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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.”

 

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.

 

                                               

 

 

 

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