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Thursday, October 03, 2013


 Celebrating the birthdate of our son John: 10-03-80

John John John



Sleepyhead. Nocturnal fellow.  Shower-adverse, noisy, SPD-expressing boy:

“Aaaaaaaaaaa!!!!”!

“NO!”

“You are not my father!”

Heart-breaking son o’ mine.


Prematurely pushed into this world, your birthing accelerated by pre-eclampsia, you arrived in your good time, sunny-side up, eyes and fists squeezed tight against the bright delivery room lights. Everything functioning just fine, you went back to sleep, nestled in your little crib while coach Kathleen finally went home for a well-deserved rest, pondering a career in nursing and Mom began the long climb back from utter exhaustion.

Why didn’t they mention toxemia in birthing education classes?

Handsome, tall, unkissable, inquisitive, intelligent, kind, sensory-defensive, strong, talkative, friendly, reactive, you were a challenge for our culture’s formal education system. Home-schooled for Kindergarten, because you hadn’t yet, and in fact never did accept the behavioral norm of stopping to use the bathroom when “the call” came.  When you were 3, then 4, then 5, we were told by confident, experienced friends, “Oh, don’t worry; nobody starts school without having mastered these skills.” 

Apparently, they were wrong.

But, you learned to read that year, and never stopped.  In high school, you’d get your textbooks the first day they were available.  Carrying them all home, you’d close yourself in your room and proceed to read them through, cover to cover.  The rest of the school year, consequently, was a drag: the teachers in front of the class saying, in your words, “Blah, blah blah….”  Too bad they weren’t open to the idea of you “testing out” of some classes after you’d devoured the texts.  You’d have done great.  But, it never happened.   WTMC didn’t yet exist. You went to school when you could manage, and as I understand it, rather than attend classes, you spent a lot of time in the main office, fixing telephone and computer equipment for the staff, and sometimes wandered the halls, chatting with the on-site policeman.

When you did go to class, it wasn’t always a good outcome.  We learned from Joe, after the fact, that he was sometimes called from his classroom to “help deal with John.”  For the finale of your second senior year, you actually earned a 180-day suspension for zero-tolerance behavior.  It seems that you were exasperated because the teacher could not get the classroom under control, so you stood your tall self up in the back of the class, holding up something (a pencil? or allegedly, a randomly-appearing screw driver?) as a weapon, and used threatening, “If you don’t, I will,” words.   Oh, John. 

How was the principal to understand your intent? Of course, the school called me to come ‘deal’ with this incident.  “Oh, here we go again.” 

I’d been called to the schools periodically, most of your 12 years of formal schooling, with a possible exception of the middle-school years when you were housed in a self-contained AI classroom, with some very able teachers and aides.

In elementary school, the principal and I worked out a communication system of phone calls: “He’s left home now; you should expect him in 15-20 minutes,” so we could track your progress.  She was worried about your safety. I wasn’t. I knew you’d come home eventually. But the school’s liability for your well-being demanded that she know your whereabouts during school hours. 

You liked being home.  I tried to explain that to the various administrators who ‘punished you’ with in-home suspensions. “Please don’t do this.  It’s as if you’re giving him a reward for misbehaving.  It’s not going to help.”  Well, they couldn’t work out how a student could behave non-compliantly without intending belligerence.

This last day of your public education, the principal pulled herself into an “authoritative” posture behind her desk, and glancing at me periodically while nervously shuffling papers in front of her, informed me what my son had done. You were there with us in her office.  But, when you stood up after awhile and walked out, she was undone.

 “What should I do now?” she asked, looking me in the eye. 

Incredulous, I kindly asked, “What do you normally do in this situation?” 

“Well, we call the police.” 

“So, go for it!” 

Of course, John, you were already with the school officer, walking the halls with him as was your custom. 

Following that incident, you somehow arranged to finish school, by special permission, since you weren’t old enough, in the evening GED program.  With the assistance of a creative, understanding teacher, and proving once again that it wasn’t for lack of intelligence or intention that you did poorly in your high school classes, you aced the GED, finishing in the top 3% of the nation.  You even got a special commendation for that.  Nice work, John. Then, off to Washtenaw CC, and the Residential Construction program.


John, you taught us things about life, perspective, love, patience, tolerance, education, intelligence, ASD, justice, loyalty, disabilities, videogames, ADHD, with or without hyperactivity, homeschooling, public school, private school, the food network, popcorn, biological rhythms, medication, encopresis, friendship, faith, serving others in love, perseverance, resiliency, creativity, thinking “outside the box,” and of course, the four food groups:  pizza, ice cream, cereal and root beer. 

Just being you, John, with no intent to harm, most of the time, you stretched our combined intelligence, resources, energy, creativity, inventiveness, education, strength, faith in ways that threatened to shatter our foundations.  When you fired up, angry as all get-out about some perceived injustice and contemplating harming the perpetrator (us), you scared the begeebers out of me. More than once, I called a help line while cowering in a corner, asking,  ‘Please, what should I do now so that I don’t get hurt?”

“Hide all the knives.”  “Leave the house.”  Oh, my.

But, when the next day “dawned,” sometimes not before 1pm, with unbounded enthusiasm, you arose, threw open your bedroom door, tossed your size 13’s ahead of you:  Crash!       Bam!!!,  and thundered down the stairs, ready to take on the day. 

A tireless, creative problem solver, you were the guy who showed up on time for a neighborhood leaf-raking service project with a rented backpack leaf blower at the ready.  Tools. You loved them.

Bear’s very good friend, you showed him the streets of Ann Arbor, sometimes deep into the early morning hours, his collar tags jangling an amiable accompanying rhythm, alongside your ongoing interpersonal monologue: processing this enigmatic world aloud.

The last week you lived, we’re told that you a rented a mid-size truck, backing it right up to the front porch so you could help a friend move. You weren’t old enough to rent a vehicle; I guess the company never carded you.  A disheveled 6’5”, some people might have found you a bit intimidating.  After cheerfully and ably assisting with the move, continuing to enjoy the Ride, you drove out to Dexter to do some visiting.  Unlimited miles?  Perhaps.

AEA took you out.

My fury at the injustice of it insisted that I hit the road, campaigning against the lack of information about this often unrecognized, highly stigmatized, sometimes, as in your case, fatal addiction. How could the team of professionals who worked with you not have named this, and intervened on your behalf, even after we called a special meeting about the recurring welts around your neck, long before you died.  “Oh, we find nothing here to be worried about, Mrs. OC.  He’s not suicidal; it’s ‘just a sexual thing.’” 

Nothing to worry about?!  Wrong again.

I could imagine making impassioned speeches to ..? “groups.”  But, the energy for that has not yet surfaced.  I can begin to write about it though, apparently: twelve years later.

Here we are.  And, there you are: safe now.

I love you, John.  Always have and always will. 

God rest your soul.



Tuesday, September 10, 2013

DERF

Derf: the time/place between what used to be and what isn't yet fully formed/happening in one's life.

Derf occurs in periods of recovery; before/after a big move; before/after a new job, relationship, etc. Perhaps you've been there?  Perhaps you're there right now.

Derf:  What is Derf?  How do I feel/think/react in this state?

-Derf is a state of mind

-seems like a place

-the ground is uneven here: watch your step

-I feel light on my face

-here, they have all kinds of weather

-I feel lithe, physically, for the first time in a LONG time! Yet,   I don't have the same strength, buoyancy, flexibility or stamina I had 10 years ago.  Will I ever? (yes, one must figure in aging as well as moving through Derf.)

-am I a visitor here?   should I apply for residency? 

-Is my task here in Derf like the actor's who stays in place while the background turns or rolls away, revealing a new scene?  

-how will I know if I should  mobilize ?

-How did I get here?  It would be tedious to retrace my steps.  Note: there are people selling maps out there.
 [ Don't waste your money.]  Like a thrilling child's tale, "everybody has to find their own way" to Derf.  There are wise guides (...you know her name) to help us, but I've come to believe that each person must do his/her own customized work to find their way here. Life: it's highly individualized.

-I feel "Better" than I did before

-I can feel more.  I can articulate more effectively what I'm feeling.  I have begun speaking up for myself in close relationships when I feel discounted, cut off, undermined, brushed off, ignored, passed by. I can tell when that's happened because I feel awful in my tummy and clutchy at my throat.

-some of what I do and say in Derf seems to run counter to the way I was raised.  I'm doing it anyway, bracing for the backlash.  I believe God is big enough to hold me (for comfort & safety, not restraining) and the others in the encounter while I sort through etiquette details in this new land. 

-I  exhale frequently here.  And, then exhale again. It's not the huffy, "fhmph!" exhale. It's just a long slow out-breath. Feels good. Feels calm. Feels safe.  So very different.

-when I feel like I'm growing wings while I've been here, I wonder if I should apply for a new ID badge.  Is this like the caterpillar and butterfly thing, where the newbie is unrecognizable?  Does anybody really know who I am?  [leastwise me?]

-Occupation:  ____   Oh my.

 I am a teacher. But, I'm not teaching, except out of habit.  Certainly no W2's involved. 
Do you think they'd accept:

watching trees grow; sitting on my back porch swing, staring; creating and tending a beautiful corner lot garden for all the neighbors to enjoy; dead-heading cosmos, calendula, petunias; weeding; watering; singing; playing the piano; reading; knitting; sharing cappuccino with my husband before he goes to work; making the occasional magazine cut & paste collage?


-Feels like an extended retreat.

-I feel calmer

-appreciative:  fabric, good smells -lavendar & sheets hung outside to dry in the sun!

-enjoy crossing the midline (it's a movement thing); going from symmetrical to a-symmetrical and back again.  moving forward and back; walking backwards just for fun

-feels like my feet are under me, supporting me. I feel like doing some heel-tapping jigs sometimes. 

-I love the feeling of water, in the pool; from the hose in the back yard.  I can feel it on my skin.  I can feel it on my feet - cool crisp refreshing water.  When I go to the pool, I don't feel competitive.  I don't try to push or pull my body parts around.   I just am.  There to enjoy the water.  If  it's quiet in there and I feel like making a lot of vocalizations or huffing/blowing/ phewwing sounds,[ to entertain myself],  I just move away from the other patrons.  Then,  I can enjoy my noises and not alarm them.

Derf is such a good change from what was, that I expect to keep following that light I can see and feel in front of me. "This is working for me," as they say.  I hope some of the companions I've met on this journey so far will come with me if I follow along to yet another land between lands.

Thanks for reading.

Wednesday, July 31, 2013

Feeling the feelings



Recovery work: learning to feel my feelings, and challenge my thoughts

Some days, I want to turn the page back to when I didn't feel and go from therejust let life brush on by me.

Sunday was like that this week.  And, it took all of Monday and part of Tuesday to 'recover' from feeling my feelings.

It was a bulldozer sort of day.  The schedule was crowded, as usual, but added to that were several incidences of "Oh, by the way, Luv, new plan:  would you/could you?..."   Emotionally, sudden change is not my friend.  I get jolted/thrown off.  Perceiving no choices in the matters presented on Sunday, I tried to soldier on, but my experience was that with each change, each need to step up!, I got younger and younger, 'til by the end of the day, I felt like an 8 year old trying to drive the car. Not good.

And, it continued into the next day.  I got completely lost/turned around/disoriented, driving to a relatively familiar in-town location.  I finally phoned for directions, because my mind had left me: blank screen.  The level of confusion felt similar to a side effect of deep grief.  Was I experiencing grief?  Maybe so.

Does this mean that if I have a very emotional day I need to plan to take the following 1-3 days "off" so I can resettle myself?  I don't know that either.

I catch myself looking for "certificates of completion," frequently, and especially when I get upset. "How long!?" I ask myself.  Really...  How long before what?  Is there an end goal?  If so, how do you measure progress toward that goal?

I don't know. 

Maybe Amy knows!

Wednesday, January 16, 2013

Writing




When I was young, I fancied myself a writer.

First grade: thick, black, well-gnawed pencil, 2-finger space between words writer.  Vegetables talking.  Mom liked it.

College:  poetry and journals.  Self-portrait collages.

I wrote words; am I a Writer?

I rhymed; am I a Poet?

Had I voiced my thoughts, would anyone have listened?

Who listens?
Who cares?

Is it for me, or thee, or a tree?


(c) 5-17-10 Dancingthots

Tuesday, January 15, 2013

Done-ness

 © 2012 Dancingthots.”  All rights reserved.

 Life occasionally asks that we work longer or harder than we know we “should.”   Many people seem to take such stretching in stride; they even laugh about it together, afterward.  But, I have learned that for me, possibly because of ASD, pushing through can be an unhealthy choice.

A self-imposed, unspoken but instituted “five minute warning” helps me, along with paying attention to what my body-being is ‘saying’ to me.

When it’s nearly “done”, whether emotionally, physically, socially, or any combination of those, my body-being sends out decreasingly subtle signals.  I might feel a slight headache.  I start to droop at my shoulders, subtly collapsing into myself. Irritation begins to express itself. 

 I was taught and had believed that the heroic thing to do was ignore these messages.   
Experience tells me otherwise.

Rest stop: begin to brake . I’m learning that for health and well-being’s sake, I need to honor my body-being realities. Getting overwhelmed?   Soon I will be exhausted.  I should not press through this thing.  I’m finished.

Naps:  It’s possible that a break in the activity will revive me.  Thus, for me, the institution of a daily nap:  lie down, fall asleep, get up, back to work!  Napping helps me clear my weary head. It is the only way I know to stop the thinking processes which I love, but which consume tremendous energy. Having a nap in the schedule allows me to work/rest/work again, rather than work/collapse/take cover.

Personal limits: Learning about personal limits has been a quality-of-life saver.   Historically, I would push and push and push, because everything is so interesting to me, and after all, I reason, nobody else seems to be leaving yet.  The inevitable result of the decision to press through as the others do, against my body’s warnings, has been discouragement, migraines, depression and sometimes illness.  


I’m learning that even if everybody else isn’t done, or even if the situation isn’t done, or some task is not done, if I’m “done”, I am done; I need to step back and take a break.

Humpty Dumpty





should not have been sitting on


 that wall!  

Monday, January 07, 2013

Perfectionism



On cultivating a number of good-enough skills


(c) 2012, "Dancingthots."  All rights reserved.

Preface:  Always been told “excellence” or it’s no good.   [Would you consider that “all-or-nothing” thinking?]

e.g., The higher education model: ever-higher. 

How soul-limiting: never alighting in peace.


I was playing the piano this morning, beginning to relax and enjoy the moment, but distracted by niggly in-mind chatter:  Awk!  You should take lessons, so you can play better…” 

There it is: excellence or else, spilling into my everyday life. 

I asked myself, while continuing to play and sing, “Where would I find time to practice the piano right now, and to what end?”  

I realized that it’s OK with me that I play medium alright.  It suits my purposes. And, while I enjoy studying anything, including piano, I don’t have the desire or motivation to practice hours a day to measurably improve my playing right now. 

So, I asked myself, “Is there a place for medium “OK” skill of various kinds in a life? If I sew pretty well, and play the piano pretty well, and take photos pretty well, is that enough?  


Who sets the criteria anyway?


Thursday, January 03, 2013

Insomnia



By Dancingthots, © 2010 All rights reserved.




Sleepy. 

   
Where did you go?




Rain chattering in the downspouts, 


thoughts puddling in the would-be going-to-sleep-now places in my mind.



Splashing. 


     Listening.   




               Comfort from the nightness.



More awake now, I realize I’m savoring the solitude, reviewing the day’s challenges.



                                  Position change.  


Try the breathing techniques.  


                                                 Take a leak.  


Rearrange, 


                               adjust, 


relax, 


                                                wait.




  Where does tired go when you lie down to sleep and it’s gone?

Tuesday, January 01, 2013

Room for Joan

(C) 2013, "Dancingthots." All rights reserved. 

On preparing a new room in our house.

The "Happy room?"  "Room for Joan."  I cannot guarantee a room full of happiness but I can make this space mine: a place to embrace and celebrate and express who I am, in whatever condition I'm in. 

 Oh, twittering joy! I'm allowed! 


I noticed a few things, while vacuuming the carpet after we finished the paint job. 

Ownership- "a belonging to" "here for you" sort of connection to the room, even to the process of cleaning it. Something along the lines of, "This is mine; I want to make it nice, take care of it. " 

This impacts a deficit pretty difficult to explain, but I felt it, comprehended the feeling to be different for me; I realized it was a significant moment. 

Emotional thinking- now, I'm in the process of deciding what to put on the walls, how to create "texture," what furniture I'll allow in here. Yesterday, I was noticing that I was agonizing about the 'what.' Thoughts like, "Oh, where will I find just the right things? Second hand? New? And, btw, what am I looking for?" 

Even imagining the selection process, dissatisfaction became apparent, though I hadn't yet identified or lined up anything tangible. Then, the "Ah ha!" I realized I was thinking from my emotional center. [I felt it in my gut]. Hmm. Emotions- thinking. Maybe not the best platform for decision-making. Need another tactic. 

 I realized, by the grace of God, that it will be impossible for the room, or the things in it to fulfill the longings in my heart (felt in my gut). Those longings need a much more intangible, on-going life giving source of nourishment: likely a combination of many things, relationships, activities, deep breaths, colors, sounds, singing, moving, smells, etc. [Recovery 101..] 

A "room for Joan" has all sorts of positive implications for making progress toward soul nourishment. And, the stuff I put in it -- might need to be rotated to fit my mood, emotional needs. Some days, I need a trampoline. Some days, an overstuffed couch. Probably won't have both of those in the room, maybe ever. (I don't want to overfill the space - no no no..) But, the room, no matter how carefully equipped, will not bring deep contentment, where there is internal strife. (alas....if only it were that easy!) 

Parenthetically, I realized this same principal operates in my friends who shop to satisfy their longings, and ..never do. Yep- and food, etc. etc. 

What is in the room?  

Color: So far, I've hung up, sort of as a curtain over the closet space in the corner, a length of beautiful silk fabric that my mother (DOD- 1974) brought back from ..Japan? ..lo these many years ago, and which I've been saving for just the right application - for nearly 40 years!? I think this is a perfect use for that fabric, long-awaiting the light of day. 

Two shelves (built-in, in the closet space) Sewing machine and new roller-storage unit (tucked into the corner closet space) Computer and wee pretty desk.  A yellow upholstered rocking chair (from my mother's world). We might eventually replace it with something I would choose. I like rockers, but she was 3.5" shorter than I; it seems built for her stature. 
 A wooden piano stool (which I acquired on purpose a few years back) on which thrives a lovely, fragrant, healthy gardenia plant my brother sent us for Christmas. 

Clearly, there are walls of opportunity to put up photos, new and old, and stuff and what-not. I shall take my time about that, adding as I feel inclined, or as pieces are printed and framed. I realize I could do art-show prep in this little room, patiently preparing and gathering works for the possible gallery op. [Good idea,  Joan]. 

Ciao, and thanks for listening/reading.