The FASD Success Show Jeff Noble

We know our active audience has a higher percentage of moms over dads … but we know the dads are out there. Whether they are in the main caregiving role or behind the scenes with their partner, dads or male influences are an important part of the caregiving journey for many families. That’s why I’m super stoked to have my next guest Bill Michaud talk about his FASD journey. And it just happens to be Father's Day when we release this episode!
Bill is a husband (to previous podcast guest Debbie Michaud), a foster and adoptive dad, works in the developmental services sector, and as he reveals on the show today, suspects he is also on the Spectrum. This guy gets it. 
“We don't take on what's going on internally for (our kids) and apply it to what's going on externally, because we don't know and they don't have the ability to tell us. So, everyone is going around assuming...we need to stop making judgements.” 
I suspect if you are a dad or in a role like Bill, you may not give yourself enough credit for helping to create the environment and be the support that your child/teen/adult needs. If so, I invite you (and anyone who wants a unique perspective) to spend some time with Bill and me. 

This is an interesting episode that goes full circle from Bill not having a clue about FASD, to becoming a foster/adoptive dad, to learning about FASD through his kids and clients to contemplating he just may be on the Spectrum.  
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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.   
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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 letting 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 that 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. 
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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)


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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. 
 
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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 
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