Category Archives: News

A Trike for Gracie… Great Stride’s Creative, Caring Therapists Make Dreams Come True

A Trike for Gracie…

 Great Stride’s Creative, Caring Therapists Make Dreams Come True

By Christina Swanson

When the Great Strides therapist team, working with then eight-year-old Gracie Young, asked her mom, Kelly, what were some special skills she’d like for them to work on with Gracie, that’s all it took.  Making this dream come true would take a lot more than a magic wand.  Instead, it would involve a year-long, specifically-geared learning process from initial desire to successful completion by the therapist team, along with a fund-raiser, generous donors, Santas Dan and Danny, and lots of love and patience thrown into the mix.

But that’s what makes the people at Great Strides exceptional in their dedication to doing whatever it takes to help children with special needs and their families participate in everyday activities together that typical families just do automatically.  And that’s what they were determined to do for the Young family.

Mom – Kelly’s dream was for Gracie to be able to ride a tricycle as a family activity with her mom and dad, who enjoyed riding bikes together.  It was important to Kelly, not just the activity of riding itself, but of having Gracie outdoors in nature and getting some exercise.  This would be no small feat for a child diagnosed with Hypotonic Cerebral Palsy, characterized by poor muscle tone and difficulty with balance and coordination of movements.

“Trying to find things that motivate Gracie to move has always been a challenge,” said Young.  “When we thought about bike riding, they jumped on the idea and everything started coming together.” Yes, Gracie’s “bike therapy team” of Kelly Wassmer, lead behavioral therapist, Sarah Szymanski Horn MOT, OTR/L, occupational therapist, and John Kirkland, physical therapist were happy to teach the skills needed to get Gracie to accept and enjoy riding a trike. (Others also supporting Gracie include Sarah Feigenbaum, speech therapist, Skyler Williams, teacher, and Emma Reinheimer, staff behavioral therapist.)

When Gracie was six years old she was also diagnosed with autism and that’s when she began receiving therapies with Great Strides, specifically behavioral (ABA) therapy for the first time.

“When Gracie first came to us, she had a hard time walking, poor endurance and wanted to be carried everywhere,” said Horn.  “Working on her mobility and endurance abilities, we eventually got her walking inside the classroom and outside on the playground.  The next step was to find a fun activity that would keep her moving—this was the dream of being able to bike ride with the family.

Team Gracie had already come a long way in giving her a more independent life, having worked on toilet training, being able to participate in a group academic environment by sitting still and listening to the teacher, and other self-care skills.

 

 

 

“An effort made for the happiness of others lifts us above ourselves.”
– Lydia M. Child

 

 

Now preparing her to ride a specialty bike that would be built to her needs and body specifications, would require getting Gracie used to many sensations that could be “scary” and resisted by her. With balance and muscle weakness important factors, just getting her to accept sitting on a trike and wearing straps to support her torso took a lot of time and patience.    Horn and Kirkland worked with Gracie on the action of pedaling with a special machine and put her on a regular tricycle and pushed her around to learn balance on a bike.  Horn and Wassmer worked with getting Gracie to tolerate wearing a helmet, and straps that support her torso and feet to stay on the pedals that the bike would have.  She was very afraid of being encumbered by all of this which took many steps and trials to accept. Finally, she “graduated” to actually practicing on the bike itself, but we’re getting ahead of all the parts of this special story.

Mom had found a specialty bike that could convert from a tricycle to a bike trailer by hooking onto one of their bikes for longer rides, but the cost was beyond what the Young’s could afford.  That’s when Horn got the idea of having a fund-raiser to help the Young’s get Gracie’s special bike.

With Sarah’s husband and his brother owning “Hornski’s Vinyl Lounge” in St. Augustine, Sarah set about the many months of tasks getting donors, a band, and silent auction gifts to create the “Battle of the Beers” event to raise funds.  Three St. Augustine breweries (Ancient City Brewing, Old Coast Ales, and Bog Brewing Company) donated a keg, five volunteered to work the event, the folk band Lonesome Burt and the Skinny Lizard provided the music, the Horn’s donated hotdogs, hamburgers, sodas and more beer, while sister-in-law Monica Zonni coordinated the silent auction.

The fund raiser was conducted through a 501C3 charity called Santa’s Special Kids. About 200 people participated in the event which raised more than $4,000, enough to buy the bike and have a lot left over.  These funds are currently housed by the charity and are waiting to be put to good use. The plan is to be able to help those parents who children need ABA therapy but have difficulty paying for it because their insurance does not cover it. Sarah is in the process of setting up the parameters of this fund working with Candy Hurst, BCBA, Director of Applied Behavior Analysis.

Making the whole process even more meaningful, Santa delivered the special bike to Gracie on Christmas morning!  Actually, it was Santa Dan and Santa Danny from Santa’s Special Kids who rapped on the Young’s door to a surprised Gracie and grateful parents.  Both Horn and Wassmur had therapy visits working with Gracie on her bike and then took the bike back to Great Strides to continue working with Gracie there.

Now, after an entire year that started in March 2017, Gracie is ready to take her trike home and enjoy riding it with her parents.  “It has been such a wonderful ‘ride’ seeing Gracie progressing and now being able to do something fun and outdoors with her family,” said Horn.  Great Strides’ specialists determination to find creative ways to help parents with their special needs kids has been a blessing,” said Young.  “They really did make this dream come true.”

“The therapists love for our kids is shown through all the creative ways they
help them grow and learn.”  –Kelly Young, Gracie’s mom

Other Recent Developments that are Making a Difference for Gracie

Communication Through Proloquo2Go

With communication at the heart of everything we do, team Gracie has been working with her toward transitioning the type of augmentative and alternative communication (AAC) method Gracie uses, led by her speech language pathologist, Sarah Feigenbaum MA, CCC-SLP.

When Feigenbaum began working with Gracie last summer, she was using a picture exchange communication system (PECS) that involved giving a picture (or pictures) to a communication partner. To help her advance, Sarah introduced her to the skills needed using the Proloquo2Go  system on an iPad with Gracie getting her own set-up this January. Her occupational therapist determined the best button size and spacing of her iPad that Gracie would be most successful with based on her fine motor skills. Now, she is able to select what she wants to say on the device as it speaks for her, acting as her voice. Gracie has a number of understandable verbal approximations and can use her device to augment her message.

At this point in Gracie’s AAC journey, she is able to request items and actions such as videos or to go to the restroom, as well as label items we show her using her device. When learning the meaning of new words as well as where to find them in her device, Sarah is working on getting her to choose more than one word.

 

 

“We are beginning to work on verbs in combination with objects in order to help Gracie combine them to create novel messages,” said Feigenbaum. “Her lead ABA therapist reported that she recently put together the phrase, “I want go Kelly” (her mother), indicating she wanted to go home.”

 

In order to help Gracie learn new words, her parents are also involved, coming into sessions to learn methods to teach her to quickly navigate to new words. ABA ensures she is able to use them to communicate consistently in the classroom and other environments and also teaches her new words.  Communication occurs all across all environments and it takes a multidisciplinary team in order to support and set up a child to be successful.

Skilled Canine Companions

Another new development in Gracie’s advancement that’s warm, furry and full of self-esteem boosting love is the recent adoption of Yahtzee — a canine companion for independence dog.  With the application process typically taking two years, Great Strides Executive Director Jon Edenfield, helped the Young’s with the process having written his doctoral studies on the benefits of canine companions helping advance children with disabilities, especially autism, and having adopted the center’s hardest working therapist, Nantucket.  One of Yahtzee’s missions is to get Gracie walking more.  Their adventure together is just starting and this newsletter plans a future article on the benefits of skilled companion dogs in a future issue.

“Great Strides has held our hand from the beginning, starting with Gracie’s transition from her old school, and incorporating behavioral therapy with all her other therapies have helped her tremendously.  “Gracie’s team gives us exceptional support.  They work with the kids and parents on life skills even at our homes, teaching them what they need to function in society.  The therapists love for our kids is shown through all the creative ways they help them grow and learn.”

 

Partnering with Nemour’s Continence Clinic

Partnering with Nemour’s Continence Clinic:

Potty Training BOOTCAMP

Great Strides has partnered with the Nemours’ Continence Clinic to offer families a whole child approach to successful toilet training. Sometimes toileting delays are caused by medical issues, while other times they can be caused by environmental or behavioral issues. With the partnership between Nemours Continence Clinic and Great Strides Rehabilitation, your child will benefit by having all aspects of the root cause of the toileting delay being addressed.

Since the Spring of 2017, Nemours has been referring children for applied behavior analysis (ABA) with Great Strides during evaluations after testing and ruling out physical or medical conditions that could be affecting a child’s ability to learn toilet training.  Great Strides has been working with families in this area since it first began offering ABA therapy in 2007. Of course, families are welcome to contact Great Strides directly to do an evaluation.

If a child’s incontinence has a medical component, Great Strides will refer the family to Nemours to correct the medical condition first.

As explained by Nemours, a child isn’t a small adult, especially when it comes to pediatric urology — when it comes to conditions affecting the kidneys, ureter, bladder, urethra, penis and testes – because their reproductive system and urinary tracts are still growing and developing. Testing for pediatric urology problems can include urinary and fecal incontinence, urinary frequency and urgency, recurring urinary tract infection (UTI), failure to toilet train and chronic constipation.  Some children with disabilities may refuse to participate in scheduled toilet training programs or have an aversion to sitting on the toilet, while others may be successfully trained for urination but have to have wear pull-ups for fecal elimination.

“Once a child’s pediatrician and Nemours’ specialist have reviewed the medical aspect of the child’s incontinence, and if there are still issues, because these professionals are not trained in behavior analysis, the family would be referred to us,” explained Candy Hurst, BCBA, Director of Applied  Behavior Analysis.

How Does ABA Help with Toilet Training?

Applied Behavior Analysis is the science of how the environment affects a person’s learning and behavior. Toilet training, for some kids, needs to be specifically designed with
environmental modifications to increase the opportunity for success.

Such modifications may include: increasing comfort in the bathroom, schedule of trips to the bathroom, caregiver responses to successes on the toilet and accidents. Once the child begins to experience success with toileting, the family caregivers then have something to reinforce, thus increasing the likelihood that the child will continue to have success. This schedule of reinforcement is a vital component of toilet training. The bottom line is answering: What are the issues to address and how are we going to address them?

Presently, there are seven children onboard with the “potty training boot camp” program. “There are many different things that can improve a family’s quality of life and one of the biggest things is toilet training,” said Hurst.  “We encourage parents to reach out and get their child trained and out of pull-ups because even if a child is a teenager, there still is hope.”

—-

“The Great Strides program truly works!  Regardless of age, behavior issues, medical history, or diagnosis, this model is tailored made for your child. At the age of 3, my daughter (ASD and non-verbal) still wore pulls-ups and showed zero interest in the potty.  Witnessing my frustration, our ABA therapists recommended their “Potty Training Boot Camp”.  Admittedly, I was skeptical but committed to the process.  In a matter of days, she caught on to the program. Now at 8 years old, my daughter has remained fully potty-trained (without regression).”

~ Laura H.

 

GS Helps More PPEC Children

The excellence of Great Strides Rehabilitation’s therapy staff has become well known throughout northeast Florida and beyond as the top therapy provider for Prescribed Pediatric Extended Care (PPEC) centers in the area.

PPECs are daycare for medically fragile children who can not attend typical daycares due to medical issues.  Here, registered nurses, licensed practical nurses, certified nursing assistants, partnering with Great Strides’ licensed speech, occupational, physical and behavioral therapists, care for children ages birth to 20 years of age who have a life-threatening illness, are medically fragile, medically complex or technology dependent to optimize the development of each child’s independence.

When Great Strides began working with All Kids Care in late September 2016 it marked a milestone of service to all PPECs in the Jacksonville area.  Great Strides is now continuing their partnership with All Kids Care at their newly built location on the Northside where they continue to offer a high standard of care providing a good curriculum that includes educating the parents in playing a role in teaching life skills.

 

 

Carrie Moon, Owner and Administrator of All Kids Care of North Jacksonville, left, and Katie Bishop, Great Strides Therapy Manager, discuss a new patient intake

 

 

Carrie Moon, RN, owner and manager of AKC, has been serving Jacksonville in the pediatrics field more than 22 years.  Her first 13 years, Moon worked at Wolfson Children’s Hospital as a pediatric nurse and then began providing pediatric home care establishing All Care Home Nursing Services in 2012.  Creating All Kids Care, first in Orange Park, and now on the Northside, it is her desire to provide this much-needed care to the underserved and remote areas such as Fernandina Beach and Yulee.  Their Orange Park facility is currently filled to capacity.

“My relationship with Great Strides has been nothing but wonderful since I contracted their therapeutic services at the Orange Park location when opened a year and a half ago,” said Moon.  “The kids have made incredible changes, blossoming into themselves, making my heart smile to see the positive differences that can be made when everyone works together as a team.”

Great Strides also provides therapeutic care to four other PPECs–CSI-Arlington, CSI- Cassatt, JumpStart Pediatrics located near Memorial Hospital in the Memorial HealthCare Plaza and Fletcher’s Tendercare.  Each PPEC has a dedicated Great Strides managing therapist as well as nurses, nurses’ aids and physical, occupational and speech therapists that work as a team to provide the most effective course of intervention for children.  Our goal is to partner with families to ensure the highest level of physical, developmental, and social growth that a child can possibly attain.

Great Strides Building Additional Rehab Facility in Orange Park

Because of Great Strides dedication to help all special needs children learn life-skills toward becoming independent and productive, especially those in more rural areas that do not have close access to the therapies they need, Great Strides is currently in the process of building a second rehabilitation clinic in Orange Park.  This is so they can provide care to an underserved population in the more rural areas of Orange Park, Middleburg and Keystone Heights, according to Great Strides Director, Dr. Jon Edenfield.

As the new facility is being built off of College Road and 220, they are providing services in a temporary location off of Blanding Boulevard and Bolton Road with ABA outpatient therapy, as well as serving patients in the home, community, and schools. “We are excited to begin offering occupation, physical, and speech therapies and growing as we move into the new office in the coming months,” said Chelsea
Nowack, BCBA/ABA Manager of the Orange Park Office.

Great Strides already began helping children in these areas last September through their partnership with All Kids Care of Orange Park, which marked a milestone of service to all PPECs in the Jacksonville area.

 

 

 

 

 

 

 

In the midst of setting up a temporary Orange Park office are: Angela Martin, BCBA,
left, Manager of the Orange Park Office Chelsea Nowack, BCBA/ABA, and an RBT/Practicum Student Jilltorra.

Meet our Staff Spotlight – Hilda Harrison

What initially drew you to choose a career helping improve the lives of children with disabilities?

Since childhood I “sensed” people’s feelings and attitudes, things about a person that weren’t verbally expressed. Psychology became my passion in college years, but I still was not totally satisfied. I met a pediatric Occupational Therapist whose influence and counsel were so significant that I changed majors, university, and professional course. OT became the bridge between psychology and the art and science for practical and functional interventions into a person’s daily life.

Have you been touch personally in this area?

You should ask how important is waking up every morning. For over 35 years as an Occupational Therapist, I look forward to each work day, to the discovery of children’s potentials, sharing with team members, learning from families, and challenged with each gift in which “problems” are often wrapped. With the support of owner Jon Edenfield, team work, and family involvement evidence occurs every day that miracles happen at GSR.

How long have you worked for Great Strides Rehab and in what capacity(ies)?

I have worked at GSR for 12 years, beginning when the owner had just 2 employees and a clinic about the size of one of our therapy rooms. I serve as staff OT within a team of about 50 professionals to include ABA, Occupational Therapy, Speech Pathology, Physical Therapy, Music Therapy, Nutrition, and administrative staff across settings to include public and private school systems, medically complex outpatient settings, and the GSR center-based private school and preschool. Watching GSR grow with such excellence over these years is beyond exciting.

Tell us about your history and career background.

I have been fortunate to work as an Occupational Therapist in many different types of settings to include university teaching hospitals providing therapy in both neonatal intensive care units (NICU) and pediatric intensive care units (PICU), a cerebral palsy rehab facility, childrens hospitals, school systems, and private practice. These facilities supported professional activities to include grant writing to procure NICU related NIDCAP staff training and a computer technology grant from Easter Seals. I taught Level II and Level I OT and OT Assistant fieldwork students for 20 years from which I probably learned more than I taught. I worked on multi-disciplinary medical teams to include ECMO ( based on a heart-lung bypass machine), a post heart transplant feeding program, neurology and orthopedic rhizotomy treatment team, and a radiology department swallow study team. I have published one national pediatric research paper on the play of children with disabilities and one state wide adult-related research paper on sensation restoration. I have presented papers at national and state conferences related to children’s head injury, juvenile rheumatoid arthritis, and fieldwork supervision. And last but not least, I have been fortunate to serve with distinguished colleagues lobbying for children’s healthcare.

Inform us on your educational accomplishments: Degrees earned, Certifications, any related Organization memberships?

Children and families needs are multi-dimensional as it is for all of our lives. I am fortunate to have received post-professional certifications related to my passion with Sensory Integration, Neuro-Developmental Training (NDT), and multiple trainings with pediatric feeding and swallowing. As with an iceberg, only 15% is visible above water and 85% is underwater unseen. These advanced trainings have helped give insight into the 85% of what in not seen in children on first look, especially when combined with a GSR team approach.

 What do you enjoy most about working at Great Strides?

Getting to know and meaningfully engage with families and children is a profound privilege at GSR. The depth of family engagement within a team approach at GSR surpasses any work setting in which I have worked.

 What is one fun fact most people don’t know about you or something that makes you smile?

Balance with work, play, rest, and leisure is a basic tenet of Occupational Therapy. When not working, I ride my Harley Davidson Sportster, scuba dive, or just work in the yard and garden. My husband Wayne Powell, who is an electrical engineer by profession, and I were married underwater 20 years ago, so we often combine a motorcycle and scuba diving trip in the Florida Keys. We just bought an RV and made our first cross country trip to Arizona and Utah, motorcycles in tow.

 What is your favorite inspirational quote or motto?

I have a few years “under my belt” and more than one guiding quote. But for today, here goes a blended version: Live well, laugh often and insanely, love truly, live in prayer, and forgive quickly. And work like you don’t need the money, love like you have never been hurt, and dance like no one is watching. But a favorite is Matthew 19:26: “With God all things are possible.”

 

 

Finding Common Ground with the Insurer

Finding Common Ground with the Insurer
originally published in the (Florida Assoc of Behavior Analysts) FABA Observer Summer 2017
By Matt Briere-Saltis

Insurance Companies and ABA providers often find themselves in an ostensibly unenviable relationship. One side is seeking to mitigate their financial investment while the other attempts to mitigate the effects of an often lifelong, debilitating disorder. And yet the two coexist every day, discussing authorizations for ABA treatment, often debating the question of medical necessity.

Every funding source of ABA has a slightly nuanced understanding of what is medically necessary. Some definitions are shaped by very informed and sincere men and women with appropriate medical, psychological, educational, and behavior analytic experience. Some, unfortunately, are shaped by borrowed legal precedent and misguided priorities. And most fall somewhere in the middle, generally accepting that ABA is appropriate to treat deficits with Activities of Daily Living, Communication, Problem Behavior, Social Skills, Language Building, etc.. Some will require that no educational targets be set, others will deny coverage for vocational skills training, and others still will not fund in the absence of notable problem behavior.

It is important to be prepared to experience the full gamut of definitions when you are interacting with funding sources, which often are private insurance agencies. Insurance agencies typically can give some information electronically or over the phone regarding general policies on what they define as medically necessary for ABA therapy. But another funding source that’s important to consider is the self-pay family. They may have a different understanding of what is medically necessary, and it may be a vital step for you to have the same type of discussion regarding ethical standards of treatment with a parent as you might with an insurance representative.

The discovery of common ground also involves having the right documentation. Again most insurance providers that fund a large number of ABA plans will have designated forms, and information that they request. There may also be requests for additional information after the original forms have been submitted. The individual that is able to submit this documentation in a timely and accurate manner will always have a leg up.

Ultimately, success when communicating with insurers comes down to pleasant persistence. And that often manifests as plenty of phone calls, emails, faxes, and face palms. But communication is important, and it can sometimes be tempting to multitask while communicating, especially when there is graphing to be done. But it can also detract from the conversation. Being prepared and being present will likely reduce the number of future phone calls. Being pleasant is just a good thing to shoot for.

Matt Briere-Saltis is a Board Certified Behavior Analyst (BCBA), certified PCM instructor, and certified PCIT therapist. Matt has served the last two years as the Clinical Program Manager for Great Strides’ Outpatient department. The Outpatient department serves clients out in the community, in both public and private schools as well as home based programs. Matt has worked in the field of Behavioral Health for a little over a decade now, having worked in hospital settings, group homes, clinics, and as an expert witness. In addition to providing training and supervision to staff members at Great Stride, and administrative support to the Great Strides Leadership team, Matt has written and been interviewed for multiple publications, including the FABA Observer.

Did You Know? ABA therapy for Down Syndrome Covered by Insurance
   Did you know that the Florida Senate passed a House Bill in March of 2016 to require insurance companies to pay for ABA therapy for individuals with Down Syndrome to the same degree as for individuals with Autism? Most insurance plans began including this coverage at the start of their plan year, which for many was January 2017. This means that your child could receive 20-30 hours per week of interventions to improve your child’s and family’s quality of life. Have a young child? Contact us about our Early Intervention Preschool Program and to find out more on insurance coverage for ABA therapy!

 

Great Strides Start’s PE Program

The Great Strides School PE program was trialed two years ago by taking the advanced learners to Chuck Rogers’ park to learn and eventually play a modified soccer game with staff. We now offer PE every school day in each school classroom facilitated by a classroom PE Lead and supervised by the school’s Physical Therapist to assist with any physical accommodations needed for the students.

This program was developed by Rebecca Kilgore, PT, DPT, BCaBA, a licensed physical therapist and board certified assistance behavior analyst, who explains,

“The goal for our school’s PE program is to assist our students in learning the fundamental building blocks for play, sports, coordination, and cardio/muscle endurance all while having fun and interacting with staff and peers.”

 

Why PE is Important for Kids with Autism
   Physically active children have better circulation, muscle tone and maintain a healthy weight. While physical activity is healthy for all children, goes even farther with autistic children. Autistic children experience an increased attention span after aerobic activity. Physical education with autistic children is also effective at controlling some inappropriate behaviors associated with autism, according to John O’Connor in the article “Understanding Autism” published in Palestra.

Autistic children experience difficulties in interpersonal relationships that manifest in avoiding affection, play or participation in physical activities, avoiding eye contact and being unable to relate normally to other people and situations. Including autistic children in physical education is complicated by autistic children’s inability to cope with normal tactile stimuli. The result is that many autistic children possess low levels of physical fitness.

Exercise and sports may help to prevent problem behavior such as aggression, and it may help socialization in autistic children, according to the Association For Science In Autism Treatment. Autistic children are not typically motivated to play in games with other children and may engage in inappropriate behavior because of sensory over-stimulation. Instructional programs that include only autistic children can have similar challenges as with mixed classes to include inappropriate behaviors, reluctance to participate, stimulus distractions, short attention span and abrupt outbursts or regression during exercise.

Creative techniques are needed to increase children with disabilities’ participation in physical activities which is why it is so important to have your child working with the professional technicians at Great Strides.

 

Great Strides Super Hero: Kile Keene

Five Year ABA Student Plays Cello in Jr Symphony!
     By Christina Swanson

When the Jacksonville Symphony Youth Orchestra (JSYO) plays its first concert of the season in November, one of Great Strides youngsters will be performing at their first concert, too, as part of the Foundations Strings ensemble. At only eight years old, Kile Keene is another Great Stride super hero demonstrating how consistent hard work by “Team Kile” — his therapists and music teacher — can make all the difference in achieving developmental milestones.

Mary Westwood, Kile’s behavior therapist, has been working with Kile, both at his school and at the GS clinic, since he was three years old. This special relationship began when Kile first attended a special needs pre-kindergarten class at a private school. Westwood worked with Kile, a caring youngster with autism, helping him learn basic behavioral skills so he could eventually start attending his neighborhood’s public school, Hickory Creek Elementary, by the time he entered the first grade.

“Mary has been instrumental in integrating Kile into a classroom setting and his being able to go to public school,” said Windy Keene, Kile’s mom. “She instructs Kile on many skills, including social and academic, both with his teacher in the classroom and at the GS clinic, provides input to Kile’s IEP goals, and attends IEP meetings with me, all helping Kile to be successful.”

As Kile advances in such behaviors as interacting with his peers, Westwood has less classroom involvement in now his third grade year. She checks on him during recess, and works at the clinic with him for four hours per week, some of that one-on-one promoting motor planning skills to help the body and brain to work together in breaking down the steps involved in accomplishing specific tasks. Along with Westwood, Team Kile also includes Great Strides occupational, speech and physical therapists who help build upon his skills and accomplishments.

When Kile was three years old, his mom discovered he has a perfect pitch so they started him on piano lessons at the Orchard Kingdom. This was no easy task due to children on the autism spectrum having motor difficulties (where, in this case, the brain doesn’t cooperate in telling his fingers to press the right keys) involving more hands-on by both Westwood and mom.

Two years ago, Kile chose to add learning how to play the cello, diligently taking both piano and cello lessons several times a week. This has meant additional challenges in motor skills with Westwood working on such activities as how to pack and unpack his cello bag. When Kile’s cello teacher suggested him trying out for the JSYO this summer, he also worked with Kile on musical expectation for tryouts so he’d be ready.

String instruments are said to be the most difficult of musical instruments to learn and as mom noted, “It takes a lot for his brain to compute for even something as seemingly simple as holding the instrument.” If you google “learning to play the cello” you’ll learn that many accomplished musicians state that the cello is as “very hard to play as it is very easy to be out of tune” because the Cello has a very long fingerboard. This means it takes lots of practice to learn to find the right spot while requiring the player to focus both arms on the correct bowing and fingering, and requires learning to read music for the only instrument that uses three clefs — bass, treble, and tenor.

So, choosing to play the cello and winning a spot on the JSYO are no small feats! Kile and the JSYO’s first season performance is the Fall Concert on November 19 at the Jacoby Symphony Hall of the Florida Times Union Center for the Performing Arts in downtown Jacksonville.

Another huge accomplishment for Kile this summer was learning how to independently ride his bike. Kile’s GS physical therapist since he was four, John Kirkland, had been working with Kile for many months on balancing on his bike without training wheels and felt an added “push” might be just the boost Kile needed to make it happen. So, Kirkland suggested Kile attend “iCan Bike,” a bike camp for special needs children affiliated with the international nonprofit “iCan Shine.” This year, the five-day camp was offered in Florida in Orlando the first week of August, and was the perfect boost Kile needed to start riding independently and work on his social skills with new friends.

“Through the therapies at Great Strides, Kile is opening up and more willing to interact with his peers, in large part to his GS social skills group where they learn to listen and respond appropriately to peer interaction,” explained Keene.

“This has been a wonderful year of learning for Kile as he has been able to make friends and invite classmates over to ride bikes and swim together,” said Keene. “I am thankful to be around such great people and a talented team of therapists who are constantly on board promoting “Team Kile” — he’s a great kid who works very hard.”

 

— Here’s More About iCan Bike Camp

iCan Bike camp is a part of the international nonprofit iCan Shine that collaborates with area organizations to provide 100, five-day iCan Bike camps throughout the US and Canada each year. Their goal is to help children with disabilities (specifically geared to Down syndrome and autism) experience the joy of independently riding a conventional two-wheel bike.

For more information about the next bike camp in Florida, contact Camille Gardner at camille.gardiner@dsfflorida.org or call 407-760-9395.

Another Great Strides Advantage

Dr. Rebecca Kilgore, PT, DPT, BCaBA – both a licensed physical therapist and board
certified assistance behavior analyst – and why that’s EXCEPTIONAL  
By Christina Swanson

As a child grows and learns reaching typical milestones, it’s easy to take everyday things for granted, like putting on closed-toed shoes or interacting with peers playing a simple game. Unless you’re the parent of a child on the autism spectrum or other special need. Then something as simple as walking on the grass can be difficult for a child with sensory aversion as the grass can feel to them like spiders crawling on their ankles.

Imagine the heart-felt joy for family members to watch their child with disabilities play an organized sport, albeit on a reduced scale, knowing it meant overcoming so many challenges and learning enough social, verbal, physical and gross motor skills to be part of a team. At Great Strides Rehabilitation Clinic and School in Mandarin, such an accomplishment came true for many of their 13 to 17 year-old-students in large part to the unique talents and skill sets of Dr. Rebecca Kilgore, PT, DPT, BCaBA, who is both a licensed physical therapist and board certified assistance behavior analyst.

So how is this unique and why is having both specialties an advantage to such children and their parents? Whether physical, speech, or occupational, a therapist’s studies and internships are on a set course that differs from a certified behaviorist’s path. Yet many children with special needs, require help in all of these disciplines to reach developmental targets. Let’s say a patient has behavior issues and throws a ball at the physical therapist rather than doing a particular exercise with it. Because the physical therapist deals with body improvements, they would not be trained in how to redirect this aggression. With both disciplines needed for the child to improve, it’s more efficient and targeted to have one person be able to immediately teach what’s needed. Also, the act of physical therapy itself is not usually fun since stretching areas can hurt, so a physical therapist who is also behavioral certified can help the child stay motivated to finish the session.

Kilgore has learned through her own experience that combining athletics with behavior therapy is a winning combination toward helping kids with special needs advance. She also focuses on teaching parents how to better set up their environments to help develop their children as they grow.  “This additional degree has allowed me to work with parents on behaviors they would like to decrease to feel comfortable taking their kids into the community, while improving understanding of how exercise tolerance or even severe physical disabilities can be overcome or functionally assisted so their child can participate in everyday activities,” explained Kilgore.

When Kilgore, along with other Great Stride specialists, set up and prepared students for an “in-house” soccer team two years ago, it was truly a huge triumph in every discipline from social skills (sharing the ball, winning/loosing, congratulating and cheering on peers), to teaching step-by-step motor imitation and physical skills down to the very act of how to kick the ball. They worked on attention span and remaining engaged as well as their physical capacity for the game.

“I believe if a child can’t physically keep up with their friends or kids their age, then they are left behind which makes developing social skills nearly impossible,” said Kilgore. “Typically, when kids are difficult to manage, parents keep them home and limit their exposure to other kids, which, of course, impacts both physical and social capacities. Athletics is a great way to tackle and overcome all of this.”

The kids wore neon green jerseys that they designed themselves with their nicknames printed on the back. Many had therapy to get them to wear the jersey, sneakers and kick the ball on grass. So when the parents got to see their child play as a team for the first time it was a monumental achievement that gave them hope in their child’s potential.

“I am most passionate about how physical capabilities affects behavior and how behavior effects physical capabilities,” said Kilgore. When she joined Great Strides in 2011 as a behavioral instructor with a bachelor’s in psychology, she soon became a Board Certified assistance Behavior Analyst (BCaBA) lead running classrooms and teaching other assistants while going to college full time toward earning her behavior analyst certification. During her doctorial studies, which she completed in May 2017 from Nova Southeastern University in Tampa, Fla., Kilgore evaluated and treated patients with various orthopedic and developmental/neurological conditions as well as postsurgical and medically fragile oncology patients, incorporating a range of therapy mediums including aquatic therapy and youth sports.

With Great Strides known for its innovative approaches, from karate classes to vocational opportunities with local businesses, Kilgore is excited about presently creating a Physical Ed program for the Great Strides’ school that combines physical and behavioral therapy as basic PE goals for the school’s kids ages five through 21. “All kids with disabilities, especially those with autism, need to experience social contact where they learn how to relate to their peers and vice-versa,” said Kilgore. “Through PE, these kids will get stronger, coordinated and learn the steps they are missing to be able to interact with other kids on the playground.”

If Kilgore sounds passionate about helping children with disabilities learn the skills needed to have a productive life and make their parents happy as they improve, well, yes, it’s her life purpose. And she doesn’t back down. That’s because she knows what it’s like to overcome a handicap herself. And that the seemingly impossible can happen when you have someone helping who refuses to give up—which for Kilgore was her dad who instilled in her that the things in life that are worth doing aren’t usually easy.

As a youngster, her arm was so badly broken from a horse-riding accident that doctors wanted to amputate.   Her dad refused and after the casts were removed and much PT, doctors said she’d never extend her elbow. But her dad had other plans, enrolled her in softball and worked on her swing and throw for a year with her ultimately becoming a good softball player.

 “This experience taught me that just because something bad happens it doesn’t have to define you; and just because someone says you have to do something one way to get better, if it’s not working, try something else,” explained Kilgore. “My kids at Great Strides inspire me everyday to be creative. You can’t work from a preplanned list of exercises with these kiddos because they need more than that. And their families also need more than that.”

“So many kids out there that seem to be discouraged because people only see the different outward behaviors rather than look for the good in these children,” said Kilgore. “I want to work with getting them past that, teach them the skills to have a better life and participate in society and be happy.” If you’d like to have Dr. Kilgore work with your child, contact Great Strides at (904) 886-3228 or info@greatstridesrehab.com.

 

                                               

 

 

 

Simply the BEST

Dr. Jon Edenfield Earns University of St. Augustine’s Health Sciences 20th Anniversary Occupational Therapy Professional Program Award

By Christina Swanson

Out of 1,400 occupational therapy graduates from the University of St. Augustine for Health Science’s (USAHS) Occupational Therapy (OT) Program — 20 years’ worth — one graduate stood out from all the rest. DR. JON EDENFIELD OTD, OTR/L, founder and director of Great Strides Rehabilitation Center in Mandarin, was presented with the 20th Anniversary Occupational Therapy Professional Award from the university’s Board of Directors for his outstanding commitment to the occupational therapy profession in leadership, advocacy, service, scholarship, mentorship and innovation.

Edenfield and his family were flown out to Carlsbad, CA, to receive this one-time award in celebration of the 20th anniversary of occupational therapy at the university, and the 100th anniversary of occupational therapy as a profession.

After earning his undergraduate degree in OT at the University of Florida, Edenfield attended and completed his masters at USAHS when the OT program was in its infancy, graduating in 2000 where he was presented with the outstanding OT student award. After working with special needs children he saw that most require multiple types of therapies with specialists typically at different locations. That’s when Edenfield created Great Strides — a comprehensive rehabilitation center for children – providing unique interdisciplinary teams of specialists at one rehab and special education facility so parents can meet their child’s varied needs in one location. He also earned his doctorate from USAHS, researching his capstone project for three years, titled “Pilot Study: The physiological effects of animal assisted therapy on children with autism spectrum disorder.”

This pilot study was based on working with Nantuckett, after he completed the year-long process of acquiring and learning how to work with a service dog. “We came to the conclusion that having children interact with the dog before their sessions, whether therapy or educational, meant they would be more alert and receptive to learning and communicate and behave better,” said Edenfield.

In only 13 years, Great Strides has grown from a one-room space to a 19,000 square foot new building employing 85 specialists and assistants, helping children with disabilities from birth to 21-years-old. Great Strides also has after-school programs with speech, behavior and music therapies, with specialists also working with medically fragile daycares and schools.

“My biggest triumph is to take a family that has just found out that their child has been diagnosed with a disability, and give them a road map of help so they know that it is going to be OK,” said Edenfield. “Their life may be different than their original paradigm but they and their child are still going to have a good life.”

As Edenfield approached the podium, the USAHS presenter praised him for “upholding the legacy of the university with his innovative and broad range of programs helping special needs children.” The award ceremony also honored exceptional USAHS faculty.

 

Prescribed Pediatric Extended Care

Jumpstart Pediatrics

By Christina Swanson

I spoke with Joni Hughes who is recent owner of a new PPEC in town “Jumpstart Pediatrics”. PPEC stands for Prescribed Pediatric Extended Care and is a daycare option for medically fragile children who would not be appropriate for typical daycare due to medical issues. In the past, parents working or in school often kept medically fragile children home with round the clock nursing care. Therapy was provided in outpatient locations or through Early Steps around the parent’s schedule.   Now more parents are learning about PPECs as an option for their child, and there are many more PPEC choices in Jacksonville. PPECs are staffed by skilled nurses who medically care for the children. Therapy is provided “in house” and includes PT, OT and ST as well as vision and hospital homebound schooling options. This cuts down on multiple additional appointments for the parents during the week and often fits their school/ work schedule better. Transportation is provided if needed, with buses or vans picking up the children in the morning and transporting them home. Medical personnel accompany the children on the bus rides to ensure their safety. Great Strides began staffing therapists at PPECs about 10 years ago, and has steadily grown with these companies. Joni responded to several questions about her experiences in this medical business.

What is your background medically?

“30 years of nursing, 20 of that in pediatrics, and most in critical care or home health. I have been involved in PPECs for 15 years.”

 

How did you decide to open a PPEC?

“I decided to open one because I wanted to produce a program that had more supportive services for the parents and more developmental and academic services for children. “I wanted a program that would offer children a variety of developmental options. People tend to forget that children who are medically complex can progress and should be offered the maximum amount of developmental opportunities available.”  

 

How long has Jumpstart been open and how many children can it serve?

 “It’s been open since December of 2016 and we are can service 50 children here in the center. We are growing very quickly and we happy with how the community has received the center and services we provide.”

 

What services does GSR provide for your PPEC?

Physical, occupational and speech therapy. When available, Jon has also sent a music therapist regularly which the children love and respond to significantly.”

 

How long have you been contracting with Jon Edenfield and GSR?

“I’ve worked with Jon for over 10 years providing therapeutic services to children in PPECs.”

 

What were you specifically wanting to do with Jumpstart to “set it apart?”

“I wanted it to be a bright, airy and kid friendly environment that would stimulate the children’s growth and development as well as provide for their medical needs. I wanted it to be a place where parents felt comfortable leaving their children for the day.”

 

 What is the mission of your program?

“At JumpStart Pediatrics, we strive to provide compassionate, quality care in a professional, caring and friendly environment. Our goal is to partner with your family to ensure the highest level of physical, developmental and social growth your child can possible attain. We are committed to help make a difference in your child’s overall health and well-being as we also strive to make a difference in the community we serve.”

 

Tell me about your family, and what you like to do in your spare time.

“I’ve been married for 30 years, have 4 children and 4 beautiful grandchildren. Family is very important to me.

I like spending time with my husband, children and grandchildren, reading, volunteering in the community, and going to the beach.”