As I was watching the news coverage around Bell’s Let’s Talk campaign on mental illness, I was struck by the similarities between these invisible disabilities and Fetal Alcohol Spectrum Disorder. As a parent of a daughter with FASD and two other children on the 15 month wait list for diagnosis, our entire lives are centred around this disability. Our 100-acre farm in the country, our children’s alternative schooling options, our work situations of special education teacher and employment counsellor, our network of social services, and our extended family locations are all in place to help our children with their disabilities. Without these supports, we know our children would not achieve the same level of success as other children.
In a study done by Svetlana Popova and funded by the Public Health Agency of Canada, over 75% of people with FASD will struggle with the feel of things like clothing, receiving and expressing communication, noise sensitivities and hearing loss, and ADHD-like symptoms of hyperactivity, inattention, focus, anxiety and anger. FASD also lowers life expectancy by 10 years.
However, a small study done in Alberta placed life expectancy at 34 years due to at-risk behaviour associated with mental illnesses. In a study of 80 birth mothers with children born with FASD done by Astley in 2000, it was found 96% of those mothers had a mental health disorder—with Post Traumatic Stress Disorder being the most common. However, according to the Alberta Clinical Recommendations in 1999, supportive counselling for mothers with a mental health disorder can reduce the risk of a FASD child by more than half. FASD is listed as the number one preventable disability and one of the very few disabilities that can’t be passed from parent to child genetically. Finally, FASD impacts 300,000 people in Canada with approximately 70% of those people living in urban settings to the cost of 4-6 billion dollars per year through health, education, social services and justice systems.
But just like with mental health disorders, FASD is a manageable disability as demonstrated by our amazing children. My oldest daughter is our animal whisperer. Whether it is training the dog, the horses, the donkey, the cows, and the pigs, she can handle them all. Through her high school, she is gaining her credits through workplace environments and at 17 years of age, she knows she does well in outside environments, doing manual labour, avoiding the public and helping animals.
Our middle daughter is the baker and babysitter. With her unlimited optimism, ready smile, and patience galore, she also has found her niche. We are so blessed to be able to come home from work and have supper ready to go. We never are concerned about leaving the children because we know our middle daughter will keep her head.
Our last child is our buddy. He is the one who can watch me do something once and immediately copy it. He is the one who built a table at the age of nine using his hammer, screwdrivers and saw. He will go to the bush and chop down trees for hours.
However, despite their obvious gifts and talents, they also need supports and structure. Every day of the week has a morning, afternoon, and evening routine. They work at places that don’t ask them to problem solve. They get their directions and they follow them. They have technology that figures out money, time and locations for them. They use their computers to read and write. They have tools, strategies and medication to help them cope with anxiety, fear and anger. They also have mentors that help them understand social cues and norms. They all have quiet places they can go to relax, both at home and at school. Finally, they have friends and family who are always ready to step in and listen.
While our children have FASD, it is not what defines them. Just like anyone else, they have their strengths and needs. And just like anyone with a mental illness, they know they can’t do it by themselves. As our First Nations have said for centuries, it takes a community to raise a child. We must always be ready to listen and help. And when we see them succeed, we celebrate their success because we know and appreciate what they have accomplished. And when they or anyone else in our community succeeds, it impacts us all.
If you would like to learn more on how you can help, please attend the 1st annual Eastern Ontario FASD Symposium March 31 and April 1 in Ottawa.
Not only the father of three amazing children, Rob More is a special education teacher and writes a blog called Give Us More Special Needs where he shares his conversations with the Ministry of Child and Youth Services and with his Member of Parliament about FASD. He is also a regular contributor to the Citizen Advocacy site. He will also be sharing his knowledge at the FASD Symposium in Ottawa and will be published in the fall issue of Focus on Adoption. He also runs a summer tech camp for special needs children, Morehaven MakerSpace Camp.