Author: Suzanne Buchko

one

Sitting in Panera drinking tea from home and eating a terrible, awful, delicious, sugared breakfast muffin.  Sitting across from two gentlemen who I rather embarrassingly notice are appropriately aged if I was interested in social interaction.  I am taping away, replying to almost ancient emails that should have been answered last week, two weeks ago or how many months ago?  I usually really enjoy sitting in a public space reading or writing.  I love the gentle mummer of strangers, slight rises in voices advancing and retreating into the din, isolated words that peep out, and the occasional peek at who is sitting nearby or ordering at some counter.  But the conversation of the two gentlemen is impossible to miss or resist.  They begin by talking bullets and guns.  I wince.  They move on to the awful state of health care.  I roll my eyes and redouble my efforts to ignore them.  But they proceed to complain about “lazy, disrespectful, no-good” teenagers, public education that they “have no business paying for” and finally, and not to be left out, “our useless” president.  Now, I need to nail my feet to the floor and tape my mouth closed.  I am saved by a noisy influx of breakfasters who drown out the most offensive statements and I am able to control my most aggressive impulses.

However, what lingers is the stone in the shoe, the irritation of loneliness.  I would like to enjoy male companionship and I wonder if pickings are slim enough to include the despicable creatures sitting across from me.  Sometimes I wish very hard to enter into the fray.  I didn’t like dating at 17 and 20.  From my perch apart from it all, it doesn’t look so good now.  In fact, desserts and barren moon landscapes come to mind.  But as a wise nun told me when I was fifteen and broken hearted and complaining much the same as I want to right now, I only needed to meet one boy.  And one is a very small number.  When I remember that, I can pack up, pick up and go on with my day sure that one is a very small number and that the odds are in my favor that I can certainly meet just one.

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sad days & purpose

I wanted to journal as soon as I dropped off Julia at school today.  Instead, I came home and browsed around the internet letting the postings about 9/11 bounce off or sink beneath my skin.  Our Black Tuesday, Pearl Harbor and Kennedy Assassination — our days that changed everything.  Why do we need those days to change everything?   Why . . . Perhaps I should ask why don’t I change before it is forced upon me.  When I get the ‘why’ for me, perhaps I’ll comment on the bigger us.

Fall creeped in today as well.  Not creeped, although under cover of darkness.  Danced in with trumpets and streamers is more like it.  Last shorts worn yesterday, both of us in socks this morning, sweatshirts that will probably stay on all day, wondering whether I will get plants put in the garden before tomorrow’s predicted rain and the slight possibility of frost.

A gray day.  Working hard not to let the sad significance of the say stick but damn it is hard when the sky is so dreary and lights need to be turned on at nine in the morning.

A day of tasks preparing for dinner guests by clearing and a vacuum.  Wash needs to be folded and then outside to over seed, hoping it is not too late for that, planting new perennials and the Japanese iris I dug up yesterday.  Dividing perennials is always a thrill after the work of digging and dividing is finished.  What I dug up yesterday was a newly planted patch five years ago that should have been divided last fall.

Something else.

Each year First Unitarian Society (FUS), our church, has an art show/fair.  Art in the Wright Place — Wright because it is held in the space designed by Frank Lloyd.  I filled out an application for Julia this year.  The summer’s art work lends itself to sale and Julia could work on both money and social skills at the sale.  The response to Julia’s tee shirts has been great and more people are asking if they could order one and so, I thought that we could also make some shirts for the fair.  However, Julia did not make the cut.  The reasoning was that the art fair wants to attract quality artists and customers beyond our congregation.  If they open the door to Julia, other kids may want to participate forcing the PTB to pass judgment on kid art.  If any kid who applied is accepted, that would change the tenor of the show, professionals will be less likely to want to participate and the fundraising focus will diminish.

The particular power that sent the message also asked if she could order a dancin’ dino shirt because she had only become aware of them when some of the folks around her received them.  When I explained that the shirts were part of a limited time fundraiser and that I had hoped to offer some shirts at the art show, she suggested that I check out ways to keep the tees coming.  I momentarily thought about it but “the reason for the rule” tapped me on the shoulder.

“Reason for the rule” is short hand for something a law school prof proposed — if the reason for the rule does not apply to a situation, then the rule should not be imposed.

The reason for making more shirts was for Julia to get social skill and money practice with people at the show.  Doing any more by mail order doesn’t give her the practice that was intended, and to be honest, although she is thrilled that people are wearing her shirts, she is not impressed that her art is on a shirt.  She doesn’t need the ego boost.  To keep the shirts coming through some private printing might be only fanning my own vanity.  The shirts are fun but I’m not interested in setting Julia up in business just yet. Most of the work would fall on me and I’m not interested in setting up a Julia-related art business just yet.  I hate saying ‘no’ to folks who are asking for more shirts, but . . . there is such a pull to get sidetracked by endeavors that slide so far from original purposes.

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dancin’ dino

IMG_2749Our dancin’ dinosaur tee shirts arrived by mail yesterday. Julia was tickled and couldn’t wait to wear one of hers today to school. Lots of friends have ordered shirts and are posting pictures on Facebook. Every picture puts tears in my eyes. Three teachers from Randall posted a picture, all three of them with dino shirts and “I love Julia” scrawled on the board behind them. There are no thank you’s enough. And I pray that this is a beginning, not the highlight. I hope that this incredible talent is yet to be developed and will carry her far.

Who knows what can come, there is no way to capture a moment and keep it close. I ride this small happiness, Julia’s small accomplishment and hold on to hoping that her life will unfold gracefully and with much happiness and independence. I know, I know, it is the same with all kids but it is different when it is not assured that your kid will grow and mature and come into their own. It is different. And hard. And joyful.

This being a mother of a kid on the autism spectrum is not for weaklings and scaredy cats.

Some notes on the first day beginning of middle school that I began last week:

Day one is over and day two begun. Actually today, day seven is almost over.

Julia liked her first day. In her assignment notebook she wrote on the first page that she loved Wright Middle School. This morning she remembered the names of her homeroom teachers (one is her special ed teacher) and her SEA (aide). She ate chicken nuggets and french fries for lunch and also loved them. There was perhaps also an apple that she ate. There is no sign that she is interested in bringing healthy lunches and at least at this point it is not worth any fight on this one.

She continues to like her school and the experience. The first set of challenges are about listening to bells and whistles that start or end classes and activities, and also at moving independently from room to room. At Wright, the sixth graders only move among a very few rooms but it is still very confusing for Julia. I think that part of the confusion is about the new sounds — noise — and stimuli that distract her terribly. If she continues to be confused and unable to move from room to room, I’ll ask for some help there. Although I want her to be independent, I want to her to learn content as well as independence. And I think content should come first.

Julia willingly is willing to get up and dressed in the morning. We have not laid out clothes each night like we did it all last year. This year she wants to pick out her own clothes and pending my approval, she does a pretty good job. Have school begin an hour later than at her elementary school is really golden! I am so much happier to get up at 6:45, than 5:45. At 5:45 I can hardly drag myself out of bed, and I am not effective at dragging someone else.

This morning I dropped her off — a bit later than planned but that was more due to my own confusion about when bells ring than to our morning routine — by the gate of one of the playgrounds. It is probably not called a playground in middle school. Other students were already walking into the building. She very cheerfully hopped out of the car and joined in the throng walking in. She immediately struck up a conversation — perhaps started talking is a better way of saying it — with two girls who were probably not sixth graders. I watched them look at her and then say something that I couldn’t hear. Oh god, I hope there are kind kids in this school! Julia has developed into a very friendly/talkative kid but so much of what she says is border line inappropriate or unintelligible. She needs more listeners who make sense of what she says.

Last week, Julia took the tapes off her cello. Yikes! She was jubilant; I was/am terrified. Her teacher do not really believe in taping cellos. The tapes I’m talking about are very narrow bands of sticky tape on the finger board of the instrument that mark where the first three or four notes are. It is a guide for beginning students and it seems to be quite a security blanket for me. Instead of using the tapes to figure out where the fingers go, Julia (and I) will need to use our ears. At lesson, she took the tapes off and played two tunes better than she ever has played them. Ok, I get it. But I hope it works at home. I am skeptical. I can’t help it. I am not a musician. Her teacher says she has a good ear. I don’t think I do.

While her cello teacher was giving me the rational for removing the tapes, Julia was figuring out the next tune in the Suzuki book, “Go Tell Aunt Roady.” So her teacher assigned the song as long as she memorized the one she has been working on by next week. Julia said, “sure.”

We also may be renting a cello from her teacher instead of from the school. That means that her practice instrument will be a lot better than what she has now. I think she would appreciate that.

I am starting something new on the iPad. Julia wants to play games on it and she also wants to get back to playing with her wii. It dawned on me that game time needs to be reward time. And also limited. I decided to link game to to writing prompts in her iPad journal. I’ve been giving her three: three things she did in school, what she ate for lunch and how she felt after a day at school. I began by sitting with her as she wrote and then correcting grammar and spelling (mostly capitals) when she was finished. This week, it was best when she did it in the car on our way to her therapies. Best because it is close to the end of the school day and she can remember better what she did than if we wait until she gets home close to dinner time. I’m also not looking for a lot of writing. She really can’t do that well and stay on topic. And some of what she is writing is funny. I am sure that her social studies teacher did not mean to emphasize the importance of using shampoo to clean hair. I’m not doubting that he said that, just the importance he put on it. I put her picture from the first day of school on the first page. I want pictures to be a part of the journal, (We used pictures alone last year. ) but I don’t want to burden her teachers with another task until everyone is more settled. For writing, she gets 20 minutes of game time to be used as she likes. Right now, she plays the HP lego game on her iPad.

My notes:

Fall is always the beginning of a new year for me. Another go at improvement and reinvention. Or at least a refinement of ideas, processes and goals. This year is no different.

Towards the end of the summer, my meditation practice really fell off. Too much Julia time or rather my perception that I had to spend time on addition instead of meditation. Probably a mistake. Immediately correcting that one.

The garden needs attending and I want to seed the lawn. The next few weeks are crucial. The compost needs emptying. I found some great perennial bargains at Builders Square. Also, I have perennials and corms to dig up and divide, as well as an over abundance of hollyhock plants to move from the front to the back.

Interesting thing about my hollyhocks. I love them! And I’ve managed to get quite a good backdrop of them in the front terraced garden bed. But this year for the first time since I planted seeds, I’ve only gotten plants and not flowers. Since hollyhocks are biennials that bloom only in the second year, I usually have some flowers and some plants every year. I am not sure what happened to my flowing two year olds this year. Was it the awful winter? I need to thin the plants and dig up some that are in inappropriate places. Hopefully, next year, I will have flowers in the front AND back gardens.

Contacts have been made and interest pursued. It looks like I may be leading a mindfulness group for caregivers – parents, grandparents, sitters — at IDS. It would be my toe in the waters I want to wade waist deep in. I’ve sent a mock up of a flyer to my contact at IDS and I await the PTB’s approval. Even if I get it, I know that there is a decent chance that no one will sign up for the circle. It happened last year with the Special Ed PEG group. I hope this is different. It would be a lovely way to begin.

Julia and I are moving on with our knitting. She is making a red and yellow scarf. Yes, Gryfindor colors. I am ready to make a hat. It is rather amazing to me that one of my newish friends is a master knitter who is very willing to teach, advise and answer questions. Perhaps others will not see this as amazing but the saying “the teacher appears when the student is ready” keeps running through my mind. I’ve believed in this idea before I ever recognized that it was happening to me. These days, it seems to be happening all the time. Often at least. And I am deeply grateful. I am also struck that I have done so little to merit or deserve or warrant such attention. When another friend called me to urge me to come to a newly formed book club, I felt the same way. How did she know that I really wanted to join a book club even though I had done nothing about looking for one? I have the feelings of being cradled in community.

This feels like a long, overdue letter to a friend who needs to be caught up on every part of life. It needs to be put in its envelope and sent on its way. I’ve promised myself to write every day — just 200 words but write. I am hoping for rebirth.

Posted on by Suzanne Buchko 0

family day

This year we celebrated Family Day, the day that Julia, Cheshire, David and I met in China. When David was alive we celebrated with presents and Chinese food but for the most part Julia had no idea what we were doing. Celebrations meant very little to her for a long time. She liked Christmas and her birthday but it was more for the presents and the birthday cake, which Cheshire made for the first two years she was home, than anything else. She had no conception of time passing, of the yearly repetition of significant days, of celebration.

If she had been a newborn when we met, none of that would have been surprising. Tiny children learn time by practice, not by rational discussion and explanation. Although I had expected to do a lot of practice when we adopted a five and a half year old, I also expected to be able to talk and explain what we did to Julia when she learned enough English. And it was hard that neither the discussion nor the yearly practice of celebrations taught her about time and the passing of days. Parents of neuro-typical children, even adopted kids, will say that their kids took a long time to figure out time and perhaps they did but Julia did not, and to some extent still does not, understand the passing of days. Of the many things about Julia that scared me, her inability to understand time has been one of the most frightening. In my mind, Julia is time challenged because of early trauma and lack of attachment. I can’t prove this idea but to me, the synapses that fire in order to count, tell time and consider distance were turned off when neglect and abuse filled her days.

Time has long been the subject of Julia’s therapy. During her intensive days, she made calendars with her therapists. She marked off days, put stickers on significant days, counted up and down to special events. Learning the days of the week was a goal for more than a year and when intensive therapy was over Julia had not quite mastered the skill. Months of the year are only a very recent acquisition and not at all rock solid yet. Now I look forward to Julia’s understanding of these big concepts. Slowly. Very slowly but they are coming. She can now answer the questions of when her birthday occurs and how old she is. She knows what season Christmas, Hanukkah, Halloween occur in, although she is shaky on Passover, the Fourth of July and Chinese New Years. She is beginning to understand that all of these days are not the same — presents on some, special food on others and being with extended family on still others. Sometimes she can even answer what today is, what yesterday was, and what tomorrow will be.

Part of Julia’s speech therapy has revolved around the wh- questions of which ‘when’ has been difficult. This summer she has written out the ‘when’ of the day–year, season, month, date, day, time of day and time. She does not use this information when she speaks or writes and I wonder if she ever will. Asking what we did yesterday or on a specific day is still almost impossible for her to answer although notable events like what we did for family day are accessible format least a day or so. She does need help to communicate the information–prompting questions or background so that what she is saying makes sense to her listener. Speaking in context remains a challenge.

Family Day has been different and harder for both of us then other celebration days. It was the day we met. In China. Nanchung. In 2006. It was not an easy day. Julia was ripped away from what she knew. She was not allowed to say good bye to the only person she loved before she left the orphanage. Her Chinese was not understandable by our facilitators and they had no idea whether they were getting through to her when they tried to explain what was happening. Mostly she was scared. Once again, handed to strangers. Two years ago, she told me that she didn’t want to celebrate family day because it made her very sad. She missed China. It was one of the first times that she demonstrated an understanding of a notable day. So for the last two years we marked the day very quietly. When she asked not to celebrate, I took it to stem from her own feelings; however, I wonder if Julia’s request had something to do with my ambivalence.

Since David died I have struggled to celebrate anything. The struggle has waned with time and the understanding that rituals and celebrations need to be remade, but my sometimes ambivalence and need to break away from rituals which have become meaningless or just too sad to me has not provided the celebration structure which Julia needs to learn. Some of my changes have surprised me. I’ve long held that the only Christmas tree was a real tree but we’ve traveled during three of the last four Christmases. I found it hard not to have a tree at all but I didn’t want a big nor did I want to leave a tree in the house with the cat and dog when we travelled. And I couldn’t bear to take out the decorations that I spent so many years collecting. For a few years, I bought very small trees that could easily be put on the back porch when it was time to travel and Julia made decorations. One year it was dinosaur versions of all of her therapists and teachers. Another year we made baking soda dinosaur cut outs, and hung them with red ribbons. Last year, I bought a small fake tree and small ornaments to hang. Had I been told five years ago that I would put up a fake tree with impersonal ornaments, I would not have believed them. And so my own crazy process of grieving and finding my sea legs again has not provided Julia which rich family traditions.

This is not necessarily bad but it is not the way I expected Julia to be raised. I struggle with feelings that she needs more than most kids to learn family and I am giving her less. And then life intervenes making even simple plans complicated.

A few weeks ago, Julia announced that she wanted to celebrate family day this year and it happened that we had a Chicago eye doctor appointment that day. The appointment, made in May, was the subject of much negotiation between two docs and me and I really didn’t expect Julia to want celebrate Family Day. So whatever we could plan to celebrate had to be fit around long car drives and a few hours of eye testing.

We drove into Chicago on Wednesday evening after Julia finished therapy at IDS. We stayed with our friend, Linde, at a loft that belonged to another friend’s parents. Linde had pizza for us (and a beer for me) when we arrived. (The loft was like something I dreamed of in my NYC days.) The next morning we had breakfast together and then went on to the Field Museum where we spent a hours with the evolution exhibits walking with dinosaurs and other prehistoric animals. The eye appointment went long which was not wholly unexpected and we wound up eating McDonald’s in the car on the long ride home instead of take out Chinese at home. At home, Julia opened presents. I had made a Hogwart’s uniform for an American girl doll. Our friend, Sandra, made Julia a beautiful quilt in reds and golds and that goes with her Hogwarts dorm room and includes two blocks on which Julia’s dinosaurs are copied. Julia loved her gifts. I had expected her to love the quilt. It goes so well with her room and the dines are very cute, but the doll was a chance. I had no idea how she would react.

Ivy is one of the historic American Girl Dolls from a story about the 1970’s and it was the first of those books that Julia connected with. She liked that the character had a Chinese family who celebrated New Years. The American Girl company is headquartered near Madison and at least once a year there have a big sale. I’ve never gone because Julia has not been interested in dolls. A few years ago a friend who went found a huge pile of imperfect Ivy dolls. She messaged many friends and then bought dolls for those who wanted them. The doll’s green pants had bled a little bit, staining the dolls’ legs. On the one I got the stain is barely visible. I put the bargain doll in the back of my closet figuring that one day Julia might want it even though Julia does not have a good doll history.

One of the toys that we brought to China to give to her when we met was a baby doll with moving eyes. I am not sure whether it was the first day that we met her or the day after, but when we gave it to her she first cradled the baby doll and then when she saw the eyes open and close, she freaked out. Julia threw the doll down and started beating it with her new stuffed bear. I tried at other times to introduce a doll to her but Julia was not interested. She liked the Disney heroine barbie-type doll. She has two that she played with for a little while and will pick up now and again, but generally, she was much more interested in her dinosaurs than with human shaped dolls. Perhaps it is because she is identifying more with people these days. Perhaps it is because she read this doll’s story and the doll is Chinese. I hedged my bets by making the Hogwarts uniform, the pattern of which I stumbled upon when I was researching and searching for ideas for her bedroom.

And so, Julia opened presents. Ooh’ed and ah’ed and then I sent her off to bed. She put the quilt on top of the comforter that usually covers her bed. At least for the moment, it staying there. Ivy is living on Julia’s comfortable chair. She has asked to bring the doll to church and to school. Did she know that I would not agree? She also talked about Family Day to Marilyn, our attachment therapist, and to Linda, her speech therapist. And seems to be remembering why she got gifts.

And I, holding my breath, crossing fingers, saying a prayer, am hoping that a little more understanding has come with this special day.

Posted on by Suzanne Buchko 1

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 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 by Suzanne Buchko 1

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