Gloria Jensen always hoped her son, Luke, would take over her Audubon gift shop when it was time for her to retire. When reality set in that Luke,who has autism, wasn’t able to take the responsibilities of running a business, Jensen changed her plans to focus more on providing care for him and other individuals in the special needs community.According to the Centers for Disease Control and Prevention (CDC), one in 34 children in New Jersey have autism—the highest rate of autism in the nation. Those with the disorder have challenges with social skills, speech and some cannot communicate verbally. It takes a toll on the individual and their families, but there are organizations in South Jersey that are dedicated to improving the lives of those with autism.
Jensen knew there were many who needed help and assistance because her shop was a “go-to” for several parents, stopping in not just to purchase items from her store, but to ask her questions about her experience.
“They’d come in for advice because they knew I had a son with autism,” Jensen says. “They would ask questions about services and what to do and different diagnoses. They’d say, ‘I need help.’ I decided to continue [working in that space] and do some work in the special needs community. This is how Luke’s Place evolved.”
Luke’s Place is a nonprofit organization that provides young adults ages 21 and over with special needs in Camden and Gloucester counties services and social experiences to help live fulfilling and purposeful lives. Group evening outings such as Philadelphia 76ersgames, bowling and dances take place a few times a month, and Jensen says soon they will start to accept people for day programs where they will go to restaurants, movies, museums and parks. The goal for the organization is to have these individuals included with the community.
“They don’t get that opportunity,” Jensen says. “We help facilitate that, where they are not feeling so different; where they feel like they are part of the community. All are welcome and all are accepted. They feel that they aren’t different and they are just like anyone else when they come to our events.”
Jensen says the work is crucial because other services and programs in a school setting that have been provided to these individuals since a young age stop at age21. The transition is not an easy one and comes with a lot of questions and uncertainty for parents.
“The school [system] says when you are21, we’re done—now figure it out,” Jensen says. “Parents ask, ‘What do I do? Where can they participate in sports?’ You always think you’re prepared; you think you’re ready for it, but all of a sudden, 21 is here and it’s, ‘What happens now?’ I don’t want him to sit down all day. We have to keep moving along andfind good quality programs. Unfortunately there are not enough and there are waiting lists everywhere. Parents are searching and looking for wonderful opportunities but there are few and far between.”
JEVS Human Services, an organization that focuses on individuals with physical, developmental and emotional challenges, operates a unique independent living program in Collingswood for young adults—JEVS Independence Network. They provide not just housing, but employment support—helping these individuals find gainful employment.
“We help people learn workplace communication, build independent living skills and participate in meaningful ways in their community,” says Jill Gromen, director of operations, NJ & Independence NetworkServices at JEVS Human Services.
Gromen says the age range is 22-31 and more than half have autism. For just about all of them, this is their first time living away from the comforts of home and their parents, but Gromen says parents tell her this program is just as meaningful for them because they don’t have to worry about not being there with their children.
“From a community-based level, seeing their sons and daughters build relationships and friendships with other people, really get involved and get to be part of a community and have jobs and a purpose— it’s a reason to get up in the morning,” she says. “Having a meaningful life is what’s most important.”
What’s also important is celebrating each individual’s accomplishments. “How proud they are with their job or the next step in their career, walking to a friend’s house without it being completely organized by a parent or someone else; there are so many other accomplishments, too,” Gromen explains. “It’s the little things that are the big things. Being able to do laundry on their own, being able to shop for their favorite meal and prepare that, joining a community chorus in Collingswood.”
Anne Marie Bauman’s son Paul has autism and lives in Collingswood with his older brother, wife and child. She has comfort knowing he’s in a safe community with his family and has put steps in place to make sure he succeeded at transitioning from school to adulthood, and succeeds transitioning again down the road when the family’s situation will change.
“We want them to participate as much as possible in society, but someone like my son has a pretty narrow set of interests,” she says. “Social interaction is very difficult for him, so what we’ve done in our family instead is try to build what he needs around him—finding a job that’s meaningful, sharing the apartment with his older brother. I’m already working on part of the second transition because I’m going to die one day. When he moves into a living situation when I die, it’s not going to be the bottom of his world is going to fall out. We worry so much about getting them into school, making sure they get a good education and learn skills and then we forget about the next 50 years.”
Bauman owns Penn Jersey Signs in Oaklyn and is one of the local businesses that employs individuals from JEVS Independence Network. She says she was happy to hire Zachary Stroik and calls him an asset to the business.
“The interesting thing is, it really helps us to have him there—he’s the missing piece of the equation,” Bauman says about Stroik. “He has a great work ethic, he’s teachable, and he’s a cheerful and positive person.”
“In the past, these opportunities didn’t exist,” Gromen says. “Families were told years ago, the best thing to do was to institutionalize their children. Now they have options to live a full life. It’s sort of crashing through past expectations and setting new guidelines for the future that really helps people to live the lives of their choice and meaning.”
HollyDELL, an organization that serves thousands of children and adults with physical and medical challenges, has a Growing Opportunities (G.O.) program—an adult day program for ages 21 and older that serves a variety of people with differences, including a large population with those on the autism spectrum. They teach skills such as personal care, socialization, job training and functional skills like cooking and handling finances. Program director Dawn Gardner says there’s a need for programs like this, especially when these individuals turn 21. They have a waiting list at their Glassboro location, but their newest location in Vineland is not full yet.
“School is an entitlement. After you graduate, the adult world is not an entitlement,” she says. “It is really necessary, not only for the individual, but I firmly believe it helps the family and helps the community that we’re out there.”
With waiting lists at organizations with similar programs, it doesn’t come as a surprise that parents of children and adults with autism take matters into their own hands.
“We as parents create programs and companies around what we know that they need,” Bauman says. “We try and find a peace for them.”
“It’s a calling,” Jensen says. “We know this is the right thing to do. Every day when we see the difference we’re making, we know we’re doing the right thing.”