The front door of Julie Barnett’s house on Long Island had double-sided locks, closed at all times. Except one day, when her son Alex took his scooter to the train station and went five stops east on the LIRR (Long Island Rail Road). Julie still remembers the angel standing on the platform who called the police before he made it any further.
Before Alex was diagnosed with autism at 18 months, there were signs. Alex didn’t turn his head when his name was called. Alex had missed enough milestones to bring about some concern. The president of a known agency evaluated Alex at home one afternoon. As Julie learned over the phone that evening, they didn’t need an overnight deliberation to make the diagnosis.
When Julie’s minivan turned onto Education Lane in 2022, she got the feeling right away. Julie was touring the Anderson Center for Autism, but really, she didn’t need to get out of the car. As the gate lifted, the weight on Julie did too. This little town in Staatsburg would be the best place for Alex.
With autism, hospital stays are different. They mean sedation, a care team doing what they can to make everyone in the room comfortable. Carnival days require an extra patrol. Because Alex won’t say that he sees something interesting, and he’ll be going to take a closer look. If nobody sees him go, a shutdown of the grounds, maybe a call to the police, is soon to follow.
April is Autism Acceptance Month, but parents like Julie have a daily awareness – twenty four hours spent advocating and sleeping with an eye open. Holidays and everyday occasions bring challenges that other individuals don’t need to think about. Like when Halloween candygivers admonish children who avoid eye contact at their door. Or kids growing impatient as a trick-or-treater searches a bowl for one special candy.
For babies born on Independence Day, fireworks are a common birthday treat. Not for Alex. “
You don’t think you’re going to have a kid with autism that’s going to be affected by stuff like fireworks,” Julie said.
Advocacy is Julie’s game since Alex was diagnosed. Autism was something she had heard of, but she didn’t know anyone whose child had it. From early intervention to one-to-one aides occupational therapy (OT), she has gotten Alex what he needs.
As the first autistic student to go through his Long Island school district, Alex was the guinea pig for behavioral support services. It was clear Alex needed more than what public school could offer, so Julie enrolled him at BOCES. Smaller class sizes, less time at a desk, and the chance to park in a beanbag and catch up on much-needed sleep. Children with autism and their parents do not get those full eight hours.
Alex loves his DVDs. He might not watch the whole movie, but he’ll organize them by category, open them up, and check out the DVD guides cover-tocover. He’ll reproduce DVD guides with full scenes and extras.
Alex’s family – Julie, brothers Joe and Cooper, and Julie’s fiancé Steve – have taken turns helping him create such renditions. No detail goes overlooked. There’s a touch of Alex in everything he does, from DVD guides to Lego sets. The Lego collection lives 20 minutes away from Anderson, in the home Julie and Steve moved into last August. Julie always planned to follow Alex like she would on Long Island, matching his moves on her own scooter.
In the little town on Anderson’s campus, where brightly colored houses sit among century-old architecture, Alex has the chance to thrive. The trained staff at Anderson uses Applied Behavior Analysis (ABA) in all learning contexts. In ABA methodology, observed behaviors are studied to address responses. Each approach is tailored to the individual.
There’s a library, gym class, the pool, and opportunities to enjoy all four seasons of the Hudson Valley. This includes a pond for fishing, plus a prime view of the Hudson River and an ice cream truck that doubles as a hot chocolate machine on wheels.
But it isn’t just a school. They teach life skills and lasting tools for productive lives.
Everybody has a role at Anderson, whether it’s a job taking inventory, janitorial, helping deliver supplies to buildings, or other roles necessary for Anderson’s daily operations. Some have opportunities to participate in work programs within the community.
Julie gets misty when talking about her appreciation for Anderson. It’s immense gratitude for the compassion, support during the ups and downs of the last twoand-a-half years since Alex moved in. When Alex turns 21, he will stay at Anderson until he’s ready to transition to the next right fit.
Not every family has the option for Anderson’s lifelong learning. Not every family gets hugs like the mushy kind that Alex gives his mom. Some travel crosscountry for these services, and a day trip to SplashDown isn’t feasible. Others don’t see certain milestones firsthand, like the first time Alex said he wanted ice cream.
Julie’s advocacy continues as the officer-at-large for the Anderson Family Partners. She describes it as the Anderson PTA, a welcoming committee for the families who come through. Everyone has a different reason for coming to Anderson, and each can lean on others who have been in the same shoes. Together they laugh, cry, and share things that few parents will understand. Like when Julie’s neighbor knocked on her door to say, Alex has found his way onto the roof. Some parents would be horrified, pass judgment. Autism parents’ support groups say, “I’ve been there.”
Where Alex used to be coaxed to the movie theater for the popcorn and candy, he’ll now sit for the entire screening. The SEND US YOUR NEWS staff at Anderson told Julie that Alex is even eating salad, plus Jamaican patties and pickles. Julie recounts it with equal parts of wonder and amusement, and a shrug of, “That’s my Alex.” He’s 16, loving, happy, and secure in the routine at Anderson Center. Dinner at Julie’s house better be cooking at 5 p.m., or Alex will get the pans ready himself.
Each mountain on the horizon, turkey, and deer in her backyard remind Julie she’s made the right decisions every time she buckles in to see Alex. Walkway Over the Hudson has become the backdrop for family memories. The “Mom Van” that traversed camping trips and Cooper’s college visits now pulls into Stewart’s on the way home from the latest adventure.
With Julie’s and Alex’s matching scooters in the trunk, the family continues the journey.