Families

Shorter wait times are a boost for Marin family

Velveth has two sons. The oldest, Luis, is 10. Velveth, answering questions with the help of Susan Fisher, our translator, said she heard about Schreiber from her pediatrician after Luis was diagnosed with autism when he was 3.

It took three years from the time she was referred until Luis was finally able to start receiving services in 2013. That’s how long the wait times were for speech therapy.

With her second son, Kevin, doctors detected hydrocephalus during the pregnancy, and he was born in 2013 with his own set of complications.

At 14 months old, when it was time for him to begin services at Schreiber, Velveth said Kevin was able to start almost immediately.

“Very different,” Velveth said. “I’ve told friends to come here for services, and they got right in, too.”

Whether the wait has been long or short, Velveth said the benefits of coming to Schreiber have been the same: amazing.

With Luis, at the time of his diagnosis at age 3, he was nonverbal. By the time he started at Schreiber, when he was 6, he still wasn’t speaking.

“‘Mama,’ ‘Dada,’ that was it,” Velveth said.

He started in Speech-Language Therapy with Barbara Miller — “Miss Barbara,” Velveth called her.

“She started working with him,” she said. “After two or three months, we could see he was paying attention and starting to understand directions. … Then he started saying things. Probably when he was 7, he was speaking.”

Luis is in fifth grade now, doing well in a classroom for students with autism.

“He’s a good kid,” Velveth said. “He’s learning to express himself. He gets along with other kids. He has started to draw and have an imagination. Miss Barbara is the angel that opened the door.”

Kevin has had a different path. His hydrocephaly caused complications that made it difficult to diagnose him. Eventually, he was diagnosed with Chiari malformations, a condition in which parts of the brain protrude into the spinal column and some of the nerve tissue that connects the two sides of his brain were missing.

“Doctors said he’d never walk or eat by himself,” Velveth said. “When we started here, he couldn’t sit. He would just lay in bed.”

He began his physical therapy at 14 months with Lisa Stachler Volk, who showed Velveth how to help Kevin sit and how to massage his legs to help improve his muscle tone. At 18 months, Kevin started to roll over. Then he was fitted with braces and started learning to stand.

He’s 4 now, and he walked from his stroller back to a recent therapy session with no assistance, although he still wears a brace to support his weaker left side. He also receives occupational therapy to reduce his anxiety about walking on different surfaces. His brain had difficulty processing going from grass to the mulch of a playground, for example.

“He used to cry and cry and wouldn’t do it,” she said. “Now he can do it. All these little things he’s doing, like going down a slide, they’re normal for other kids. They’re so amazing for us.”

She has seen him progress in other ways, too. He used to be anxious about different food textures and would only take liquids; now he’s learning to chew. He’s much calmer and more confident. He sleeps better.

All of which is to say: Schreiber and the Marin family found each other at the right time.

The Brenneman boys are all Schreiber boys

“I love it here,” Dani said. “It’s so good here. Everybody gets you. They understand what you’re going through. And everybody is so friendly and so accepting.”

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.”
Miles eventually graduated from preschool to start kindergarten. He’s 6 now. Levi and Isaac still attend Mr. Jay’s preschool.

“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 Extraordinary Give is coming

Step 1: Join us here at the Center on Thursday, Nov. 9, for Give Thanks for Schreiber Night. Starting at 5 p.m., we will have hundreds of luminaries set out around the outside of the campus. Inside, we’ll have a bunch of fun stuff planned, from crafts and games to face painting and pumpkin decorating. So stop by for some fall family fun, then take a moment to light a candle in honor of or in memory someone special with a connection to Schreiber. And we’ll have a special treat for you to take home with you, we promise.

UPDATE, 10/23: The first 500 visitors to light one of our luminaries will receive a free Stroopie from Lancaster Stroopies. If you haven’t had one of these, yet, don’t wait. Come to Schreiber on Nov. 9, light a candle and get a Stroopie.
Step 2: Mark your calendars for Friday, Nov. 17, and bookmark Schreiber’s donation page at www.extragive.org. Here’s our donation page. The giving starts at midnight, and the more donations we receive between midnight and 3 a.m., the better our chances for being at the top of the Extra Give leaderboard. And be ready to share your donation on social media (and tag us on Facebook and Twitter): Post about your gift with #helpschreiberkids, tag friends to encourage them to give, and Like and Comment when you see updates. And we’ll again be downtown on the day of the Give with our friends from FM97. In past years, you could find us at Lancaster Dispensing Co. With the fire there recently, we will be in a different spot (details to come!).

UPDATE, 10/12: We confirmed that we will have our Extra Give party at the Federal Taphouse, at the corner of Queen and Chestnut streets, and just two blocks from the big Extra Give party at Lancaster Marriott at Penn Square.

UPDATE, 10/19: We will be at the Federal Taphouse throughout the day on Nov. 17, starting when they open for lunch at 11:30 a.m. When you are out and about downtown that day, stop in for lunch, dinner or drinks, and take a minute to donate to Scheriber. FM97’s DC will be on hand to play music from noon to 6 p.m. If you come by after work, we’ll have live music by Jen and Brad Rhine from Blue Sky Falls from 6-7, followed by MOE Blues from 7:30-8:30.

UPDATE, 11/16: We gratefully acknowledge support from three companies providing Business Matches for this year’s Give: Atlee Hall, Mid-Atlantic ProTel and Medisys Solutions.

Step 3: Remember to give extra during the Extra Give. Your past support has meant so much to us, but the demand for our therapy services continues to surge. Every dollar you donate helps us serve as many children as possible.

Please consider donating to Schreiber during the Extra Give on Nov. 17. When you give extra, extraordinary things happen.

Happy birthday, Michelina

“Can we see, yet?” Amy asked.

“Not yet,” came a voice from the side of the truck.

Then a moment later: “OK, now you can look.”

Amy and Michelina, a soon-to-be-10-year-old from Lancaster, walked slowly around the front of the truck. That’s when she saw the surprise.

Two small ponies, gentle brown and white ones named Finn and Valor.

She covered her mouth, but a quiet squeal of delight managed to escape. Michelina loves horses. She loves all animals, really. She has received occupational therapy at Schreiber for about two years, and Cami, a KPETS therapy dog, has been her constant companion.

KPETS volunteer Rhonda Taylor, who handles Cami, knew about Michelina’s love of horses and suggested to Amy the birthday surprise (her birthday is Sept. 30). Rhonda contacted Julie Good, who runs a Lancaster County horse farm and provides horses to KPETS for equine therapy. Julie said she could bring the ponies.
Mary Riley, Michelina’s grandmother and legal guardian, signed off on the idea, and that’s what brought all of them to Schreiber’s parking lot Tuesday afternoon.

“(Schreiber) has a wonderful staff; you all are so good at what you do,” Mary said. “And working with KPETS has really helped open up Michelina.”

Mary said her granddaughter is on the autism spectrum and has post-traumatic stress disorder. Her parents were on drugs, Mary said, and Michelina was born addicted to drugs. Mary and took custody when her granddaughter was 3 months old.

Amy has been Michelina’s only therapist in her time at Schreiber.

“She’s made a lot of progress,” Amy said. “We’ve really been working on her with self care. Things like hair brushing and brushing her teeth and getting herself dressed. And we work on social skills, so we talk to people in the waiting room.”

She’s come a long way. To stop and talk to a grown up would have been stressful a year ago. Now, she handles it well. Of course, it helped that Cami was nearby.

“When she’s getting stressed, Cami will lay her head on her lap,” Amy said. “As long as (Michelina) can get through her social interactions, she should be able to do pretty well with her life.”

Just at that moment, Michelina finished putting a braid in Valor’s mane and gave him a goodbye hug. That connection might just be the way Michelina learns to live to her fullest potential, which is always the goal here at Schreiber.

“She relaxed when she’s around animals,” Amy said. “Maybe that’s what her future will hold.”
When you make a contribution to Schreiber, you help us do the work that makes it possible for children like Michelina to reach her fullest potential. Please consider a gift to Schreiber today.

Preschool gets a visit from a GrumpaSaurusPotalope

Randall, who lives in East Hempfield Township, recently visited Schreiber’s S.T.A.R.S. Preschool where his daughter, Harper, is a student. He came to read his new book, “GrumpaSaurusPotalope.”

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.
From there, he started playing with some other words that would kind of suggest hungry and tired. Here’s a passage from an early page after one of the children in the book skips a midday nap:

“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.”
Randall and Jaci used Amazon’s CreateSpace self-publishing platform to lay out the pages with the images on them. They went through two proofs and a bunch of revisions before signing off on the final version in May. He visited Schreiber in early June, Harper in the circle with her friends and Leah and Elle watching from the back.

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 has sold about 30 copies so far, and he’s trying to promote it on social media with author pages on Facebook and Instagram. In between work and going to Millersville to get his master’s degree in social work, he doesn’t have a lot of free time.

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.

Michael Corretger: Hearing is believing

Like a lot of the kids we see at Schreiber, Michael has had a pretty rough start to life. His mother, Migdalia “Mickey” Malave, worked third shift at Lancaster General Hospital while she was pregnant. After Michael was born, she went back to work, and he stayed with a woman who offered day care services out of her home.

When Michael was about a year old, he started experiencing seizures. Mickey said they were afebrile seizures: She said he would look like he was daydreaming or zoning out.

He was also prone to ear infections. It turned out the ear infections would cause fevers, which would then often trigger the seizures.

Mickey said she quit her job so she could devote more time to taking care of Michael, running him to doctor visits or having tests done.

“And I needed to find a new day care,” Mickey said. “She was very nice, but she wasn’t set up to take care of him the way he needed.”

She worked through a long list of interviews with different centers before she came to Schreiber and met with Christina Kalyan at Circle of Friends.

“I would be talking and asking questions and everything would be fine, and then I’d mention Michael’s seizures, and I’d get this look,” Mickey said, recalling her experiences with other centers. “When I talked with Christina, she said, ‘What kind of seizures?’ She was the only one to ask that. Then I got the tour and saw everything you do here, and I was, like, yes this is the place.”
She was even more sure about her choice when Christina started talking to her about Michael.

“My son was 13, 14 months old, and he couldn’t say ‘Mom’; that didn’t seem right,” said Mickey, who has two older daughters, Monique, 14, and Jasmine, 13. “I had him in for a hearing test, and they said he was fine. But Christina noticed he couldn’t hear. She said, ‘You have to be his advocate. Insurance will cover this if you take him to an ENT. Get him tested again.’ I did, and they found he had the fluid building up in his ears and wasn’t hearing well.”

Michael is 3 (and turns 4 in August), and he’s finally starting to turn some corners. He underwent surgery in May at Lancaster General to put tubes in his ears to clear the fluid buildup from the infections and restore his hearing. While they did that, doctors also took out his tonsils to relieve sleep apnea.

He receives speech therapy at Schreiber to help him overcome the speech delay caused by his hearing impairment, and he’s on medicine to help control the seizures.

All of that means he’s sleeping better, hearing better and speaking better. Mickey couldn’t be more happy with Michael’s progress at Schreiber.

“It’s been a wonderful experience,” she said. “I wouldn’t change it for anything.”

***
Help us to provide therapy and educational services for children like Michael. Visit our DonateNow page here and set up a recurring gift. Your $10 monthly gift will pay for one half-hour of therapy or keep Circle of Friends stocked with blankets for the babies in our new infant care room. Questions? Call the Financial Development Office at 717-393-0425 ext. 105.

Seeing the glass half full with Shelby Stroman

Shelby was born with numerous complications tied to having Aicardi syndrome, a rare genetic disorder that occurrs almost exclusively in females. The condition leads to difficult-to-control epilepsy, developmental delays and retinal defects.

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.”

The family started coming to Schreiber in March 2016 to receive all three types of therapy — physical, occupational and speech.

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’re extremely pleased with the quality of the therapy and the concern and empathy of the staff,” he said. “We’ve had a great experience.

“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.

Summer means camps at Schreiber

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.

Anthony Melendez’s new look

On top of that, Anthony was also born without his right ear, the result of a rare condition known as Goldenhar syndrome. Jen Melendez, Anthony’s mom, said his other physical challenges had been identified before he was born. WIth his various conditions to monitor, doctors didn’t recognize the ear was missing until after Anthony was delivered at Children’s Hospital of Philadelphia in June 2010.

Since then, Anthony has yearly follow-up appointments with Dr. Scott Bartlett and a team of cranio-facial specialists at CHOP to monitor his progress. Jen said Dr. Bartlett had told her that Anthony might be able to undergo a procedure to improve the appearance of the area where his ear was missing.

She wasn’t in a big hurry to do the surgery, mainly because it wasn’t something she thought needed to be “fixed.”
“We used to call it his love nub,” Jen said. “We didn’t make a big deal out of it. He was perfect to me.”

The CHOP doctors are one of the few places in the country trained in MEDPOR ear reconstruction, a procedure developed by a Beverly Hills plastic surgeon that uses a plastic implant attached using the patient’s own tissue.

For Anthony, doctors would mold the implant from his fully formed ear, take some tissue from his scalp that would serve as a kind of living glue and stitch the implant into this tissue and onto the side of his head. Then they would take some additional skin from his groin and stitch that over the implant to make it look more like a real ear.

Jen went ahead with the procedure for Anthony on Nov. 21. The surgery took seven hours, and he was in the hospital for two days, leaving in time to be home for Thanksgiving.

Two weeks later, the protective mold came off and she was able to see his new ear for the first time.

“Even though they try to prepare you for everything involved, it doesn’t completely prepare you,” Jen said. “I was expecting to see a perfectly formed ear, but it was swollen and bruised. It didn’t look like an ear at that point.”

There were a couple of setbacks requiring two additional surgeries – one in December and another in February.
By mid-March, six weeks after the third surgery, the swelling and redness were fading, and Anthony was beginning to look like he had something approaching a normal right ear. The new one is still a little larger than the one he was born with, but that’s on purpose.

“He’ll grow into it,” Jen said.

Still, it’s been a stressful time.

“Living through it and watching him go through it, it takes a toll on me,” Jen said. “There were times I thought the implant was failing. I was doubting myself.”

During a recent physical therapy session, Anthony was more than willing to stop for some pictures. He was still the same bouncy little boy. The process doesn’t seem to have changed him, even if he understands that he is changed.

“At one point, we finally talked about it,” Jen said. “I said, ‘That’s your ear.’ And he said, ‘That’s my ear? For me?’ And I said, ‘For you.'”

She turned back to watch as Anthony continued with his therapy session, taking one more step on the long journey to realizing his fullest potential.

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If Anthony’s story moves you, visit our donation page and consider a small recurring contribution. Your monthly or quarterly gift will make a difference in the lives of Anthony and the thousands of kids we see throughout the year.

Scotty Chappell adjusting to life ‘untethered’

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

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

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

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

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

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

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

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