#041 The visions and voices of adults with FASD

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It’s great to be back to our Podcast! How important are stories in your life? Not only do stories help entertain us, but they also educate, and in some respect are medicine. To celebrate our return after a brief pause in our schedule, we have a double feature. First, we hear about a unique program that provides adults with fetal alcohol spectrum disorder an opportunity to share their stories or medicine, and then we hear from an individual who is living his life on his terms. 

Individuals with FASD want their voices to be heard. They should be heard. I am excited to bring those voices and highlight programs bringing those voices to educate, entertain, and highlight success stories.

First, we talk to Emma Bergen and Suzanne Mozdzen from the Visions and Voices program out of Winnipeg, Manitoba. This is an interesting program that recruits adults with FASD to be part of a unique speaker’s bureau. The program aims to increase awareness in communities in order to reduce the stigma of FASD and to encourage healthy living. 

“We believe storytelling is a powerful tool to increase dignity for those living with FASD. They are the expert at telling their stories.”

In the first half of the podcast, Emma and Suzanne outline how the program started, topics covered, how they recruit and train the speakers, how they have adapted for COVID, and some ideas about the future.

There are great benefits to this program not only for the adults but also for the audience. While it would have been great to have an individual on the show, we just couldn’t pick one over the others – so I encourage you to check out their website, read the speaker bios, and if you are in Manitoba, be sure to check them out when they start speaking again.

I reached out to my next guest because of an awesome post his mom had commented on in our private Facebook Group. I asked for success stories. She posted a picture of her son, Stephen Grivois, who is a volunteer firefighter. And one amazing dude. He meets and overcomes his challenges either with accommodations or his determination. 

Despite having both physical (Cerebral Palsy) and mental health challenges that led him to some dangerous situations in his early 20s, he has worked part-time for the last 12 years at the US Naval Base in Groton and the last nine as a volunteer firefighter with the East Great Plain Fire Department.

Stephen talks about his work, volunteering, his passion for photography, and how his desire to lead a healthier lifestyle led to his new hobby biking (up to 20 miles I might add), and lost 60 pounds in the process. We talk about his typical day, as he lives on his own and he gives some solid advice for not only caregivers but also individuals on the Spectrum. 

Stephen is a great example of what individuals can achieve, however, make sure you stay tuned until the very end, where I provide some thoughts on how I accommodated him during this session and a few tips for caregivers as you look to the future for your loved ones.

It sure feels great to be back! Let me know what you think of our double feature in the comments!

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