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.
They have been truly instrumental in his progress over these nine years. We would not be where we are today if Schreiber wasn’t part of our lives. They do change lives. Schreiber provides cccupational therapy, speech therapy and physical therapy to more than 4,000 children annually who have special needs. Chris’ therapists have been amazing at helping him learn to tie his shoes or write with a pencil. All of these tasks are easy for most of us but not for many of the children being served by Schreiber. They are dedicated to helping children.
On a recent Friday at Schreiber, I watched Chris draw a perfect dog on an art wall at the center. They know how to motivate Chris to do difficult tasks. We are truly blessed by Schreiber.
The Martin family was blessed to begin receiving services at the Center for Autism and Developmental Disabilities (CADD) for Chris to help him with social skills and how to handle social situations at school and home. This has been an amazing organization for Chris when it comes to learning appropriate things to say and not to say. We have a long road ahead of us, but Chris talks weekly with other kids who struggle with social skills and he LOVES going. This social skills class is facilitated by his amazing child therapist, Colette. She helps direct the group, teaching the boys in the group how to behave, react, even engage in things as simple as a game of Lego’s.
She also works with Chris one on one to help with things that Chris struggles with, like how to show frustration or anger. This program is really amazing because they are a full-service support center for children and adults with autism. We are blessed with CADD because as Chris grows, the services and programs they provide will grow with him. That is very RARE!
Last year, with your help, the Martin Family raised $3,000 for Schreiber. Can you help us again? Would you help us support Schreiber, CADD or both?
We need your help! If you want to contribute, you can mail a check to me payable to Schreiber Pediatrics or CADD. Any amount can help. Put “Chris Martin Fundraiser” in the memo section.
If that is too much and you want a faster way – you can log on to this link – https://www.schreiberpediatric.org/donate/ – and make sure you note “pledges for Chris Martin for Softball” in the Dedication section. It would help if you let me know that you gave so I can make sure it is counted for Chris’ game.
Or you can go to https://www.philhaven.org/ProgramsandServices/CenterforAutismandDevelopmentalDisabilities.aspx
and make your donation to Pilhaven. Please make sure that in the note section that it states this is for Chris Martin’s fundraising project for CADD.
We appreciate any support you can provide. These two organizations have made a huge improvement in Chris’ life and ours, and we are just one family; they both serve thousands of families in the same situation. Check out both organizations to learn more and spread the word about them.
The Martin family thanks you!
Schreiber’s 33rd Annual Softball Weekend starts Friday, June 5, and runs through Sunday at Froelich Park in Mountville. Registration deadline for Marathon Play is Thursday, June 4, and there are a few slots left (register online here). Thanks to our presenting sponsors Fraternal Order of Police Red Rose Lodge #16 and Lancaster Toyota. This year’s other sponsors include Abram Subcontracting, E&E Metal Fab. Inc. and Integrity Pools and Spas, with FM97 our exclusive media sponsor for the weekend. And special thanks to our other supporting businesses: B&T Sportswear, Manheim Sertoma, Crystal Springs, Family Owned Markets, Gayle Kline RV Center Inc., Herr Foods Inc., Kunzler & Company Inc., Pepperidge Farm, Pepsi Beverages, Turkey Hill Dairy, Weis Markets and Y&S Candies.
The night of the accident I was taken to Lancaster General Hospital then transferred to Hershey Medical Center right away because Lancaster General doesn’t accept trauma pediatric patients. I was in Hershey’s pediatric intensive care unit for 18 days with many differnt injuries, including a severe brain injury. Then spent 3 months and 3 days in the Lancaster Rehab Hospital.
I am told I had a breathing tube and a brain probe, and they also had me on life support at Hershey. But I don’t remember any of that.
The day of Jennie’s viewing they removed my breathing tube.
I don’t remember the first two months, but I remember the big events. My nurses, techs and therapists sang “You are my sunshine.” I remember being sung to, but I don’t remember when.
I had no physical abilities because my left side was stiff, and my right side was curled. But now my left side is my good side, my right side doesn’t work. I also had a fractured jaw and pelvis, but I don’t remember any pain. I am told I had a feeding tube as well. I wasn’t responsive in Hershey or when I first came to the rehab hospital.
She started coming to Schreiber for therapy in July, about four months after the crash. She comes three times a week: for physical therapy (each visit), occupational therapy (twice a week) and speech therapy (once a week).
The physical therapy is the most arduous. PTs Laurie Miller and Lisa Stachler Volk are working to restore strength and range of motion to Jana’s right arm and leg. For the ankle and foot, Lisa and Laurie are using a therapy technique called serial casting. Because of the brain injury, Jana’s foot became locked in a flexed position. The muscles were stuck.
With serial casting, Jana’s doctor injected the muscles in her lower leg and foot with Botox to temporarily shut down and relax the muscles. Then Laurie and Lisa put her foot and ankle in a series of casts that will gradually allow her foot to be moved back toward the correct position. Each week, they take the old cast off, adjust the ankle position and put a new cast on. Each week is a little more progress toward normal.
I hate it when Lisa and Laurie put a cast on my leg and ask me not to talk, but I know what they’re doing is going to help me in the long run. Also, I love asking almost everyone to sign my cast, and I understand why they’re asking me, so that helps me to stand it.
I love it when Laurie does the exercise that helps me hold my shoulder back when I’m walking, because I just lay on the table and roll this way and that. I love it when Lisa has me do wall pushups because that’s making my left arm stronger. I love it when Isaak (Schreiber OT Isaak Ross) has me cooking because I’m doing something that will help me at home.
Jana’s mother RoseAnn didn’t know exactly what to expect when she started bringing Jana to Schreiber. She saw the progress in the first four months – learning to talk and walk again – and thought she had come a long way pretty quickly.
“I think I thought she’d get back to normal,” she says. “The more I learn about brain injuries, the more I know that ‘normal’ might take a long time, if ever. Jana has a new normal.”
The new Jana is a chatty, cheerful teenager who teases her therapists while taking some teasing from her little sister Jenessa. The new Jana shows no signs of any woe-is-me wallowing. The new Jana is a smart girl with lots of support from her family, her faith and her friends at Schreiber.
Except where bugs are concerned.
She’s on the autism spectrum with lots of sensory-processing issues. Her mom Joslyn says Elaina has been coming to Schreiber for occupational, physical and speech therapy for about two-and-a-half years. Show her a plastic container with some planting soil and earthworms, and she will pull away like there’s a spider in front of her.
“She’s afraid to go outside,” Joslyn says.
We hear similar versions of this story from the parents of the children they treat each spring through the summer. There are strategies occupational therapists and parents can use to help kids be more comfortable playing among the bugs and dirt.
2. Educate inside the house. We begin with non-threatening bug games like “Spin the Beetle” (Milton Bradley), “Up the Water Spout, a Spider Racing Game” (International Playthings), “Squiggly Worms” (Pressman), and move on to “Cootie” (Milton Bradley). The games are modified depending on the age level. For example, “Cootie” can be played with spelling words or math problems for elementary children.
3. Progress to more vivid illustrations of insects. The children design their own bugs using multiple media, including colored pencils or molding clay. And parents can use electronic games such as “Bugs N Buttons” (little bit studio, 2014) and “Bugs N Bubbles” (little bit studio, 2012) that have lifelike graphics.
4. Have the child build stories. Social sensory stories are written specific to the child with photos or pictures included. I work with Elaina to have her draw pictures in response to a series of prompts about what she can find outside. The combination of the prompts and the pictures helps Elaina create an Elaina book about things outside her house, starting with everyday objects she’s comfortable with (like grass and dogs and cars), then working gradually up to bugs. So one prompt and picture — “Dogs and cats like to play with people. Bugs are afraid of people” — leads to the next — “Because people are big, and bugs are small.”
5. Shift their focus. Sometimes, you can redirect a child’s attention to a goal-specific task, such as a treasure hunt. Praise every success, even if it’s just taking one step out the door. The next time hide more treasures.
These are just some of the steps that our OT’s have used successfully to desensitize children who fear bugs and won’t go outside. At Schreiber, we customize our treatment, so that each child has a specific program to suit their goals.
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.
Ben was born with an intellectual disability and developed Attention Deficit Hyperactivity Disorder, or ADHD. His mom, Kathy Trippe-McRee, brought him to Schreiber for help with his speech and his fine and gross motor skills.
He started learning sign language when he was 3.
“The first thing he ever signed was ‘reindeer’,” Kathy said. “It was a reindeer at Stauffer’s (of Kissel Hill), around Christmas time. He pointed at it and signed. … It was clear he understood what we were saying, but that’s when we knew he’d be able to express himself.”
Within a couple of months, he was talking. And the joke now is he hasn’t stopped.
He’s come back to Schreiber for the past three years to improve his attention and some of his fine motor skills. Therapist Kristen Schreiber used the pretense of a final therapy day to get him back to the center one last time.
More than a dozen Schreiber staffers turned out for the birthday celebration and to grab some cake (chocolate chip cookie) and ice cream (vanilla). Ben was amazed at how many people signed his card. “Mom, look at this,” he said, showing her the back of the card packed with signatures.
He became a little emotional while the group serenaded him with “Happy Birthday,” briefly turning toward his mom and hiding his face.
There’s a waiting list for the apartments, so for now he will stay at home. And Kathy will grin and bear those times when he doesn’t want to listen to Mom and Dad anymore.
Those moments of young-adult rebellion don’t define him, though. He’s too good a person. Always ready with a smile and a hello.
During the birthday gathering, Schreiber President and Friend of Ben James DeBord told a story from this past December. James and his youngest son Matthew went with Ben to Park City Center to do some holiday shopping.
“If you ever want to feel like the most popular guy in the room, hang out with Ben for awhile,” James said. “We couldn’t go anywhere in the mall without people yelling out, ‘Hey, Ben,’ ‘How’s it going, Ben.’ And not Schreiber people either.
“There are some people in life that just make you smile. Ben is one of those people.”
Inside one of the Fulton’s classrooms, Alex is one of a half-dozen or so kids seated around a circle on small carpet squares. Teacher Amy Kaye Mullen runs the kids through a series of acting exercises.
When it’s time to be a fish or an alligator, he jumps right in. When it’s his turn in a role-playing exercise, he grasps the idea and gives it his best shot. No big deal.
This is what he wants to do, Lisa says.
“He doesn’t really play with toys much,” she says. “He’s very imaginative and does a lot of acting in his play. We’ll watch a movie, and he’ll say the lines and act it out right along with the movie.”
She saw the Fulton was offering acting classes, so she called Jennifer Ridgway, the Fulton’s director of community engagement. Lisa told her about Alex, and Jennifer said to come in for a meeting.
“We took him in, and it was like a little audition,” she says. “(She tells Alex), ‘Can you be a fish.’ So he did a couple fish things” — and Lisa points her hands in front of her to mimic swimming — “and she says, ‘See you next Saturday.'”
Having kids like Alex in the Fulton’s acting classes is part of the theater’s effort to provide inclusive experiences for the community, Ridgway says. It’s the same thinking that prompted the Fulton to partner with Schreiber in offering sensory-friendly programming.
In the past year, it added Sugey Cruz-Everts from the Tommy Foundation to its Community Engagement Advisory Board. The Tommy Foundation is a nonprofit that provides support for families with an autistic child.
That could lead to new programs to serve the autism community, Ridgway says.
For the Johannings, an acting class is more than just a fun activity for Saturday mornings. They drop off and leave, which they had never done before (Mom was a little nervous). And maybe more importantly, the classes support their strategies to continue his social and emotional development.
“He learns to follow the rules of the session: We greet our friends; we listen to the teacher; we follow directions,” she says.
Like a lot of parents of children with special needs, Lisa worries about how he would make friends and whether kids would be mean.
For her, having Alex in acting classes with typical kids and mainstreaming him in public school have helped break down the obstacles that might otherwise have existed in his efforts to socialize.
“When we were in school, kids like Alex were in special ed,” she says. “We didn’t see them. (Alex) is making friends here and in school. He’s growing up with them. He’s just one of the kids.”
Feeling like he’s just one of the kids will make a huge difference as he grows into adulthood and starts chasing that acting dream.
And that is a big deal.
A child who receives treatment for a brain tumor might need to relearn how to walk or talk, or they might acquire cognitive impairments or learning disabilities. They might have poor hand-eye coordination or behavior problems.
Schreiber therapists see these issues every day. We know the toll that cancer can take on little ones. We say a heartfelt thank you to all those involved with THON through the years, especially the Penn State students past and present, who have helped raise money and awareness in the fight against pediatric cancer.
Because while we’re in a position to help these kids today, we would be thrilled if somebody found a cure for childhood cancers tomorrow.
So, Penn State students, please keep up this fight.
School: Circle of Friends Academy Daycare
Parents: Ashley Shank and Cord Matthews, Lititz
Favorite foods: spaghetti and pizza
Favorite activities: therapeutic riding, dancing and playing with Play-Doh
SiSi has been coming to Schreiber since she was 18 months old. Her mom Ashley says SiSi was diagnosed with symptoms related to cerebellar ataxia syndrome. People with this diagnosis might show several of a broad array of symptoms, all of which are tied to abnormalities in the cerebellum, an area of the brain generally associated with motor skills. SiSi came to Schreiber to improve her balance and coordination, her leg and core strength, the clarity of her speech and her hand-eye coordination.
To work on all that, SiSi receives physical, occupational and speech therapy. Ashley says SiSi couldn’t walk when she started at Schreiber.
“Now, she can run, something we’d never thought would do,” she says.
In addition to therapy, SiSi attends the Circle of Friends Academy early learning center, attended by kids with challenges and their typically developing peers.
Through it all, SiSi keeps improving.
“I am so thankful for the Schreiber Pediatric community, and so is (SiSi),” Ashley says. “She loves going to Schreiber every day. I know the best choice I ever made for my child was sending her to Schreiber.”
Anthony I. Melendez
School: Preschool at Schreiber Pediatric
Parents: Jennifer L. Melendez, Lancaster, and Peter I. Melendez (deceased)
Favorite activities: He loves to color, practice writing his letter — anything that has to do with colors, shapes and letters.
What he watches: “Kipper the Dog,” “Pocoyo,” “Finding Nemo.”
Anthony Melendez has had a pretty tough time in his 4-1/2 years. He was born with several serious medical issues. He is still battling a hearing loss in one ear, a feeding disorder, low muscle tone and chronic lung disease. And he has speech and language delays.
On top of that, the family lost Anthony’s dad Peter following a terminal illness when Anthony was 3.
Anthony doesn’t let any of that stop him from being at therapy twice a week. He works on sounding out words. He works on strengthening his core and learning to hold a pencil correctly or use scissors.
And he has a ways to go to overcome his food aversion; he still has a gastronomy tube to make sure he’s getting the nutrients he needs.
“Anthony has come so far and continues to amaze me,” his mom Jennifer says. “His vocabulary is so much better. He has much more confidence in himself. He is running around with his friends and jumping on the bed like a typical 4-year-old.”
He certainly ran around like a typical 4-year-old during the photo shoot here, and he was a little wiggly for the photographer. It didn’t faze Jennifer, who has certainly had far worse to handle during the past few years.
“I have no doubt that he can accomplish anything and everything he wants,” she says.
Grade and school: 2nd grade, Lampeter Elementary
Parents: Lisa and Tim Johanning, Lancaster
What he watches: “Sophia the First,” “Beauty and the Beast”
When he grows up he wants to: Be an actor.
Alex was born with Down syndrome, a genetic chromasomal disorder that causes intellectual disabilities and developmental delays. He started coming to Schreiber at a young age, and he receives occupational and speech therapy to help him speak more clearly (he loves to talk) and to improve his physical strength and stamina. He’s also working on some of his fine motor skills.
His parents provided a list of goals and strategies – four pages worth – that they wanted Alex to aim for in 2014. They also keep him busy with Cub Scouts and acting classes at the Fulton Theatre.
OT Kim Martin and speech therapist Abby Zell noticed the parental support.
His family has always had high aspirations and goals for him, and they see Alex being successful in his various activities.
“He is also an example of how his hard work is paying off,” they wrote.
Emily Nicole Graver
Grade and school: 7th grade, Marticville Middle School
Parents: Tim and Kerry Graver, Holtwood
What she watches and listens to: “Duck Dynasty,” “Sponge Bob,” “The Croods” and Taylor Swift
When she grows up she wants to: Be a veteranarian.
Emily started coming to Schreiber after surgery in December 2012 to remove part of her brain. “The left side of my brain,” she wrote in her paperwork. “To control my seizures.”
Doctors and therapists call this a hemispherectomy, and it was done to treat Rasmussen’s syndrome, an inflammation of the brain that causes uncontrollable seizures. With part of the left side of her brain gone, Emily had to regain the use of her right arm, hand and leg. She had to learn to walk and talk again.
And she’s doing it.
She can walk without a walker or a cane. She can go up and down stairs – “sometimes without holding onto the rail,” she wrote. She can speak more clearly.
Her parents, Tim and Kerry, describe her as outgoing, caring and kind. And, they said, she still gets excited about coming to therapy.
“Emily is a walking, talking miracle,” wrote Laurie Miller, her Schreiber physical therapist, in her nomination form. “After being told she would never would walk again, Emily decided she was going to prove everybody wrong. She is a very spunky, hard-working and persistent kiddo who has found a way to overcome every challenge. She loves to sing and perform and has a wonderful and inspirational zest for life. We have fun every week, and it has been a blessing to watch Emily progress from using a walker to doing ‘high knees’ in the pool. She demonstrates what we strive to do here at Schreiber every day – ‘turn disabilities into abilities.'”