FASD, school and mental health, the need for a Federal or Provincial bill to change things.

 So as Youth Accessibility Leader I get to hear about things, seminars, conferences, meetings, funding for projects all kinds of things. One of those things was with the Youth Policy and Partnerships Unit of the Public Health Agency of Canada, Government of Canada who helped me to promote FASD and mental health awareness in school. It sounded really exciting at the time as I am convinced a lot of the mental health issues those of us with FASD have are because we live in a society that does not understand invisible disabilities. 

It is strange with a few accommodations those of us with FASD can thrive and do our best but meet up with those people who do not understand and prefer to blame or shame us and life can become really difficult destroying our self worth and confidence. When I first got into this project I was so sure everyone would want to learn and listen as so many say they are interested and want to know what to do to help. Yet by the end of the project my self worth and confidence was put to the test. I found out how important those of us affected by FASD, mental health or developmental trauma really are. Unfortunately I used to believed with all the talk that change maybe coming to better support those of us with FASD, mental health or developmental trauma issues but I was in for a cruel surprise. I now believe this will take legislation to bring about the changes needed that those of us with invisible disabilities can be accepted for who we are, and who we can become. So I guess we have a lot of work to do if we are going to get that legislation in place that our families affected by FASD, Mental health and developmental trauma can have the very best lives we deserve.

So I have included my report to the Youth Policy and Partnerships Unit of the Public Health Agency of Canada so everyone can see it for what it is. 

See my report next:

June 3, 2023

I have decided to use an essay format to share my report and have asked my friend Rob More to help me write it as I have found the entire project to be very challenging with exams approaching and a real-life experience about mental health and wellbeing. Rob has three children with FASD and has helped me find my voice to speak up for disability rights.

The project began with me recruiting three people to help me develop a presentation.  Theresa Lalonde-Pankow is a retired principal and she did some of the initial conversations and helped me organize the event.  We discovered early on that the schools we wanted to do the presentation at were resistant to us coming for some reason.  All schools chosen were chosen because I know there are students and staff in those schools struggling with FASD. One school communicated they didn’t feel like there was a need since they only had one student with FASD, which is surprising as FASD affects four percent of the population, and not everyone has a diagnosis or chooses to identify having FASD. I was not diagnosed with FASD till I was fourteen and it took six years to get that diagnosis even though my family suspected it. Another school was unwilling to promote or endorse the project without knowing the entire content of the presentation ahead of time, which is difficult as audience participation, education and questions can change how the presentation goes if more questions are on a specific subject. The school I attend was willing to host the event in the evening but unwilling to promote or endorse as well.  We also didn’t get confirmation that we would even be allowed to do this until the end of April which made marketing extremely challenging.

However, I recognized the importance of bringing awareness to the community regarding FASD and Mental Health so we proceeded with developing the presentation.  I also got Mark Pankow, a retired Behaviour Consultant and Karen Moore, a mental health clinician who is also Program Coordinator for the Adoption Council of Ontario to join me.  The Rural FASD Support Network gave me access to their marketing person and their videographer.  They helped me create the flyer and video which I have included here as well. 

Flyer Video 

With Theresa, Mark and Karen, we got to work creating the presentation.  With my story being the centrepiece, Theresa shared how FASD impacts me at times,  Mark explained why some of the decisions I make are beyond my control, and Karen shared how trauma and FASD can impact my mental health and well-being. I used my story as it would be unfair to use anyone else's story without permission and many people are afraid to speak out because there is such a stigma around FASD and mental health.

All of this was put to the test, though, on the night we presented, no one from my school came.  My entire purpose of this project was to give my school and school board an opportunity to understand me and others like me through expert explanations and no one came.  It was devastating.  I was unable to continue that evening and couldn’t understand why I am not important to them, when they say I am and that they say they care so much. How all those staff at school would say they do not understand me, or understand FASD or how to help but they could not take a few hours out of their life to come to the presentation to learn about, FASD and mental health. My brother and some of his friends who also have FASD and have  even more problems than me are to attend my highschool next year and I am worried for them with the lack of awareness. However, I refuse to allow this to impact my mental health and wellbeing, as I have a lot of work to do if people are going to be more aware of FASD and mental health.

When the school board heard what happened, the superintendent asked for me to share my notes so it could be given to our SEAC.  The summer camp I had presented at last year asked me to come back and present again to their counselors this year so kids with FASD can attend overnight camp, again this year.  The Rural FASD Support Network asked for me to bring the entire team and present again in a recording studio so they can distribute the presentation to all 72 school boards across Ontario. A videographer has been hired and we are just working on a time and place to bring the team together in a recording studio.  I also just found out an article I wrote has been published in the Catholic Principal Council Ontario magazine which goes to all 2200 Ontario Principals.

It is amazing to me that I had over 90 parliamentarians come and hear me present this past October endorsing Bill S-253 and 74 MPP’s come and listen to me at Queen’s Park in February of last year, but I can’t get anyone from my school to come.  I know now though, I have a lot more work to do if there is to be a better understanding of invisible disabilities.  I also know if I allow this to silence me, what chance does any other student with FASD have?  We have to change this so the next generation does not need to go through the same things I and others like me have had to deal with on a daily basis.

This experience was very valuable to me and encouraged me to keep going and advocate even more for disability rights.  I got to take a leadership role and give direction to others, I learned about how to make project plans and importance of following timelines, and had the wonderful opportunity to help bring awareness to my community about the strengths and challenges of living with FASD speaking to others and community groups from what I have learned from the team.  As a young person living with an invisible disability, like FASD this experience will be forever etched in my mind for both the positive and the negative. Since this I have taken a role with Adopt4Life as a peer mentor in developing a program to help younger children understand FASD, mental health, and self advocacy. The younger that children understand they all have their own superpowers that make them special the less shame they will carry having FASD, helping prevent mental health issues that are created for people like myself by a society that does not understand invisible disabilities like FASD. I have also been asked to present with the Adoption Council of Ontario this fall as a result of this project. I am so grateful to have had the opportunity to work on this project and it is only the beginning of what needs to be done.

Thanks,

Shelby De Rose