St. John’s mother is frustrated after years of trying to secure proper care for her adopted daughter, a child with fetal alcohol spectrum disorder and complex mental health needsPublished Oct 15, 20259 minute readA St. John’s mother is desperate to get her daughter the help she needs. Her daughter, who she adopted, was born with fetal alcohol spectrum disorder and complex mental health needs. UnsplashArticle contentA mother in St. John’s has spent years trying to secure care for her adopted daughter, who has fetal alcohol spectrum disorder (FASD), while pursuing answers about other possible underlying conditions.THIS CONTENT IS RESERVED FOR SUBSCRIBERS ONLY.Subscribe now to access this story and more:Unlimited access to the website and appExclusive access to premium content, newsletters and podcastsFull access to the e-Edition app, an electronic replica of the print edition that you can share, download and comment onEnjoy insights and behind-the-scenes analysis from our award-winning journalistsSupport local journalists and the next generation of journalistsSUBSCRIBE TO UNLOCK MORE ARTICLES.Subscribe or sign in to your account to continue your reading experience.Unlimited access to the website and appExclusive access to premium content, newsletters and podcastsFull access to the e-Edition app, an electronic replica of the print edition that you can share, download and comment onEnjoy insights and behind-the-scenes analysis from our award-winning journalistsSupport local journalists and the next generation of journalistsRegister to unlock more articles.Create an account or sign in to continue your reading experience.Access additional stories every monthShare your thoughts and join the conversation in our commenting communityGet email updates from your favourite authorsSign In or Create an AccountorArticle contentTo protect the identity of the girl, The Telegram is not naming her or her family in this article.Article contentArticle contentThe girl has a history of self-harm, suicide attempts, and violent outbursts, placing immense strain on her family.Article contentArticle content“She wants to kill herself every day,” the mother said.Article contentHer daughter’s IQ has been assessed by professionals on more than one occasion and is consistently below 70, meaning her cognitive understanding is significantly below that of her peers.Article content“I just want her to feel good and happy and safe. Right now, that’s our goal,” says her mother.Article contentHer daughter has been in and out of group homes for nearly two years, and has been moved repeatedly because of her aggressive behaviour and putting others at risk.Article contentHer siblings have also suffered.Article content“They’ve seen her violence and aggression,” the mother said.Article content“When she was living with us, one of her siblings peed in their bed because they didn’t want to come out of their room. They were afraid of her.”Article contentDespite these challenges, the mother emphasizes that the family has always acted with care, love and dedication.Article contentArticle content“We knew our retirement would always involve caring for her. We never thought we’d have to fear for our own safety,” she said.Article contentArticle contentAt the breaking pointArticle contentBefore the group homes, the family tried intensive home engagement programs, with professionals visiting several times a week for over a year.Article content“They were here almost every day,” the mother said.Article content“But most of the time, she wouldn’t even come out of her room, and when she did, it often made things worse.”Article contentThese interventions, while well-intentioned, were largely ineffective and sometimes disrupted the household further.Article content“She’s so strong and violent,” the mother said.Article content“None of us can be safe with her alone right now. She has attacked everybody in our family.”Article contentThe mother described the severity of her daughter’s aggression, explaining that it went far beyond breaking small items like pictures, glasses, phones, or tablets.Article contentShe said her daughter had caused extensive damage to the home, including destroying multiple doors, kicking them down, and even throwing them over the stairs.Article contentYears of struggle for supportArticle contentSecuring appropriate psychiatric care has been a long and exhausting battle.Article contentThe family has sought help from multiple specialists and agencies, but systemic barriers have repeatedly blocked access.Article contentSpecialists reviewing her case noted that some of her behaviours were not typical for children with FASD, prompting several urgent referrals for comprehensive psychiatric assessment to determine whether additional underlying conditions were contributing to her escalating behaviour.Article contentWhen her daughter was eventually admitted for inpatient care, staff noted her aggression and the need for sedation.Article contentWithin that one admission, she was placed in a therapeutic quiet room on more than one occasion to ensure her safety and that of the staff.Article contentArticle contentDespite this, she was discharged without follow-up or outpatient care.Article contentLater referrals led to a brief outpatient appointment, during which no testing was done and a low-dose antidepressant was prescribed.Article content“It would do absolutely nothing for her severe aggression,” the mother said.Article contentMonths later, after further mental health crises, new medications were finally recommended.Article contentHowever, because of policy restrictions within her current care setting, those medications have not been administered yet.Article content“You shouldn’t have to beg for help,” she said.Article contentThe mother believes her daughter could be safely supported at home once the recommended medications can be administered — they take six to eight weeks to work — and the appropriate psychiatric treatment is in placeArticle content“We just want her calm, safe, and home with us,” she said.Article contentFalse hopeArticle contentIn 2024, the mother and her husband met with then-Health Minister John Hogan to discuss their daughter’s struggles.Article contentArticle content“He couldn’t believe it,” the mother said.Article content“He said, ‘Is all you’re looking for is some help in an assessment and a diagnosis for your child?’ I said, ‘Yeah, that’s all I’m looking for.’”Article contentShe added that Hogan acknowledged a child could have more than one diagnosis.Article content“I told him that I have said this a million times to anyone I have talked to. For example, you could have FASD and have bipolar and/or schizophrenia too. My daughter is totally paranoid about everybody and everything,” she said.Article contentThe meeting left the family hopeful, with even the minister reportedly having tears in his eyes.Article contentWhen the meeting ended, a staff member offered reassurance.Article content“They said, ‘He has children of his own. He will get you some help,’” she said.Article content“We left there for the first time with hope, like someone was finally going to help us.”Article contentTwo weeks later, the family received no follow-up.Article content“They eventually called and said, ‘Did you consider calling 811?’ It was like someone had punched me in the stomach,” the mother said.Article content“I said, ‘You’re joking, right?’”Article contentAccording to the mother, a staff member said to “leave it with them,” and she has not heard back in over a year.Article contentIn the months that followed, the mother reached out to the Human Rights Commission of Newfoundland and Labrador.Article contentShe said the commission initially corresponded with her by email, but later informed her that it could not intervene.Article content“They said it wasn’t their jurisdiction, and told me if I had a problem with Eastern Health, to file a complaint directly with them,” the mother said.Article contentShe said neither then-premier Andrew Furey or any MHAs followed up after their offices received her full account, describing the experience as “a vicious cycle over and over again.”Article contentArticle contentGrieving a life in crisisArticle contentFor the last two years, the emotional toll on the family has been profound.Article contentThe mother described her husband’s quiet struggles, saying, “Every morning, he goes into her room and sits on her bed and cries.”Article contentShe added, “I’m so wrapped up in my own grief, I didn’t even realize he was hurting this much, too. It’s heartbreaking.”Article contentThe couple has tried to find moments of normalcy, taking short trips and spending time together outdoors.Article content“Me and my husband feel dead, we’re just not the same. He said it feels like you’re mourning the death of your child.”Article content‘No one will listen’Article content“She just isn’t able to fully comprehend the consequences of her actions,” the mother said.Article content“One time, she was going to jump in front of a car. I said, ‘No, you can’t do it. You’re going to die.’ She doesn’t really understand that death is final.”Article contentThe mother believes these barriers are rooted in a lack of understanding and resources for children with FASD and complex mental health needs.Article contentArticle contentDespite multiple urgent referrals, she said her daughter was denied admission, even when there were empty beds.Article content“My husband, myself, and the entire team advocating for her saw the whole ward empty, but they still refused to take her,” the mother said.Article contentAccording to the mother, the doctor argued that admitting children could be harmful and make them feel institutionalized, and there was no plan for outpatient follow-up.Article content“It’s absolutely ridiculous that a child like this can’t get admitted when there are empty beds. Why would you not try something?” she said.Article contentShe is now pursuing the possibility of an out-of-province assessment, hoping another facility will be willing to provide the in-depth evaluation and treatment plan her daughter needs.Article content“We’ve contacted every resource imaginable. I’m just so sick of this,” she said.Article content“The child is crying out for help for years, and no one will listen.”Article contentAdvocating for changeArticle contentThe family is seeking more systemic support for children with complex mental health needs.Article content“It’s not acceptable that children like my daughter can’t get the care they need,” the mother said.Article contentShe also stresses the need for timely psychiatric intervention and tailored treatment.Article content“We just want medication and therapy to manage her aggression and self-harm so she can live safely,” she said.Article contentThe mother hopes sharing her experience will raise awareness and prevent similar situations for other families.Article content“Children are crying out for help, and nobody’s listening. That has to change,” she said.Article contentHope for the futureArticle content“Our ultimate goal is to have our family back,” the mother said.Article content“But right now, we’re focusing on stabilizing her and keeping her safe. When she’s ready, we hope she can come home and feel secure.”Article contentShe believes that even small steps toward care and safety are progress.Article contentArticle content“At least when she is out of her current care setting, she’ll have a medication plan. That’s a start,” she said.Article contentIn the meantime, the family continues to navigate an often fragmented system, advocating relentlessly for a child they love deeply.Article content“We’ll do whatever it takes to get her well, happy, and our family whole again,” she said.Article content“That’s all we want right now.”Article content Katharine Dunbar Winsor is the executive director of FASD NL. Photo by Julye Fortier photographe /ContributedArticle contentWhat is FASD?Article contentKatharine Dunbar Winsor, executive director of FASD NL, described fetal alcohol spectrum disorder as “a lifelong neurodevelopmental disability caused by prenatal alcohol exposure,” adding that “it can affect how an individual’s brain grows and functions.”Article contentShe explained it can impact memory, attention, communication, emotional regulation, and daily living.Article content“People with FASD deserve our understanding and our support, rather than judgment or stigma,” Winsor said.Article contentArticle contentShe emphasized that each person is affected differently.Article content“Not every person who’s exposed to alcohol during pregnancy will be affected in the same way. We need to think of FASD as a spectrum.”Article contentMisconceptions and stigmaArticle contentWinsor highlighted common misunderstandings about FASD.Article content“People often think it affects everyone the same way, that everyone would have the facial features, which are actually quite uncommon,” she said.Article content“Others believe people with FASD can’t learn or function in society, which isn’t true. There are also misconceptions about people who consume alcohol during pregnancy, often placing blame on the mother or pregnant person.”Article contentShe stressed that education is key.Article contentWinsor said most alcohol use during pregnancy is unintentional, often happening before a person even knows they are pregnant.Article content“Even social drinkers can consume alcohol without realizing the risk. There’s a lot of misinformation out there.”Article contentCo-occurring conditionsArticle contentWinsor said receiving an FASD diagnosis is only one step, and the challenges that follow can be just as significant.Article contentShe cautioned against assuming that FASD explains every difficulty a person experiences.Article content“When we encounter situations where people assume that all of an individual’s challenges are related to FASD and are not open to considering that there might be other conditions present, this is a really sort of problematic approach to FASD,” Winsor said.Article contentShe noted that while not everyone with FASD will have another diagnosis, co-occurring conditions, both physical and mental health-related, occur at a higher rate than in the general population.Article content“It’s a misconception sometimes that we can explain everything with an FASD diagnosis, and we just simply can’t,” she said.Article content“We have to take every individual’s unique scenario and symptoms and investigate that person’s experiences thoroughly.”Article contentArticle contentWinsor added that people with FASD are often misunderstood once they enter formal systems, such as health care, child welfare, or justice.Article content“We’re seeing people not receiving adequate care and support once they’re involved in these systems,” she said.Article content“Troublingly, it can give the impression that all people with FASD end up in those systems, and that’s also not true.”Article contentEveryday challengesArticle contentFASD can affect “almost every aspect of your daily living,” Winsor said.Article contentSome individuals struggle with memory, following instructions, managing time, transitioning between tasks, social cues, impulse control, friendships, money management, understanding risks, and organizing routines.Article content“Their challenges are not connected to lack of effort, but to the fact that their brain works differently. If we recognize their brain works differently, then we can support them differently,” she said.Article contentArticle contentShe noted that even biological siblings can present very differently, depending on timing and amount of alcohol exposure, genetics, nutrition, and environment.Article contentNewfoundland and Labrador has made progress in improving access to diagnosis and support through a new provincial FASD diagnostic network, she added, which is a group of about 80 trained clinicians across all regions who can assess and diagnose FASD more efficiently.Article contentFASD NL also offers free or low-cost training and downloadable resources for health-care providers, educators, and caregivers to promote evidence-based understanding across the province.Article content
She wants to kill herself every day: NL parents fight for psychiatric care as system fails their daughter
