At FNHA, we recognize Sept. 9 as Fetal Alcohol Spectrum Disorder (FASD) Awareness Day, an opportunity to raise awareness, improve prevention and diagnosis of FASD and to build understanding of this lifelong disability. Marie Wilcott, Healthy Children Specialist and a recent addition to the FNHA team, shares her family’s personal story.
I became a mother shortly after turning 19. Before I knew I was pregnant, I drank alcohol on the weekends. As soon as I learned I was pregnant, I immediately stopped drinking.
Like many young mothers, I did what I believed was best with the knowledge I had at the time. I did not realize that alcohol exposure early in my pregnancy could affect my baby’s development.
When my daughter was born, she was the most beautiful and perfect baby girl. She weighed seven pounds, two ounces and had a full head of beautiful jet-black hair. There were no visible signs of any disability.
As a baby, she was difficult to soothe. As a toddler, she was extremely active and began walking at nine months. As she grew, friendships became challenging and she often struggled to understand the consequences of her actions.
At that point in time, I did not have the knowledge or understanding to recognize these experiences as a possible sign of fetal alcohol spectrum disorder. More commonly known by its acronym, FASD is a lifelong disability that affects the brain and body of people who were exposed to alcohol before birth.
Sometimes known as the “invisible disability,” FASD can be difficult to diagnose, especially for children like my daughter who looked like a typical child.
When my daughter was five, our family doctor suggested Ritalin, a medication commonly used to treat attention deficit hyperactivity disorder, or ADHD. I declined because I was afraid it might change who she was. Looking back, I recognize that I did not have enough information about medications or the ways it might have supported her quality of life.
Instead, I relied on teachings passed down by my Granny, particularly the importance of unconditional love. I learned to be patient, to try to understand my daughter rather than judge her. Although some of her behaviours could be challenging, she was incredibly special to me, our family, our friends and our community.
There were many moments when, as a single mother, I sat crying on the kitchen floor and wondered how much more I could do. In those moments, I prayed, and then I kept going.
My daughter was diagnosed with FASD at 16. By then, I understood that I had been learning alongside her. Parenting a child with FASD requires patience, understanding, advocacy, flexibility and above all, love. I also learned that the behaviours we see do not always tell us what a person is experiencing and feeling on the inside.
Everyone Plays a Part: It Takes a Community
FASD is a lifelong disability affecting the brain and body. Each person has distinct strengths and challenges and may require different supports throughout life.
Understanding can help us respond to behaviours with compassion rather than judgement. Consistent routines, patient guidance, supportive relationships and a strong sense of identity and belonging can help people living with FASD succeed.
Culturally safe support also means recognizing the continuing effects of colonization and intergenerational trauma while replacing blame and shame with compassion, understanding and hope.
On FASD Awareness Day, I raise my hands to the parents, caregivers, families, educators, professionals and communities walking alongside people with FASD. Everyone deserves to feel valued, respected and supported.
Supporting individuals with FASD and encouraging alcohol-free pregnancies are responsibilities we all share. Together, we can build communities where people feel respected, supported and empowered to thrive.
Resources and supports for individuals, families, caregivers, educators and communities
Improving Prevention and Support for People Living with FASD
Asante FASD/Neurodevelopmental Services – PLEA Community Services