The Anderson Center for Autism recently had an opportunity to speak with parents whose children are residents at the center. Here are their experiences.
Years ago, a doctor told Ed and Concetta Hussey their son Joey “would never be able to do anything.”
Joey is severely autistic.
As a child, he engaged in self-injurious behavior. He was aggressive. He wouldn’t make eye contact. His family lived in fear of him getting out of their Brewster home. Each door had an alarm that went off when it was opened, and locks that needed to be opened with a key from the inside.
“My house was the only house that any thief could come into, but once they get in, they’re not getting out,” said Ed, during an interview with the Poughkeepsie Journal. “It was getting impossible” to care for Joey at home.
“We tried everything,” said Concetta. “We knew that Joey could do better, but without constant care he was going to get nowhere.”
So when Joey was 10, his parents made a heart-wrenching decision: they placed their youngest child in a full-time residential program at the Anderson Center for Autism in Hyde Park.
Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention. April is National Autism Awareness Month, a campaign created to promote awareness and acceptance of a disorder that affects an estimated one in 68 U.S. children.
There is no cure, but therapies and behavioral interventions are designed to help and improve specific symptoms. And that’s where the Anderson Center comes in.
“We are the largest organization in the state of New York dedicated (solely) to serving children and adults with autism,” said Anderson Center Executive Director and CEO Patrick Paul. “There’s a very rich support system. We’re just focused on autism.”
The Staatsburg-based facility, founded in 1924, provides about 260 children and adults with both residential and day services. Many of them live on campus. Students take classes, participate in activities on campus and in town, and practice vocational skills in order to create opportunities for placement in adult working programs. Classes, like housing, are broke up first by school age, and then by ability.
Strangers become family
To the Husseys, leaving their son with “strangers” was heartbreaking.
But at Anderson, “an amazing thing has happened,” said Ed. “The strangers are no longer strangers. They’re my family. It’s amazing what they’ve done for Joey, the advancements he’s made. This is the best thing we could have possibly done for Joey.”
Another Anderson parent, Andrea Lambe, agrees. Lambe’s 18-year-old son, who is also named Joey, has been in Anderson’s residential program for nearly three years.
When Joey L. was a toddler, Andrea and her husband, Daniel, started to notice “some quirky behavior,” she said. He had a “ton of energy” and wouldn’t sit still. He wouldn’t make eye contact. He “didn’t enjoy anything.” He “screamed a lot.” He’d stare intently at whirling ceiling fans or television credits.
Joey L. is the oldest of three children. So Andrea didn’t have any other behavior to compare his to.
“I’m very hyper, so (at first) I just thought, maybe he takes after me,” Andrea said. “But when I was around other kids his age, I was wondering how they were all sitting… so easily stimulated by a book or a stuffed animal. And Joey was just running around, watching things spin. Wanting to do anything but be where he was.”
By the time he was 14, “he was getting bigger and stronger than me,” Andrea said. “I couldn’t get him on the bus. He escaped the house twice,” despite locks and alarms.
The Lambes live in Suffolk County, near the Long Island Railroad tracks. Andrea had recurring nightmares of her son getting hit by a train.
A new home
The Anderson Center was a hard sell for Joey’s dad, Daniel, who didn’t want his son far from their Long Island home. But after bad experiences at a nearby residential facility, the couple agreed that Anderson was the best place for Joey L.
Anderson accepts students from around the world, but most of them are from the Hudson Valley and the greater New York City metropolitan area.
“I would drive to Australia if I had to,” Andrea said. The family bought a house in the Town of Stanford, and “I’m here every weekend.”
And the Lambes have noticed incredible changes in their son since placing him at Anderson. He speaks and smiles more. He looks forward to things, like swimming and weekly roller skating sessions. He has friends.
“I see him interacting with kids in his residence,” Andrea said. “Joey is happy. He has a life.”
The family even goes out to eat together — something Andrea never thought would be possible — at Coppola’s Ristorante in Hyde Park, one of the first local businesses that completed training through Anderson’s Autism Supportive Environment program.
Through individualized consultations, Anderson Center Consulting assists businesses in designing environments that are supportive to the needs of individuals with autism and their families, according to the center. Dozens of local businesses and organizations have been granted the Autism Supportive Environment designation.
“We’re coming to our new normal,” Andrea said.
The Hussey family also credits their Joey’s quality of life to the Anderson Center.
Since coming to Anderson, Joey H. graduated from the children’s program to the adult program. He won the Victor V. Anderson award (in honor of Anderson’s founder) for outstanding achievement. He’s less aggressive. He does chores and goes on outings. He’s more affectionate.
The Husseys even took a week-long trip to Disney World last November.
Like the Lambe family, the Husseys put their son in a variety of programs before Anderson, including those offered by public school districts.
The Individuals with Disabilities Education Act requires that students with disabilities receive “a free appropriate public education” through an individualized education program, or IEP, designed for each student.
Throughout the country, thousands of dissatisfied parents and guardians have battled school districts for decades over what they considered inadequate efforts to educate children with disabilities, USA Today has reported. Many students have been moved from public to private schools, and parents often go to court seeking tuition reimbursement based on the public schools’ alleged failure to educate their children.
But the Brewster Central School District was a big help to the Husseys when it came to Joey H.’s Anderson placement, they said.
Now that he’s an adult, Joey H. is waiting to transition to one of Anderson’s Individual Residential Alternative, or IRA. The group homes typically house four to six Anderson graduates, and are staffed 24/7.
But when it comes to starting group homes, there are lots of regulations, restrictions and price constraints, said Paul, the Anderson CEO. It’s difficult to find a suitable residence for the state to approve.
“The development of a group home…can take us up to two years,” Paul said.