ASCS Interviews Local Parent, Shana Mohr on Parenting a Child with FASD

Apr 16, 2021

ASCS interviews local parent, educator and advocate Shana Mohr

Shana Mohr is the Training Manager for the FASD Network of Saskatchewan. She 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 the mom to an amazing daughter with FASD who motivates her unlimited passion for the cause. She is where Shana’s dedication started and continues to be her most important teacher in the complex world of FASD.

Our theme for the month of April is “Understanding Special Needs”.

ASCS is so grateful to have Adoptive Parent Shana Mohr share with us the joys and sometimes challenges involved in parenting a child with special needs. Shana is a strong and knowledgeable advocate for the children and youth of Saskatchewan and we are so grateful to have her share with us!

This month ASCS has chosen to shine a light on “Understanding Special Needs” and the importance of it. With this in mind, could you tell us what families will gain by having a deep understanding of special needs before a child or children come into their lives through adoption and permanency?

When families have a deeper understanding of the needs of the child, they are brining into their home it creates an environment for success.

It can help prevent so many misunderstandings that can sometimes result in placement breakdowns.  When we understand their needs, it gives us the ability to see things like behaviour as a way of communication instead of seeing behaviour as intentional and purposeful.

What would you consider to be the greatest joys and also the greatest sorrows in parenting children with special needs?

There are so many incredible joys of parenting a child with special needs.  My daughter has brought so much happiness and completion to my family.  She is this brilliant human who lights up any space she is in. She is kind, generous, caring and she is becoming this amazing self-advocate with a passion to help other people just like her.

She has continuously taught me so many life changing lessons and through my employment as the Training Manager at the FASD Network, I get the opportunity to share those lessons with so many other people.

I think the greatest sorrow I face as parent to child with an invisible disability is that not everyone else in the world understands or is willing to understand my daughter.  The need to constantly have to challenge systems that are not FASD informed as well to live in the shadows of the stigma surrounding FASD, that causes the sorrow.

One message I always tell my daughter is that you do not always have to be the one to change to “fit” into the world, the world can change to work for you to.

Navigating school for children with special needs can be a challenge. What advice would you offer to parents when working with teachers and the education system?

Navigating the school system is no easy task when you have a child with needs. I have had some really awesome experiences and I have had some really tough experiences.

What I have learned through some of those tougher experiences when advocating for support was the educational professionals are not against you.  Often, they want the same thing as you, for your child to have access to the supports they need.  What the educational professionals might not understand, is how your child’s disability impacts them.

In process of coming to understand this, I have learned that it is so important to have support for you when navigating the school system.  Do not go into any meetings alone, take your support with you, if you can have another professional in attendance to be able to speak to your child’s needs.  Often professionals just see us as the “parents” and not the experts we are, so having someone else there can foster a better impact and get them to buy into the conversation. 

As an experienced and knowledgeable parent of a child with special needs, what is one thing you wish someone would have shared with you, showed you or taught you at the beginning of your parenting journey?

I wish that someone would have told me not to believe in all the stigma surrounding FASD.  At the start of my journey into the world of FASD, I did my “research” via google and read as many books as I could find on FASD.

What I learned in process of “research” at that time, was the majority of everything that was written or found online about FASD was misguided and negative.  The language society has used to talk about FASD has been incredibly damaging and stigmatizing.
This resulted in me being scared and worried for a long time until I decided I could not live scared anymore and became educated with the proper information about FASD.

When I became educated with the proper education on FASD our whole life shifted for the better.  Becoming educated has not only helped me understand my daughter better, it also helped me shift my whole perspective on life and see so many aspects through a new lens.  I am not the same person I was before my daughter came into my life, I am a better person because of her.

The ASCS wishes to express our gratitude to Shana for sharing her story with us. For more information from Shana on FASD, join us for her upcoming FASD Workshop with the ASCS held virtually on April 22nd. To register click here!