I was. I am. I is. Living with Fetal Alcohol Spectrum Disorder

Kelly Mason

​I was diagnosed in 1987 with Fetal Alcohol Syndrome (now Fetal Alcohol Spectrum Disorder or FASD). The importance of raising awareness about FASD is still needed today. I am one of the lucky few; while I might struggle every day, I am fortunate that I have a family support network that has pushed me to continuously better myself. Over forty years ago, Fetal Alcohol Syndrome encompassed an umbrella of many behaviours, characteristics, conditions, and descriptions. By the time it evolved into being known as FASD, research was being done to understand it and how best to prevent it. I am not sure what people will get out of this work, at the very least, maybe my voice might highlight the good, the bad, and the ugly associated with FASD.

Living with FASD is not easy. It affects individuals in different ways and at different times. But we are individuals.
My struggles with FASD manifests itself in behaviour, cognitive, facial characteristic concerns, or issues. Growing up, understanding, or processing social cues was a behaviour symptom of having FASD. For example, depending on the delivery tone of expressions and phrases, I might take them very literally ... If someone said, "get lost.", to me, that would mean I needed to make myself do that. I would not have processed the underlying sarcasm in time. Other behavioural aspects include impulsiveness and obsessive-compulsive disorder issues.
I did better with book-style learning and completing research papers versus relying on memory and taking tests or exams. I often read books or watch the same movies over again. I can practice the same piece of flute music repeatedly. I don’t deal well in handling my personal finances. I constantly worry about what other people might think about me. I need some routines or rules repeated back to me or explained to me
differently even if I have done them or understood them in the past. As I’ve gotten older, some of these issues don’t occur as often.
My life is a series of moments that can be pieced together only with extreme patience and understanding. I've done or said things that don't make sense to other people, but in my head they either made sense at the time or I couldn't explain them in a way that it made sense to others. It feels at times, like the connectors in my brain are either over firing, or, not connecting at all. It's extremely frustrating for me because I know it's not right, but the damage is permanent. Once alcohol gets delivered to the fetus that damage is permanent.
I was.
In addition to having FASD, I have also struggled with my weight which could impact any recovery from future heart procedures (I originally had open heart surgery in 1981). A few years ago, I had to purchase a hearing aid since my hearing has gone down in my left ear. With one single problem or issue, the effects can ripple into a kaleidoscope of other problems or issues.
To that end, it's taken a lifetime of figuring out what works for me, what I need to do to make me better, and to understand that while it works for me now, it may not always work. Consistency and diligence are excellent methods to utilize while interacting but the best support for me has been my family. My mom (not my birth mother) taught people with disabilities and knew early on that I had FASD. Still, in the mid 80s, my parents fought with the school board to ensure I was included in regular classrooms. I was much slower in learning and interacting with my peers, I was constantly bullied, and I had to repeat Grade 4 (so I could mature socially even though I was progressing well through the curriculum). The board and other teachers wanted me placed in special classes. That would have potentially hindered my future educational opportunities. Adamant, my parents kept me in the regular school system but knew I needed every bit of support that they could devise for me. Tutors were very much needed, especially for math and even social lessons. Despite the early turmoil I faced with my education, and as an individual who was among the first generation of people diagnosed with FASD in Canada. I am proud of my education. I hold a university degree and a college diploma with over 15 years of being gainfully employed. This proves that despite having FASD, education and employment are not outside of anyone’s reach.
I am.
Not understanding consequences is an effect of having FASD. That is not a statement to be made lightly or to use as a crutch. In my case, it could either mean making mistakes and not knowing about them, then repeating them, or needing my parents to help me. Getting money, spending it, and not saving it were very difficult concepts for me to learn. I have some good moments when I set goals and accomplish them. I've also had moments that didn't make sense and needed to be fixed by my parents, usually in the financial sense. I can't trust myself now to large sums of money, either on a credit card or especially in cash
form. It's too easy for me to spend it and forget what I spent it on. With my parents’ help, I've been able to pay off a car loan in good standing and tackle my student loans. My life is coming around, slowly, but coming up to normal functionality. Some would say I am a high-functioning individual with disabilities, and I would agree. Again, however, it's not always the case, and I constantly have to better myself or be nudged in that direction.
I is.
There are times ... when I feel that the world, the circumstances, and people in it are in a synchronized harmony in which I am never able to understand or play a part. I desperately want to blend in, never stand out or be spotlighted. In the professional world of work, I would never be a leader. I am the organizer or planner. Then something happens that makes me glad I am me. That I have something that no one else has. Or will ever have. 
 
I have the unique experience of having a disability that is me. It defines whom I am, and I define it. It will be part of what makes me hang my clothes in a certain order, or of not being able to be the front and centre of a big gathering. It makes me more comfortable around pets versus around children. It also means that I relate better with people older than me versus my peers. It means that at a young age, I was having to be taught social distance and not go around hugging random people. I may sometimes not be analytical or logical enough or may not understand social subtleties. 
Sometimes I speak my mind at inappropriate times making connections that others don’t understand or I don’t know when to interrupt the normal flow of conversation. I know a lot of what I deal with or try to is not normal or will ever be considered normal. But for me it is normal, it's what I know and what I've always known.
FASD is preventable and currently has no cure. It comes with many stigmas and harsher realities for those without a support network, it affects people across all economic, race, religion, and social backgrounds. When one person is affected with FASD, that affects many more not just the one.