Our New Year’s Resolution: Addressing Stigma

Dr. Theresa Tam, the Chief Public Health Officer of Canada, has just released a report summarizing the state of public healthcare in Canada. The 2019 report lists stigma as the major public health concern impacting the health and wellbeing of all Canadians.

Stigma is a negative stereotype or a “labelling of differences” that begins to separate people into categories of “us” and “them”. Stigma acts as a barrier, influencing an individual’s willingness to seek help, their access to services, and the quality of care that they receive. As we move into a new decade we’re very pleased to see that Canada is placing a strong focus on addressing stigma at an individual level, an institutional level, a community level, and at a national level.

In our field, we know only too well the impact that stigma can have on the health of Canadians. Individuals with Fetal Alcohol Spectrum Disorder (FASD) and their caregivers experience stigma on a daily basis. Despite the fact that FASD affects approximately 4% of Canadians (more than cerebral palsy, autism, and Down syndrome combined), the disorder is not well understood by the majority of our population. As a result, the challenges individuals with FASD face with emotional regulation and social interaction are often seen as “bad behaviour” and “poor life choices” by our society. This stigma impacts every aspect of their lives, from employment and education to involvement with the justice system and everything in between. Additionally, mental health issues and substance use disorders frequently co-occur with FASD. As a result, individuals with FASD face stigma in a number of different forms.

We’ve developed online training courses for community members and frontline workers to help them better understand FASD and give them tools to improve service provision for individuals with FASD. This is just one of the ways we are working to overcome stigma at an individual, institution, community, and national level. (Read more…)

The 10 Commandments of Working with Youth Impacted by Fetal Alcohol Spectrum Disorders

According to the Center for Disease Control, Fetal Alcohol Spectrum Disorders (FASD) impact between 2 to 5 percent of the general population in the United States. When working with children who have come from homes where parents abuse alcohol and other drugs, the prevalence rates are going to be significantly higher.

This issue is being taken seriously by two senators who are proposing funding to help study the impacts of FASD. Presidential hopeful Sen. Amy Klobuchar (D-Minn.) and Sen. Lisa Murkowski (R-Alaska) introduced the Advancing FASD Research, Prevention and Services Act that would amend the Public Health Service Act to include $42 million for research and services grants focused on Fetal Alcohol Spectrum Disorder (FASD).

In the meantime, many professionals working in the field of child protection and foster care receive minimal training on how to identify individuals impacted and even less training on how to support individuals who are impacted.

Here are a few tips for foster parents and others working with children who might be impacted by FASD.

1. Always screen for prenatal alcohol exposure. At any point in the pregnancy, alcohol can impact developing cells. Alcohol is a teratogen, meaning that it alters and/or kills developing cells. Many providers do not do an adequate job of screening for alcohol because they simply ask the mother, “did you drink alcohol during your pregnancy?” A mother may answer “no” for a variety of reasons when in fact there was prenatal alcohol exposure. As foster parents, as you have the opportunity to get to know the parents and build rapport with them, you can ask the following questions to get to the truth of whether there was prenatal alcohol exposure. Asking the mother and father regarding their lives during the year they were pregnant will provide a fuller picture of what substance use was occurring around the time of conception and during the pregnancy. (Read more…)

As demand explodes, Manitoba’s new FASD court expands to meet need

Sentencing court for offenders with fetal alcohol spectrum adds new slots for adults, flexibility for youth

Manitoba’s court designed to help offenders with fetal alcohol spectrum disorder (FASD) is tripling the number of hearings for adults to deal with skyrocketing demand for the unique hearings they began offering less than a year ago.

“The demand is very, very high,” said Judge Mary Kate Harvie, who’s in the FASD court and is chair of the committee that spearheaded its creation.

The court handles sentencing for offenders with FASD — a disorder affecting the brain and body caused by the fetus’s exposure to alcohol — on a range of cases from breaches to more serious matters.

“I think, generally speaking, the cases we’re seeing are some of the most challenging that are within our system,” said Harvie.

The court, the first of its kind in Canada when it launched in March, helps offenders with FASD navigate the court system and connects them with specialized help as part of their sentences.

By late October, a Manitoba Justice spokesperson said adults faced a two-month wait time before getting a date — a delay Harvie and other legal experts attributed to high demand and limited sittings.

“At first, it was a little slow, and then, whoosh, it picked up speed,” the judge said. “I think it’s confirmed the suspicions that we had that we needed something specific to address this population, that the numbers are significant and that we need to do better for this population, right across the board.”

FASD’s effects vary from mild to severe. While a minority of people have physical signs — like a smooth ridge between the nose and upper lip — some also have cognitive effects, which can include poor memory or learning disabilities.

When the court launched, it heard youth proceedings every Thursday morning at the Manitoba Youth Centre, with alternating adult and youth proceedings at the Manitoba Law Courts on Thursday afternoons. (Read more…)

(in French) Trouble du spectre de l’alcoolisation fœtale : les efforts récompensés

Partie prenante du Centre d’excellence en trouble du spectre de l’alcoolisation fœtale (TSAF), le programme Capteur de rêves se distingue des autres services publics lorsqu’il est question de traiter avec les Premières Nations. L’esprit novateur de Capteur de rêve a d’ailleurs fait remporter au Centre d’excellence TSAF le premier Prix de l’innovation Claudette Bradshaw.

L’équipe du Centre d’excellence TSAF du Réseau de santé Vitalité était envahie d’un sentiment de fierté et de travail accompli dans la salle de réception de l’Hôtel Four Points by Sheraton de Moncton, jeudi.

Après avoir travaillé d’arrache-pied pour développer le programme Capteur de rêves, le Centre d’excellence TSAF a reçu le prix de l’innovation Claudette Bradshaw. C’est Mme Bradshaw en personne, ancienne députée fédérale qui a consacré sa vie à défendre les plus démunis, qui a couronné l’organisme.

Noel Milliea, aîné de la Première Nation d’Elsipogtog, a prononcé un discours poignant sur la nécessité de Capteur de rêves dans les communautés autochtones.

Les autochtones sont méfiants de la société canadienne, annonce-t-il d’emblée aux personnes présentes.

«Notre communauté en est venue au point de ne plus être capable de faire confiance à cause des nombreuses trahisons survenues dans le passé.»

M. Milliea fait référence aux cicatrices laissées par l’assimilation et la colonisation.

En revanche, les Premières Nations ont appris à faire confiance aux intervenants du Centre d’excellence TSAF, car le programme avait été adapté pour eux. Une denrée rare quant aux services
publics traditionnels.

«Normalement, la société dominante impose n’importe quel programme qu’elle pense pouvoir faire marcher sur nous», accuse-t-il.

Le modèle de prestation de services Capteur de rêves a été conçu avec les recommandations des communautés autochtones. Le programme es malléable selon les ressources et les besoins des clients atteints du spectre de l’alcoolisation fœtal.

Lorsque le Centre d’excellence TSAF a voulu intégrer la perspective autochtone au sein du programme, la Dre Nicole LeBlanc, médecin-conseil au Centre d’excellence TSAF et d’autres membres de l’équipe ont fait appel à l’aide de M. Milliea. (Lire plus…)

CanFASD Art Competition Winners Announced

The CanFASD Art Competition is open to Canadian artists with FASD. Applicants must submit a photo of an original piece of art, but the medium is up them. We received photos of statues, drawings, paintings, and costumes for submission. Although the winner will be featured on our holiday card, their art doesn’t have to be holiday themed. Our applicants are inspired by anything from holiday traditions to beach sunsets, and everything in between.

We’ve been holding the competition since 2016 but this has been the most popular year yet. We’ve received really unique submissions from artists of all ages, all over the country. It was really difficult for us to choose just one winner because there were so many artists we wanted to showcase. So this year, for the first time, we’re introducing second and third place titles along with our first place winner.

Our third place winner is Anna Dobson for her piece entitled“fairy view of a sunflower”. Anna created this piece at 8 years old. She is now twelve and her creativity has not diminished. In addition to being a budding artist, Anna is also a musician. She plays the piano and is trying to learn how to play the guitar, saxophone, violin, and the pan flute.

In second place is Josiah Herbert who lives near Edberg, Alberta. Josiah’s submission was inspired by winter and the upcoming Christmas season. Josiah is 13 years old and has FASD. He draws and paints to stay calm. Along with his artistry, Josiah also has a number of other hobbies: “I also love trampoline, skateboard, biking, climbing trees and when Mom lets me, playing video games, making slime and baking cakes.”

Our winning submission was from Candace Bighead, an Indigenous artist with FASD. Her piece was inspired by her traditional name, Apisci Iyapiw Sohkitehewin, which means small deer with courage. (Read more…)

Better understanding of fetal alcohol disorders needed, says public speaker

A better understanding of fetal alcohol spectrum disorder will help not only those affected by it but also the communities struggling with it more widely, says Myles Himmelreich, who has FASD.

Himmelreich a public speaker who has been to communities disproportionately affected by FASD, including in Labrador, told CBC Radio’s On The Go that misconceptions about the disorder can hurt the self-worth of people living with it, leading to wider problems in a community.

“You don’t feel like you have that sense of purpose because you’re being told that you’re not like everybody else, and you can’t do things like everybody else,” said Himmelreich, who lives in Surrey, B.C.

When Himmelreich was adopted at age three, his parents were told he had fetal alcohol effects. At the time, medical professionals distinguished between fetal alcohol effects and fetal alcohol syndrome by the presence or lack of facial features associated with alcohol intake in pregnancy.

However, this distinction led many to miss the fact that even those affected by alcohol consumption in pregnancy who did not have the facial features associated with fetal alcohol syndrome still struggled and needed supports, Himmelreich said.

“They now call it ‘fetal alcohol spectrum disorder’ because they understand everybody’s affected differently,” he said.

Struggles in school and with friends
For Himmelreich, challenges showed up academically and socially. At school, he had difficulty completing his work.

“Being able to process the information in the same amount of time as everybody else was very difficult for me,” he said. “And then being able to retain the information and deliver it later on was also difficult for me.”

His difficulties were often mistaken as laziness or an unwillingness to listen or work, and Himmelreich said he took on those labels he heard from others and applied them to himself. (Read more…)

What Happens When No One Cares For The Caregiver

I’m tired. No I’m more than tired. I’m exhausted. I’m depleted. No amount of self care (bubble baths, walks, therapy, lunch with friends, reading a book, etc.) is going to “fill my cup” and bring me back to where I need to be.

I’m not alone. Many people are. Those who are caring for individuals with disabilities or aging parents are in the same place I find myself in. No one situation is the same. And no one situation is worse than another. But the fact that we are even in this place is a result of years of policies by governments that have attacked the most vulnerable in our society. And as a result those who look after them are now suffering.

December 3 was International Day of Persons with Disabilities. I watched politicians post message after message about their commitment to improve the lives of individuals with disabilities. From where I’m sitting, the only commitment I see is to continue to attack the social systems that “support” (and it isn’t even close to being enough anyway) people with disabilities and the people that care or support them. Yes, some people with disabilities are leading productive lives and have successful and full lives. Many after years of struggle. Some caregivers are managing. But not all. And I see far more struggling than succeeding.

Caregivers are worn out and exhausted. Now I’m only speaking here about my experience as a caregiver and from my perspective. But so many people are at the point of utter and complete despair and exhaustion because there is little help.

Years of advocating for services and supports has worn many down. And advocating is the nice word. What caregivers do is “fight.”  It is not the occasional advocating or “fight”, it is constant, day in and day out, year after year, pleas to get services and supports. We are labeled as the “crazy” parent. (Read more…)

From zero tolerance to open dialogue: How harm reduction is shifting the conversation on drug use

Enid Grant got the kind of phone call many parents dread. Her teenage son was “freaking out” after trying psychedelic mushrooms with friends.

She was scared for her son’s safety, but relieved he reached out to her for help.

“I couldn’t prevent that from happening, but I could be there when it happened,” said Grant, senior director of children’s mental health at Skylark, a Toronto-based charity.

“I could make sure that we talked about it afterwards.”

Grant’s kids have since grown up to be “wonderful, caring adults.” She credits harm reduction strategies — making it easier for them to talk about oft-taboo topics — with getting through the challenging years of their adolescence.

Harm reduction focuses not on abstinence, but minimizing harm and potential danger. The number of such initiatives in Canada has grown in recent years, including some high-profile safe injection sites in B.C. to help curb the deadly opioid crisis in that province.

But it hasn’t come without pushback.

“We have been, you know, living in a society where abstinence or zero-tolerance policies have been the ones that have, I think, politically felt the most comfortable,” said Sally Jenkins, an assistant professor at the University of British Columbia School of Nursing.

“And so we don’t have a lot of information for parents about how to do this differently.”

A recent study led by Jenkins interviewing 83 teens in B.C., found that many responded more positively to harm reduction approaches than a don’t-do-drugs edict.

Abstinence-based approaches didn’t reflect the lived experiences of many youth, who either have already tried drugs, or encountered it among their peers or even their own family circles, she explained.

In one community they surveyed, she added, many teens told her the zero-tolerance rule was “assumed” without a discussion of any sort.

“Kids just knew it wasn’t accepted. End of story,” she said. (Read more…)

Developmental assessment at 9 months of age can predict fetal alcohol syndrome

1. In this prospective cohort study, infants underwent developmental and dysmorphologic assessments at various times throughout early life. Researchers found that starting at 9 months of age, the total dysmorphology score was able to discriminate between children with and without a diagnosis of fetal alcohol spectrum disorders (FASD) at age 5.

2. Significant differences in developmental scores emerged between children with and without FASD between 18 and 42 months of age.

Evidence Rating Level: 2 (Good)

Study Rundown: Fetal alcohol spectrum disorders are the most common environmentally-induced category of intellectual disability in the world, and early identification and referral of at-risk children is crucial. Nonetheless, diagnosis of FASD is typically deferred until children are school-aged due to the challenges of evaluating phenotypes earlier in life. In this prospective cohort study, researchers used repeated longitudinal developmental and dysmorphology assessments of infants after birth at 6 weeks and 9, 18, 42, and 60 months of age and maternal interviews in order to identify infant features that predict a diagnosis of FASD at age 5. Starting at 9 months of age, the total dysmorphology score was able to discriminate between children with and without a diagnosis of FASD at age 5 to a significant degree. Several developmental differences became significant between 18 and 42 months of age.

The assessments were completed by expert dysmorphologists, of whom there are few, limiting the generalizability of the findings to resource-poor areas. Nonetheless, the study is strengthened by its prospective design and inclusion of both and unexposed children from the same community. For physicians, these findings highlight a promising tool to identify and aid in referring FASD at-risk infant at earlier ages than is currently possible.

Click to read the study, published today in Pediatrics

In-Depth [prospective cohort]: Researchers recruited pregnant women from primary health care clinics and hospitals in two communities in South Africa with a high prevalence of FASD. (Read more…)

Teachers, It’s Not His Attitude, It’s His FASD

“I don’t want to say it’s his attitude but….”

Here we were. Parents’ evening, Year 11. We’ve come so far in the many years of school. We’ve gone from parenting a young child whose needs we did not understand at the time, fighting back against those nursery teachers who thought he didn’t know any words and that first educational psychologist who told us he was ‘incapable of learning.’ We’ve made it through the initial diagnoses of ADHD (where the retiring teacher told us he was the first child she’d ever had with ADHD in her 30 years of teaching) and past the autism diagnosis that turned out to be incorrect (where one of the country’s leading children’s hospitals somehow missed the fact he has 100% of the facial features identified with Foetal Alcohol Syndrome). We finally got the FASD diagnosis that then took a while to sink in and to comprehend. After that, we started the phase of arriving at teachers’ meetings loaded with binders of information having highlighted relevant bits of his cognitive profile for anyone educating him (a task made harder once he hit secondary school with the multiple teachers and more fragmented home/school communication). There were superstars in his story but for the most part most teachers didn’t get it. Then we had the very welcome switch to a specialist school three years ago, with a whole new playing field that has changed so much for the better.

And yet, even here, at the last parents’ evening of his school experience before he heads to an inclusive learning programme at a sixth form college, here we were sitting across from a young teacher who simply was not listening, who had us pegged as parents who were making excuses for a teen who “knows what he needs to do” to get changed and ready for PE. She rattled on, convinced of her belief that he “just needs to join in and he’ll be fine.” (Read more…)