The Most Important Part

I was beyond privileged to participate in the Anishinabek G7 FASD conference last week in Sault Ste. Marie, Canada.  The conference was hands down the most positive experience I have had since starting my journey with FASD.  There was no sleight of hand or Pollyanna-ish glossing over the difficult realities that surround those affected by prenatal alcohol exposure but there was a pervasive faith in the ability of all those affected to rise above the challenges and a focus on what was needed to make that possible I have never seen at any other event.

The shining stars of the event were those that live with FASD every day.  To RJ Formanek, James Gideon, Savanna Pietrantionio, Tanya Northcott, Amy Shawanda, Julian Assinewai, Matt Sinclair, Myles Himmelreich, and Daniel Cutknife, Thank you – thank you so much for being willing to share your lives and experiences with all of us.  Your stories moved me to tears – more than once.  In fact by the second day I had given up on mascara entirely.  Never doubt the power of your words to make a difference in the world.

I participated in the conference as speaker as well as an attendee and the sessions I led were new for me.  When participating in events like this I usually confine my topics to factual information – things like specifics about FASD  prevalence, primary and secondary characteristics, the connection between brain function and behavioral symptoms, and sensory issues.  I use lots of power point slides of brain images and research studies to make points.  This time I chose to simply talk with the participants, to ask them to engage with me in imagining a world where seeing, hearing feeling things differently from one another didn’t make one of us right and the other wrong but both of us just another facet of the human experience.  I asked them to step outside the box with me, and with all of our neuro diverse brethren and just be – without needing to delineate the differences between us. 

It was very scary for me.  First of all because I am hopelessly neuro typical and I LIKE my box.  I find it very cozy.  Also because I am used to relying on my slides and facts to keep me insulated from connecting with strangers.  I am not comfortable in a large room of folks I don’t know.  So having a formal “role” with the appropriate props helps me manage that.  I believe all humans have our own strategies we use to buffer us from the parts of the world we are less comfortable with.   Putting aside my buffer felt important when I was talking about how we expect – even demand - that those who are neuro diverse conform to the boxes that make us neuro typical types comfortable.  We often describe people who are neuro diverse (be it FASD or ASD or other forms) as rigid, inflexible in their thinking, perseverative  in their habits etc. which makes it funny (sad funny not genuinely amusing) how rigid, inflexible and insistent we neuro typicals are in trying to force those that think differently into doing things the neuro typical way.

I try very, very hard to live outside my comfy box with my son every day.  Allowing him the “room” he needs to thrive without constantly bruising himself against walls that I may prefer – but do not NEED to be present in the same way he NEEDS them to be gone.  I fail often, imposing expectations that are completely irrelevant simply because they are “usual”.  Thankfully he continues to bloom in spite of my bungling.   For me the most important part of the conference was the words of one of the attendees on the fetal alcohol spectrum about my session: 

“I really need to hear your presentation again. Mesmerizing. I’ve never experienced that acceptance before. Your words are words I need to hear over and over until one day I believe it!!!”

No matter how often I fail - I cannot ever stop trying to speak and live acceptance every single day – because I want my son to know – without doubt – with no need for convincing – how wonderful he is just as he is.  Thank you to the conference organizers and all of the participants for reminding me what is most important about this journey we are all on.  

Little Moments

Watching my son write  "I love you" in the frost on my car window makes up for all the rough starts we have had or ever will have.  

The Hardest Part

I was asked recently, “What is the hardest part of parenting a child affected by FASD ?”  I was rather stumped by how to answer the question.  Should I say – it’s all hard?  Because it is.   That makes it sound like it is only hard and nothing could be further from the truth.  I find great joy in parenting Little Man but there are certainly hard parts.   Besides it feels like a brush off and really it does nothing to help people understand.  So then, what do I say?  What is the hardest part?

I could talk about the sleep issues.  It’s been 7 years since I’ve been able to count on stringing two decent night’s sleep in a row.    It is better now than it has been in the past.  I can remember a time when I was lucky to get 2 hours sleep a night.  You don’t really “function” on that little sleep – in fact I can’t say you even really survive – more just exist.  It was brutal.  Even though it is better than that now it can still be very hard.  But is it the hardest?

Or is the hardest part feeling like you have to be on your toes with an eagle eye out for every possible thing that may happen next – so you have a plan for addressing it – for smoothing the way- the unrelenting  vigilance you need to maintain that feels almost like being in combat zone? 

Is it the million and one appointments, details, schedule adjustments, medications, therapies, preferences, and accommodation strategies, you need to carry in your head?

Is it the judgment you come across in the teachers, administrators,’ doctors, therapists, family, friends and even random strangers in public places?  How dare she let him get away with that kind of behavior?  What is wrong with parents these days?  I would sort that out in a weeks’ time let me tell you.   

Is it that there is no “expert” to turn to in the field that knows just how to resolve your child’s issues?  That in addition to no experts there are rarely even people more than passingly familiar.  That every place you go you have to be the one to educate.  And that in many places even though the person you are dealing with is totally uninformed your knowledge, experience,  and input will be immediately discounted because YOU are not considered an expert – you are “just a mom.”  So you have to act as if you are completely certain – so that people will listen, and even consider just a little what you are advocating, all the while you are desperately uncertain and wishing there was some certainty, somewhere you could find to answer your own questions.  Is this really what is best for him?  How do I help him the most in the long run? 

Is it the endless debate you hold with yourself and the world about to medicate or not?  There are worlds of words I could write on that alone. 

Is it the outbursts of violent behavior that happen?  Is it worst when they are nearly constant rages or when they are sudden and unpredictable storms that come out of nowhere?

Is it the medical emergencies,  the constant noise,  the  co morbid psychiatric issues, the stress, the depression, the tension on other relationships?

I think the answer is that the hardest part is the part you are struggling in right now whatever part that may be.  The hardest part changes from person to person and for any one person from day to day struggle to struggle.    We had a rough morning Little Man and I.  I was overtired and I did not cope well.  I left him at school feeling wretched.  Like I’d started both our days off on a horrible note.

Today for me, the hardest part is feeling like I’ve failed him and not for the first or last time.  The hardest part is knowing that at its very worst for me – all of this is still easier than it is for him; that while I have one small person to deal with whose mind and reactions and impulses are not intuitive to me, the whole world is foreign to him.  I deal with one small fraction of what he copes with all day, every day.  For him the entire world is too fast, too loud, too abstract, too arbitrary and too rigid.  The hardest thing is listening to him cry because “Nobody doesn’t like me.  I must just be bad all the time.”  The confusion and alienation and pain he suffers.  For me, for today - That’ I’d say is the hardest part.

Now is Not Forever and Never is a Load of Crap

I’ve been pretty busy working and “mom-ing” and just living lately (especially since school has let out) so I have not been doing much writing here recently but then I read this and this*  and this* too and  I felt like I needed to get back to writing.

So I’m trying to carve out some space to do that.  It won’t be as much as I want because all the working and the “mom-ing” and the living never stop (nor would I want them to) but this stuff – this "oh yeah we need to be speaking out – we need to be creating the future world we want for our children" - can’t stop either.  So I promise I am going to try to do better.  In the mean time go read what they wrote.  Its important. 

Its so easy to get lost in the "cants" and think they mean "never will be able to".  If I stop myself and look back though - even at 8 - even at 8 that is way behind typical 8 year olds - Little Man has already done so many things I thought he never would.  There was a time when I was sure he would never speak, and then, when he proved me wrong, that he would never speak more than one word at a time.  Now I have reached that blessed place where sometimes I wish he would just STOP talking for a few minutes.  Seriously - I am grateful for that.  (Not always in the moment of course)

I've been so worried as last school year drew to a close about him moving into third grade - in our district 3rd through 5th grade is in another building.  So he will go from being with kids who are 4- 8 years old to those that are 8- 10.  Emotionally and socially he is more similar to the 4 and 5 year olds than the 8 - 10 crowd.  To try and deal with MY stress about this (and that's what it is - mine - he doesn't appear concerned at all)  I've chosen not to really spend time on academics with him this summer.  We usually do some kind of summer program and sure we  could spend the summer trying to make sure he knows his math facts or pumping up his reading level but I'd rather spend it thinking about how he can be happy and secure.  Because his mind - his amazing, fascinating, busy brain is always, always learning.  When I can manage to take that mental half step to the side and look outside the conditioning and "things I already know" sometimes I manage to see things the way he does.  And I have to tell you - it is beautiful.  So I'm going to add my "have faith" to the far better written ones I linked to above.  Let's allow everyone to unfold their abilities in their own time.  

The world seems to push so hard at conformity of thought these days at least where we live.  I know to some it doesn't seem that way.  Each social change and advancement in acceptance of the rights of others seems to create a backlash of anger at those who are different at least for awhile.  So it is even more important that we keep looking for ways to push at the world gently to make space for and to appreciate neurodivergance.  Little Man and I are working mostly on making sure HE knows difference is just fine and his way of thinking and being is just as valid as someone else's and that the world is better off for having both.  We are reading a lot as part of this.  Two of our current favorites are Is There Really a Human Race? by Jamie Lee Curtis and Laura Cornell and The North Star by Peter H. Reynolds.**  Both are good books to start talking with little ones about people all being different and appreciating those differences.  I will say they can be a little too figurative for those that are very literal minded like Little Man.  So we read them together just as they are but I also interpret them in a more literal way when I read them aloud and we look at the pictures together.  And we talk about them.  A lot.  And he enjoys doing that.

I get caught up in wanting to change the world sometimes but its just as important being there for Little Man, helping him make sense of his world and himself.   Where he is now is not forever and saying "he will never" is a load of crap.  Where he is now is awesome.  We have "forever" to get where he is going.  And we can enjoy the whole journey.  

* I have to give credit for the title of this post to and thank Jess at  a Diary of a Mom for bringing the items I linked to my attention.  Seriously if you are looking for one place to read I always recommend Jess.

**  Peter is unbelievably awesome.  I wrote an online review of one of his other books that Little Man was having a hard time relating to and Peter actually took the time to reply to me and offer to set up a skype session to read and talk about the book.  I was blown away.  What an amazing person.  

I can't wait for more

I've posted a new link on the Useful Links tab.  The blog Blank Pages by Kesha Michaud is now there under Information by Adults Living with FASD.  Although Kesha has just started her blog I am blown away by her first entry of a more personal nature "Is that a Friend?"

Kesha explores so clearly the issues and problems that she has experienced in making and maintaining friendships.  Her writing is clear, painfully honest and very brave.  I can't wait to read more and I hope any one who reads here will too.

The voices of those with FASD are so often marginalized.  It makes my heart soar to hear hers ringing out clear.

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.