Category Archives: FASD Awareness

Hidden Heartache: Fetal Alcohol Syndrome’s Impact on Adoptive Families

When Barb Clark and her husband Michael adopted their oldest daughter Akila at 5 months old they never envisioned the difficult road ahead. What the Minneapolis, Minnesota-based Clarks couldn’t see when they rocked, fed and loved their infant daughter was the brain damage that she already had because of prenatal exposure to alcohol.

“As soon as she was walking and talking I knew things were a little off,” Barb said. “Consequences never worked for her, and she was 2 years old when she stole for the first time.

An article by Kim Phagan-Hansel of The Chronicle of Social Change

Retrieved from:

Michael and Barb Clark with their four children they’ve adopted. Their daughter Akila lives with a Fetal Alcohol Spectrum Disorder (FASD).

While “stealing” is a typical behavior for toddlers who don’t yet understand the concept, Akila’s early tendency to take things and to not learn from any consequences was concerning to the new parents. Other behaviors such as her high energy, attention-seeking and sleeplessness caused the couple to seek out guidance from medical professionals, but their concerns were often dismissed.

Finally, Barb began researching some of the behaviors online and found sites about Fetal Alcohol Spectrum Disorder (FASD). With research in hand, the Clarks sought out a new pediatrician who was more willing to listen to their concerns about their daughter. Finally, at age 6, Akila was diagnosed with Fetal Alcohol Syndrome.

Akila is one of the thousands of children in this country living with FASD, which is the umbrella term for Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND) and Alcohol-Related Birth Defects (ARBD). While it’s unknown how many people in America have one of the disorders, the CDC estimates that up to 1.5 infants are born with FAS for every 1,000 live births.

Other studies of school-age children estimate 6 to 9 our of 1,000 children have FAS, which puts the occurrence at about half the frequency of autism. But a new study of 6,639 first-grade children by the National Institute on Alcohol Abuse and Alcoholism have bumped estimates to 11.3 to 50 per 1,000 children. According to the CDC, the lifetime [societal] cost for one individual with FAS in 2002 was estimated to be $2 million.

For the Clarks, parenting Akila has continued to be a challenge. They’ve had to learn along the way how to look at their daughter’s behavioral issues differently, recognizing that brain damage causes those behaviors. Over the years, they’ve had to adjust their parenting styles and how they respond to their daughter and her behavior. Even though Akila was 6 when she was diagnosed, it wasn’t easy to shift parenting techniques.

“It still took us several more years to wrap our brains around it,” Barb said. “We’re dealing with children with a brain injury that plays out very behaviorally.”

Now, Barb helps others understand the impacts of FASDs. As parent support coordinator for the North American Council on Adoptable Children (NACAC), Barb trains parents and professionals on a number of topics, including parenting children with FASDs. Much of that training is offered at foster care agencies and to foster parent groups.


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Without screening or supports, offenders with FASD face revolving door of justice

Russ Hilsher is an adult with FASD and has criminal record that goes back more than a decade.  His story just like many other with FASD, he struggles to understand the rule of the law and is in constant contact with the police.  Here is a piece by Kelly Malone  of CBC News

Retrieved from:

Russ Hilsher was diagnosed with Fetal Alcohol Spectrum Disorder as a baby. Now 40, he has been in and out of jail for assaults, thefts and breaching court conditions over the last 15 years. He says the routine and structure of prison worked for his FASD but it also meant he was sharing a space with people who would take advantage of his disability. (Kelly Malone/CBC)

Russ Hilsher’s criminal record goes back more than a decade, to an assault charge in 2003. The 40-year-old has been in and out of jail for breaching conditions, other assaults and theft since.

On paper, Hilsher’s background tells a different story than the one the father of two talks about when he explains how he struggles to understand rules, laws and how to interact with police.

Originally from Ghost River, near the mouth of the Cheepay River in northeastern Ontario, Hilsher’s birth mother drank during her pregnancy. He was taken from her soon after and was diagnosed with Fetal Alcohol Spectrum Disorder as a baby.

As a teenager he landed in a foster home in Winnipeg and struggled to adapt to city life. Hilsher often has a wide smile on his face, but his eyes take on a serious expression when he explains how he interprets the world differently. When Hilsher was younger, if he saw something on the street he would take it. He didn’t think it was theft.

If I could [serve my time] by myself in my own little space I would be alright.– Russ Hilsher

“Like you guys [who don’t have FASD] are knowing it’s not yours, but to someone who has FASD it’s just lying there, so it has to be mine. Why can’t it be mine, right?” Hilsher said.

Eventually that landed him behind bars. Hilsher said the routine and structure of prison worked for his FASD but it also meant he was sharing a space with people who were taking advantage of him. Hilsher said that he would just say “Yes” when people asked him to do things and he would end up getting in trouble, not really understanding that we he had done was not OK.

“It’s almost like if I could [serve my time] by myself in my own little space I would be alright,” he said.

In the prisons and jails it’s easy to mistake somebody’s behaviour as antisocial or oppositional when it’s really a result of having FASD, said Howard Sapers, the independent advisor on corrections reform to the Ontario provincial government and former Correctional Investigator of Canada. And in prison when people don’t follow orders or don’t seem to learn from mistakes, they face more discipline.

“This just creates a very, very negative cycle. And it just reinforces bad behaviour,” Sapers said.

The first thing to do in corrections is to recognize that FASD is a real and profound issue, Sapers said.

Click here for the rest of the news article

Dry9 | Persistent Friend | AGLC – 9th FASD Video Series (Second Round)

Is your friend expecting? Support her, don’t ask her to drink alcohol.  Join Albertans across the province and see how you can support her @ Dry9 at

Fetal Alcohol Syndrome – Anti-Alcohol PSA Educational Video – 8th Video Series (Second Round)

FASD Prevention: Prenatal Visit – 7th FASD Video Series (2nd Round)

Explore the different periods of fetal development and how all types of alcohol can potentially impact the fetus. Watch video the end

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.

6 Things Educators and School Staff Should Know About FASD – 6th FASD Video Series (Second Round)

Children and teenagers with FASD require specific supports that are unique from other developmental disabilities and conditions. Many educators and school personnel have not been trained on these specific needs. If a parent has sent you this video, they are trying to provide you with tools that can help you work more effectively with their child. This video is very general. You can find more information on how to specifically and practically support these skills in our other videos. In particular, please check out our Receptive Communication video at…

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