Miles eventually received occupational and speech therapy, along with continuing his PT. He was with Jay Graver in preschool for two years, and he was joined the second year by his younger brother Levi.
“Miles was here three times a week for preschool and therapy, Levi was here twice a week,” said Dani, who lives in West Lampeter Township with her husband, David, and the boys. “We were coming every day for that year.”
“When we were looking around for preschools for Miles, I liked the emphasis here on diversity and that there are children of all abilities,” said Dani, who has an associate degree from Harrisburg Area Community College in early childhood education. “I liked it so much I’ve sent all my boys here.”
Well, almost all. The youngest, Asher, is only 4 months old. He comes along when Mom drops off Levi and Isaac, so he’s getting to know Schreiber, too. Even if it’s only as the place where he gets his morning feeding and a nap.
Soon enough, though, Mr. Jay can probably expect to see the fourth Brenneman boy come through.
The book took about six months to produce, start to finish. The basic idea came out much more quickly, during a therapy visit in November. Harper was a toe walker. After about a year and a half of physical therapy, including a combination of bracing, casting and gait training, she is almost completely free of the toe walking.
“I was here with Harper for PT,” Randall said. “I had brought my notebook, and I just wrote a couple things down. It came out in about a half-hour. I kind of based it on her and her sister (Elle, who is 3) and how they get when they’re hungry and tired. The idea I had was a GrumpaSaurus.”
All the parents reading this are nodding their heads right now. Hungry and tired, GrumpaSaurus — sounds right.
“You used to be pleasant and sweet to all of us,
But now you’ve turned into a huge GrumpaSaurus.
You yell and you scream for no reason at all.
Then smash your block buildings with your favorite ball.”
Later in the book, Randall conjures up more scary creatures, including a GrumpLope, a GrumpaPotamus and even a dreaded StinkaLinka. Jaci Rice’s illustrations, simple and watercolor-ish, creatively complement Randall’s wordplay. Jaci is Randall’s sister-in-law; her sister Leah is married to Randall.
“(Jaci) is an artist,” Randall said. “She always wanted to do a children’s book, but she never had an idea. I gave her the words I had, broken down into pages where an image could go. She took a couple months to come up with the pictures.”
This is Randall’s third book. His first was a nonfiction book about his great-grandfather’s experience in World War I called “My Life in the U.S. Navy.” He also wrote a young-adult book called “Elijah B: The Treasure of Morgan Malone.”
“He’s always told me he likes writing,” Leah said. “With his military background and the first book, this is a 180 from what you would assume he would want to do. But we had these two little girls, so he has all kinds of inspiration. It’s really just to help them take care of themselves: Eat a snack, take a nap and you won’t turn into a scary monster.”
He was happy to spend some of it coming to Schreiber for the reading to a bunch of preschoolers. From the way the kids settled in with their own individual copies of the book – each copy signed – it looked like they were happy, too.
Help us provide therapy and educational services for children like Harper. Visit our DonateNow page here and set up a recurring gift. Your $10 monthly gift will pay for one half-hour of therapy or two weeks of preschool. Questions? Call the Financial Development Office at 717-393-0425 ext. 105.
Steve is the primary caregiver during the week, so he’s the one we usually see here at Schreiber with Shelby. In his part-time work from home, he’s an environmental and policy consultant for nonprofit advocacy groups. Mom Judie Howrylak is a physician and medical researcher at Penn State Health Milton S. Hershey Medical Center. They live in Manheim Township.
Steve said Shelby has been back and forth to Children’s Hospital of Philadelphia several times to treat the severe epilepsy, most recently in early 2017.
“She had a very rough patch the past two months, but she seems to be recovering,” Steve said in early May. “She’s actually this sweet, very resilient warrior princess. It’s amazing how strong she is. I think that’s what makes her captivating to people.”
In that time, Shelby has seen seven different therapists, both for home visits and here at the Center. Steve has been consistently impressed with all the therapists and their care.
“We’ve been very fortunate to get several pieces of home medical equipment, some of them very expensive. Kristie Schreoder took the lead in writing the order so that it could be paid for by insurance. It’s not always easy to make that happen. You need a lot of competence and experience, which Kristie obviously has.”
With all her different issues, improvement can be hard to see, let alone measure.
“We have goals and look for progress, but sometimes circumstances change when she has a setback,” Steve said. Before her most recent setback, he said, “She was very close to being able to pull herself up into a sit. Now we’re trying to rebuild her arm and leg strength.”
He keeps his eye on the big picture, which he said is to maximize her developmental potential. What that means exactly nobody really knows.
“The life expectancy for what Shelby has is eight years,” he said. “We’re hoping to do everything we can to push the envelope as much as possible. There’s a girl in Australia with Aicardi who sings and walks. The oldest surving person has lived to be in her 30s. We’re hoping with improvements in drugs and treatment that Shelby can push those boundaries.”
That might seem like a steep hill or long odds or whatever metaphor you might choose. Steve picked a different one as he watched Shelby prepare for another round of core work on a big blue exercise ball.
“We tend to see the glass half full.”
Does Shelby touch your heart? Should every child who needs our services be able to receive them? You can help make that happen. Just visit our DonateNow page here and set up a recurring gift. Just $10 a month will pay for one half-hour of therapy for one child like Shelby. Questions? Call the Financial Development Office at 717-393-0425 ext. 105.
Let’s start with our new camps.
First, we’re offering two handwriting camps. Ready to Write is aimed at younger kids, ages 41/2 to 6 (entering preschool or kindergarten). This camp develops readiness skills for writing with focus on motor and perceptual skills required for writing fluency.
The Write Stuff is for 6-8 year olds (enterting first through third grade) who have already learned letter and number recognition and printing but need some extra practice. Focus is on foundational skills of posture, fine motor control and visual-motor skills.
Both camps will be led by a licensed occupational therapist, and the emphasis will be on fun. All campers will receive their own handwriting kit.
Handwriting camps will run twice a week (Mondays and Wednesdays) for six weeks starting July 10. For more information on times, dates and prices, visit our summer camps page here.
The other new offering will be our Sensory Explorer Camp. This camps will offer young children a broad range of therapeutic activities that involve sensory play and social skills development. It is open to all children of all abilities. Activities will include: water play, arts and crafts, outdoor games, music and nature hikes.
This camp will serve kids ages 4-7, and you can pick from a morning or afternoon session. The Sensory Explorer Camp will run Aug. 7-10. For details, visit the summer camps page here.
And don’t forget about our flagship camp, Camp Schreiber. In its 21st year, Camp Schreiber offers the classic week-long summer camp experience for kids and youth ages 8 to 21. Weekly sessions start June 26 and continue through the week of July 24, including an abbreviated camp week on July 5-6.
Finally, for teens we have our Club 625 Camp, the summertime version of our Club 625 outings. Young people can reconnect with old friends and meet new ones during our camp weeks in the first two weeks of August. This program offers fun on-site activities, as well as opportunities to work on social skills during outings in the community.
To register for any of our camps, visit our registration page here.
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.
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.”
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.
He received therapy, attended preschool (and worked with Jay Graver, Mr. Jay, the current preschool and camp director) and spent many summers at Church of the Apostles for camp.
“So many memories coming in here,” Justin said, looking around the church’s gym. “It’s so big, and we had so much fun. It was a great way to socialize and make friends. I still have friends that I made here at camp and preschool.”
Justin returned as part of his job. He’s an administrative officer at the Pennsylvania Human Relations Commission. The main part of his work involves going to schools, libraries, camps and other children’s groups to read “The Fair Housing Five,” a kids book about fair housing agencies.
“My experience at Schreiber taught me: There are no limits,” Justin said. “Schreiber was always very encouraging. The message was: You can do whatever you think you can do, you just do it differently. It was never about what you can’t do. Always what you can do.”
The June Smith Center recommended that the Robles bring Sophia to Schreiber Pediatric for more intense therapy.
At Schreiber, Sophia grew socially, as well as physically.
“When we first came to Schreiber, she wouldn’t go near people,” her mother said. “She would start screaming and wouldn’t leave my side.”
As Sophia became comfortable with the surroundings at the Center, she started to relax and open up. Now she responds with a sweet engaging smile to those who talk with her.
Physical therapy was also a challenge at first.
“I tried to stay with her during the therapy sessions,” Her mother recalled, “but she was resisting and crying out for me, and it was too hard for me to be in there. I had to step out of that situation.”
Malexi began waiting outside the therapy room. When Sophia was alone with the therapist, she started to listen and began making progress. But her limited range of movement presented challenges.
Unusual surgery leads to breakthrough
After evaluating Sophia’s condition, an orthopedic doctor recommended she undergo an operation that would release her tight tendons. It was a surgery that is usually not recommended for children under age 7 because it may need to be repeated later in life. However, in Sophia’s case, a CT scan revealed that her hips were so restricted that they would likely become dislocated if she didn’t have the surgery sooner. So, at the age of 4, Sophia underwent the operation, which required her to be in a cast from the waist down for six weeks.
Before the operation, Sophia’s mother had trouble changing her diaper because she couldn’t bend her legs. After surgery, the cast continued to make diaper changes difficult. But, when the cast was removed, both Malexi and Sophia were overwhelmed by its success.
“I heard her saying ‘open…close’ over and over,” Malexi recalled. “She was laying on the bed, saying ‘open, close’ as she moved her legs back and forth for the first time.”
Sophia started light therapy, which became more intense as her body healed. The therapist was able to teach Malexi how to do the exercises with her at home. With the help of therapy, Sophia increased her mobility, and in one year was walking without the assistance of a walker.
Sophia’s success opened the door to a lot of changes for her and her family. When she came to Schreiber she could barely sit down.
“She was not flexible at all. Her posture was hunched and her legs wouldn’t straighten when she sat down. They were bent when she stood, also,” Malexi said. “Now she is walking, and she can bend down to pick up something from the floor, and she is running. So she has done a complete 360.”
Although she runs with some difficulty, it is a treasure to see Sophia’s joyful strides down the hall outside the physical therapy room at Schreiber. She will continue to improve both physically and socially, and can look forward to a promising future.
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.”
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.
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.