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.  

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.  

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.  

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!    

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?"

HAPPY International FASD Awareness Day!

Happy?!? You say?  Yes HAPPY.  Look at any writing on happiness and you will find some version of psychologist Mihaly Csikszentmihalyi’s words, "It is by being fully involved with every detail of our lives, whether good or bad, that we find happiness, not by trying to look for it directly."   Or the words of author Jerry Spinelli “Live today. Not yesterday. Not tomorrow. Just today. Inhabit your moments. Don’t rent them out to tomorrow. Do you know what you’re doing when you spend a moment wondering how things are going to turn out?  You’re cheating yourself out of today. Today is calling to you, trying to get your attention, but you’re stuck on tomorrow, and today trickles away like water down a drain. You wake up the next morning and that today you wasted is gone forever. It’s now yesterday. Some of those moments may have had wonderful things in store for you, but now you’ll never know.” 

Happiness, when studied at any length is almost always found to be caused by a life spent IN THE MOMENT.  This is one of the gifts of Fetal Alcohol Spectrum Disorders.  Yes, I said GIFTS.   The same neural changes that cause many of the difficulties of life with FASD also help folks affected live in the moment.  And that IS a gift.  They have tremendous capacity for joy “not in another place but this place...not for another hour, but this hour.”*  We seem to spend days and weeks and months and years talking about the challenges of FASD.  But FASD is more than those challenges.  Because FASD IS PEOPLE.  It is the people whose neurological make up is shaped by prenatal alcohol exposure and it is all the people whose lives they touch; the mothers and fathers, sisters and brothers, friends, lovers, husbands and wives, employees, employers and coworkers.  And while we spend so much time and energy looking at the pain and problems involved in a life touched by FASD we rarely spend time on the happiness.  So today on FASD Awareness day – I choose to look at not pain but JOY, not challenges but GIFTS. 

When I watch my son lose himself completely in a simple activity like dancing in the bubbles and I hear his unrestrained giggles and I am reminded of the words of Henry David Thoreau “You must live in the present, launch yourself on every wave, find your eternity in each moment….there is no other life but this.”   My boy brings that same capacity for joy to each and every thing that he does.  He can let go of the past, no matter how fraught with fear or anger it may have been, in an instant.  He does not fret and worry over the future.  At 7 he already knows,  “The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”** 

I am and will be forever grateful to my son for the way he constantly widens my understanding of life. Learning to see and experience the world as he does continues to force me to step outside my own little box, to truly look for and see the beauty of difference, and to appreciate how rich the full range of human capability is.  Little Man has enriched my life in more ways than I could ever count, including most especially, the numerous people also affected in some way by FASD he has brought us in contact with.  I am proud  of my boy beyond any any means of measuring and I thank God (and yes his birth mom) every day for blessing me with the privilege of raising him.***

*Quote by Walt Whitman

**Quote by Eleanor Roosevelt
*** This paragraph was inspired by something I read by Jess at Diary of a Mom.  I cannot remember which of her wonderful pieces it was but if it sounds kind of like her - that's no accident.  I love her writing and it often lingers in my mind.  You can find links to her work on the Useful Links tab.

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.  

What should I have said?

*** Edited to include what I cannot believe I forgot in question # 3

I was asked some interview questions recently by a grad student who will be presenting research on FASD and wanted some personal comments from a caregiver.  The questions looked really simple on paper but writing the replies to them was horribly hard, harder than I ever imagined it would be when I agreed to do it.  I'm still not happy with what I finally came up with.  I'm including the questions and my answers below.  I really want to know what you guys think I should have said - what do we need to get out there?

1.     What is would you like people to know about FASD?

FASD is a real physical disability that affects the brain.  It is no less “real” or disabling than being visually, hearing, or mobility impaired.  There was a time when people disabled in those ways were marginalized and forgotten.  I hope that eventually the kinds of accommodations people with FASD need will be as common as the wheel chair ramps and curb cutouts you see on almost every corner or in front of every building in the country or the braille on every elevator and ATM.  

FASD is not rare it’s only underdiagnosed.  There are as many cases of FASD as there are of Autism; people just don’t want to discuss it because there is a known cause.  The rates of children with FASD would be shocking if people were really upfront about it and there are equal numbers of adults already coping with it.  As a society we have to begin making the world work for them.   We are a country founded on the principle of all men being created equal.  Neurological diversity deserves as much respect as any other form of diversity.

2.     What do you want people to understand about what it’s like to live with FASD?

You know this is a question someone with FASD should be answering.  As a caregiver the best I can do is say that in my experience people give no thought to how much of what we do on auto pilot every day is only possible because of the way our neurotypical brain works.  Most of us have no idea how many separate neurological processes just happen in our brain to do the simplest most mundane things.  So I think it is impossible for us to really understand how hard, how tiring, and how utterly frustrating it is for people whose brains just don’t run the same way. 

That’s really what I wish people understood – how hard folks with FASD work to do what seems so easy to those that do not have it.  I watch my son and my brother struggle and I think really understanding how hard they work day to day, sometimes minute to minute, would make others a lot more patient and supportive, which is what folks with FASD and those who care for them really need.  There is not a lot of patience or sympathy for most folks with FASD because they don’t LOOK like they are disabled.  I wish people would understand that they struggle as much as any person with a disability you can see.

3.     Where do you get help and support from?

Honestly most of my support comes from other parents with children that have FASD.  It’s pretty rare to find professionals who are trained beyond a very superficial level in FASD and even those don’t really understand what it is to live this day in and out.  We have found a few professionals however, that were really willing to put the time in to listen to us and seek out more education on the subject.  Our son’s Occupational Therapist for example.  She has been just awesome at helping us find ways to manage his sensory challenges as well as addressing motor planning and control.

***I am ashamed to admit this is what I forgot and was nagging at me.  I cannot believe I forgot in the first place.  I have been unbelievably fortunate to connect with a group of adults who are on the Fetal alcohol Spectrum.  The assistance they have provided in understanding my son is priceless.  These folks are incredibly generous in sharing their triumphs and fearless in sharing their pain.  I am constantly in awe of them!

4.     What can professionals be doing a better job at?

For health care providers especially I would say they need to know and recognize their place in the chicken / egg loop that people affected by FASD are caught in.  (When I say affected I mean not just those exposed to alcohol prenatally but everyone in their circle of care – parents, significant others, family members FASD affects them all in some way. ) 

When FASD goes undiagnosed it is a problem not only because that one person and their circle are not getting the support and assistance they need but also because FASD continues to be under recognized at a public policy level and programs for support stay underfunded.  Not many cases reported = not much funding or attention allocated = ignorance and lack of diagnostic / support capacity = not many cases identified and on and on.  I know it is hard, especially when dealing with a birth family, to address this because of the stigma around maternal drinking and the myths and shame that surround FASD but the medical profession has taken on difficult social mores before in the name of public health and this one is desperately in need of their leadership. 

For teachers, social workers, lawyers, judges, nurses and doctors – for everyone really who interacts with people affected by FASD the two very best things they could do would be to 1) slow down and 2) really listen to those who understand FASD.  People need to realize that more time is needed to really understand this condition and the folks that live with it.  I’ll give you a personal example.  My son is dangerously under responsive to pain.  I’ve told people that over and over but either it had not really registered or the school thought I was just one of “those moms,” you know overprotective and hovering.  He had a fall on the playground in his first week at school.  He bounced back up and kept going so the folks watching just assumed he was fine.  He was not.  He had broken his nose.  When they came back into class 20 minutes later and saw the swelling and bruising they finally took him to get some ice on it but when he insisted it didn’t hurt they let him go back to class. 

It was 5 hours before I knew what had happened, during that time normal bacterial that you would find inside a nose had migrated through an internal tear in the tissue into the skin under his eye.  Within two days he had a nasty festering infection swelling up between his nose and eye.  The ENT surgeon we took him to drained the infection but did not put any kind of dressing on it, in spite of being told that my 5 year old was really more like a 2 year old and would never be able to keep his fingers away from the incision.  The infection reoccurred, only this time it was MERSA (a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections) which he had picked up on his hands by touching  just about everything he came in contact with in the hospital and then of course fooling with his incision.  The MERSA traveled into the break in the cartilage and developed into Osteomyelitis .  My son had 5 surgeries and was on antibiotics for over 6 months to clear up a problem that would have been easily dealt with if the professionals involved, at the school and the hospital, had listened and taken our concerns seriously.    

I don’t know how to emphasize it strongly enough – if you have not worked with people affected by FASD in depth please, please, please, listen to those who have; to those who care for them, and to those affected themselves.   So much of the trouble they face comes from totally preventable situations.  

Lobbying for the PITA Award

Just thought I'd share my latest letter to the legislative assistant that works for my state senator.  We're on a first name basis by now.  She hears from me almost weekly.

H-

Thanks for your fast reply.  I will be sure to send some follow up information to the snail mail address.  I understand that Senator X must be very busy.  I hope you will keep my request on file if time in his schedule does open.  I will be continuing to check in to see if there is a time available.  I am also curious to know if the Senator has plans for marking International FASD Awareness day, September 9^th.  If so I would like to know the event so I can make plans to attend.  I was very disappointed that there was no acknowledgement at all of the date for the last 2 years in our state.  My family and I traveled instead to North Carolina and Washington DC instead to attend events. 

I think it speaks loudly to the level of attention this issue receives here that not only are events like that missing but the only training courses offered in the state have been through invitations to the NC FASD coordinator or other professionals from out of state to speak.  I myself am going to Georgia this weekend to attend an event sponsored by Emory University and the CDC on a specific intervention for improving Math abilities in those affected by FASD.  I really think that we should be making this part of our state teachers requirements.  I'll send you more information after my return.

I look forward to corresponding with you again in the near future.

T.

Eventually she is going to give up and set up a meeting for me with the Senator.  I'm just that stubborn - although I prefer the term committed.  

Understanding, Support, and Accommodation First

I’m going to say something very unpopular in this post.  If you disagree feel free to tell me so but please avoid personal attacks and egregious use of inappropriate language.

I think it is time we put aside FASD prevention.

For the last 20+ years the primary focus relating to FASD has been prevention.  I’d argue that most of that effort has been unsuccessful in moving the dial on the number of alcohol exposed pregnancies per year.  A big part of that failure is probably driven by the huge cultural role of alcohol (not just here but around the world).  We have alcohol at sporting events, alcohol at celebrations, alcohol at wakes, wine at the Lord’s Supper, cocktails at fancy events, champagne to celebrate the New Year, kegs at university parties.  Tennessee Whisky, Scotch whisky, Russian Vodka, German Beer, French Wines, Japanese Sake, Peruvian Pisco - We are awash in spirits.   No matter what studies are published, what statements by scientists and the surgeon general are issued, no matter what print, radio, or broadcast ads are run more alcohol exposed children are born every year.

I’d like to see us, all of us involved, persons affected by FASD, those that love and care for them, those that work for or represent them, those that lobby on behalf of prevention groups, all of us stand up and demand that the funds that are not achieving results in prevention be redirected  into other efforts, like diagnostic services.  And not just for kids but across the life span.  Let’s detail the loss of human potential, and economic productivity.   Did you know more people are affected by FASD than by AIDs at the height of the AIDs crisis in the USA?  Where are the lapel ribbons or the movies about people fighting for FASD sufferer’s dignity, worth and civil rights?  Let’s uncover how big and pervasive this issue really is.  Let’s take those numbers and start lobbying for the same services and support that are given to those with hearing, or visual, or mobility impairment.* Let’s demand that equal moneys be spent on FASD as are currently being debated for re-authorization  earmarked toward Autism. 

Maybe once the magnitude of the problem is no longer swept under the rug and the cost of the issue is there right in everyone’s face – then the conversation about prevention might be able to have an impact.  And if not, hopefully life will be improved for the millions who are currently suffering the effects in silence. 

*I am by no means saying that folks with other disabilities have it easy or have all the support that they might need.  Only that there is much more focused on support and accommodations for those recognized physical disabilities.  I want our focus to mirror theirs.

Must See TV (ok videos really but it sounded good!)

Check out this video - hear people affected by FASD telling their own experience:

Living with FASD

Or this one with Alan Mountford and Diane Malbin talking about children with FASD and School

You Never Know Who has an Invisible Disability

Both are awesome.

Reactionary

So I saw this quote circulating today “If you focus on MANAGING someone living with Fetal Alcohol rather than trying to CHANGE them, you'll get better results. “ and almost clicked back into ranting angry mama mode.  (As you may recall I’m trying to be more positive here because I believe it’s best for me, for my son and brother, for all the folks affected by FASD and well just for the world really, right?)

 I find the statement that we should be managing folks with FASD just as wrong-headed as the idea we should be changing them.   (or focused only on preventing them from existing)

How is “being in control of”, “directing” or “commanding” (all synonyms for “manage”) really all that much better than changing a person as a goal? 

What I try to do for my son and for my brother is to love them and to really know them.  I appreciate their strengths, and I accommodate their needs.   I work to manage their environment, the expectations placed on them and my own reactions to them.  What our society ought to be focusing on for all people affected by FASD is essentially the same.

We do not seek to “manage” other persons with physical differences.  We don’t “manage/ control/ command” those who are not mobile.  We understand their needs then provide accommodations like wheelchairs, or scooters or other equipment as appropriate to their general and specific situation.    We do not expect that they walk up stairs.  We make ramps or curb cutouts or elevators available.  We uphold their basic human rights and offer reasonable accommodations.

Persons with FASD should be treated no differently.  It’s just that simple.  Isn't it?

Writer's Block

There is something I want to write about but I have been tripping over my tongue trying to get it out.  I was talking about it today with a very wise friend, James Gideon, who happens to have FASD.  With his permission, here is our conversation:

Me:  I've been working on a post on how much knowing a community of adults with FASD is out there inspires me, how much hope it gives me for my son and my brother but I am having a hard time finding the right words because the inspiration I get from you guys is just so BIG.  None of the words I come up with seem enough.

 James:  Then say exactly that

Me:  It’s so important to me. I want to say it RIGHT.  I am tired of the public conversations around FASD always being about prevention.  Honestly, I don't want to hear about prevention at all anymore.

To me a “prevention only” message says that my son, my brother, you, RJ, SavAnna and all the others affected should have been prevented from being who you are.  I can’t say that.  I can’t even think that.

I LIKE you all – I even LOVE some of you, exactly as you are now.

So what I want to hear is us talking about is how to make the world work for people with FASD - how to just make things easier for folks affected

James:  Well that's what I would write, what you just told me. Write it from the heart.

I still hemmed and hawed a bit but in the end I decided James is right.  It’s more important that I say it at all than whether I say it just right.  So there you have it. 

I can’t get behind anything that says these folks are less than, or should never have been, who they are.  I do not like them in spite of their FASD, nor do I find them inspiring because of it.   I just like them. I am inspired by them because they are awesome people.  They are individuals with a lot of life experience, wisdom, compassion, energy, passion, and quirky humor.  FASD is an inescapable part of who they are but only a part.  I say inescapable because it is exactly that.  They do not “have” FASD like someone has a sweater they might leave behind or throw away.  They live with FASD and they do it very well.  I want to see us working, like they are, on making that possible for all people affected.  

You can check out the awesome James Gideon  here  if you would like to hear more of his great advice.  He's also given me permission to share some of his "FASD Tidbits" here from time to time.  Thank You James!!! 

Expectations

Image is man holding poster that says "Expectations are premeditated resentments"
image was created by me using a meme generator

That about sums up how I feel about expectations related to Little Man.  If I expect his permanently altered brain to develop on schedule or expect that a brain that is neurologically different to function exactly the same as one that is neurotypical then I am setting myself up to be disappointed, frustrated and yes, even resentful, when it does not happen.  Worse yet I am setting him up to be discouraged, frustrated and resentful as well.  I would argue that these are not emotional states associated with learning achievement.

To quote one of the smartest men ever*,  "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”   So you can imagine how I felt when I heard Arne Duncan say, "We know that when students with disabilities are held to high expectations and have access to a robust curriculum, they excel.”  Really Mr. Duncan?  How kind of you to correct me.  I assume you have years of experience caring for and teaching special needs students that inform this knowledge.  That or you have read widely and deeply into the literature and studies that show this.  I somehow have been grossly negligent in my observations of my own special needs child and sibling because I missed this entirely.  In fact, as I mentioned above, I’ve been misled somehow into drawing an almost opposite conclusion!

Therefore, I must go forth and research right now to find the error in my ways.  Imagine my surprise when I find that Arne has no classroom time in his employment history, not even with neurotypical children no less special needs.  He did not study education as an undergraduate or a graduate.  His entire connection with education seems to be on the basis of having good friends that appoint him to plum positions.  Arne also has no direct experience with special needs children personally – not through his own children or his extended family that I could find. 

Somewhat disappointed I fall back on my second thought – surely there are studies showing the truth of this.  Now here we get into some more meat!!  Yes there are studies showing that “high expectations” lead to greater success – for all children**.

What’s missing from Arne’s rhetoric however is an acknowledgement that high expectations for a special needs child with neurological differences are not the SAME expectations as those for a neurotypical child.   I understand,  I mean I really really get, how hard it is to recognize limits without limiting potential.  But it is a task anyone involved with a special needs person has to be willing to take on.  Because the mental and emotional damage done when you drive someone constantly past their limits ends up decreasing their potential in the long run.  As a mom I struggle with this every single day.  Am I accommodating or enabling?  Am I protecting Little Man’s psyche or limiting his achievements? 

I know I do not make the right call every time.  No parent of any kid anywhere manages this perfectly.  But I would hope the man charged with guiding our nations entire educational system would have a less simplistic view ***.

*The quote is from Albert Einstein.  Of course there are all sorts of arguments as to who actually was the smartest but good old Al is always mentioned up there with Tesla, Hawking, Tao etc.

**High quality studies specifically on children with neurocognitive differences are a bit on the thin side but there are some if you dig.  It’s interesting to note however that they are usually measuring “high expectations” in relation to the disability and usually in response to a specific intervention or accommodation to measure the effectiveness of that intervention – not a standardized test measuring the child.

***Not to mention some actual experience.

Seeing Through Different Eyes

A guest post from an adult with FASD, Leighann Ford.  I saw the piece below she had written and it moved me so that I had to get her permission to share it.  I am so grateful to the affected adults I have met.  They are incredibly generous sharing their thoughts and experiences.  They make me a better mom and advocate for my Little Man.

******

I think the saying that should be emphasized with FASD is one we''re all familiar with; "don't judge a book by its cover."
Sure, I look capable now... 
And for a short while I may be... 
But I cannot guarantee that long term I'm gonna be the woman for the job.

Don't judge me based off of the articulated roll of my tongue or the calibrated written word I put forth.

I will likely fall short of this as time drags forth.

And the thing I don't think people realize is how hard my self esteem is battered when I don't meet the milestones or the standard set forth by peers, teachers, parents, colleagues or spouses.

It breaks down my confidence and self esteem and I disappoint you, the person I so want to please more than anything.

I wish you knew how painful it is.

It can make or break me.

In both your eyes and my own.

I am hard on myself because I know my limitations.

I strive for MY best NOT yours.

Too bad they are both so different for if u could only see it through my eyes you'd really be amazed.

*****

I thought Leighann's words expressed perfectly what I have been trying to explain to Little Man's school.  (And what I seem to always have to remind myself of!)  The fact that Little Man knows things some times or can do a task sometimes does not mean he can do it all the time.  There gaps in his ability to retrieve information.  He's not being stubborn, or willful, or lazy.  He wants to do it.  He WANTS to please.  That is his nature.  Sometimes he just cannot.

Unintentionally we punish people affected with FASD for their successes by not seeing that it may not  be a sustainable state (or consistently achievable task) for them.  The variation may perhaps be caused by memory issues or perhaps because the tremendous effort it takes to produce that result is just not sustainable for long periods.  Either way its damaging to set them up for failure that way.

I am using Leighann's words to remind me (and my son's team)  to do two things:

First, compare my son's achievements only to himself.

And second, remember that he is not going to produce the same results consistently.  

And really, who does?  We are, all of us, humans not machines.  Neurotypical people may have smaller variation between their "on" and "off" days - but we all have "off" days.  Compassion and help really ought to be our default setting.