New Jersey program aids transition of kids with autism to adulthood

From The Star-Ledger in N.J.:

LIVINGSTON, N.J. -- Danielle (right in picture) is seated at a cafeteria table, a visitor to a Livingston High School club built around the special needs of her and her classmates from The Children’s Institute, a school for those with socialization and language disorders often born of autism. And she’s brimming with revelations about what makes Danielle, well Danielle.

"I can make peas. I can make cookies. I can make brownies. I can make cakes," 18-year-old Danielle says.

Then, like life itself, the topic suddenly takes a turn.

"Stay focused and concentrate," she says. "Learn how to dress for an interview. Let’s just say I’m learning about the real things in life." It is a trying time for Danielle and her mother, Janet Clark, who is going through the kind of anxiety any parent goes through when a child is becoming an adult — only more so. With her youngest daughter just a few years from graduating from The Children’s Institute in Verona — Danielle’s home away from home since the age of 4 — there is fear that she will be set adrift alone with her autism.

To help her daughter deal with this transition, Clark has attended an evening seminar that will help Danielle eventually find a place of her own. Similar hand-holding seminars are branching out across New Jersey in the coming weeks, beginning with "Life Line for the Journey," directed at parents of children up to 14; "Pathways to Adult Life," directed at those with children age 14-19; and "Preparation for Life After 21," for those parents with children ages 19-21.

"What’s going to happen when that school bus stops coming?" said Lorraine B’Sylva-Lee, who conducts the seminars at TCI and elsewhere for the Family Support Center of New Jersey.

"There are no mandates for adult services. ... We have to muster the strength even though it seems hopeless around every corner."

Clark, as much as Danielle, is at a crossroads, a textbook case of what B’Sylva-Lee deals with on the speaker’s circuit in a nation where autism now affects one in 91 children, according to a new report from the federal Health Resources and Services Administration.

It’s a corner Loretta Boronat has already turned, in some ways painfully so.

All those years when her autistic son Danny was little, she was a cheerleader for how much he could grow and learn. But when he turned 18, she and her husband did an about-face and told the courts he was not capable of taking care of himself so they could become his legal guardian.

"Once he turned 18, then he’s legal … If there were legal matters, financial matters, he’s just not capable of that," she said. "What you have to do — which is kind of painful — is to do the opposite of all those previous years when ... I tried to look at the most positive aspects. You go from being his greatest advocate. ... You have to say he’s totally disabled, he has no skills, he needs our care."

Now 23, Danny is working full-time at a Montclair community health center, where he began part-time in a so-called shelter workshop while still a student at The Children’s Institute.

"Would this be what you hoped and dreamed for when he was young? I’d say, ‘No," she said. But, she said, Danny is surrounded by caring and considerate people who appreciate his work ethic. He even gets transportation to and from work.

As for Danny’s living arrangements, she doesn’t expect him to move out of the family’s West Caldwell home and into an assisted living environment anytime soon. "Yeah, there’s a waiting list for 8,000 people, I mean, last time I checked."

Clark, meanwhile, has already altered her life to ease Danielle’s transition, moving in 2006 from Orange to suburban Caldwell, if only so her daughter can walk to places without the threat of urban traffic.

One summer, Danielle worked as a volunteer at the Caldwell Public Library. "The more interaction she has with people, the better off she’ll be," she said.

Her journey through the transition years will be uncharted.

"It’s almost like a Lewis and Clark expedition," said Clark, referring to the explorers who in 1804 embarked on a cross-continental journey. "You don’t know what’s out there. ... You make the rules as you go along."