The Children's Institute Blog

The Family Recruiter Story: National Adoption Awareness Month

Posted by The Children's Institute - Nov 29, 2017

It’s never just another day at Project STAR. There’s always a person in need, a crisis to avert, a family to unite, and a life to change.

Jeff Kazarick is getting into a rhythm there. Since March, he’s worked as a family recruiter with the Wilkinsburg-based social-services arm of The Children’s Institute, who we profile today as part of National Adoption Awareness Month.

“You always hear about the bad things in the news. But seeing how many good people there are, who want to open their homes – you never get used to that,” Jeff said. “It’s an amazing thing.”

After working for 16 years at The Bradley Center, a behavioral health and child services organization in Robinson, Jeff is now the gatekeeper for how Project STAR communicates with prospective foster-care and adoptive families. He organizes information night meetings, fields endless e-mails and phone calls, and helps an average of 10 families enter foster care each month.

“The need to provide a safe and loving home for children in need – that is the main reason everyone’s there in the first place,” Jeff said. “Any family, any individual who shows an interest in foster care, I’m the first contact they have. And I get them going in the right direction.”

That’s no small task. Project STAR served 2,346 children and families in Fiscal Year 2017. Why such interest and engagement?

“One constant response I do get from a lot of the families is that the reputation of Project STAR led them to the agency,” he said.

Jeff also is being modest. Amy Rendos – Jeff’s direct boss and Project STAR’s supervisor of placement services – said he’s taken on much of the responsibility for being the point of contact in Greater Pittsburgh since the departure this summer of a second, more senior family recuiter.

“The family recruiter is the starting point of foster care, they’re the first impression. Recruiters are our envoys into society,” Amy said. “And people remember that first person as part of their family story.”

“Jeff has taken on so much,” she added, “and handled in wonderfully.”

Jeff, for one, is excited to be a part of the team.

“What I really love most about my job is the versatility,” he said. “On a day-to-day basis, it’s just exciting for me.”



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Older Youths and Foster Care: You Can Change The Statistics

Posted by The Children's Institute - Nov 20, 2017

He was 16 years old and had spent most of his life in the system, from residential treatment centers to foster care homes that never led to adoption. A Wayne County native, he had been separated from his biological sister and taken across Pennsylvania. He had intellectual disabilities, and had suffered from physical abuse and neglect.

“I remember printing out a map of Pennsylvania. I starred each place he had been to, whether it was a treatment facility of a foster-care family,” said Katie Ashman, his case worker at Project STAR. “I remember going to a supervisor and asking, ‘Should I share this with him?!’ It was overwhelming how many places he had been.”

Nearly two out of every five youths who do not fins permanency with a family – who we profile today as part of National Adoption Awareness Month – will go homeless or “couch-surf” in their young-adult lives. They are three times more likely than peers who live with biological parents to receive special-education. They are twice more likely to suffer post-traumatic stress disorder than Gulf War veterans. Less than two percent of them will go on to earn a college degree but more than 270,000 of them are now in prison.

But, there is hope.

“There are things we kind of put on the table for them,” Katie said. “It’s about just finding them that one family who can look past their challenges, work and support them, and not give up, and give them a chance.”

Bethany Leas, Project STAR’s manager of placement services, said many of these challenges can be solved through education and awareness.

“It’s fear of the unknown, a fear of perceived behaviors,” Bethany said. “But there are families out there. We have seen these families and we have seen these young adults go on to be successful.”

“There are families that are committed and do this and change these kids’ lives,” she added. “People can be the change. They are the catalysts to change these statistics.”

Katie and Bethany agreed a lot of the issue is the need to change perceptions of older youth – especially with families or adults starting on the foster-care journey.

Katie worked with the 16-year-old boy for two years and he later went back to a foster-care family across Pennsylvania.

It’s also important to work toward the change you wish to see, as families and professionals, Bethany stressed.

“It’s do-able, it’s possible,” she added. “One family can be the change these kids need.”

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Donor Profile -- Wunderkind Fundraiser Jacob Haugh

Posted by The Children's Institute - Nov 15, 2017

Three years ago, when Jacob Haugh turned nine, he chose to stop receiving birthday gifts.

Instead, he said, he wanted people to donate the money they were going to spend on him to Pirate’s Charities and The Children’s Institute. Since then, he has raised nearly $25,000 for both organizations through Wins For Kids.

To Jacob, who will be honored today as the 2017 National Philanthropy Day’s Outstanding Youth Award winner, “it just kind of felt normal” to give back.

“I feel like I have everything I need and I just kind of thought, ‘Let’s do something for someone else,’” said Jacob, now 11, of Edinboro in Erie County, Pa. “I sometimes think of what I could get but I realize the money’s helping other people.”

He had some help along the way. In addition to support from his parents, he’s enlisted family, friends –even staff at James W. Parker Middle School, where he’s a sixth-grader.

“Our community has been buzzing about Jacob for several years,” said Jason Buto, the principal at Jacob’s middle school. “So, when he came here as a fifth-grader last year, I was aware of who he was and what he did.”

Last year, Jacob hosted a faculty breakfast at the school as a fundraiser. This year, Mr. Buto told him it was time to step up his game.

Jacob organized A Wins For Kids World Series, where the fifth- and sixth-grade homeroom classes would compete in a fund-raiser to see who would play the teachers in a wiffle-ball championship. (The final World Series game was held Nov. 10; the teachers won, 4-3. The fundraiser brought in $827.02.)

“We don’t have many kids that we can put this kind of responsibility on their shoulders,” Mr. Buto said. “Jacob, in my career, is the only kid I’ve seen who can do this. He is the quarterback on this.”

The story takes on another element because Jacob has autism and, in his own words, doesn’t want his mind to overpower his heart.

“Jacob has his own challenges. Having those challenges and being able to do what he does is an amazing thing,” Mr. Buto said. “It’s an example to other kids – it helps them see they can do great things.”

Jacob enrolled his uncle, who helps coach the California University of Pennsylvania men’s ice-hockey team and got them to sponsor a fundraiser when they played Robert Morris University.

And he enrolled his parents, Chad and Megan, who have been tasked with helping manage the money-collection activities of this fund-raising superstar.

“We’re pretty proud parents and we think it’s awesome,” Megan said. “All you could ask for is for your children to make a difference in the world. He’s setting a heck of an example for his little sister.”

For a pre-teen who exchanges e-mails with the head coach of the Pittsburgh Pirates – Clint Hurdle even brought Jacob down to spring training in Bradenton, Fla. earlier this year – Jacob is pretty modest.

“The reason I’m donating? I want to make an impact on the community, like Mr. Hurdle,” Jacob said. “It’s important for me to show other kids they can make a difference, too.”

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Krissandra, Chronic Pain And CRPS Awareness

Posted by The Children's Institute - Nov 13, 2017

It was just another day in March 2016 for Krissandra Wiles, another ride on an ATV on her friend’s small farm near Deer Lakes, Pa.

Then their quad hit a bump on the ground.

“My foot went the wrong way,” remembered Krissandra, 19, who now lives in Butler County. “My foot caught the tire and the tire just ripped off my boot and tried to take my leg with it.”

She healed slowly. Then came a random night in August.

“I woke up at 2:30 one night with excruciating pain in my legs,” she said. “I had little things throughout my whole life – I’d get arthritis pain in my knees – but I didn’t have a lot of pain until that night in August.”

Shortly after going to the hospital, she was diagnosed with Reflex Neurovascular Dystrophy (RND), a condition that leads to severe pain in the joints and muscles in children, sometimes following an injury. We are profiling Krissandra today as part of Complex Regional Pain Syndrome Awareness Month.

RND left an imprint. Krissandra dropped out of high school and had to leave a full-time job at a hardware store because of the intense pain she experiences.

“I’m definitely less active now, depending on the day,” she said. “There are days I have to rely on the wheelchair. There are days I have to use the shower chair because I can’t stand in the shower very long.”

For Louise Wiles, Krissandra’s mother, the diagnosis was something for which her years in nursing school couldn’t prepare her.

“Unless it’s something people deal with every day … it’s not something that’s easily diagnosed or easily understood,” Louise said. “For me, I didn’t understand how the body could develop pain out of nothing. It’s like her nerves are confused.”

Krissandra’s time at The Children’s Institute – first as an inpatient, now in outpatient therapy – “was the answer to the prayer that we needed,” her Mom said.

Amy Kerin is Krissandra’s physical therapist. She works with her in The Children’s Institute’s heated, therapeutic pool – where there’s less pressure on Krissandra’s joints when they move.

“And, on land, we target her endurance, strength and balance – and how we take what we’re doing here and expand it to her life,” Amy said. “We need to look at how that exercise is going to fit her life.”

Krissandra’s diagnosis has prompted therapy, as well as activism. This year, she encouraged everyone at The Children’s Institute on Nov. 9, one of her therapy days, to wear orange – the color of CRPS awareness. Many staff members took to the hallways in the vibrant autumn color.

Krissandra also takes part in a Facebook group dedicated to RND, and, in November, is posting an entry on social media every day about her experiences with RND, as well as the stories she’s collected from her peers.

“Every case in unique and what works for one person doesn’t always work for another,” said Krissandra, who described the RND community as one divided over the individual benefits of certain types of therapy, medicine, and nerve-blockers, for example. “It doesn’t seem like my pain is ever really the same. There are times when my joints give out and there are times when my joints lock up. Sometimes, it burns. Sometimes, it feels like it's freezing. The pain is always constantly changing.”

Some sources say a patient with RND experiences pain worse than childbirth. Krissandra believes it.

“It’s just everywhere,” she said. “There are days it hurts in my jaw. There isn’t anywhere it doesn’t hurt.”

To help patients like Krissandra learn to manage their pain and return to their previous level of activity, The Children's Institute offers a comprehensive program that can include Physical Medicine and Rehabilitation doctors, Physical Therapists, Occupational Therapists, and Psychologists. It's the team approach that allows our patients with chronic pain to reach their full potential.



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National PT Month: Ethan's Story

Posted by The Children's Institute - Oct 31, 2017

Ethan Theis – who was born, like 1,500 Americans every year, with spinal bifida – has undergone three surgeries in the past six months. Following the last one, which took place in May and addressed scoliosis of his spine, the 13-year-old Lower Burrell, Pa. boy went from assisted walking to no longer being able to sit up on his own.

But, on a recent Wednesday, Ethan, who we’re profiling as part of National Physical Therapy Month, smiled broadly as left his wheelchair and starting swimming laps – back and forth, back and forth – in The Children’s Institute of Pittsburgh’s therapeutic pool.

“The pool helps because I’m not really restrained by gravity, so I can move around a lot more,” said Ethan, as he waded through the water with two yellow weights. “I enjoy [various types of] therapy but this is certainly easier.”

Spinal bifida isn’t slowing down Ethan. He’s been taking part in physical therapy fairly regularly since undergoing surgery on his hip about five years ago. When he’s not in treatment, he’s doing adaptive kayaking or taking part in sled-hockey. (During a recent tournament with Children’s Institute staff, many patients enjoyed knocking unsuspecting therapists onto their sides and watching them squirm – but not Ethan. “I was kind of a softie and gave them tips,” he laughed.)

About a year ago, Ethan also took part in a neuroclinic here at The Children’s Institute that worked on his strength and physical endurance. Physical therapist Megan Fisher has been conducting the clinic, which pairs 30 minutes of physical therapy with 30 minutes of more independent instruction, for a few years now.

“It’s about total body strength – we’re looking at upper body, core, lower body, but also balance, coordination skills, endurance training,” Megan said. “I only have a half-hour so it has to be very focused, goal-driven, based on what the patient and family want right now.”

Neuroclinic treatments can involve everything from treadmill walking to activities for improving gait to ladder drills, depending on the patient’s abilities, Megan said.

“I love the neuro-world,” laughed Megan. “You see these gains, these changes in objectives and measures. When you see those changes in a neurologically impaired child, it’s exciting. You share that information with the parents and that’s when they get those big smiles on their faces.”

Christina Sublinsky, Ethan’s mother, is smiling. But she is straight-faced when she says, only half-joking, “I recommend this place to everybody – for everything.”

“This is the best place to come – they’ve just changed our lives for the better,” Christina said. “The quality of care, the opportunities you get. Ethan is super excited to come here. They just know what he needs.”

Ethan has been coming twice a week to physical therapy since his scoliosis surgery in May. That one surgery, more than others, left him shaken, his mother said.

“I got him in here as soon as I could,” Christine said. “He was scared, too, because he couldn’t do anything he could before. Now, he’s doing laps in the swimming pool.”

Ethan, in the meantime, has interests and takes part in activities like any other teenager. Well, maybe any other ambitious teenager. Inspired “to be a weirdo,” he says, by Lord of the Rings author J.R.R. Tolkien, Ethan is learning the once-touted universal language Esperanto and writing a book where characters speak in a language of his own creation.

“It’s just hard with his diagnosis,” his mother said. “Ethan’s had therapy his whole life. He needs to keep moving.”



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Doctor Spotlight: Bethany Ziss

Posted by The Children's Institute - Oct 31, 2017

We conclude our Doctor Spotlight series today by interviewing Bethany Ziss, Developmental Pediatrician.

Stay tuned for our new series, which focuses on therapists and clinicians, and launches in November!

NAME: Bethany Ziss

Q: When did you start working at The Children’s Institute?
A: 
April, 2014

Q: Where did you grow up?
A: 
New Jersey and then Massachusetts. I lived in New Jersey until I was 8, which is the longest I’ve ever lived in one place

Q: As a child, what did you want to be?
A: When I was about 5, they broadcast open heart surgery on television for the first time. Apparently I came into the room when my father was watching, sat down on the floor, and started asking questions. So I suppose I wanted to be a doctor. I read a lot of books about disability when I was a kid and that has been an interest since I was in preschool. Then I got really into science and thought I might be the one to sequence yeast DNA. But someone else finished that while I was still in college. And I was still reading articles about medicine the whole time. That’s when I realized I wanted to be a doctor all along. I taught school for five years and then went to medical school.

Q: Where did you go to school?
A: How far back do you want: Elementary School: New Jersey and then Massachusetts

Q: What inspired you to go into your field of study?
A: Years of reading about disability when I was younger, and then becoming more involved with the disability community and eventually the neurodiversity movement.

Q: What do you like most about your job?
A: 
I helping children with developmental disabilities grow into the best selves they can be.

Q: What do you like most about living in Pittsburgh? 
A: I love being able to walk almost everywhere I need to go, even to work many days. When it’s too far or too icy to walk, I can take the bus. I am a “city girl” at heart.

Q: Do you have any pets?
A: 
Not right now. I had pet fish when I was younger and they all had food names, like Peach, Licorice and Lemon Meringue. I am trying to grow a windowsill herb garden, if plants count.

Q: Do you have any hobbies?
A: I collect hobbies. My main ones these days are Scottish Country Dance, cooking and solving crossword puzzles. I also love Broadway musicals and am a huge Trekkie.

Q: What is your favorite sports team?
A: I can’t tell one sport from another.

Q: Who is your favorite musician?
A: Most of the music I know was written and performed before I was born.

Q: With what superhero do you identify? Do you have superpowers?
A:  
I’ve never really followed any specific superheroes. Years ago, an acquaintance in the disability community said that problem solving was the disability superpower. I think she was probably right. This tends to mean doing a lot of advocacy and using a lot of duct tape.

Q: If you were stranded on a desert island, what three items would you bring?
A: 
The usual answers are water, a fire-starter and a radio to call for help.

Q: If you were given a $1 million check to give to one group or charity – other than The Children’s Institute – who would get it?
A: 
I’m on the steering committee of the Pittsburgh Center for Autistic Advocacy, which is an organization run by autistic people to advocate for the needs of autistic people of all ages in Pittsburgh. We have been working on self-advocacy training, promoting sensory friendly events for children and adults and advocating for the rights of disabled people in Pittsburgh and across Pennsylvania. PCAA’s main purchases so far have been a portable wheelchair ramp and bathroom signs, and has been reliant on grants to fund ASL interpreters for events. So $1 million dollars would go a very long way.

Q: What has been your strangest job? 
A:  
My first job was teaching magic to children in a summer program when I was still in high school myself. This is the one people always ask me to explain when they see my resume. “Biology teacher” isn’t a strange job but there were some strange moments during my years teaching at a residential school for teens with behavioral needs. One winter, I was snowed in with my students. Also I have been on a field trip to every museum in Delaware and Maryland including the Ward Museum of Wildfowl Art.

Q: What do you want to do when you retire?
A: 
Do I have to? I hope to be able to keep working with children with disabilities as long as I can.
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National PT Month: Gross Motor Group

Posted by The Children's Institute - Oct 30, 2017

For two of the six years she’s been at The Children’s Institute, physical therapist Jen Brilmyer has helped coordinate gross motor group, which exercises children’s physical skills, as well as their social ones.

Dorian Rice Haigh playing kickball“Really, we serve all different types of children,” Jen told me, “but primarily we’re looking at children who have difficulty in issues engaging in skills with peers, such as ball skills, coordination, endurance skills – things like that.”

In addition to regular physical therapy, the gross motor group engages children – typically ages four to 10 – in groups. But, Jen stressed, she and other clinicians “tailor the activities to meet the needs of each child.”

“The thing that makes gross motor group unique is they’re participating with their peers,” Jen said. “We want them to do things that typical kids their age do.”

For Dorian Rice Haigh – a nine-year-old who is on the Autism spectrum and has Ehlers Danlos syndrome, which causes issues with his muscles and joints – gross motor group was “perfect, not too many people, not too little.” And, true to The Children’s Institute’s mission of engaging children in meaningful, sometimes playful, therapy, it was a lot of fun.

 

“Whichever exercises the kids chose is what they worked on most,” said Dorian, who liked to pick kickball activities. Others chose basketball skills – or soccer.

 

“It was pretty helpful,” he said, with a big smile. “I learned to play line-tag.”

 

Dorian’s mom, Cindy, said he’s been receiving physical and occupational therapy since he was three or four years old.

“They’re tremendous at The Children’s Institute – they get him,” Cindy said.

“Balance is an issue to him and he’s much, much better with that now,” she added. “Standing on one foot, standing on the other foot. Before we knew what was going on, he’d fall and bruise so easily.”

“Now, he’s doing great.”

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Rock-Painting at The Day School

Posted by The Children's Institute - Oct 30, 2017

Lynne White stood in front of her students and some waiting rocks at The Day School of The Children’s Institute on a recent Tuesday and gave the instructions.

“We’re going to paint rocks,” she said. “Why are we going to paint rocks? One, because it’s fun. And, two, we’re going to hide them and there’s going to be a message. We’ll hide the rocks and other people can find them. We’ll talk to them on the computer and we’ll make new friends!”

And, with that, roughly 10 students grabbed for tubes and tip-proof cans in a host of colors – pale blue, cactus green – and started painting away.

One girl painted proudly in blue glitter. Her teacher’s aide, Sally Stewart, said she had painted with her before.

“She’s a pro,” she laughed.

Student Mykenzie Brush already had ideas about where she wanted to hide her rocks: the school bus and two nearby Squirrel Hill businesses – Dunkin’ Donuts and Rita’s.

“You think we could find a spot in the garden?” Lynne asked her.

“Yeah!” blurted out Mykenzie enthusiastically.

“I bet we could,” responded Lynne.

Teachers said the students will start by hiding the painted rocks around Children Institute’s Squirrel Hill building, then extend beyond our borders. They expect to start hiding the around Squirrel Hill soon.

Day School Speech-Language Pathologist Emily Kaplan is doing the painted rock project with about 20 students in three classrooms. She heard about the project through the news but didn’t go forward with it here at The Children’s Institute until she was urged by a fellow staffer.

“The older class goes on community-based outings so I thought it would be really fun,” Emily said. “It’s a good way for them to get out and interact with the community.”

Found one of the rocks? Go to www.facebook.com/childrensinstituterocks to send back a message!



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Kayaking and National PT Month

Posted by The Children's Institute - Oct 27, 2017

Pittsburgher Ann Lapidus became blind 10 years ago due to medical complications but that hasn’t stopped her from tandem-biking or water-skiing. In August came a new activity: kayaking.

“I really enjoyed it,” Ann said. “It’s one of those things that could be really relaxing, like moseying down the river, or you could make it really physical. You choose the pace.”

Recently, Ann and her seeing partner, Jason Cade, trekked to The Children’s Institute’s heated, indoor pool to gain more experience with kayaks in a class provided through our partnership with Venture Outdoors. We are highlighting the adaptive kayaking program as part of National Physical Therapy Month.

For Venture Outdoors volunteer Trip Leader Joel Johnston, an American Canoe Association (ACA) certified kayak instructor, who coached Ann and Jason on paddling during a more than two-hour, one-on-one session Oct. 9, it’s a simple equation.

“There are so many great places to paddle in Pennsylvania, so many great rivers,” he said, “and we have just under a dozen ACA-certified kayaking instructors working with Venture Outdoors .”

Future adaptive kayaking sessions will be held on a Saturday morning in November, and then monthly from January through April. The classes aim to provide people with physical disabilities an opportunity to discover what outfitting is necessary to get them paddling comfortably in a kayak. More information is available on the activities calendar at www.ventureoutdoors.org. (Interested volunteers also should contact the organization.)

Christy Neltner, a physical therapist at The Children’s Institute, has been leading adaptive kayaking programs like this one since taking part in an Adaptive Paddling Workshop at Bay Cliff Health Camp in Michigan and training with the ACA.

“Water is the ultimate equalizer,” Christy said. “In this program’s boats, you don’t know which people are the staff and which are the people with disabilities.”

Christy started fundraising for the adaptive kayaking program in 2010 and participants took part in a session for the first time in 2014. She says kayaks can be modified for those with physical limitations in various ways – outriggers can help a person with seizure disorders avoid tipping in the event of an incident, or pivot posts can be installed for people who need assistance gripping a paddle or doing repetitive motions.

“Sometimes, we get participants who’ve never been in a pool,” she said.

The level of difficulty for the workshop ranges from easy to advanced based on the ability of the participant, according to Venture Outdoors. Classes are limited to four participants and have a one-to-one or two-to-one Trip-Leader-to-participant ratio based on the participant’s needs. You must be at least 12 years old to participate.

For Joel, the classes are just the beginning. He hopes to see people with physical limitations attending Venture Outdoors public outings and Kayak Pittsburgh rental locations. With advanced notice, the organization can work with an individual to modify a kayak so they can participate on outings or rent a kayak.

“That’s kind of where we’re going with this,” Joel said. “The idea is not to have people segregated.”

From watching Ann get into her yellow kayak and paddle last week, you wouldn’t have had any idea she had physical limitations – and that’s the point.

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National PT Month: Learning From Yoga

Posted by The Children's Institute - Oct 26, 2017

Physical therapist Katherine “Kit” Concilus sits on the blue mat, her legs folded symmetrically in front of her, and – with two teenage Children’s Institute patients in tow – she begins the yoga class.

“Eyes closed, lips together, teeth apart. Now, use your mind’s eye to explore the inside of you. Begin by looking at your own brain, imagining that you can actually see it. Now move your attention to your skull, and the muscles of your face, your forehead, softening any areas of tension.” Kit intoned, her voice gentle, even-keeled and, yes, somewhat soothing in this dimly lit room. “You are listening to your body and it will tell you what it needs.”

Kit has been practicing yoga for some 20 years and leading yoga sessions at The Children’s Institute for nine of those years. For patients with chronic pain, in particular, the sessions – held once each week, on Monday afternoons in the Multi-Purpose Room – have proven valuable as a part of physical therapy.

“We practice breath work throughout each session. We have educational handouts to reinforce our instruction.” Kit said. “And we catch patients at all different levels of their pain journey. Our hope is that our patients will learn these important skills and use them for the rest of their lives.”

Yoga instruction includes supervised practice of postural training, breathing techniques, stretching, strengthening, coordination, balance training and guided relaxation, Kit says in a letter she send to participants. Emphasis is placed on coordinating the breathing pattern with movement and paying attention to the details of body alignment. Activities can be modified as for individuals, while keeping a positive, quiet atmosphere.

Who benefits from the classes? People with diagnoses ranging from RND and chronic pain to those with brain injuries, developmental delays, and cerebral palsy are targeted. And the results are looking good.

Dozens of patients took part in the classes between 2014 and 2016, and metrics showed Functional Disability Inventory scores – a 15-item instrument originally developed to assess disability in children and adolescents with chronic abdominal pain – improved by 56 percent, after taking the class, in one year alone.

That’s reason enough for Kit to keep up the classes.

Like she says, anyone can tune in to the messages their bodies are sending them.

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