It Broke Our Hearts. We Never Skipped a Beat!

- SUSAN (DIEPPE, NB)
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It was Friday afternoon; the sun was shining just as bright as it could. My husband was working, and I was anticipating (with excitement) a visit from a close friend. She was coming to spend the afternoon with me and our two kids, who were ages two and four at the time. I couldn’t wait to show Vicky (my friend) a picture of this beautiful, blue-eyed, eighteen-month-old boy, better known as “Boom Boom”. 

My Path into Research on and Advocacy of FASD 
​Adrienne Peters, PhD

Fetal alcohol spectrum disorder (FASD) was first introduced to me as a young person growing up in Newfoundland and Labrador.  In over 25 years, however, I have discovered that FASD is still not a part of our common language or discussions today, and perhaps more alarmingly, it is not a noticeable part of our discussions around health and well-being, particularly when someone(s) is/are thinking about becoming or is pregnant.  ​

​My name is Joseph Munn. I am from Fredericton, NB, and I am 19 years old. I was diagnosed with FASD without sentinel effects in March 2019. I believe I am a change maker. I have defied the odds. I am succeeding in my life in a healthy way. I am just recently lived on my own for 4 months. I have obtained my licence, graduated from high school. I have been able to maintain employment. I qualified for a world’s competition with the Canadian pole sport and arts federation in June of this year. I have a great support system of people that support and care about me.
I will share what life for me is like with FASD and what I think about it. The things I often wonder about and what I think you should know about FASD.

A Change of Perspective ​

My name is Heather Paul, and I am a Registered Psychologist. I have been involved in advocating for individuals with FASD since early in my career. I have worked in the areas of education, health and justice and have seen first-hand how a diagnosis and appropriate interventions have improved the quality of life for individuals and families affected by FASD. I have also witnessed how the lack of a diagnosis can impact the quality of life for individuals and families affected by FASD.
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​​Creating the Disability Tax Credit (DTC) video series was an interesting and adaptive learning process. I spent many hours researching what is the best way to present information to individuals who may have a disability, and the conclusion is that most individuals, with and without disabilities, perceive information in different ways. Even though fasdNL is an organization that focuses on Fetal Alcohol Spectrum Disorder, any individual with a serious or prolonged disability can apply for the DTC, making the videos potentially beneficial to a larger audience. When planning, I wanted to make the videos accessible to as many people as possible, while focusing examples on individuals with FASD and their parents/caregivers. 
 

​I was diagnosed in 1987 with Fetal Alcohol Syndrome (now Fetal Alcohol Spectrum Disorder or FASD). The importance of raising awareness about FASD is still needed today. I am one of the lucky few; while I might struggle every day, I am fortunate that I have a family support network that has pushed me to continuously better myself. Over forty years ago, Fetal Alcohol Syndrome encompassed an umbrella of many behaviours, characteristics, conditions, and descriptions. By the time it evolved into being known as FASD, research was being done to understand it and how best to prevent it. I am not sure what people will get out of this work, at the very least, maybe my voice might highlight the good, the bad, and the ugly associated with FASD.

The New Brunswick (NB) Fetal Alcohol Spectrum Disorder (FASD) Centre of Excellence is a bilingual, provincial, community-based model that incorporates a holistic, collaborative, client-centred, strength-based, women-centred, trauma-informed approach to its healthcare services. 

My journey into FASD work has been multi-layered and driven by an interest in FASD at the personal, professional and research levels. Having worked for fasdNL since 2015, I am continually reminded of the complexity of addressing FASD and the importance of collaborative approaches.