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

Happy, Happy, Happy

Little Man is just making progress all over the place at the moment.  I used to be the person always looking to the next challenge instead of enjoying the now.  My son has taught me to savor the moments like this week when I heard him self advocate for the very first time.  He has said something cute about wanting to go to Disney world and both Nana and Daddy started asking him to repeat it and to recall all kinds of moments from the trip we took there 2 years ago.  I could tell they were overwhelming him but before I could step in and try to slow them down Little Man threw up a hand in the classic "stop" pose and said, "I don't want you to talk more right now.  Its too hard to think."

Wow!!  Just wow.  We talk to Little Man about how all brains are different, about how his need more time sometimes and mommy's needs more quiet than his does and daddy's brain doesn't work good early in the morning.  We talk about asking for what we need.  "Hey buddy mommy needs a little quiet time ok?"  "How about you and I go for breakfast and give daddy some more sleeping time?" But I've never been sure how much of that he understood or was taking in.

How totally awesome to see him reflect it back and make it work for himself!!  I'm doing a fist pumping boogie over here.  This is even bigger than the shoes!!

Image is from the baby fist meme all over the internet

Skirting the Edge of Self Pity

I’ve been having a bad few days*.  It’s tempting, oh so tempting to just give into to them – to just wallow and say it’s not fair.  It shouldn’t be so hard.  No one understands.  No one cares.  It’s even tempting to say I don’t understand why I feel so bad and I don’t know what to do about it.   It’s not any one thing.  It’s everything.  My life is so hard.  There’s nothing to be done.  Waa, waa, waa and down into the pity party I’d fall.  But that is not true.  I do know why.  I’m tired.  Not just a little tired but bone dead haven’t slept well in over a month tired.  If there was a color coding method for tired the way they do the terrorist threat alerts I’d be at red.* 

I even know the reasons why I am so tired.  It would be easy to say it’s because of Little Man but that would not be the full truth.  The real reasons are: One, I have not been taking proper care of my body.  I have skipped workouts, not been eating well consistently, and I have skipped my medication.  Two, I haven’t been keeping my environment healthy.  I’ve let the house, my office, and even my finances get out of control.  Disorder in any one of those always throws me out of whack.  Three, I’ve been neglecting my spirit.   I have not been taking time to reflect and journal and pray.  As much as I preach structure and schedule to everyone in my son’s life for him, I need to preach it to myself – for myself.  I need to keep those things happening on a regular basis.  A tired weepy mommy (or a cranky snappish mommy) is not good for any of us any more than an overtired disrgulated Little Man is.  For both of us these unpleasant moods tend to spiral. 

If Little Man gets overtired and disregulated not only does he have trouble with his speech, his coordination, and with his behavior, he fights sleep ever harder and harder.  And so each day gets a little worse than the one before.  When I let myself get over tired and slip into sad (or mad) then I let the things that normally keep me on track go even more.  Who has the energy to work out, or clean, or write?  But at some point my slide starts to affect him.  And if I miss those warning signs then we can spiral down at warp speed.  My being off kilter throws him off and then we just escalate each other down and around and down. 

Last night was a warning sign.**  Actually there have surely been some I’ve already missed because last night we had already hit the point where he and I start escalating each other.  Little man has not been sleeping well again for a while. ***   This in and of itself is not unusual.  Sleep problems and FASD go hand in hand it seems.  In fact, some of the writing I’ve been neglecting is ruminations on a couple of articles about sleep I ran across recently.  But I’m not ready to dive into them just yet.****  His sleep disruptions invariably become my sleep disruptions.  I know when he is having trouble that it is doubly important to keep myself on track so I can help him find it again but this time I failed at that.  Well perhaps not failed, stumbled.  I love the Albert Einstein quote “You have not failed until you quit trying.”  I have not quit.  But I was using ineffective methods. 

I started with just trying to put him back in his own bed over and over each night, exhausting myself and then letting things like getting up early to work out give in response.  Then when both lack of sleep and lack of exercise were wearing me down to the point I could not wake up each time he did I started pulling him into bed with my husband and I.  I’m not against the “family bed” idea in and of itself but OUR family bed is way too small for our family to get any restful sleep.  Further worn down I started trying to steal naps during my quiet time and writing time and skipping housework I usually do after Little Man goes down.  The naps didn’t help because I was always tossing and fretful about what I was supposed to be doing or the increasing disaster zone of my house and thus accomplishing neither rest or selfcare.

Only when I was ridiculously far down my own rabbit hole did I think to ask Little Man why he could not sleep.  When he said it was because his bed was too cold I went out and invested in new fleece sheets, a fuzzy blanket and heated mattress pad.   These are not bad strategies, not the asking  him directly or the material environment modifications.  But I went badly wrong by waiting until I was exhausted before trying something different.  Last night was the debut of the new bed AND … of course it did not fix the problem, last night. *****

No surprise that today I was even more a mess – but peeling myself away from the situation for long enough to sit and write – I can see it more clearly.  This is not a problem of one night’s making and unlikely to be fixed in one night.  Sensory issues may have started him off but he’s in a pattern now.  Little Man can perseverate on a pattern like no one’s business.   It’s my job to make sure the ones he settles in are healthy and productive.  I dropped the ball a good while back when I stopped taking care of me.  Last night I was stressed out, exhausted, did not follow our routine for bed and was way too invested in a magic bullet solution to our sleep problem.  I was overtired all day and let him do activities that wind him up rather than insist on the soothing ones before bed.   So of course we did not have a good night’s sleep.  The best environment in the world was not going to overcome his being overtired, overstimulated, and stressed out by a cranky worn out mom.

Which brings us to today where I ramble on as I try to unravel the threads of this knot.  I needed some time for me.  Nana is taking Little Man on an adventure he will enjoy.******   I wanted to sit and stew and fret and yes waa, waa, waa with the time she is giving me.  But I am the one that neglected the maintenance that made last night’s train wreck possible.  So it’s my job to get us back on the tracks.   I could have tried to force myself to dive into a work out, or a nap, or chores but I know that I needed this first.  To sit, sip coffee and write, to see the big picture and make a plan.  I have a bad, bad tendency to let myself go, to try and do more, be more for everyone else.   It’s my own little perseverative pattern.  I have to go back and tell myself again and again – it doesn’t work like that.  You have to take care of yourself if you are going to be able to take care of them.     I also have to see clearly that I can’t fix what has crept up on both of us over several weeks’ time in one night.  I need to do a little today and then a little more tomorrow, first just to slow the downward momentum but then finally to turn that spiral down into an upward spin.

I’m ready I think.  I’m going to close down the lap top.  Get a coffee refill to go and head home to make dinner.  And cupcakes.  Little man will enjoy that.  And it should keep us quietly occupied until time to start bed time routines.  I will do the dishes after he falls asleep and then I will go to bed.  We won’t sleep through the night.  I’m not even going to think about that.  I’m looking for peaceful, snuggly, reassuring awakenings and one step in the right direction.  In the morning I will stretch.  I’ll do just one of my work out exercises and take one more step.

*Or defcon 5 or whatever it is.

** More like an air horn shot directly in the ear.

***It’s a bad sign that I cannot pinpoint exactly how long right?  Yeah I suck.

****Although unsurprisingly, just sitting down here and writing is helping my mood and I feel more interest in diving into that than I have since I first found them.

*****I did not handle last night well – let’s leave it at that shall we?

******Bless you Nana!!Thankyouthankyouthankyouthankyou!

Humbug

As a first post of the new year I feel like I should be all motivated and inspirational but I'm just not feeling it.  I feel just as physically tired and emotionally worn down as I did before.  I'm not getting any happy, anticipatory lift out of the new year stretching out ahead. 

Can I confess to you here that I am extremely happy to have the holidays behind us?  I packed away the last of the decorations this weekend and finally finished locating space for all the new crap we accumulated over them.  I really want to start doing "experiential" holidays from now on.  you know going somewhere and doing something as a family for the holiday rather than spending too much money on junk that we don't need and then have to spend the rest of the year picking up.

I will say that at one gift does seem to have been worth the money spent.  Little Man LOVES music and the musical toy I found for him has been used so much we've had to replace the batteries already.  Its called B Symphony in B.  It has 13 separate instruments that you can place on a stage area.  It will play a tune - with the instruments you select.  So you can listen to Beethoven's fifth (or I'm bringing home a baby bumble bee) played by the accordion, or the tuba, or the banjo - or all three together.  If you have a child that really likes music - I highly recommend it.

Merry Neuro Compromised Christmas

Even though our extended family understands that Little Man has FASD they still just do not get what that means some times.  Holidays are almost always one of them.  Some things that children (and adults) look forward to with pleasure all year are absolute torture for a child who has neurological differences effecting his sensory processing and emotional regulation.  So there are things we just don’t do – no matter how much begging we get from the family and no matter how mean they think we are over it.  For example we will not be:

Riding the polar express – For neuro typical children it’s a magical one hour train ride where they read the story book aloud, serve hot cocoa, and get to meet Santa.  For our son its 60 minutes of not being able to sort out the story from all the other noises, too many people he doesn’t know all crowded too close to him, a treat everyone else can have but him (allergy to chocolate), and way too long a time spent in a line for way too short a time spent with “The MAN”.  Then inevitable scene as we drag him away from Santa so someone else can have their turn.  No thanks – we will stay home and watch the movie together eating hot air popped popcorn with plenty of real melted butter ( a treat he can have).

Doing “Elf on the Shelf” – most kids are mature enough by 6 years old to control their impulse to scale the side of the refrigerator to get to the “elf”.  My son?   Not yet.  Not to mention the fact that he thinks they are scary looking. 

Caroling – it takes little man a very long time to learn the words to a song due to his slower than average auditory processing.  He can and once he has memorized one he never forgets it.  But getting him to sing them in front of people is very hard if not impossible – even people he knows well.  So a command performance is just not gonna happen.  We do sing together  - but usually in the car.  Since no one is looking at him there he is happy singing along with his favorite CD of Christmas songs.  And we go see the Nutcracker.  He is enthralled and soothed by classical music and as long as we sit in the back we can slip out without disturbing others if for some reason he cannot make it through the whole performance.

Midnight Mass – Messing with the schedule is always a major no no.  With all the other unusual stuff going on (no school, Christmas tree and lights at the house, people stopping by) there is no way I’m keeping him up 4 hours after his usual bed time.  The church we attend has a 5 PM service.  We will be going to that.  Little man is even going to be in the nativity play.  I figure there was probably at least one shepherd at the real event that looked sort of confused and out of it so he’ll be authentic. 

Displaying wrapped gifts from the family under the tree before Christmas morning –  I’m sorry, I think that is mean for all children.  For mine it is a temptation that is totally beyond his ability to resist.  Wrapped gifts stay tucked away until after he is a sleep Christmas eve.

Big Family Christmas parties – these are way to over stimulating for Little Man.  We go when we cannot avoid it but I would so prefer not to.  There is always food he cannot have and that we have to watch to  be sure he doesn’t get into, too much noise, and too many people.  He doesn’t enjoy them and usually ends up hiding in a corner or under a table.  And gift time almost always ends in some kind of tantrum – large or small, because he wants what someone else has.  I like it when we can manage smaller groups best.  Little Man can actually enjoy those.

I’m sure that other families have other cherished traditions that we could not participate in but these are the ones that seem to irk mine the most.  Christmas is supposed to be magical and fun for kids.  There are certain things I just have to do differently to make sure it is for mine.

Exercise and FASD

I recently read a review of  SPARK: THE REVOLUTIONARY NEW SCIENCE OF EXERCISE AND THE BRAIN by John J. Ratey.  In the review written by Rich Haglund I was caught by this particular paragraph:

Participation in … physical activity before school started led to significant academic achievement. On the Trends in International Mathematics and Science Study (TIMSS), Naperville students finished first in the world in science and sixth in math, behind Singapore, Korea, Taiwan, Hong Kong and Japan. Because Naperville is a “demographically advantaged school district,” Ratey looked at poorer communities where Naperville-style PE programs were applied. In Titusville, Pennsylvania, similar results occurred. Since implementing the program, scores in Titusville went from below the state average to 17 percent above the state average in reading, and to 18 percent above in math.  

I was hooked and went looking for more information.  I hoped to see if there was any cause to think that this general result would prove applicable specifically to children with FASD.  In the words of John Ratey himself I found this:

“Exercise turns on the attention system, the so called executive functions-sequencing, working memory, prioritizing, inhibiting and sustaining attention…. On a practical level it causes kids to be less impulsive which makes them more primed to learn.”

Yowza – sounds tailor made for the FASD brain doesn’t it.  Anytime something sounds too good to be true I like to dig further to see who the source is and if there is more than just their voice.  John Ratey is an associate clinical professor of psychiatry at Harvard Medical School so I am pretty comfortable there.  I also found information on research by Dr. Brian Christie, a neuroscientist at the University of Victoria into the Exercise / FASD link.

Dr.Brian Christie  (link to the article) and Dr. Chris Bertram are hoping to prove that exercise and use of motor skills strengths can positively change the FASD brain specifically.  They have already completed animal studies on this connection and currently have a study of the impact on human subjects going on right now.

In the documentation for their animal studies they note that exercise has been used to improve the brain in other brain disorders and to help those with traumatic brain injuries for years, with much success. So logically it should follow that the same could work for FASD. You can find more info on their current study here .  They are using cardio bikes connected with video games to hold the childrens' interest in exercise for the required length of time. 

In their animal models of FASD, the scientists behind this study have been able to significantly reduce neurocognitive deficits by having animals engage in regular cardiovascular exercise. The results are dramatic, and are coupled to an increase in BDNF (brain-derived neurotrophic factor). In the present study they hope to take the first steps to translate this work into the human realm.  I only wish I lived close enough for Little Man to participate – from the video they have posted of the game element he would love it and even if it doesn’t yield the same spectacular results in humans that it does in mice *** it couldn’t hurt.

Unfortunately we don’t live anywhere near there, so what can I - as parent - take from the research that is being conducted into exercise, motor skills, and the brain?  Well there are a few things I can do right now:

1. Make sure Little Man is getting enough exercise, at minimum one hour a day. 90 minutes is actually the amount recommended by doctors for ALL children so that may be an even better goal for our children effected with FASD. (I’m betting this won’t be a problem for those whose children also have ADHD)

2. Build on Little Man’s strengths. Allow him to do physical activities he is good at instead of insisting on practice of skills he doesn’t have.  Little Man LOVES to run.  His ball skills for kicking, throwing, catching, bouncing etc. are not so good.  I know at school they make him work on dribbling, hand and foot, and playing catch.  Great, good – for skill development but for just getting the heart going and neurons growing – hell let him RUN.

3.  Pick up and read a copy of Spark to see if I find more ideas!

*** Unfortunately, it is not expected to be AS successful in humans since our brain structures and function are so much more complex but it is still expected to yield positive results.  I can’t wait to see the outcome.

Overthinking?

I have to travel for business next week.  I will be gone for a full 5 days and nights.  So far I have 6 pages of notes for my husband and mother in law who will be watching the children while I am gone. 

I bet you think I am over thinking this.  In some cases I may be.  For example - I have listed Bed Time is 8 PM.  Will it kill anyone if I didn't list that or if the kids are up later?  No, but it will make for disrupted schedule which leads to bad days at school and weeks of getting back on track.  However, we'd all survive. 

Some things, like what meds to give and when (especially with Little Man's chronic infection and his constipation problems even one missed dose is a big issue) and where the nebulizer is stored if our daughter has an asthma attack (rare these days but possible) are actually important.  You'd think my husband would know these things but you'd be wrong.

Other things are really for their benefit:
Do homework first before the ADHD meds wear off. (If they wait its gonna be a long miserable night!!) 
Two stories, 10 minutes rocking, and the weighted blanket with Little Man will save them a lot of sleep.

And some are clearly for my benefit:
Remember I am three hours behind you - if you call before 8 AM your time someone better be dying.
If someone is dying, or bleeding, or unconscious, or if you locked yourself out, or the car won't start, or you can't find something - call someone closer before you call me!  What am I going to do about it from here anyway?
And most important - if you even THINK one of the kids might need to go to the emergency room - TAKE THEM to the emergency room and don't call me until you are on the way. 

And yes, I know from experience I DO need to include those last three.

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.

Brighter Days

“Gosh you’re a real Debbie Downer on the new blog, eh?” a friend said.  So I reread the whole three posts I have so far and well, yeah I guess I have been.  Sorry about that.  It’s just where I have been lately.  FASD is a never ending cycle of unpredictable ups and downs and we’ve been on the down sweep for the last few weeks.  I can see light head, and I’m pretty sure it is not an oncoming train so I should lighten up a bit soon. 

Tomorrow is the first day of school.  I’m working my way toward cautiously optimistic on that front.  Little Man and I have been going up to the school every day in the afternoon.   The teachers are there setting up their rooms and having meetings.  We don’t intrude on that, just walk around and talk about who he knows, Ms. Becky his speech therapist is in this room, that room will be his new kindergarten class, here’s the music room, blah, blah.  We play on the playground some too and talk about how it will be fun to have time there at recess each day.  Yesterday there were a few other kids around and Little Man introduced himself to one.  Yippeee!!  And he gave his new kindergarten teacher a sort of halfhearted hug.  Hey its progress!  Mom is trying to thaw out toward her too.  Her initial comment of “I’ve been doing this for 36 years.  We’ll be fine” was probably meant to be reassuring not the brush off it felt like.   He does need structure and stability and after 36 years she probably has that down, right?

We also had good news about him being accepted into the speech program at a nearby collage.  This was a find that still blows me away.  After struggling to fund $150 per session speech therapy out of pocket for almost a year Little Man’s special ed. teacher told me that a program at the college selects a few children every year to work one on one with their graduate students as part of their teaching certification program – FOR FREE. 

Three hours a day five days a week – one on one speech therapy – FOR FREE!  Anyone with special needs children needs to get their backsides to the colleges near them and see if there are programs like this for your child’s needs.   If there isn’t you need to suggest one to them!!  For real people!  I would have paid $13,500 for this amount of one on one help if I had not found this!!

Anyway with his teacher’s recommendation and my impassioned pleas we managed to get Little Man accepted to the summer program.  He made great progress and more importantly he LOVED it.  I have been holding my breath waiting to see if he would get into the school year program as well and he has!!  It is not a pain free program for us.  The financial burden is gone but the school is 45 minutes away so I did have to negotiate an altered work schedule so I can get him there and back.  Because of that It will only be twice a week not every day like the summer program but I am still thrilled. (and worried about if my boss will get sick of it and renig but that's aproblem for another day!)  Little Man does receive speech therapy at the school but it is half an hour of group time.  That was just not making a difference for him.  This summer program has and God willing the school year program will continue to even though its not as intensive as the summer program.

So, brighter days ahead, and darker, and brighter, and darker, and brighter and .... you get the picture.