On being diagnosed with FASD as an adult.

This is a guest post from RJ Formanek.  I am immensely grateful to RJ for sharing his thoughts.

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 and 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.

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 and 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.

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.

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.

They are often not making excuses for anything, they are learning!

So, the next time a newly diagnosed person starts 'going on and on' again about how 'it's about the FASD' please PLEASE understand...

It's all just a part of the learning process.

-Peace out.... Miigwetch.... Thank you.

Why an FASD Diagnosis Is Important (A parent's view)

This is a guest post written by MAPasadena.  It was originally shared on Facebook and is reposted here with her gracious permission.

We have two daughters, adopted in Russia in 2000... One of the last one trip, one week adoptions I'd think.

Our youngest has FASD. I "knew" she was affected from the moment we met her. They are bio sisters, were a package deal and no way were we going to say no.

I think because I always saw her quirks and glitches through the prism of FASD, we parents have suffered very little additional frustration....many (who don't get a dx for their kids) acquire our own little dose of PTSD!

I realized when she was in the 4th grade that she would never earn a standard HS diploma. It was sad and freeing at the same time. She is a joy to have in our lives. Funny, sweet, loving, hardworking....quick to become exhausted, often confused, open and honest when she feels safe. My thinking has always been that we would never be able to knock the corners off her square peg, that we had to make sure the round hole was big enough she could fit in it which room to be different.

I'm on a group for parents with teens and young adults with FASD. What an endless pit of misery. So many of these families had no idea of FASD, before adoption, during the process or anywhere along the way when the child was young enough to parent differently. I hardly ever post there because our experience with our almost 16 year old is so positive....I do not want to rub salt in their wounds....but.....

I do want to encourage anyone fence sitting, dreading pursuing a formal Dx....do not fear it and do not put it off. Things can get so so so dreadfully bad for these kids as they become young adults. Sure, (hearing the diagnosis is) so sad....I gave up "Back To School Night" after 9th grade.....it just made me sad about how low her abilities are.....and made me feel a distance from her, fear being a crappy element in a relationship.....but she is not sad! She is love personified. She has space in her life so she can express her compassion for others. She has a sense of humor that delights and an eye for beauty in the world that allows her great artistic expression.

Will our retirement life look different from those with typical kids? Very likely. Will it be good life? With her in our lives, it will be without a doubt.

Don't let fear slow you down. Get the most inclusive Dx you can, you can always back off later if it's limiting. Build a case history that explains their quirks as different, not as failures. Set everyone up for successful transitioning to young adulthood.

I know some here don't want to hear about problems....and the parents on that FASD Teen Young Adult site don't want to hear about successes! (They are so down that they just need a place to vent with other BTDT parents)  I have feet in both communities....many communities. Bottom line, when it comes to a diagnosis don't wait!!!