Guilt, shame and redemption: coping with Fetal Alcohol Spectrum Disorder

Annette and Daniel

Annette Cutknife holding her 13-month-old son Daniel in November 1989

The past

Annette Cutknife gave birth to her son Daniel on October 31, 1988. Right away, she knew her son was different.

“The moment he was born he did not make a sound. He didn’t even cry, he didn’t make a noise.”

Cutknife had been consuming alcohol consistently through her pregnancy. “There were no posters, there was no information really on the topic. And the myth that I had heard time and time again was that it was okay to drink after three months into pregnancy.”

As Daniel grew, it became harder and harder to pretend everything was normal. Once Daniel started going to school, Cutknife had to face the truth.

“I got confronted by his teacher. She just told me there’s something obviously wrong with him. She had a whole list of things, like cannot pay attention, cannot follow simple directions, cannot understand him when he speaks. And mainly taking off, sneaking off from the classroom…they would have to get a search party to look for him each and every time.”

For Cutknife, that moment of confrontation brought an avalanche of guilt to the surface.

“I was like, oh my god, I’ve been caught. I cannot lie. I gotta face up to it, I gotta suck it up.”

Daniel is one of approximately one percent of Canadians who have been diagnosed with Fetal Alcohol Spectrum Disorder (FASD). FASD covers a wide range of symptoms, including inconsistent memory and recall, decreased mental stamina, impulsivity and poor judgement, inability to predict outcomes.

In Daniel’s case, he was first diagnosed at the age of six as fetal alcohol exposed — a diagnosis on the less severe end of the spectrum.

“I was really rude and ignorant and I lied…and I told them I drank as little as possible, I maybe admitted to four or five times,” says Cutknife. “The pediatrician took me aside and told me point blank, ‘change your attitude’. He wasn’t rude or anything. He was quite nice. He said, ‘we’re here to help you and your son, we’re not here to judge you, so could you please cooperate’.” Cutknife says despite this, she lied to him about how much she had drunk during her pregnancy.

Cutknife herself struggled as a victim of sexual abuse, starting at the age of five and continuing into her teens. She didn’t talk about those issues until she was in her thirties and continued to struggle with alcohol dependence until Daniel was eight.

“Then I hit my bottom.”

She sought help from a medicine man in Saskatchewan in April 1996. “Three rounds of healing sweats, and but for the grace of god I haven’t had a drink since.”

Once he was 16, Daniel was reassessed and diagnosed with partial fetal alcohol syndrome with static encephalopathy, severe receptive and expressive language delay. During the reassessment, Cutknife provided accurate information about her drug and alcohol use during her pregnancy.

The present

Annette and her son Daniel
Annette Cutknife and her son Daniel in September 2013
Cutknife, now 55, lives south of Edmonton in Maskwacis, Alberta. She’s a FASD program coordinator for Samson Healthy Families, an organization that assists moms with prenatal care, particularly for those living what would be considered a high-risk lifestyle that includes alcohol and drug dependence. She helps those who were in her position every day. “It kind of saddens me that despite the amount of awareness we put out there, that it’s still happening.”

She’s also been speaking openly about her own story since 1998 at conferences, workshops, marches and other gatherings to educate people about FASD. In doing so, she’s had to face both positive and negative reactions. “I’ve actually had amazing reactions, saying I’m courageous and humble. I’ve only received two negatives and they’ve really, really…I felt them. One of them was in Winnipeg, someone in the audience indicated that I may have done it on purpose or something along that line.”

“So it’s gotten to the point now where when I receive a whole package of evaluations I don’t even look at them.”

Although she doesn’t drink anymore, Cutknife still grapples with the deep pain of knowing she exposed her son to alcohol prenatally. “Guilt, shame, self-hate, self-condemnation. I just hated myself to the core.”

“I keep hearing…you must forgive yourself, you must move forward, you must do this, you must do that, but honestly, people just don’t know what it’s like. I would say from time and time again I’ve assessed myself. There’s some days that I have good days, maybe 90 percent would be the tops of self-forgiveness. It’s never 100 percent.”

Cutknife says Daniel himself does not have a full understanding of his condition. “I think he’s slowly understanding, very slowly understanding, bit by bit. He understands that he can’t live alone, he can’t live on his own, he needs a lot of help and he’s just not like his friends are. He knows he’s different.”

Daniel is Cutknife’s only child. Now 25, he and his mother share a close relationship. He loves music, and recently took her to a Rod Stewart concert for her birthday.

“He’s in a concert phase right now,” says Cutknife.

Soon they’’ll be going to a Katy Perry concert — Daniel’s third. “We’ve gone to Vegas to see Katy Perry and Justin Timberlake,” says Cutknife. They’re thinking of going again in December to see Shania Twain.

Annette and Daniel’s photos on Facebook show a strong, loving connection. “I know for me, I’ve sacrificed my entire life making sure he’s well taken care of and that what I’ve done to him…I’ve ensured that I’ve corrected it as much as I could.”

And for other mothers of children with FASD or mothers-to-be, Cutknife has a message to share. “I would share my experience with my son that he was very medically fragile and I certainly wouldn’t want them to experience that, to feel what it’s like to see them suffer. We’re not here to judge you at all, we’re here to help you as much as possible to help yourselves.”

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