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Life with Gracie: DeKalb mom wages fight to help her autistic son

If Rivkah Eidex had her way, Effie would be in his room down the hall, a short distance from the dining room table where she is seated telling his story. Happy. Safe like his four siblings.

And weeks from now when school starts, he’d re-enroll at Druid Hills Middle School, just like last year.

But Eidex has known since he was 9 months old that Effie is different and as much as she’d like, she can no longer care for him. And it doesn’t seem his teachers can either.

“As he got older, he was getting bigger but not learning or progressing, which essentially amounted to getting worse,” Eidex said.

She believes a residential program is what her son needs, but so far the DeKalb County School District has denied her request for help paying Effie’s tuition even though Medicaid is picking up half the bill.

RELATED: Bill proposes raising Georgia’s autism coverage cap

School district officials declined to comment, citing FERPA laws that prohibit sharing information about a specific student. However, in a letter to Eidex in May, officials said the special education staff had determined the least restrictive environment and appropriate placement for (Effie) is Druid Hills Middle School.

When asked why she thought taxpayers should pick up the tab for Effie, Eidex said he hasn’t made any progress in DeKalb schools and that she believes her son would be better off with 24/7 care. Eidex, who says she can no longer care for Effie, plans to file an appeal.

Effie is 14, the middle child in a quiver of five. He is profoundly autistic with the cognitive ability of a 2-year-old.

Eidex, a psychologist in private practice, noticed that as an infant Effie, short for Ephraim, was slow rolling over but didn’t think much of it until his pediatrician suggested she take him to a developmental specialist.

“We thought it was a motor delay,” she said. “The pediatrician confirmed that but suggested he needed some physical therapy.”

She and her husband enrolled the infant in Babies Can’t Wait, a state-funded therapy program.

By 19 months, Effie still wasn’t walking even though he had good muscle tone. His therapist surmised the reason was more likely fear.

Still, they persisted with the physical therapy sessions. By Effie’s second birthday, he had started repetitive purposeless behavior such as walking around the coffee table over and over and over. The few words he had acquired started to disappear.

“As the mother of three and a psychologist, I knew that was not normal development,” Eidex said.

At the time, Effie was enrolled at Beth Jacob preschool at the family’s synagogue. One of the teachers there noticed he wasn’t doing things like the other kids.

The Eidexes took him back to the pediatrician at the Marcus Institute. She wasn’t ready to diagnose autism but told them to proceed as if she had.

“The words came down like a lead balloon,” Eidex said. “My husband was devastated. He knew it wasn’t good. I was in denial.”

At home, Barry Eidex went right to bed. The next morning, he started researching autism.

“In two days, my husband had transformed into a powerhouse of information on the subject,” Eidex said.

Therapists began coming to their home. State caseworkers explained available benefits. Effie was enrolled in an early intervention program at the Marcus Institute, now the Marcus Autism Center. In September 2005, the Eidexes’ fourth child - another son - was born, and a month later a slot opened for Effie at Emory Autism Center’s Walden Preschool.

“I’d been practically stalking the director. When they called, I was over the moon,” Eidex said. Not only was Walden open 8 a.m. to 6 p.m. five days a week, 12 months a year, it allowed typically developing children to model age appropriate social behavior for the students with autism. At the time, 98 percent of its Pre-K grads were being mainstreamed into regular kindergarten. Effie wasn’t one of them.

The following year, Effie was enrolled in a DeKalb special needs class. After school, he attended the Language and Learning Clinic at Marcus, where he learned, among other things, scripted phrases like “what’s your name?” “what’s your phone number?” “your parents’ names,” things he could tell a policeman if he were lost.

Meanwhile, Effie was getting bigger and stronger. Yet he had the coordination of an 18-month old. He could only feed himself with his hands. He wore diaper pants because he wasn’t toilet trained.

It was a habit of his to spread excrement on the walls and floors; to take food from the refrigerator and freezer and strew it throughout the house; to just take off running.

“Our home was always on edge,” Eidex said.

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They tried locks on the fridge and out of fear for his safety, reverse locks on his bedroom door.

Eventually, Effie’s parents separated, which left his mother to go it alone most days. Trying to bathe Effie was the toughest, she said. More than once, baths ended with her bruised and battered.

By 2015, it had become pretty clear Effie needed more than she or DeKalb could offer him.

Eidex started a search for residential schools. There were none in Georgia for Effie, but she eventually found five, including Bancroft in southern New Jersey near Philadelphia and close to extended family and friends.

Bancroft had been around more than 40 years, had a good reputation for caring for kids with special needs and autism and was building a state-of-the-art brand-new facility scheduled to open in 2018.

Effie would have the best of everything and they had an opening. There was only one problem. It would cost $200,000 a year, just under $600 a day.

RELATED: Atlanta mom starts high school for children with autism

After many months of research and advocacy by Eidex, the Georgia Department of Community Health agreed to cover Effie’s room and board at the school – about $100,000 - but requests to the DeKalb School district for the remainder have been denied.

Fortunately, an anonymous philanthropist has offered to pay Effie’s tuition for one year and Eidex has launched a youcaring page to raise funds for next year’s tuition as well as to rebuild their lives here. Seven weeks ago, she took Effie to Bancroft and is already seeing some improvement in his behavior.

His bathroom accidents are less frequent, and they are working on phasing out use of diaper pants.

“It broke my heart to leave him, but I know he won’t be locked in a room alone all night anymore,” she said. “He will have people with their eyes on him at all times. It gives me incredible peace of mind.”

Family and friends have visited Effie several times already and even used video calling so Effie and his mom can see one another. “The residential staff calls me every night to give me a recap of Effie’s day and let me say good night to him.”

But Eidex is naturally worried about what might come next.

“There’s a long way to go to convince the district to pick up the tab once the year is up,” she said.

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