Santa Rosa program eases autistic adults into life's daily routines
Out of place.
It’s an awful way to feel. An adult with a significant degree of autism may want to flee a social, retail or work situation that seems perfectly agreeable to everybody else in the room because he or she is tormented by the slight flickering of a fluorescent bulb, or the irritation inflicted by a particular voice or background noise or bright color, or the frustration of just not fitting in to conversations.
At 36, Sean Daigle of Rohnert Park has lived since birth with the limitations imposed by both cerebral palsy and the highly prevalent, largely mysterious developmental disorder labeled as autism. More functional than some people on the autism spectrum and less so than many others, Daigle may never be able to live independently.
But he and his mother and caregiver, 63-year-old Wendy Mottola, say he’s doing much better since he enrolled in Passport to Independence, a new and cutting-edge educational program in Santa Rosa for adults with autism.
There may be nothing else in America quite like the thoughtfully designed space and curriculum at the Becoming Independent campus off of Sebastopol Road. Created and staffed with dollars from eight founding sponsors, the autism center features subdued paint colors, sound-absorption wall treatments, muted lighting, highly interactive technology and places to go when distractions and internal pressures become too much to bear.
Teacher Juliana Baumgartner, a graduate of Sonoma State’s Collaborative Autism Training and Support program, gives each student a laminated card that reads, “Excuse me while I take a break from reality.” They can use it if they find it necessary to take a breather from a class or activity.
Passport to Independence focuses on working with autistic adults in a highly individualized manner to help them understand their diagnoses, regulate anxiety, communicate and function better in public and social settings and, to the greatest extent possible, navigate life independently.
Daigle, an amiable, tall and dark-haired man, said from the apartment he shares with his mother that he learned in the program how to speak more clearly to people working at a coffee counter.
Also, he said, “They’re teaching me budgeting with my money, so I don’t spend it all in one place.”
His mother said the progress her son showed after just eight weeks in the program’s pilot class astounded her.
When the people at Becoming Independent invited sponsors to come see the newly completed autism center and hear the specifics of the curriculum in February, Daigle agreed to speak to the guests. Prior to the instruction and reinforcement he received in the pilot class, his mother said, he never would have addressed an entire group of people.
“I can’t describe the difference in Sean,” Mottola said. She said he’s become more comfortable around people and better at carrying on “let’s say, full, coherent conversation.”
Though consistency and follow-through have been difficult for Daigle, he never missed a class at Becoming Independent. And, his mother said, the positive attention and coaching have seemed to boost his confidence.
He also developed friendships with other students, Mottola said, though personal relationships have never come easily to him.
“The most important thing,” she said, “is he is much happier.”
Her son’s well-being and ability to make his way through life is especially important to her because she knows the day will come when she isn’t here to assist and take care of him. That’s something that weighs on every parent of a child with a disability that may leave him or her incapable of living independently.
Mottola’s other son and his wife have said they are willing to take in Daigle, which comforts his mother. But still she wants him to live as full and engaged and self-directed a life as is possible.
She said she’s deeply grateful to the new Becoming Independent program for helping to make that so. She appreciates that CEO Luana Vaetoe and lead autism-services manager Kaela Talafili could not simply purchase a comprehensive program off the shelf, or duplicate another one operating elsewhere in the country.
“They had to invent the wheel,” Daigle’s mother said.
At Becoming Independent, Vaetoe said agencies that serve people with disabilities are just now beginning to rise to the challenge of addressing the needs of young adults on the autism spectrum.
“Nobody could show us the core fundamentals to start with,” Vaetoe said.
Though Becoming Independent has worked for nearly 50 years to help people with disabilities learn vocational skills, integrate into the community, express themselves through art and run their own lives to the extent possible, the Santa Rosa-based agency is new to the field of specialized services for autistic adults who might not function well in the other programs.
Talafili visited other autism programs around the country and brought the best elements home. Becoming Independent designed a teaching approach and a classroom complex, and reached out to the community for the money to make it real.
Eight donors contributed a total of $550,000 in startup funding. The largest single gift came from the Ernest L. and Ruth W. Finley Foundation, followed by donations from the Flat Tire Club, John Jordan Foundation, BlackRock investment management, Dome Construction, Press Democrat Community Partnership, Sonoma Wine Country Weekend and Community Foundation Sonoma County-Healdsburg Area Fund.
Becoming Independent expects that about 40 students per year will be accepted into the program, and that the costs of teaching them will be covered by the state-funded North Bay Regional Center.
The instruction offered is highly personalized because autism shows itself so differently from person to person diagnosed as being on the spectrum. As Sean Daigle’s mother said, “If you meet one person with autism, you’ve met one person with autism.”
Vaetoe said the objective of Passport for Independence is for high-functioning adults with autism to spend a year moving through the six eight-week themed courses and to improve, within the safe and calming environment, the skills that will enable them to succeed outside in public, social and work or volunteer situations.
“That will be the proof in the pudding - what these guys are able to do,” Vaetoe said.
The prospects are exciting for Daigle’s mom.
“I just feel, for the first time, a great relief,” Mottola said. “It’s his best chance for a good quality of life.”
Chris Smith is at 521-5211 and firstname.lastname@example.org.