Tripping Over My Words

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

“Little Man blends in pretty well”

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

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

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

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

Why an FASD Diagnosis Is Important (A parent's view)

This is a guest post written by MAPasadena.  It was originally shared on Facebook and is reposted here with her gracious permission.

We have two daughters, adopted in Russia in 2000... One of the last one trip, one week adoptions I'd think.

Our youngest has FASD. I "knew" she was affected from the moment we met her. They are bio sisters, were a package deal and no way were we going to say no.

I think because I always saw her quirks and glitches through the prism of FASD, we parents have suffered very little additional frustration....many (who don't get a dx for their kids) acquire our own little dose of PTSD!

I realized when she was in the 4th grade that she would never earn a standard HS diploma. It was sad and freeing at the same time. She is a joy to have in our lives. Funny, sweet, loving, hardworking....quick to become exhausted, often confused, open and honest when she feels safe. My thinking has always been that we would never be able to knock the corners off her square peg, that we had to make sure the round hole was big enough she could fit in it which room to be different.

I'm on a group for parents with teens and young adults with FASD. What an endless pit of misery. So many of these families had no idea of FASD, before adoption, during the process or anywhere along the way when the child was young enough to parent differently. I hardly ever post there because our experience with our almost 16 year old is so positive....I do not want to rub salt in their wounds....but.....

I do want to encourage anyone fence sitting, dreading pursuing a formal Dx....do not fear it and do not put it off. Things can get so so so dreadfully bad for these kids as they become young adults. Sure, (hearing the diagnosis is) so sad....I gave up "Back To School Night" after 9th grade.....it just made me sad about how low her abilities are.....and made me feel a distance from her, fear being a crappy element in a relationship.....but she is not sad! She is love personified. She has space in her life so she can express her compassion for others. She has a sense of humor that delights and an eye for beauty in the world that allows her great artistic expression.

Will our retirement life look different from those with typical kids? Very likely. Will it be good life? With her in our lives, it will be without a doubt.

Don't let fear slow you down. Get the most inclusive Dx you can, you can always back off later if it's limiting. Build a case history that explains their quirks as different, not as failures. Set everyone up for successful transitioning to young adulthood.

I know some here don't want to hear about problems....and the parents on that FASD Teen Young Adult site don't want to hear about successes! (They are so down that they just need a place to vent with other BTDT parents)  I have feet in both communities....many communities. Bottom line, when it comes to a diagnosis don't wait!!!

AWESOME NEWS!!

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

Image is a Charles Schulz Peanuts cartoon 

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

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

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

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

Category                                   % of Population                         % of funding

Musculoskeletal disorders                     13%                                         32%

Blindness                                              2.3%                                         2%

Deafness                                              2.1%                                         2%

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

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

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


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

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

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?"

Keeping It Real

First I want to say I meant every word I said yesterday with all my heart.  But no matter how passionately I believe that Little Man is a glorious gift – not in spite of his FASD – but just exactly as he is, some days I fail.  I fail to see his gifts.  I fail to live in the moment with him.  I fail him. 

We had one of those last night.  Little Man has to endure a fairly unpleasant clean out process every so often because of the damage to the nerve cells in his digestive system.  This is not an optional thing.  It’s not vitamins or some therapy that I hope will be helpful to him.  It’s required to prevent some nasty, even potentially fatal, complications from his digestion issues.  (I’m trying to avoid a lot of overt poop talk here but if you want to understand more read about it here.) 

I hate doing it. He hates having it.  He insists he won’t.  I insist he must.   Last night we both insisted down to the bitter end which resulted in him having the treatment and me having the crap kicked out of me.  Sometimes things go more smoothly.  Mostly they don’t though.  It’s bad enough he has to endure the treatment.  He shouldn’t have to manage my losing my temper over it too.  But I’m human.  Getting kicked and scratched until there’s blood drawn hurts.  I raised my voice.  A lot.  I told him “You hurt me.”  “Yes, I am mad at you.”  And he cried.

It wasn’t long before he was back to his sunny self. I told him I was sorry for yelling.  He told me he was sorry for hurting me.  We kissed and snuggled for story time before bed.  We talked about it again this morning; about how important it is he have his clean out so he doesn’t get sick, about how it would go easier for him too if he didn’t fight with me during it, about how even if it goes very badly and I am angry I still love him forever and always.  He seems fine about it now but how much did I add to his fear and stress about it next time? 

I can’t know the answer to that.  And no matter how I try I can’t be perfect.  So I draw comfort from things like the advice from Mary Anne Radmacher “Speak quietly to yourself & promise there will be better days. Whisper gently to yourself and provide assurance that you really are extending your best effort. Console your bruised and tender spirit with reminders of many other successes. Offer comfort in practical and tangible ways - as if you were encouraging your dearest friend. Recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. Tomorrow comes more brightly...” 

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.