Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Friday, November 30, 2012

Good kids

some days, I am SOOOOOOOOOOOOOOOOOOOOOOOOOOOO frustrated....

and some days I remember to just watch and be AMAZED....

I have Good Kids!

Like yesterday:

We had brunch at Panera - we were commuting home from Maryland to Virginia and after getting stuck in city traffic we HAD to eat, so we went to Panera.  My kids polished off 5 meals with me...1 bowl of soup, 3 cups of soup, 2 sandwiches, 1 salad and 1 quiche.  This particular Panera was near a Big Mall and a County Government Center - they were the ONLY children in the restaurant (home schooling seems to be less prevelant in these uber urban areas - I guess they get the services they need/ want), and while there was some "contact sport" involved in the salad eating, sandwiches are supposed to have fingers, and the use of spoon was superior!  As I sat surrounded by urban professionals and uptown moms, I was very proud of my children comporting themselves approriately and decoriously.  You know, we ARE pretty cool...

Later that evening, after Girl Scout meeting, as we completed our "eternal hang out at the library" day, I momentarily misplaced my son, and found him in the bathroom, with poop all over his hands and the toilet.  He has developed some.... unorthodox.... methods for coping with constipation mechanically.  Naturally I found the librarian and asked for extra paper towels and sanitary wipes.  Thankfully it was near the end of the library's operating day and I did not have a big audience to deal with this just fabulous activity.  The library staff was nicely appreciative.  You know, we ARE pretty gross...

Once again, I am reminded that ALL lives are an amazing combination of Tradgedy and Triumph, of Greatness and Horrificness... the ups come with the downs and the downs come with the ups...

The lesson seems to be: Ride the waves, man...  Just BE where you are, 'cuz you're gonna be someplace else soon. 

It also is that everything takes 5 times longer than you think it should....suck it up.

Sometimes I am am so proud of all we are, as a family...

And sometimes I am SOOOOOOOOOOOOOOOOOOOOOOOOO frustrated...

Tuesday, November 27, 2012

Oh Christmas Tree...

So we do not put up a Christmas tree... and the stories to support that decision are... lengthy.

Oh, I tried!  When we were first married, I SOOOO wanted a tree, to feel like I was in my OWN house.  And I told my husband "we are NOT going to alternate years between parents! - we are building our OWN traditions!"  I was VERY afraid of being forced into the "every-other-year" thing after kids came - other holidays we travel, but NOT Christmas... kinda.

In reality, it's when we could get off work - so we didn't really have trees because we would be with one set of parents before the holiday and the other immediately afterwards - home for only 24 hours... traveling from one coast (California) to the other (Maryland)... it just wasn't practical or safe to have a tree (I grew up in CA - the fire dangers of a dry tree are WELL known to me!).

Then, kids came.  I was gonna do this thing AT HOME, no compromise.  One year I got a tree too big to get in the house - had to saw off most of the top.  One year, I never got it IN the house, just TO the house - put it in the dog's water bowl to keep wet - and it FROZE in there - had a BIG block of ice at the base I couldn't get in the tree stand, so we just embedded it in a snow bank outside.  The kids & I used spatulas to cover it in peanut butter and threw bird seed on it for the birds.  We cannot find our decorations anyhow.  They are HERE, somewhere, but too well stored to be accessible... and it is just TOO much work to rearrange all my crap for just one month anyhow.

And winter is a HARD time for us.  I personally have STRUGGLED with the seasonal affective disorder, BIG TIME - I grew up in Southern California!!!! we don't have this many dreary days back-to-back!  I struggle.  It was REALLY apparent in my son though...  the winter he turned 3, he lost the ability to speak... we went for 3 months with SEVERE stuttering and major head banging.  It was SCARY.  The next winter he developed weeping lesions on his face (has a scar) for months.  The next winter, we just took him out of school for the month of December - road tripped to Las Vegas - and he was AWESOME, but the that spring saw the HSP (auto-immune rash)...  The next winter was last year - the year we took him out to homeschool... the winter we found out how bad the bullying was, how he had been restrained without our knowledge, that he was having nightmares from his school experience... it was a time of difficult healing for us.  This winter has brought a much lowered frustration threshold - when the OT told us last month to "get that kid medicated" because he is reacting in such a way we cannot see any triggers, and he is getting violent...

I have always argued that the Holidays are VERY difficult for him. We go from SCARY Halloween black & orange, to Thanksgiving travelling (it is his grandfather's birthday) and immediately into new music on the radio and Red & green in ALL the stores.  The TV shows change, the radio changes, the stores look different, the classroom schedules are TOTALLY disrupted (not as big a problem for us now)... I can understand where he'd be NOT OK.  And the more I reached out to the Autism community, the more I saw that this was pretty common behavior.  

I do also think that with my son's "extra sensitivity" that the general emotional agitation of the season is a problem for him too.  Everyone you meet and interact with is emotionally charged, one way or the other, over upholding or creating traditions, or helping others be happy, or religious zeal... I can only IMAGINE how overwhelmed he must feel from all quarters, ALL the time!!!!  That was part of why we took off and road tripped - it would only be us, trapped in a car, driving across an empty dessert...

So I decided to strive to keep things "normal"/ "ordinary" at home, to just let this be the place it is - the place where we all just let it go and be our odd selves, where we find ways to live together as we grow.

BUT - my daughter's birthday is Christmas day...
So we really CAN'T ignore it!!!

So I hit upon this idea last year.  It sorta worked, so I am gonna try it again this year.  I find it takes a while for things to kinds gel into a workable tradition...

The year I froze the tree to the dog's bowl, I just cut a tree out of wrapping paper, and we tapped it up to the wall, and stickered the holy bejeezus out of it - so we could have a place for presents.  The whole big paper (and stickers) kept falling down - there is just not enough tape in the universe, people...

So last year we decided to put our tree up a little at a time... with paper hands.  We cut out a few hands (ours) every day, and taped them up in a BIG triangle, and prayed for each hand... either for someone whose name we wrote on it, or for something we needed help with (as I said, it was a healing time for us)...and when others gave us hands, we prayed for them too.  There were whales and dogs prayed for, and aunts and uncles, and sleep and safety...

Our "tree" never got big, but it was enough.  As a matter of fact, I have not taken it down.  Partly because I just didn't "get to it", but partly because, I really do NOT want to lose the memories and prayers we offered, the healing that we found, the kind of ritual and ceremony we built for ourselves that reminds us of the "reason for the season" and all the people that love us, through think and thin - the community that supported us when we were in a dark time...

We will ask our family and friends for hand prints again this year.  And we will make more ourselves, and we will offer prayers of thanksgiving and petition.  And I bet I will be too "lazy" to take it down again... That's gonna be a BITCH to scrap book in about 10 years (or less)...

Sunday, November 11, 2012

Thanksgiving 2012

So.. i thought I would compile all those Facebook posts about what I am thankful for htis year.  I have NOT done this practice previously, and clearly need to be better about acknowledging what is GREAT about my world :)

I TOO need to be more intentional with my gratefulness, so let me start listing:
1) the sun
2)my dog
3)my family
4) my friends
5)ideas/ thinking
6)peaceful transfer of power
I think too much to try to explain these things...

ok - I take it back - HERE is what I am GRATEFUL for today:
I do NOT have to listen to the news or radio or whatever else and be bombarded by FALSE news... I have the right and ability to let the voting ACTUALLY HAPPEN before the counting begins - to believe that NO amount of "exit poll" surveys or media hype drive this elective process - WE, the VOTING CITIZENS do - and the answers will JUST HAVE TO WAIT

Today's gratefullness is for....
And I don't just mean the kind lived daily by my father & other police and military personnel, but also that gonadular fortitude that empowers people to speak their personal truths, or to forge new paths for themselves and their families - the COURAGE to walk out of an abusive relationship, the COURAGE to go to the dreaded dr appt, the COURAGE to try new foods, the COURAGE to get back up on the horse, the COURAGE to cling to faith in the malestorm, the COURAGE to reach out for help, and the COURAGE to gift help to others..
Thank you, God, for COURAGE - mine and other's

I am blogging about my knees, and realized i have never had the chance to THANK those who stopped on Magnolia Ave in August 1994 when they saw me fall and not get up, who went door to door along Magnolia to find a house that would call 911 for me, who stayed and watched the dog and KIDS with me until my dad showed up... I am SO SO SO thankful they had the COURAGE to act and assist when the need was great, even a stranger at unknown risk to self (Rusty- dog- was a 200+ lb malamute!) I am humbled and shammed that I did not get to follow up with them. THANK YOU to everyone who has the COURAGE to step up in emergencies!
large plastic drink cups
I was gonna get all philosophical again, but realized how many of these i have and figured I needed to acknowledge. they are awesome bath toys, good for washing babies & dogs, just the right size for my kids to carry but hold enough to be useful in only one trip, excellent for getting water in the dog's bowl, essential for long road trips, act as a dog's water bowl in a car cup holder, and easily replaced (except for the beer/ rush cups we still have from college) We REALLY do have A LOT of them....

for today - thankful for HUMOR!!!!!!!!!!!!!!!!!!!!!! or all children would die suddenly...
Today's thanks: CONNECTIONS
my fortune cookie: Deep faith eliminates fear.
"decide that you want it more than you fear it"

just realized I am one "thankfulness" behind...
so I add: phones. I would be SOOOOOOOOOOOOOOOOOOOOOO lonely without them!


HILARIOUS pics on Facebook
While this may seem shallow - I cannot emphasize to you how INCREDIBLY important it is to know that not only am I NOT the only person who finds that funny, but even when I am picking literal shit out of the carpet or finding our most valuable possessions chewed and broken, or wanting to melt into the ground with embarrassment as my child licks windows at the library - there is SOMEONE out there SOMEWHERE who has a pic that can make me laugh until I have to pee.. and it WILL be OK again...
chocolate - it saves lives everyday...
I am behind on my gratitudes and spreading holiday cheer... because we have been with the in-laws all week watching my mother-in-law at the hospital. While it is rather unclear exactly what ails her or how to resolve it, what is clear is that she is in IMMENSE intolerable pain. At this exact point, while the family remains hopeful that she will come home, the conditions of that return are unclear. It has been a blessing to see us all come together and support one another, but please keep My mother-in-law and her immediate family in your prayers as we face a time of transition... I hope everyone had a BEAUTIFUL holiday, and shared the sacred love of family this holiday is about...

UPDATE:  My mother-in-law's body is getting very tired.  It is clear that more ails her than we previously thought, things she had "protected" us from for a long time.  She is home, right now, and the family is finding new ways to support her and each other.  She looked at my son and recognized him as her own (my husband).. which is as it should be.  She knows her own children and grandchildren, they trigger her memory the strongest, but she is very tired.  She is fighting to stay in her body, and we try to help in what ever ways we can... and pray for her peace.  I hope everyone had a splendid holiday sharing that sacred family time.

Wednesday, November 7, 2012

On Dis-Ability

This is both deeply personal and highly philosophical....

And it may ramble because pain meds are good...

SO I went to the Orthopedic doc today.  While this may seem innocuous, it is in fact VERY, VERY traumatic for me personally.  I will give you a brief medical history to explain – here’s what the doc got:

I have experienced patellae [kneecap] dislocations since infancy. At age 7 I had PT [physical therapy] on both legs.  Dislocation continued at a frequency of about every other month (where the knee cap would return to it’s appropriate location without assistance), and a significant dislocation every year or so (knee cap would be dislocated for several seconds, most times I was able to relocate it by adjusting leg position).  At 18 yo I had a severe dislocation, required ER, demoral [sp?], and medical assistance to relocate.  In 1995 I had bilateral patellae realignment surgeries on both knees.  Meaning it was an 2.5 hr open surgery for each knee, the doc told me he “lengthened” the tendon on the exterior of the knee, “tightened” the tendon on the interior of the knee, and used arthroscopic to “clean-up” arthritic damage under the knee cap.  In 2000[ish] I developed intense joint pain in my whole body. Orthopedic evaluation at that time told me I would need both joints replaced, but was not old enough.  In fall 2011 developed significant swelling of the left knee, had 6 weeks of PT that focused on my IT band.  In August of 2012 I developed a “catch” after repetitive motion in a squat (teaching swimming) there is a “glitch” that prevents the knee from straightening, is relieved by pulling foot vertically to butt MOST times.  In lower exterior of knee a spot gets visibly large, is SENSITIVE to touch, but “glops” back “into place” when gentle pressure is applied.  An upper interior spot “twinges” with walking occasionally and leg loses ability to support weight.

So… that IS the short version.  What this doesn't include is: that my very first memories are of the pain of dislocation, playing in a restaurant parking lot; the nights the weight of the blankets would trigger a dislocation; the tag games I didn't and don’t play; the fear to go to middle school PE because it dislocated kicking a soccer ball in the first month of school; the ice and anti-inflammatories and watching others play and choosing not to participate when asked; Looking into a man’s eyes begging him to call 911 to help me after just 3 weeks at college; The year between the Big Dislocation and the surgeries spent wearing ONLY skirts to hide HUGE metal braces, staying alone in my apartment so as to avoid ice; the 12 weeks spent in one summer TOTALLY unable to get my body into the bathroom without assistance from others; the 3 years of PT after double knee surgery to walk again; walking down the stairs backwards at my college graduation, still unable to be “normal”; the nightmares that have plagued me of the pain or nightmares of people making it dislocate to punish me; the sensation of a crow bar trying to pry open my knee when ever a storm front moves through; the attention and care I give to every step, every day to be sure I am not twisting or unstable; scaring a group of Brownie Girl Scouts because they could hear my knees as I crossed the room; the inability to run to catch up with my kids– and the FEAR…

There have been times I am SO frustrated by my “lot”! BY GOD! I look normal – there is NO PROBLEM – umm... until there IS – and then it is MAJOR.  I was an athlete – a swimmer – in high school, because it was the ONLY sport “safe” for me to participate in.  I absolutely LOVE to dance – but I MUST be right next to a wall to support my body, and concentrate on not twisting.  Gained a bunch of weight after the surgeries – have NEVER been able to loose it – it hurts too much…  one leg swells, so I use the other harder, and then it swells, and then I have to sit out for a few weeks, and then I’m even stiffer when I try to exercise again.  MANY people have said they do not believe me that I have this problem, or that I am exaggerating, or that I am not doing enough to treat it. It’s like an invisible issue, until it requires IMMEDIATE assistance… - but even then – if the dislocation was fast, they didn't see it, they didn't feel it, so did it happen like I said?

And the FEAR!!!!

The Big Dislocation was awful.  I was 18 yo, end of my freshman year of college, was home [CA] walking 4 children ages 11 – 5 yo to the local park with my 200 lb dog. I was sort of babysitting them while our folks visited.  I tripped stepping up the curb, dodging the leash… and fell.  My knee cap was on the back of my leg.  I tried to push it back, no go – I tried to bang it back, no go – I hit a wall.  The oldest kid offered to run to my house to get my mom [she did NOT live in our neighborhood - but she went].   A man showed up out of no where, asked if I needed help, I told him yes, he asked if he should move me.  I THEN remembered my first aid training and assessed the scene… I was by a 4 lane major thoroughfare in Southern CA with 3 children under 10 and one 200 lb dog, my head over the gutter, unable to stand or move, the cars were passing frequently… the kids & dog just watched me.  I suddenly realized I could NOT protect them from this stranger, & I WAS RESPONSIBLE FOR THEM!.. but also that if I got excited, panic would ensue… so I asked him NOT to move me, but asked the kids to stand away from the road, saw the dog sit.  Then a lady (another stranger) showed up.  One of the 2 adults told me they had seen me fall and not get up, so stopped to help.  I told them I needed 911 help.  This is prior to cell phones, so they went door to door in a residential neighborhood looking for anyone home in the middle of the day to call 911.  Then I remember my dad showing up – he took the kids & dog – whew! – but the leg was still dislocated, unmovable.  He had a fleeting moment of shock/ worry on his face – so short I wasn't sure until later – but he is a cop, he’s peels dead bodies off streets, he schooled himself, and asked me if I could fix it.  I could not – I felt horrible for disappointing him. Then ambulance arrived. The ONLY time I screamed is when they lifted me to put me on the gurney.  I spent what I later learned to be about 1 hour in stop-and-go traffic on an LA freeway to get to the hospital holding my leg on a splint, could NOT put any weight/ pressure on it.  They shot me up with demoral [sp?] – and I then waited.  I heard the woman in the room next to mine throwing dishes, fighting with nurse – recognized it as a diabetic emergency, and waited.  They finally came in a team, and I only cried when the joint went back in place.  I went home.

The days that followed were ALL about fear.  I learned how afraid my dad was, how when he first saw it, his experience with car wrecks told him I would need immediate surgery to correct.  How my mom was SO scared waiting to get to the hospital, waiting with me in the waiting room, to see me SO souped up on demoral [sp?] – and it is GOOD SHIT, BTW.  How terrified the 11 yo was thinking that it all depended on her, and she wasn't sure where I lived, and she got lost once, and felt INCREDIBLY guilty about it, about how the littles were TERRIFIED that my leg would always look like what it looked like when I left them, about how the scream to get on the gurney was giving the littlest nightmares that I would never be OK again.  I HAD to go visit them to reassure them, see their fear, meet it. They told me I needed surgery, but I left for college in 2 days – to VA.  It would mean missing a semester of the college I had worked so hard for - the fear of losing my education.  And while the pain was bad, what SCARED me was that I was responsible for those kids, and could NOT have done anything to protect them.  What if the dog had run into traffic? He’d have been hit for sure – what if one of the kids went to get him?! I would have watched a child die.  What if the strangers were NOT good people, I could NOT have protected them.  It was HORRIFIC to look in the eyes of a 5 year old, have them ask if I could stand up and walk home, and I could NOT.  I carry SO much guilt for scaring them!  And they were not the first or last that have carried that terror with me, for me…  What if it were MY child looking at me, at mommy, and I had to tell them I was broken, they had to go get help… and I waited – had the surgery the following April, so had months to grow and feed that fear.


The next years were even harder… you had the surgery! The problem is addressed! WHY DO I STILL HURT? WHY IS THIS SO HARD?! PT SUCKS BIG FAT WADS OF HORRIBLE ICKYNESS!!!!  A LOT!  My dad talked to me about the courage to see PT through.  You cry ‘cuz it hurts, you cry ‘cuz your frustrated with your body, you cry ‘cuz you can’t be the “you” you were, you cry ‘cuz you don’t see an end, you cry just ‘cuz… fear turns to anger: you push your body too hard too fast, and cry some more.  You feel left out and sorry for yourself, and cry some more.  You get angry that everything takes SO much more time & effort, and you cry some more.  You get angry at how much of a burden you are to those around you [room mate, family, store clerk, EVERYONE], and cry some more, you get embarrassed at how obvious your need is to everyone under the sun even if all you are trying to do is walk across the yard, or buy groceries, and you cry some more.

It was in this time that I decided that EVERY BODY has a disability of some kind or another.  

Some are OBVIOUS, some not, some show up occasionally, some all the time, some in their bodies, others in their minds, others in their emotions... we ALL have scars that HURT a lot and have needed or will need LONG times to heal – scars that are solid enough not to tear when hit again, but still make every step painful, that we are still ginger about when we go through our daily lives, that are integral to who and how and why we are…  That make us cry when times are dark, and we work hard to live with E-V-E-R-Y S-I-N-G-L-E D-A-Y.

I came to terms with the fact that I might get some better, but not “all the way” better.  Once lost, it is NOT regained, so I needed to focus in new directions, look for lessons and positives.  I sought out those things that made me stronger, not weaker, I looked HARD at who I wanted to be, and HOW I wanted to be, and I tried to go there.

I was TERRIFIED when a new doc told me I would knees replaced 5 years later! WHAT?!  I just didn't know it was that bad… I cried again.  I told my husband and my self to be ready for the day that I would lose the ability to walk. I was 25 years old, told that I would just “have to suffer” until technology caught up with my needs and replacements lasted longer than 10 years.  The original surgeon confirmed the diagnosis, explained how all that hard work had been a “stop-gap” measure to buy me time.  I cried some more, and looked for new lessons again.

I got married, got a job, started a family, VERY carefully, on MY terms, and we have been “successful” despite my “disability”.

Then we got into the Autism diagnosis, and I became an experiential educator, teaching swim lessons, hiking hills; I got certified to teach High Ropes, life guarding and canoeing… after age 35.  Every fall when the cold brings back pain, I am afraid AGAIN that I will NOT be able to work next spring…

But the rule of joints is “use it or lose” – move through the pain or you won’t move at all.  The rule of pain management is “moderation” – be sure you don’t build up a tolerance so you have to increase dosage or strength.  So I continue.

One thing that STRUCK me when we got into dealing with Autism, and treatments and schools and advocacy is the “Person First Language”.  It echoed what I had decided earlier – that the person is a PERSON with strengths (abilities) and weaknesses (disabilities).  The phrase I CANNOT forget was:

“Disabled is the only minority that anyone can join at anytime in their lives.”

Accidents, birth defects, time itself, all of this put together… we are all VERY likely to be a part of this “minority” at some point in our lives, even if  [HOPEFULLY] temporary.

So what IS disabled?

I am not shortsighted enough to believe that we can ALL be “disabled” in a political sense – in the ADA compliance sense – that ALL Walmart's need enough wheelchair-carts for EVERY person who could possibly come in and need one at the same time – in the sense that NO building should EVER have stairs – getting through daily life is gonna be “rough” and difficult for everybody… so if that’s the case, shouldn't we assume it’s SUPPOSED to be that way?  And part of the whole “get the waiver” thing we have issues with is the financial part – the government just cannot support the growing number of people that need it.  If our son IS “high-functioning” and we are able to homeschool him by milking our parents and friendships and offer insight from our OWN experience, shouldn't we?  Others need that assistance more than us, right?

But does that make his Autism “less”?  Is my lifetime fight with my knees “less” than diabetes or depression?  ISN'T “disabled” actually “Differently Abled”?  CAN’T this be an extreme expression of the variability of humanity?  SHOULDN'T we be trying to embrace the diversity, learn the lesson?  WHY CAN’T we just believe that we ARE supposed to be different from one another? 

How "differently abled" does a person have to be before they are "disabled?

There are certainly times when I am UNable... when the weather pain is so distracting I can't function, when the choice to participate create the opportunity for others to suffer too, when doing stairs and carrying heavy loads will mean I cannot last the day, when I've taken all the meds I can and my body still hesitates to get up. I carry a crutch and a cane in the car, use a walking stick on ALL hikes, go VERY slowly (holding up others).. and those times I AM disabled.

But other times, I am VERY able.  Academic work? I am SOOOOO there!  Public presentations?  NO PROBLEM.  I have compensation skills: I can't catch up with kids or puppies, so I am LOUD; they ALWAYS come back [eventually].  I have learned to turn parts of my body "on" and "off" (like sitting still for the shots, or not tightening the inside thigh so it pulls on the dislocation).  Many days my body is NOT my friend, but I work hard to be self-aware - to share wisdom since I can't share physical activity.

I always end up coming back to the Bible verse that says we are all parts of the Body of Christ.  THAT makes sense to me, since every cell in a body is specialized.  A Team needs everyone to play a different role to be sure every job gets done.  A Family composed of all the different personalities and contributions of every member.  A System needs more than one component as well as multiples of a component.  A Spectrum requires the ends as well as the middle – removing the ends only makes new ones.  In the words of Kenny Rogers, “Every hand is a winner, and every hand is a loser” – there are multiple sides to every story.

We just can’t all be in the same place at the same time…

So WHAT is disabled?

UPDATE: That appointment? I got cortisone shots in both knees because the cartilage is gone - I am bone-on-bone under knee caps in both legs.  We will continue to "buy a little time" - IF cortisone and arthritis treatments work for me.  He reiterated that I WILL need both knees replaced, sooner than later (within 5 years or so), but that I am lucky that my structure is not severe enough to require breaking the tibia (shin bone) to heal crooked so that the joint is straight.  So how "disabled" am I? or will I be?

Tuesday, November 6, 2012


I have 2 "I might be crazy" revelations for today:

1)TIME is the apple from the garden of Eden - the "fruit of the tree of knowledge" that makes us "God-like"

2) What if Facebook & twitter are expressions of the "collective consciousness"?

That is all...

Monday, November 5, 2012

On the Brain - to the extreme

So this is a reflection of my musings, NOT a research paper, so while I will certainly "cite my sources", I am NOT going to avoid writing this post because I can't find the exact place I read that info...

I have been reading a book about Brain-Based-Education lately - a book written for teachers by a teacher who was also a neurologist, and it has reminded me of several important points.

1)Brains "chunk" - meaning that a memory is created and stored as a "chunk" of information, not each little piece isolated in the head.  THAT is why Graphic Organizers work - because our brain automatically stores information in charts and Venn diagrams in our head.  I think this is particularly important in the "thinking in pictures" conversation started by Temple Grandin.  I know that even as a kid, when ever I am confronted with the need to locate a piece of information in my head, I actually visualize the page I saw it on - which puts it in with the "chunk" of information it "goes with" already.  The book also talks about "chunking" in terms of sensory input: one remembers a food's smell and texture as well as appearance, and usually the context of the food (celebratory dinner or school cafeteria).  I am not entirely certain why my head is holding on to this as Important, but I just think there is an association to be made somewhere in the SPD discussion...

2) All information must enter the brain THROUGH THE SENSES.  While that seems pretty clear - it again leads me to really wonder about the effect of SPD on function and global brain wiring. Is the "different operating system" that we see in our ASD kids what creates the SPD, or is the SPD what creates the "different operating system"?  I don't really know if this question is relevant, unless we are looking for the cause-effect relationship that we can reverse, or at least... monitor?  I feel like there needs to be MORE looking at this senses - brain wiring relationship.

3)The author makes it clear that METACOGNITION trumps brain-based-teaching.  So, regardless of how much empirical data is collected, of the statistical evidence we have, of the trends that we see playing out - how well a person knows their own mind is more important than any effort on my part to meet the data.  The best way for a student to learn is by the student understanding their own thought processes, seeing their own trends, knowing "what works for them".  Ultimately, this says to me, that if the person is just different, there is nothing you can do about it! - they HAVE TO teach themselves (which is exactly what Montessori says).

ALL this brain-based-learning information keeps mixing in my head with what I have read about Nuero-feedback/ Bio-feedback.  What I read indicates that the process is hooking a person up to see their own brain imaging so they can consciously associate sensory experiences with certain mathematically measured "states of mind" - in other words the "patient" can see directly in the monitor when their brain-waves are within a certain range ("normal") or what parts of the brain light up (get used) to perform a task.  I think the idea is that by seeing how your brain works it gives you the opportunity to better control it - to "make" areas light up or brain waves be within a certain range when you "feel" a certain way in your body.

Is that Metacognition?

I also had the opportunity to take an all day seminar on mediation with the Smithsonian recently.    He had a lot to say about meditation's affect on the brain.  I believe his effort was to "prove" that mediation "works" - but ultimately all that is proven is that the physical shape/ construction of the brain IS altered by meditation - specifically the parts dealing with sensory awareness and attention to detail.  I think reading into the studies he cited also shows this metacognition piece, that a person in "control" of their mind processes can decide when to turn them on and off (like when to socially engage or linger in anxiety)...

And now I am caught in a conundrum:

If the senses are the window to the mind, and we are saying the senses are catching a reality different from the rest of us for "normal" people, then how do we know if we have reached the mind of the autistic person?  Do we have to actually alter the mind of the autistic person to the point that we can recognize it?  As in, do we need to make the ASD person less alien to us in order to recognize/ respect them?  And should we be changing them to recognize them? If they are, in fact, a different operating system, if they are, in fact, wired so completely alien to us that we have a hard time recognizing them, then shouldn't we respect that they were divinely created so?  If God "made them different" - whether by disease or genetics - how much are we supposed to leave that alone?

Is THAT where the spirituality comes in?  That we are "communicating" - connecting - through LOVE instead of our physical bodies?  Instead of our physical bodies?!  THAT sounds pretty darn close to what I am hearing postulated by the 3 psychics I have found on Facebook that "claim" to communicate with ASD kids for their parents.  That's 3 different people, who came to this through 3 different journeys (NOT through each other, as far as I can tell)...  I have heard the claim that ASD people ARE aliens on their own bodies (from a higher "frequency" or "plane"), have even felt that way numerous times about my own son.  I look at him often and just know that he is truly beside himself, not in himself... like he is manipulating his body through a marionette...

At what point DO I cross that thin line between crazy and genius?  Does only HISTORY get to prove who is crazy and who is genius?  Thomas Edison, Leonardo Da Vinci... those guys were crazies of their times, and seem geniuses to us...

Dear God, what if that IS what this Autism Phenomenon is all about - about pushing our collective envelope of crazy so that when history unfolds we can see the geniuses!?  I am NOT sure I want to be around for that!

BTW - my son has claimed in several meltdowns in the past month that the only thing that matters is who will live or die at the end of the world...  He uses this to explain to me why he does not need to eat with a fork or wear pants or touch the cart at the grocery store - what ever direction it is at the moment he does not deem important enough to follow.  I sure hope he is WAY off on this one...

I am secretly hoping that someone will respond to this and demonstrate the Great Flaw in my reasoning .. PLEASE