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The FASD Success Show

The FASD Success Show

Author: Jeff Noble

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Jeff Noble thought he knew all about FASD... until he became a full time FASD Foster Parent. Fast forward to now. Jeff has been coast to coast and from one side of the earth to the other talking, teaching and learning about FASD with other Caregivers, Front Line Staff and anyone who might sit and listen to him. In The FASD SUCCESS SHOW, Jeff and his gang of FASD Insiders will talk about FASD in a real way so that you can learn how to deal and cope with FASD in REAL life, to be a better advocate and a more confident caregiver. Jeff is going to tackle all the hot topics like FASD and aggression, sleep, hygiene, the education system, meltdowns and working with professionals. Pretty much all the things you need to know so that you can focus on being a happy, balanced caregiver. Jeff will make you laugh, he will make you think, but mostly he will give you hope that you CAN do this. Hit subscribe and get ready to transform into the FASD Caregiver you know you can be.
69 Episodes
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Today’s guest is a little bit different from the others. Her specialty is an area caregivers ask a lot of questions about (eating, food and therapy). Unfortunately, there isn’t a lot of specific FASD knowledge about treatment. When we discovered Dr. Federici through a webinar on eating disorders and saw the intersection between FASD and Eating Disorders was so great, we knew we had to get her on the show.   Dr. Federici is a Clinical Psychologist and the Owner of The Centre for Psychology and Emotion Regulation. She holds an Adjunct Faculty position at York University and is a distinguished Fellow of the Academy for Eating Disorders.  “You have to be able to combine what you know to be true about working with people who have FASD and what you know to be true about eating disorders and emotion regulation – and that’s what I love to do in my career. Adapting and fine-tuning treatment for people who are often missed.”  We know FASD is a whole-body disorder. We know there are over 420 co-occurring conditions. What I did not know was how interconnected FASD and Eating Disorders are. Dr. Federici and I explore this as well as:  Types of eating disorders, common myths and general signs and symptoms.  How emotional regulation, impulsivity, anxiety, and depression are tied to eating disorders.  Why the diet culture and social media can be so toxic for individuals.  What caregivers can do if they suspect their child/teen/adult has an eating disorder and the importance of a professional assessment.  Dialectical Behaviour Therapy, what it is and how it can be helpful for individuals with FASD.  “Eating disorders are not chosen.”   FASD is a complex disorder – just like eating disorders. And just like we talk about behaviour as a symptom of FASD, an eating disorder is a symptom or manifestation of something else. It is not about the food. It is what is below the surface that needs to be addressed.   And just like many doctors do not receive appropriate training and education on FASD, many are not informed enough on recognizing eating disorders. Dr. Federici provides accessible resources on her website. I think this may just have to be added to the 10x listen list.   Let me know what your biggest aha moment was.   Support the show (https://www.buymeacoffee.com/FASDSUCCESS)
Anyone that has followed me for a while knows about Amanda Burley – Amanda and her family were the first family I coached after graduating from the FASD Program at the Toronto CAS Child Welfare Institute. Both Tara and I have had the privilege and the honour to become friends with her and her family. I love sharing updates for caregivers so they can follow her journey.  “I am here for a reason. It’s to help kids with FASD who can’t speak like I speak.” Amanda candidly shares some of her struggles, achievements, philosophy and lets us know what is new, including: Sharing the difference between school experiences from those when supported, understood, and accommodated, to those when supports were not provided, and how she advocates for herself. Providing tips and tricks that helped her cope with her disability, including a highly creative PITA and PANDA method. Giving suggestions for how caregivers can support their kids/teens/adults and coping strategies and mantras for individuals on the Spectrum Amanda says whenever someone has doubted her, that makes her try even harder to prove them wrong. Whenever she doubts herself, she remembers her reasons for being and the goals she has set that keep her going. She is sweet, enthusiastic and has proven me and others wrong on her road to getting to where she is today. I believe you will be inspired by her journey and her words. Support the show (http://www.facebook.com/groups/fasdforever)
Today I am stoked to have a returning guest, Dr. Catherine Lebel. We get down to science today. But don't worry, I help make this accessible.  We are talking about a recent FASD research paper she wrote and a current study she is working on.Catherine Lebel, PhD is a Principal Investigator,  and Associate Professor | Department of Radiology | University of Calgary"My research uses magnetic resonance imaging (MRI) to study brain development in children and adolescents. Using a variety of MRI techniques, I study how brain structure and function change with age, or in response to treatments and interventions. I am specifically interested in how brain maturation and brain plasticity are related to cognition and behaviour, and how these relationships may be different in children with developmental disorders. The aim of my research is to better understand brain changes, with the ultimate goal of providing earlier identification and more effective treatments for children with developmental disorders."While this research is valuable, and while the information is interesting, it doesn't necessarily mean it will change practice by itself. But it can be a building block and I felt that people would be interested in finding out what is going on in the research field.And that is why I wanted to bring this information to you.Research Paper:White matter alterations in young children with prenatal alcohol exposure Research Study:Brain Development in Children and Youth with Prenatal Alcohol Exposure (PAE)Support the show (http://www.facebook.com/groups/fasdforever)
The episode this week is a chat with three cool and awesome advocates who are doing great things for caregivers and individuals with FASD. It may be in my home province of Ontario, but what they have to say and are doing can inspire and help where you are. Today I’m talking to Sharron Richards, Mary Hutchings and Mary Ann Bunkowsky about social work, advocating for system change, building support teams and The Parents Helping Parents Project, a phone support resource provided by parent Mentors for parents and caregivers of individuals with FASD in Ontario. Sharron Richards received her Master of Social Work degree from Carleton University and worked in child welfare for close to 40 years, primarily as a community development worker. She chairs the Toronto FASD Network and is committed to bringing her knowledge, experience, resources, and social privilege to ensuring that individuals and families affected by FASD have access to the resources and supports they require. Mary Hutchings has a Master of Social Work degree from the University of Toronto. She spent 38 years with the Children’s Aid Society of Toronto on the front line and as a Manager. She Co-Chairs the Toronto FASD Leadership Team and is a member of the Toronto FASD Network. She is motivated by the resilience and courage of parents/caregivers as well as an understanding that unresolved grief impacts lives in significant and often overlooked ways.  Mary Ann Bunkowsky participates in many community activities and FASD-related projects, but most notably is the co-founder of the Halton FASD Parent/Caregiver and Adult Support Groups. She also serves on the Halton FASD Steering Committee and served on the Family Advisory Committee with CanFASD. Mary Ann and her husband Brad have two sons. She often states that her children are her teachers, and they remind her often of the important role we all play in each others’ lives. In each podcast, the aim is to not only let you know you are not on this journey alone, provide interesting stories about what is going on around the world but also give you inside tips and knowledge to help you advocate for services to make your life as a caregiver and for your children/teens and adults that much better. Today we talk about: The disconnect with social work and knowledge about fetal alcohol and how caregivers and professionals can help each other to build better-informed teams of support. and How the Parents Helping Parents Project (Ontario) came about, how it works, who it serves and how it's evolving to meet the need. "You have to be a champion for families and kids. It isn’t bad kids or bad parents. It is they have a lot of diagnoses. They have a list of labels. When we realized that those labels really didn’t fit them, when you realized what the disability was and you learned about the disability those labels just went out the window. If you put in the right supports, give them the right opportunities a lot of that behaviour stops.” It is so important to keep talking and connecting. Not only as caregivers but also as professionals. You just never know what you are going to learn – and I learned about some resources that are in Ontario that I wasn’t aware of and some interesting projects the Toronto FASD Network is undertaking.  Even if you are not in Ontario, there are some great discussions about social work and social workers in this episode that I think are helpful for anyone. We know that when caregivers feel supported, they feel less overwhelmed, less isolated and more hopeful. I hope listening to these podcasts provides that.  Support the show (http://www.facebook.com/groups/fasdforever)
Language Warning Imagine living five decades thinking you didn’t fit in, but not quite sure why? Despite having a high IQ, you feel like you are a ‘problem child’ because of your behaviours. Today I talk to an adult on the spectrum:  a storyteller. He weaves stories through his words, music, and photography. He is a super cool dude, and I can’t wait for you to hear about him and his outlook. As much as I’m an absolute advocate for being who you are, I still in my deep gut and heart know that we all have to modify a bit to relate to each other. It doesn’t make it wrong. To be authentic. (I moved) from being a victim to it’s a choice how I interact. Reinier has led an interesting life and has a unique perspective. We talk about his journey of self-reflection. How his high IQ masked his disability and the lengths he went to trying to figure himself out - and how it all changed when he found out late in his life that he was on the Fetal Alcohol Spectrum. This interview has a lot of metaphors and contemplation, including:  How a DEVO song led him to the realization of the mask he was wearing. Why he explains he is like a car with a 5-speed transmission – missing third gear. Where he was when he had his aha moment that changed his life. What he discovered when he changed the lens on his view of himself. “Why can’t I be normal, was my universal mantra for 5 decades. Now it is, I don’t want to be normal. My job (now) is to re-inspire people that you are dealing with a conscious being and their brain is not a signifier of their ability of consciousness. Neurotypicals don’t know how hard someone with FASD is working.” This episode is full of stories. Stories about changing his name, conversations with his mom about alcohol use during pregnancy, how getting a diagnosis cleared up wasted life energy and what his philosophy of below the neck and above the waist living means. He has advice for caregivers and explains how he views his role in advocating for and supporting other individuals with FASD. There are so many metaphors and wonderful stories in this episode that I am sure you will find something that fits with your philosophy not only as a human being but as a caregiver or an individual on the Spectrum. Let me know what your favourite quote, story or piece of advice is. Show Notes: Home Page - AwesomeAwareness.com HOME - brillianteye.ca Home - C3inc Email: reinier@brillianteye.ca Support the show (http://www.facebook.com/groups/fasdforever)
What do you think prevents people from getting the message about no safe amount of alcohol during pregnancy? Do you think it is even possible to prevent FASD? Why do we support individuals with FASD but not moms? What about messages geared only to women? These are questions I get answers to with today’s guest, Dr. Nancy Poole, who talks about the 4 Part FASD Prevention Model she was part of developing.  Nancy is the Director of the Centre of Excellence for Women’s Health, a research and knowledge exchange centre hosted by BC Women’s Hospital + Health Centre in Vancouver and is the Prevention Lead for the CanFASD Research Network. She has published over 125 academic papers, book chapters and technical reports over the past decade, and co-edited five books. She has a doctorate in education and recently was awarded a Doctor of Laws (honoris causa) by the Justice Institute of BC in recognition of her contributions to women’s health, including trauma-informed practice and the treatment of substance use and addiction. Guests are rare where you are not going to hear much of me. But this is one. The stories and knowledge that Dr. Poole weaves in this interview about why the current one-step method of prevention is just not working speaks for itself. There is a lot here, but it is user-friendly so that you can apply it in conversations or advocacy with family, friends, professionals, and others.  When I started in this field, I realized most people thought if you just made a pamphlet or a poster, that if you just make people aware of the problem, then they would just change. That is only a very small piece of the story. I felt if we could map out all the pieces that are needed and if we could get all the people that are needed interested in those pieces to see how they could synchronize their efforts, we would have such a better chance in preventing FASD.  We talk about that history of awareness, the transformation from those “poor children and bad moms” to how intertwining Nancy’s research on addictions with FASD resulted in the 4 Step FASD Prevention Model, as well as:  How women may not feel safe to discuss alcohol use. How bringing evidence-based information to service providers empowers them to talk to the women they serve.  The deep-rooted and sometimes generational trauma histories for women, mommy-wine culture, and the collective responsibility partners and the community have in supporting pregnancy wellness pre and post nine months.  The importance of eliminating as many stressors as possible but starting where women are at and not where we what them to be.  Why working with allied professionals and moving into supporting diagnosis and intervention will do more than just a prevention-based model.  I think the idea of wrapping care around women who have these more complex needs makes a lot of sense. It makes it less like you have a lot of problems to we just want to support you and your baby to be as healthy as possible. Come at it with kindness and compassion, rather than bad or willful behaviours.  We all know how difficult it is to change behaviour but adding addiction complicates things even more. That is why a multi-level approach works. We need to provide wrap-around services to moms and families as much as we do to children. Nancy also speaks to her admiration and work with birth moms and the importance for them to be free to “move forward without feeling for the rest of their lives they have to hide in the corner, but instead be part of the story with us."What an incredible conversation. Dr. Poole’s work impacted my own life with the pregnancy for Tara and me. I hope it empowers you as caregivers, advocates, and birth moms. Let me know if you are as moSupport the show (https://www.buymeacoffee.com/FASDSUCCESS)
I’ve never done this before, a bonus episode of the show. I didn’t plan on creating one, it just turned into one. Here, let me give you some insight.  I’m not going to be doing any more workshops or trainings for the near future. I have a project that I'm working on, that’s going to need all of my attention. I give more details during the show. Having said that, I will be doing one more “live” workshop before I turn my focus on this project.   And that will be the upcoming 2-day virtual Insight Conference organized by The Honestly Adoption Company. Yours truly will be one of the 12 leading presenters in the medical, therapeutic and parenting strategies field.  Instead of me giving vague details, I reached out to Mike and Kristin Berry, co-founders of the conference on why you should attend. According to Mike, you will: “gain practical insight and wisdom into how trauma impacts your children, but most importantly how you can parent differently and build trust and build connection with your children.” Mike and Kirstin get it. I’ve appeared on their podcast, they have appeared on mine: Check out: #038 The Berrys: Transforming From Trauma.  They have been where you are. I’ve been where you are. I’m honoured to call them part of my circle and I want YOU to be part of that circle. And it might just be the last time you see me present for a while. If you’ve seen the conference advertised but haven’t made your decision, let me sweeten the deal for you by revealing: Who this conference is for (hint: it’s for caregivers like you). How to entice the professionals who work with your kids to attend (part of it involves professional credits for the first time). What exactly you get access to for an incredible price (including my offer). The more educated you become, the better you’ll become at understanding why your kids act the way they do, and then you will be better equipped to respond and accommodate. The Insight Conference will help you become an even better parent. And I’ll be there - welcoming you like an old friend - presenting on Grief and Loss. So what are you waiting for? Listen to this special podcast right to the end, for the offer, and then head over to this special Insight Conference link to register. Support the show (http://www.facebook.com/groups/fasdforever)
In the 1996 landmark study by Dr. Anne Streissguth, it was revealed that up to 60% of individuals with FASD will have contact with the justice system. Youth are 19x more likely to be incarcerated compared to youth without FASD. In Canada, justice-related costs are among the highest FASD associated costs. While not everyone with FASD will be involved, it is a significant number. Today I talk to two researchers who devote their time to examining justice and FASD.    Dr. Kaitlyn McLachlan, MA, PhD. is an Assistant Professor in the Clinical Psychology program at the University of Guelph, holds an adjunct faculty affiliation the Department of Psychiatry and Behavioural Neurosciences at McMaster University, and is a member of the Peter Boris Centre for Addictions Research at St. Joseph’s Healthcare Hamilton.  Katherine Flannigan, PhD, R. Psych. is a Registered Psychologist in Alberta and British Columbia and is a Research Associate with the Canada FASD Research Network.  Even if your child or the person you support is not involved in the justice system, it is still good to know the latest information and research. Drs. McLachlan and Flannigan recently completed a study: Difficulties in Daily Living Experienced by Adolescents, Transition Aged Youth and Adults with Fetal Alcohol Spectrum Disorder. We discuss their research, the Study, if individuals with FASD are more likely to get in trouble or stay in trouble, and so much more: “The folks who end up in the criminal justice system have so many needs and such complexities it’s so important that we use evidence-based decision making and policy applications to help improve outcomes for them, for their families, for communities, for Society, and this felt like a major vacuum and gap that needed to be addressed.”   What exactly is Forensic Psychology and what it can tell us.  Reasons for their study and reasons why 30 – 60% of individuals with FASD have some form of contact with the Justice system.  Risk factors affecting individuals' involvement and possible solutions that can make things fair for individuals within the criminal justice process.  “We don’t have great data that lets us say, if ‘a’ happens, then ‘b’ happens, then ‘c’ is going to happen. But we do have good tools and approaches for understanding if all of these things are happening, we need to address them so that we can improve the outcomes and reduce risk in different areas.”  This is a “heavy” topic. Probably one of the most technical of my podcasts so far. I do my best to break down the language, but you are going to need to reduce your distractions for this one. There is a lot of information to absorb, but the passion Kaitlyn and Katy have is clear. They are working to improve outcomes for individuals, caregivers and communities.   They have some interesting thoughts on assessments throughout the lifespan and give us a sneak peek at a new study they are conducting right now looking at factors that contribute to the understanding of not only individuals with FASD within the justice system but also judges, lawyers and others. I even appoint the Doctors as Minister and Deputy Minister of Justice to get their thoughts on what they think needs to shift within the system.  I talk a lot about looking for individual’s strengths when supporting individuals with FASD. Kaitlyn and Katy echo a paradigm shift is required from a medical model of FASD to a strength-based perspective. Going from what is wrong to what is right and then determine where we want to go.  Support the show (http://www.facebook.com/groups/fasdforever)
It isn’t too often we find someone who has Prenatal Alcohol Exposure covered from all angles, but today’s guest certainly does. She is an individual with FASD, a caregiver for individuals with FASD and a professional who works with individuals with Prenatal Alcohol Exposure. This episode is a 10 timer – there is so much incredible information from different perspectives you are going to want to keep coming back to it. Once I realized that it was probably the PAE, I started to feel like OK, I can start to work with this, and I can help everyone around me work with this too. Debbie Michaud is a Social Worker with a BSW and MSW – she is currently working on a Ph.D. in Educational Sustainability. She has worked for 24 years in the child welfare field in both front-line and supervisory roles. She is teaching at Confederation College in the Social Service Worker Program and at Sault College in the FASD Certificate Program. Debbie shares a very candid and intimate retelling of her journey and how she came to realize she was prenatally exposed to alcohol. She is a great example of how unique individuals with FASD can be because of what’s called “scattered profiles”. She tells us that despite being on her way to getting a Ph.D., FASD does affect her in some unique ways, as well we: Deep dive into diagnosis: What she was told when she took her daughter for a diagnosis, her daughter’s reaction to the diagnosis, and how she is doing now as a mom herself. An interesting insight of being sensory sensitive and how that hijacked her thinking to the point where it was difficult for her to have relationships. Why you should consider forgetting societal expectations and love and meet your children where they are at. I have had the advantage of raising so many kids that I got to try different ways of raising them. I wanted that normal too. I fought with my kids to go to school, to do this, to do that, to be in girl guides and cub scouts and hockey and all of that stuff. And at the end of the day, some of that stuff ruined my relationship with them. There is so much in this episode. We touch on how systems need to respond to the unique needs of caregivers as well as individuals with FASD. She shares how a PhotoVoice Project created by caregivers of children with FASD came about and shares what the future holds for her. This is an episode about weaving the stories, tapestries, and intersections of our lives together and the importance of relationships. Be sure to check out the incredible and moving Photo Voice Project (link below) and let me know what you think.  Show Notes: Picture This: Life as a Parent of Children with FASD Support the show (http://www.facebook.com/groups/fasdforever)
Weaving FASD Stories, Science and Research When you think of media coverage for FASD what stories immediately come to your mind? Is it a respectful and honest piece or is it stereotypical and sensationalized? Do you know how feature stories are pitched, decided, and developed?  In April 2018, an in-depth feature on FASD appeared in one of our National newspapers. A year later three more features. Last month, a fourth appeared by the same reporter. I decided it was time to dig behind the scenes to find out who this reporter was and how and why she become such a champion for FASD. Vanessa Hrvatin is a multimedia journalist, science writer, and science communications specialist currently working as a freelance journalist and writer. She is also a part-time Communications Coordinator for the DjavadMowafaghian Centre for Brain Health at the University of British Columbia. She holds a Master of Journalism from the University of British Columbia and a BSc. in biology and environmental science from Queen's University. She was the 2017/2018 recipient of the Michelle Lang Fellowship and spent a year working at the National Post and Calgary Herald on a special series about Fetal Alcohol Spectrum Disorder (FASD).  Her work has also appeared in the Globe and Mail, Maclean's, Reader's Digest, the Canadian Medical Association Journal News, the Toronto Star, and Canadian Geographic, and she spent time at Global News BC as a broadcast writer. Her goal is to tell important stories and she has a special passion for science and health reporting. She also happens to be the first journalist I have interviewed for the podcast. And to say I was a little nervous is an understatement. When Ontario released their first FASD strategy I was hearing from people that it was a great start, but we have so much more work to do. When developing my pitch for the feature, I was asking people, what do you not like about FASD coverage in the media. What do you think we haven’t covered? I love how she found a way to combine both her passion for science and writing for the benefit of the FASD. Join me as we go undercover and behind the scenes in the making of an FASD feature and a champion. You will hear: How caregivers and individuals with FASD were the inspiration for the feature and how the opportunity to write it came about. The reasoning behind and focus of each of the initial three features, her biggest worry and her aha moments. The reactions to those initial feature pieces and the who, why and what behind the most recent feature three years later.  Not much has changed. We still don’t know how to properly support people who are transitioning into adulthood. Despite knowing about this (FASD) for a long time, we still have a gap in research and data. We need to move faster.  I am so thankful that we have Vanessa on our team who continues to identify the gaps and tell the stories. She told me because she has spent so much time with the FASD community she has many more story ideas. I can’t wait to see them!  Do me a favour and check out the pieces she has written (links in the show notes), leave a comment on the stories and let Vanessa and the newspapers know the importance of sharing personal, research and science-backed stories about Fetal Alcohol Spectrum Disorder. Support the show (http://www.facebook.com/groups/fasdforever)
A couple of weeks ago CanFASD shared a letter written to a teacher by a student with FASD. I had already reached out to Shana Mohr to interview her, as the Training Coordinator for the FASD Network in Saskatchewan, but was stoked to find out it was her daughter that wrote the letter! Shana has trained hundreds of professionals, caregivers, and individuals with intellectual disabilities about the complexities of FASD. Through her experiences, she has developed an intimate understanding of the services available for individuals with FASD. Shana believes in the need for more research to fill the gaps in these services and to increase the accessibility for individuals with FASD and their caregivers. Shana is also a member of the Family Advisory Committee with CanFASD. “Starting my journey, I googled FASD.  Google tells you everything that is terrible and negative about FASD and nothing good, so I was pretty scared about it. But that’s when I reached out and connected to other caregivers. Then I shifted my focus and decided: We are not going to live scared anymore. We are going to get educated.” While Shana does not always talk about her origin story, we are honoured she shared with us the background behind the letter. We talk about how her daughter motivates her and is her most important teacher in the complex world of FASD, as well as: Where she thought her daughter would be at 12 versus where she actually is. Tips on how to advocate and why she says we make stuff worse before it gets better. Her advice to her daughter and the hopes and dreams she has for her daughter. “A lot of the stress that comes as a caregiver to a child with FASD doesn’t actually come from our kids. It comes from systems – systems that are not set up to work for our kiddos. If I didn’t have to advocate so hard in systems, my stress level as a caregiver would be a whole lot different.” We also touch on systems, stigma and what she has learned from her membership on the CanFASD Family Advisory Committee. Shana has a natural ability to connect with people, and having seen her present, don’t miss the opportunity to attend one of her trainings if you can. If you cannot, then check out this podcast. Be sure to stay to the end, and try not to get emotional, as she reads the powerful letter from her daughter.  Support the show (http://www.facebook.com/groups/fasdforever)
Like a few of the guests I have interviewed for the FASD Success Show, our professional lives have intersected at various points. I first met Nancy Lockwood eight years ago when I was invited to present at the Ottawa FASD Caregiver Group. A lot has changed in the last eight years. Nancy has been living and working in the FASD world for a lot more than eight years however – it has been over 25 years. Her interest in the field was sparked while supporting loved ones with FASD, and then grew through her role as an educator supporting individuals with special needs including brain-based disabilities.  “I became aware of how my actions and reactions were influencing people (with FASD) and if I could stay really calm and patient and listen, that they were giving that back to me.”  From 2015 until recently, Nancy was Manager of the Fetal Alcohol Resource Program (FARP) at ABLE2, formerly Citizen Advocacy Ottawa, a program she helped to design and launch in 2015 in collaboration with Kids Brain Health Network, CHEO and the Children’s Aid Society of Ottawa. We talk about her roles and responsibilities with ABLE2, which I know will inspire you as to what can be accomplished by a dedicated group of advocates, as well as: Practical tools and tips she has learned over the years – some may be familiar and to others it may be the first time hearing them. Advice and best practices for moving beyond volunteer advocacy to building an organization in your community. COVID and its impact on her organization, how it pivoted and impacts on families; she shares four key results of a recent research study.  Nancy’s passion is bringing together collaborative partners to develop innovative ways to support people with FASD and their caregivers. She also shares with us how she arrived at her decision to move on in her career to become an independent FASD Consultant. “A key thing that worked for us – bringing together partners. You can’t do it alone.”  I think after listening to this episode you will understand how Nancy can build teams and moved FASD to the forefront in her community of Ottawa and beyond. She is well-spoken, knowledgeable, friendly, and passionate. All key ingredients for success. I hope you will find something to spark you in this podcast and join me in wishing Nancy well in her new endeavour and welcoming Manon Kelso to her new role. Support the show (http://www.facebook.com/groups/fasdforever)
Have you ever met a doctor, social worker, therapist who just didn’t understand Fetal Alcohol Spectrum Disorder? Have you walked out of the appointment thinking, “If only they could just get it? What can I do to help them get it?” Today, I have answers for you.   I am “geeking out” big time with one of our most popular FASD Success Show guests, Dr. Mansfield Mela about his new book: Prenatal Alcohol Exposure: A Clinician’s Guide. Dr. Mela is a Professor of Psychiatry at the University of Saskatchewan. His clinical practice is out of the Forensic Outpatient Clinic at the University of Saskatchewan and the Forensic Inpatients Services at Regional Psychiatric Center. He is one of the international team of experts that created the world’s first psychotropic medication algorithm for FASD/Prenatal Alcohol Exposure. And now a published author. His interest in FASD began with a desire to better understand and assist his clients. After discussing his frustration with a colleague, he realized it was the manifestation of symptoms of Fetal Alcohol - which led him on a path of greater understanding. “There are a lot of myths about FASD that discourage clinicians from engaging with it.” Dr. Mela starts today’s podcast with a simple, but powerful statement: “I knew I had to write the book.”  He says this is the book that he wished he had in his possession when he was starting out. He shares how he was led to put pen to paper after a comment made by a clinician: about how knowing about FASD was a “waste of time”, as well as: Why clinicians are not comfortable with prenatal alcohol exposure and FASD. History of DSM and inclusion/exclusion of PAE over the years and why despite being 2.5x more common than autism, PAE appears in the back of the book, instead of "leading the parade". The importance of ruling out FASD first, rather than including it last, as a diagnosis. “We asked individuals: Can you tell us your experience in the mental health system? Just mentioning the word FASD and the system will tell them: ‘Well we don’t deal with that here.’ You’re seen as being adequate enough to look after yourself, when you cannot, but not ill enough for a system to take you. Where do you belong?” Always a humble man, Dr. Mela gives a shoutout to caregivers, parents and individuals on the Spectrum for their role and inspiration for the book. We also touch on some of the exciting research on bio barkers and neuroimaging techniques. I know you are going to leave this podcast agreeing with Dr. Mela, that there are significant advances in FASD.  If you want to get your own copy, while it is a hefty read, Dr. Mela does a fantastic job of breaking down each chapter. We also detail how you can present this book to your doctor or clinician - to get them on board with what they can do as a person with the clinical power and clinical skills to help individuals with FASD. Lastly, I will leave you with another simple, but powerful statement which you should pin to your bulletin board or make your screensaver, for when you are feeling discouraged about recognition of FASD/PAE in the clinical world: “Don’t despair. We started this journey. We are not going back.” Grab your own copy: Prenatal Alcohol Exposure: A Clinician's GuideSupport the show (http://www.facebook.com/groups/fasdforever)
If there is one thing I think we can agree on, people with FASD will never cease to amaze us with their resilience and strength in overcoming significant obstacles or barriers in their lives. Chris Fillion, my guest today, is no exception. I have no doubt you will find his story a little familiar and “a lot of” inspiring. It is a true testament to his strength and the people who believed in him. Chris Fillion was diagnosed with Fetal Alcohol Spectrum Disorder and Attention Deficit Hyperactivity Disorder at the age of 9. He grew up in the Child and Family Services system. He has some experience in the justice system, and currently is head of a non-profit organization called WEAREYOU Services for at-risk individuals with a disability. WEAREYOU exists to assist individuals who may become involved with the law. Chris is also an advocate within the FASD community worldwide. His main goal in life is to help others and to provide education on FASD to help break the stigma against people who have been diagnosed with it. “I owned it (my FASD). I live with FASD. I can’t see myself exist without FASD.” We delve right into Chris' early life and talk about how he came to be placed into the foster care system. Despite being diagnosed with FASD and ADHD, he was never told about his disability. This lack of understanding likely led to his involvement in the justice system. There are some interesting themes woven throughout Chris’ life so far, including the importance of: Tethering to good people: how success can be tied to having people believe in you, understand the disability, and provide appropriate accommodations. Reframing: how being “in the hole” in jail was a better place than the general population and how after attending a workshop he realized that caregivers were struggling just like him. Acceptance: after many years of denial, he got curious about his disability and started to learn who he was, what his strengths were and discovered his passion in life. “I see the world differently than others. I see things in patterns. I see people do the same thing everyday…and then I can do a little bit of this and a little bit of that and now I become a better person.” Chris has devoted himself to helping people with FASD not only navigate the justice system but also people in the community understand the disability through his advocacy work and the creation of his non-profit.Our vision is to help Youth, Teen and Adults with special needs (unofficial diagnosis) stay out of the justice system and find them the right program within the community. Help the community understand avenge is not the answer. Provide the tools to support staff and families to understand the differences in the way these individuals may perceive and react to varying situations, thereby helping to solve problems before they get out of control. I have had the fortune to meet and talk with many individuals on the Spectrum who are doing incredible things and are finding meaning to their lives – whether that be as parents, working in a field they enjoy or pursuing something that speaks to their soul. It does not matter if one develops this vision early or late in life: what matters is they have come to a point where Chris says, they accept their disability, accept support from others and have the courage to go after their dreams. Chris ends our discussion with a quote that has kept him going.  Let me know what you think of this cool dude and his story. Chris has great insight and thanks to the people who provided lifelines to him, he is now providing hope and lifelines for others. Support the show (http://www.facebook.com/groups/fasdforever)
Can you believe we are at Episode 55 of the FASD Success Show podcast?    Over the last year, we have interviewed caregivers, birth moms, advocates, individuals on the Spectrum, as well as professionals like my guest today: Dr. Valerie Temple. I reached out to her after seeing a recent research paper she shared on Twitter. I knew she would have some knowledge bombs – and having discovered she has published over 25 research papers and book chapters about FASD, I think you will agree! Dr. Valerie Temple, Ph.D. C. Psych. is a Clinical Psychologist and the Professional Practice Leader for Psychology at Surrey Place, an agency supporting children and adults with developmental disabilities in Toronto, Ontario.  She is also Clinical Lead for the Surrey Place Adult FASD Diagnostic Clinic. She works with Canada FASD Network and FASD-ONE an Ontario advocacy group. Along with family members, researchers, and clinicians from across Canada Dr. Temple helped to create the 2016 Canadian Guidelines for Diagnosis of FASD across the Lifespan.   "When I first started my practice, FASD wasn’t on my radar. Attending the International FASD Conference in Vancouver changed everything. Change is happening (in the field), but change is slow. " We talk about her experience and growth in the field of FASD as well as the important work she assisted with on those Canadian Diagnostic Guidelines, including:  How a scattered profile and a good “cocktail speech” is responsible for so much misunderstanding, missed and misdiagnosis in individuals with FASD.  The importance of getting a diagnosis at any age and how it can be transformative for individuals, their families and birth moms.  A deep dive into two of the 10 brain domains used in a diagnosis: executive function and affect regulation and some thoughts and ideas on how to support individuals.  "Once you have a framework to think about FASD and once you understand what you’re looking at, you have a much clearer path on what to do next and what you can do to support. "We also talk about the recent studies she was involved in looking at Autism & FASD and FASD & Substance Use. There are some surprising statistics and interesting observations Dr. Temple shares from these studies as well as, interdependence, diagnostic services, and the upside of COVID for her Centre and clients. We also do some myth-busting about behaviour therapy that you aren’t going to want to miss.  So many nuggets of information and knowledge bombs that you will just have to dive in. Make sure you have a pen and paper or your notes app open. There is so much here, that this is one of those “10 timer” episodes you will be going back to.  Be sure to keep up to date by following Dr. Temple on Twitter and Surrey Place. Also, do me a favour... let me know if you had any aha moments during this podcast!   Show Notes:  Dr. Valerie Temple on TwitterSurrey Place – Living Your Potential All Your Life  Support the show (http://www.facebook.com/groups/fasdforever)
We have had a variety of guests on the show who have been involved in the education system in one way or another, but today I have a guest who is not only the parent of a now adult with FASD but is a school principal AND an Assistant Superintendent. He shares his FASD journey and provides some great inside knowledge and specific tips in transitioning for adulthood and working within the education system. Simon Laplante has a master’s degree in education and did his thesis on the impact of children with FASD on parents’ relationships with the school, community and each other. Simon has been working in the Manitoba public school system for 30 years as a teacher, vice-principal, principal and assistant superintendent. He is presently a professor at the Université de St-Boniface in the Faculty of Education. Simon’s areas of interest are educational leadership, second language learning, Aboriginal education and FASD. Fully bilingual, he has been involved in public speaking engagements on FASD for the last 10 years both in educational settings and provincial conferences. “Inclusion is about a system that meets the needs of every kid, whatever the needs are. Most of our systems tend to integrate kids. We give them support but, in the end, they want them to fit the system. Whereas inclusion requires the system to change.  It’s very difficult to achieve.” Simon also serves on the Canada FASD Research Network (CanFASD) Family Advisory Committee. We talk about his role on the Committee, inclusion, and: Advice for both teachers and caregivers on working as a team; Why tough love doesn’t work for our kids and what does; and  The importance of getting a diagnosis and how to build your support system. “The biggest danger is you become socially isolated. You will not be successful by yourself. You cannot do this by yourself.” Talking to Simon was just like hanging out at a coffee shop with a good friend, shooting the breeze. But since many of us still can’t do that right now, you can have the second-best thing – this podcast. I think you will enjoy his laid-back style combined with the years of experience. So, let me know what you think and maybe even wish Happy Anniversary to Simon and his wife who celebrated 35 years together on December 28, 2020! Support the show (http://www.facebook.com/groups/fasdforever)
If you think not enough is happening in the FASD world, or wonder what exactly is happening, then you will want to tune into today’s podcast. The FASD Success Show is all about highlighting success stories and today we go to the top of the leading FASD organization in the world – NOFASD Australia. I think it is so important that we take time to see the bigger picture, because sometimes when we are focused on our own reality, it is easy to think nothing is changing. Maybe it isn’t fast enough, but things are changing. I believe this episode is the inspiration some will need right now. In this episode, I talk to Louise Gray, the Executive Officer of NOFASD Australia. She is an experienced leader in the not-for-profit field. She holds a Master of Sociology degree from Murdoch University awarded for a research project centred on community knowledge and awareness of alcohol in pregnancy and has travelled to Canada to observe approaches to therapeutic prison environments, FASD awareness and education, and employment programs. She has been the EO for the last seven years, however, has been part of the FASD community for much longer. “Too often FASD globally suffers from ‘Let’s do an FASD alcohol and awareness project, and let’s solve the problem in 10 months and let’s solve the problem short term.’ Short-termism is deadly for FASD'.” Louise and I talk about what led to her involvement with NOFASD and how Australia came to surpass Canada as the global leader in FASD awareness and support. Including: The similarities and differences between Canada and Australia, the turning point that triggered change at their government level and the need to break down silos in the FASD world. What NOFASD Australia is and is not, the programs and services they offer, partnerships they’ve created or nurtured and the role of the EO. Observations about facial features, the global alcohol industry, and an interesting take and comparison about awareness of COVID and FASD. “The term FASD describes a very specific disability that has a very broad range of symptoms that cause a lot of impact on individual's lives.”  We also talk about Louise’s thoughts on the global awareness campaign: Red Shoes Rock and why she feels that it is an excellent tool for awareness. And if you stay with us until the end, I ask and Louise answers: “Wouldn’t it be nice if…” I think as caregivers you will be interested in her first response. So have a listen. Let me know what you think and if you are inspired by what NOFASD Australia has achieved and some of the ideas presented.  Show Notes:  Website: NOFASD Australia - National Organisation for Fetal Alcohol Spectrum Disorder Podcast: Pregnancy and Alcohol: The Surprising Reality: What is FASD? - NOFASD Australia  A five-part podcast series.Report: The hidden harm: Alcohol's impact on children and families | FARE Support the show (http://www.facebook.com/groups/fasdforever)
One challenge many caregivers have is how to both respond to the struggles their kiddos with FASD have in the school system and how to appropriately work within that system to make change. If you don’t have access to an Education Advocate, then today’s episode is going to help arm you with specific research-backed information from a professional who works with educators to identify integrated supports to reduce barriers to learning in schools. But don’t worry – some of the tips and strategies she suggests are just as relevant for at-home learning and we break it all down for you. Tracy Mastrangelo has focused her career on the social work and education field in both Alberta and the Yukon Territory. Her work has focused mainly on supporting families and children/youth with complex needs, including as the Provincial Coordinator of Wellness, Resiliency and Partnerships (WRaP) an education-based initiative for students with FASD. Tracy has a master’s degree in interdisciplinary studies with a focus on psychosocial interventions in school communities. “How do we provide integrated services into schools for students to reduce the barriers to learning? The business of school is to teach students and deliver curriculum. But we know for multiple different reasons some students have barriers to learning or things getting in the way of learning. “ In this podcast, we define and discuss her role in helping educators and students with both academic and non-academic barriers to learning. Our discussion also touches on her motto for teaching students and: The importance of and how parents and educators can develop a shared understanding of FASD. The complex and specific barriers to learning for students with FASD and why a “bottom-up intervention” model is more successful. Tips, strategies and targeted approaches she has incorporated for not only students she has worked with but her own children. We also delve into some studies and the three overarching themes that define her work, what she does for self-care and what she is doing now. We have had guests on previous podcasts that provided caregiver specific advice – this episode will not only validate what we heard and already know – caregivers are the experts when it comes to their kids and what they need – but it will also let you know about some of the unique ways people are working to incorporate FASD into classroom settings.  “I keep looking for opportunities to integrate research into practice because any way that I can take research and help be someone that integrates it into actual lessons and daily activities that can change practice and hopefully influence policy, it is those kinds of things that jam me and get me up in the morning.” Even if you don’t have kids in school, I think you will still gain some insight into ideas about self-regulation and FASD. Check it out and let me know what you think or if you have any interesting programs in your school district. Support the show (http://www.facebook.com/groups/fasdforever)
Today’s episode comes with a trigger warning. Also, if you play our episodes while your children are in the room, I suggest you wear headphones or listen when alone because we talk openly about challenging behaviours, addictions, mental health, truancy, running away and suicide. My conversation with Megan Tucker about Harm Reduction may also trigger reactions to long-held beliefs or value clashes – but if you feel like you are at the end of your proverbial rope with any of the above, the Harm Reduction Model is a shift in thinking and supporting that can turn things around.  I have known my guest for many years, having attended conferences as presenters and worked with Megan in my CKS program. She is the Training Coordinator, as well as a Prevention Conversation Facilitator at the Lakeland Centre for FASD (Alberta). She studied Humanities at the University of Alberta. Megan has worked at the Lakeland Centre for almost 10 years in multiple capacities.  She created and implemented the Transition to Adulthood Program currently in place at the Centre and was also Children’s Coordinator as a part of the Centre’s Post Diagnostic Services. She provides FASD training in the Lakeland region as well as at conferences outside of the region. If you haven’t heard of harm reduction or harm minimization, it refers to policies or programs designed to lessen the negative social and/or physical consequences associated with both legal and illegal human behaviour.  This is a model that is now being adopted to help people who support people with FASD.  So do you need to implement harm reduction? You might if you feel you have tried “everything” and “nothing” has worked, and you view your child's or client's behaviours as purposeful and willful. Are you constantly frustrated and mad? If so, it is unlikely you are providing the supports they need and harm reduction might be what you need.  “We get so angry at the behaviour and we misinterpret it and then we disconnect and that’s when our child (teen, adult) goes to look for connection elsewhere. What does the brain need? Connection. We all need a connection. We need to be cared about. We need to know that we are good and valuable people."Megan and I explore what we need to understand about individuals with FASD, as well as: What the root of harm reduction is (and isn’t). The brain domains and inconsistencies that make individuals vulnerable.Two keys to the harm reduction model. Harm reduction is unorthodox, as it goes against what we were taught or how we are used to parenting. It can feel like it won’t work, or you are giving in.  You need to ask yourself, what part are you playing in the behaviour? And you need to understand the brain basis behind the behaviour. But the more you can make sense of it, the better off everyone will be.This is a difficult topic for many caregivers. There is no judgement here and like with anything about FASD, you don’t know what you don’t know. So, we offer different ways to provide support to ensure success for caregivers and individuals on the Spectrum. Harm reduction is peeling back the layers to find the disconnect. Figuring out how we can reconnect and show up for our kids, to let them know they are good and valuable, so they don’t find that connection somewhere else. If you want to learn more about Megan’s work, and the Lakeland Centre for FASD, she is hosting monthly Lunch and Chats on Facebook (link in Show Notes) to explore different topics. Let me know what you think about this topic. Is it something you've heard of? Use? Found success with? Show Notes:Lakeland Centre for FASD Support the show (http://www.facebook.com/groups/fasdforever)
It is so interesting how the FASD journey intersects. We all have mentors and people who have inspired us in our journeys. Linda Rosenbaum, author of Not Exactly as Planned, A Memoir of Adoption, Secrets and Abiding Love has been one of mine for a long time. I refer to her as one of the “OGs” – original (FASD) gangsters. Well, she was also the inspiration for another person I recently met on my journey – but before we get to that, we do a deep dive into Linda’s journey. Linda and her husband Robin moved to Canada from the United States during a time of political upheaval. Unable to have biological children, they first adopted Michael in 1987 and later Sara. Linda did not know about fetal alcohol upon adopting Michael and this podcast is her journey from then to now. Linda shares: The clues that led her to suspect Michael was not a “typical” baby and how she felt when despite her insistence medical professionals told her he was fine, that she was just a nervous mom. Insights into his educational journey and the difference between when he was supported versus when he was not, and why it felt like she was being punished when he was expelled and the toll it took on her professional career – not because he was so much work – but because there was so much work and advocacy involved to support him. How recognizing Michael’s interests and using a strength-based approach and accommodations has led to the discovery of Michael’s passion. All these years where people had told me I was a bad mother …. Maybe I wasn’t a bad mother. It reinforced that I knew my child better than anyone else did, which I think is an important message for parents out there – that nobody knows your child the way you do.  We also delve into the sibling relationship, how they supported Sara and the grief and loss the family has gone through. We get an update on where both her children are today and how both are thriving in their thirties. Oh yeah, and that intersection of FASD journeys? Stay tuned to the very end when she gets a surprise entry for her “Couldn’t Put It Down Folder.”  Check it out, let me know what you think!   Show Notes:Not Exactly As Planned: A Memoir of Adoption, Secrets and AbidingSupport the show (http://www.facebook.com/groups/fasdforever)
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Olivia Grace N-M

Could not be more thrilled that this exists! So excited to share this with everyone I know!

Jan 3rd
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