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:
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.
Contact: Shana Mohr: [email protected]
Website: FASD Network
Visit the CanFASD: Family Advisory Committee
Join our Group: FASD Caregiver Success
Dear Mr. C
I am writing because it is my only way I feel comfortable with saying this. As you know I struggle with school a lot. Some reasons are big, some are little. Some are fixable well others are not. I am telling you this because I know you can help. You are my favorite teacher after all. I am very lucky to have you as my teacher.
Sometimes at school I feel uncomfortable. Some of the reasons are because of other students, the volume of the space I am in, and that honestly, I don’t have any friends. (Covid really doesn’t help}. I used to have friends, I even once had a best friend, and her name was C. I miss her a lot. So I always hope I will make new friends. I do but they never last.
I also struggle with school because of my anxiety. A lot of things especially people trigger it. I am not going to say who or what but a lot of the times it’s the students. The way they act sometimes is just not okay to me or to anyone really. They do things that I am not really comfortable with. They do things like swear or do or say inappropriate things or will say things to me that make me anxious or uncomfortable. They say things like, why are you so quiet? Can you not speak or are you retarded? Yes someone said that to me once which is really not okay. It is also awful that they would even say that.
They also sometimes judge or accuse me of doing things that I didn’t mean to do like one day in gym we were playing hoola hoop catch the flag and I went to tag someone and I did and I didn’t mean to touch them where I touched them it was the only way I could tag them. Most of the time though they complain that I never do anything in gym. Which I don’t. I used to but this year with COVID I am not as comfortable as I used to be with doing the things that we do in gym most of the student’s don’t even take COVID seriously at least at school they don’t.
I really wish that these things to change or at least be resolved just a little. My mom always say to me that you don’t always need to change in order to help yourself the world can change around me. I know that the whole world doesn’t revolve around me but it could help me to. It would also help you because you’d be knowing that you helped someone it would also take a lot off your plant That is all I have to say.
From your student.
PS thank you for your time in reading this.