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.  

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.  

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!

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.

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!!

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 here. I 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

Random thoughts from Math Interactive Learning Experience - Day one

Ok - I will write something more coherent about this when I have not been up so long listening and talking so much and don't still have homework to finish for day two.  But here are some random thoughts I jotted down as we went through day one:

I’m so excited and oddly enough anxious.  I get these odd anxiety attacks at times and I’m always surprised by them.  I’m sitting here in the class waiting for it to start and I’m hoping that once we dive into the material the nerves will melt away. 

Only 15 min into class and I am already in passionate discussions with the presenter about terminology and the impacts of such.

Oh I SO Need a copy of these DTI slides!!!

Interesting idea about the pattern of damage in the brain – appears that most serious structural issues are in the central line of brain just as in central area of the face.  (Wonder how that matches to ASD?)

Cool way of pointing out perseveration to the child – talking about what is happening in their head to try and break the cycle even if they don’t totally get the point you still have started them thinking in another direction.  Do it often enough and maybe it will start to become habit when they feel frustration rising to think “hey maybe I’m stuck”

So a lot more of this program is really about a Behavioral Intervention to teach arousal regulation skills and thinking skills than Math per se.  Math is the topic they picked but you could apply same principles to any subject.  Interesting blend of intervention with the child and changes to environment.

hmmm – they appear to be stressing building graphomotor skills as part of math.  Wonder why making an accommodation on that part is not part of the program.  They think learning to write helps learn the math but I wonder if it is just the repetition in another format that is the benefit

Perseveration comes up again – issue of being able to accept correction of thought process stuck in that one way of thinking and unable to see / hear / process the correction.

Says that “can’t understand cause and effect” is a “myth”  Hope they will explore what they mean by this more because it seems to contradict a lot of what I’ve heard before.  I hope what they are saying is that it is not a natural thought process for them but can be explicitly taught.

 

They say absolutely that behavior mod works – if focused closely enough and done properly – And the mention sticker charts – AHHHHHHHHHHH – I am exerting enormous control to not run from the room!!

NAAP – is about to launch a program to push FASD knowledge with this with general pediatricians next year!!!!  Boy has that been a long time coming but glad to hear that it will be rolled out finally.

Break

Some parts of this is really NB consistent some not as much.  They definitely are on the dysmaturity and addressing the child at developmental level.

HUGE focus on one to one and relationship building which is totally geared to FASD learners.

Visual spatial issues can be part of the problem with understanding temporal concepts – hmm had no idea they were related.   Cool that they have some ideas of how to address this.

This Focus Act Reflect model of teaching math is actually teaching them thinking skills.  I wonder if we could get this same model being used in every aspect of learning (home, all subjects at school, in social interactions) what would that do for thought process development?  Could the amount of “contact time” with the thought process be as useful to developing that skill as the amount of contact time with a subject matter helps knowledge in that subject?  Interesting idea.

Changing view from “child can’t focus”  to “child has not learned focus skills yet.  I kind of like this.  I think it plays into cause and effect – instead of saying they can’ learn from it let’s say they have not learned that skill.  Is it possible they will top out in their ability before they make any huge link?  Sure.  But we have to explicitly teach from a very basic level repeatedly before we say can’t at all.   Ok – I can accept that.

Math observation checklist Layout follows developmental model.  Ranges from earliest skills to later skills – makes sense I like it – we are not looking at grade level requirements but developmental ones.

Have to master earlier skills first in order to master later.

Talking about planning sessions – huge focus in how to keep and slowly build attention. 

Also talking about allowing processing time!!  Ten second rule.  Studies show most teachers ask and expect answer w in 2 sec.  Teaches either impulsivity or passivity. Blurt out anything (or get angry) or tune out because they will move onto another student.

Method sounds simple /  intuitive – betting like NB model it is not necessarily as easy to implement as it sounds.  

There are more coherent thoughts about the program here