Speech therapy

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.

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.

My Story: Jana Kuhns

My name is Jana Kuhns, and I am 15 years old. I received my injuries from a car accident. My parents and my younger sister Jennie were in the accident as well, but my sister Jennie went to be with Jesus.

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.

***
Jana couldn’t talk for the first two months after the accident. It took another month to be able to get around without a wheelchair. She has made huge improvements since then, but the effects of her injuries linger. The damage to the left side of her brain has left her with limited function on the right side of her body.

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.

***
When I started at Schreiber, I couldn’t do anything to help at home. Now, with my spare time, I wash dishes, read books, clean and sometimes cook.

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.

Matt Woods: Training with a purpose

Matt grew up in a family that played sports. It seemed there was always a game of football or basketball going on. He ended up getting into competitive swimming as a coach. He’s now the swim coach at his former high school, Cocalico.

After he graduated from LVC in 2007, one of his swimming buddies talked him into trying a sprint triathlon in Harrisburg. That led to his first Ironman-style triathlon last year in Atlantic City, N.J., the Challenge Atlantic City. A triathlon requires competitors to swim 2.4 miles, bike 112 miles and run a full 26.2-mile marathon, all in one day. That might seem a little daunting to most people (to say the least). But Matt was already hooked.

“I like the community in triathlons,” Matt said. “There’s definitely competition and pushing yourself. But at the same time people pull for each other, you have volunteers helping you. It’s definitely a different type vibe.”

He managed to finish last year, and after the race he and his wife Katie, a Schreiber speech therapist, talked about whether to do it again this year. He said he had noticed a lot of the athletes use their racing to raise awareness or raise money for various things.

“I said if I did it again, I’d want to do something to raise money,” Matt said. “Eventually, I thought it would be a great idea to do something for Schreiber. I know a lot about it through Katie. I knew about all the great work with kids that happens there. Everyone I’ve ever talked to about (Schreiber) had nothing but great things to say. So I thought I could try to raise some money and, if nothing else, raise awareness.”

And having a cause to support also helps stay motivated on those I’m-not-sure-if-I-can-do-this days.

“Absolutely, it helps,” he said. “People contacting me and saying really nice things about Schreiber and about me gives you a definite boost and motivates you and reminds you that what you’re doing makes a difference or helps the cause in some small way.”

Matt is halfway to his goal of raising $3,000. To join Matt’s team and donate to his Tri Schreiber fundraising page, go to: https://www.crowdrise.com/trischreiber/.

Gone buggie

Consider the case of little Elaina Sauder. Pink pants and a matching pink ribbon in her red hair. A happy, giggling little 5-year-old.

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.

1. Listen to the child to identify what exactly the anxiety is. Is it about crawling or flying insects in general? Or is there a particular insect that is upsetting? Once you narrow down the issue, begin to work through it.

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.

Happy birthday, Ben McRee


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.

***
Kathy said Ben spent about nine years coming here for therapy, then worked with learning support specialists from the Lancaster-Lebanon Intermediate Unit through middle school and into high school in the Manheim Township School District.

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.

***
It’s an emotional time for Ben’s parents, too. He leaves high school in June with a future that will be different from the familiar environment of school. Kathy said they have a Person/Family Directed Support Waiver from the state that will provide money for job training at Goodwill and to attend United Disabilities Services’ adult enrichment program. Eventually, they hope to get him into his own supported apartment in a group home.

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.”

An aspiring actor with Down syndrome

***
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.

THON starts today at Penn State

Some of the kids receive treatments that can have devastating physical side effects. And Schreiber is one of the pediatric therapy centers that provides services to help these kids recover.

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.

2015 Ambassadors: Sienna Matthews and Anthony Melendez

Sienna Matthews

Age: 4
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

Age: 4
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.

Meet the 2015 Ambassadors: Alex Johanning

Alexander Johanning

Age: 8
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.