On Becoming a Change Maker

​Joseph Munn

​My name is Joseph Munn. I am from Fredericton, NB, and I am 19 years old. I was diagnosed with FASD without sentinel effects in March 2019. I believe I am a change maker. I have defied the odds. I am succeeding in my life in a healthy way. I am just recently lived on my own for 4 months. I have obtained my licence, graduated from high school. I have been able to maintain employment. I qualified for a world’s competition with the Canadian pole sport and arts federation in June of this year. I have a great support system of people that support and care about me.
I will share what life for me is like with FASD and what I think about it. The things I often wonder about and what I think you should know about FASD.

​A large problem is FASD to many is an invisible disability. Due to the invisible part, it is hard for people to see my ability. People in my life have seen me as lazy, indifferent, disorganized, distracting, defiant, and stubborn, and the list goes on. I am consistently inconsistent! I didn’t know that was a problem until I got my FASD diagnosis. When the diagnosis came, my mom worked hard to break these misconceptions by providing education to those that would listen. I was denied a one-on-one worker in school. I was denied a disability support plan because, on paper, I didn’t look like I needed help because I was working, getting my licence, living on my own and having social outings. The person didn’t realize the amount of time, energy, support, and sacrifice that my family gave me so I could obtain this quality of life. I was able to do what I was accomplishing in my life because I had a wheelchair for my brain that gave me the help. It allowed me what I needed to get done. I was told I was doing great and asked why I needed supports. Take those limited supports away that I have, and I risk becoming a negative statistic. I have learned I will always need a wheelchair for my brain. That could be a person, technology aid, strategy, or life tools in my life toolbox. I am accepting that to live my best life. I need this. When society is educated, I hope they can see the invisible disability and see what we need to have abilities.
 
I have had several diagnoses. I have been diagnosed with ADHD, anxiety disorder, attachment disorder, depression and learning disabilities that affect my comprehension, reading and math. After I got my diagnosis, I thought, “oh cool, so I have FASD.”  I don’t think I understood what the diagnosis meant 100%, but I am learning every day. I know now that my FASD is why I am tired and messy that I am not lazy. It is the reason why I tell people what they want to hear, not the truth. It explains why lights bother me. I can’t sit still, and I am not doing it on purpose.
Did you know it is also the reason I can do everything I am supposed to do for a person my age, then, the next day, it is like my brain doesn’t work and I don’t know what I am supposed to do? FASD is why I will go outside in -20 in a hoodie and wear a hoodie with the hood on and long pants in +20. When I am in a group of people, I become easily distracted, hyper or tired. Yep, that is FASD too.
 
My mom started an FASD family support group, and I got to meet other people with FASD. It is cool because some of the things that bother me bother them. They also have a hard time with things, like me. They don’t expect me to remember their name or call them all the time. They don’t get offended if I forget stuff or to call them.
When I look back on my life, people told me I needed to have this for supports, and I should have that for supports. But, unfortunately, I didn’t have what professionals said I should have.
Before my diagnosis, people didn’t question if I was capable of accomplishing tasks. People said I was a typical boy, but I wasn’t. Now that I have a diagnosis, people question if I can do this or that. Should I be doing this or that? Examples are living on my own, driving, owning a car, managing my finances, travelling by myself, working.
 
I had to wait 10 years to get my diagnosis. There were hundreds of appointments over 10 years, my mom said, trying to “figure me out” I was a foster child in kinship from 18 months to 5 years I was bounced from family member to family member. I was a happy, energetic, loving boy. My birth mom was not well enough to take care of me. She did the best she could with what she had. So, my family stepped in, and here I am today. I still talk to my biological mom, have a relationship with her, and I love her. I am not angry with her because she drank. I wish she had the support that I have now because I know she didn’t.
 
I feel the world needs better education on FASD. The more I learn, listen, and talk about FASD, the more I see it is not understood. Doctors are still advising pregnant women drinking alcohol is safe in small doses. Drinking is everywhere. It is entertainment, and society tells us it is ok. It isn’t ok.
The lack of awareness and understanding is why I am a change maker. I know it is not ok to take drugs or alcohol during pregnancy. I also know I’m able to be successful; I am smart. But, supports are hard to get. Everyone in life needs help in one way or another.
 
I didn’t realize FASD was a global issue. I learned that there are a lot of people with FASD. I have learned it is common in many countries. I am not surprised because drinking is common. On TV, when you go out to eat, every corner in my hometown is a new microbrewery. They are now selling alcohol in grocery stores. There is a high prevalence in the commonwealth countries. Countries that are well educated and have many resources are not educated on this diagnosis. More awareness is needed. Drinking alcohol is a world epidemic.
I didn’t know FASD was a problem in Australia, Russia, and other countries, including South Africa. I didn’t know that FASD was a world issue.
I know there is research being done, and I am happy about that. But I hope that we can reduce these shocking facts and negative stigma with more conferences and more awareness.
There needs to be more invested in early diagnostic and post-diagnosis. With more supports, interventions and resources, I hope that children will not have to have negative labels. People think they choose to act a certain way when that isn’t the case. I want people to see that my brain doesn’t allow me to act or do something a certain way that day.
If I had more one of one supports, increase the frequency of my breaks between classes, softer lighting, educators that were educated, safe places to go in the school and community, hands-on learning, support and education centers. Housing centers for our specific needs, easy to navigate health care and community resources. Life would be much easier. People that have this diagnosis with no supports will have a hard time with life; they will have mental health issues, low self-esteem, low education levels, and fall through the cracks.  
I know I am going to continue to be a change-maker and speak up for those that don’t know-how. I will encourage people to accept help and talk about their situations to become a statistic in change and not defeat.
Thank you for giving me this opportunity to share my side of the story of FASD.