Owning her disability lets Tillou spread hope and understanding to others

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

— Photo from Rebecca Tillou

“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.

Disclaimer: The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

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