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

dragon pups

dragon pups

Sunday, February 10, 2013

On Choice & Autonomy

One of the topics DEEPLY explored in experiential learning is choice.  It is not only the endless discussion of intrinsic vs extrinsic motivation that all professional educators debate, it is a safety issue on the challenge course.  As I understand it, ALL challenge experience facilities (ropes courses, team building, zip tours - for education, therapy, or fun) operate under the "industry standard" of Challenge By Choice.

A quick definition/ explanation:  It means that participants are asked to choose to be challenged.  This practice requires that the facilitator/ teacher understand and expect that every single participant not only owns the choice to participate, but also owns the choice of how much they will participate.  In essence, we are saying to participants, "you will get out of this as much as you put into it."  While this is a pretty universal truth, on the challenge course it means that we (the "leader"/ facilitator) recognize that these activities will be challenging (invaded personal space, fear of heights, etc.) and that it is the participant's responsibility to participate (to actively play games, to follow rules, and to make a sincere effort to complete tasks).  In practical application, it means that when I ask a participant to touch their toes, they will make an honest effort, and if the participant does not want to jump off the telephone pole, I will not push them off.

So the discussion of choice becomes a safety issue, a liability issue.  The participant paid to climb up the pole, that is the product they requested.  But if we force them to, we are violating their personal soveriegnty - opening ourselves up to a lawsuit for emotional damages, and possibly physical damages if they are so defiant they refuse to wear/ use the equipment correctly.  This is particularly problematic for school groups.  The education system is set up to demand and expect compliance.  Period.  The school has spent good taxpayers money to bring this kid out, and by God (I guess, not God) that kid better learn something!  The school is investing in the challenge course to do what the classroom cannot - to BE the catalytic event that instigates change.  Particularly for "at risk" youth, the whole expectation of the customer (the school or therapist - the "grown-ups") is based on a change of behavior expected to be seen in the youth (the kid will start being nicer, be more social, "grow up", etc.).

This is a VERY deep and concerning discussion.  I mean if you paid me to challenge you today, then I had better deliver!  By signing a contract, the school/ group has asked me to be ready for 10 people to climb the wall today.  If all 10 don't make it, do you still get charged?  If 3 of the people you paid for change their mind after looking at it, do you get a check back?  I have to pay my instructor for their time and skill whether you go up or not.  And what did you pay me for?  Did you pay me to challenge you? or did you pay me to climb a wall?  Did you pay me to build your team?  Or did you pay me to experience 4 different elements/ initiatives/ activities?  If  you time culminates in a better repoire(sp?) between team mates, is that team building?  Or will you decide that the team is "built" after you have tested productivity for a month?  If one group discovers ways to support each other's fears (not make fun of the one who didn't go up) and another group learns to analyze their success (how come you all went up) - did they both "build team"?  If you sought challenge, and I help you go as far as you can go, but it is more or less far than others, who's choice is that?  I mean, if the corporation wants to see the team performance improve, do you think that ALL the members of the team need to work on the exact same skill? Or that some would benefit from communication while others may need to practice tolerance?  Who makes that choice?  Is the participant supposed to know what they are bad at?  Does the boss get to decide what each gets to work on?  Am I supposed to asses everyone of them and then lead them to each place/ skill?

The easy answer is that the choice is shared responsibility of ALL those parties, right?

So the hard question: where are the lines?

I am learning more & more about how to navigate these lines every day - on the challenge course.  Working with schools, I have to honor not only the dictatorial compliance expected of students, and the personal growth of each student, and our liability as a facility - I have to play that fine art of pushing a little hard or a little softly, pleading, cajoling, daring, and inviting the student to participate, and then honoring whatever God may have led that child to see/ learn while emphasizing what the school expects them "to get out of it" (learning goal).  I get better all the time, but ultimately, what I am doing is LOVING each child - trying to listen with my heart and act with my gut feeling.

In this way, I see what I do to teach as the same thing I do to parent.

SO now - the question of CHOICE and AUTONOMY...

In dealing with autism and SPD - the "treatment" is usually about choice - providing the affected person the ability to control their environment, or their choice to be in their environment.  Always provide an exit.  The more choice and control the autistic/ spd person has, the less meltdowns they will experience - or at least they will be better equipped to cope with their meltdown.

But how much choice do they ACTUALLY have?

My Aspie chooses to eat tuna fish for breakfast, and occasionally lick windows, and wear soft pants, and take 4 showers a day, and argue when asked to write, and learn more about dinosaurs, and tell me about Star Wars.  

ARE those his choices?  If I allow him access to tuna instead of eggs, is it MY choice?  If I discipline him for licking windows, is that MY choice?  If I let him watch Star Wars, is it MY choice?

I have been teaching MANY years, I have seen kids who walk all over their parents, kids who are seeking an adult to stand up to them and show them limits.  And I have seen parents who walk all over their kids, never allowing the Gift God made them to shine through.  As I write this the "answer" seems easy: moderation/ balance.  Ask the kid to try to sport, even "make" them complete one season, but don't guilt them into it.  Allow the kid to explore fashion, but not "dress like a whore" (or wear a bathing suit to church, or go shoe-less at the grocery store).

Somehow it seems more complicated with the autistic child.  They are often so unrelatable - meaning I (the parent) have trouble finding the window through which to relate to them) that I MUST start from the premise that behavior = communication - it's ALL I've got.  So when he licks the window - WHAT DOES THAT MEAN?  Am I supposed to correct him? Or observe long enough to figure out what he is "seeking"?  In all honesty, it doesn't bother ME that he licks windows, but most people I mention that behavior too are grossed out - so should it be a choice I take away from him?  If he is arguing instead of writing, there MUST be a reason.  So does it hurt him? Or is it just hard?  Should he learn how to do it anyway?  I mean don't "regular" people learn to do things that hurt - like pluck hair/ rip off bandaids? (or wear high heels)  So should I respect HIS choice to avoid pain, or MY choice to equip him with a skill that will protect him as he ages?  (I mean, technically, I have a huge callus where my pen rides, so haven't I been hurting myself for years to write? Can't he "just" do that too? Should he have to?)  

If the answer is "moderation/ balance" and his personal middle is not the majority middle, or the "like-group-statistical-analysis" middle, then IS it balanced? and WHO's choice is that!?   I mean if a kid is making choices to "test limits", shouldn't I make the choice to show draw the line?

Where is the line between "It is the parent's job to equip and guide a child into adulthood" and "God made you [child], so I just need to let your light shine"?  Where is the line between my responsibility as a parent to help you and my responsibility as a parent to honor your giftedness?  How do I know how much choice you NEED and how much choice I need to curtail?

DOES a person need autonomy?  Or does a person need certainty?  HOW DO I FIND THE BALANCE?

Is this REALLY a different parenting journey than "typical" parents have?

ACCT Conference

So, I have spent the last 4 days working with professionals of the challenge course industry. I have learned SO very much and am overwhelmed with thought.

1) THERE IS A WHOLE INDUSTRY DEVOTED TO THIS!!! Crazy!  This is the 20th anniversary of their professional organization, so when I was little there were already enough people doing this work to warrant a professional organization.  At this conference they honored their founders, the men (and a few women) who have spent a life building and operating safe places for people to experience life changing challenge.  It was an interesting collection of people.  Therapists who use the challenge course experience to trigger a change of perceptions,  builders who create new ways to honor the safety of the trees they build on as well as ensure the safety of the people who use them, educators who use hands on experience to teach science and social skills (theorists on the science of play), the owners and operators of commercial adventure eco-tours, and the scientists who use these tools (like to study rain forest canopies, or neuroscience).  It was practical and theoretical, deeply detailed, and just plain fun.  Classes ran the gambit from tree biology, to coming up with ideas to use new toys, to the theory of therapy.

2) There are several theories about human dynamics/ relations.  These theories provide a vocabulary, a framework, within which to discuss and think about how people interact.  Naturally, I am deeply interested in these theories as they relate to the autistic mind/ brain.  These are windows through which I, as a facilitator, am supposed to identify strategies by which I can guide/ lead a group to an outcome (like teach science, or help them find kinder ways to communicate, help them identify their personal motivations).  There were several that I specifically explored in depth.  One is a theory about Drama & Compassion, explained as a triangular model that seeks to identify the roles people play in relationships.  Another was an exploration of the fight or flight response, identifying 5 topics that alleviate or trigger the response: status, certainty, autonomy, relatedness, fairness.  One was the ETB model used in therapy: a triangle between emotion, thought and behavior in which one always affects the other two.  Some underlying themes that all of these touch on are choice and uncertainty.  Choice and uncertainty are heavily involved in the discussion about intrinsic vs extrinsic motivation/ value and how do we know where we want to go, or how to get there, or when we arrive.  Even as I type this, my head has to sort through the pool of information, so this is a very short summary, with LOTS more depth addressed in each of these theories.   These are really philosophical discussions on the nature of human-ness - and my head is wrangling with the inclusiveness of these theories.  These professional educators and scientists have worked to label Universal Truths.  My head seeks to identify if Autism and Asperger's fall within these Truths.  I start from the place that obviously autistics/ Aspies ARE human, so are these truths comprehensive enough to include them?  But there is the underlying tension/ thought/ fear that if these Truths are not inclusive of autistics/ Aspies - is that the root of the prejudice they experience in the world?

3)Once again, I learned that God puts you where He needs you when He needs you to be there. The very first day I was asked why I was in a particular class, and my answer was, "I have the nebulous gut feeling that you are going to say what I need to hear".  It proved True, not only for that class, but for most of the ones I took, and for the time outside of class.  I gained insights into my childhood experiences assisting event organization.  I didn't know how much I already knew.  All of these discussions about "human-ness" lead me to deep thoughtfulness about parenting - those specific questions like, "Am I doing a good job?" as well as those nebulous questions like, "What should good parenting look like?  How do I build a new human? Or should I build a new human?"  One of the gifts of this conference is that I was able to explore all these concepts with other people who are also parents (by no means ALL of them - there were plenty of young adults looking to build their skills, but also many who could bring their lifetime of experience to the their insights).  One gentleman in particular allowed himself to spend nearly 2 hours talking to me about how these discussions about choice and certainty relate to parenting (not teaching other people's kids, but my own).  I didn't find any answers, but I kinda feel like I am finally asking the right questions.  I know that I am an Auditory Learner, and talking it out was what I needed - but it is so hard to find a willing audience sometimes ;) (too much "little professor" syndrome in me, I guess).  There was more than one class that I left physically shaking because I was SO connected to the information shared, the "magic of the moment" so intense.  MAN, did I ever need to be exactly where I was!!

4)  I remembered/ learned/ found out how much of a Westerner I am.  I didn't look out the plane window until landing in Vegas.  The jagged mountains, the stripes of earth color, the clear lines of civilization (plumbing) were painfully familiar, reminded me of being younger.  They seemed both fresh and familiar to me.  I was so happy to have dry warm air, and to drive the car on the freeway (even if only 10 miles), and to eat El Pollo Loco and see See's Candies!  It was renewing to touch the pieces of my past.  So odd how the past touches the future...  I am a Western Girl - and it has taken a long time to admit that!

5) I also learned that most airports nickel & dime you for WiFi, but Vegas gives it free.  And that getting through security in Vegas is a B!#@$, so I better get something free! - especially since the only plugs/ outlets are on the floor and I have had to spend 4 hours sitting on the hard floor - the bathrooms in Vegas were not as clean as Nashville or Dallas/ Ft. Worth either...

Monday, February 4, 2013

On [My current] Self-esteem

So, I am guessing this is as much a reflection of how I see the Asperger's in myself as much as an exploration of it's blow to my confidence...

I had a DRASTIC miscommunication this past month with another mother in my Girl Scout troop.  I inadvertently hurt her feelings VERY badly, and it has just left me shaking.... 

PLEASE NOTE: In True Aspie fashion, I am probably going to share too many details here. Understand that my effort is NOT to embarrass anyone [but myself] but to try to explore the reasons and effects of the miscommunication...

Thinking Day in Girl Scouting explores scouts around the world, since it is the anniversary of the day that Lord and Lady Powell (brother & sister) founded the world wide scouting movement.  In most locales, troops get together and share information about other countries - an academic pursuit, but also a time to try new foods, new costumes, new crafts... just explore information.  My troop has decided to explore Spain... largely because I suggested it.  Which I did because I have been there and have stuff the girls can touch and see from Spain.  There was a democratic vote from a long list of countries offered by many girls and adults in the troop... but Spain was selected.  I am the newest leader in this troop, so I am "cool" right now, and I will admit that this may have effected the mindsets of the girls...

Another mom in the troop has traditionally taken on this particular project/ event, and has done a knock up job at it, by all accounts.  She does NOT have familiarity with Spain, so I sent out an email to her and the main leader about Spain.  The problem, of course, is that I know too much, have trouble narrowing it down, and am passionate about my knowledge - WAY too into it, and see it connected in so many ways... As I told them - I think in "circles", not lines, or even outlines, and I have a VERY hard time telling what the Key Points are because they are ALL key to me... every detail is attached to another, to create the whole picture.   What do the girls need to know about Spain? EVERYTHING! So I wrote them a summary, from a couple different view points (cultural icons vs historical themes vs locations)... and asked them to help pick out what they wanted to stress.

The other mom checked her resources too, and brought to my attention a couple details I had forgotten - like tapas.  So I responded to her that she was correct, but then elaborated the definition of tapas, trying to validate and deepen the discussion...

Unfortunately I used the same "voice" I speak with - except that the typed word just does NOT have enough italics and caps and bold to communicate the connotation my head is trying to impart.  

So I wrote some words in all caps...

And it was taken as yelling, as an insult to intelligence, as an affront to her attempt to add to the conversation...

And that created a bad personal politics situation for the whole troop and the whole event - because she decided that the best way to deal with my mannerisms was to withdraw.  I would like to validate her course of action.  The American Way is ALL about being able to withdraw from the game, about being allowed to go separate ways with out malice or violent repercussions... I often tell students that what is Great about America is that EVERYONE has the right to be wrong - we do NOT have to agree. 

So, I was wrong.

And it came to tears.  I insulted her effort to help with the one event all year tat she volunteers to do.  It was hurtful.  She went to the head leader, and I walked in on the conversation on accident, and it was all made aware to me...

And I was hurt.  I was, and am, SO VERY VERY sorry that my enthusiasm was misunderstood, and came across as threatening!  I DIDN'T MEAN IT THAT WAY!!!!  

So, I did what I have always been trained to do... I assumed responsibility for the misunderstanding, the miscommunication.  I told her that I was sorry, that I have found my enthusiasm to be overwhelming and threatening to others before and that I just forgot myself and got carried away, that I by NO means meant "yelling", and had truly intended to validate her research and contribution.  

She looked to me still upset...

So I continued talking...

And I explained  that I have an Aspie kid, and I must be Aspie too, and that I clearly needed to work on the same skills I was trying to teach my child...

And the whole conversation changed.

She too has a Spectrum child, older than mine, high functioning, like mine... but in that moment her body language changed... I felt like she diagnosed me, and dismissed me instantly.

I felt like I had given her a weapon to use against me.

Now, being "Aspie" - it is possible I TOTALLY mis-read this.  Maybe she just felt more comfortable, but I felt vulnerable.

And my confidence is CRUSHED.  How can I teach my children what I apparently cannot do?  How can I arm my children with strategies that do not work for me?  Am I honestly just too intense?  AM I a threat to others?  Is it really SUCH a crime to be passionate, enthusiastic, intense?

Tomorrow night I leave for a professional conference, a 3 day event, at which I am supposed to represent myself to the "camp" industry.  My deepest hope is to bring the world to see that "camp", that "experiential education" is a LEGITIMATE educational format, a forum that is NEEDED in today's educational environment.  To "learn by doing" would help ALL students, but ESPECIALLY SPECTRUM STUDENTS!!!!  I often tell "camp" people - all those kids that "fall through the cracks" in schools, we can "CATCH" them when we take them out for team building activities and challenge courses!  

But I am also DEEPLY afraid that my enthusiasm will hurt my cause, that my passion for helping those kids, like mine, that NEED  to learn by getting their whole bodies and hearts involved will scare others away...

I am so afraid to "let my light shine" lest it burn the corneas of those who need to approach...

And understand - I do not blame the other mom.  It is possible that she "overreacted", but that is immaterial to the fact that I triggered her reaction...  I did not do what I keep trying to teach my kids to do - I did NOT make the people around me comfortable with me.

And that brings me to question: WHY am I ingrained with taking the responsibility?  WHY do I "make" myself the victim, the trouble maker?  Is this part of the Social Discrimination that Adult Autistics are trying to bring to light?