Author: Suzanne Buchko

learning art

Julia is having her first art lesson.

I planned to write about the rest of the vacation.  Perhaps I will write a bit more about it but not now.

Julia is having her first art lesson.

Julia has been drawing for about 7 years now.  She was scribbling for a year before that — those big sweeping arcs that two year olds do.  She was 6 and then 7.  During those days, she was so far behind in everything, she was so hard to put to sleep, her behavior, like those arcs, reminded me of a 2-year old.  And we — David and I — were pretty scared.  Then one day during first grade — she had the same teacher for Kindergarten and first grade — her teacher, Christy, called me from school.  This was not unusual at that time.  I got calls at least a few times a week to come into school, if I could, to help with a tantrum.  That day, Christy called me and announced that “Julia was drawing!”  And she was.  There was a dinosaur on the page and some other unidentifiable forms.  Every one was carefully made — distinct and clear.  Julia had been  making forms in clay for awhile by that time but suddenly she was making her forms two dimensional.

About a million pieces of paper later, it is clear to anyone who sees her work that Julia is an artist.  Like the artists that I have known, Julia draws all the time.  So much all the time that her time drawing needs to be limited sometimes during school or therapy.  Drawing has been used as a reward for good work or behavior and a majority of the gifts given to her at any time have something to do with art.  And she uses them all.  Although I have not kept all of her art work — I take pictures before I discard — I have dozens of sketchbooks that are completely filled.  This summer, one of our reading projects is to draw a picture of a part of the day’s reading.  This was suggested by her eye doc who does vision therapy with her.  For Julia to draw a scene she will have to imagine it, perhaps imagine it in greater depth than she is used to doing.  Julia decodes with ease and she reads too quickly to uncover everything in a text.  Thus, her comprehension is poor.  She has problems with comprehension because it is so hard for her to infer anything that is not on the page but her speed reading makes the hinderance greater.  Perhaps by drawing a picture of Mary and Laura running through the prairie, she will eventually infer that the day was sunny or there were little hills that the girls ran up and down.  I don’t think that this will happen quickly but Julia loves to read and loves to draw.  In the early days of her drawing, we learned about her anger and rage and sadness.  It was amazing that after years of drawing dinosaurs fighting and killing each other, she began to draw nests with eggs and tiny dinosaurs hatching, dinosaur weddings and dinosaur families.  I imagine that she will learn inference through drawing.

Another summer project is art class with Kati, who has taught her art for the past 4 years.  Katie said to me two years ago that she would love to teach Julia but she couldn’t do it while Julia was still a student and anyway, I was not ready to impose lessons in art on Julia.  I and the army of support that has surrounded Julia have tried to change so much about Julia.  We have all tried to modify behavior, control emotions, speak appropriately, interact gracefully and count and read and do self care.  I wanted her art to be just for her.  Certainly, she was getting some instruction in school, and without a doubt her art was changing and her eye growing, but it was at her own pace and with her own interests.  This summer I want Kati to try to teach her about art.  Can Julia change the way she draws when she is being coached?

And this is her first time.

IMG_2511Julia began the lesson, as she always does, refusing to consider doing anything that Kati suggests.  (Need I say, Thank the heavens for someone who knows Julia well!!! )  Within an hour, they are both on the floor in the living room drawing various views of Julia’s cello with pencils that smudge.  I hear Julia refuse to look up at the cello as she is drawing and Kati telling her that she will set a timer and Julia needs to look up each time.  Kati moves the cello and they draw the instrument in 3/4 view and on one side.  And she is doing it!  And calls for me to look at the work.  She complains to Kati that what she is doing is not good and then goes back to work.  She is drawing more than one view on a big piece of paper.  She asks to color what she has drawn and that gives Kati a change to point out variations in color and shadow and highlights.  Julia is not complaining as Kati speaks.  She begins with light colors and layers on as Kati advises.  Julia usually goes for the dark colors and then tries to layer on the lighter — she goes through a lot of white pencils and crayons.

IMG_2509Yesterday, during attachment therapy, Marilyn asked Julia to draw a picture of the dolphin that she swam with in Mexico.  (We do not have pictures of the experience because those pictures were too expensive.)  Julia complained that she could not draw a dolphin.   She did not know what it looked like.  And then she began drawing.  She drew two pictures and the one above is the second picture.  The girl — Julia — has a life jacket on and she is holding onto the jacket just as she was told to do when the dolphin kissed her.  Although Julia drew herself at first with the pigtails that she usually puts on herself, she erased them and drew her hair closer to the way it looks now and with her favorite flower clip.  I especially love how happy she looks.  To know Julia’s work it is to know that she doesn’t always draw the people or animals that she works on with happy faces.  Julia’s happy face is like a double joy.

Julia has been designated as a TAG (Talented and Gifted) art student.  Because of that and also because of her IEP, she will have art every semester during middle school.  In the world of budget cuts, this is a rare privilege.  Talking to the middle school art teacher, Tracy, I think, she plans to have Julia do what the regular art class does for the first semester and then work on individual projects the second semester.  And then make plans for seventh grade.  These ideas make this summer’s lessons even more important.  If Julia is to have school art projects, she needs to accept and learn from a teacher.

If we have departed dear ones who protect and guide us from where ever they are after death, I can almost imagine that my dear friend, Jim Jones, is Julia’s guardian angel.  Jim’s work hangs all over our house and sometimes Julia comments about the work and about Jim as if she had known him.  She does in a way — she knows his work.  Jim was no angel but just perhaps he is hers.

Posted on by Suzanne Buchko 1

solstice

written 21 June 2014

Almost summer.  Or is it summer?  Solstice day or night is when the season changes.  We are preparing to go to Tulum today.  Intent on using a tour company but our local taxi driver convinced us to use another local driver who speaks English.  We are getting the same tour for a third of the official tour price.  Will we be disappointed?  From experience, it appears that having the “official” anything does not guarantee proficiency or knowledge — a real tour guide may have a graduate degree in history or may have visited the site once.  It would be great to have a fantastic guide — a naturalist who guided us around a park in Costa Rica taught us a great deal — but we’ll bring our guide book and just a few facts and ruins themselves feel sufficient.

Having Cheshire here to speak Spanish is an incredible help.

We are having a good time.  I am having a good time.  Yesterday, we were lazy.  We had our equivilent of not leaving the resort for most of the day.  We lounged around our little pool, took frequent dips — I am in love with out tiny pool! — watched a midday movie and napped, and finally made it out of our house to go downtown for dinner in two restaurants and an ice cream bar and shopping.

Julia is spending a lot of her time relatively alone.  That Is, she is with us physically.  Always.  But not always interacting.  Instead, she is drawing, playing with leaves or plants or sand, reading or asking to play with her iPad.  I need, desperately and not so much, the interaction with adults that my dears, Cheshire and Alice, provide but I also have felt incredibly guilty not constantly interacting with Julia.  And yet, Julia’s time is not ill spent.  This morning I feel a gentleness come over my feelings.  Realistically speaking, the time away from interaction is not in some dark corner but within hearing range, physically together, and available for interaction.  This is not different from how all young children are raised.  I have wanted to shovel everything that was missing from Julia’s first years into our lives together so that she could “catch up.”  At the gut level, I have wanted her to become typical.  I am still learning.  As I contemplate art lessons for her this summer — art, the last quarter in which Julia does as she wants — I am drawn to think about respecting her integrity, her spirit that expands at its own rate and in its own way.  Her not quite appropriate interactions with us and with the people that we encounter are her own becoming herself.  I am aware, acutely, that I have the power to squash her soul and suck the creativity out of her.  How, in a much, much subtler way, that was done to me.  I cannot do that to her.  If she be an artist, if she be human, she deserves more than correction and fitting into some box that I have imagined.  I am here for her, to protect and defend, to teach but also to be taught.  This is a fluid relationship — like all relationships — and I can never allow myself to forget that.

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arrival

At best, travel is for exploring yourself.  That is how it has always been for me.  Not that I’ve found nuggets of wisdom in every jaunt to the Jersey shore or expanded my inner vision with every overpriced ride from an airport, but going to and being in some unfamiliar place pulls my spirit hither and yon.  Nothing can be assumed, nothing is on automatic.  Perhaps it is the jolt into the present moment.   Perhaps that points of comfortable recognition are not available to hang on to.

This is one of the mornings that I cannot type fast enough.  I want to get so much down on this screen and I know that when I follow any thought path, I will leave others, equally important to me to die by the wayside.  Sometimes when I travel it takes me days to get into this mind set and when I don’t feel the click into this intense desire to settle into a book, journal or do some mindful exercise, I am very disappointed.  When the switch is thrown (although the mechanism is still unknown to me) quickly, I celebrate.  This morning is one of those experiences.

We — Julia, Cheshire and I — are in Puerto Morelos, a small town south of Cancun.  A bit more “real” than its  ersatz developed neighbor.  We are in a very sweet walled house, the house developed for tourists like us — little pool out back, BBQ, very nice linens, good kitchen, big screen tv — on a street where dogs back and some properties are falling into ruin while others are being built.  Mexican people walk and ride on motorcycles and in cars.  We saw another tourist couple in the convenience store but without Cheshire’s Spanish and some pesos, it would have been harder settling into our digs last night.

We arrived in late midday into the stifling heat that is both unpleasant and recognizable to me — Vietnam and China, even Costa Rica — I have traveled in this kind of heat before and my body know, even when my mind refuses to believe, that this is a place of slowing down and tending to the body in a way outside of my normal day-to-day.

Monday night back in Madison, there were fierce storms, tornado warnings and alerts.  We spent a good deal of our night on the living room couch and in our basements.  There were trees down and houses ripped up, not in our part of Madison but close by.  As I looked at the pictures online much later I was very much aware of how life changes in an instant — how different Tuesday would have looked had the storm claimed our neighborhood.

Julia and I had a place at 6 a.m. in Milwaukee which is about an hour and a half from our house.  I know, crazy time, but I never sleep well before a trip and always sleep on planes — it seems a good use of time and energy but how crazy it was!  Monday, I had very little planed outside of Julia’s activities.  We packed, cleaned out the frig, checked in with Amy (whose kids are cat sitting) and were both in bed early — she before 9, myself before 10.  The thunder and tornado alarms woke up before midnight.  Julia first climbed into my bed.  She can sleep though a moderate thunder storm now, but there was no sleeping though this one — thunder, cell phone alert squawks, town alarms, and emergency vehicle sirens.  When the storm seemed to keep coming, I checked the weather on the lap top and tried to decide what to do.  After all, we were waking up at 2 to leave before 3 to get to the airport.  I had “planned” on those four hours of sleep to get me focused enough to drive.  My initial mental gymnastics were about how I was going to get back to sleep in order to stay on course.

Ah, how the gods laugh at mortal planning!  If there are micromanaging deities, I could believe that they present us with lesson after lesson, usually on the same topic.  Almost ad nauseum, waiting for some learning to happen.

After a few minutes of wild storming and the warning to get into a safe place NOW, I had Julia put on clothes and we sent down to the first floor.  Amy, bless her heart (friendship lesson #5,009,234.671), texted me asking if I was ok.  Yes, this was serious weather.  We stayed on the couch in the living room which is not as safe as the basement but from which movement to a safer part of the house would be easy.  We snuggled together for an hour or more, neither of us sleeping, me worrying, Julia very quiet.  When the alarms stopped and the storm became merely heavy rain, we climbed the stairs and collapsed into my bed.  I would have time for a nap before hitting the road.

The alarm went off at 2 and for a moment I imagined it a dream.  I willed myself out of bed — when David was alive he would have done the willing.  Yes, I have learned.  — grateful for the shower that woke me up and the time to rouse an exhausted Julia and get us out the door on time.  And then on the road we hit more intense rain.  Optimistically, I must admit that although I hate driving through rain and hail, there was no possibility of falling asleep at the wheel.

The trip down was uneventful.  We slept on the planes — I much more than Julia and arrived in Cancun with flocks of American and British tourists lining up for immigration as if they were Noah’s cargo of feathered and furred pairs.  Julia had been cooperative on the planes; however, she denied needing to go the bathroom when I did during our second flight.  And she is still not always aware of her body.  Where that leads is predictable but always surprising to the mother who juggles too many inconsequential lists in her head.  The long walk from the plane to the immigration lines which is not lined with conveniences was too much for her and mid way there she stopped with pee streaming down her legs.

My initial anger leads me to humiliation  which would work well for most typical kids.  I am not proud of this, ever, but my first impulses with what I see as baffling behavior is not necessarily the most helpful or loving.  To my credit, I deeply see that there is no intent in these situations, there is just poor planning on her part.  We found a rest room before the immigration line, Julia changed into the clothes packed in her back pack — always a change of clothes incase of travel mishaps — and she washed her good sandals before we went into the lines.

I am struck by the Velveteen Rabbit realness of living with Julia — we can have no pretense, no false pride.  We find joy where we can and we are not humiliated by what occurs.  That did not come out as profound as it is clanging around in my brain.  Not that many wiser people have not taught the same thing but I am so much Dorothy who needs to discover how those ruby slippers work for myself.

The house, as I said, is lovely and it was heaven to spend the evening and night with Cheshire!  We can talk — we might do it non-stop for the entire week if mouths did not need sleep or food.

There is a convenience store  of the 7-eleven variety and two restaurants within walking distance of our house.  We bought cereal, milk, bananas, cookies and Julia’s longed for chips there and then retired to a very empty restaurant which served very USA food.  It was very good — Julia’s fish and chips was as close to healthy as that dish can get, my burger was perfect and the calamari, “Brooklyn style” was fresh — but not the Mexican experience that Cheshire and I travel for.  Julia was hungry!   Understandably so since we split a bagel before the first plane and had little else except for plane snacks during the day.  I was still on adrenaline from the last 24 hours, she simply needed food in a way that she rarely does. She ate her own food, had bites of my burger – rarely does she care to taste what others eat, rarely does she really care about food! — and some of my and most of Cheshire’s fries.  We then returned to our little house, exhausted but not tired, and watched one of the Star Trek movies on the largest tv screen that I’ve ever lived with.  Julia went to bed protesting a little, more a formal protest than with any passion, hit the pillow and was out cold within minutes just after 9 which under normal vacation circumstances would have been early.

Cheshire and I indulged and dozed in front of The Wolf of Wall Street which is an incredibly depressing movie.  I have little interest in dissecting my reasoning but suffice it to say that perhaps some spiritual awakening has penetrated my core.

This morning I woke up just before 7 — I am still on school year time and 7 is sleeping in on a school morning.  I came out to our walled back garden, did Japanese Crane, took a dip in the pool sans clothing, made myself some tea and have been tapping away on a lounge listening to birds that do not live in Wisconsin and the rustle of palm trees.

And now, I hear the murmurings of Julia who may have found her iPad before she decided to find me.

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turnings

So, wow and thanks to the rather excruciating tiring hike of Friday.  Yes, I complained about exhaustion and didn’t complain about sore muscles Saturday but it worked wonders.  Today, we took a bike ride around our little bay and I almost enjoyed it.

I am out of shape.  Yes.  Indeed.  Add to that, I have a 10 year old bike that was a $65 Lowe’s special when it was new.  The brakes are almost nonexistent and the handle bar is unstable.  I’m almost sure that more is wrong with it but I’ve been putting off a tune up because I expect that someone will seize it to cut it apart for parts.

Ok, just a bit of hyperbole.

So, out of shape, bad bike and Julia rides pretty slow.  She is doing a great job these days starting out, balancing, keeping those pedals going and stoping using her brakes, but she rides slowly.  Last week, riding slowly seemed to be a special kind of painful hell.

Oh, and also, I ride with a bit of stress.  Worried about how Julia is doing, whether she will fall down or into traffic or hit a jogger.

Today, we were half way around the bay when I realized that I was feeling pretty good.  Julia was still going slowly and there was a brisk breeze blowing against us and the handle bar needed bracing, but I was not out of breath and no part of my body hurt.  I think that whatever body parts were put in gear during our long hike was exactly what I needed to begin again.

Back on the bandwagon of a strong, well-maintained body.

This week, the week before vacation, will be busy and bittersweet.  Julia’s graduation ceremony — known as the moving on ceremony — is on Wednesday.  Thursday is the last day of school.  Thursday is also the day of our party for every teacher, therapist and aid that we can get to our house.  I am so lucky that my friend, Amy, will help with the prep and the hosting.  I can probably do this all myself but there is comfort and familiarity doing it with someone.  I wonder if I should be insisting of learning to do it all myself or if the lesson is in the interdependence that is not a partner.  David and I enjoyed hosting and cooking and prepping.  No wonder there is still the flavor of the old life in making a menu and a shopping list.  This sweet nostalgia stands quite apart from what it feels like to leave Randall School.  I have absolutely no reason to imagine that middle school will not be as wonderful as elementary, but the fear of the unknown gnaws at my boots.

Big breath in, big breath out.

On Saturday, there will be a all-Quest reunion retreat.  It is only one day and I am part of the small committee that is putting it together.  The committee work has been fun and interesting.  My duties — to do two readings and lead the Japanese Crane moving meditation — are not terribly demanding.  I am excited to do them.  It is stepping ever close to where I want to be.  But the day is the end of Quest activities for at least a year.

Our third bedroom, aka Cheshire’s bedroom, has been redecorated.  And yes, this relates to everything I’ve written although I couldn’t have asked for a more abrupt transition.  The feeling of cleaning out the stale Chi from the corners of the room, of moving furniture about and of needing to make it pretty have done just that.  New striped roman shades, a new rug, and new bedding.  There is a small bench that needs the seat recovered but the room is ready.

So much is ready for the new — Julia and middle school, some project or adventure for me to stumble upon and a guest room to fill.  I felt the lifting of grieving last autumn but I feel the anticipation of the next adventure now.

I bring what I am and what I’ve done and all my reasons but I do it now with an unburdened heart.  I am so curious to see what comes.

Posted on by Suzanne Buchko 0

peony & narrative

IMG_2251I wrote an entry — a very long kvetch about all of my very first world problems.  I did not publish it right away because I ran out of steam before it was completely finished.  I expected to do it the next day but I just did have the heart.  By the end of the week, every one of my problems, save changing all my dead light bulbs, was corrected and in addition to acknowledging just how inconsequential my concerns are/were, gratitude had crept in with bells and whistles.  No, nothing is perfection but sometimes there are blessings even in the challenges.

For the months of our cold winter and chilly spring, I’ve been writing and thinking even more than I’ve written it, that if only I could get outside in the dirt and the world would turn green, I would be happier.  Those ‘if only’ wishes rare hold true but here is one that does.

I was ready to dub this my favorite gardening time of the season.  Peonies — four varieties out right this minute — Japanese iris, perennial geranium and another purple whose name I can’t recall.  The intensity of the blues and pinks feed me.  But I feel the same way when the daffodils are out and later on in the summer when the hollyhocks bloom.  I don’t understand not loving a garden.  At least, not for the way that I am made.

Yesterday, I went on the last field trip of elementary school.  We went up to Devil’s Lake — the entire Randall fifth grade, a bit more than 100 kids.  Our kids filled two buses and we saw another 8 or 10 buses up there.  Lots of chaperones to allow for many activity groups.  Lots of kids wanting to spend time together.  I was with a group of 8 girls with two other moms.  The girls decided to hike — half was an easy walk along one side of the lake and the other half was not difficult but a tiring path along higher rocky slopes.  By the end of the day, I was so exhausted that my usual 20 minute nap did nothing to relieve my tired body.  Really brought home the fact that I am in awful shape — as if my carting mulch for the garden has not pointed that out.

Julia did pretty well.  She did really well.  Three years ago, she would not have made it along the easy walk along the lake and would not have had any interest in staying with her group for most of the day. Two years ago, the up and down of the rocky path would have defeated her.  She did do a little complaining and sometimes she was at the back of the pack, but generally she kept up, she was by no means the worst complainer of our group and sometimes she was out in front.  When the hike was over, Julia did not complain at all.  Something she would have done even a year ago.  She was tired like everyone else and afterwards she sat at a picnic table and read as most of her group played a sort of tag football.  Most of the girls from this group were very nice to Julia, keeping her in line, soliciting her opinions and dealing with her outbursts.

First thing this morning she began closing her ears and letting her worst impulses take over.  Where typical early teenage independence and spectrum behavior meet is a hard call and, it goes without saying, that I am not looking to squelch every bit of her spirit.  Still, when I asked her to set the table for breakfast, she took out a spoon and dipped it into the honey jar for a big spoonful.  I don’t want her eating from the honey jar.  Before attempting to set the table she managed two other diversions and, I admit it!, I was ready to blow!

I remembered the seminar from a few weekends ago — Julia was making ME feel badly and it was going to be her job to make me feel better.  There were clothes in my room that needed to be folded and put away and a load in the dryer that was finished.  She had to haul it upstairs and fold all of the clothes and put everything away before breakfast.  She complained a bit, I did not relent.  Then she did it.  And it didn’t take forever — she was hungry.  It wasn’t a perfect job but she got our clothes separated — they were mostly hers — and my socks in my sock drawer.

She had clinic in the afternoon and on our ride over, she started telling me a dinosaur story in her very muddled and without narrative flow way.  I walked her through getting a narrative with an introduction — Mom, I’ve made up a dinosaur story. — characters — of which she was one as a person who could cure a dino with a virus — a problem — the very sick dino — and a solution — pills that she made the dino take.  We ended with a feeling — I felt good — why — because I like making a dinosaur feel better.  This is not complex imbedded story telling but an extension of what she’s done in speech and what we’ve done all year in her weekly paragraph.  It is hard for me to see her progress in this right now, but I am pretty sure I could not have even walked her through a narrative form a while ago — at least not when it was just talking.  Perhaps she was doing it to humor me — so she didn’t have to put away any more clothes.

Later, we did a conversation about me.  What my plans were for her clinic time.  She is sooo not interested — Not because it is me but because she doesn’t recognize that kind of interest as something that will do anything for her.  This interest behavior is very Asperger-like.  I walked her through the interchanges — feeding her questions to ask me and then answering her.  At two points, she generated her own questions which was great.

This is hard.  This can be exhausting.  Please, please, please, let her learn how to be a good friend!

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fair

On the deck, waiting for the school bus.  Julia has taken it home two days this week and it has been ok.  So, yes, I have seen at least one kid move away from her when she gets on — we are not going to change the world.  We, she and I, keep talking and she has a few allys to stand up for her.

For the first time ever, Julia has a great many feelings about school ending.  AND school closes in two weeks.  She walked around the school the other day taking pictures with her iPad and then told me about them when she got home.  She has been crabby and grumpy.  She is telling me that she is excited about middle school but also that she will miss people.  Julia is inhabiting so much more of her world than she did a few years ago, so much more than last year.  (A side note: When Julia’s special ed teacher ask her about being crabby, Julia told her that she was crabby because of her period.  Her period actually ended on her crabby day but what surprises me is that she said that.  I have not talked about hormones effecting behavior either seriously or in jest.  I wonder where she heard it.  And this, just another sign of her being in her world.)

I mulched another part of the front garden for most of the day.  Did three trips to the mulch site — city owned and managed — and loaded up my plastic containers and black leaf bags.  I can only take as much as I can hold in my trunk.  If I use the back of the car, it stinks for most of the summer.  I’ve been doing one or two trips a day and gotten tired and sore.  Evidently the gardening chops are coming back.  Whew.

Much later.  Night now. Sitting outside on the deck in the dark.  It is still delightful!  My neighborhood is as quiet as a small city neighborhood can be.  People walking dogs chatting on phones or walking themselves with partners or friends and doing the same live.  Traffic from the surrounding busier streets and sirens going to our nearby hospitals — sirens and ambulances have such powers of remembrance.  So this is not the country like I imagine my sister’s porch on her farm in Virginia.  This is not a mythical fire escape in Brooklyn, but there are a few stars above, enough to wish on, and the leaves are finally thick enough to muffle the outside world.  I am pretty happy sitting here tapping away.

So, sitting on my deck in the dark tapping away is something that I’ve often longed to do but have kept myself from doing.  All the is conventional in me knows that my mother would have disapproved, and probably David would have disapproved.  And once the mosquitoes come out in full force, I will need no one’s disapproval to send me inside.  But for tonight, for right now, I am grateful for this delicious night.  I am grateful to not care if I am seen and thought odd.  I am grateful for stars and leaves and fresh spread mulch.  I am just grateful.

I read this lovely blog piece this morning “disney das” (http://adiaryofamom.wordpress.com/2014/05/29/disney-das/) — a review on the revised program at Disney for access for people with challenges.  I thought it was pretty evenly written, no rants and few complaints.  I agree with most of it.  Like that writer, Julia and I managed the theme parks pretty well at Christmas.  We were very laid back and Julia is very able to understand that we could sign up for a ride and then come back later, but like the writer, I need to acknowledge that the current policy would have been a night mare when we were there a few years ago.  And I think about those in our position a few years ago, those who will never be in as good a position as we were a few years ago, and wonder if that “happiest-place-on-earth” will even be a possibly for them.  There are always a few comments to that type of blog entry that show a complete lack of understanding of the family that have members with challenges.  The writer was accused of wanting a “better experience” for her children than is possible for other children and of taking more than her fair share of rides when a child with autism is skipped to the front of a long line.  One commenter — parent of a child with a “real” disability which translates to a physical disability — expressed his/her disapproval that the rise of autism diagnoses is the real reason for the change of policy.  If one in  68 kids gets a diagnosis, might that translate to one in 68 disney-visiting families asking for special treatment?  And how is that “fair” to those with “real” disabilities?

I admit to the usual initial feelings of anger and frustration towards these commentors but as I read on, it was the lack of understanding, the lack of generosity and the scarcity thinking of the writers that breaks my heart.  There was unwillingness to stand in the shoes of another.  Selfishness and utter and complete self-absorption.  Most of all, it is a lack of imagination.

Visiting popular theme parks can take planning and strategy for all families, but how many families with typical members plan that same way when they go grocery shopping or holiday visiting to grandparents or to the movies or a sibling’s school play.  How many parents need to scrutinize childcare providers for their 15 year olds or teach their children about safely crossing streets every day for three years.  And all of this kind of planning is easy-peasy compared to the planning that some parents engage in.  And so, that GAC (Guest Assistance Card) at Disney was a gift to those families.  For once, a family could indulge in the pleasures of an amusement park the same way that typical families go food shopping.  I guess to that extent the situations of families with typical members and those with members with disabilities changed places.  It was the typical families who needed to engage in strategy to make their way through possible melt downs  on long lines — still the typical four year old’s melt down is unremarkable compared to a nine year old on the spectrum tantruming.  The families with kids with disabilities was free to indulge in delights the way typical families might go from store to store in a shopping mall — almost unimaginable for many of us.

How to open the hearts of those who feel the pie is too small for pieces for all?  There is enough!  How to build empathy, compassion and community?  Even at a theme park and on a school bus.  Surely, this is what we all need — those who would begrudge Julia and I skipping to the front of the line for “It’s a small world” and me who can easily conjure up a dozen uncomfortable experiences to “help” the complainers understand my world.

Posted on by Suzanne Buchko 1

all’s well . . .

All’s well . . . although I can’t be sure it will  end well.  For now, all’s well.  Small gratitudes are gratitudes all the same.

It has been a week since I heard from “downtown” — the school’s district’s office that is running the music experience in July.  I wrote an email to the woman I spoke to last week:

Dear B,

We spoke on the 13th about finding support for my daughter, J, so that she can participate in the summer music experience.  I wanted to check in with you to find out how that is coming along.  If you have difficulty finding an aide for her, I should be able to come up with a short list of people who would be interested in doing it.

Thanks for your help,

S

The response came quickly, about a half hour later:

Hi S.

Thank you for checking in on this.  I am working with our Human Resources Department to secure an SEA; they’ll use the list of applicants for summer school.  I sent an email this morning checking on the status and will let you know as soon as I can when we’ve secured an SEA for Julia.

Thanks very much, b

Later, I wrote back with the name of the person who has been her strings aide all year.  We — myself and the SEA — would love to have her spend the music experience with Julia but I don’t really expect that the PTB will take my suggestion.  Still, it is worth a try.  I am just so relieved that I didn’t have to put on battle gear.  I will send our communication notebook and ask whoever the SEA is to let me know how the class goes.  I would not be surprised if there are still some lumps along the road but the big barrier to Julia’s attendance has been removed.

Relief floods in.

Just before I picked Julia up from school, I talked to her principal.  He had called as I was headed to school and I was thankful that he initiated the calling.  On Friday, I sent him an email about the bullying and he responded during the weekend that he would explore the issues.

He talked to all the kids who were involved in some way.  Julia and her supporters told the same story, as did the fourth graders who were bully followers.  The perpetrator did not deny any of the behavior and did not come up with a good reason for it.  He is not a powerful or popular kid and Julia is not his only target.  It sounded like some of his targets are bigger than he is and the principal pointed out to this boy that it was really not in his best interest to push around bigger and stronger kids.  (One of my concerns is that Julia, for all her training to “walk away” or “report to an adult” may one day find the end of her rope and deck the bully.  She is fully capable of doing that.  We cannot forget that she used to fight for food and win.) The boy was told he did something wrong and that his parents were called.  At that point, the boy broke down and cried although I expect it was from the anticipation of parental correction and not from the realization of his wrongdoing.  The hope is that if his behavior changes the younger boys following him will back off.  I know that I wrote that I wanted to punch him out, I really don’t want to bring him down in any way.  Rather, I want  to get him to stop doing what he is doing.  He was also told that if news of continued bullying trickled down to the principal again, that being removed from the bus and suspension were apt descriptions of consequences.

I hope that this solves our bus bully problems for the semester.  I am however, stymied as to the reason this boy does what he does.  I know, I know the reasons in text-book phycology language but to see it played out is bewildering to me.  I was either raised right or raised much too timid but the urge to exert power over those with vulnerabilities never existed in me.  However, in the interest of full disclosure, I admit that I did attack one neighborhood boy when I was in fourth or fifth grade.

Tommy Sopko lived three doors down from our family and he was one of a bunch of brothers.  He was in my class at St. Thomas the Apostle elementary school and had terrorized me since my arrival there in third grade.  I don’t know if I had been told or it was instinctual but I knew that my stutter made me a prime target for what we called ‘teasing’ of any kind.  I got out of Tommy’s way, said nothing, never reported it, cried a few times at home and was told or ignore the ‘teasing.’  Tommy was a bully, to be sure.

One very rainy morning, I was walking to school with my brother who was 2 years behind me in school, when Tommy fell in behind us and started his socially acceptable banter, except this time he started making fun of my brother — over what, I don’t remember.  My brother, for any of his little brother faults, had no obvious target pinned on his back.  I distinctly remember being in a irritable mood — rain, sharing an umbrella, heavy book bag and who know what little brother complaints.  Tommy was on our heels, under the back of our umbrella, taunting, teasing, bullying, first me and then my brother.  At that moment, I had enough and I had a weapon.  I turned on him and started hitting him with the umbrella.  I remember his stunned face!  And then his running from us.  I do also remember the powerful feelings coursing through me.

One of his parents came over to our house that evening, complaining about my behavior.  I suspect that I must have left some mark with my umbrella.  I can’t imagine that he would have told his parents of being beat up by a girl otherwise.  I was asked why I beat up Tommy on the way to school and I think I stuttered out my reasons.  I have no idea what was said, but I did not apologize (timid but stubborn), I was not punished after they left and was not told to keep my umbrella to myself.

What I felt then was a self-righteous victory over an oppressor, but it was a feeling of power.  I wonder how it compares with our bully’s feeling.  Could telling Julia that she is stupid feel as good as beating up Tommy Sopko with an umbrella?

Posted on by Suzanne Buchko 1

ah-ha

Yesterday, Julia rode the school bus home after a splendid day at a field trip — civil war reenactment camp.  I chaperoned and got to spend the day with kids and teachers and parents.  All rather blissful even including the canon firings which are extremely tough on Julia, but she watched the “soldiers” load the cannon with arms around me, one ear pressed to my chest and my hands firmly over her other ear.  The sound was still painful for her but she recovered . . . well, like a resilient kid, which is a description that could be called a miracle.

Then, on the school bus home there was more bullying.  It was not an isolated event.  Julia’s has gotten good at ignoring it and her allies — especially two boys from her class — are good at standing up for her; however, the behavior seems to be escalating.  The perpetrators laughed at Julia, called her names (stupid, I think) and said that she is never going to graduate. (An aside here — Some of the remembered damage done to Julia in China was being called ugly and stupid which she was told were the reasons that she was not sent to school with her bunk mate.)

At the bus stop, Julia got off with the two boys who are classmates.  The boys pointed the perpetrators out to me.  The kids they pointed out laughed and gave us all the finger.  I don’t know these bad kids (yes, to me at this instant these are evil, bad kids with NO redeeming qualities) although they do not seem to fear that I might report them.  When my sitter reported this same thing to me last Friday, I didn’t want to pursue it.  It is so close to the end of school and Julia doesn’t ride the bus home much.  I was going to let it slide.  Perhaps it would get better, perhaps it would go away if we all just ignored it, but perhaps it is time to ask for some consequences.

Julia  tells me that it isn’t so bad in the morning but in the afternoon (and she is only taking the bus home once or twice a week) they are really mean.  Julia would rather have me drive her to and from school.  Listening to one of Julia’s friends talk about the bad kids, I could see that he felt helpless to do anything to help Julia.

I struggle to be compassionate.  I want to punch out those kids!

And then today, I spent the day at the first of a two-day seminar given by members of PACE Place (http://www.paceplace.org).  They talked about what I’ve been talking about with out attachment therapist for years.  The relationship between attachment and autism.  Of course, I see the relationship because Julia was so deprived of relationship in China and to work on her neurological differences labeled as autism, we all had to address her lack of attachment, but these people talked about the inability to form age appropriate, healthy attachments in ALL people on the spectrum.  It is very exciting.  I think I sat nodding my head the entire day!

This team was also able to use workshop games with the group of 60 IDS employees (therapist, psychologists and other helping professionals) and parents as effectively as some of the best theater workshops I’ve been part of.  The day was one ah-ha moment after another — lots of learning physically through metaphor and reflection. I was only going to go to one day because I didn’t want to leave Julia with a sitter for two days, but what I am learning is worth the missed weekend for both of us and thank goodness, her sitter is free tomorrow.

Finally, close to the end of the day, I had my huge ah-ha moment.  I can’t connect the dots as to how I got there, but something was said that set off a chain of thoughts and I realized that Julia is learning to play her cello at the same rate as her peers (more or less) because somehow she started at the beginning of learning music at the same time as her peers.  This is the first time that she is starting from zero with the kids around her.  (Oy, I’m not being articulate here.  Damn.)  All the other things we taught her — English, numbers, reading, writing, APPROPRIATE BEHAVIOR — her peers were getting lessons in all those things years and years before her.  No one gave her any of the basics — no one counted her toes, cheered her first steps, or ran to her crib when she cried.  No one read books to her, looked at her when they gave her a bottle or taught her the tools of sharing.  Or gave her enough to eat, for that matter.  Julia has been playing a game of catch up since I met her when she was five and a half.

But most of the kids in her class were not handed a violin or cello any sooner than she was.   She still needs to run to catch up with attention and focus even learning music, and she has not paid attention to music like most of her peers, but somehow she is not the same five and a half years behind in music that she was with almost everything else except for her art.

And so, what does this mean?  I am having trouble bringing the lines together in my head.  I don’t mean to overstate what I see.  She and I, and her aide in strings class and her cello teacher, work very, very hard to make cello possible.  But the fact remains that she is learning more like her typically developing peers than ever before.

I have struggled with the question of Julia’s ‘prognosis.’  Julia has not been considered high functioning but she is not just lower functioning.  No one has felt comfortable labeling her because her development has been so interestingly inconsistent and her gains so surprising. I am not the only one who has noticed the spark in her soul.  I still don’t know how to make up for, catch her up for those years with me that she missed, but through her cello we are experiencing her starting from a beginning and learning and staying abreast of the running herd.

Ah-ha.

Posted on by Suzanne Buchko 2

files

“It’s the heart that knows the path. The mind is just there to organize the steps.” ~  Jeff Brown

I am tired, sleepy tired.  Is it related to the scratchy throat that I’ve had the past few days?  I certainly have done nothing to exhaust myself — unfortunate that because I am in dire need of physical activity.  I promise myself to go out in to the garden and work but . . . yeah, but the weather.  Saving grace is signing up for the swim club this summer.  The pool has a daily water aerobics class that I am planning to take.  Last year, our first year at the pool, I learned about the class after I had scheduled Julia’s lessons, therapies, and appointments.  I could at best make it to the class three times a week.  “At best” meaning usually twice, sometimes once a week.  The class is written into my planning this year, so I expect to hit many more classes.  Three a week?

An email from one of my LEND mentors reminded me of the now of many endings.  My LEND experience that I stretched over four years is over.  So, is the two-year Quest experience.  My online classes are over on Friday, and my mother’s estate is a hair close to finally and completely closing after five years.  So, it should not have been any sort of surprise that I’ve been having transitional dreams — endless final exam and first night performances — and I’ve begun a very deep cleaning of my desk and file draws.

Seemingly spontaneously, I began culling, sorting and preparing Julia’s fifth grade papers and setting up summer and middle school files yesterday.  I thought I was just doing a few files, but as I was moving papers and files around I realized that I had not reconsidered my file organization since the first organization during the year after David died.  Four years later, there is stuff I don’t want, stuff to put in long time storage, stuff to rearrange and make useful, dear stuff that I have no need for but that I pause over and wonder when if ever I will part with it, and a file draw full of my mother’s estate matters that needs that same culling and sorting that Julia’s school work needed.  The life business files — bills, pensions, investments, taxes, medical records, papers related to things I own, etc. — have become awkward and need revision.  These were the papers that were split between David’s filings and my own four years ago.  I didn’t even want to combine them when I did it — still in the magical thinking phase.  I always meant to re-organize when I figured out what I needed, what I didn’t and how I needed what I needed.  Then life got busy again and it was easier to keep stuffing the existing files than to deal with reorganization.

So, wow.  It takes a long time to be organically ready to organize.  There had to be a whole other cycle of experiences before I could make sense of living day to day and keeping track of life’s necessities.  It feels like a long time, a long road.   I wish it could have been shorter, efficient, more streamlined but it has taken as long as it had to take.  I’ve heard/read the comment, “In god’s time” and thought that I understood what it meant, but now the understanding is deeper and wider. “God’s time” is all time and no time.  It is not the time we track it on clocks and calendars.  So, my heart continues to chart the path and this tonight tired mind catalogues and organizes and makes sure that the bills are paid.

Posted on by Suzanne Buchko 0

music camp

Today, someone from the school district called in answer to my email.  I enrolled Julia is a 2- week summer music experience/camp run by the district.  I had heard about the camp but hadn’t imagined that Julia could do it.  Her strings teacher, her music aide and her special ed teacher thought it was a wonderful idea, and buoyed by their enthusiasm, I did the online enrollment.

The rather cheery woman who called first made sure that I was enrolling a special ed student. Yes, I was.  She then explained that my daughter could only take the music camp if she had participated in the strings program in fifth grade.  Yes, she had.  The woman was silent for a moment.  Was she surprised about music and special ed? I am not sure.  Then went on to tell me that Julia’s IEP would not be implemented during summer enrichment programs because the programs could not afford services like PT and OT and Speech.  She said that Julia could not get all the services that she got during the school year and that they only offered “reasonable accommodation” for summer school.  I asked what the accommodation was and she put some words together that explained nothing.  Then she asked if I understood.

To back up some, I have been through this a few weeks ago about summer school.  There are “reasonable accommodations” for summer school but when it was explained to me it sounded like “reasonable accommodations” were absolutely no accommodations.  Well, perhaps a seat in the front of the room, although the summer school person was not sure about that.  I decided that summer school would not work for us — for fifth grade math, they planned to work on math facts and Julia has those down cold — and so did not push them on accommodation.

For music camp, however, I couldn’t let her off so easily.  Did I understand “reasonable accommodation”?  No.  Again, I stopped her.  “Can’t implement . . “ she started up again and I said that I wasn’t looking for her IEP services just support enough for Julia to participate.  In other words, she would need an aide.  “We don’t have money for an aide” and suggested that the needs of special ed students could ruin the program.  Guilt flooded my senses for a very quick moment.  For a split second, I saw the stampede of IEP carrying string players killing the MMSD summer music enrichment experience.

Yeah, right.

On reflection, I could have asked her just how many special ed students try to enroll in the camp each year?  In our school’s case, Julia is the only special ed student in strings this year at her school.  When I asked about strings last year for Julia, I was told that there was another special ed student at one time, and as it turned out, I knew the family.  So, that is two kids with IEPs in the strings class in four or five years at Randall.

Julia was also the only person who brought an aide to the Strings Festival at West High  during which all the kids who feed into West High School from fifth to eighth grade play together.  I think that there are just two of these concerts — east and west, although there may be one or two more.  Even if there were five concerts — one for each high school — at one special ed student a concert, there might potentially five special ed strings players who would want to join the camp and need some meaningful accommodation.  Even imagining that all five enrolled in the camp, it would not necessarily mean that the program would be burdened with paying for five aides or some other expensive accommodation.  In Julia’s case, she could easily share an aide with another student.  Any kid who made it through fifth grade strings and wanted to play in the summer would probably be motivated to be as independent as possible.

But back to our conversation — I said that I didn’t think — in a very hesitant voice — that they could offer this a camp to the entire district and not offer Julia support.  Wasn’t she protected by the IDEA?  At the mention of law, the conversation shifted.  The nice woman told me that she didn’t think they were required to offer anything in the summer but that instead of telling me that they “couldn’t” she “would check” — with whom she did not say — “and get back to” me.

I had caught her out.  I googled “summer school exception” and IDEA, and other terms to find some language and found nothing.  I called an old friend and she called an expert and sure enough there is language that was inserted in to the IDEA from Section 504 of the ADA that Julia should have an equal opportunity to participate in school sponsored activities.

So, now I wait to see if and when the very nice lady gets back to me.  I am hoping that the mere suggestion that I have some knowledge spurs the PTB to do the right thing, although I am armed and ready to move on and insist if it comes to that.  I grieve for the child who is denied this and other opportunities because their parents are not strong advocates.  Thank goodness, that Julia is not one of them.

And on another note — Spring thunder storms have begun and this is the first year that the first crack of thunder did not send Julia into my bed.  It was not fierce tonight, and I expect that really bad storms will wake her and speed her into my bed, but not tonight.  The trauma that so controlled her life is easing, or possibly it is safer in a Gryffindor bedroom than in my bedroom.

Posted on by Suzanne Buchko 2