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

A Sneek Peek

I don't post photos of my kids on here.  Its one thing for me to let all my stuff hang out there but I feel like I ought to maintain at least a little anonymity since so much of what I talk about is my kids business as well as mine and they are not making that choice.  If you check out this video on FASD you will see my Little Man though.  I'm just not saying which one he is. 

http://www.youtube.com/watch?feature=player_embedded&v=I2cmss3tZ1s

Incredible People – part one

You know I spend a lot of time complaining about how there are so many people that just don’t understand FASD and or just don’t care that I thought, now in November, maybe I should make a real effort to highlight some of the really superb, knowledgeable, caring people that are out there that I am so thankful to “know”*.   I’m going to start with one I have mentioned before, Diane Malbin. 

Diane is the executive director of FASCETS, a private, non-profit 501(c)3 organization dedicated to prevention of FASD and to preventing secondary defensive behaviors and improving outcomes for people who have FASD (by increasing understanding of FASD as a brain-based physical disability).  She was recognized by NOFAS in August of 2012 for her outstanding contributions  to the efforts to combat FASD.

Diane is also a clinical social worker, program developer, and consultant who provides information and services for individuals, families, and agencies dealing with FASD.  She has written two books, Trying Differently Rather than Harder  and Fetal Alcohol / Neurobehavioral Conditions: Understanding and Application of a Brain-Based Approach - A Collection of Information for Parents and Professionals.  I own two copies of the first book.  I use one to loan to teachers, doctors, therapists and others that work with my son.  The other I reread myself regularly as I mentioned here because it is just that good.  I am eagerly awaiting the two copies of the second book which I currently have on order.  I fully expect it to be just as good.

I first had the opportunity to hear Diane speak as part of Jeff Nobel’s Caregiver Kickstart program.   Her approach to linking the specific brain dysfunctions suffered by those with FASD to the behaviors those dysfunctions produce made automatic sense to me.  It was one of those “A-Ha! Well Duh!” moments you have when presented with an idea that is brilliant in its simplicity.  Like a lot of things that are brilliantly simple – applying the neurobehavioral paradigm Diane proposes is not as easy as it is seems.  The change in thinking can be very hard to do, which is why I am so absolutely thrilled to have the opportunity to meet Diane and speak with her in person later this month!!!

This is what I think makes Diane such an amazing and outstanding person.  A stranger (me) contacts her out of the blue and asks for her time and her answer is, “of course”.  You’ll probably see me writing more posts about Diane’s neurobehavioral approach as I work through some of the material she sent me to look at in advance of our meeting.  I think my understanding and ability to talk about and really apply it will be much enhanced by that meeting.  But that doesn’t change my earlier recommendation – if you deal with someone who has FASD – go get a copy of her books.  Heck, get two of each – they are more than worth the price. 

*For most that means “know” in the virtual sense.  I’m not a big web surfer but for finding information and support on FASD the internet is a powerful tool.

FASD and Sleep

That we are not much sicker and much madder than we are is due exclusively to that most blessed and blessing of all natural graces, sleep.   ~ Aldous Huxley

For those suffering from FASD severe lifelong sleep troubles are often associated with their condition.   We have very definitely experienced this with Little Man.  He has exhibited all of the classic sleep issues of an individual with FASD; delayed sleep onset, frequent waking, night terrors, and early waking.   There have been times where I went days with no more than 4 hours of sleep.  This is unbelievably disruptive for a caregiver / parent but I also think it is horribly detrimental to the child.

 It’s well documented in the medical community that inconsistent or inadequate sleep creates health issues, behavior issues, and problems with cognitive function.  The most typical behavioral and cognitive symptoms read almost like a list of FASD symptoms.  Behavior symptoms induced by sleep issues include hyperactivity, aggressiveness, inattentiveness, impulsivity, depression, and other mood disorders.    Cognitive symptoms include problems with verbal fluency, comprehension, abstract and deductive reasoning, planning, flexibility, inhibition, problem solving, attentiveness, vigilance, memory formation and motor skills.  I’m not by any means suggesting that sleep issues CAUSE the problems of FASD.  Alcohol exposure during neural development did that.  BUT I think it’s reasonable to say that sleep issues amplify these issues and may interfere with interventions aimed at improving them.  Given that, treating sleep disturbance in people with FASD should be, in my opinion, a major concern and focus of interventions aimed at improving their skills and quality of life. 

Unfortunately, there are not a lot of scientific studies backing up this theory.  Even worse, finding a doctor that specializes in diagnosis and treatment for FASD (there are criminally few of these folks) who also specialize in sleep disorders is nearly impossible.    There has been quite a bit of research showing that persistent sleep loss during critical developmental periods is especially harmful to healthy cognitive and motor development and that children subject to long term sleep loss may never reach their developmental potential.   It seems unnecessary to me to do specific studies confirming the same for children with FASD before simply working to improve their ability to sleep.  If it is critical to the development of a neuro typical child then it should be at least as important to one that is neuro compromised.   So in addition to educating more healthcare professionals about FASD – we need more to be aware of how to treat sleep issues. 

There’s precious little I can think of that I can do the help get that rolling.  But I’ve done a ton of my own research – on sleep disorders ( I suffer from insomnia myself) and FASD and interventions for both so here’s what we do for Little Man (with some theory / reasons for why / how we came up with this routine.) 

We use liquid melatonin 30 min before bed time.    Melatonin is the hormone in the body that directly regulates circadian rhythm – or the body’s sleep wake cycles.  The circadian rhythms, including sleep and pineal melatonin production, are modulated by the hypothalamus - an area of the brain frequently impacted in FASD. The hypothalamus reacts to input of light/darkness and other environmental information from the cerebral cortex (also often impaired by FASD) which then influences the timing, duration, and quality of sleep. Given that the areas of the brain regulating production of melatonin and the signals used to trigger it are often impacted – supplementing seems like an obvious tactic to me.  And for us – it works.  After adding this to Little Man’s nightly routine his “sleep onset” time went from anywhere from 1 to 2 hours to about 15 minutes.

Little Man sleeps under a weighted blanket with a very soft foam mattress pad on his bed.  The patterns of damage in the brain of a person with FASD are highly individual but tend to be widespread.  The ability to regulate sensation is almost always compromised.  Weighted item therapy has a long history of helping calm sensory dysregulation.  Plus – again – it works for us.  After adding this to Little Man’s nightly routine his “night time arousals” went from 3-4 a night to once or twice a week.  This was recommended to us by a young man who has FASD during one of the sessions we attended in Jeff Noble's Caregiver Kickstart program.

We have a set bed time routine of Bath, story time, singing and snuggles in the rocker from which we do not deviate – ever!  General good sleep hygiene suggests you should have a consistent bed time routine that consists of calming activities.  I know this is helpful to me with my insomnia.  People with FASD generally do better in any activity that is structured and consistent and often have problems with deviations from routine so this just makes good sense.  The Rocking chair portion also addresses Little Man’s vestibular processing needs.

 In times of absolute desperation - cosleeping.  We don't get much sleep if we allow little man in bed with us.  Its kind of like trying to sleep inside a cememt mixer.  But his bed has a trundle and I will at times sleep there with him if it i s the only way to get any sleep.  there is no research or recommendations I found for this - its my own last ditch idea before we found the things above.

Unfortunately what works specifically for my Little Man may not work for every person with FASD.  Hopefully it gives you some ideas though.  Other things I have seen, heard, or read about you may want to consider when looking to help your own FASD’er are:

Bedrooms should only be used for sleep - not play or punishment

No screen time for some set time period before bed

No horseplay or physical activity close to bed time especially running or spinning

More or less food before bed (low blood sugar from not eating or conversely reflux from eating may be a  problem)

Remove allergens from the room – dust, carpets, animals, use hypoallergenic covers for mattress / pillows

Deep breathing, Yoga, Meditation

Massage, Acupressure

Brushing / Joint compression protocol

Telling / reading Social Stories about sleep

Occupational Therapy for sensory integration during the day

Seek out a sleep study clinic to see if there is another underlying medical issue or advice on sleep medications

Pay attention to all sensory stimuli that may be impacting them and try to adjust that input according to their needs:

Sounds (use white noise machine)

Smells (aromatherapy can help)

Temperature

Lighting level (more or less depending on their issues)

Clean orderly soothing room – minimal stimuli – little furniture, soothing wall color, no hangings few toys etc.

Texture of bedding or night clothes

Here’s a list of my research sources on this topic to help you with our own detective work.  I wish you all good luck and Sweet Dreams!!

Sleep Health Issues for Children with FASD: Clinical Considerations/

Academic Editor: Myron Genel  Copyright © 2010 James E. Jan et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Sensory processing and sleep challenges in children with fetal alcohol spectrum disorder

Losing My Mind (A mom’s blog)

Sleep problems in FASD: A focus on solutions

Sleep and sensory characteristics in young children with fetal alcohol spectrum disorder.

Update

Sorry - I have been neglectful.  Life has been piling up as it has a way of doing and Mama is sick.  I swear I have NO immune system at all any more.  So I have been struggling to just keep up with everything going on and not done much in the way of posting. 

I am working on a couple of things for this blog though and will try to get the energy together to start getting them up here.  One is a post on sleep issues and what things we have found to be helpful with Little Man.  for another - I have been rereading Diane Mablin's book Trying Differently Rather than Harder. 

I really like the book.  I find it useful in a number of ways and wanted to write sort of a combination of book review with the spin off thoughts her work has inspired in me.  One piece of advice I can give easily is if you do not have a copy of the book get one and read it.  If you already have - reread it fairly regularly.  I am always surprised at how I can find something new or often I really need just a reminder of certain things.

Oh yeah, one final thing before I collapse back into a sniffling hacking heap - the schools assessments came back and they have decided to classify Little Man as "Other Health Impaired" and "Speech and Language Delayed".  I think of the 14 categories they have to chose from that is probably the best fit they could find.  He remains qualified for special education services for the next three years based on this.  I am, as usual following one of these meetings, happy and sad.  Sad because it is necessary.  I am so deeply sorrowful that there is no "cure" for him that will make the extra support un-needed some day.  It can be an endless sticky pit if I let myself dwell there so I don't dwell.  No amount of positive thinking completely erases all shadows of that grief though. 

Of course, I am also very glad that there is official documentation of the support he needs.  I don't kid myself that just having that will ensure it is all be smooth sailing for the next three years.  I believe (almost all) of his current team are really talented dedicated professionals that care about Little Man's success.  I also believe that the criminal underfunding of our public education system means I will always have to push and insist and be that squeaky wheel so that he gets all that he needs - but having the paperwork in place to support that is one less hurdle.  And given how little energy I have at the moment I am very grateful that it all happened smoothly and with no fight this time.