So Much to Say there are Just No Words

There has been a lot of chatter on line these days about this new PSA

Go watch - see what you think.  I'd be interested to hear.

I've listened to parents say how good it is to see an ad that shows the truth about how hard FASD is.  I've listened to other parents talk about how hard this is to watch and how much it hurts them to think about their own children in these terms.  I've listened to adults on the fetal alcohol spectrum and to outsiders who have no personal connection to our community.  I find myself in bits and pieces of all of their comments and still somehow struggling for my own words.  I've asked permission to share some of theirs and where I have received it I will but I feel like continuing to wrestle with it myself is important.  For me this video cuts to the heart of the dilemma I struggle so hard to express over and over here.

 If we know how to prevent a difference should we be doing so?  Does that make the difference automatically “BAD”?  There are so many differences we have learned to accept – imperfectly true – but in this wholly imperfect world we have made at least some space.  Those that are blind or deaf or paralyzed or of different skin tones or different religions or different sexuality are not automatically shunned or separated.  To be sure racism, sexism, homophobia, religious persecution, ableism all still exist but they are no longer universally accepted.  There are people who will stand up and say “NO – this is not acceptable!”  And they are not only the people who ARE different fighting and pushing back on that hate.

What if though, what if we knew how to “prevent” homosexuality?  Or blindness?  Or a particular belief system?  Would it be ok to run public service ads promoting prevention?  Especially ads that focused entirely on fear – on the worst possible outcome for their lives?  Would it be ok to film a PSA that showed a young deaf boy – never taught to sign or lip read- punished for not hearing until he became depressed, violent, abused alcohol or drugs to escape his pain and confusion, ran away and living on the streets – to encourage women to – I don’t know - what ever prevented deafness in this hypothetical construct.  Having had many deaf friends in college (I attended a school with a specific program for deaf students) I feel pretty safe venturing the guess that the deaf community would be up in arms and they would not be alone.  How about an ad that showed a young homosexual being bullied and shamed into depression and possible suicide attempts then being killed by thugs like Matthew Shepard?  So that women would avoid what ever "caused" homosexuality?

I’m not saying that the information about the cause of FASD should not be out there – should not be widely distributed to the public, that we should not try to minimize the number of children born exposed.  But I AM tired of the relentless negative portrayal of those affected.  I’m tired of seeing their struggles and pain shown as inevitable when huge parts of those very struggles are preventable.  Let's work on prevention - lets work on prevention of their pain with understanding and support.  Being born deaf, or blind or homosexual or to a certain set of religious beliefs or of a certain race does NOT doom one to a life of misery and destruction and neither does being born alcohol exposed.  

Extending the Conversation

I was really excited and energized by the conversations sparked by my last post.  They mostly took place in other forums but that is fine with me.  I don’t care where the conversations happen so long as we are having them.  I did want to say thanks to Jodee and Suzanne for having a part of the conversation in the comments to the last post  so that folks who were not part of the forum, Facebook, and private message conversations could get a taste of it.  There were some things said (not by me) that I thought were too profound not to share.  So I’m reproducing some of the chatter below.  As always I have asked for permission to share and NOT included anything where permission was not given.  I also have honored folks wishes to be identified or not identified with their comments. 

Since these are snippits taken from various conversations I have done a few very small edits as needed to clarify context. These are in parentheses 

ME:  Suzanne sounded very judgmental to me -  I had a hard time being neutral in my reply but if I want others to hold off judgment for our kids I need to too right?

Victoria: LOVE your response to her thought and very valid points.  Something I think about often myself

Jenn:  I don’t know sounds like frustration to me.

RJ:  Yes, it was frustration mixed with some judgment I’m afraid.

Linda:  How brilliant (it would be) for our kids to learn to be so nonjudgmental of themselves that they could say that (meaning “Look I’m sorry. I have impaired impulse control abilities. Could we please handle the coffee payment differently while I am here? Is it possible to have a locked location for the money?“)

Mom of FASD child:  And that kind of workplace (where they could be open about their challenges) would be wonderful!

Savanna: Wouldn't it be great to be able to say Sorry I have impulse control disabilities, please take this back, it belongs to you. And the other person says Yeah? That’s cool and really interesting, Thanks for giving it back - how can I accommodate you? 

Me:  Right what if the default response was - Is there some way I can help?

Savanna: We all know that kind of honesty would get you rolled eyes and you would be considered insubordinate and seen as making excuses and a lie right there (about your disability)

Me: Yes because people really believe behavior is ALWAYS voluntary and willful.

Savanna: Agree, no one would be hiring us. Know what else they would say? You look fine to me, as they called the police or fired us.  They'd say we had intent and forethought and malice.  And we are very aware that is how that will go down. We are judged by standards that don't make sense for our disability.  If we can't be accepted for telling the truth then we have no choice but to lie, cover up, and live in shameful silence

Jenn:   About that commentor – I see a lot of frustration there more than anything.  I think this is a program that matters very much to her and having these “failures” really hurts. Like it possibly puts the program in jeopardy.  And it sounds like she has invested a lot in making it work – in doing something she believes in – giving folks with disability a chance.

Me: Thank you for that “perspective” I had not thought of and it makes me a lot more understanding.  I feel bad for not seeing it myself.

RJ:  When people feel like that they often come across as hard-ass...Sometimes, these people are not enough in touch with their own feelings of guilt or sorrow and this comes across as well.

Me: See this is why I love this community – you guys have compassion for everyone!

RJ: (about the post itself)  Wow... that "RJ" guy sure has a lot to say, huh?

Me:  He sure does – maybe I just need to have a regular piece called “RJ Says” 

RJ:  Maybe some different perspective (on what I originally said that inspired the post) though?  NTs value us being able to 'fit in" for their benefit to be sure, and No, in effect they are not honoring our true selves by expecting us to fit into a nice neat mold. And Yes - That is hugely insulting... but here's the thing, it's not personal, it's systemic... they don't call this a paradigm shift for nothing.  Society as whole, no matter how much we hope, is not there yet. So, this then comes down to a question of picking and choosing battles, in my own mind. If I can come across as fitting in so another person can understand me, that's fine.

This is a very complicated question in its own way, it is something I have had to learn, and it's been a good thing to know.  Some days, as you know I am up for the fight... but on those days I'm not... it's good to just fit in and hide in plain sight. I hope that brings my point across a little more clearly.

Me:  It sure does – thank you RJ.  See this is why having conversations / sharing perspectives is so important.

Savanna:  Here are my thoughts about the post… The desire to belong is inherent in all societies across the world. To find one's group of acceptance and to be able to identify with others is a need necessary for bonding which is necessary for survival.  

To be indistinguishable (not distinguishable?) would be to be a robot programmed for the sake and purpose of others motives. It’s also dangerous as one can be easily misled and manipulated.

One would also be mediocre and levels of creativity would be nonexistent. The world needs different brains.  Where would the world be without Winston Churchill, Marilyn Monroe, Ernest Hemingway. Carl Jung Einstein, to name a few. The different brain has access to talents and creative thought that others do not.  .A world like this would not be beneficial or thriving for anyone. 

When we cover up our disability or brain differences in order to pass for acceptable we:
-Kill our spirit, our intended purpose.
-we dishonor God when we dishonor or reject the self
-we end up feeling fake, phony and become in full blown identity crisis which usually makes us feel we are mentally insane.
-This leads to burying our feelings, and numbing our confusion with addictive substances used in order to "feel normal"
-It goes against our true nature and anything we do that blocks us from our consciousness and doesn't align us with our true nature is a lie. It’s devastatingly exhausting and hard and damaging to live a lie. "You are only as sick as your secrets." I read that once.

This mask or covering up can be felt intensely by the individual themselves and it leads to confusion of authenticity. It’s stressful and unhealthy, ultimately leading to more behaviors that are dangerous to our mind, body and soul and further separating us from ourselves and isolating us from normal society.

Me: You see Savanna – this right here is why I push you and X (who prefers not to be named right now), and RJ to post your own blogs and speak out. 

Savanna – I’m paralyzed with just starting.  I wonder why I am frozen. Maybe because it means so much to me. Perfectionism too (I have trouble) getting the thoughts out of my head they are too numerous and all over the place and sentences are really hard for me.  I need someone to write my thoughts into original sentences

Me:  No Savanna you really don’t.  What you just said  - that was perfect right there.

X:  I don’t speak in public or write either because it doesn’t feel safe.  You know that whole conversation about how people would roll their eyes while they called the cops?  That is real.  That is my life.   I have enough judgment in my life – why would I want to invite more? (by writing and inviting comment / discussion)

Me:  I get it I do. At least as much as someone who doesn't LIVE with it can.  But having the conversations is the only way I can see to change it.   

RJ:  I don't feel like a leader of any sort..... I dunno..... somebody has to do it

Me:  YES – A little at a time I am going to drag you all into it!  LOL

RJ: I love the challenge  I put myself here, and while I may feel a little undeserving...

I AM going to keep going... too many people I care about are suffering 

Yes, yes they are RJ.  Thank you - Thank ALL of you for allowing me to share your thoughts and words.  Let's keep the conversation going.  I want more of us talking about this.  I want all of us - all of everyone talking about it.  

Perspectives

Image is a staircase perspective by Luciano Testoni taken from wikipedia

I am so very grateful to have met so many adults in the FASD community and for how openly they share their perspectives.  I was chatting with R.J. Formanek about fitting in vs standing out.   I get pretty passionate about respecting neurodiversity and not forcing people into molds.   R.J. reminded me that “sometimes remaining invisible is a good way to avoid things. Bad things, such as stigma and judgement”  He goes on to say that being invisible “can also cut you off from good things like sharing and love.”  R.J. told me “In the end, I enjoy having the ability to either fit in, or stand out. Not many people are lucky enough to have that 'ability'.”

Looking at Little Man’s ability to “pass” as neurotypical in some environments as a strength seems completely foreign to me but I respect R.J. and the other adults I have connected with so I need to really spend some time with this perspective.  I value these folks not only for the window they give me into Little Man’s perspective but also for their combined experience and accomplishments.  These are some pretty awesome people, ones I am proud to call friends, so to dismiss their voices or perspective would be not only short sighted and rude but, well, arrogant.  (Boy looking into the face of your own ableism is not pretty)

My first impulse is to counter with how much better it would be if we could change the world so no one felt the need to cultivate invisibility or blending in as a strength, but that is just defending my perspective.  I say all the time – I can’t know what it is to be neurodiverse – I’m just not.  I’m about as neruodamntypical as you get.  So if I can’t know the other perspective without asking – well then I need to really listen when I hear it right?

I want to chat about this more, with R.J. and with others, neruodiverse and neurotypical.   I really do believe the ability to enjoy or appreciate standing out and being unique comes from seeing difference being valued by others. If kids / people do not see others in their lives (especially people in “authority” like teachers, parents, other popular figures) value their differences then where will they learn it from? What upset me in my son’s IEP meeting was definitely not simply that someone commented that my son has the ability to "blend" but the feeling I got that it was expected he should - that not blending was not ok.  I don't want him internalizing that message. I don’t think it is healthy.  I want him to feel valued and appreciated just as much when he doesn't blend in as when he does - so he can feel good about making either choice for himself. Does that make sense?

But, clearly, I have some work still to do on me.  It may just be my bias – my perspective - that the need to value difference is so very important that made me read more into a comment than was really there.  That belief is so strong for me I was ready to gloss over R.J.’s words without really spending some time with them at first and that is not ok.  Besides - respecting my son, the person he is, means someday respecting if he chooses to “pass”.  After all that would be HIS choice to make right?

Non Speaking

I'm having trouble composing my own words right now so I thought I'd share with you a few things I am reading.  These are primarily from the adult Autistic community.  I long for the day when more of our adult FASD community speak out as freely and prolifically.  We so desperately need their voices.  I really believe it is the voices from within the Autistic community that has finally begun to turn the conversation from how to fix or force those who are neurologically different into the neurotypical mold.  Having the adults from our community add their voices would be a powerful thing.

Radical Neurodivergence Speaking

We Are Like Your Child

Just Stimming

Outrunning the Storm


Ann is one adult on both spectrums that blogs - Check her out for sure.

Living With FASD

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.

Still Cogitating

Sorry guys.  I haven’t moved on from yesterday yet.  I am still obsessing over the teachers comment about how wwell Little Man "blends in"  and why it’s so important for a person to "fit in" versus "stand out".

I think of my father as I type this as much as I do my son.  My dad was a man that learned with his hands.  He scraped through his high school education, not because he wasn't smart enough to excel at learning, but because he could not stand to sit confined to a desk while he did.  My dad built his own computer back when computers were not yet commercially available,  set up a local area network in our home in the late 1970’s around the time LANs were first popping up in industry, and taught himself how to do both by working actively with his hands.  He learned to program in multiple computer languages simply by sitting down and trying to do it.  At one point my Dad maintained global time synchronization in several wireless networks via satellite for a large multinational bank.   He had a dedicated phone line in our house that was for the computer in his bedroom.  He was on call 24/7 if there was an issue.   I know that the technology I am talking about is very “old school” for today but it was quite advanced for the time.  This is a man that never went to college, he barely graduated high school in fact.  Today he couldn’t even get an interview at most companies that do the kind of work he did.  His education pattern didn’t fit the standard mold.   Sometimes it feels as if we have completely lost sight of the words of Antoine de Saint-Expery   “He who is different from me does not impoverish me - he enriches me.”

It feels to me our culture is getting more and more narrow minded.  We have set up systems of education, of employment, of everything really, to favor one set of characteristics over all others.  We all lose something under this system, even those who have the “favored” characteristics.  We lose the richness that comes from diverse thought and different life experiences.  We straight jacket what it means to be “successful” and then we steadily restrict what paths one can take to that goal.   Everyone has to fit into their pre-slotted box.   I wonder how in a country founded on the idea of freedom we have so completely forgotten that “The smart way to keep people passive and obedient is to strictly limit the spectrum of acceptable opinion, but allow very lively debate within that spectrum....” Noam Chomsky  

Instead of working to cultivate diversity of thought and experience our culture works actively to whittle down any parts of a person that don’t fit; most often with threats of physical, emotional, social or mental harm, but sometimes with actual harm inflicted. 

Last Friday a teacher heard some commotion in the boys’ restroom at Little Man’s school and when she went in she found another student choking Little Man.  The school is reacting appropriately.  I am by no means trying to slam them by sharing this.  (People who read here will know from past posts I am more than happy to call them out if need be.)  In this case, the new administration at the school is all over it but it takes time to change a culture.  Not just the school culture but our overall culture.  “Culture will not change just because we desire to change it. Culture only changes when the structures supporting it are  transformed – the culture reflects the realities of people living and working side by side every day.”  - (with apologies to Frances Hesselbein)   And this is why I am still fussing over that one little phrase.  Because in the end it is not little.  It is everything.  

Tripping Over My Words

My son’s IEP meeting was a couple of weeks ago and of all the things to zoom in on a single phrase from the Student's Strengths section is still dogging me.  For the most part our IEP meeting went very well.  I feel like we have appropriate expectations set in his goals.  There is good documentation of the accommodations and assistive technology he needs.  (We could use more specific interim objectives in place but we are getting there with that as well)  I followed my usual cookies and combat boots philosophy and only needed the cookies.  So all in all I should be ready to call it a win and move on but my mind keeps coming back to those six words. 

“Little Man blends in pretty well”

This is what Mr. X put in for my son’s strength in the present level of performance section.  He blends in pretty well.  It seems like such an innocuous phrase but in truth it is the only truly toxic thing in the whole 34 pages.  It's probably the most toxic thing he will run up against in his whole life.  Mr. X would be astonished to read that I am sure.  Maybe some of you are as well.  Mr. X, all my son’s teachers, like him.  One of Little Man’s strengths is that he is pretty darn charming and as long as you are respectful of his few quirks, a very laid back, “easy” child as well.  I can almost SEE Mr. X’s baffled expression were I to tell him how that single comment has been gnawing away at my brain and my heart for weeks.  And that is the only reason I have not said something about it.  Yet.  I just don’t know if I can find a way to say what is bothering me so that he (and the rest of the team) will see how corrosive it is versus just seeing me as a total whack job.

Those six words are the embodiment of a whole mindset that is perilously dangerous for my son.  They list as his strength the ability to “pass” for normal, to suppress what and who he is and seem, at a superficial level, like a standard issue individual.    This is corrosive to his well-being, to his soul, in so many ways that it’s almost impossible as I get deeper into this post to even write what I mean in a reasonable coherent fashion.  I can’t imagine trying to speak my way through it without coming across as a wildly emotional irrational mom, someone easily dismissed and unheeded.  But in many ways – this single issue is the foundation of my son’s well-being for all of his life.

Some folks would understand better why it upset me if the school had set “blending in” or “passing” as a specific goal.  Any one in a minority or marginalized group would instantly get what I am saying.  Setting the goal to seem “not disabled” would more clearly lay out the subtle message “being different / disabled is not ok - only being the same as everyone else is.”    One of the first things I ever read about how dangerous this is for folks like my son is still one of the best.  I wrote about it here.

But sadly even as a stated rather than implied goal would still leave a lot of people wondering what in the world I am going on and on about.  And I just can’t seem to find the words to explain.    I can't let it go either.  I just can't so I just keep chewing on it, on how to explain so people can hear.