When Kodi Lee won America’s Got Talent this past summer as a singer and piano player, it was a victory that went beyond rewarding incredible talent and winning a million dollars and the life-changing opportunity of being show-cased in Las Vegas. It was a triumph for everyone who ever doubted their abilities or gave up on themselves because no one would give them a chance. Even more, it proved that all of us — even a child that is blind and non-verbal on the autism spectrum (ASD) can excel with the right guidance and encouragement.
Lee’s win also showed the power of music and music therapy in particular, a modality that Great Strides Rehabilitation has been offering for several years now. Being a new year, it’s another tool parents and practitioners may want to start including as part of their child’s journey to independence.
What is Music Therapy?
Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.
According to the American Music Therapy Association (AMTA), music therapy “is a well-established allied health profession that uses music therapeutically to address behavioral, social, psychological, communicative, physical, sensory-motor, and/or cognitive functioning. Because it is a powerful and non-threatening medium, unique outcomes are possible.
Research supports its effectiveness in overall physical rehabilitation, increasing people’s motivation to become engaged in their treatment, providing emotional support for clients and their families, and an outlet for expression of feelings.
As Lee demonstrated, and several talented Great Strides students have also shown, many youth with ASD have innate musical talents with music therapy opening this world for the student/patient.
How Does Music Therapy Differ from Entertaining?
A board-certified Music Therapist must complete an AMTA approved university program, complete 1200 hours in a clinical setting (minimum of 900 hours internship), and pass the board certification exam. This includes demonstrating competency in playing guitar, piano, percussion, and singing.
Because music therapy is individualized and client-centered, during a session, the therapist and their musical abilities is not the focus; instead the focus is on each child’s goals through facilitating their musical and non-musical development. In turn, focusing on strengths addresses each individual’s areas of need.
New Music Therapist’s Journey Offers Many Benefits to Your Child’s Learning
Music Therapist Karen Howell’s Journey and Background
Great Strides Rehab is proud to welcome Music Therapist Karen Howell, MA, LPMT, MT-BC, to our staff of professionals, who joined our team last summer. Actually, parents and students got to know Howell months earlier during her internship as a practicum student working with former Music Therapist Gretchen Mitchell. Now, as a recent employee, Howell sees children individually and within groups at all three clinic locations. Like some therapists who chose to help children with disabilities, her journey to music therapy began with a personal encounter that happened to occur as a high school student.
“When I was in high school, I had a friend with high-functioning autism. I noticed that she communicated with others most easily in a musical setting as she could rarely make eye contact or answer questions unless she was in band class,” explained Howell. “Though she was able to verbally communicate, she struggled with the social skills that are so necessary in high school. Wondering how could she be such a different person in the band room than other times at school is what peaked my interest in music therapy. I saw the joy in my friend’s eyes when she played the flute, and the comfort and peace she felt as she played. I not only wanted to learn more about autism, but also how music helps treat children at all stages of development.”
Howell explains that her educational journey may have been different from other music therapists as she fell in love with a college that had a strong music program but no music therapy department. As a result, she decided to first double major in music and psychology, graduating from Brevard College in North Carolina with a B.A. in Music and B.A. in Psychology, followed by a M.A. in Psychology from Stony Brook University on Long Island. Next, she earned a Music Therapy Equivalency degree from Saint Mary-of-the-Woods College in Terre Haute, Indiana.
“These educational choices have made me the musically and psychologically knowledgeable therapist that I am today,” said Howell.
Howell incorporates eight different methods of therapy as well as her advanced psychology and musical training.
These eight main methods include: Nordoff-Robbins, Orff, Bonny Guided Imagery, Dalcroze, Kodaly, Community, Analytical and Neurologic Music Therapy. Emotional, psychological, and physical needs may be met through each of the methods. Howell states she uses the methods of Nordoff-Robbins in each session and also includes components of each method. Nordoff-Robbins Music Therapy features spontaneous improvisation that is inspired by each child. By using music to highlight the child’s responses in the moment, this approach is highly effective in gathering the attention and validating the responses of each child.
“Children are able to express themselves through songwriting, instrument playing, listening to, and singing familiar songs,” said Howell.
With communication being such an integral function that is impacted in autism, Music Therapy is beneficial in fostering non-verbal communication and expression that are accessible whether a child is able to verbalize or not. Music Therapy is also used to promote psychological coping skills. Other cognitive skills that transfer from Music Therapy sessions to the classroom environment include sequencing, decision-making, and problem-solving skills and can be used alongside OT and PT to improve target motor movements.
Offered Classes and Their Focus
Hand bell ensemble: (45 min.) (early elementary)
Group members will play an assortment of preferred songs by each selecting a hand bell of their choice. Color-coded teaching and conducting will be the avenue for growth and development of this ensemble. The motor skills targeted for this group are more based on fine-motor abilities. This ensemble will address goals of increased impulse control, hand-eye coordination, fine motor skills, attention, sustained eye contact, following directions, turn taking, and sequencing skills.
Ukulele group: (1 hr.) (late elementary)
The ukulele has become a popular instrument of choice for musicians aged from early childhood to late adulthood! This portable instrument will be used in a group session to further develop fine motor skills and coordination. Listening to other group members will be a large focus of this group that is designed to introduce a collection of familiar songs on the ukulele. This ensemble will address goals of fine motor skills, attention, synchronization, and self-expression.
Songwriting Group: (1 hr.) (middle and high school level)
This group will focus on creativity and self-expression. The music therapist will begin the course with mad-lib style songwriting and progress to the point that each member will write and perform their own song, as well as contributing to group formulated songs. This ensemble will address goals of enhanced self-expression, self-esteem, coping skills, and complex thinking.
Psychological/emotional development group: (1 hr.)
Through use of various music therapy techniques and interventions, members will learn ways to cope with everyday problems. Communication will be a large emphasis of this group as members learn communication skills within group that will transfer to the outside setting. Examples of group interventions include: songwriting, lyric analysis, instrument-playing, and singing. Goals that will be addressed include socialization, communication, mood regulation, coping skill development, self-expression, conflict resolution, self-esteem improvement, stress management, and increased motivation.
Family support group: (1 hr.)
During these sessions, family members of those with ASD or any other developmental, psychiatric, or communication disorders will assemble to share experiences with each other about day-to-day challenges associated with living with loved ones with these disorders. Self-expression and group encouragement will be the primary focus of this ensemble. An assortment of different interventions will be used to encourage members to express themselves through music. Goals addressed include stress management, acceptance, validation, independence, conflict resolution, coping skills, group cohesion, and a provided sense of accomplishment and hope.
Locations Served with Music Therapist Karen
All Kids North and Orange Park Jumpstart Fletchers Tender Care North and South Great Strides Rehab: Orange Park Mandarin and Arlington
Call the main number at (904) 866-3228 to set up an appointment at any location/ day/time depending on availability.
Meet our newest Bilingual Physical Therapist Dr. Beverly Reyes.
• Primary GSR location/setting?Orange Park & PRN PPECs
•What do you love most about being a PT?Love to see the kids to thrive and become independent and meet their goals.
• What is your favorite or proudest moment as a PT?When the kids achieve their milestones (i.e. crawling, walking, riding a bike independently) .• What is your go-to therapeutic activity or resource? Music- dance to promote balance and coordination, balance beams and jumps.
• What do you help children improve? We work on functional mobility like walking, stairs, getting in and out of chairs, safety on the playground, strengthening to improve balance, coordination to help them to interact with peers through play.
•Anything you want to add or have ppl know about you?I am fully bilingual and love to be able to learn and share about different cultures including food!
Blue Halloween buckets are meant to alert candy givers that a child has autism. This Jacksonville company is giving them out for free. Author: First Coast News Staff Published: 11:03 AM EDT October 21, 2019 Updated: 11:25 AM EDT October 21, 2019
One Jacksonville company is giving away free blue Halloween buckets as part of a national movement advocating for inclusion.
The pumpkins are intended to be a subtle and dignified way to alert others that a child has autism.
Great Strides Rehabilitation Inc. will be giving out the blue pumpkins to children who are on the autism spectrum (or suffer from other developmental disabilities) starting on Monday.
Families can pick up a free blue pumpkin at Great Strides Rehabilitation’s Mandarin and Doctor’s Lake offices by visiting the reception desk. You can call the office prior to coming to make sure they still have pumpkins available at 904-886-3228.
The company will also be hosting a “Practice Trick or Treat” this week designed to help children with Autism and other developmental disabilities gain exposure to activities that typically occur on Halloween.
Families of children with Autism and other developmental disabilities are welcome to attend the “Practice Trick or Treat” on Thursday from 5:30 p.m. to 7 p.m. at their Mandarin Location, 12276 San Jose Blvd. Suite 508.
Created by the Mom of a Child with Disabilities and Long-Time GS Patient
There’s a new “hot spot” in town that brings together children of all abilities in their own special play gym. It’s the adaptable sensory gym, Sensory Towne, opened in July, which helps children with balance, social skills, body awareness and overall development of the senses.
The students and patients at Great Strides Rehab, along with all the children the therapists work with at various fragile care centers, were recently treated to a fun night there by Dr. Edenfield, Executive Director, to check it all out. More than 25 kids, from ages three to teenagers, and their parents participated in this “patient appreciation night” swinging, sliding, playing games on interactive floors and other adventures.
Such a place did not exist in Northeast Florida and beyond before Kimberly Belzer, a mom of a son with disabilities, became determined to create her decade-long dream of a place where all abilities, whether “typical” or “special needs,” could “fit-in” and play together.
Belzer, a single parent to a multi-handicapped son, now age 14, was born with the genetic disorder Hydrocephalus, is autistic, nonverbal and has survived 16 surgeries and cancer. Brandon, and kids like him, require a lot of sensory input — spinning, rocking, calming lights, vibration, squeezing, and touching — to function during the day. Since Brandon was four, his mom has searched for, and not been able to find, an inclusive play space for children of varying needs that Brandon could enjoy.
Determined to create such an inclusive play-space, Belzer has spent years researching the best sensory input activities and equipment. She also credits Dr. Edenfield’s advice and support in helping make Sensory Towne a reality.
Dr. Edenfield and his therapists have been working with Brandon since he was two months old. This was even before Great Strides Rehab was created, when Dr. Edenfield was working as an occupational therapist at Wolfson’s Children’s Hospital. Great Strides therapists Hanna and John Kirkland have worked with Brandon for close to a decade on many everyday skills from something as simple as pointing to learning how to feed himself and walk up steps.
“Great Strides has helped so much with Brandon’s independence so that now he can dress himself, select his own games on the I-pad, open the fridge and drawers, and get in and out of the car without assistance,” said Belzer. “They are highly caring people who will do anything to help you with your child’s needs, such as when Hanna and her husband came to my home and re-engineered Brandon’s bidet so he could push the button without turning around. “
And now Sensory Towne helps children with special needs in their development while having fun with most activities at wheel-chair level. There’s a sensory house, rolling slide, foam pits, a tactile library, motion-sensored interactive game floor, a chill spa (calming room) with vibrating bubble tubes, fiber optics and ocean sounds, rock walls and swings that spin, let a child lay-down, or allow multiple children for social interaction. There’s also an adult size changing table in the bathroom for parents that have older special needs children, and a sensory store to purchase unique sensory items.
“Since opening, we have had children of all capabilities come to play and it has been a beautiful thing to see,” said Belzer. “Sensory Towne is about kids playing together and learning about one another in the same space.”
Classes are now being formed for kids dance and yoga, music and movement, and interactive story-time. Check out listed schedules by going to www.sensorytowne.com or see all the fun on Facebook. Sensory Towne is located in the Centurion Square Shopping Center on the corner of Baymeadows Road and Philllips Highway.
“If there is something you’d like for your child and we don’t have it, tell us about it and we will try to get it,” said Belzer.
Emma picked up a ruffled pink blouse from the stack of clothes waiting to be put out for sale, placing it on a hanger. Next, she grabbed a T-shirt and hung that one up with the other blouse, carefully making sure it was placed on the rack with the girls’ shirts. Dr. Edenfield praised her as they continued to sort and hang clothes together.
Once-a-week, Dr. Jon takes Emma to Spectrum Thrift Store on State Road 13, a special thrift store that encourages teens and young adults on the Autism spectrum and with other developmental disabilities to volunteer and possibly be employed at the store. Opened in January 2018, such a store has been a dream for mom Alisa Tillman who both enjoys collecting items and refurbishing used furniture and has an Autistic son that she wants to teach business skills and ensure he has a future career. She is accomplishing both by creating Spectrum Thrift Store, and, in the process, has also helped close to a hundred other children so far from ages 16 to 23.
Dr. Jon brings Emma to increase her skills and provide social interaction, another way of encouraging her growth into more independence. And just like with Dr. Jon, many other kids with development disabilities, whether from another therapy center, The ARC Jacksonville, Reach Academy or UNF’s THRIVE program, come to the store with a job coach or occupational therapist for on-the-job training to qualify for a future job. These are not counting the students with the Bright Futures Scholarship Program that volunteer with a “buddy” to put in their required community service hours.
Although wanting to provide an opportunity for her son, Lucas, “in case no one else did for him,” Tillman has also done that for others like two Reach Academy students Ethan Anderson and Ian McFather who are employed part-time at the store. “It just inspires me that I got the job,” Ethan Anderson, 16, said. Of the 30 students from ARC that have volunteered, Tillman boasts that seven have gone on to get jobs in other businesses and five are now working at Spectrum.
What’s even more inspiring is that out of the four students from UNF’s THRIVE program that has come to Spectrum, one keeps their accounting books and does their payroll during the summer, (you can see Carter Talbert presenting Tillman with her check on their Facebook page), while student Matthew Campbell set-up and maintains Spectrum’s electronics.
You can check out the bargains while helping a worthy cause any day of the week with Spectrum open Monday through Friday from 10 a.m. to 6:30 p.m., Saturday from 9 a.m. to 6:30 p.m. and Sunday from 11:30 a.m. to 5 p.m. And say hello to Dr. Jon and Emma as they make a fun task of learning some important marketing skills.
The store is open every day during the following hours: Monday through Friday: 10 a.m. – 6:30 p.m. Saturday: 9 a.m. – 6:30 p.m. Sunday: 11:30 a.m. – 5 p.m.
Just six days before Christmas, Maleah has a family to call her own. The Fennell family is adopting the little girl after she was abandoned at a hospital by her biological mother.
Christmas may be a week away, but Wednesday is the morning that several families have been waiting for all year long. That’s because Judge Gooding will be presiding over multiple adoptions at the Duval County Courthouse.
From the way little Maleah clings to Alijray Fennell’s arm, it’s hard to believe she’s only been living with him and his wife, Staci, since August.
Maleah is just 6 years old and has what is known as DiGeorge syndrome. She struggles to crawl and speak and she’s fed through a gastrostomy tube. But caring for children with special needs isn’t new to Fennells, Staci is a CNA at All Kids Care of North Jacksonville. Her husband owns Al’s Kitchen and also is a driver for children with physical and mental disabilities.
In March, they got a call that Maleah had been abandoned by her biological mother while she was in the hospital and they jumped at the opportunity to help.
“He (Aljiray) was like who do we need to call? He was like ready right then, I said I don’t know but we will make some phone calls today,” says Staci Sessions-Fennell.
From their first doctor’s appointment in July, to finally being able to bring Maleah into their home in August, they say it has been incredible.
“This child I never had personally looks at me as a mother and looks at him as Dad and it’s just amazing how it happens,” says Staci with tears in her eyes.
The Fennells wanted to make it permanent, so adoption coordinators Kinsey Whyte and Rebecca Margulies from Jewish Family and Community Services helped them along the way and were also overjoyed by Maleah’s progression.
“It is a hard job and sometimes it is really hard to see what happens,’ tells Rebecca Margulies with Jewish Family and Community Services “But then we get to do stuff like this and Staci was saying how far she (Maleah) has come and she really has: physically, developmentally and emotionally. It’s really fantastic to watch.”
Though they are already a family, they can’t wait to make it official!
“Yeah, it was meant to be!” laughs Staci.
Other families like Yaacov and Erin Petscher have been waiting for a while to officially add their adopted son Teddy into their family.
“A complete stranger sent a picture of him and asked if we knew anyone who was looking to adopt someone like him and we fell in love,” Erin Petscher said.
“It’s the best gift ever because we hoped it would be by Christmas, it looked like it would be in January so it’s a special Christmas surprise he’s a part of our family with our last name and everything,” Petscher added.
It’s a gift that Judge David Gooding has given to families for over a decade. Gooding launched the Home for the Holidays event in 2004.
“We all know that a permanent family is better than the best foster care systsem in the world. We see children transition from foster care and into their families, and I’ll hear back year after year from these families about the improvement in the child and in the family,” Judge Gooding said.
Families like Joshua and Darlene Gibson adopted their first child Skylar, and they are relieved that “Gibson” became his last name.
“It’s a great day for us, it’s been a long process, about a year and a half. We’ve gone through some ups and downs, some good and bad but it’s all good now because we’ve finally got him,” Darlene Gibson said.
The Centers for Disease Control and Prevention estimates 1-in-6 children in the U.S. have some sort of developmental disability ranging from mild speech delays to serious conditions such as cerebral palsy and autism.
In an effort to meet the demand, one local rehab center in Mandarin is now expanding its reach to help kids in need in Clay County.
It’s called Great Strides Rehab Center. Their mission is aimed at enhancing the quality of life for kids and young adults with autism and special needs.
The program was started back in 2004 and operates as a one-stop shop providing multiple therapy treatments.
Dr. Jon Edenfield is the executive director and founder.
“Some of the services we offer include occupational therapy, physical therapy, speech therapy, applied behavior analysis, music therapy and I can go on and on,” he said.
When it comes to special need kids in Clay County, he said the numbers continue to rise. More than 850 kids live in Clay County with autism and there are least 8,000 kids with some form of developmental disability.
Edenfield stresses the importance for parents to be on the lookout for warning signs and triggers associated with autism and developmental disabilities.
“They may focus on particular parts of a toy versus playing with the whole toy, they may not play back and fourth with other children, or their communication may be delayed,” Edenfield said.
Laura Henry is a parent who lives in Green Cove Springs and has been traveling back and fourth to the Mandarin location for the past seven years. The new location in Orange Park will now make getting treatment more convenient. When her daughter Chelsea was 2-years-old, she knew there was a problem based on Chelsea’s behavior.
“She was completely non-verbal, that mean she wasn’t talking, she wasn’t making no sounds no coos or nothing,” Henry said.
Chelsea is now 9 years old and continues to make significant strides an improvements.
“Now she can be able to go up to anybody and say do you want to play let’s play so that’s made the biggest impact the center has made on my child’s life,” Henry said.
She added that the facility continues to bless Chelsea and her family and she encourages other parents to seek help for their children if in need.
“Don’t give up there is a program out there for you and even if it’s not this program Dr. Edenfield will help you find a program for you,” she said.
Many insurance companies offer coverage for Great Stride’s treatment services.
In addition to Clay County and Mandarin, Great Strides has also opened a clinic within the Hope Haven Children’s Center in Arlington.
For more information, the rehab visit their website or call 904.886.3228
An Overview of the Positive Benefits of Human Animal Interaction for Children with Developmental Disabilities
Part 2 in a Series
By Christina Swanson
Summer 2018 edition briefly reviewed the history of the human-animal bond and AAT’s impact on helping children with developmental disabilities. Now we focus on Dr. Edenfield’s research with children within the autism spectrum, and how the Dr. Jon and Nantuckett team is another advantage for your child.
An additional level of therapy was added to the Great Strides Rehabilitation Center and School three years ago when owner and executive director, Dr. Jon Edenfield, introduced Animal Assisted Therapy (AAT) with Nantuckett, a trained Canine Companions for Independence (CCI) dog, into his extensive program.
Already known as one of northeast Florida’s first comprehensive, one-stop, multi-resource, rehabilitation centers, Great Strides Rehabilitation is the result of more than 20 years of research and study by Edenfield as an occupational therapist (OT) being guided by “observing others being assisted and finding new ways of helping people have a better life.”
His experience with the positive benefits of Human Animal Interaction(HAI) for children with developmental disabilities began when he was earning his degrees in OT at the University of Florida (UF). For years, Edenfield volunteered with UF’s hippo therapy, that helps patients with spinal cord injuries and cerebral palsy learn how to walk, and other skills, with the use of horses. Research shows a horse’s movements mimic human movements, so patients can be guided to accomplish various medical goals, like increasing their range of motion or strengthening their core, with horses.
He and his then future wife, who raised and trained horses, also helped several therapeutic riding programs that teach special needs children how to ride a horse to bolster self-esteem. Seeing the big smiles of accomplishment on the kid’s faces and knowing that therapeutic riding was producing results, the Edenfield’s hoped to one day have their own program. When they married and moved to Jacksonville in 2000, they found a home with a large lot with just that in mind. An elderly friend gifted them with his two horses and “Great Strides” was born.
So, Edenfield’s knowledge of how animals can uniquely reach and help children with disabilities began a while before he began researching how animal assisted therapy helps children with autism spectrum disorder. It ended up being his capstone project for three years while he worked toward his OT clinical doctorate, titled “Pilot Study: The physiological effects of animal assisted therapy on children with autism spectrum disorder,” at the University of St. Augustine for Health Sciences.
“The evidence of the health benefits in the bonding between animals and people goes back hundreds of years so why not incorporate this benefit while helping challenged children?” asked Edenfield. Early studies give evidence of the positive effects of HAI, most notably the reduction of stress-related parameters such as cortisol, heart rate, and blood pressure and an increase in improved behavior, social interaction and mood.
For the past several years, Edenfield has shared his knowledge and the process it takes to incorporate an AAT program working with children with autism through a presentation he developed for therapists and medical practitioners. Edenfield covers everything anyone could possibly need to know going back to the early history of HAI, the differences between AAT and AAA (animal assisted activity), other local facilities using AAT or AAA, and the process involved with getting, working with and incorporating a canine companion.
“My hope is that my doctorate research and overview presentation will add to the body of data that supports the use of animal assisted therapy for children with autism as well as make local practitioners aware of the history and process,” said Edenfield.
Although both provide opportunities for motivational, educational, and/or therapeutic benefits to enhance quality of life, AAT differs from AAA in that it has specified goals and objectives for each individual, is directed or delivered by a health service professional with specialized expertise in the area being worked, and the patient’s progress is measured.
Determining whether to use AAT for an individual will depend on what the therapist is evaluating and the best tool to use for this. “Much like a swing, therapy ball or other equipment or method, a practitioner will elect to use AAT because they have determined it will be a better way to teach a skill or accomplish a target,” said Edenfield. “The most important part to any successful treatment is the research and planning.”
Next: the final installment will explore the training that goes into forming the human/animal team, the results of Dr. Edenfield’s pilot study and how fostering shelter kittens are also providing another way to teach skills to students.
Great Strides Rehabilitation’s therapies for your child with disabilities, ages infant to 21, are now available in the Arlington area. Located inside the Hope Haven Hospital at 4600 Beach Boulevard in Jacksonville, Great Strides is distinct in that it is a multi-therapy center offering occupational, physical and speech therapy, applied behavior analysis, psychological services and autism evaluations at one location.
Our therapists work together with the family to provide comprehensive and coordinated care. Recognizing each family and patient are unique, it is our mission to enhance quality of life through the provision of exceptional therapy services. Our personalized team approach, utilizes evidenced based practice to provide the most effective course of intervention for your child.
“We’re excited to be able to now offer our services to benefit children with disabilities over a greater area, now giving more convenience to parents in the Arlington area,” said Dr. Jon Edenfield, DOT, OTR/L, founder and executive director.
To set up an appointment or get more information, call the main office, located in Mandarin at 12276 San Jose Boulevard, Suite 508, at 904-886-3228.
Great Strides also serves patients in Duval, Clay, St. Johns, Nassau and Flagler counties, including the cities of Jacksonville, Jacksonville , Neptune, Atlantic, Ponte Vedra, and Flagler beaches, Amelia Island, Mandarin, Nocatee, St. Johns, St. Augustine, Palm Coast, Orange Park, Macclenny, Middleburg, Keystone Heights, Palatka, Orlando and some cities in Georgia, including Brunswick, Mason, St. Marys and Waycross.
Summer Camp activities can provide opportunities to teach skills in creative ways. One fun way was to have a pizza truck come to the Great Strides campus and give kids a chance to work on their basic food ordering skills. This was AL-C classroom (last year) teacher Melissa Prescott’s idea sparked by AL-A teacher Lauren Cricchio’s established outing day at Zaxby’s that she’s been doing for a while, typically on Tuesdays.
As in previous summers, this activity combined the AL group, including students from the AL-A and AL-C classrooms. As the teacher of the AL-C classroom, I wanted to incorporate what Lauren C. was already doing. She had instituted a Zaxby’s day in which the AL-A boys went into the community for lunch. Like previous summers, the students from AL-C joined.
The day of our Zaxby’s outing (typically Tuesday) meant that the students practiced how to order. After having time to practice with his or her therapist, each student lined up to order from the “cashier” within the classroom. The cashier was always one of the teachers or therapists in the room.
Once we felt comfortable, we would venture across the street to have lunch at Zaxby’s. This was clearly everyone’s favorite weekly activity, and the students participated without hesitation. “This type of engagement demonstrates the power of community outings,” said Prescott.
The same structure was used to prepare for Rocco’s with the AL summer camp attendees working on ordering menu items within the class. Copies of the menu were sent home to parents, so they could let us know what their child wanted to eat including ensuring the menu selection for those using devices were entered in the device. That way, these kids could also select items and exchange it with the food truck employees.
All of these skills were practiced in the classroom so when the students encountered this new community experience, they would be just as engaged as their weekly Zaxby’s outing.
Everyone was excited when Rocco’s Pizzeria truck pulled up, anticipating eating some ooey-gooey pizza slices. It was a hit! All of our students (and staff!) enjoyed this new lunch option. Not only did this activity create a new community outing for the AL group program, but the food truck employees were extremely patient with our students and made them feel special.
“I couldn’t have asked for a better learning opportunity for our kids,” said Prescott.
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.”
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).”
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.
At Great Strides We Make Everyday Lives Better By Christina Swanson
Parenting a child with special needs requires meeting a host of challenges with positive determination, patience and unwavering persistence as the child grows and needs change. Eyes and hearts are opened as family members learn gratitude for everyday things and how simple hygiene and basic tasks, which are normally learned with ease and taken for granted, can be a difficult and pain-staking exercise for a disabled child and a time-intensive ritual for the child’s professional therapists, parents or caregiver.
A big part of Great Stride’s focus is to work as a team with the child, parents and/or caregiver, and teacher outside the classroom to help them learn the skills to be more independent which, in turn, increases the child’s confidence and potential to adapt and learn other skills while freeing-up the parent to meet the other many requirements of their day.
Recently, two Great Strides professional therapists extended their caring reach to teach a student/patient specific tasks by adapting equipment and creating specialized exercises that truly goes above and beyond their duties and speaks volumes to their dedication. Conquering something as seemingly simple as getting in and out of mom’s car and being able to clean oneself after using the toilet, has been a true victory for the child and family alike.
The Bidet Adaption Challenge
Young Brandon Belzer is a Great Strides outpatient who receives both occupational and physical therapy within a close collaborative team approach where his mom, Kimberly Belzer, is highly involved. When Kimberly got the idea to install a bidet on her toilet to relieve her having to be with Brandon every time he used the bathroom, his therapists went to work at teaching Brandon about the many hand and arm movements needed for him to turn the small knob that operated this bidet so he could be self-sufficient.
But Brandon didn’t seem to have the strength or ability to understand the proper way to make the knob turn which set in motion another innovative Great Strides success story thanks to the creative construction of Great Strides Executive Director, Dr. Jon Edenfield, OTD, OTR/L, Brandon’s occupational therapist, Hilda Harrison, and an innovative installation at Brandon’s home by Hilda’s husband, Wayne Powell, who is an engineer. This team looked into ways of adapting the equipment to the skill level of what Brandon could do. In looking for additional products that could change the bidet to have an easy button for Brandon to push instead of turning a knob, there was nothing available on the market. So, Edenfield, Harrison and Powell set to designing adaptive equipment from available parts and combining them together into a final “adaptive” product that’s not available in a store or even yet invented.
Using regular water lines, a lawn sprinkler valve, a low voltage power supply, and a Big Red button type switch, the bidet was adapted, allowing it to bypass the knob operation. This adaptation resulted in a major functional outcome for Brandon who now independently operates his bidet every day using the Big Red switch. Both Kimberly and Brandon are thrilled!
“As special needs parents, we are always trying to make our kids as independent as possible and have them be less vulnerable and dependent on others to perform everyday function which, of course, helps them grow and makes it a lot easier for us as parents,” explained Kimberly. “Now Brandon can go to the bathroom independent without me having to constantly get up and help him. The people at Great Strides are truly amazing in their caring because they know it is really about helping the children. It is a blessing to me that Great Strides is a true partner in helping our children become functional.” The Entering/Leaving Car Challenge
Another easy to take for granted ability is to be able to get in and out of a car unaided. If you think about it, it’s kind of a complicated motion involving crouching forward, lifting the initial leg, ducking the head, etc.
Brandon’s physical therapist, John Kirkland, initiated a simulated car therapy based on observational gait analysis and Brandon’s known history of visual impairment, increased extensor tone, rigid adherence to routine, aversion to novel tasks and limited verbal and comprehension abilities. It appeared the inability of Brandon to transfer from the parking lot or driveway into his mom’s SUV keyed upon his inability to step up and translate his center of mass forward while in a crouch stance. Kirkland determined that a small portion of this task was challenging for Brandon. However, this part task was essential due to the relatively low head clearance and high floorboard relative to the ground in mom’s SUV. There were also concerns with his ability to pivot into his car seat once he steps into the car.
Kirkland used the principles of over-training, part task training, meaningful rewards, and verbal and tactile cueing with Brandon. He did this by creating a simulated physical situation where he hung a piece of cardboard horizontally from the clinic ceiling to replicate the car ceiling, used a step-up bench that approximated the height of the floorboard of the car and an object on the seat that required him to pivot in order to sit down. The cardboard was painted to match the color of mom’s car and several other objects were used to simulate the bench seat of the car.
Then everything was set for Brandon to practice stepping up under a low ceiling with the bandwidth of reward, cueing, and assistance appropriately withdrawn.
The key was Brandon’s ability to generalize the task to his mom’s car, which he successfully accomplished after only two to three trials. A total success and the cost of the project was a nominal $6.00 but helping make mom’s life easier is – PRICELESS!
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