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.”
“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.
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.
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.”
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.
“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.
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.
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.
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.
His mother Mandy was feeling anxious about what she was seeing with her son. Thomas was talking by the time he was 3, but there were problems.
“He could speak short sentences, but he was pushing his words together and I couldn’t understand him,” Mandy said.
He had the vocabulary, but he struggled to get the words out. And then he would get frustrated or would act silly to redirect, his mom said.
After checking with their pediatrician and with their therapist at IU-13, she decided she wanted private therapy.
“So we came to Schreiber,” Mandy said.
They started working with Katie, who noticed something right away: Thomas was talking too fast.
“When he came in, he was hard to understand,” Katie said. “He talked really fast. He was making articulation errors, grammar errors. He was using wrong verbs. The first rule we had was: Slow down.”
Mandy said it was like she flipped a switch.
“By the third session, he was a different kid,” she said. “She gave him the tools in three sessions to make him just relax. She gave him the reassurance and the confidence to slow down.”
His problems aren’t as complex as some of the kids Katie sees. There’s no underlying diagnosis other than speech and language delay. And while each child is unique, it’s fairly common to see kids with language delays, Katie said. T was evaluated before he came to Schreiber, and that therapist recommended services.
“Sometimes, kids need services to correct those things,” she said. “Based on the great progress he has already made, starting therapy was a good choice.”
Thomas has a specific set of therapy goals. He’s learning to read cues so he’s aware when people have trouble understanding him. He’s working on the difference between past tense and present tense.
“He might say ‘we eated pizza’ or ‘we go to the store’ when he meant ‘we went to the store,'” Katie said.
He’s working on a couple of specific sounds that give him trouble, like making sure an “L” sound doesn’t slip into a “W.”
And, of course, he’s trying to take it slow.
Mandy said the difference is huge.
“He’s proud of his behavior,” she said. “He’s a storyteller, and he’s funny. He’s able to use words to make a joke. He’s T now – the T I always knew he would be.”
And she gave Katie and Schreiber all the credit.
“They are magicians,” Mandy said. “And that’s not everywhere. Even in the medical community, that’s not most places. This place is special.”
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.
Over with the preschool-age kids, Betty Kuhn watched in one corner as a boy sprawled out on the floor with dozens of toy cars. Next to them, Joe Finger and his little buddy Grayson Pavlichko worked on pictures they were painting together. Several kids lined up to talk with Loretta Drolet about their little toy animals.
And out on the playground, Leon Hutton tended to a pile of sticks that served as a make-believe fire.
The unusual thing about these volunteers? They are all at least 79 years old. Skip is the youngster of the group. And the oldest? That’s Loretta, who turned 100 in August.
They come from St. Anne’s Retirement Community in West Hempfield Township, and their visits are coordinated by Hope Long, activity director at St. Anne’s.
All of the St. Anne’s volunteers are parents and grandparents, and they all said they enjoy the visits to Schreiber because they like being around the kids.
Loretta was impressed by how smart the kids are. She recalled one of the children showed her a little animals she had been playing with.
“I said, ‘That’s a doggie.’ And she said, ‘It’s a Dalmatian,'” Loretta said.
Her friends from St. Anne’s are just as impressed with Loretta.
“When I expanded our volunteer base,” Hope said, “I knew Loretta would be perfect. She’s kind and gentle. I knew she would be a good fit.”
“Loretta is my inspiration,” said Leon, who is still basking in the glow of recently being named St. Anne’s King of Hearts for 2017. “I thought if she can do this, I can do it, too.”
“The time at Schreiber has been therapy for me,” he said. “When a person comes out of themselves and gives time, there’s nothing better.”
That’s exactly the kind of reaction Christina Kalyan hoped for when she introduced the program about a year ago. Christina is director of Circle of Friends. She said she thought the kids and the St. Anne’s folks could all benefit from getting together.
“There are a lot of families that don’t have a grandparent figure in their life,” Christina said. “And I wanted to offer (the seniors) a chance to get up and move around and do something that might add a little more meaning to their lives.”
“Our residents love helping others and still have a strong desire to be needed and useful,” Hope said. “Schreiber is the perfect opportunity to allow this to happen. It really is a wonderful partnership and allows everyone the freedom to be who they are with no judgments or expectations from either group. It warms my heart to know that the universal language of love knows no age barrier! We appreciate the opportunity to be a part of the Schreiber family.”
Back in the preschool-age room, Joe and Grayson had finished their paintings, exchanged them and gave each other a hug. These two formed a special bond from Joe’s first visit. Grayson is more than happy to sit on Joe’s lap and just hang out. And Joe’s gruff exterior crumbles away when he talks about his young friend.
“When we see each other and I leave, he makes me cry,” Joe said.
No, this is definitely not your typical volunteer group.
Ever thought about volunteering at Schreiber? Are you retired, like the folks at St. Anne’s, and looking for a fun way to give back and be around kids? Join us as a Swim Buddy with the Schreiber S.T.A.R.S. preschoolers. Help in the Circle of Friends Academy classrooms. For more information, contact Volunteer Coordinator Susan Fisher by email or at 717-393-0425 ext. 129.
Beginning in infancy, LJ’s guardians noticed many delays in his development, and he was referred to Schreiber by a local psychologist. He began his time at Schreiber in OT about a year and a half ago. LJ recently began receiving speech therapy with Jeremy Ewell, who is helping LJ learn social cues and improve his focus. Jeremy noticed LJ’s difficulty in concentrating and staying on task and developed strategies to improve his level of focus.
By frequently switching tasks and using a visual calendar, LJ is able to better process what his end goals are, giving him more incentive to remain focused. This is just one example of the many tactics Jeremy uses to build LJ’s cognitive progression. But it doesn’t seem like work to LJ, Kathy said. He starts every Wednesday saying: “Today is my day to see Mr. Jeremy!”
In spite of his challenges, Kathy Steibnaecher, his grandmother, describes LJ as a happy, music-loving 5-year old.
“He loves Mickey Mouse, Captain America, Winnie the Pooh, swimming and trucks,” Kathy said. “He’s always quick to tell us he loves us, say thank you, and share… He’s an amazing little guy!”
In his time at Schreiber, Kathy has noticed significant improvements with LJ. Even though he still struggles to interact with other children, LJ is now able to play alongside them. Parallel play with others is a large stepping stone for LJ for the end goal of socialization, Jeremy said. Kathy has also noticed the progress LJ has made with his focus.
LJ’s type of autism allows him to understand and follow directions, and he is capable of other kinds of communication, placing him socially ahead of many kids with autism.
“He has a lot going for him,” Jeremy said.
Jeremy’s work with LJ is a good illustration of how our therapists team up with parents and guardians to give families the tools that allows kids to practice at home the skills they learn at Schreiber.
At Schreiber, our average reimbursement rate is 42 percent. That means for every $100 in charges we submit to insurance companies, we receive, on average, $42 in payment. Please support our work so that we can continue to provide services to LJ and the thousands of other children we see each year. Just visit our Giving page here, and make your donation today.
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.
Bethanie Allen: I was working with a kiddo at Schreiber, working on shoe tying. None of the stories I was using were amusing to him – the bunny ear thing, the tree and the rabbit – none of it was getting his attention.
I was starting the process over again – you know, doing the X – and I was, like, what can I do? And the thought of a pirate story just popped into my head . And every step after that was pirate related, this whole journey of finding treasure… it kept his attention the whole time. And he was able to repeat the directions back to me, which was awesome, because his attention was not the best.
I kept doing it quite a bit with him to watch the carryover. And then I started to use it with every kid I had shoe tying goals for.
DF: At some point, then, you had the idea to turn this into a story book?
BA: I actually think Bernie (Hershey) mentioned it right after I told her about it. And then it was one of those things that just sat in the back of my mind. I knew a visual cue would help carry the story even more.
I tried to send the story out to some publishers, and it wasn’t getting picked up, which was really defeating. I talked to my husband about, and I finally said, “We just need to self-publish this.” I wanted to get it out to more people, and I knew it would really have an impact for independent shoe tying
DF: You had to learn how to publish a book. How did that process work?
First, I had to find an illustrator. We ended up finding an experienced illustrator online, Toby Mikle. He was able to help guide me through the process.
We started in October, and it took about 3 months. He got the illustrations done really fast. It took a lot of re-editing and making lots of little changes, then I finally had to hit submit.
It’s an exciting process, but it’s filled with anxious thoughts: What is everyone going to think about this?
DF: The book is out now?
BA: Yes, the book was released Jan. 11. I’ve been marketing it through Facebook and selling it on Amazon, and I have a few printed copies that I can sell. I would love to have it stocked in therapy places or toy stores or book stores. I’m working on connecting with locally owned, mom-and-pop kind of places.
DF: How will it feel to come back to Schreiber with your book?
BA: It means so much to come back and do (the book event) where it all started. This might sound corny, but it’s almost like I’m following the map back to Schreiber.
It was so hard to leave Schreiber, I can’t even tell you… I’m married now. We have a great kid. I wouldn’t change it for the world. In a way, it’s like this book is a piece of Schreiber that’s with me all the time.
Bethanie Allen works at Kidswork Therapy Center in Union County. She lives near Lewisburg with her husband Josh and their 2-year-old son Braxton.