Middle school student Sebastian Gould appeared before the Central Okanagan Board of Education last Wednesday to shine a light on the struggles and victories he experiences daily as a student diagnosed with Fetal Alcohol Spectrum Disorder (FASD).
Sebastien, a Grade 6 student at Constable Neil Bruce Middle School, talked about how the learning pathway for students with FASD is different from other students and often get misunderstood, from short-term memory loss to acts of aggression.
His appearance came in the aftermath of a CUPE Professional Development Day, which also included Central Okanagan Teachers Association members, held Feb. 16 which addressed issues faced by FASD students and how school district staff can respond to those challenges.
Sebastien was joined for his presentation by his mom Lisa were joined in the presentation by Michelle Kaupp, Central Okanagan Public Schools district principal — inclusive education, and Cori Christensen, inclusive education consultant.
During the professional development day, Sebastian had an opportunity to interact with the keynote speaker Myles Himmelreich, someone who still struggles with FASD symptoms as an adult and has become a motivational speaker, helping others to better understand the disability.
He cited his three noteworthy takeaways from the conference were reinforcement that he can “get to the same place as others even if I have to do things differently to get there;” listening and learning from the shared experiences Himmelreich talked about in his life; and “to share the advantages that work and disadvantages that don’t work for kids with FASD.”
“If I had one wish, it is that FASD people stay strong and brave. Never give up and try our best every day,” he said.
Jon Rever, Central Okanagan Public Schools assistant superintendent, cited Sebastien’s leadership in appearing before school trustees to help teach adults about FASD and for him to use his voice and influence as a student to help others “is just amazing.”
Trustee Valene Johnson touched on that same theme, telling Sebastien that speaking up about his life story is not only helping him, but also “helping everyone around you” in the process.
While the symptoms and learning challenges of autistic children has become better understood, FASD still remains largely misunderstood despite its prevalence being four per cent higher among students than autism.
In a past interview with the Coastal News, Himmelreich talked of the need to normalize the conversation around FASD.
“There’s so much stigma and shame and blame around FASD. There’s no reason we should be afraid or scared to talk about it,” he said.
Himmelreich has known he was living with FASD his whole life, but he didn’t actually start to understand it until he started going to conferences, learning about it and being able to connect it to his own experience.
“I didn’t fully understand the exact differences between myself and other kids,” he said.
“But I do remember in elementary school, probably about Grade 5 is where I started thinking that I acted weird and different than the other kids and I didn’t understand why.
“I didn’t know why I couldn’t control the way I acted. I just did it, and then right after I did it, I would be like, ‘Why did I do that? Why would I act that way?’”
He explained that most individuals affected by FASD are not diagnosed until adolescence or adulthood, if at all.
Often the diagnosis only comes whey a child’s behaviour leads to various testing, and FASD is often referred to as an “invisible” disability for this reason, but Himmelreich doesn’t see it this way.
“Regardless of whether or not a person presents any physical signs of the disability, we can see FASD once we know what we’re actually looking for,” he said.
“FASD can incorporate processing issues, sensory issues, cause and effect, struggles with concrete and abstract, and chronological versus developmental age. We can see those things, but unfortunately society will see many of these things as bad behaviour and jump straight to punishment.”