.

So in his twice-a-week therapy at Schreiber, he practices his speech sounds and works on listening to get the best use of his cochlear processor. He’s also working on talking in complete sentences. The work is paying off. When he started with Dorlas, he communicated entirely by signing.

“(Now), he can carrry on a conversation with someone who does not use sign langugage,” says his mom Wendy.

It takes a lot of effort to make that kind of progress. But his therapy with Dorlas doesn’t seem like work.

“He loves it,” Wendy says. “Even after six years, he still looks forward to coming.”

Meet the 2016 Ambassadors: Sophia Clay

Sophia Clay

Age: She turns 5 on March 28
Diagnosis: Cerebral palsy
Parents: Kelly and Adam Clay of Manheim Township
Siblings: None
Favorite activities: Playing with her toys, going to the beach, watching movies on her iPad, riding her bike around the neighborhood and seeing plays at local theaters.
Favorite foods: Pizza and ice cream
What she watches and listens to: Disney movies, “Doc McStuffins,” “Sofia the First,” princess movies
Three words to describe her: Happy, outgoing and determined
What else to know about Sophia: She has a black lab named Dallas.

***
Sophia Clay and her mother, Kelly, attended a Schreiber board meeting late in 2015, and Sophia charmed the room with her smile and her spirit. Sophia’s cerebral palsy means she uses a wheel chair for a lot of her day. Her therapy at Schreiber is intended to help her be out of the chair more. “She’s working to become stronger in all areas of her life,” Kelly says. “She practices with a gait trainer so she can stand on her own. She works on sitting up without assistance. She practices her fine motor skill, her articulation and eating on her own.”
It’s the articulation — how clearly she speaks — where Sophia has shown the biggest progress, her mom says.
“Sophia’s language has come a long way,” Kelly says. “When she started, she could only say a few things. Now, she can say 10-word sentences.”
And that’s just the beginning. With her determination, she will be ready to make speeches in her class when she starts school.

Bike path project gets green light

When East Hempfield Township recently approved a stormwater permit for Schreiber, it was more than a routine piece of municipal government business.

That green light means the Center can move forward with plans to build the bike path on the Schreiber campus along Good Drive. Schreiber raised more than $75,000 for the project through fundraising and in-kind contributions, enough to cover the construction costs and to create a fund for ongoing maintenance costs. The largest piece of the fundraising came from the Stabler Foundation, which provided a $60,000 gift.

We’d also like to acknowledge the generous support of the staff at two local companies. Todd Vaughn, senior project manager at David Miller/Associates, a landscape architecture and civil engineering firm, and Paul Nikolaus, an architect with RLPS Architects, spent countless hours drafting and revising plans as they navigated the municipal approval process — and neither firm has charged us one dollar.

The bike path will represent an important upgrade to our facility and to the resources for our Therapy Department. For years, kids have had to ride bikes through Schreiber’s hallways or in a small corner of our parking lot — hardly ideal.

That all changes this year. We will be able to break ground in the spring and complete construction by the summer.

We can’t wait.

Jedi training coming to Schreiber


How did Star Wars Week at Schreiber come to be?
Go here for a surprise.

“One of the biggest things Luke Skywalker had to do to be a Jedi,” Bernie says, “was to learn to control his reactions to frustration that would make him upset and angry activate the Dark Side. So we will be using that hook with many of the clients who are learning to conquer new daily routines that are hard, like tying shoes.”

That’s just the start of what Star Wars Week at Schreiber will offer.

“Jedi knights have to learn balance and core strengthening activities, so we will have the Jedi Training obstacle course,” Bernie says.

“Jedi knights learn how to use their abilities to positively sway others, we will be practicing social skills.

“Jedi knights learn other languages. We will have some select Yoda and Darth Vader expressions for the children to listen to and imitate.

“Of course there will be Storm Troopers to target, and we will be using our powers of observation and visual scanning as well to be aware of hidden dangers.”

The entire center will be turned into a Jedi Training Center to help celebrate Schreiber Pediatric’s 80th anniversary year this year. The multipurpose room will be the main area decorated in the Intergalactic mode, but already Speech Therapists have their lighting up and Physical Therapists have begun their decorations.

Update: Some folks from the Central Pennsylvania Avengers will be on hand Thursday afternoon, Jan. 28. Jason Johnson is director and founder of the group, which consists of adult hobbyists who dress up in superhero costumes and do appearances to entertain. Their motto is: “We came, we saw, we made smiles.” Expect to see a Kylo Ren, a Rey and a Darth Vader (non-scary variety) roaming the halls of Schreiber that day.

A dad’s story: One family’s long road to recovery

Unlike many other types of injuries, a traumatic brain injury leads to many struggles on many different fronts as we have come to find out. I would like to share the steps we have taken, good and bad, so that anyone else who has to travel this road will have an idea of how to make their way.

That is one thing that has always frustrated me: being out there trying to figure out the road ourselves.

We are a family of four. Erin and I have been married for 27 years. We have two children, Jason (18) and Kiana (21). Kiana suffered her TBI in a car accident on Aug. 27, 2005. She and Erin were on their way to school for a basketball open gym when another car slammed into theirs broadside. The force of the impact shattered Kiana’s face from her eyes up. She was 11 years old.

That day turned all of our lives upside down. Jason, who was a happy kid in third grade at the time, had to stay with multiple friends and family as we spent time with Kiana at Hershey Medical Center. Kiana was a good student and a successful athlete. She played both softball and basketball and competed in horse-riding competitions. But she has spent the past 10 years trying to work her way back, a struggle that still goes on and, of course, has its ups and downs.

Kiana had to relearn everything. In her 84 days in Hershey, she went the full spectrum from not being supposed to survive to coming home right before Thanksgiving and her birthday, then going to Schrieber Pediatric for physical, speech and occupational therapy.

We are 10 years into this journey, and, yes, there were and are some really tall hurdles to get over for all of us. But God has been so good to us. Kiana continues to improve and fight to get back what was lost.

If you’d like to check out more information on her journey, please feel free to check out her story on CarePages.com (registration required), an online community for visitors to share the challenges, hopes and triumphs of anyone facing a life-changing health event. We started this page only a few days after her accident and have continued it to this day.

We have learned many things along the way, and I have a few topics in mind for future blog posts, including:

  • Living with the aftermath of a traumatic brain injury
  • Navigating the school system when you have a child with a physical and mental challenge
  • Advice for parents whose kids are transitioning to adulthood
If you have questions or suggestions for topics to cover, I’d love to hear from you. Contact me at keeya@epix.net.

Troy Brown and his family live in Gap.

New group offers resources for parents

***

Hi everyone!

This is just a recap of our get-together held Sept. 17 at the Olde Hickory Grille. About 15 of us met in the party room. There was lots of chatting and making friends.

Some parents gave information on applying for Social Security’s Supplemental Security Income (SSI). Their information came from experience, and we had handouts printed from the SSI website. REMEMBER, none of us are SSI employees, so the info shared is coming from parental experience. You have to do what is right for you and your kiddo. Apply in person, online, phone, whatever works for you. Now you know there are options.

We also shared information on a new exercise class available for teens and young adults with special needs at Spooky Nook. Classes are being run by the I AM ABLE Foundation and will start at Spooky Nook in mid-October.

The next Parents 625 get-together will be 6:30-8:30 p.m. Friday, Oct. 23, at Schrieber Pediatric. We may have a physical trainer from I AM ABLE speaking to us that night for a bit, then afterwards… you know, chatting and Halloween fun! Yes, I’ll be in costume.

Club 625 is having its Halloween Party that night, you can email Carla Yando or Jay Graver for more information on that.

See you soon!
-Reenie

Reenie Panzini lives in Lancaster, Pennsylvania (originally from Brooklyn, NY) and is the mother of three. Her 18-year-old daughter has a diagnosis of autism spectrum disorder (ASD) and is transitioning into adulthood… whatever that means.

The best things in life are dirty

Most adults remember playing in the mud, but ask children now and you will hear a different story. For reasons too numerous to list, children are not touching dirt or playing in it. And if they do, immediately out comes the hand sanitizer!

The Schreiber courtyard was formed when an addition to the building was built back in 2006. At that time, the courtyard was little more than concrete and a drain. Under the guidance of Recreation Therapist Lisa Gilbert and with help from volunteer Don Grayson, we built a few raised beds for strawberries and flowers.

In the 10 years since, we have added more containers for grapes, rasberries and blackberries, along with some wind chimes and wind-blown decorations. Kids can paint the containers in bright colors. A gift from Edna’s Angels, our women’s giving circle, allowed us to add slate blackboards and large chimes for the kids to play.

The kids completed a unit this spring on planting and caring for seeds. The seeds and peat pots were generously donated by KimRik Garden Center, Willow Street. The kids transplanted the seedlings into the courtyard containers with their identifying popsicle sticks to foster engagement and ownership. The children have been able to check on their plants, and we’ve had some kids harvest some of their plantings. For many, this will be the first time they pick a vegetable and taste it!

For some of our Schreiber kids, this has been their first time to touch dirt. As part of her occupational therapy session, Kiera K. was positioned so that she could stand and shovel dirt into the peat pot for the seeds. Kiera is just beginning to learn to use a spoon because all of her life so far she has been fed through a stomach tube. Kiera’s parents were amazed at how much she enjoyed touching the dirt!

With all the intensive medical care she has required in her 7 years, her mother said, “I never thought to let her play in dirt!”

In fact, gardening with children not only yields flowers, fruits and vegetables; the children are part of the growth, too!

There’s plenty of evidence to support gardening as a valuable therapy strategy. At Schreiber, we use gardening as part of our normal treatment plans. From our experience, children are more willing to taste or sample vegetables and fruits they have helped raise. There are many reasons, both medical and psychological, for children to develop food aversions. Once those food aversions have become entrenched they are difficult to change. Gardening is one strategy used in desensitizing a child to try a non-preferred food such as vegetables.

We plant varieties (usually heirloom varieties), of vegetables, fruits and herbs to provide our clients a multisensory experience when they enter the garden. We include the typical (chives, parsley, onions, thyme,) to the unusual (a plant that smells like buttered popcorn).

We incorporate other activities into these courtyard sessions: writing on the chalkboard; carrying a watering can, squeezing a sponge, all of which provide sensory benefits.

Because of their children’s experiences in the courtyard garden, more Schreiber families are planting flowers and vegetables at home in their gardens or in containers. They are incorporating into their daily lives the lesson they learned here.

And they are finding out that, yes, the best things in life really are dirty.

Bernie Hershey is an occupational therapist at Schreiber Pediatric Rehab Center in Lancaster, Pa. She has been helping kids slide on scooters, balance on balls and climb on ropes for more than 30 years, all in the name of helping improve the quality of their lives.

No, really. Thank you

Here’s one from April, just after the news broke about the United Way of Lancaster County’s decision to end its funding for Schreiber.

Dear Mr. DeBord,
On August 4, 1955, our second child was born in Lancaster General Hospital. A little girl, she weighedijn at 5 pounds, 4 ounces, and was healthy. However, by the one month check-up, our doctor had some questions about her neck and hip, and he sent us to see Dr. Goodman, an orthopedic physician in Lancaster.

Dr. Goodman diagnosed a congenital dislocation of the left hip, early club foot, and a wry neck. She was to wear a bar 24 hours a day to separate her legs and straighten her legs while her body grew a hip. He assured us that with lots of therapy our little (daughter’s name withheld for privacy) would be normal. He explained that help was available at the Crippled Children’s Society, which was then in Rossmere, and referred us to Miss (Edna) Schreiber. That was the beginning of our daughter’s healing.

We did her exercises daily, and a neighbor came up to help me to hold her down on the table while I gently pulled her neck and twisted the muscles. Miss Schreiber’s assuring words, “Do this religiously, and she will get better,” were the commands that carried us on as (the daughter) began to improve. Miss Schreiber saw us regularly, and we do not remember ever being charged for the service.

Our daughter was a competitive swimmer in her teens, and is now a registered pharmacist working in Lancaster. She lives in Lancaster with her husband. They have two children and one grandson. She has been able to live a normal life and seems free of any complications of the hip.

We have tried to support the Society’s fundraising campaigns, because we have been extremely thankful for all you did for us then. The news in today’s Lancaster paper caused us to think how we were aided then and how you continue to help people. We want to help now. Our check for $1,000 is enclosed.

Here’s another one, sent in just last month.

To everyone at Schreiber,

Thank you, thank you, thank you! This note is a long time coming, but very well owed.

Our only child, (name withheld for privacy), who is now almost 17, was born 61/2 weeks early back in 1998. She weighed 4 pounds, 4 ounces, came home from the NICU at 11 days old at exactly 4 pounds, and started with Early Intervention the next day or so.

When she turned 1 is when Schreiber took over. If Mari Cunningham is still with Schreiber, please let her know that we truly do appreciate and will never forget what she did for us as far as helping our daughter. Today, she is a beautiful, healthy young lady getting ready to start her senior year of high school. She’s an A-B student who makes the honor roll every marking period. She plays tennis, does track, plays softball, plays lacrosse and loves every minute of it.

So, again, we say thank you to all of the therapists for doing what they do every day. It truly does make a difference. Thank you to everyone else at Schreiber as well. We wish we could give more, but, unfortunately, right now that’s not possible. Some day it will be though, at least we hope.

Thanks so much again, and keep up the good work!

And sometimes, the notes are shorter. We received this one in June after Schreiber President James DeBord visited Schaffer Elementary School to accept the money raised by students in Laurie Fellenbaum’s second-grade class.

Thank you! Schreiber is COOL!

So to those second graders, to the proud parents of a teenager, and to the folks we helped 60 years ago who all find it in their hearts to remember us and support us, we can only say:

No, really. Thank you.

Duckie sales start this week

DuckiePalooza Weekend

Schreiberpalooza is the music festival we’ve been doing in September for several years. Once we moved the Rubber Duckie Race date to September, it only made sense to put them together. For the first time, we will offer DuckiePalooza Weekend, Sept. 12-13.
So, to summarize:
Rubber Duckie Race + Schreiberpalooza = a great late-summer weekend of fun for all ages.

Schreiber Night at the Barnstormers

This Friday, July 3, will be Schreiber Night at Clipper Magazine Stadium. Join us for the big party we’re throwing to mark the start of Duckie ticket sales. Before the game starts, Schreiber kiddoes and their parents can join players on the field for what should be a moving version of “The Star-Spangled Banner.” Contact Dan Fink in the Fund Development Office if you’re interested. After the game, we’ll have a spectacular helicopter drop of 750 rubber ducks onto the stadium outfield, where three kiddie pools will serve as targets. Buy a ticket in the duck drop, and if you’re duck lands closest to the mark in the center of one of the pools, you could win one of the three awesome prizes we have lined up: a Weber Spirit grill (retails for $500), a 32-inch Samsung flatscreen TV (retails for $250) or a family fun amusement park package. And remember: Use the ‘duck15’ promo code when you buy your tickets, and $4 from each ticket sold comes to Schreiber.

New ducks, part 1: Debut of the specialty ducks

For the first time, we will sell tickets for 5,000 blue specialty ducks — at $20 per ticket — you will have a chance to win one of 10 premium prizes. So while our traditional race will have the usual array of fun prizes, this specialty duck race offers a chance at a Weber Genesis 330 copper grill (retails $850), Sharp a 43-inch flatscreen (retails for $400) and other great items. So while you’re picking out your Quack Packs and your Daffy Dozens, pick up a specialty duck or two, and you could win the TV or the grill.

New ducks, part 2: Out with the old racing ducks, in with the new

After years of bouncing down the Conestoga River, our trusty old racing ducks were showing their age. Thanks to a generous donation from LCBC, we were able to buy 25,000 new ducks — 20,000 of our traditional racing ducks and 5,000 specialty ducks.

Play Where’s the Duckie

on Facebook

Every Monday, we post a photo of one of our Rubber Duckies at a Lancaster County landmark on our Facebook page. So far, he’s been spotted at Park City, Long’s Park, Clipper Stadium and a bunch of other well-known Lancaster County locations. Keep visiting our Facebook page for the latest Duckie photo, make your guess and tag three friends to get them to guess. Each weekly winner receives four tickets to Schreiberpalooza Sept. 12 and will be entered into a drawing for a $50 restaurant gift card. And please consider making a $9.13 Where’s the Duckie donation to Schreiber, and encourage your friends to do the same. Every dollar we raise through the Rubber Duckie Race and all of our special events helps us provide services to nearly 4,000 children, regardless of need or ability to pay.

Skipping like the wind

Remy has cerebral palsy, a disorder that’s the result of damage to the developing brain. It’s one of the more common causes of chronic childhood disability: About 10,000 infants in the U.S. are diagnosed with it each year, according to WebMD.

The condition affects the left side of Remy’s body, and she wears a brace on her left leg to prevent her achilles tendon from tightening, said Schreiber physical therapist Diane Weis.

Heather Colosi, Remy’s mom, had been taking Remy to a traditional physical therapist — one who treats mostly adults — with little to show for it.

“We went for a year and didn’t see any progress,” Heather says. “Finally, I got fed up.”

They started at Schreiber in August, and Heather could see a difference immediately.

“The other place wasn’t focused on children,” she says. “Here, they have the bright colors and the toys and games. It makes it more enjoyable.”

And Remy’s mobility improved, too. But Mom thought Remy would benefit from a little extra motivation. When she saw the Fulton Theatre would be presenting “The Wizard of Oz” this summer, she talked with Remy about trying out.

“My mom asked me if I wanted to do it, and I said, ‘Yeah,'” Remy says.

To be a Munchkin, though, Remy had to learn to skip. And as her therapist says: “Skipping was not in her wheelhouse.”

Diane’s work with Remy has focused on strengthening Remy’s left leg and improving her one-foot balance. Remy has gradually learned to step up on increasingly higher steps. She does a lot of climbing.

Skipping required a little extra work. Diane added some new strengthening and stretching, and she walked Remy through the step-hop pattern. And Remy practiced skipping. Over and over and over. One week before her audition in May, she had it down.

“When she finally got it, she was so excited,” Heather says. “You could see the lightbulb go off. She said, ‘I got it. I understand it. I can do it.'”

On Thursday, she will put her new skipping skills to work — for opening night at the Fulton. If you see a Munchkin with a little extra determination in her eye and a little more joy in her step, that’s probably Remy, following a Yellow Brick Road to her own version of Oz.