Thursday, October 30, 2014

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.  

Wednesday, October 29, 2014

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.

Wednesday, October 8, 2014

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 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 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!!!

Monday, October 6, 2014


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 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!    

Friday, September 12, 2014

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?"

Wednesday, September 10, 2014

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...” 

Tuesday, September 9, 2014

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.

Tuesday, August 26, 2014

My Outrage is Showing

As September 9th, 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 9th 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.  

Sunday, August 24, 2014

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.  

Wednesday, August 20, 2014

The Heart in You is the Heart in Me

image by Olivia House Photography - found on Pinterest

I talk most about the impact of prenatal alcohol exposure (PAE) to the brain because that is what impacts my son’s daily life the most.  But alcohol exposure in utero can adversely impact any part of a developing fetus.  The impact is, as always, dose dependent, meaning the more alcohol the larger the potential impact.  What feels that impact, i.e. what part of the developing child is affected, depends in a large part on the timing of consumption and what is developing at that time.  Many people focus on the first trimester as the most critical time because the development of the fetus is most dramatic then but the truth is parts of a baby are developing the whole 9 months and while the most severe damage (including fetal death / miscarriage) is most likely in the first 3 months – some pretty rotten stuff can happen from alcohol exposure at any time during the pregnancy. 

One of the potential issues people seem unaware of is how PAE can affect the heart.  People with prenatal exposure are at risk for defects to the tricuspid and mitral valves leaving them either malformed, missing, or dangerously thinned (which then allows blood to flow backward into the atria); ventricular septal defects, commonly known as a “hole in the heart” between the left and right ventricles; and enlargement of the left ventricle, the primary pumping chamber in the heart.  Any of these issues, when serious enough, could cause the need for surgical correction.  All of them if present, even in a milder form, make the heart work harder and age faster than normal, leading to the increased risk of heart disease in general in the future.  the first sign of these sort of problems is usually a heart murmur found during an infant exam.

Development of the heart begins during the third week of pregnancy when most women are not even aware that they are pregnant.  Alcohol interferes with the migration and specialization of the cells forming the structure of the heart.  It’s worth noting that one study by Case Western University showed that a single binge drinking episode timed at the beginning point of the heart’s development was sufficient to produce dangerous impacts to the heart. Genetic background is of course an important factor in moderating alcohol's effects on the developing fetus

It is common for babies exposed in the womb to have a heart murmur that fades away by one year of age. Unfortunately because PAE has been found to reduce the ability of the heart to contract at the tissue level the risk of developing heart problems does not fade even if the murmur does.  Most parents, upon hearing that a heart murmur has “resolved” would consider that any danger of cardiac issues had past.  Little Man had such a murmur.  Its long since gone.  While I don’t talk about it often it is something that stays in my mind.  Because of his prenatal alcohol exposure his cardiac function is something we will have to worry over – and perhaps monitor - his whole life. 

I've been thinking about this more recently because I have been having some concerns about my own heart health.  Which, of course as any personal health issue does, leads me into worry about who will take care of my son someday (hopefully a long, long time from now) when I am not here to.  Today, I refuse to travel down that rabbit hole of fear though.  Instead, I'm going to remember what Little Man said to me the other day about hearts and family and love.  

"Love is when you feel warm and safe because you have your family in your heart." 

Yes baby.  Yes it is.  

Tuesday, August 19, 2014

A Picture is Worth a Thousand Words

I wish I could find time to write here more often.  I don't know how other special needs mom's manage to write daily. I am in awe of them.  I really am.  I was trying to figure out where my time keeps disappearing to and I decided to lay out Little Man's schedule of appointments, consultations, and therapies.  I finally gave up on doing it in just list format because I kept getting confused and missing things.  So here's my visual representation: items in Red are things that he does at least once a week (some like Speech and OT are everyday), Orange happen monthly or every other month, Yellow at least 2 times a year, and finally the White are one off activities.  (We usually end up with one of those a year.)

Image is a word web created by me

Because we live in the middle of nowhere most of these require at minimum a 20 minute drive - some as long as an hour.  It averages out to about 12 hours a week.  OK - feel less guilty about the lack of blog posts now.  I'm sure that those other special needs mommy bloggers are carrying loads just as large but you know what - this is crazy for anyone!!  We all need a nap!

It is not uncommon for a child with FASD to need care webs as complicated as this.  True we could crop some of the items - he does not have to go to Hippotherapy and Music therapy and Play therapy.  But many  children with FASD would have CPS appointments, and SSI, and other items to fill in.   We do things like that in part because Little Man is not able to participate in soccer, or cub scouts, or other typical after school activities.  We've tried and they just do not work for him.  He really enjoys his time with the play therapist, he loves the music and the riding.  They are his "extra curricular activities."   They also have the benefit of really helping him develop better sensory integration and social skills. So I'm not whining - or at least I'm not trying to.  It honestly did surprised me how much time it all takes added up.   Now if I put up a list of housework and errands I do - that would be whining!

Thursday, August 7, 2014

Do You See What I See?

We went to the developmental ophthalmologist for the first time today. For those like me that didn't know the difference between a developmental ophthalmologist and a regular ophthalmologist, a developmental ophthalmologist is an eye doctor who has completed two to three years of post-graduate training and is credentialed as a Fellow in the College of Optometrists in Vision Development, or F.C.O.V.D.  

We made this appointment at the recommendation of his occupational therapist who mentioned that she had noted he has problems with eye tracking and with shifting vision from near to far.  Little Man already sees a regular ophthalmologist and wears glasses.  Since we (and Little Man's teachers) have seen the same problems we've mentioned his issues there but the Dr just assures us his proscription is correct, so we thought it would be a good idea to go ahead and get the developmental screening done.  He clearly has more going on than just visual acuity problems.

As expected Little Man showed signs of learning related vision problems in his screening.  If anyone is wondering if someone they know may be having problems, the symptoms of learning related vision problems include:

  • Headaches while reading or writing
  • Blurry vision when reading
  • Difficulty smoothly reading across a line
  • Skipping words or entire lines when reading
  • Difficulty copying from the blackboard
  • Avoiding reading and writing
  • Poor reading comprehension
  • Short attention span
  • Moving one’s head excessively when reading
  • Poor handwriting
  • Burning, itching, or watery eyes
  • Bumping into things
  • Holding books too close or too far
  • Squinting
  • Difficulty recognizing faces

Little Man was diagnosed with Ocular Motility Dysfunction and Accommodative and Vergence Dysfunction, specifically. This is of course in addition to his overall sensory integration issues with coordinating visual input with spatial, auditory, motor, or tactile stimuli.  I can’t say we are surprised.  Issues with the formation of the visual system (and the ears although that is a whole other series of posts) is common with FASD.  Up to 90% of children with prenatal alcohol exposure show ocular manifestations (Strömland, 1985, 1987)

So now we are trying to find some way to fit regular follow up with another specialist and weekly vision therapy into a schedule already crammed with OT, PT, Speech Therapy and too many specialists to remember without “the list.”   I am never ever unwilling to do anything Little Man needs. I sure do wish there were more hours in a day though. Sigh.

Tuesday, August 5, 2014

I really hate to do this...

Image is drawing by Alec Monopoly of 
Rich “Uncle” Pennybags from Monopoly

...and I promise not to make a habit of it but I'm currently spending a fortune on travel and training related to advocating for persons with FASD.  So I started a CrowdRise campaign to help cover half of one of my largest expenses coming up.  If you can kick in anything to help I would be almost pathetically grateful (as would my poor long suffering husband).  I promise not to make a habit of this kind of posting!!

Saturday, August 2, 2014

Further thoughts on MILE

I learned one new word – Subitizing – ability to automatically see small sets of items as a unit and short cut counting.   (So as an example – seeing the dots on a die and “just knowing” how many are there is subitizing)  There is a whole paper on what Subitizing is and some research history on theories of how we develop it hereI can easily see how this is a skill our kids probably have a hard time with and develop more slowly (if at all) and how it affects their math abilities. 

A lot of the MILE program background theory seems to rest on Vygotsky’s Zone of Proximal Development  (ZPD) Concept.  (ZPD) describes the area between a child’s level of independent performance (what he/she can do alone) and the child’s level of assisted performance (what he/she can do with support). Skills and understandings contained within a child’s ZPD are the ones that have not yet emerged but could emerge if the child engaged in interactions with knowledgeable others (peers and adults) or in other supportive contexts (such as make-believe play). According to Vygotsky, the most effective instruction is the kind that is aimed not at the child’s level of independent performance but is instead aimed within the ZPD. This instruction does more than increase a child’s repertoire of skills and understandings; it actually produces gains in child development.

This kind of intrigues me because Vygotsk’s work was done in Russian schools where rates of fetal alcohol exposure are rather high.  In the US Vygotsk’s work can be seen in practice in Tools of the Mind Programs, which I have had an interest for a while.  Seeing his concepts pop up again makes me even more interested in finding out more about that.

So, Day Two was almost all practice of the MILE method with emphasis on the FAR approach.  There were no actual kids with FASD present to practice with – which is a drawback of the training program but sort of understandable because, well, the logistics would be mind boggling.  You could not expect the same kids to sit through the same lessons over and over again even if they were neurotypical.  They try to overcome this by requiring you to complete a 4 week training plan and submit at least 3 videos of you conducting those sessions before you will be considered certified and get credit for the class. They will provide feedback after each submission and may request more than three before providing certification.  I am interested to see what comes from doing those.  No one said what would happen if you did not meet their expectations after additional submissions.  I wonder if it is possible to “fail” this class and not get certifications.  Considering how hard  and non-intuitive it can be to work with prenatally exposed persons  I would hope the answer to that is yes.

Going back to my Day one observations – which were jotted on a digital note pad as we went through material and trying to be more thoughtful about my first impressions I would have to say my overall impression of MILE is that it has had success because it focuses on teaching in the manner that folks with FASD learn.  Slower pacing, more frequent repetitions, teaching at the developmental level not age or grade level, making concepts concrete with manipulatives, a focus on the learning environment and making a positive relationship between the MILE coach and the student.

I’m really in the air over their position on FASD’s issues with Cause and Effect Thinking.  First of all, there were three instructors and the one that went over this first really pushed my buttons.  She made the bald statement that the belief that people with FASD cannot learn cause and effect thinking is a myth and even animals can learn it from behavior mod.  I was so flabbergasted at how unbelievably insulting comparing my child to a dog was that I couldn’t even blast the woman.  And then fortunately or unfortunately her portion of the session was over and she was gone – not to return for the rest of the class.

Conversations with the other two folks moderated that stance quite a bit.  They agreed that deficits in cause and effect thinking were a hallmark of FASD.  Their theory is that this type of thinking is very rarely specifically and explicitly taught so, since there are many skills our children do not learn without explicit teaching, we cannot know if explicit repetitive teaching of cause and effect – in concrete ways, with multiple repetitions in multiple contexts, would improve that ability.  They believe it will and they believe the research on the effectiveness of MILE shows it is.

I am not a research PhD but it seems to me that the success of their program in improving math skills could just as easily indicate they have improved adding, subtracting etc. without improving cause and effect thinking.  Their intervention around the meta cognitive part is the FAR (Focus/Plan, Act Reflect) structure or scaffolding they build each lesson on.  I think because FAR adds structure it is again teaching in the way affected persons learn best.  So are they really improving cognition / developing the brain?  I don’t know.  If the method works to help a person learn basic math skills I’m not sure it matters. 

However, if the idea is over applied – like I jotted down in my rambling notes the first day – if the research papers and program proliferation leads to people believing that the FASD brain can be “cured”, if it sets up more unreachable expectations for folks already beset by them – they I think this can be harmful.**  They acknowledge that in their study results only 2/3 of the students really improved in Math skills so this method (taken as a whole not just the FAR portion) may not work for all fetal alcohol exposed children.  They don’t totally ignore the idea that some may not be capable of learning the cause and effect but I think they are kind of blind to the possibility that the explicit teaching of the metacognitive skills may not be creating the improvement in math.  Just the teaching in ways that meet FASD needs 1:1, repetitive, relational, concrete etc may be causing all the improvement they do see.  And the kids that seem to be generalizing the “focus act reflect” methodology are just parroting something they know the researchers like – not really internalizing it or going to be able to generalize it.

They are planning to do another study applying this FAR method to a completely different set of skills (not Math related) as a way of “checking” the effectiveness of it.  But if they are going to use all the same already known effective teaching methods for folks with FASD then I have to wonder if they really will have proved anything about FAR itself.  I think I really gravitate toward FAR because I am very much a planner personally and  it appeals to me because of that.  It’s also very like the Plan Do Check Act model that a lot of quality control is built on.  (Quality and statistical analysis is my day job after all.)

There was one of the researchers that was really open to continued dialog and I’m hoping to continue to my conversations with her via e-mail because the class itself is really compressed and probably too short for what it really needs to be.   All in All I'm glad I went.  I can see me using this program with Little Man to give him the additional time he needs to build skills the public schools are forced to go through too fast for him.  I can also see the value in having an "evidence based program" endorsed by the CDC to bring to the school that insists that the one on one component, slower processing pace, need for repetition, concrete / manipulatives etc. are all required.  

** So the big debate I got into with them at the beginning was over terminology and how certain terms are really harmful to our kids in trying to develop understanding - for example the tendency for people to discount pFAS as less serious than FAS when the difference may only be facial features and someone with "partial" FAS may be just as cognitively impacted or MORE so than someone with the facial features that gets a "full" FAS diagnosis.    

You can see my initial thoughts from during class here