foibles

How to explain utter stupidity.

Julia and I were at the swim club almost ready to leave for her clinic time. She got in the back seat. I was about to get into the front seat when Julia asked for her glasses. She broke her glasses for the third time last Thursday a week after she got them. We were still using the costume frames which had gotten her through the winter and spring. But in June she broke the side piece off the original pair of frames when she was trying to bend it. Can’t bend such cheap metal. I found a similar pair online ordered it and changed out the lens but in another two weeks she broke it again. I took partial blame for that break because Julia lens are prisms, the glasses not corrective but therapeutic. The prism have a specific orientation which I forgot about when I asked a local eye glass store to put the lens in the new frame. Perhaps she fooled with the side piece until it broke because the lens were uncomfortable.

I bought a third frame and this time sent it to Milwaukee where the lens were made. The glasses were back in a week with the lens properly installed. And then Julia fooled with the side pieces again and again broke the frames. I had already made the decision to get her sturdy, conventional frames when we see the eye doc next week and was only hoping to use the third pair until we got the new glasses. Breaking the third pair meant was due not to uncomfortable glasses but an obsession of bending the side pieces over and over again when Julia took them off getting ready for bed. She admitted that she liked the bending. Autism can blind side me at a moment’s notice.

I taped the side arm onto the front of the frame and made Julia wear those glasses. She had a very hard time keeping them on but there you have natural consequences. We went to a glasses place in town because although her eye doc is in Chicago I was determined that the glasses would be made and fitted in Madison. We had gone to a store at Hilldale a few weeks ago and began looking at frames at which point Julia refused to look at anything else but round harry potter type frames. We found a few that were plastic, round and very expensive but I was willing to consider them if she would wear them. Last Saturday,we revisited the store to pick out frames so that they could be ordered and ready when we had Julia’s prescription. This time she didn’t want round plastic frames even though I had told her that with the breaking of the third frame, I was going for sturdy and something that would not tempt her to play with the arms. I wanted to get as far from the HP glasses as possible. She wanted wire frames. I was almost ready to leave the store and revisit another day when she put on a pair of purple metal frames and declared that she liked them. The frames are not round or in any way resemble HP glasses. They are sturdy.

While we were at the store I asked if there was anyway that they could improve on the awful taping job I did on the broken frames. Because these are therapeutic glasses I didn’t want her to miss the time wearing them. Natural consequences be damned! A very sweet woman took on the challenge. Using thin plastic tubing she put some on the arm and some of what was left of the connecting hinge. Then she heated both ends and put them together. Then she retaped, doing a much better job than I did and heated it all again. The results are somewhat sturdier than what I managed to do and Julia says they are more comfortable. In an effort to have glasses time from now until her new pair arrives, she does not wear them when she is alone. So the glasses stay with me when she goes up to bed and when I am taking my water aerobics class.

And so . . . yesterday as we were getting into the car after swimming, Julia asked to put on her glasses. The glasses were on my dash board and I was half into the car. I threw my swim bag into the passenger seat, carefully placed my laptop on top of the car and reached for the glasses and put them on her. What happened next is sort of a blur. You know, all those things you do automatically, like retrieving the laptop from the car hood and carefully placing it on the passenger seat in my car. I guess I didn’t do that. Of course, I almost never leave anything on the roof of my car so I had very little practice automatically retrieving. And oh, the operating words are ‘almost never.’

When we arrived at IDS clinic, no laptop was beside me. I retraced my steps expecting to find my crumpled electronic companion crushed and broken in the swim club parking lot but when I got there it wasn’t there. It was not on the grass or under another car, no one had turned it into the front desk and it wasn’t anywhere on the surrounding streets. The next day no one had turned it into the police. Just gone. Which is kinda spooky. The Shorewood Swim Club is the kind of place where spare change and single socks are turned in.

I needed to moan. I remembered that this was the laptop that was new during David’s transplant and I learned and set it up during the days of hospital sitting. I could recite other nostalgic remembering but after some groaning to Cheshire it was over. I have a backup that is two weeks old, my purse will suffer (I had been congratulating myself for very low expenses this summer. So much for silly pride ), I had a plan to use that laptop as an at home machine and buy as iPad for traveling soon. I have had that plan for a few months and been thinking “soon” for awhile now. But it will be exciting having a ‘latest’ model with the new bells and whistles. And as for uncanny luck, last weekend when I was having trouble with the tracking pad, I managed to print out all of my passwords. Here are a few sheets that I’ve made great use of in the last 24 hours.

The biggest fall out apart from the prospect of blowing the economical summer is this soup that I had started on Tuesday morning. It is an African chicken and peanut soup with a tomato and coconut base. Julia loves it. The most important part to gettin’ it right is to put in the correct spices in the correct amounts. There were only two steps left to do when I left the house on Tuesday morning. One being spicing the soup. Unfortunately, the recipe was on my computer, and a thorough search later in the day proved fruitless. And so, a mostly made pot of soup sits in the frig awaiting the dumping of the backup into the new machine.

Update: I used Julia’s iPad for two days as my sole computer and it wasn’t bad. I was not ready to give up the roominess of a laptop to store all my odds and ends, but I was happier than I thought I was going to be. An iPad and a keyboard would be great to travel with.

I bought a new laptop — the newest MacBook Pro with Retina. The model has been very recently updates. It is much like my old model but tweaked to be quicker and slimmer (umm, I’d like to be tweaked to be quicker and slimmer.). I haven’t restored my backups, so I am without music and pictures and documents. But, at least I am back to pecking away at the keys.

I have been too preoccupied to find time and energy to write. I didn’t expect this would be a re-entry post but it is. Such foibles. Such foolishness.

Posted on 22 August 201417 April 2016 by Suzanne Buchko 3

question of balance

The summer is slipping by. I begin entries and never finish. When I get back to them, they no longer seem interesting or relevant. So this is mostly a catch-up in an attempt to begin again.

The summer’s curriculum seems to be producing progress — borrowing and carrying over seem to be imbedded, counting money up to $2.00 is coming along and she is getting better at our formulaic word problems. Julia continues to graze as she reads. She picks up books that she knows or doesn’t know and thumbs through and reads a page or two. We do read in the more traditional way together, but if she read from beginning to end by herself . . . I don’t know whether to just allow grazing when we are not reading together and hope that she comes round to wanting to know whole stories or to somehow make her change. I have no idea of how so the point might be moot.

Drawing is exploding mostly due to private art lessons with Julia’s Randall art teacher. Kati is amazing. She knows art and what kids do and she knows Julia. It is clear that Julia is ready to learn about her art — how to draw, make prints, layer on color — and I cannot do it. I am so grateful that Kati is in our lives and I hope that we keep collecting wonderful people who can push Julia on.

An example: a few weeks ago, Katie had Julia draw various views of her cello — front, back, side, 3/4 view. They worked on the exercise for two week. The first week, Julia did nothing when Kati wasn’t there, but after the second week, bits of the lesson began appearing in Julia’s day to day drawing. She drew a picture of herself during therapy with Marilyn. Julia has not worked on faces and so is usually not pleased with her work. Her faces are usually full on and make no attempt to capture someone. The picture she worked on that day had her in 3/4 view with her glasses on. She did not quite get the nose and mouth but she had her eyes and glasses right on.

And Julia’s glasses. Oy! She broke the first pair’s side pieces. Not surprising. These are costume glasses and she has worn them everyday since November. We are scheduled for a check up and probably new lens in the fall so I didn’t want to find new frames and have new lens made. I found another costume pair and had the lens fitted in. Those were broken in less than two weeks. When I went to buy a third frame, I realized that her lens, being prisms, have a particular orientation in the frame and she may have found the second pair totally uncomfortable because they were not set correctly. The third pair is in Milwaukee being set by the person who made them to begin with. My take away from this is (1) to move to real frames, probably plastic which can take some wear and tear and (2) to find someone in town to make them up.

We both continue to improve in our knitting. Julia is making a blanket for Lizzy, the dinosaur, and I am making fingerless gloves. Both incredibly easy and straight forward. I am both looking forward to and delaying moving on to more challenging projects.

I attended my first Buddhist retreat. Non-residential and silent, three days of sitting, walking and listening to Sharon Saltzberg. I signed up without really knowing what it was like and was apprehensive the first day. The silence made it easy to begin. No need for small talk or the nervous energy of politeness. I did not realize that the teaching would be about meditation technique — no philosophy for its own sake – which was wonderful! I’ve needed exactly that for a bit less than a year now. Sharon’s emphasis is loving kindness meditation although she’s spent some time talking about mindfulness. It is like being corrected while doing barre work in a ballet class and the days passed quickly.

Once again, Julia did well in swimming lessons at the Shorewood Pool. She learned the butterfly kick and watching her cut through the water reminds me of how much I want to develop a sport for her. We’ve tried horseback riding — too many cancelations due to weather to hold her interest and to keep her progressing — and softball with the challenger league — a bit too much support for her but she is not ready for regular softball. She is a natural at swimming but to really progress, to learn all her strokes, she needs lessons year round. She also needs the lessons to be private. A half hour of working one on one with a teacher is equal to a week of group lessons. I am not sure we can even fit that into our school year calendar and not sure if I can afford it.

It is a question of balance. Where to spend the little bit of time we have? Is it in a real therapeutic setting like IDS where social skills are worked on one step at a time. Or is it in training skills so that a day will come when those skills can be implemented in real life social settings. This fall we will have 2-3 sessions at IDS, attachment therapy and speech therapy. To that I’ve added cello lessons. Now I am thinking of swimming. This does not account for any after school activity that she might like to do — I’ve heard that clubs are a big thing in middle school and she announced today that she would like to be in plays at school. She really enjoyed her experience in the summer music camp.

And there is never a way to ease into anything. I’ve already made speech appointments for most September and IDS has pinned us down to fall semester days. Up to last year, school did not come with much homework and her IDS therapists could always be relied on to do some of it during their sessions. As we’ve changed therapists at IDS due to graduation and attrition, I cannot rely on the newer therapist to do any of the “school” work that Julia comes with. If that continues, we need to set aside more time at home.

The stress of trying to second guess what will work best is an incredible waste of energy. Yet it is not possible to just let things happen. And for heaven’s sake, the kid needs some down time at home to just fool around.

Umm, fooling around. Julia has discovered the Rainbow Loom (http://www.rainbowloom.com) and is now sporting about 10 elastic bracelets on her arms. I have one that she made for me. She is making gifts for her China sisters and wants to learn to make more complicated bracelets. It makes me smile because when her peers were doing things like this, perhaps this very thing, a few years ago, I did not imagine that Julia would ever do it. I thought it was another experience that she would miss. And I think she is still in the general age range for this craft.

On another note, it was interesting to find out how awful I was at following the directions for this craft. I read the printed instructions and watched youtube videos. And was pissed off the whole time. I think I felt exactly that way about learning to knit and crochet when I was a kid. Leading me to believe that I may be creative and artsy but not craftsy. Another kid looked at what Julia was doing wrong (probably do to my instructions) and fixed it. Since the fix, Julia has been successful making her bracelets.

I’ve had my first brush with Child Protection. It was reported during music camp that I hit Julia. A social worker interviewed Julia and came to the house. The experience was filled with stress but ultimately ok. So far, at least. It is also not surprising. For years, Julia has come home from school and told me that a teacher punched or kicked or pushed her. These are not lies exactly, mostly misperceptions. We talked frankly about the consequences of her tellings. She does not fully understand what is appropriate to talk about and when and to whom. Her filters are faulty or not in place. Being taken out of class and talked to by a social worker intent upon drawing information out of her scared/jarred Julia some. For me, it was humiliating — not grossly — I knew it would happen one day. Julia has a way of always addressing any excessive pride and taking me down a peg or two. The build up to the home visit was much more stressful than the visit itself.

There is a certain amount of feeling satisfied with this summer. Tasks, errands, lessons, cooking, gardening, swimming, finally reading (a very junky book). Not much towards any goals apart from borrowing and carrying over. Writing has been manic at times, journal-like self-indulgence (Yes, even more self-indulgent than what I put here.) and then fallow. I know that pace of days will change again when middle school begins for Julia. I aim not to push, to wait for what is coming and at the same time to prepare for it. I feel close to something although close might be in September or two years away.

And finally, we both got hair cuts. A trim for me and nothing special but Julia has bangs! She was not in favor at first but she looks adorable and she knows it. She can brush it in the morning and doesn’t need clips or bands to hold it back. She can even swim and come out of water with hair in her face. I’ve dithered about bangs for her for an entire year. Bangs are a commitment. Bangs take forever to grow out. Bangs might make her look too young. However, on balance, it was a great decision.

Posted on 30 July 201417 April 2016 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 4 July 201417 April 2016 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 3 July 201417 April 2016 by Suzanne Buchko 1

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 9 June 201417 April 2016 by Suzanne Buchko 0

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 1 June 201417 April 2016 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 18 May 201428 May 2016 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 15 May 201417 April 2016 by Suzanne Buchko 0

trillium

And the ~~trillium~~ Fritillaria affinis are blooming. (Thank you, http://myfoodandflowers.wordpress.com. Not trillium but Fritillaria affinis.) Spring has taken its time. Waking to bird song from the open window closest to my pillow before the sun. Planting plans floods my consciousness. My second thoughts are of neglected gardens and things planted in haste and without the followup care needed to establish them. The beds in the back garden are weedy and overrun with a few perennials that hog space and push out everything else. I’ve pulled and arranged, especially last fall and transplanted some things from the front garden that needed dividing. Without real plans. The winter has not been kind and for moments yesterday I felt the sting of failure. But gardens need tending and care and the emotions of the gardener are dug in like compost. Like soil enrichment, the consequences are visible a season in the future. Or two. And grieving has not been good for my garden. The gardens of my Indianapolis home were ambitious. Now I remember them as such beauties but I worked very hard with a heart that pulled the beauty from the soil. And those beds were not without withering and dying. In Madison, since David’s death, gardens are afterthougths and responsibilities, more burdens than works of love. I’ve worked on them and have not sat in their midst. I have the time, if I wanted to take it, but not the will. This is not a willing spirit and weak flesh. Both are weak and it does show. But daffodils bob and wave and the trillium are blooming. Spring renews and the work of the fall — bulb planting in the front garden and bed defining in the back garden — shapes my first thoughts this morning. Is this the year to truly begin again. Third thoughts this morning are of planning a corner of the back garden. This was an awful, ugly little part when we moved in but there is an old lilac, an overgrown forsythia and a few stones laid for a bench to sit on. Here is where I will make my stand this spring. A cleaning, a design, a planting, and faithful watering. Some grass seed for the lawn that butts up to the edge and mulch to keep the weeds at bay. Such a simple plan. Self consciously, I thrill to this sure sign of spring deep inside. My perennial resilience is sending up shoots.

Posted on 9 May 201419 April 2016 by Suzanne Buchko 1

mother’s day

This was started yesterday when I had limited sleep and a curmudgeon-y view. So, when I read Carrie Contey’s article about communicating mother’s day wants to family to have a satisfying mother’s day, http://t.e2ma.net/message/wv6x4/so6dmv, I grumbled. I’ve had no trouble finishing up today, with sleep and a much brighter view. Perhaps my inner curmudgeon just needs to escape and dance.

I’ve never been a big fan of the Hallmark holidays. Mother’s Day was always the perfect opportunity to prove that I really was the less than adequate daughter and granddaughter. No matter how hard I tried, and there was probably a good measure of passive aggressive behavior going on, cards were late, gifts never made it, and I always picked the wrong restaurants. Then, there were the years when I was a florist and mother’s day was simply hell. Although not everyone has a sweetheart to buy overpriced roses for on Valentines Day, everyone, everyone, everyone in the world has/had a mother, and the number of “children” in need of a gift on the celebratory day is overwhelming. The beginning of those days were fun and sweet and endearing but by twilight, when the last customer of the day banged on the locked door, demanding the dozen yellow roses that had been sold out the day before, the glow of filial love was hard to be warmed by.

From the time I was pregnant with Cheshire until four years ago, David managed mother’s day activities. In Indianapolis, where we lived for a long time and where mother’s day heralded garden planting season, my perfect celebration was to shop for annuals and tomato plants the day before or the morning of the day and then to spend as much time as I could outside putting a few hundred annuals into the ground. David would cook and I think I might have had the choice of movie in the evening. David and Cheshire would give me a card or cards and probably a small gift although I have to admit that although the vision of planting is vivid in my memory, the gifts I received are not. Sorry, Cheshire, if you labored long and hard over something. Some years we went out for brunch sharing the morning with Marcia and Matthew, but mostly I loved the warm May planting day.

No! I take that back. I do remember two hand made gifts from Cheshire, one a lovely purple pillow with lace trim that she sewed; however, remembering reminds me why —

Now, I simply hate mother’s day.

I’ve held back from this admission for a few years feeling that it is rather ungrateful to complain about not being celebrated. After all, there were so many lovely, perfect celebrations and no one has an unqualified right to be celebrated. However, the day just makes me unhappy and jealous and full of worry, and these are my reasons:

~ I don’t know what other single mothers do but these last four years have demonstrated that mother’s day is really wife/partner day. It is the partner who is orchestrating — getting cards and gifts, making sure little fingers sign the cards, keeping secrets, cooking or making reservations, planning for festivities which may include naps or baths. When there is no partner, who does this?

~ As a single mom of a kid who doesn’t yet get any part of the gift giving/card making/even wishing part of mother’s day, I am more than ambivalent about reminding Julia to make me something or to wish me a happy day. Oy! That necessity to remind and prompt brings on waves of self-pity and can induce worry — will she ever be aware enough to wish me happy mother’s day?

~ Cheshire is too far away. During this time of the year, it has usually been a few months since I’ve seen her and so not having her here for mother’s day (and no, I don’t want a visit on Hallmark holidays) accentuates those missing and longing feelings. It also brings on an embarrassing bout of jealousy. Her very nice boyfriend has a very lovely family which include a mother, grandmother, aunts, etc., and it is with them that I imagine she will spend at least part of her day. Really, I am not proud of these feelings, I don’t expect her to lock herself in her house and not celebrate his mother because her own is not near, neither do I expect her to keep any celebration to herself and not tell me. It is all irrational!

~ There is no one to buy a card for. Yes, I used to complain about buying cards, but everyone to whom I owed a card to is dead. I’ve mused about celebrating my sister and friends who are wonderful mothers but I am much too mired in self-pity to take that on. I also imagine, without any real knowledge, that those friends are all surrounded by orchestrating families. Again, the self-pity is just embarrassing.

~ Finally, mother’s day reminds me that I never had a warm, loving mothering relationship. I could never bring myself to buy overly affectionate cards — perhaps not at all overly affectionate for those who have good relationships — and then felt guilty that I could not bring myself to buy the cards that my mother wanted. We were the cliche she and I — I never had to go out of my way to displease her. My choices were never hers, and deep down, I don’t think she liked me very much. Perhaps it was not personal. Which is sad but not terrible, but I still regret, just a bit, a very little bit, that I never figured out how to have a relationship with her.

So, that’s it. I’m done. With the inner curmudgeon tap dancing on a virtual table, I don’t feel half bad. And I wonder what to plan to do on Sunday.

Posted on 9 May 201419 April 2016 by Suzanne Buchko 2

Chasing Joy

Not joy that is ever accessible during a happy life but joy that comes from digging deep and basking in gratitude for the day.