R.J. is one of our beloved FASD Survival Strategy Teachers and FASD Trail Guides — He is founder of FB private group for adults with FASD “Flying with Broken Wings”
The day an official diagnosis is given a number of changes happen to a person living with FASD. There is of course, the emotional impact of actually having something on paper that indicates what is going on inside of your body and your brain, something that, up to this point has been invisible for the most part.
Oh, sure there are the ‘small’ physical traits that come with FASD (…”It’s no big deal… everyone can’t be good at everything!”) but to the outside world we don’t look all that different.
So you deal with the emotions, one step at a time.
It can take a while to get this part figured out, but that’s OK too.
So, now you have a name for this thing, this thing that is a part of you. This thing…it’s not something that grew in you, or was added to you…
it’s what DIDN’T grow in you...
it’s not just a part of you…
It IS you!
That is what is hard to accept for some people.
FASD affects every single aspect of our lives, from dusk to dawn, dawn to dusk again… 24/7…
Even HOW we see the world can be affected by FASD.
- We experience the world differently.
- We feel the world differently
- Very often we interact with the world differently.
Many of us, even before being officially diagnosed have always felt and understood that there was a difference between you and I… even if I didn’t know what it was.
But now there is a name for this: FASD.
So, you start to notice the differences, now that you (many for the first time in their lives) KNOW what the differences are. For me, it was a point where I could say “Wow, so that is how neurotypical ( I HATE “normal”) people see/do this? I’ve never been able to do that, in my brain …. etc” because for me the conversation about the differences is important.
It’s important for me to understand what makes me different, not just how I am different… but how understanding the difference can make it possible to bridge the gap between your understanding of this world and mine.
So, I am on a journey to understand how you see the world, because I KNOW how I see mine… so I share what I see, you share what you see and between us we both develop a deeper understanding of being human.
Or, rather… that’s the plan, and as we all well know, even the best plans can turn out wrong. Even with the best of intentions.
The difference between having a diagnosis or not is kind of like the difference between needing and having prescription glasses. (This is very simplified, not saying it’s the same thing. )
With the proper diagnosis … I can ‘see’ clearly now.
And if you wear prescription eyeglasses you KNOW what a difference putting them on can make. Your whole world seems to change now that you can SEE what you could never see before.
And it stands to reason that you would be excited because now you have a deeper understanding of the world going around outside your head. So when a person who never had glasses suddenly has them, it stands to reason that they would ‘drink in’ as much of the world as possible, and be thrilled and excited about what they can now see. And perhaps you want to share this new experience with those closest. I mean, it’s almost like a whole new world, in some ways.
It’s not too long before you start hearing back, from those closest to you comments along the lines of “It’s not all about FASD, you know.” and “Ok so you know what it is, now get over it.” and things like that.
I realize it’s often because we can go overboard with our excitement at this new found realization and need to explore all aspects of how we understand this, and our place in the world.
Really – and this is VERY IMPORTANT –
We need to find our own place, as people living with FASD. As human beings.
You see, for me it IS all about the FASD that has changed my brain and my body from the moment it was being formed in the womb. In reality, even without a name… I have known nothing else. Every aspect of my life has been touched by this, from how I think to how I feel and experience things to how I see, taste, smell and even how I get around in this world. But I never knew why.
Living with FASD can often be like standing in a dark room and being hit (not unlike a pinata) from different directions and never knowing where it was going to come from, or why.
Small wonder we are often so reactive.
So, when a person (older than a child) gets a diagnosis and is able to put a name to this thing it is life changing in so many ways. Please, I am just asking that people in this position be given time and space to find out where they fit in, in their own time, in their own way. And it may take longer for us, many times, most times it does – when dealing with the neurotypicals.
People with FASD are often not making excuses for anything, they are learning! And we often learn by speaking aloud with and through life experience.
It’s all just a part of the learning process.
-Peace out…. Miigwetch…. Thank you.
R.J. Formanek, Founder and Leader at Flying with Broken Wings