PROVIDENCE, R.I. (WPRI) – Mike and Claudia Swiader’s first-born daughter, Krista, was just starting kindergarten when her little brother, Adam, was diagnosed with autism.
“They said, ‘I’m sorry you’ll be lucky if he can bag groceries when he grows up,’ and I remember looking at Mike and saying ‘oh my God,'” said Claudia Swiader. “They said please don’t have more children – it repeats in male siblings, and Matthew was at home, not even a year old.”
A few years later, doctors delivered the same devastating diagnosis for Matt – a form of autism called pervasive developmental disorder.
“I don’t know who I cried for more those first few days, Adam, Matt, Krista,” said Claudia. “Or the two of us for having lost what we thought was going to be our American dream of a happy little family of five.”
Autism is still challenging to diagnose, treat and understand today. Three decades ago, the Swiaders were young parents just starting a family, to them the double diagnoses almost felt like death sentences.
“I remember sitting there crying one day thinking: Oh my God the only way I’m going to solve this, because I can’t trust just anybody with Adam and Matt, one day I will have to kill them and kill myself and hope to God Krista understands why I did this,” said Claudia. “Now I sit there and go – God Claudia – that was ridiculous. You know? But back then you’re talking now 20 years ago – I thought that was my solution.”
Now, the Swiaders have placed their trust in The Groden Network, the state-licensed agency that operates the group home where Adam, 28, and Matt, 30, now live. The Groden Network is a Providence agency that supports adults with developmental disabilities which purchased the five-bedroom house in Johnston in 2009.
Claudia said the neighbors weren’t exactly rushing over with welcome baskets at first.
“It was very difficult in the beginning – they kind of [associated] a group home with like a halfway house – for drug addicts,” she said. “The center went around and knocked on doors – ‘it’s not what you think’ and literally they have been treated very well since they came here.”
Adam and Matt live there with three other autistic men. The Groden Network staffs the home 24-hours a day.
“The staff is usually in charge of cooking, but they do have the five boys help – they do make their own lunches,” said Claudia. “They can live here the rest of their lives, this is going to be their forever home.”
This ideal living situation didn’t materialize overnight, though. The Swiaders spent decades visiting doctors, staying in the hospital, and pleading with local lawmakers
“I think the state is finally coming to the grips that this isn’t going to go away,” Claudia said. “I remember testifying, we warned them when our boys were 18, our boys are the tip of the iceberg.”
According to the Centers for Disease Control and Prevention, autism now affects 1 in every 68 children.
In Rhode Island, there are 36 agencies licensed by the state to provide support and services to people with developmental disabilities. The Cove Center, a division of the Groden Network, is one of those agencies.
The associate director of the Cove Center’s day program, Brian Holt, said there’s a lot of work that still needs to be done in order to be able to properly care for the aging autistic population.
“I think the government is aware, but I don’t think they’re prepared,” Holt said. “In Rhode Island, in particular, there’s certainly more and more children who are coming through their special education programs, who are about to reach adulthood, who are going to need not only day program services, employment services, but residential supports.”
According to the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals, more than 1,200 adults live in 313 group homes in the state.
Web Extra: Housing for adults with autism »
Holt said there’s also another type of living arrangement that Rhode Islanders may start to see more of, soon.
“The state of Rhode Island is encouraging people to go into the shared living program as opposed to group homes because … they are more natural community integrated environments,” Holt said. “But also because they’re less expensive with the number of people who are coming into the system now.”
Holt said a shared living arrangement is similar to a foster home setting where the service provider lives in the home.
Now that Adam and Matt have settled into their home, their parents said they’re grateful that they planned ahead and they’re hoping that their story will inspire others to do the same.
“Don’t wake up on the day your child turns 21 and think ‘I can’t handle it anymore, I need to get them into adult placement,'” Claudia said. “That’s going to be too late.”
The Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals recommends families reach out to their social case worker to properly plan for their child’s future. If they’re looking at residential options – parents should speak to multiple providers before making their final choice.
Claudia said people have always asked her where she saw her sons in the future, “I always answered happy and healthy and well cared for, and I’ve got what I asked for.”
Adam and Matt’s big sister, Krista, recently got married. The Swiaders say they’re looking forward to the day their sons become uncles.
“I have dreams for my sons, too,” said Mike. “The dreams might not be [that] they’re going to be coming home with a nice girl and getting married and having grandchildren, but I still have dreams for my sons and there’s a lot that I hope for them for in the future.”