Fueled by coffee, Tara Cohen negotiated with garage sale shoppers rummaging for a bargain on a foggy Saturday morning. Instead of doing an unseasonal spring cleaning, she was preparing to uproot her family in search of a better life for her son.
Scattered across the sale were worn mattresses leaning against landscaped trees, clothes dangling from the garage ceiling by plastic hangers and children’s toys in Huggies cardboard boxes. None of them will go with Cohen, 37, and her grade-school children when they move to California this December to get better health care for Cohen’s disabled 7-year-old son Will.
Will was diagnosed with severe autism, Obsessive-Compulsive Disorder and other challenges at 22 months old. He is considered preverbal, meaning he can make sounds, but he can’t speak.
With proper treatment, Cohen said, he might be able to talk someday, but cutbacks in state funding have kept Will from getting the expensive therapy he needs.
“He had 10 words and lost all of them,” she said, holding back tears. “He never said mommy.”
Will starts his day like any other 7-and-a-half-year-old: breakfast and a rerun of “Madagascar 3” at an early start of 6 a.m.
Rather than a sugary bowl of cereal, Will eats a blend of fruit-based Gerber baby food, gluten-free Rice Krispies, rice powder, and a mix of vitamin supplements and medicine. The meal isn’t cheap — it costs Cohen about $700 a month.
A good day for Will means a few screams, but no tantrums. On one occasion, when he calmed down, there was a dent the size of a soccer ball in the wall.
Clutching his favorite toys, a worn, green strand of yarn wrapped in masking tape and a CD, Cohen drops him off at a special needs classroom for the day.
After school, Will hops on the bus with Nicole Reed, a 21-year-old UF family, youth and community sciences senior and Will’s personal counselor at the North Central Florida YMCA.
In a room bound by red, green, yellow and blue walls with a soft, puzzle-piece floor, Reed is a constant face in Will’s day-to-day life.
“I spend more time with him than anyone else in my life,” she said. “The day they leave, it’s gonna be pretty sad.”
Most days, Will fills his day by playing on the swing set, swimming and yelling in small spaces to hear an echo. Sometimes, he’ll lash out at Reed, particularly if he’s upset that something has disrupted his rigid routine.
Reed said she’s noticed that Will’s behavior has changed lately, but she’s unsure if it’s because Will sometimes doesn’t have his iPod touch, which helps him tune out, or if it’s because he has access to less therapy now.
“I can see it in his eyes that it’s never malicious,” she said.
She calms him down and tickles him behind his knees, his most sensitive spot. A grin with missing front teeth lights across his face.
Last year, Gov. Rick Scott ordered immediate budget cuts to the state’s Agency for Persons with Disabilities, according to the Orlando Sentinel. Cohen said that although her child should be receiving 20 to 30 hours of therapy a week, he only gets two hours of therapy at school: one for speech therapy and one with an occupational therapist.
She made the decision to move to California this summer when those two hours were cut, too.
“Any politician who balances his budget on the backs of kids with disabilities is a disgrace to our nation,” Cohen said.
Cohen, who doesn’t qualify for Medicaid, said her Blue Cross Blue Shield insurance only covers 20 sessions a year. In California, Cohen said there are state-, county- and school-sponsored services.
“In Gainesville, I had to fight tooth and nail for two hours of therapy,” she said. “In California, I will fight for 25 to 20.”
The Cohens began working with Cathy Zenko, coordinator for education and training programs at UF’s Center for Autism and Related Disabilities, shortly after Will’s diagnosis five years ago.
Zenko said the center, which serves 2,500 constituents in 14 Florida counties, has been suffering from state budget cuts since 2006. Fundraisers like the annual Stomp the Swamp were organized to subsidize lost funding.
Zenko said she’s seen families get into a lot of debt from borrowing money to get their childern therapy. Some stop completely.
Cohen has lived in Gainesville since 1999. Raised in California, she’s moving to the Los Angeles area where she has family and business connections.
“For me, it’ s going home,” she said.
Cohen, a full-time freelance marketing writer, took out a second mortgage on her southwest Gainesville home to pay for her son’s needs. She said her credit is destroyed and her house is in foreclosure. She also filed for divorce last month.
“When your kid needs something, you spend everything you have,” Cohen said. “I would make that choice 1,000 times over.”
Cohen said she would host another garage sale next month. A friend has also set up a donation website, www.giveforward.com/helpingtara, for her move.
“I’ve never in my life been good at accepting help, much less asking for it,” Cohen said.
Moving expenses will cost her $5,000, but she is setting a combined goal of $30,000 for rent because she cannot work until months after the move — she must acclimate her son to his new life, new doctors and therapy sessions.
“We spent every last dime helping our son,” she said.
Will Cohen plays with Nicole Reed, a 21-year-old family, youth and community science senior, who cares for Will after school as his personal counselor. Reed has spent 20 hours a week with Will for the last four months. “I’m blessed that I’m a one-on-one,” Reed said.
