National Collaborating Centre for Aboriginal Health: Voices from the Field

Welcome to “Voices from the Field”, a podcast produced by the National Collaborating Centre for Aboriginal Health (NCCAH), which focuses on innovative research and community-based initiatives promoting the health and well-being of First Nation, Inuit and Metis peoples in Canada.
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Bienvenue aux « Les voix du terrain », un balado produit par le Centre de la collaboration nationale de la santé autochtone (CCNSA) qui met l’accent sur la recherche innovante et les initiatives communautaires promouvant la santé et le bien-être des peuples des Premières Nations, des Inuits et des Métis au Canada.

Back to school tips with the Lakeland Centre for FASD

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With summer coming to an end and September just around the corner, it is time to start preparing our children for back to school.  Transition is always a difficult time and transitioning back to a school routine is no different.  The following are some tips to ease our children back into the school routines.

  1. Mark your calendar.  Have your child help you mark the first day of school on the calendar and count down the days with your child.
  2. Reminders.  Beginning about 2-3 weeks before, remind your child daily how many days remain until the start of school (you can have your child mark an X on the calendar each day to show the time passing).
  3. Re-establish bedtime and mealtime routine.  About 2 weeks prior to the start of school you can start the bedtime and mealtime routines that are often lost over the summer months.  Often kids are not willing to re-establish bedtime routine, especially when they can hear their peers playing outside; offer your child the option to play a quiet game or read a book before bed to help with the transition to bedtime.
  4. Meet the teacher.  It is a good idea to set up a time for you and your child to meet with his or her new teacher and to see the new classroom.  If your child has a new Aid, it is important the aid is also available to meet.  Meeting with the teacher helps relieve anxiety for your child about the first day of school, who will their teacher be and where the classroom is. This also gives the parent the opportunity to open the door to further conversations with the teacher about the child and the strategies that have been successful in the past.
  5. School bus.  If possible plan ahead to speak with the school bus driver about where your child will sit on the bus and who an appropriate bus buddy will be.  Remind your child about school bus rules.

For more great information on FASD please visit Lakeland’s:

Prenatal exposure to alcohol can happen to any of us. FASD doesn’t discriminate, and sometimes diagnosis can stem from an innocent evening out at a work gathering, prior to the knowledge of being pregnant. We’ve compiled this knowledge centre so that you can join in the movement to help spread the word and prevent FASD.

CanFASD: Sober Saturdayz

Sober Saturdayz

CBC news recently covered the story of an Edmonton woman who is finding creative ways to promote healthy living and alcohol-free social opportunities.

Kaitie Degen is familiar with the negative effects of alcohol use, having grown up in a family impacted by substance use issues. After taking steps towards reducing drinking in her own life, she founded Sober Saturdayz, which is an organization that hosts alcohol-free parties across the city to make it easier for people to have fun “without the hangover.”

Although Sober Saturdayz is not directly tied to FASD, the initiative sends an incredibly valuable message: People can enjoy themselves and stay socially connected without feeling pressured to drink.

This message is especially important to hear in a culture where rates of binge drinking are on the rise, and more than half of pregnancies are unplanned. In the world of FASD, Sober Saturdayz represents a real-life example of how we can work towards preventing alcohol-exposed pregnancies and supporting healthy life choices.

Young women become pregnant for a multitude of reasons, some of which are unexpected and some without support or education. The effects of alcohol consumption during pregnancy can last a lifetime and FASD affects more than just the child, family, and community. The mental and physical problems that may come with FASD are just some of the layers of how deeply rooted a family can be affected. I can only hope that Sober Saturdayz can reach out to young women, show support, build community, and set them up for success to be the mothers I know they want to be.

Kaitie Degen

The first Sober Saturdayz event, Daytime Disco, will be happening in Edmonton on August 25 at El Cortez. For more information and to buy tickets, visit the event page here.

You can also connect with Sober Saturdayz over Facebook and email Kaitie at sobersaturdayz@gmail.com.

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HAVE YOU READ: A HANDBOOK FOR BEAUTIFUL PEOPLE

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When twenty-two-year-old Marla finds herself unexpectedly pregnant, she wishes for a family, but faces precariousness: an uncertain future with her talented, exacting boyfriend, Liam; constant danger from her roommate, Dani, a sometime prostitute and entrenched drug addict; and the unannounced but overwhelming needs of her younger brother, Gavin, whom she has brought home for the first time from deaf school. Forcing her hand is Marla’s fetal alcohol syndrome, which sets her apart but also carries her through.

When Marla loses her job and breaks her arm in a car accident, Liam asks her to marry him. It’s what she’s been waiting for: a chance to leave Dani, but Dani doesn’t take no for an answer. Marla stays strong when her mother shows up drunk, creates her own terms when Dani publicly shames her, and then falls apart when Gavin attempts suicide. It rains, and then pours, and when the Bow River finally overflows, flooding Marla’s entire neighbourhood, she is ready to admit that she wants more for her child than she can possibly give right now. Marla’s courage to ask for help and keep her mind open transforms everyone around her, cementing her relationships and proving to those who had doubted her that having a fetal alcohol spectrum disorder does not make a person any less noble, wise or caring.

About the author:

Jennifer Spruit grew up in Lloydminster, AB/SK, alongside pump jacks, farm machinery, and its endless, sparkling winter sky. Her affair with writing began with a Grade One story about a tractor, but she has since become engaged in writing about people. She studied Creative Writing at UBC and now lives in Courtenay, on Vancouver Island, where she enjoys playing folk and bluegrass, teaching kids, and rowing a blue canoe. Her work has appeared in Arc, The Antigonish Review, Prairie Fire Magazine, and SubTerrain Magazine, among others. A Handbook for Beautiful People is her debut novel. She is currently at work on a second novel.

Reviews:

“…there is a lot going on in A Handbook for Beautiful People, much of it very good. Spruit’s chapter titles (“Ravioli” “Eggplant” “Honeydew”) allude to the growing fetus in a creative way. Marla’s fetal alcohol syndrome manifests itself in myriad behaviours and decisions, something the condition is said to do. It makes her both unpredictable and believable, a good combination. Spruit’s use of point-of-view, which shifts fluidly between different characters, is impressive and regularly means we’ll see scenes unfold in different ways for different people, as we do at a Christmas dinner that takes place in a Chinese restaurant. The novel’s techniques are consistently intriguing.”

“Wonderful, heartfelt, heartbreaking–I can’t recommend this novel highly enough.”
–Annabel Lyon, author of The Sweet Girl

Click here for purchase and ordering information

Sandra Butcher: Shifting Sands And Special Needs Parenting

 

Once upon a time a little boy used to struggle mightily when going on family holidays. He would become so bewildered by the many changes his brain could not process that he would rail against the world, against us. Strong and fierce in his moments of distress, a sadness shadowed us at these times when we were supposed to be most happy. It was heart-wrenching. Deflating. Scary. Lonely. But this year, something magical happened. Sometime between then and now, our little guy passed some unknown threshold. He powered up to the next level, became better armed and was more ready for the challenges.

Yes. We had two whole weeks of a lovely and soul-refreshing holiday at the seaside. It was spectacular. Glorious. An experience I won’t ever forget.

There was a sign at the top of the steep hill we had to walk down to get to the water. “Apologies, beach steps are temporarily closed due to shifting sands. Please use the alternative beach access.” This in a nutshell explained how we got here.

Our son has a Foetal Alcohol Spectrum Disorder (FASD). His brain wiring was affected by prenatal exposure to alcohol. Like many with his condition, he finds it really hard to control his impulses when he’s under stress, when he processes new information and when his senses are overloaded with unusual sights, smells, textures. In other words, going away on holiday is the perfect storm for a person facing the cognitive challenges of FASD. Holidays are not vacations, as someone once told me.

Some might think the reasons why our holiday went well this year were just because he’s older now and because we went back to a familiar place. Yes, these things helped immensely. But thinking that was the secret to success would be ignoring the two years of hard work he has done since our last holiday to better understand himself and his needs. It would be ignoring the way we took on board advice and structured this holiday to maximise our chance of a positive outcome.

The game-changer is there are teams of experts helping him, helping us – at the specialist school he now attends, in counselling services for those with intellectual disabilities and with the help of experts who work with him on issues related to gender nonconformity – all of which is coordinated under the guidance of a paediatrician who understands how his FASD and co-occurring conditions all inter-relate. He was diagnosed at 10 and in the time since we as a family have learned alternative strategies via our interactions with experts and others with lived experiences via online and in-person support groups. We have tossed traditional parenting out the window and have tried to create an environment where our little one can relax enough to begin to grow. It has taken years and years to get here.

While each day of our holiday had its challenges and while we have a long way to go, the point is – we did it. We listened. We worked hard. We adapted. And yes, we did it!

I can’t tell you how I want to sing that from the rooftops, now, before we settle back into our less-than-perfect existence. I wish I could send that message back to myself a few years ago, for those days when I thought it would never change. When I looked into the future and all I could see was doubt and fear as to what the tomorrows might hold for our little one.

I want to send out a message to others who might be feeling depressed, like I was then. I want to say, “Hang on. Rattle the system. Make the professionals see your child. It’s not easy but it’s possible. If we could do this, so can you. Stay strong. Stay positive. Feed the future with your positivity and belief it can come true. Find a network. Build your support system. Dig deep. Celebrate the successes. They will come.”

Click here to read the full article by Sandra Butcher.

Please visit Sandra’s personal blog FASD Learning With Hope.

Lakeland centre trying to fight the ‘invisible disability’

The Lakeland Centre for FASD offers outreach programs for those diagnosed with FASD and their families. SUBMITTED

It’s called the ‘invisible disability’ owing to its lack of any distinct physical features, and it’s back in the spotlight again after the unfortunate overdose death of a patient at the Edmonton Remand Centre last month.

The death of Maxim Baril-Blouin, diagnosed with fetal alcohol spectrum disorder (FASD) at an early age, has raised the issue of how to deal with the illness, a point highlighted by his mother, who was advocating better support for her son at the time of his death.

Almost 500 babies a year a born with this disorder in Alberta, and in total close to 46,000 Albertans fall on some end of the spectrum.

The Lakeland Centre for FASD is thus a boon for those in the region who suffer from this disorder.

Describing the illness, the program manager at the Centre, Lisa Murphy, told The Cold Lake Sun, “FASD is a complex disorder. It affects people differently and many factors play a role in outcomes. FASD is known as the ‘invisible disability’ because unlike many other disorders, few people have any distinct physical features; the challenges are brain based.”

“Many people with FASD struggle with executive functioning, memory, language, and learning. Any woman of child barring age who drinks alcohol, is at risk of having a child with FASD. But the focus should not be on moms, rather how we, as a community support and empower the entire family,” she said.

Murphy added that due to its complexities, it is essential FASD is diagnosed by a multidisciplinary team approach, consisting of a physician, psychologist, occupational therapist, speech language pathologist, and community support.

Patients at the Lakeland Centre for FASD are encouraged to develop personal strength and help fight the debilitating effects of this disorder such as struggles with executive functioning, memory, language and learning.SUBMITTED

“Individuals with FASD require lifelong support, people who understand their individual needs, and a chance to develop their personal strengths. Without supports individuals with FASD can find themselves in many undesirable situations including criminal activity.  And the supports people need are not always available,” she said.

The tragic death of Baril-Blouin, a 26-year-old from Whitehorse, highlighted the lifelong support patients need. He died of an apparent fentanyl overdose at the remand centre. Sylvie Salomon, who adopted Baril-Blouin when he was young, told CBC that he shouldn’t have been in jail in the first place with no one to watch over him. In 2010, then Canadian Bar Association president Rod Snow had asked lawmakers to deal with leniency when those disabled by FASD faced charges.

Giving a peek into their work at the Centre, Murphy said, “The Lakeland Centre for FASD provides lifelong support from prevention to diagnosis to intervention services, across the Lakeland Region. Our outreach programs include post diagnostic supports for individuals diagnosed with FASD and their families, transition to adult services support, and employment support. We run a summer camp for children with FASD, and recently added counselling services to our list of available programs.”

The Centre doesn’t just help the affected, rather it also tries to bring down future victims. “LCFASD also works in prevention; our Mother’s-To-Be mentorship program is an intensive outpatient program supporting high risk women for three years following the birth of their child. The 2nd Floor Women’s Recovery is a 9-bed women’s residential treatment centre, specializing in women who are pregnant or are in child baring years and at high risk of using during pregnancy. The women in our prevention programs do not need to have a diagnosis of FASD,” said Murphy.

Giving an insight into the effectiveness of the program, she added. “It’s important to focus on the little successes.  Our aim is to build support around each of our clients and encourage our community to change traditional support methods.  LCFASD works with over 400 individuals with FASD and their families each year in the region.   Many individuals with FASD with proper support finish high school, maintain employment and have families.  Without an early diagnosis, proper support in school and into adulthood, can result in very challenging situations.”

Talking about the challenges the Centre faces, she said, “About 80 percent of our funding comes from various government departments, the remainder is from fees and donations. Our funding from government has not provided us with an increase in over 6 years.  This has made it very difficult to maintain high levels of service. Every FASD Network in the province is working under the same conditions with no additional funding and growing waitlists.”

Despite the challenges and grim realities, Murphy is optimistic about the future. “Although FASD is still a fairly new term, the dangers of mixing alcohol and pregnancy is not.  Approximately 4% of the population in Canada have FASD, many of whom will not be diagnosed because the diagnostic clinics just cannot keep up with the need.  The highest risk groups include working women, college and university women and women with addictions. Having said that, Alberta is leading the FASD world with its programming.  Which is why we try not to complain too much as we have many more services for individuals with FASD than most other places in Canada.”

Written by Rohit Bhaskar

Retrieved from https://www.saultstar.com/news/local-news/lakeland-centre-trying-to-fight-the-invisible-disability/wcm/fe1a76fb-ee4e-4c51-9122-9a5d5e75dc52

CanFASD FASD Day Interview #3: Dr. Sarah Treit

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Colour_SarahDr. Sarah Treit is currently appointed in the Department of Biomedical Engineering in the Faculty of Medicine and Dentistry at the University of Alberta. Dr. Treit is making important strides with her research to better understand FASD.

Her study on Magnetic Resonance Imaging (MRI) of brain development of children with FASD revealed delayed development of white matter (brain ‘wiring’) and cortical grey matter maturation. This delayed development can contribute to explaining why behaviour in adolescents often worsens as they grow up.

In a separate study of children, adolescents, and adults with FASD, she found greater reductions in brain volume among males than females with FASD, despite similar impairments in cognition – suggesting that prenatal alcohol exposure may affect brain structure differently in males compared to females. Dr. Treit was one of the recipients of the 2017 Sterling Clarren Research Award.

Can you speak briefly on your main area(s) of research?

My research uses magnetic resonance imaging (MRI) to examine brain structure in children, adolescents, and adults with FASD. The main goals of my research are to determine: i) how brain structure differs in this population; ii) if there are differences in the way the brain develops with age in children who were prenatally exposed to alcohol; and iii) if boys and girls are affected differently.

What sparked your interest in FASD research?

During my undergraduate degree in Psychology I began working with children with Autism, which really sparked my interest in developmental disabilities and childhood mental health. Going into graduate school, I wanted to combine this with an interest in brain imaging to understand how brain structure and behaviour come together. From a scientific perspective, I think FASD presents a particularly interesting case because unlike many other developmental disorders, we actually know the cause— we can even model it with some degree of precision in animal models, yet we see a huge diversity of outcomes. This huge variability stems not just from differences in timing, dose, and other exposure factors, but from the interaction all of these factors have with other environmental and genetic variables. Understanding how this all adds up to produce differences in brain structure and thus behaviour is critical to our understanding of not just FASD, but brain development in general.

Have you seen your research translated into action in your province? If so, how? How do you hope your research will impact those affected by FASD?

My research falls into the category of basic science/discovery research that takes many years to become something that can be put into action for people with FASD in Alberta. That said, this type of research should be thought of as the building blocks for discoveries that will down the road directly impact people. The more we understand about how brain development is affected by prenatal alcohol exposure, the more we can do to help those who have been affected. A better understanding of deviations in brain structure and function will help tailor everything from drug development to behavioural intervention, as well as provide a better scientific understanding of how FASD is structurally similar (or dissimilar) to other developmental disabilities. In addition, this work provides concrete objective evidence of structural brain anomalies in children with prenatal alcohol exposure.

What has been your most significant research finding?

I would say that my most significant findings came out of my longitudinal MRI study, in which I scanned the same group of kids with FASD several years apart (Treit et al 2013 J Neuro; Treit et al 2014 HBM). This work demonstrated two key concepts: that brain development continues to unfold at a different rate in children with FASD relative to healthy controls many years after the initial in-utero exposure, but importantly also that brain development is nonetheless occurring. This is an important reminder that the brain has a great capacity for plasticity and change, and provides hope for the possibility for “catching up” of delays in early childhood.

Find out more about Dr.Treit’s research here.

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