Owning her disability lets Tillou spread hope and understanding to others

Rebecca Tillou

— Photo from Rebecca Tillou
Her moon, sun, and stars: Rebecca Tillou smiles with her sons, Dominic and Nicholas Tillou.

VOORHEESVILLE — Rebecca Tillou lives with fetal alcohol syndrome but doesn’t let it define her. Because her mother was an alcoholic, she was born addicted to alcohol.

At 38, she’s a happily married mother of two young boys and works at a job she loves.

She calls fetal alcohol syndrome an “invisible disability,” and it took most of her lifetime to find out that is what she suffered from.

“I was adopted at one month old in New Jersey … Doctors told the agency I was healthy,” said Tillou, launching into her life story.

Many years later, she searched for her birth mother and discovered she had died in 1999. Tillou learned from her mother’s co-workers at a bar that she had been a “chronic alcoholic” and been drunk when she gave birth. The adoption agency said her birth mother hadn’t known she was pregnant and had had no prenatal care.

Tillou was adopted by the Kulaks, whom she describes as loving and supportive, and was brought to their Maryland home. “I was sick. I had bronchitis and ear infections, was constantly on antibiotics, and didn’t eat for a year. I had failure to thrive, and didn’t gain weight.”

In 1980, a pediatrician noted she had facial features typical of people with fetal alcohol syndrome — she had palperbal fissures, a shortened distance between the left and right corners of her eyes; she had a thin flat upper lip and no indentation between her lip and her nose, known as a smooth philtrum.

But as her health improved after tubes were put in her ears, she began to eat and started growing. She worked hard in school and did well. “But I struggled with math and writing cohesive sentences,” she said.

The Kulaks’ household ran on steady routines, which was just what she needed. Tillou was a quiet girl who often talked to herself. She was immature for her age and was often seen as quirky.

Tillou had social and emotional difficulties. She was impulsive, jumping from one thing to another. She had trouble with personal boundaries, telling everything to everyone, even personal things to people she barely knew.

She also craved attention, and thought for a long time this was because her birth mother hadn’t wanted her.

She went to the State University of New York College at Geneseo where she earned a bachelor’s degree in speech pathology. It’s also where she met and fell in love with the man who became her husband, Jason Tillou.

“I wanted to work with kids that had speech difficulties,” she said. To that end, she went to The College of Saint Rose in Albany for a master’s degree.

“I struggled with writing reports. I failed. I didn’t finish,” she said of completing the degree.

She also struggled with student teaching. “I couldn’t put together a cohesive lesson plan.”

In 2014, at the age of 34, Tillou was finally diagnosed with fetal alcohol syndrome by Dr. Natasha Shur, a pediatric geneticist. Shur saw things that other doctors had missed. Tillou’s head is child-sized, her face still has a thin upper lip and there are slight palpebral fissures to both eyes, she has hockey-stick formations on both palms, and hypoplasia of her pinky toes — neither has toenails.

“She diagnosed me and everything made sense,” said Tillou.

The need she had to feel wanted all the time, which she had attributed to being adopted, as well as her academic difficulties, for which she had blamed herself, could now all be understood as typical of fetal alcohol syndrome.

Tillou wrote a book called “Tenacity” about her struggles to understand not just her biological roots but herself. And she also made a video to inform and inspire others.

She now works for an insurance company with a manager who has been supportive. “When I started there, my boss saw I was struggling … I decided to tell him the truth. I told him maybe we can work together. He was cool about it … He knows I’m a visual learner.” Although she was slower than others learning her job, she now does well at it.

Tillou is part of the National Organization of Fetal Alcohol Syndrome and was asked to write a letter to a newspaper about the syndrome. She wrote in her letter to the Enterprise editor this week, “The trouble is, while our close family and friends, and even our educators may understand us and how to handle our shortcomings, much of society does not.”

Tillou says of her reasons for writing the letter, “I’d love to make people aware of this, get into classrooms, whatever it takes.”

She explains that Fetal Alcohol Spectrum Disorder is an umbrella term that encompasses her condition, fetal alcohol syndrome, along with others. “I have the facial features, which only 5 percent have,” said Tillou.

FASD is the number-one cause of preventable disabilities in North America, according to the national organization, which also says that, when unsupported, 70 percent of people with FASD will be institutionalized sometime in their lives for alcohol and drug problems, mental health reasons, or crimes committed due to their impulsivity and vulnerability.

According to the Centers for Disease Control and Prevention, it is not known exactly how many people have FASD but CDC studies have shown that 0.2 to 1.5 cases of fetal alcohol syndrome occur for every 1,000 live births in the United States, and scientists believe that there are at least four times as many cases of FASDs as FAS.

The organization also says that providing support for an individual with FASD would reduce costs to the public of over $2 million per individual.

Tillou says that, when she was growing up, she got the support she needed from her family. “I was raised by an incredible family that had structure,” she said.

She now also gets love and support from her husband, Jason, whom she calls “My rock and my voice of reason.” She says her two sons, ages 5 and 10, make her realize how blessed she is. She calls them her “moon, sun, and stars.”

But every day, Tillou faces challenges.

“I know my quirks. They become pronounced in chaotic situations … I get very impatient.” She gives an example, typical of motherhood.

“My little guy spilled milk one time and I yelled, and I felt really bad I had … It was just milk.”

Tillou has a motto that she says comes from “when I read those characteristics about FAS and realized I had the disability.”

This is her motto: “If my tears of realization can be someone else’s tears of hope, then I have been successful.”

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