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

Lobbying for the PITA Award

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

H-

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

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

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

T.

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

Understanding, Support, and Accommodation First

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

I think it is time we put aside FASD prevention.

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

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

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

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