music camp

Yesterday was our busiest day of summer. Julia’s schedule was: dentist, cello lesson, swimming lesson, strings camp, IDS clinic. Swim lesson and strings camp were new. I was anxious. Julia was fine at swim lesson. She seemed to be listening and doing as told. There were three kids in her class which is perfect for her to handle the class without additional help.

At least I hope so. The instructor looked a bit anxious when I let him know that Julia is on the spectrum but he took the initiative and did not let her drift.

Kati asked about what happened with strings experience, aka music camp.  The beginning of the story is here (https://myyearofchasingjoy.wordpress.com/2014/05/13/music-camp/).  An update is here (https://myyearofchasingjoy.wordpress.com/2014/05/20/alls-well/). [I haven’t figured out how to use the link button.]

The further update is that at the graduation party, Victoria, who went to strings class all year with Julia as well as the district strings concert at West High, told me that she was going to be Julia’s aide during strings camp. (All but the first day) I didn’t think this would happen. I suggested Victoria to my district contact but I didn’t push for her, mainly because the district does not seem to like to support their special ed students for summer enrichment classes. I am aware that just getting Julia into the class/camp/experience could be a small loss of face for those who told me it couldn’t be done. I wanted Julia’s entry into this experience to be smooth because I intend to make use of enrichment classes for other summers.

But I am overjoyed that Julia will be with Victoria who she has known for four years, who did strings class with her and who taught her to knit this year. Victoria was still on vacation on Monday, so Julia’s reading teacher for the past two years stepped in for the day. From what I heard, there were a few bumps — Julia talked at times when the teacher was talking and some of the music was challenging — but none of this sounded out of the ordinary. Considering that Julia has been studying for less than a year and many of the kids at the camp are more experienced, she is right on track.

I could not be more grateful for these extraordinary women who work so hard during the school year and are willing to give up part of their summer to be with Julia and help her through this new experience.

And just to say this very clearly: There is no summer school exception to the IDEA. If a special ed student needs to do summer academic work or enrichment classes and those resources are run by the school district, a student’s needs must be accommodated under federal law. This does not mean that a student’s entire IEP will be implemented — so, no speech therapy or PT or OT, but a student must be accommodated in the class they are in. In Julia’s case, this means that she needs an aide to be with her during strings camp. She does not need a special curriculum or any other accommodation and I don’t know whether they could refuse a student with those needs. I want to encourage other families with special ed students to use the resources that their school districts have. I admit to feeling the legal passions rise — issues like this could put me back in an advocate’s role.

We are still in bed this morning. Julia beginning to awaken. She was rightfully exhausted last night. Today’s swim lesson and music camp looks like a piece of cake by comparison. I was pretty exhausted too — added to the taxi chores and a bit of anxiety about Julia’s new experiences, I spent my free time yesterday finding a eye glasses service who would put Julia’s therapy lens into new frames. A few days ago, she broke her “first” frames. Because they are costume frames — Harry Potter glasses — it was a challenge finding a replacement. Five dollar frames don’t come with a lot of markings. I was successful in finding some of the same size to accommodate lens but of course, the lens had to be popped out of the old and into the new frames. Two places refused to do it. I was trying to avoid sending the frames to Milwaukee where it is usually done. The third accepted the challenge, warned me that the lens could chip or break and did it. It worked, the glasses fit and we are back in business.

I ended the day with somewhat of a hangover. Anxiety over new adventures? Anxiety over the glasses? Exhausted from my choice of joy this weekend? Coming down from a very social weekend? Feeling another death anniversary pass? Whatever the reason, I felt the dip in spirits. I was tired enough to wet my feet in deeper water of despair and depression and felt drawn to embrace the sad waters, but . . . but recognized where I could go and knew that if I just got to bed and closed my eyes, I would recover some equilibrium. I don’t mean that I was running away from sadness or anxiety. The weekend, the anniversary, the new experiences, the busy day’s schedule, anxiety over Julia’s ability to meet the challenges, even fixing the glasses were real causes for what I felt, but I did not need to globalize it and imagine that days would always be overfilled or Julia’s days would always be challenging or that she would be breaking her glasses again very soon or that I needed to be thrown into the aftermath of great loss again soon. Silly, I know, in part, where where my mind can turn to especially when I am tired.

So, I went to bed. Early. Thunder storms at midnight brought Julia into my bed and we needed a long guided meditation to get us back to sleep. I had a weird dream which I may describe if I can remember enough of it that stirred up feelings of abandonment and loss but this morning, in the cool, sunny morning, what upset my spirit only informs me.

Posted on by Suzanne Buchko 0

5 july

Hand print on my heart.

Happiness. Joy. Is a decision. Not always, mind you. Joy takes energy. Joy takes resilience and power.

Today, I am choosing to get out of bed, to pick up eggs and milk, to do our daily school work and practice cello, to weed, to bake peanut butter cookies, to have supper with Robert and Mary and tonight to make deviled eggs for tomorrow’s brunch at Amy’s house. All of this is a choice. I could just as easily have limped through the day, let Julia do as she wants, probably play on her iPad all day, and get take out for supper. Choice is something that I have now and I am very grateful for it. Four years ago, three years, ago, two years ago I had few choices that involved joy. Last year, my choices began again. Although they felt narrow. My doors are open much wider now.

I chose to find joy. It still takes effort, like exercise, like running. Perhaps one day, once again, it will be my default setting. Right now, I have the energy to make it a choice.

Posted on by Suzanne Buchko 1

the fourth

So, I don’t feel like hiding under the covers but I am still not up for sending best wishes for the fourth. Today, four years ago was David’s last day on earth. I woke up this morning and assessed my feelings. Like stretching muscles the morning after strenuous activity, I stretched my heart, my soul, my spirit . . . something inside . . . to see how I felt. How much I felt. What I felt. And what that feeling felt like.

No searing pain. I didn’t expect any but I was still relieved to be without those sharp pains of loss. Without thought, I have been preparing and testing myself for the last week. Without thought, I re-constructed the last days, remembering what we ate, the yellow dress that Julia wore that fourth that was bought to a bar-b-Q in Jersey, how hot it was and whether I went to church that Sunday.

The other evening I went to a movie with my neighbor and afterwards we had dessert. For the first time, she told me about the night that David collapsed and was taken into the hospital for the last time. I called 911 and then I called her and asked her to stay with Julia. She came right over and I did not return until the morning. Julia was asleep when she came over and she expected to camp out on my couch, but a bit later there was a thunder storm and Julia never slept through thunder storms in those days. Julia called out for me and Maria went upstairs. She knew that Julia would be startled to see her and Julia greeted her with, “Go away.” Maria talked to her for awhile and they went downstairs and watched Howl’s Moving Castle. Julia never went back to sleep and was up and playing when I came home in the morning.

I had no idea that there was thunder that night. I was only aware of the struggle — the ER docs did not know what to do for David’s pain which seemed to increase by the moment. There was a scramble to get in touch with the heart team, and then when they knew it was an infected gall bladder, they did not know whether to operate or try to stem the infection. In the end, surgery was deemed to risky although in retrospect . . . . well, the antibiotics just didn’t do the job.

They re-started the heart at least once that night, something I didn’t find out about until after David’s death. Not that I was not told. I expect that I was told, I have no memory of it.

Two other things from that night which was actually the week before the fourth. One, I had been on a longish fast, more than 4 days although I don’t remember how many more. As I drove to the hospital after the ambulance left our house, I started to have sharp stomach pains. I have always been careful about fasting. I’ve never fasted in times of stress. I knew that I was in pain because my body could not respond the way it wanted in the fasting state. When I got to the ER, I made it into the registration desk and sat down. I told the nurse why I was there and then asked for juice. The nurse asked something and I told her about the fast and the pains and she moved very quickly to get what I asked. A container of OJ and the pain disappeared. It was a lesson for me in vulnerability and understanding. A lesson that I would be learning over and over in the days to come.

Second, as I drove home from the hospital in the early light of morning, reeling in feelings centered on fear, I felt an injection of power straight into my veins. My ability to handle crisis and stress had been tested but for a first time, I acknowledged my ability to cope with what was thrown at me. I remember feeling that there was nothing that I could not do. I had gotten David to the hospital when he needed it and he had survived the night. It would be the last sense of power that I would feel for a long time although I can see now that there was power in everything I did for the next three years. Power that supported and kept me going. It feels good to recognize it and name it, even four years later.

Posted on by Suzanne Buchko 4

unpacking

Started 29 June and finished 1 July.

I always underestimate how much time it takes to “unpack” from traveling. There is the physical unpacking — the last vacation wash was folded and drawer-ed yesterday, books, toys and nonpermanent items in the toiletry pouch were homed on Thursday. There is the catching up on sleep — can one every really “catch up”? — made acute by the unlocking the door to home just after 3 in the morning. And then, there is the other unpacking which in our house means establishing a new routine and re-establishing the discipline necessary to be comfortable together. On that point, we’ve stumbled.

Julia woke up on Wednesday and seemed to have lost the power of hearing where I am concerned. I needed to ask for anything, including joining me at the dinner table, three, four or five times. Considering that I was in no way well rested, my response was not always compassionate and enlightened. Julia seemed centered on her iPad and on the Harry Potter Lego game that one of her caregivers had put on as an indulgence. I don’t think the game has any intrinsic value — I tend to look for something, at least logic and problem solving in her games — and regardless of the value, it became an obsession during traveling. I took away the iPad for the remainder of the day which is our usual consequence for not listening. Julia got mad and was mean to me. I took it away for another day. She continued mean behavior and disregarded any of my directions and soon we were up to a two-week iPad furlough. It was then that I realized that the deprivation was opportunity. Julia needed iPad separation — during any travel, I let her spend much more time on the iPad than usual and the only way to change the habit no matter how short a time it took to establish is cold turkey withdrawal of the machine.

And so, we are in our fourth day iPad-free and it is almost lovely. Julia is drawing more, reading more and knitting more. She reaches for her Rapunzel doll or her dragon instead of the machine. She decided to do some sewing on her Rapunzel doll’s clothes. I don’t remember writing about her interest in sewing. A few months ago, Julia decided to mend her socks. I offered very brief instructions — she wanted no more — and provided needles and thread in a sewing box. Since that time, she had mended holes in socks and sewed up seams in shirts. She wants no advice from me and I have no problem letting her explore this on her own. There was a small tear in Rapunzel’s dress which she repaired and then she made the hem of the dress more secure. Again, I offered to show her a few things about sewing and offer was refused. Perhaps some material and a good pair scissors will appear near the sewing box.

One of the tasks I had not gotten to this spring wa s to finish the basement cleaning begun two years ago. I’ve worked hard on it and I’ve worked casually. Since the beginning of this year, however, I’ve put far too many things in the basement which should be on their way to be thrown away or recycled. Thus, the need for some plan to get rid of or store what is piled in the middle of the floor. A portion of that pile consists of old computer parts — 2 CPU’s — does anyone know what a CPU is? — two printers, monitors, 4 keyboards and numerous speakers. David and I were early computer buyers and traded up at appropriate intervals; however, in the last few years I spent no time in front of my little flat screen console and after Julia got her iPad, there was no reason for her to be on it either. When we first moved to Madison, we had two stand alone computer set ups — David’s upstairs in the third bedroom and the family computer, or my computer, in the playroom. I disassembled David’s computer when the floors were to be sanded and never put it back and one of this year’s tasks was to clean up the CPUs and get rid of the equipment. I did the clean out in the Spring and then stored put it downstairs. My current resolve is to do something, however small, everyday in the cellar to get it cleaned out and up. On one hand this is kind of silly. Sweeping in front of the dryer or picking up all of the ZhuZhu pet runs to put in one container do little towards an clear-of-unnecessary-junk cellar, but I do get rather overwhelmed when I look at what seems to be a great mess. Even an easy task clears away or organizes a little mess. Eventually . . .

We had some unaccounted for time on Sunday and I looked up places to recycle computers. The almost local Goodwill takes most components and Julia and I loaded up the trunk and went to make the drop off. I had a moment of breathless hesitation. A spot of Grief passing over an otherwise productive activity. One of the fascinating, ugly things about grieving is how unexpected places or people or things trigger the punch in the stomach response. At almost four years since David’s death, it is more of a twinge than a punch but it was something. During that year “of magical thinking” after David died, I imagined that had he walked back into the house at any time, I could have caught him up on our everything in a few minutes. Then it was over dinner. Then suddenly, it would take much longer. I know, I know, he is not coming back but the space between us, the time, the articles of living the way we always lived change, morph, grow into such differences as not to be recognized.

Yes, we were early computer owners but David was very late to the laptop world. He liked sitting at a desk and so he found no need to move on to what was portable. I bought him his first notebook the Christmas before he died. I had not thought as carefully as it might seem but it was a good gift. He had plenty of hospital time, beginning that January, and portable began to make sense even to him. By the beginning of 2010, I was ready to replace my 4 or 5 year old Dell laptop. I bought my MacBook days before the heart transplant and spend the days of the hospital vigil learning to use this machine. I remember wishing that I had waited because taking in anything new seemed impossible at that time but my need to constantly tap on keys probably pushed me into efficient use sooner than had the time been ordinary.

So, now there are no stand alone computers in my house. I have my laptop, Julia has her iPad. I am looking forward to getting an iPad full size or mini in the next year to travel with. We also don’t have a landline phone and no fax machine. My router and modem – also new – are connected to everything via WiFi. My house seems to be less wired than my parents. No landline phone would surprise even my grandmother. And of course, it has been this way for a few months and growing in this direction for a few years but it was the separation of me from the machines in the basement that forced the discovery of this revolution.

And it makes me a little sad. Perhaps because it is July, perhaps just more change, perhaps because, although feeling stronger and full of energy there are still embers of grief ever ready to spring back into a roaring blaze — well, a small camp fire in the woods at this point. And it is the beginning of July.

Posted on by Suzanne Buchko 1

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.

Posted on by Suzanne Buchko 0

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