Celebrating Small Victories
Children with severe disabilities are treated with compassion at local public school and privately owned therapy center
There are those who measure success by money earned or office held, or, as children, by number of homeruns hit or grades received; but there are also those who find gratification and victory in the attainment of much simpler milestones.
At Gretchen Everhart School, Leon County’s special education center for students with significant intellectual, medical, physical and behavioral disabilities, the principal and a special education teacher both stop what they are doing and smile, jubilantly, as a boy, about 12, walks across the room and grabs a tissue out of its box. He wipes his nose and walks back to his table.
“Wow, Tyler! You just wiped your nose all by yourself!” exclaims Principal Jane Floyd Bullen. The child’s teacher, Joi Bennett, offers her student further praise.
Next, a 10-year-old boy grabs the principal by the hand. He holds his other hand up to his mouth and makes a circular motion. He is obviously very proud to show her that he can now brush his teeth. She beams down at him and congratulates him on his success.
“Success, here, is helping these children be as independent as possible — as self-sufficient as possible,” Bullen says.
Across town, at PlayBig Therapy & Learning Center, grandparents and parents are brought to tears by actions that others may take for granted: a grandchild asking for chips, and siblings playing together, contentedly.
PlayBig treats children with neurological challenges that include Autism Spectrum Disorder (ASD) — a neurodevelopmental disorder defined by persistent deficits in social communication and social interaction accompanied by restricted, repetitive patterns of behavior, interests or activities.
“They have a different way of thinking, and their brain circuitry is set up differently,” says Kelley Hutto, a licensed Physical Therapist and the founder/co-owner of PlayBig. “It’s not that they are unintelligent.” Hutto’s statement is supported by current studies, which show that 50 percent of children with autism have a normal to high IQ.
According to Florida State University’s Autism Institute, which serves over 3,300 individuals in 18 counties in the Florida Panhandle, ASD is a lifelong diagnosis; but with appropriate early intervention, individuals with ASD can lead productive, inclusive and fulfilling lives. Many do well in school, participate in activities they enjoy, go to college and are employed in adulthood.
But the diagnosis can still be devastating to parents.
The grandmother of a 5-year-old PlayBig patient, who asked that her name and her grandchild’s name be withheld, describes what it’s like for parents to learn that their child has autism.
“You mourn the loss of the son you always thought you’d have. You have high expectations when they are born. Then when your child is diagnosed with autism …” She shakes her head, sadly. “It’s a challenge.
“But,” she continues, “there’s beauty in the process. You learn to find such joy in the smallest things … like, he put two words together today, or he looked me in the eyes today. There’s such joy.”
She looks at her grandson through the glass window that separates the waiting room from the play area. “He’s happy here,” she says. “The therapists here truly love the children. It’s a calling, not just a vocation for them. I feel that he is safe here. He is loved here.”
The boy’s grandfather says, “He was basically feral before starting at PlayBig. Now he knows where he’s at. He follows instructions. His biggest obstacle, now, is being non-verbal.”
PlayBig’s successes with achieving small victories that have big consequences for children with autism and other neurological conditions is due to their novel treatment approach, which combines traditional and cutting-edge therapies.
“PlayBig is the first therapy practice in the nation to integrate developmental therapies with behavioral health therapies in its model — which has had profound results for our young patients and their families,” says Rachel Scharlepp, a Licensed Clinical Social Worker and PlayBig’s co-owner.
At last count, PlayBig averaged more than 120 therapy sessions per day. In one month, PlayBig therapists — referred to as “coaches” — treat almost 200 individual children — “athletes.”
“Big movement, vestibular, swinging, fine motor skills, speech therapy — we want big results here, big effect, big emotion, big movement, big communication,” says Hutto.
PlayBig utilizes big expertise, too: Under one roof, the therapy practice brings together 23 licensed physical and occupational therapists, speech-language pathologists, behavioral health therapists and targeted case managers, each of whom is dedicated to helping PlayBig athletes reach their full potential.
PlayBig also offers a learning center, which provides tutoring.
“We schedule a three- or four-hour session, so a child can go from one therapy to another therapy to another, as ready,” says Hutto. “We are synergistic in our … interdisciplinary approach, (which) offers optimum impact. It’s like getting triple the therapy in one day’s session.”
She explains that a child who does not attend PlayBig may be scheduled for physical therapy (PT) at a facility on a Monday. Then, maybe on Wednesday, the child would go for mental health therapy somewhere else. Speech therapy might be a day or two later, etc.
“When a child goes to mental health therapy for a one-hour appointment, the therapist may get 10 minutes of good work, because the child wants to swing or play,” Hutto says. “When they are at PlayBig, they finish with PT, occupational therapy and maybe speech therapy, and then the therapist will take them by the hand and say, ‘Let’s go to the playroom,’ for mental health therapy. The child will then get a full, productive hour of mental health therapy, because he or she is ready.”
All of the coaches at PlayBig are on the same team as an athlete. For example, the physical therapist knows what the speech therapist is working on, so the physical therapist communicates to the speech therapist that the child said something today while playing. If the child is dropped off at 9 a.m. and is picked up at noon, he or she has had three therapies. The last therapist knows what was done with the other two and can discuss it and plan for the next session.
“Since we are all on the floor,” Hutto says, “if a coach/athlete combination would like to use another coach/athlete combination for peer interaction, they can. Peer interaction is crucial.”
PlayBig’s approach to treating autism is very different from Applied Behavioral Analysis (ABA), an approach Hutto describes as training or drilling, or like learning from flash cards.
“Some will say ABA’s the only proven method for treating autism. Well that’s just not so,” Hutto says. “We do it naturally. Children with autism … are more like regular kids than unlike. Our approach is much more relationship-based, experienced-based. ABA has a place, but it doesn’t treat autism. ABA modifies behavior, but that’s just treating a symptom of autism, not the disability itself. ASD is not a behavioral disability.”
PlayBig utilizes neuroplasticity-based therapy, which has, at its core, the understanding that the brain is more plastic than porcelain.
“Neurons that fire together wire together,” Hutto says. “We can build circuitry. Ten years ago, scientists found that there are … neurons waiting in the memory part of the brain, just waiting to be engaged. If they’re not engaged for 21 days, they wither and die. What engages neurons? Big movement, big communication.”
According to Hutto, neuroplasticity-based therapy has application not only for children, but also for the aged population suffering from Alzheimer’s and degenerative diseases. The treatment is very similar to stroke rehab. During a stroke, oxygen is restricted from the brain, and neurons and brain cells die.
“They don’t just tell the stroke patient she’ll never walk again,” Hutto says. “No, they create new neural pathways. They force the pathways.”
Obviously passionate about her topic, Hutto further explains, “What we say is, ‘We’re going to keep sending big sensory motor information through any channel — the seven senses and then some. We’ll keep pushing and pressing and forcing information. We’re going to keep sending it and sending it and sending it, through the body, through emotions and through movement, and we’ll keep making those neurons fire and build new circuitry.” She gestures towards the numerous swings and a giant trampoline that are set up in a large, gym-like area. “You want to get a child talking, put him on a swing.”
Swinging and jumping on a trampoline helps autistic and neurologically challenged children in multiple ways.
“First, big movement changes brain chemistry,” Hutto says. “It gives more dopamine and serotonin, and you feel better. It improves balance and gaze stability, which help a child to be able to sit in a chair and focus. Swinging and jumping on a trampoline works on the vestibular system in the inner ear. These activities help in processing sound, because they share the same nerve and travel the same pathways.”
Children with significant disabilities other than autism often have the same needs as children with autism. Many of the strategies that are used with autistic children at Gretchen Everhart have been found to be effective on children with other disabilities.
Some students at Gretchen Everhart have autism along with other severe intellectual disabilities. Others face different challenges, such as severe birth defects; but Bullen says they don’t worry much about the diagnosis — just on giving the best instruction and intervention.
“Often the strategies used for students on the (autistic) spectrum are also appropriate for children with other significant disabilities, just individualized for the student,” says Bullen. “It is … important to identify what they need to learn and to help them in the ways appropriate to them. We concentrate on helping the student make progress and get the services they need rather than worrying about their diagnosis. We don’t get hung up on what the label is. It’s the goals that are important to us.”
Well-regarded by the Department of Education, Gretchen Everhart has been recognized as a Gold Level School. It serves about 200 students from Leon County and its six surrounding counties. The students have severe medical, intellectual and behavioral challenges, and their ages range from four to 22 years old. Their IQs are 50 and below.
“It’s a wonderful school,” says Dr. Alan Cox, Divisional Director, Elementary Education & ESE for Leon County Schools. “They have registered nurses, speech pathologists, physical therapists, occupational therapists, all there.”
No classroom is the same. Each one is designed for the students they serve. Some classrooms provide vestibular stimulation and are furnished with trampolines, swings and ball pits; some are arranged for students in wheelchairs. In one room, high school students, some in wheelchairs, participated in a dance and music class.
Occupational therapists and speech therapists put together sensory experiences to coordinate with the theme of current lessons. For a lesson on “The Past and Present,” items like seeds and dirt were placed in trays for students to interact with and feel.
The Sensory Room provides sensory input with fiber optics. Parts of the floor light up as a person walks across it. Other parts provide a beautiful dance of light and shapes across the walls.
“This helps kids get the sensory experience they are sometimes craving,” Bullen explains. “It helps them find their body in space, has a calming aspect, gives them something to concentrate on. It helps them integrate their world and their place in it and teaches them to be aware of their bodies and how they move through space (like navigating through a room full of chairs). Sensory input is so valuable for children on the (autism) spectrum, as well as for individuals with cognitive deficits,” Bullen says.
Students with less severe challenges than those who attend Gretchen Everhart are educated within Leon County’s regular schools. The Leon County School System places children in different “tiers” based on a progress monitoring system. Cox explains that all students get core instruction in subjects such as English Language Arts and Math. Regular classes are Tier One.
“Children who don’t react like everyone else and who require some specific interventions move to Tier Two, where they are still in regular education classes, but they may have a small group and do some special things with them,” he says.
According to Cox, after going through Tier Two, both behaviorally and academically, progress-monitoring instruments determine if a child needs to go to Tier Three, which is more intensive.
If a student meets a set list of criteria established by state rules, there is an eligibility hearing or a parent can request an evaluation. The child is given a full psychological screening and a long battery of other screenings to determine if he or she is eligible for exceptional student education. The school then develops an Individual Education Plan (IEP) that caters to the student’s individual needs.
“That all guides us into what we call ‘placement’ — whether someone can be educated at the regular schools in a regular class, in a self-contained class or at Gretchen Everhart,” Cox says.
Leon County School Superintendent Rocky Hanna says, “We try to mainstream these kids as much as possible to keep them in their home-area schools. We’re trying to prepare children for life after school — trying to prepare them for when they leave our school system, for what life is going to be like in the workplace or college or whatever is next. Many autistic children are off the charts — intellectually brilliant — but they have to learn how to assimilate and survive in the mainstream world.”
Outside help is also available to these children. “If a child at Roberts or Hawks Rise needs PT or OT, we must provide it by law, and we do,” says Cox. The reason for this is that both Roberts and Hawks Rise Elementary Schools have satellite classes for autistic children.
Cox continues, “Two years ago, a law passed that lets private providers like Care, Engage and PlayBig come into the classroom and work with the child. We allow them to come in.”
However, the schools are resistive to students leaving during the school day, saying that the schools are responsible for the child’s IEP and test performance. The child being in school also affects full-time enrollment numbers, which determine federal funding for children with disabilities, according to Cox.
The therapists and teachers, both at private providers like PlayBig and within Gretchen Everhart and the other Leon County Schools, are very personally involved in the treatment of each child.
“Intensity of therapy is very high and very demanding. They sweat when they’re working with these kids, and they are very committed,” Hutto says of her staff. “They see all the little, mini victories all day long, and that’s what keeps our staff happy.”
Hanna says, “The people over at Everhart are saints. We are so blessed to have a school like Gretchen Everhart in our school system and our community.”
Bullen says of her staff, “They’re here for all the right reasons. Everyone understands the challenges the parents have. When our kids get sick, it’s hard. Sometimes the kids pass away because of their medical issues, and it’s hard … but it’s still very, very rewarding work.”
Rewarding, indeed, knowing that each little victory, each success, brings a truly exceptional student that much closer to a full and more gratifying life.