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.

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!!!

AWESOME NEWS!!

I've buried the lead so - your going to have to read all the way to the end to get the good news!

Image is a Charles Schulz Peanuts cartoon 

altered by me so that the characters are wearing red shoes.

Anyone that knows us knows why FASD is so important to our family.  We knew Little Man had FASD when we adopted him, in many ways that made us “lucky.”  We were able to bypass the many years and many, many specialists most people have to slog through to get an answer that made sense.  What we still faced – and face each and every day - is that almost NO ONE knows about FASD.  That makes me ANGRY and SAD and just about drives me CRAZY.  FASD - is nothing new, nothing mysterious, and most assuredly nothing uncommon. The CDC may estimate FASD at 1% of the population but the DSM V says about 2-5% of the population is affected and some studies put it at closer to 12%. That means AT LEAST 80,000 babies each year are born with it in the U.S. and it is probably closer to 200,000.

So WHY doesn't everyone at least know what it is?  Why don't we all know more a lot more than that about it? Why is there no research on what prevents the poor outcomes people affected often suffer in life? Why don't we have support systems in place for them? Why don't we have specialized health care providers for them like we do for other disabilities?  Why is there nowhere in the US you could even get a degree (no less an advanced degree) specializing in FASD?

Just looking at a few statistics about people with disabilities supported by our government you would see the following:

Category                                   % of Population                         % of funding

Musculoskeletal disorders                     13%                                         32%

Blindness                                              2.3%                                         2%

Deafness                                              2.1%                                         2%

And then there is FASD.  It is not even considered a disability.  If the person affected has an IQ below 70 they may be able to qualify as intellectually disabled.  But people who are deaf, or blind, or mobility impaired do not have to prove any intellectual impairment to have their challenges recognized and supported, only those with FASD.  Comparing it with autism for a moment - 1.5% of the population is considered on the autism spectrum.  3% of government monies are spent on support for those people and there is no requirement for them to show intellectual impairment for diagnosis or support. 

I am not by any means suggesting that autism, or blindness, or deafness, or mobility impairment are unimportant.  I am only contrasting them with how consistently unknown and  unsupported FASD is.  So what is the reason for such persistent discrimination?  I believe that it is in a large part because public messages and education about FASD are universally about prevention.  The mission of the ONLY large national organization focused on it is (and has always been) prevention.  Of the 30,000+ published articles on FASD fewer than 10 focus on how to help people with it.   No one is looking at the people already affected – they are the throw-aways, the “it’s too late let’s move onto to stop the next generation” and that attitude, that stigma of being the “unhelpable” becomes self-perpetuating. 

This prevention only focus is why everywhere our family goes we first have to convince people that Little Man CAN succeed, that he’s worth the effort, and then go on to teach them about what he needs in order to do so.  But even before that, we had to educate ourselves. Because just knowing a diagnosis doesn't really help you understand what FASD is and how to help your child (or brother, or sister, or parent, or husband, or wife, or employee, or client.) Nope. A diagnosis is just a diagnosis. And resources to learn about FASD, even if you are a highly motivated caregiver for someone affected, are few and far between. 


Anyone who knows me knows that I can't just let things go.  I always have to have a plan.  I got truly lucky when I met Adrienne Elhart Bashista.  She was already hard at work setting up a nonprofit to operate nationally spreading the kind of training and awareness we really need to help those with FASD and I was thrilled to join in and help her found Families Affected by Fetal Alcohol Spectrum Disorder (FAFASD).  Parents need the training FAFASD offers, spouses and significant others need it, educators, doctors, nurses, lawyers, social workers, police and judges, counselors, employers, everyone does!!   Please visit our website at www.fafasd.org and consider making a donation to help us reach more people!!  

And at last - here is the good news - WE ARE OFFICIALLY 501c3 RECOGNIZED!!!  We just got the letter from the IRS.  This means any thing you give is 100% tax deductible and we can now apply for grants and sponsorships!