This is how I learn

This is how I learn to write 

after weeks of longest night

when it seemed like thought took flight 

this is how I learn

This is how I yearn to share

all the triumph and the fear

from this overwhelming year

this is how I yearn

This is how I burn and rage

against the bullshit assholes wage

almost daily, stage and page

this is how I burn

This is how I turn around

after silence, after sound

grateful, humble, deeper ground

this is how I turn

This is how I learn to say

all that's precious in this day

and the next one, I will stay

open, yielding to the way

wonder, pain and hope can play

I am dwelling, I am dwelling

this is how I learn

...'tis a small thing, but my own....

Tales from Autism camp.... Vignette #3

Meet Walker. Pre-adolescent boy, precocious as hell. Bright, busy, curious.... and did I mention that he is a precocious pre-adolescent boy?
Walker also talks about himself in the third person, but he makes these little announcements, in case anyone working with him needs a bit of time to react.
" Walkerscratchyourface!!!" he delivers in a hideous whisper....
You are looking at his cute, round little cherubic face, thinking, there is no way he will scratch my face, surely..... but while you are thinking this, you really need to be backing up because Walker WILL scratch your face.
He is a pretty good biter as well.  You will have learned to " feed the bite", that is, push your arm (or whatever body part is being bit) deeper into the bite, or push on the back of his head to push him deeper into the bite. Your first instinct, to pull away.... not good!! You may even use the pinch the nose technique, which is effective because eventually, he has to breathe. Walker, however, has adapted.  He can bite with his mouth open so that he can keep breathing while you pinch his nose. The Borg could take lessons from Walker.... he can adapt.
The past two summers he has introduced a special new strategy (although considering it is a pre teenaged boy we are speaking about, this is actually a long standing strategy, pardon the pun.... you'll see what I mean in a moment...). When he wants to do a vehement protest or just be downright impish, he whips down his pants and pulls out his tiny little penis, stretching it to its fullest length. And he, well, sort of brandishes it about for as long as he can before we catch him and get it put away. Of course he is giggling madly all the while he is doing this.... I hope you are getting a visual. It is especially silly looking when he does this dramatic  display of the unit while he is wearing his noise cancelling headphones ( they are huge, btw, .... the headphones, I mean).
Despite his unit displaying antics, Walker is a great kid. He is honest, and, in many ways, is as typical a preteen boy as any other young fella I have worked with over the years.  Even though we cannot let him see our reaction (because then there would be no end of opportunities to see the unit.... ) we do have a good time at our end of the day debrief. He keeps us on our toes. He reminds us that we need to pay attention to the small things, or, we will indeed be paying attention to a small thing.

.... a very sad song!

Tales from Autism camp.... vignette #2

Virginia speaks about herself in the third person. She says things like "Virginia will now sing".
And then she sings.
or....
"Virginia will now go to the bathroom"
or "Virginia will now eat popcorn"
or.... on the occasions when she is willing to be observed doing activity she says " Virginia would like you to clap your hands 100 times" because of course we are sooo impressed with her spectacular performance.

She is bright, observant, savvy. She knows what she likes and doesn't like. When she is particularly displeased she will frequently say " Virginia will now  sing a VERY SAD SONG!!"
and then she proceeds to do some quite dramatic faux sobbing.
Ooooo uh ooooo uh ooooo.... sometimes sliding into Nooooooo, noooooooo.

Mona Lisa, the excellent and sensitive student who works with Virginia says to her....
 "Please,  sing that sad song quietly" and Virginia, never one to walk away from a challenge then offers this....
Ooooooo uh uh oooooo; noooooo, noooooo
 and then Mona Lisa whispers " now make that sad song even quieter" and Virginia will look at her and will bring her voice to an even quieter place, all the while maintaining the plaintive lament.....
Noooooooo, nooooooo......



This is a lovely example of how these kids communicate their emotional states and how they use codes and registers.They are so damn smart!! Virginia will sometimes slip into the use of " I". But it really doesn't matter. We know that things are just not going well when it is time to sing a VERY SAD SONG.
I may have to adopt this as a strategy for department meetings. I will give fair warning ( Harlequin wants to sing a VERY SAD SONG)  and  I will launch into a plaintive lament and wail beautifully..... Noooooooo, noooooo.
I will keep you posted on the results.

Thanks for reading. The kids I work with are gems. And my students... are amazing.  

"Help, help.... this woman is not my mother".... and other tales from Autism camp

Two weeks have passed since the conclusion of my 17th annual summer movement camp for kids, teens and young adults with ASD ( Autism Spectrum disorder). Week one had 55 campers and week two had 60 campers of various ages and manifestations of this remarkable way of being in the world. I also had 40 (mostly) wonderful students and another dozen returning veterans who I affectionately call " Angels" who help out the wonderful students in their efforts to work with the campers. 
Here is the first of a series of  vignettes that tell a little bit of what it is like to be at my camp.....

Vignette 1 This woman is not my mother.....

Igor is 8 years old. So far this summer he has been kicked out of every camp in the province by day two of camp because of his abusive language and manner with staff and other campers,  and his overall unlike-ability. In my opinion, not liking a kid is no reason to deprive him of a camp experience and most of the kids I work with do not get to have many camp experiences.  He is a bit hard to take.... arrogant, brilliant, verbally skilled, disdainful of other campers who are more severe than he is ( he calls them "retards" among other less complimentary terms) and also of the students who work with him ( he calls them whores and wenches and bitches and stupid and pathetic.... blah blah.... ) and he is profane. Of course, we cannot react to any of this because it only feeds the fire of the attention seeking. On the rare occasions when he is not finding fault and being the general manager of the universe, he can be charming and cute. Kinda like an 8 year old boy with a great imagination and sense of wonder and curiosity about the world. This is what we hang onto for motivation. I tell my students NEVER to be alone with their kid. Always have another student and camper with you. Travel in 4's. Right. What would the old teacher know, anyway??
So, we go on Wednesday to a very cool Safari place with animals and rides and playgrounds and a HUGE splash pad... an all around fun day. It is crowded, lots people from the surrounding area go to this place, not only camps like mine. So, Igor and his student, let's call her Treasure, are with another student and child, let's call them Dimitri ( the child) and Cherish ( the student). Cherish has to take Dimitri to the bathroom. Treasure decides to stay where she is with Igor. Big crowded open area with a nice playground. What could go wrong?? I suspect that Igor had this little action plan brewing all day, and was just waiting for his moment. And now, here it is.... his moment. He yells in a loud and piercingly clear voice: "Help help .... this woman is not my mother or my guardian.... somebody please knock her out... help help...."
Treasure is immobilized. She tells me later that she had no idea about what she could do.... if she ushers him off to the side she looks like the abductor he claims she is. If she steps slightly away from him, she looks like she has been caught in the act. She stands helplessly by, hoping that Igor will not attempt an escape, until Cherish and Dimitri return from the bathroom ( Dimitri has more of a stereotypical "look" of a child who has some atypical stuff going on....) and the horrified onlookers put two and two together ( literally) and go back to their regular being there activities. I glare at Igor. He shrugs and gives me the " can't blame a guy for trying to have a little fun" swagger. I walk until I am  close enough to touch him, but do not make any contact. I hover over him for a moment and then crouch down so I am at eye level. "Not funny," I say in a very cold, very soft voice. And I stand and walk away.
Igor's mom is not as upset as I think she ought to be. I wonder about how his strategizing is received in other contexts. But there is not much I can do about that.
In the debrief after all the campers have gone,  the students have a renewed understanding about not being alone with their camper. And we do some brainstorming about what to do in a situation like that.
It could have been worse.  At a lot of levels, it is funny, absurd, wicked..... and we can appreciate that.
At a lot of levels it is sad and poignant .... and we can appreciate that more.
The amazing gifts of experiential learning.

more vignettes to come. Hope you enjoy....

September 3, 1980

Happy Birthday to my son. 33 on on September 3, 2013. Lots of threes.
I sent off a goodie package in the mail, of course. Never miss an opportunity for sweet absurdity. Good thing he has the temperament for it!! And ya have to love a man who uses the word " adorable" to describe a silly gift....
Feeling the love and all the gifts it brings.

Subway

Here is a memorable, if not too recent, interaction at a local Subway restaurant. Honestly, I am becoming much more intrigued and fascinated by everyday encounters. I suppose my recent experiences with uncertain futures  have made me more appreciative of the silliness and wonder of mundane life. Whatever the reasons, here is a great little vignette.....

This gal walks in to the Subway restaurant (it's about a block from my house) and heads directly to the counter. She gazes up at the menu board and, in a loud and definite voice, gives her order: "I 'll have three six inch spicy Italians".
I am standing right behind her and I can see the face of the woman who is taking her order. I cannot help it.... I give a wide-eyed look of amazement and surprise and I have to say.... "wow.... I had no idea a person could get something like that at Subway."
The gal giving the order is not fazed in the least, and I expect that she did not pick up my pithy double entendre (ahem). But the woman taking her order, someone closer to my age and clearly more appreciative of my humour, gave a little snort and then got herself under control, and got those spicy Italians ready to go. It was a moment. What can I say.
Maybe you had to be there.
I 'm glad I was!!
Hee hee.

Writing in a thunderstorm in Pittsburgh

yellow ball

sun or moon

breaking dawn

twilight soon

flowers 

branches

lead the tree

out of this dichotomy

days will start

days will fall

moving 'round a yellow ball

or is it yellow after all?

silhouette, distant light

early day, early night

blossoms open

petals may

lift and lower

swing and sway

almost breathing 

in a way

pink and white 

chant and pray

together 

weather wind, and stay

simultaneous/ly

 play

delight/ed

Lessons of May

Sleep that's not restless

Feeling my toes

Food that's not tasteless

Hairs in my nose

Itching's relentless

But nausea slows

These are the lessons of May

Blogger betrayed me

Erased all my friends

Re-connecting's not easy

Yet still I depend

on being tenacious

in ways that don't bend

These are the lessons of May

Finding a balance
Between then and now
Knowing my energy
Isn't a plow
Ceaselessly trenching
Row upon row
These are the lessons of May

Partner, son, family
People who care
Words of encouragement
People who dare
To be in these moments with me
Life laid bare
These are the lessons of May

 

Hickey

so, another month has passed. May and its lessons. This will be the title of my next post. I am processing the remaining gifts of chemotherapy. Lots of "processing" in body, mind and heart. The body stuff is cleansing and irritating and uncomfortable all at the same time. Oh, and ex-HAUST-ing. Whew. Nice to sleep more easily. Nice to be nauseous for short periods of the day and not for days and days at a stretch. Nice to be getting my taste buds back ..... sensation back in my hands and fingers, that's nice,too. Feet and toes, another story. Hey, I am glad to be feeling them again, but it has been totally weird. And painful. And ITCHY.

but enough of that .....
One of the real joys of this cancer odyssey has been the support of friends. One such friend, I will call her Leaf, has been my chemo driver. She picks me up, drives me to the clinic, waits and sits with me through the treatment and drives me home. Our sessions have been a blast..... we chat, we have created assessment rubrics ( we both are involved in a teaching based occupation), we have planned and  written conference presentations,  we tell each other stories from our lives. I want to share one of Leaf's stories with you. The title of this post is at the heart of her story.
So, Leaf  plays hockey in a men's league.There are a few women who do this..... they play at good level and like the added edge in the men's game. These gals also play in women's leagues, but they seem to thrive on the variety. Anyway, Leaf has been playing with these guys for a few years. There is a good sense of respect and fun and support. After the game, the team goes for wings and beer and it is an easy social context. Most of the guys are married and some are related to each other and know each other well. Leaf enjoys the post game social time and is comfortable with this group of fellas. On the rare occasions the guys want to go to a strip club, Leaf leaves them to it and goes her own way rejoicing.
At a game a few days after one such strip club excursion, Leaf notices that one of the fellas, let's call him Jack,  is covered with bruises all around his neck and shoulders. She does not want to pry, so waits for some of the other guys to pass on the tale. At wings and beer after the game, the other fellas give her the scoop. Jack has begged off early to be with his wife and their new baby. This is an important detail.
Turns out that at the strip club, one of the Ladies got nice and close to Jack and gave him a huge hickey. In the parking lot after they leave the club all hands notice her handiwork and Jack is now in dire straits. He cannot go home to his wife and their precious new baby with this awful mark on his neck. What to do??
I looked at Leaf and said, " he asked the guys to beat him up, right?"
She looked back at me, incredulously, and said "Yes!" like this was some unthinkable thing. Indeed he did.... Jack begged his pals to go at him with  their sticks and to follow up with fists in hockey gloves  to make it look even more authentic. Apparently, the beating allowed him to get home to wife and child with no worries at all. Except the aftermath of the beating.

Leaf and I traded lots of stories from everyday life. I love stories..... such lovely slices of life and such textured slivers of light illuminating  these  sweet and funny moments that make up so much of how we are in the world. My deep  appreciation for these moments is also a gift of chemotherapy,as are the words and messages that I continue to read from fellow bloggers. Cheers to all of you poets of  moments and imagination.

Drought

Cancer marches in
takes up residence in my mind
and my heart
 and my body
takes a breath
puts one foot in front of the other
does the next right thing
Priorities are over-rated

Treatments rally
soldiers in an assembly line
Slice, dice, chop, drop
poke, prick, zap, drip, pop
poison, rinse, swish, swallow
carve a hollow
space for time
this now on a rhythm
of its own
Schedules are over-rated

Take a number
effects exceed
any and all anticipations
cast asunder, scrambling
against a slow and steady
relentless trickster
pounding, overwhelming
Drugs are over-rated

Saddle up
thus begins the wild ride
crashing, burning,
overturning
preparation
navigation
imagination
Sensation is over-rated
Taste is over-rated
Hair is over-rated
Sleep is over-rated

Huddle up
Hunker down
look these two familiar strangers in the eye
& recognize them for the imposters that they are
abandon the myth of equal exchange of services
Ask for help
Accept it
Express gratitude and mean it
Be honest
refuse the seductions of bravery
minimizing
awkward moments
pep talks
platitudes
feigned interest & worse
Collaboration is over-rated

Cancer marches in
takes up residence in my mind
and my heart...
and my body learns
new "tolerances"
Euphemisms are over-rated

This Special Day

this special day carried my son's words

breathed the sound of leaves

ocean

rain

shimmering 

 in a sweet, clean bowl

one smooth stone

stillness

hope

this special day leans into that sharp edge

looks into that deep well

yields to fear 

and re-birth

celebrates this

fragile, tender

now

of moments given

unfolding

 

Dry Date, 2013

This date is designated my " Dry Date". It is the day that commemorates my decision to live as a sober person. 23 years later,  I am a proud member of Alcoholics Anonymous, and am grateful for every sober day. I do not take it for granted and I am vigilant about the state of my spiritual condition as well as my overall well being. This is more difficult than I thought.... it is easy to get caught in old habits and, as my dad (also an AA member; died a winner almost two years ago) used to say, sometimes your mind is not your best friend.
I could not imagine persevering  with my present cancer situation with the attitude I have if I were not sober. Being present with my life and not being afraid to be alone with my own thoughts are gifts.
I do not do this alone. I have a wonderful sponsor and a group that accepts me and a family who respects the choices I make and who care enough to be honest with me about the things that count.
Today, I am reasonably  content. I have a measure of serenity that sustains me, one day at a time.

Taxol

Chemical, poison, , beast, fire, train.
And, for its encore, there are other destructive effects other than preventing the cancer cells from doing what they do.
It is powerful and nasty.
I have been living with this beast since mid December. I have learned that the day of, and the two days after are relatively good. Then, by day three, the effects hit me like a train. Pain, disorientation, nausea, loss of sensation..... the anti vomit drugs are great. But, they are a bit of a wild combination in themselves. One of them is an amphetamine/steroid combo and the other is a narcotic, so I have the added thrill of being REALLY ALERT  and really confused and fuzzy at the same time. This lovely feeling lasts for the week or so after the treatment. Then, things start to subside.
Two weeks and one day after the first treatment, I began to lose my hair. 10 days later, it is all gone. I am getting reacquainted with my head. I like it! I have a pretty good looking head.
At my second treatment, my oncologist and I have a consult and he  decides that 10 days of pain and loss of sensation and reflexes are not harbingers of good things to come, so he discontinues the Taxol.
I am now on only one chemical, and while it is a poison, it is not the beast that Taxol is. And the drip is only one hour as opposed to the four and half it took the first time.
I am so happy!!
The week after is still not fun; but it is a distress I can manage. Four to go. One is next week and then I am half way there. Yippee!!
I am surprised at how much my energy has been affected. I always took it for granted, assumed I had an infinitely renewable resource, never gave it a second thought.  Now, I actually have to think and choose. I am learning new habits of body.  This is a gift I did not expect, but I am learning to listen and wait in ways that I did not have to consider before. I am open to my moments..... I am learning how to yield.

I am so grateful for the support of friends, here in the blogosphere and in my face to face world. Your and their ongoing compassion and witnessing have been touching and meaningful.