#059 Shana Mohr: FASD Trainer, Advocate and Mom

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.