A wonderful photo voice project that produced this video sharing a personal story and experience of life as a parent of children with FASD has been translated Oji Cree Translation. Photo voice is a process that gives a voice to people who may not often felt heard. It is a research technique based on the idea that when it comes to understanding community issues, the local poeple- not outside professionals-are the experts.

This Photo voice project was based in Sioux Lookout, Ontario, Canada bringing together a range of women whose children have FASD-adoptive mothers, foster mothers, and birth mothers.

Do You Want to Help Prevent FASD?  Don’t Know Where to Start?

FASD ONE is excited to offer you a package to help you start conversations about alcohol and birth control use with all women and men of childbearing age.

This evidence-based resource will help you to begin conversations with women and men of childbearing age regarding alcohol and birth control use.  The resources can be used with both men and women to proactively prevent FASD before a pregnancy occurs. Starting conversations about alcohol and birth control use is a unique opportunity to help reduce stigma and prevent FASD.

This project, also known as the Condom Project, was developed for the Community Action Programs for Children and the Canadian Prenatal Nutrition Programs in Ontario.  It contains, posters, condoms and tear off sheets to give to women and men regarding the need to be on reliable birth control if any alcohol is being consumed.

Before using the resources we encourage you to review the webinar at the following link:  Webinar – Preventing FASD, The Condom Project. 

We welcome anyone to use these resources as long as FASD ONE is acknowledged. See the posters and tear offs below.  If you would like more information about them please contact us by email.

FASD ONE is grateful to the Public Health Agency of Canada who provided funding for this project.  However, the views expressed herein do not necessarily represent the views of the Public Health Agency.

Research Project by Maude Champagne, As part of her Masters Thesis Under the supervision of Geneviève Pagé, PhD Université du Québec en Outaouais

We want to hear from you as we are trying to understand Dyadic Developmental Psychotherapy from the point of view of parents with a child affected by developmental trauma and Fetal alcohol Spectrum Disorder.

Who can participate ?
* You are the parent of a child with FASD and Developmental Trauma.
* Your child is between 5 and 15 years old.
* You have attended at least 6 sessions of Dyadic Developmental Psychotherapy in the past two years.

What is involved ?
* We will have a phone conversation to make sure you can consent to the study and meet the eligibility criteria.

* If you consent to the study, we will do a recorded interview (audio only) of about 60-90 minutes to discuss your experience.
* Your confidentiality will be respected during the whole process .

To sign up or ask questions?
Please contact Maude Champagne, RSW (819) 335-0602 maudec910@gmail.com <mailto:maudec910@gmail.com>

Alcohol Use, Women’s Health and Pregnancy: Comprehensive Approaches to Preventing Problems Associated with Prenatal Alcohol Exposure
General purpose:
The purpose of this self-learning course is to provide up-to-date training and information to health care providers to address alcohol use by women of reproductive age and pregnant women, by introducing strategies for health promotion, early detection and motivation for change in this specific population group.

Guidelines
One of the most important and updated reference materials for this self-learning course is the World Health Organization (WHO) guide “Guidelines for the identification and management of substance use and substance use in pregnancy”. Published in 2014, these guidelines were developed by an extensive working group involving experts from various institutions and countries, who conducted systematic literature reviews to identify the most relevant evidence currently available on the subject. Click on the following link to download the document: http://www.who.int/substance_abuse/publications/pregnancy_guidelines

Summary

The online course “Alcohol Use, Women’s Health and Pregnancy: Comprehensive Approaches to Preventing Problems Associated with Prenatal Alcohol Exposure”, is an initiative of the Pan American Health Organization. In 7 modules and final evaluation, this free self-learning tool primarily aims to capacitate health professionals in addressing issues related to alcohol use by women of reproductive age and pregnant women by touching on strategies for early detection, motivation for change and health promotion in this target group. The theme areas covered in the course include:

1. Background on alcohol use and women’s health
2. Background on alcohol use and health of the pregnant woman
3. Implications of alcohol use in gestation for the fetus and child
4. Problems of alcohol as related to family relationships
5. Identification of alcohol use during pregnancy
6. Brief interventions and treatment
7. Implementation and health promotion

Online course

The online course is now available in Spanish and should take around eight hours to complete.

It has been designed for health professionals, including nurses, psychologists, doctors, and community health workers, as well as others who work in primary health care, maternal health and mental health.

The course consists of seven modules: alcohol use and women’s health; alcohol consumption and pregnant women’s health; the impact of alcohol consumption in pregnancy on the fetus and the newborn; family relationships; identifying alcohol use during pregnancy; short interventions and treatment; and health implementation and promotion.

For more information and to sign-up, visit this link

KITCHENER — A new support group for caregivers coping with fetal alcohol spectrum disorder will begin meeting this month, covering a range of topics related to the lifelong disability.

While parents and caregivers will have an opportunity to vent, the focus of the  monthly meetings hosted by Lutherwood will be on problem solving.

“We really want to talk about how we can improve things,” said Rob MacDonald, resource co-ordinator at Lutherwood. “I want people to leave feeling a little bit better.”

MacDonald and caregivers will lead the group, which starts Sept. 19 and continues on the third Thursday of the month until March. It’s free, but registration is required.

“I think it’s helpful for the parents to hear the perspective of someone with lived experience,” MacDonald said of his co-facilitators.

People will realize there are a lot of common challenges, and the group will talk about those but also solutions and how to combine resources creatively to get the supported needed.

Each meeting will focus on a different topic, including how brain functioning is affected, strengths, transitions, safety and self-care. One night will feature adults living with the disorder.

People can attend all the sessions or whichever are most relevant.

“We cover a pretty broad range,” MacDonald said.

His hope is group will create a community as well as get information about resources available in Waterloo Region into the hands of families.

To register, call 519-749-2932 ext. 3336 or email rmacdonald@lutherwood.ca.

September is FASD Awareness Month. The disorder is the leading cause of developmental disability in Canada, with current studies suggesting between two and four per cent of Canadians have fetal alcohol spectrum disorder.

The term describes the effects on the brain and body of people exposed to alcohol in pregnancy. People with the lifelong disability experience challenges in daily living and need support to reach their potential.

Find out more at www.fasdwaterlooregion.ca.

Receiving a fetal alcohol spectrum disorder (FASD) diagnosis isn’t easy. First, it requires confirmation of prenatal exposure to alcohol. If—and only if—this is confirmed, a lengthy referral process ensues, followed by a diagnostic assessment which usually doesn’t take place until a child is school-aged, and often even later.

But research has shown that early interventions can profoundly improve outcomes for children with FASD. The challenge is that accessing these resources typically relies on having a diagnosis.

 “We want to offer interventions when a child’s mind is still plastic enough where you can maybe change primary outcomes on top of secondary outcomes,” says Dr. Geoff Hicks, who leads the Regenerative Medicine Program at the University of Manitoba, stressing the importance of intervention before a child reaches the age of six. 

Dr. Hicks is co-leading a project supported by Kids Brain Health Network (KBHN) to develop a genomic assessment tool that would identify infants and children at-risk of FASD, who could then access interventions before a formal diagnostic assessment takes place.

Canada’s current FASD diagnostic guidelines include an at-risk designation, intended for people with confirmed prenatal alcohol exposure and neurodevelopmental delays, but who don’t quite meet the criteria for an FASD diagnosis.

“If our tool is able to identify children at high-risk of developing FASD, then that’s a tool that can allow for a diagnosis of this “at-risk” category,” says Dr. Hicks.

The idea, explains Dr. Hicks, is that the result of the genomic tool would be indicated in the child’s medical chart to allow access to care and early intervention, as well as a recommendation for a complete diagnostic assessment at an appropriate time.

The development of the tool is based on epigenetics—changes that happen to a gene as the result of environmental influences, such as prenatal alcohol exposure. The test itself would simply be a cheek swab, which would look for epigenetic signatures that are unique to people with FASD.

The idea is that this would be a quick, cost-effective way to identify children at-risk of having the disability, including situations where confirmation of prenatal alcohol exposure isn’t disclosed.  

This project builds on previous work supported by KBHN (then NeuroDevNet), which sampled over 200 individuals and identified several epigenetic signatures unique to those with FASD— the largest investigation of prenatal alcohol exposure effects on the human epigenome to date.

Hicks and his team are now working to validate those biomarkers.

The team has already collected 150 samples from various Indigenous communities across Manitoba, with the intention of expanding across the province to hopefully collect upwards of 2,000 samples. The current  focus on Indigenous communities has been part of a commitment to the Truth and Reconciliation recommendations pertaining specifically to FASD.

[Photo] Dr. Geoff Hicks and Dr. Brenda Elias at the grand opening of the social biobank.

“First Nations are taking a leadership role in partnering to make a difference for all of Canada and for others internationally,” says project co-lead Dr. Brenda Elias. “They’re rising to the occasion to guide how we, together, improve diagnosis so that it’s closer to home and has a positive impact by taking a more holistic approach in support of all children and families regardless of their ethnicity.”

Developing an early identification tool falls under a larger project being supported by KBHN, called  Translating to the Community (T2C), a social biobank for FASD, and the first of its kind in Canada. Along with collecting biological samples to test for epigenetic signatures, the team is also collecting a much broader scope of information pertaining to the social determinants of health—from economic status, to general nutrition, to other diagnoses—to gain a more fulsome picture of FASD and the associated risk-factors.

Having a social biobank also allows individuals to be followed over time. Say someone’s environment changes (perhaps they are now living in a safe and stable home, which means they experience less stress on a daily basis). This information would be captured and researchers could see how this change in environment affects the way genes are expressed.

In the future, this could lead to identification of other disorders or health conditions associated with FASD, as a way for researchers to discriminate between changes resulting from alcohol exposure and those that are caused by other common risk factors or overlapping disorders. Knowing this can improve diagnosis and inform the best types of interventions to address them.

But perhaps what is most significant is the complete community involvement required when taking a social approach. Dr. Elias has been in the field working with community partners to collect samples, to determine how this kind of genomic tool would actually be implemented, and to inform interventions based on community need. 

“(Our study instruments) are collecting information that now gives clinical teams a broader understanding of families so they will be able to expand referrals to address underlying determinants that drive the development of FASD and associated conditions,” says Dr. Elias. “If you document at the onset of this process then you can start interventions early, and you’re setting up the opportunity to address social inequalities.”

Dr. Elias stresses that when studying FASD, you can’t just look at the biological aspects—the social drivers are equally as important. Taking a community-based approach allows for long term change and brings diagnostics closer to home—a concept which really resonates with Canadian rural communities.

“It’s very action-orientated type research that we have engaged; it’s not research just for the sake of research to understand expression in biomarkers,” says Dr. Elias. “It’s looking at the underlying conditions and historic transmission as well as to what could lead to the development of such conditions.”

Moving forward, the team will continue to collect samples and work towards developing the tool, which they hope will be clinically evaluated within the next five years. The team is also aiming to have the tool tested in the community to determine its usefulness and impact in allowing access to early interventions and are hopeful that communities across the country will participate in the project. 

“When you do research in this way with such engagement, understanding and trust, the stigma disappears,” says Dr. Hicks. “I hope this will be the next thing that really gives these kids and their families the break they need.”

Story by Vanessa Hrvatin

Kids Brain Health Network
September 6, 2019

Community leisure activities are an important source of physical activity and healthy development for youth. For children with disabilities, however, it can be challenging to find local activities that are accessible and inclusive to their needs.

Developed at McGill University and funded in part by Kids Brain Health, the Jooay App is free and helps children with disabilities and their families locate accessible leisure opportunities that are close to where they are and suit their needs.

Co-Principal Investigators Dr. Keiko Shikako-Thomas and Dr. Annette Majnemer worked closely with occupational therapists, childhood disability researchers, parents, youth, rehabilitation professionals, policy makers, physical educators and community partners in order to develop the app.

“The Jooay app is the use of mobile technology to impact health behaviour, build community, and inform policy. It addresses a crucial gap in access to leisure,” said Dr. Shikako-Thomas.

Impacting both the child’s social development and health, the Jooay app improves the number of services offered for children with disabilities, in the different communities, by increasing social awareness.

Following the app’s launch in September of 2018, important updates were made in partnership with Tactica Interactive, an interactive digital media company with experience working in a research context

• A chat function was added within the app to allow for communication and the exchange of ideas between users
• The notification system was updated to allow for prompts and reminders about events and information
• The Android version of the app is now fully functional
• Users can now complete forms through the app and add activities. While the Jooay team still moderates and validates events and activities, users can now directly suggest events in their area, allowing for greater reach and interaction
• Australia will be added to the app in the coming months following interest expressed by researchers

These new additions to Jooay are timely with the recent assent of the  Accessible Canada Act for persons with disabilities. Though the act focus on areas of federal jurisdiction, Dr. Shikako-Thomas believes that the Act is an important step forward in increasing the profile of disabilities and accessibility in Canada.

“The hope is that it will create momentum, and it will improve the conversation or the possibility of conversation around disability. But we do need to keep working with communities and government to make sure that the act also benefits children and families by improving the way we remove barriers to all aspects of accessibility in Canada, including accessibility to leisure opportunities” said Dr. Shikako-Thomas.

The next goal for the Jooay team is to form partnerships with community organizations and municipal governments in order to make inclusive leisure mainstream. In an ideal world, if a child with a disability wants to register for swimming classes, hockey leagues, or music lessons they would go on the city website and look under this activity and be able to register for it. Right now that is not the case in most cities, and parents don’t know where to find this information, which is why the Jooay app is so instrumental in creating change. Strong partnerships with municipal governments will be essential moving forward.

Written by Caitlin Sylvestri

https://www.hwcdsb.ca/298984–St-Thomas-students-wear-red-in-support-of-classmate-and-FASD-

On September 9, students at St. Thomas the Apostle Catholic Elementary School were asked to wear red to recognize Fetal Alcohol Spectrum Disorder (FASD).

“We celebrate FASD awareness day on September 9th, with recognition of this day starting on September 9th, 1999. This day was chosen so that the world will remember that during the nine months of pregnancy,” said Social Worker Jessica Fedoruk.

For grade 8 student Eddie Bunkowsky, the day was also an opportunity to share with the school community his personal journey with FASD and educate peers on how they can show support.

For those unfamiliar with the term, Eddie explained at a school assembly that FASD is a brain disorder that happens when an unborn baby is exposed to alcohol which can cause difficult behaviors and learning problems which last throughout a person’s life.

For Eddie, his challenges involve remembering things and thinking through decisions. With personal supports and accommodations, Eddie and others with FASD can feel confident in their day to day routines.

“I need your help making good decisions, understanding what is safe and understanding what is important,” he said.

“I may need more time to think things through.”

A video created by Eddie helped provide a visual explanation to a challenge he might face and how his reliance on trusted friends is vital. The video is available for viewing here:  https://www.powtoon.com/online-presentatio …

Being vulnerable and honest isn’t an easy thing to do, said Principal Dean Younger, who thanked Eddie for his willingness to speak up.

“To share these things about yourself, with everyone in the room right now, it takes a lot of courage. It’s not easy to do. You really are a remarkable person.”

If you would like to learn more about FASD, please visit the following websites:
http://fasdhamilton.ca
https://www.fasdinfotsaf.ca/en/
https://canfasd.ca
http://www.knowfasd.ca
http://www.knowfasd.ca

Surrey Place at the Forefront of FASD Recognition with New 3D Camera

Surrey Place unveils recently acquired technology that will enhance the way Fetal Alcohol Spectrum Disorder (FASD) diagnoses take place in Toronto.

On September 9, 2019 as part of Fetal Alcohol Spectrum Disorders (FASD) Awareness Day and Month, Surrey Place will host an awareness event and technology launch. The event will take place at 12 pm and includes a demonstration of the Vectra H2 3D camera which will strengthen diagnostic accuracy, and in turn, improve supports for individuals, families, and caregivers affected by FASD.

The International FASD Awareness Day, 09/09 started in 1999 as a reminder that during 9 months of pregnancy, a woman should remain alcohol free, and to create large-scale public awareness of this issue. This year Surrey Place continues the tradition by asking Torontonians to wear red in support of FASD awareness and by advancing FASD diagnostics through the launch of the 3D camera.

The camera will be the first of its kind to be used in Toronto at an FASD clinic and will enhance clinical assessment of FASD for individuals across the lifespan. The new technology will allow for better identification of subtle indicators of prenatal alcohol exposure by improving accuracy of facial analysis.

FASD is brain-based and therefore, a largely invisible injury. However, in about 8% to 10% of cases, there are subtle facial features that can be detected through facial analysis and these features can be used to confirm prenatal alcohol exposure. Confirmation of prenatal alcohol exposure is required for FASD diagnosis and using facial features for confirmation is very important in situations where history is not available, such as when an individual is adopted, or parents cannot be located. The new 3D camera is therefore incredibly helpful.

Dr. Shirley McMillan, Nurse Specialist with the FASD clinic at Surrey Place says, “We are excited to have this new technology because it will improve the quality of our facial analysis.”

The importance of diagnosis in FASD cannot be overstated. “Diagnosis is important because it is the first step toward understanding an individual’s challenges and getting appropriate supports and treatments in place”, says Dr. Valerie Temple, Psychologist and Lead for the FASD clinic at Surrey Place. “Without diagnosis, individuals are often misunderstood as behaving poorly or not trying hard enough. Understanding that the behaviour is due to a disability can lead to instituting supports rather than punishments and therefore better outcomes for everyone.”

About FASD

FASD is an umbrella diagnostic term describing the range of effects that can occur in an individual who was prenatally exposed to alcohol. These effects may include intellectual, physical, and behavioural difficulties with lifelong implications. While individuals with FASD may share common features, every individual is unique with their own strengths and challenges. A common misconception is that FASD is associated with social, ethnic, or cultural backgrounds. However, FASD occurs in all cultures and levels of society. Based on the most current research, the estimated prevalence of FASD in the general Canadian population is 3% to 4%, or about 1.4 million people (CanFASD).

About Surrey Place

Surrey Place provides specialized clinical services for children and adults living with developmental disabilities, autism spectrum disorder and visual impairments. We work with individuals of all ages to learn new skills, gain self-confidence, and find hope. Our compassionate, clinical experts work as a team. We create responsive, reachable plans of care that integrate multiple services, and include the individual’s community. We offer a variety of groups and workshops for individuals, families, and caregivers, as well as extensive education and consultation services to community agencies. Located across Toronto, and with a reach across Ontario, our locations offer a welcoming, inclusive, and safe space for high quality, evidence-based services.

For further information, media contact:

Lisa Binns
Director, Children’s Intake and Wellness
T: 416-925-5141 ext. 2384
Lisa.binns@surreyplace.on.ca

“An Online Behavioural Treatment for Pediatric Sleep Issues in Children with Neurodevelopmental Disorders…”

August 28th, 2019|News

Up to 90% of Canadian children with neurodevelopmental disorders (NDD) experience insomnia symptoms including trouble falling asleep, staying asleep, and/or waking too early. Insomnia can lead to increased challenges with psychosocial functioning, and can contribute to increased symptom presentation in children with neurodevelopmental disorders.

Evidence supports the effectiveness of behavioral treatments for insomnia. However, these interventions are not often available to families of children with NDDs.  Developed by Dr. Penny Corkum (Dalhousie University; IWK Health Centre), Dr. Shelly Weiss (University of Toronto; SickKids), and their colleagues at institutions across Canada, the online sleep intervention program, Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD), offers a potential solution to address this barrier to care. BNBD-NDD is an evidence-based, transdiagnostic online program for parents with children ages 4-10 years old with Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral Palsy (CP), and Fetal Alcohol Spectrum Disorder (FASD) that experience insomnia.

As families prepare their children for the new school year, a good night’s sleep is especially important. The BNBD-NDD program can help parents help their children to sleep better so that they can achieve the best academic outcomes.

Dr. Weiss, Dr. Corkum, and the BNBD-NDD research team are currently looking for 320 families of children with ADHD, ASD, CP and/or FASD from across Canada to participate in their research study to evaluate the effectiveness of BNBD-NDD.  Interested participants can get started at the following link: http://ndd.betternightsbetterdays.ca/

Members of the research team will also be conducting a free Facebook Live public webinar series on sleep in children with NDDs as families prepare to head back to school on the BNBD Facebook page:  https://www.facebook.com/betternightsdays/