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.  

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.

Half a Box of Tissues and Many Swear Words Later

This was not the post I had intended next.  I thought maybe something light and cheery was in order.  You know balance the challenges and the gifts but while life usually tips far, far into the range of things to be grateful for it doesn’t always.

Have I ever mentioned the little clutch of fear I get whenever my phone rings and it is the school’s number?  Usually it is unfounded but not today.  Today it is the school guidance counselor. Little Man is being bullied at school.  I start crying again the minute I type those words so I guess I am not as sniveled out as I thought.  I have always known he would face unkindness someday.  But knowing a thing and living the thing are, well, two separate things entirely.  I am both heartbroken and ragingly angry for him.  A part of me cannot understand WHY?  He is such a sweet and loving kid.  He has differences yes but he is unfailingly kind to others.  WHY must someone hurt him, emotionally and now physically?  What purpose does that serve?  To the person or to the grand scheme of things at large?

The news is full of people who hurt those who are different.  There is this horrifying story and this, and – well I could go on – and on - and on - except really, I can’t.  I just can’t.  I can’t read any more.  I can’t face any more of it. Thank God Little Man has not faced anything that traumatic.  Yet.  And there's the worst part.  He could.  Someday he may.  Because I cannot stop it.  that's what I have to face right now in this moment.  No matter how I try I cannot always be there to protect him.  And if you know me, you know that I will have to DO something in response to this incident even though I know that reality.  The only real question for me is what to do beyond cry and curse?  Punching out a second grader is not really a viable option (and the tiny shred of rational me available in this moment knows in the long run it would not help.) 

I talk about being the change you want to see in the world, and this is one of those places where the rubber meets the road.  To lash out and cause more pain and anger and maybe shame would be easy to do but it would not move us toward what I really and passionately believe is the only answer; understanding, empathy, and celebration of what makes us each unique. 

I call the school back. I know – and really believe – that all the members of his team really truly care about Little Man and his emotional as well as physical well-being.   I know they have their procedures and that the “offending party” will be “subject to appropriate discipline.”  But could we look at something else too?  Please?  Can we look at the diversity programs they already implement and add on to them?  They focus on things we can see; skin color, family differences, mobility impairment.  Can we go deeper still?  All of us have differences – and many, many of them are invisible, like Little Man’s neurological differences.   There are children throughout the school with invisible differences.  ADD/ADHD. Diabetes.  Autism. Mental Health issues.   Some in special programs and some not.  Can we address everyone about the importance and value in ALL differences, even those you cannot see on the outside?  Does a program like that even exist?  If it does, I’ll pay for it.  If it doesn’t I’ll help create it. 

Because, Because, well that’s obvious right?  I know this is not a problem I can fix but I have to do SOMETHING!  I am trying to live up to the words of a very wise friend - who is also affected by FASD.  "The question, he says, "is always what would LOVE do?"

My Outrage is Showing

As September 9^th, International FASD Awareness day approaches it becomes ever clearer to me how  really really over Prevention I am.  I know I’ve written about this very recently here but at the risk of being boringly repetitive I just have to talk about it again.  I hope you will bear with me.  This is important. 

The items in my news feed about FASD are slowly becoming more prevalent with the 9^th getting nearer.  Previously any increase in visibility would thrill me.   I am more aware now that over and over the messages are not just overwhelmingly prevention based – they are exclusively prevention based.  That exclusivity has got to end.  I talked in my previous post about how I think it is ineffective.  What I want to talk about here is how damaging and dangerous it is.  I’m not saying that trying to keep additional people from suffering from a disability is in and of itself a problem, but when it becomes the sole focus of public discussion of an issue like FASD I believe it starts us on a road to some very unpleasant places.

Prevention only messages devalue the millions of people currently living with FASD.  It says they are not worth help and support.  They are the throw away mistakes that we will simply prevent in a better future.  Don’t agree?  Think I am exaggerating?  As George Santayana said,  “Those who cannot remember the past are condemned to repeat it.”  How many people are aware of the history of Eugenics in the USA?  Do you know that ads deriding the “Feeble Minded” and “Defective” as a burden on our society that should be removed by abortion and forced sterilization were widely supported less than 100 years ago?  Even the euthanization of people already born was widely proposed as a public policy!!  Laws promoting eugenic policy were passed in 30 of 50 states.

Well that was then correct? It was all far too long ago for us to concern ourselves with now surely?  Except it is NOT.   The U.S. Supreme Court ruled in 1927 that the state of Virginia could sterilize those it thought unfit legitimizing eugenics at a national level.  Although compulsory sterilization is now widely considered an abuse of human rights, Buck v. Bell was never overturned, and Virginia did not repeal its sterilization law until 1974. Getting quite a bit closer to now, eh?  Still not convinced?  How about the TIME article that ran in July 2013 reporting 148 sterilizations between 2006 and 2010 in California without the informed consent of the women involved?  Close enough for you yet?

It really is only a short and slippery path from devaluing an entire population as mistakes and burdens that should be prevented from existing to the conclusion that they should be eliminated in other ways as well.  We like to congratulate ourselves on how progressive we are, how enlightened in our human rights recognition.  Our rhetoric and focus around FASD says otherwise.   It really does.  In fact the forced sterilizations among the Native American populations in the 1970’s were driven in a large part by the high rates of FASD within that population.  It would do us good to remember that the horror of the Nazi Holocaust was born out of the American Eugenics movement.

This is why until the dynamic of public conversations around FASD shift to a balance between education on cause and ability to prevent it and how to help and support those already affected, I am done with Prevention.  There are enough voices on that topic already.  

Going For It

I've been wrangling a post around and around in my head practically since I (re)started blogging.  I have not been able to get it quite right and so I keep churning and not blogging.  It finally came to me (yes I am slow sometimes) that it is more important to be talking about this than it is to have the single perfect post on it.  (if such a thing were even possible) So here are my current thoughts – miss mashed as they are – to get started.  I expect I’ll revisit it a lot.

We as a society appear really, even monumentally, bad at respecting neuro cognitive diversity to me.  (I’m not even going to get into diversity in general – my brain totally spins out of control if I try to tackle something that large).  This is not a holier-than-thou rant.  I include myself in that assessment completely.  I've already called myself out on it publicly here once but I catch myself in it constantly.

One of the examples I am mulling most recently is The Arc campaign “A Life Like Yours.”  I need to say first that I applaud their intent to make the public aware of the lack of basic rights for those that are "different" and I totally support the campaign for additional SS waivers and more services / supports to make non institutional living more accessible.  What troubles me is subtle.  Both the assumption that all people want "A Life Like Yours" and the suggestion that to be equal the lives of those who are different need to be the same as everyone else's assume the superiority of the "normal".    i.e. the slogan for the campaign both separates us into two groups "us" and "them" and posits that “their” life both should look like “ours”.   I'm left wondering but what if they do not want "A Life Like Yours"?

Beyond the catch phrase the Arc does say “This is a human rights issue that unites us as one. It far surpasses color, race, religion or even social status. "  I love that part.  When I asked the adult FASD community what we should "call them"  I met with ... crickets.  (As I should have) And then one kind soul responded saying "I call us people."  I was humbled.  He was right.  what we may see as their differences ARE NORMAL for them.  So I love that this is being addressed as a human rights issue - not a "disability issue."  But I wish there were away to discuss this and promote the need for equality of opportunity, and the equal value of all persons, without the implied or outright stated message that everyone’s life must look the same to be of equal value/validity.  

I believe all people matter.  I passionately believe that this is a fundamental issue for our country. (and the world but hell who am I to be trying to take on the world)   “We hold these truths to be self-evident, that all men are created equal…”  Our very foundations as a nation are based on just this issue and yes civil rights groups are actively pursuing the rights of the neuro cognitively diverse.  However, we all continue to define people who are different as people who are dis-abled.  Disabled fundamentally means “limited in movements, senses, or activities in some manner” and this definition does not include limited by WHAT.  Looking at that – aren't we all disabled at some time for various reasons?  Disabled does not have to imply deficient or not having / being enough.  And yet, if you were to apply the word “disabled” to someone who does not consider themselves to be, they would protest, probably quite strenuously.  Disabled does not have to imply deficient or not having / being enough but in practice it almost always does. 

This is important to me personally  because my child and my brother are going to face discrimination due to their FASD all their lives.  With where they fall on the spectrum they will be judged both "not normal"  and sadly also "not disabled enough."  With an estimated 15% of the population of the US having some sort of disability the chances are good that most people know or love someone with some kind of "disability".  Even those that do know or love some one affected personally should care.  As Martin Niemoller said:

When the Nazis came for the communists,
I remained silent;
I was not a communist.

When they locked up the social democrats,
I remained silent;
I was not a social democrat.

When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.

When they came for the Jews,
I remained silent;
I wasn't a Jew.

When they came for me,
there was no one left to speak out.

Equal rights for all matters.  I will be honest - I don’t know how we change the subtle (and not so subtle)  pervasive denigration of neuro cognitive difference.  I wish I had a solution I could trumpet from on high. (I do so love the moral high ground - its a failing of mine.)  I still wrestle daily with my own personal bias, trying to see the world from my son's  and brother's view and then struggling to accept that as every bit as valid as mine.  Some times I succeed sometimes I fail.  One thing I am sure of  if we are not talking about this topic, examining it, working on it,  then there’s no way we will change it.  

He's not a Fixer Upper

This isn't strictly speaking a “new” post since I've already shared some of these thoughts on Facebook and cribbed others from an extremely talented writer you should really check out.  I have her permission to share them and her approval on the few alternations I made, but even though she focuses on Autism not FASD you should still check her out.  There are enough similarities between FASD and ASD that her thoughts and posts are always extremely relevant, in addition to being lyrical and uplifting in a way I cannot manage to be.  I’m angry and snarky and fight off my fears with a bitter kind of humor.  It’s what works for me.  We all have to find our own way.

This particular post isn't going to be funny or snarky either though.  Just raw and I hope real.  First the part I want to share from Jess’s blog:

My child is not typical.

Trying to force him to be something that he’s not doesn't work. 

Let’s play a game, shall we? You, reading this, you need to have FASD now.

What?  But you don't have FASD?

Don’t worry; we’ll show you how. We’re going to give you therapy to give you FASD.

But I don’t have FASD.

Not really relevant.

But ..

We’re going to teach you to ACT like you have FASD.

ALL

THE

TIME

But ..That’s not who I am.

Yeah, we know, but you’re going to have to get used to it.

But it’s NOT…WHO....I....AM.

No, it’s not and it hurts to be told that who you are is not okay. That how you experience the world is .. wrong. That how you act is … wrong. That how you feel, think, express excitement, show fear, communicate joy, share sadness, and, and, and .. are wrong.

It is a life of No.

It is an environment of negative, toxic energy.

No. No. No.

Here have a gummy bear for not being you, a sticker on a chart for acting like something you’re not.

It is exhausting. It doesn't work. We cannot be who we aren't.

Even if we can pretend well enough to convince the panel of judges.

Pretending to be someone you aren't isn't a life.

It hurts.

And it hurts no one more than him.

I will not strive for normalcy for my son. It’s an asinine and dangerous goal.

Low self-esteem. Depression. Alcoholism. Drug abuse. Suicide.

No.

My son is not ordinary. He is not typical. He is not a standard-issue human. He is unique. He is himself.

I will do everything I can to arm him with the tools that he needs to get by in a world that doesn't fit. I will teach him what will be expected of him in every situation I can think to include.
And I will tell him, by word and by deed, that his quest is not to make others comfortable, but to find the space in which both he and others can be as comfortable as possible, together. That it is not a one-way street. That he has every right to say, in his way, the fact that I don’t fit the mold doesn’t mean that I’m the wrong shape. It means that we need a more flexible mold.

I once believed that normalcy was our goal. No more.

When I read this on Jess’s blog it made me cry.  And rage.  And cry some more.  This is what my son and all the others who have neuro cognitive differences deal with every.damn.day.    I saw something posted by a very wise adult with FASD recently that was saying essentially the same thing.  I don’t have his permission to post his words right now so I am not.  But I hope he will allow me to link to them or quote him after we have had a chance to talk. 

What scares me into my bitter tirades and snarky humor is, as a parent, how do you find your way?   How do you balance arming your children with tools to survive in an unkind and inflexible world with allowing them to just be their awesome selves?  Because my son IS awesome.  He is not “awesome in spite of his disability” he is just flat out awesome.    And I don’t want to change that. 

Everything does not have to be a fight

I was reading comments on this article about Autism and people were getting into a tizzy regarding comments about the misdiagnosis of children with FASD as autistic.   

I really don't understand why.  Autism Spectrum Disorder (ASD) and Fetal Alcohol Spectrum Disorder (FASD) are similar in several symptoms and may be mistaken for one another.  They are not, however, the same.  In general, it is more socially acceptable to diagnose ASD than FASD because there is no definitive known cause for ASD and therefore doctors can avoid the blame / shame problem associated with FASD.  The problem with this is that while some treatment protocols / therapies for ASD are helpful to children with FASD, many are not.  So misdiagnosing leads to less than optimal treatment of children who have FASD and inclusion of FASD children in studies of treatments to help ASD cloud the results.  We need to remove the stigma from FASD so that children with each disorder may be properly diagnosed and treated in ways that maximize their potential.  

The comment that some children diagnosed with ASD really have FASD (or perhaps have BOTH) is not aimed at dismissing the seriousness of ASD in our country today.  Nor does it deny the importance of ASD research and treatment. 

The same problems happens with ADHD (attention deficit hyperactivity disorder), ODD (oppositional defiant disorder), SPD (sensory processing disorder) and a whole host of others.  Children with FASD may exhibit symptoms that look like any one of these.  Again - that does not dismiss those disorders nor minimize their prevelance.  But misdiagnosing children with any of these leads to less than optimal help for the children and contaminates study results on the effectiveness for treatments for the disorder while preventing an opportunity for study of effective treatment for FASD.

Unless I am missing something the only controversy here is people getting offended that you might be saying their child's problems were caused by their behavior.  Um - doesn't that kind of prove my point?  Until we remove the blame and stigma from an FASD diagnosis people are going to try and avoid that "label" and slap on a more socially acceptable, but incorrect, one.