One of 3-year-old Nathan Small's favorite activities these days is an improvised game called "Who is this?"
Seated around the dinner table, Sean and Heather Small point to various family members and ask their youngest child to name each person. "Mama," "Daddy," "Marshall," "Helen," Nathan will reply as he happily acknowledges his parents as well as his brother and sister.
Though the game seems commonplace, it is nothing short of miraculous to the Smalls, who live in Oklahoma City. Until very recently, Nathan, who is autistic, could use only gestures or sign language to communicate with them.
His father attributes much of his progress to the intensive help Nathan receives at his new school, Good Shepherd Catholic School at Mercy Health Center Oklahoma City.
Good Shepherd opened its doors to a small number of autistic children ages 3 to 9 last September with the mission of using applied behavior analysis to help to remediate challenges with communication, motor skills coordination and behavior that are hallmarks of the disorder. But the school's very existence is almost as noteworthy as the progress some of its students already have made.
If, as the African proverb says, "It takes a whole village to raise a child," then it has taken that plus a major collaboration between three Sooner institutions — University of Central Oklahoma, Mercy and the Archdiocese of Oklahoma City — to make the school a reality.
Discussions about the possibility of a school like Good Shepherd go back at least three years, when Mary Sweet-Darter, an associate professor of psychology at the university, approached Diana Smalley, president and chief executive of Mercy Health System of Oklahoma, to inquire about the status of a vacant building, once used as a child care facility, on its campus.
"UCO's college of education had been using a few rooms in a church near the school to train behavioral interventionists to work with autistic children in a curriculum with cutting-edge techniques," says Thomas Edelstein, vice president of mission and ethics for the Mercy Oklahoma system. "They were looking to expand their program to help fill a tremendous need for specialized schooling in the community."
Mercy saw the school proposal as "a wonderful opportunity to serve and a great fit with our heritage and tradition," says Edelstein. It offered to refurbish the building — a $400,000 undertaking — and lease it for $1 a year, providing the school with maintenance, utilities and security as well.
Funding and accreditation were major hurdles, however. It wasn't until the Inasmuch Foundation granted the school a $250,000 start-up loan and Sr. Catherine Powers, CND, superintendent of schools for the Archdiocese of Oklahoma City, agreed to provide support and accreditation through the archdiocesan education office, that the dream of Good Shepherd school actually began to take shape.
High staff-to-student ratioTo date the school has enrolled eight children and is staffed by 15 employees, including its principal, Donna Kearns, a psychology professor currently on loan from UCO, plus a treatment coordinator, school psychologist, special education/early education teacher, and several board-certified behavioral analysts.
"Our plan is to serve 25 children — 20 with autism as well as five neurotypical kids — by the time we gear up for the new school year in August," says Kearns. Experts say it's important for children with autism to interact with other children who can model social skills.
Good Shepherd's approach requires three individuals to work one-on-one with each child. "Our staffing needs may exceed 60, including many UCO students who work part-time," says Kearns.
Though that number may seem excessive, it takes coordination among many specialists to provide the kind of intensive intervention required by students to make enough progress to transition successfully to public school and, it is hoped, eventually be mainstreamed into adult life.
Applied behavior analysts assess skills, provide motivations to replace inappropriate behaviors, track progress and challenge students to add new skills, all at an individual pace. Classroom activities include learning to sit in a group, listen and respond, all as lessons — from learning the days of the week to reading, social studies and handwriting skills — are taught. Extra intervention in language and gross and fine motor skills is provided by speech, physical and occupational therapists on a one-on-one basis.
Rare resourceParents are required to attend group training programs and spend time at school — which is in session 11 months of the year — meeting with specialists in behavior prevention to discuss sleep and medication issues and to learn to reinforce activities at home, Kearns says.
"We do not know what causes autism, but we do know that intense, early intervention produces the best remediation," says Kearns. "Yet resources are very scarce for providing the services that are needed. We are the only school like this — practicing applied behavior analysis — in the state of Oklahoma, and the only Catholic school to do so in the entire country."
That, she adds, is a sobering statistic, given that the Centers for Disease Control and Prevention now estimates that 1 in 110 children in the U.S. are affected by autism spectrum disorders. In boys, the incidence may be as high as 1 in 87.
While public schools are required to supply special education for autistic children, parents say programs are often less than ideal. No two autistic children manifest the same set of symptoms, so needs are very individualized — and few, if any, public schools can afford one-to-one help, much less three-to-one staffing.
State supportOf course, many parents struggle to pay for private schools like Good Shepherd — where tuition runs $21,000 a year. Several families receive financial help through Oklahoma's Lindsey Nicole Henry Scholarships for Students with Disabilities Program.
That legislation — passed in 2010 and named in honor of former Oklahoma governor Brad Henry's infant daughter, who died of a rare neuromuscular disease — allows students with disabilities who have an individualized education program to qualify for a scholarship to attend any public or private school that meets the accreditation requirements of the state's board of education.
Rob Medley, 6, is one of the school's Lindsey Nicole Henry scholarship students. According to his mother, Michi Medley, he was talking and humming Mozart at 15 months before he started losing communication skills. Despite early intervention — including a stint at UCO's pilot applied behavior analysis program near campus — he is still preverbal.
Despite Rob's lack of words, his family is thrilled with the support he is receiving at Good Shepherd. "Rob has already made a lot of progress with eye contact and is now making sounds and trying to put them together," says his mother. "He is coming out of his shell. He has a general awareness that he hasn't had before; he's maturing a lot."
Even if Rob doesn't begin to talk — his apraxia affects his ability to both speak and do sign language — Michi Medley is convinced the school will be able to teach him to communicate using an assistance device.
"There's no way to predict how things will eventually turn out, but Good Shepherd pushes Rob to go a step beyond wherever his skills are at the moment — and it does so in such a loving environment," she says. "When you have a child with these kinds of challenges, it tends to be all-consuming. Through holiday dinners, extracurricular activities like Kickstart — a soccer league for the kids that my husband helps coordinate — and group meetings, this school has become an extension of our family life."
Copyright © 2012 by the Catholic Health Association of the United StatesFor reprint permission, contact Donna Troy or call (314) 253-3450.