BONNYVILLE – Annette Cutknife came to the Bonnyville FCSS to share her presentation Living with FASD 24/7: Our Story of Hope.
Annette is from Maskwacis (Samson Cree Nation), where she works as a FASD (fetal alcohol spectrum disorder) coordinator. She and her son Daniel Cutknife, and adopted son Floyd Cutknife (Baptiste) both live with FASD, and accompany Annette on her presentations, sharing their stories, songs, and dance with audiences. Annette has been doing presentations for 26 years.
Floyd performed an opening song with a drum, which was taught to him by his grandfather. His powerful voice filled the small room.
Daniel, also known as Zombie Eagle 7, has 121k followers on Tik Tok. Daniel performed an upbeat dance for the audience.
Despite the heavy topic, Annette, Floyd, and Daniel all managed to bring joy and laughter to the audience and welcomed conversations after the presentation.
Annette not only overcame her addiction but also faced the stigma surrounding FASD while sharing her story publicly and becoming an advocate. She acknowledged a higher power for giving her the strength and courage to speak publicly about such a sensitive and emotional topic.
“There is no safe amount of alcohol to drink at any time during pregnancy. I want to prevent it from happening to others, and sharing our story is preventative,” said Annette.
She explained that while Floyd has his own apartment, Annette is still a full-time caretaker to 36-year-old Daniel, which is why she titled her presentation Living with FASD 24/7.
“When I was presenting with Health Canada, someone asked me if there was something that would have helped in early pregnancy. I think that this topic should be learned about in sex ed. Had they mentioned the dangers to me, I know I would have made the right choice.”
When Annette became pregnant with Daniel, she was studying to become a paralegal at Red Deer College, and part of her training involved keeping meticulous records of everything she did on a daily basis, resulting in her having accurate data on her alcohol consumption over the months.
Annette had a graph made of her prenatal alcohol intake that she has started to share during presentations, and explained that she was a binge drinker, which has been found to be the most dangerous type of drinking for FASD.
“In the early 80s, there weren't any of these FASD awareness posters we see sometimes in restaurants . . . Back then there was really no talk about the dangers of drinking while pregnant. The only information I got was from my mom. She was a CHR worker at the health centre and the information she gave me was just a myth, which is it's okay to drink in your second and third trimester, but definitely not in the first,” which is not true.
Annette said she doesn’t want anyone to go through what they have gone through and what they are still dealing with, and believes it is preventable through education, healing, and talking.
Annette spoke about the physical traits of FASD, such as a smaller head, or lack of a philtrum, but more concerning was Daniel’s intense medial history and frequent hospitalization. He has been under anesthesia more than 25 times, and Daniel has had many surgeries and medical concerns he continues to deal with.
FASD is not just a brain issue, it affects the entire body.
“Daniel is medically fragile. He has no immune system . . . He was hospitalized at least 30 times by five years old . . . He would catch the slightest cold. I had to keep him secluded – away from public places and relatives coming to kiss him. It was so hard.”
Daniel was born with ear abnormalities, and the outside of his ear was later corrected with surgery. Annette showed baby photos of Daniel, and pointed out that she had let his hair grow over his ear.
“I wanted to protect him. I didn’t want him to be stared at. I was in denial for the first 6 years, and I didn’t want to be judged.”
When Daniel was six years old, a teacher reached out and told Annette there was something wrong.
"The first thought I had was ‘Oh my god I’ve finally been caught.’ There’s no hiding anymore. I had to face it.”
The teacher spoke about Daniel’s difficulty following instructions, his lack of fine motor skills, and not being able to properly speak.
Annette realized the severity of the situation. She found it within herself to face the reality and decided she was going to have to become a strong advocate for her son.
Annette brought Daniel to the doctor for an assessment.
“I told them that I consumed maybe three sittings or four sittings. They probably could see right through me and knew that it was more than that, but I didn’t want to admit it.”
Annette said the doctors persisted in asking questions, telling her they were trying to get to the bottom of the situation.
“I had to have another serious talk with a doctor . . . We stepped out and he said ‘I noticed you’re really agitated and angry. We don’t want to get you angry, we’re just here to help you. Please cooperate with us so we can get an accurate diagnosis. We are here to help you both.’”
Annette complied and got an initial diagnosis for Daniel.
"He was eight years old when I sobered up and started getting accountable,” said Annette, who has been sober since April 1996.
Daniel was given a teacher’s aide but continued to struggle in school resulting in a major meltdown.
“I had to go into the school and explain to them what was happening. They didn’t know the term FASD. I took binders of information and strategies for the teachers to learn about this issue. They were quite thankful for the updated information.”
Something particularly difficult for Annette was seeing how hard it was for Daniel to maintain friendships, even with family. This had a big impact on his mental health.
Today, Annette says Daniel has maintained a friendship, and his brother Floyd sticks by him. Additionally, he has a loving bond with their dog, Hunter, not to mention the amount of internet followers he has.
Daniel is determined to get his driver's license. He has been going to the Horizon Centre in Wetaskiwin, where he has been learning life skills and getting some employment, though his next goal is to get his own job.
Floyd spoke to the crowd, sharing his heart wrenching story of child abuse, which lead him into a series of foster homes where he was physically, sexually, emotionally, and spiritually assaulted.
“My foster mother told me that my family was not going to love me or care for me, and they just wanted money. I was floored. I didn’t believe her.”
When he was 18, he went back home and moved back in with his grandparents, then back with his mother. To deal with the trauma of his past, he began drinking.
“I had to move out of there because my mom was still dealing with her demons from being in day school. I woke up sick and sorry and tired of the way I was living."
Hungover, he managed to get to Annette’s home, and she took him in for a couple weeks, before making the decision to adopt him.
Floyd continued to struggle with his sobriety until he was finally accepted into a treatment program.
“I cried knowing my life would be changed forever.”
He added, “I encourage you to have a healthy pregnancy. You don’t want children growing up in a world of confusion.”
