Share ThisEditor's note: The names of the family members depicted in the following scenario have been changed to protect their identities and ensure confidentiality.
Most 10-year-old kids like Sam want the latest iPhone, a new skateboard, or a pro hockey jersey with their favorite player's name and number on the back.
But ask Sam, and his number one wish wasn't so pie-in-the-sky: All he had wanted was to eat at Chuck E. Cheese's with his 12-year-old brother, Josh.
The two had never gone out to dinner together — until recently.
“Josh was diagnosed with autism at 3 years old,” the boys' mother, Sarah Smith, explains. “Unless you have a family member who has autism or another condition on the autism spectrum, you don't realize how dramatically it impacts your life.
“Josh had a lot of trouble sitting still and being patient, so we had never really been able to go out and eat dinner as a family,” she continues. “When Sam was younger, he didn't really understand why.”
But Sam finally got his wish, thanks to the caring staff at Highlands Hospital Regional Center for Autism (HHRCA) in Connellsville, Fayette County, PA, where Josh is a student. Josh's teachers and therapists there were confident they could help him overcome his challenges so he could dine out with his family.
“We told the family, 'If you want to go out to dinner, we'll make it happen,'” says Jordan Morran, HHRCA's director of autism services. “Over several months, we worked on helping Josh wait patiently for his food to be served. We worked with him on appropriate sitting. And once we thought he was ready, we were certainly excited.”
Tucked into the rolling foothills of the Laurel Highlands, HHRCA sits less than a mile from the main Highlands Hospital campus above downtown Connellsville. Residents of the largely rural area might be surprised to know that HHRCA — located on six partially wooded acres in a peaceful, small-town environment — has earned national acclaim for its educational and behavioral therapy programs. In 2014, HHRCA became the first autism care facility in the nation to earn licensed affiliation with the renowned Cleveland Clinic Children's Center for Autism.
Morran says there are 13 affiliate sites of the Cleveland Clinic nationwide, but HHRCA is the only one that has been designated as a licensed site, which means the facility follows Cleveland Clinic's high standards for care that is based on the latest autism research and is provided using science-based therapies.
“Although the actual treatment model is proprietary, we focus strongly on what's called Applied Behavior Analysis, or ABA,” Morran says. “Using ABA, we teach students appropriate behaviors, help kids to practice them again and again, and then offer praise and positive feedback.”
Therapy also focuses on reducing or even eliminating behaviors that interfere with daily living. For example, students learn how to properly manage their anger, respect others and interact in various social settings — such as eating a meal in a restaurant or going to a movie theater.
“One child was having significant difficulties when he would go to church,” Morran says. “While we worked with him one-on-one, we suggested the family go on Saturdays, when church is less crowded. Then they worked up to going back on a Sunday.”
Another student experienced distress when going to doctors' visits. HHRCA staff helped the child work on behavior modification and gave his parents coping strategies. The visits still aren't a breeze, but the family manages much better, Morran says.
According to the Centers for Disease Control and Prevention (CDC) 2014 Community Report on Autism, one in 68 children in the U.S. is affected by autism. In Fayette County, which Morran says has one of the highest autism rates in Pennsylvania, autism affects an estimated 444 of the 41,742 residents between the ages of 5 and 24, according to Highlands Hospital's 2013 Community Health Needs Assessment.
Opened in 2010 with four students, HHRCA operates as a school licensed by the Pennsylvania Department of Education, along with providing autism care and therapy programs. The facility serves students ages 5 to 21 and partners with six area school districts.
“We have 15 students right now, and we'll have a 16th in May,” Morran says.
HHRCA students have been diagnosed with one of the conditions on the autism spectrum — including Asperger's, autism and pervasive developmental disorder-not otherwise specified (PDD-NOS). Some of the students also have multiple diagnoses, including intellectual disabilities, attention deficit hyperactivity disorder (ADHD), sensory processing disorder, oppositional defiant disorder and other unspecified developmental disorders.
“There are instances where the public school is unable to meet the individual needs of the students; we provide an alternative placement to better accommodate them,” says Morran, who manages a staff of 11 teachers and therapists. “The goal is to get them enrolled with us as early as possible and then transition them back to their public schools.”
Most students ride a public school bus to the facility from within their home school districts, which may cover HHRCA tuition costs, or families may privately pay. (Insurance isn't accepted.)
“Many of our families were concerned to send their children any distance on a school bus, and some travel from 45 minutes away,” says Vicki Meier, Highlands Hospital's director of community and professional relations. “But we've worked with the school districts to get aides on the buses, and that's helped to calm parents' fears.”
Per the Cleveland Clinic model, each HHRCA classroom is supervised by a licensed teacher, with a behavioral therapist always present. There are no more than eight students per class. Children seamlessly receive academic instruction; behavioral therapy; speech therapy; life and social skills training; physical therapy; and vocational training — all in a safe, positive, nurturing environment.
“Students must train and master each skill before they move on to the next,” Morran says.
A Cleveland Clinic specialist talks to Morran weekly and visits HHRCA quarterly for site evaluations and staff training to ensure the facility maintains the highest quality care.
“Along with academics, we also teach kids how to cook and do laundry,” Morran says. “With Highmark's help to fund a van, some students are transported to Highlands Hospital and learn how to do office work. They're helping our human resources department by stuffing envelopes, using a postage machine and helping with the mail.”
Other students participate in vocational programs to clean hospital equipment. And HHRCA hopes to begin placing students in the Highlands Hospital Wellness Center to work as front-desk greeters and to check ID badges.
“We've acquired a nearby former school building that's 47,000 square feet,” Meier says.“HHRCA and other hospital programs need room to grow, so we're really excited about how that could happen there.”
HHRCA's end goal is to help students graduate and participate fully in everyday activities, whether it's returning to school or starting a career. Families are supported with at least two home visits per year to assess the student's daily living environment. And HHRCA hosts four annual family days at the facility to teach parents and students additional skills and strategies for social support, nutrition and other needs.
“We just want to help our students reach their full potential and lead happy lives,” Morran says.
The Smith family can surely attest to that.
It was a chilly October day, but the sky was blue and the sun was shining when Sam, Josh and their parents pulled their minivan into the Chuck E. Cheese’s parking lot. And there to greet them at the door were three members of the HHRCA staff — including Morran — who offered smiles and hugs, and confessed a real hankering for some pepperoni pizza.
The whole gang sat at a large table in the middle of the restaurant — the boys laughing and joking, their parents beaming from ear to ear while choking back tears, and the HHRCA staff there to lend a hand and, of course, to help celebrate.
“Josh did amazingly well,” Morran recalls. “I think he had a really fun time that day.”
The boys' father, Jim Smith, couldn't agree more.
“To see the smiles on our boys' faces was worth more than money can buy,” he says. “I can't say enough about the staff at Highlands Hospital. Without their help, we'd never have been able to do this.
“They've worked wonders for our family,” he continues. “They have made such an amazing difference in Josh’s life.”
And they've also helped to make his 10-year-old brother pretty darn happy, too.
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