30 April 2012

What I saw at the bus stop

We usually run through our morning routine and get out of the house and across the street just in time for the school bus to turn the corner and roll down our street.  I’ve convinced myself that I time our exit from the house so that we can get through our whole routine in, including 15 minutes of meditation -- never an easy fit because neither Julia nor I like getting up early.  Today, I saw why my timing is so good and exactly what I was trying to avoid and it hurts my heart.
Julia is eleven.  She has an alphabet of diagnoses, one of which, PDD-NOS, is pervasive developmental disorder which puts her on the autism spectrum.  She operates on the level of a six or seven year old -- a seven year old with absolutely no social graces.
We were outside early this morning.  I am not sure how we did that because we got out of beds late by ten minutes, but I didn’t wash my hair and Julia was extraordinarily cooperative this morning.  We made it outside and across the street with three minutes to spare.  And in three minutes, I saw how the world treats with people with disabilities.  I saw it in microcosm.  I am neither naive or uneducated but I have not seen it as clearly, as quickly, as completely as I did at the school bus stop.
The school bus picks up third, fourth, and fifth graders from our neighborhood and deposits them into the adjacent neighborhood into an old brick, turn of the last century school building that is arguably one of the best in the city.  These kids go to “kindness camp” during the school year, the rules of the school emphasize that a community is strong when it is diverse and caring, and parents spontaneously send gifts of food and offers of support when a family is in crisis.  A lot of kids wait at our stop and a lot of parents see them off every day.  The scene is one of perfect middle class childhood.  Loving, caring, protective, interested parents seeing off their beloved, well-scrubbed offspring.  One father, whose son emerges from the family van, never gets out himself, but he is the exception and over the year, he has begun waving at the rest of us after the school bus has gone and he leaves to begin his day.
The boys toss around some ball, a football today, snow balls in the winter.  They probably make too much noise but none of the parents have the heart to quiet the early morning exuberance even though the residents of the home we wait in front of contains no children.  Time and again, the parents have wondered if the boys are disturbing someone but they forgive the boys who are expected to contain their energy and do the hard work of learning for the next six hours.  
The girls cluster in twos or threes, or sometimes, like today, in a circle of more than six.  I have no idea of what they are talking about but it is the charming chatter of almost-adolescent girls -- sweet, adorable, catty, and teasing.
Julia wants to be at the bus stop early.  She wants to watch the ball toss and advise from the sidelines or enter into the girls’ conversation.  She is exuberant, hopeful, and utterly inappropriate in her approach.  Today was no exception.  
The cluster of girls was tight but Julia burst in with a “hi, girls” and focusing on one girl in particular asked, “What your name is?”  The girl glanced at Julia and then ignored the question with a sigh.  Julia’s manner was far from cool and the girl was practicing cool.  I could see this, Julia could not.  I held my breath hoping that another one of the girls would jump in with an answer.  Some kindness.
Julia tried again to begin a conversation, again awkward but earnest.  This time the same girl answered Julia’s question in an exaggerated way, rolling her eyes and sending meaningful smirks and giggles to other girls in the circle.  As if on cue, the circle disbanded, breaking into a private conversations a step away from Julia and her conversational victim.  Now, the girl was trapped.  For all of 20 seconds.  She did not try to engaged Julia in conversation, which admittedly takes some compassion and care.  Instead, she feigned interest in something a few steps away and suggested that Julia look at that something.  Julia, ever hopeful that she had hit conversational pay dirt, went to look at the something, chattering away as if the girl was following her and listening.  The girl gestured to her friends, wiping the back of her hand across her brow in mock relief.  The girls laughed and reassembled in a group as quickly as they had disbanded.  This time it was not a circle but a line.  A line in which every girl had her back to Julia.  Every girl had her back to Julia.  
A blink of the eye later, the school bus turned the corner and headed down our street.  The line of girls formed the bus line, the kids got on the bus, Julia waved and sent me a thousand air kisses, and the  morning ritual at the bus stop was finished.  
And I sit here unable to stop my tears.  What do I do?  I want to talk to that girl’s mother.  I want to talk to all the girls’ mothers.  I want to talk to all the parents who wait at my bus stop.  I want to talk to every parent in the school.  I want to put this writing the the school newsletter.  I want to convene a mandatory meeting of all the parents.  I want to change the kids waiting at our bus stop.  I want to change the kids in Julia’s school.  I want to change the world.  I want to rage.  I want to ask for compassion.  I want to ask for help.  I want to ask for understanding.  I want to ask for kindness.  Instead, I sit here unable to stop my tears.  I have no idea of what action to take, what words to say to whom, that would not further alienate Julia from her peers.  
For her part, Julia has no idea of what went on.  She is not tuned into the world of smirks, rolling eyes, and subtle diversion.  Had the girl told her outright to get out of the circle, Julia would have understood, but that was not what happened.  And Julia did not notice the line of girls with their backs to her.  When the line up for the bus began to move into the bus, she blithely tried to start up another conversation.  
Today, I hurt for what I saw, but there will come a day, maybe tomorrow, maybe next year, when Julia will understand the smirks and rolling eyes.  That day, she will hurt.  That might be the day that her challenges turn into disabilities.  

29 April 2012

And just a few photos from the month.  Julia sitting on the front deck ready for adventure.  It is still the eyes on the camera that thrill me.
 Latkah the dog, catching her late morning nap in the sunlight.  What luck to find an errant couch pillow on the living room floor!
 And Julia doing what she probably loves most in the world right now, coloring in her bird coloring book.

Recently, both Julia's teacher and our lead therapist asked me if I had video recordings of Julia to see how she is growing and progressing.  I admitted that I had not taken video of her since David died.  He did most of the video recording/movie making, and, well, I just didn't feel like doing it.  But 21 months is a long time in the life of a child and I don't really see progress day-to-day.  

Singing has become part of our morning routine before the bus comes.  After we do our strong sitting, Julia wants a song.  The Baby Tree, with words and music by Rosalie Sorrells is the song I sung for Cheshire when she was little.  I heard it years before I had children sung by the Jefferson Starship on the album Blows Against the Empire.  I'd been singing it to Julia for about a month when one day she started singing it with me.  Its not her first song -- I could be almost embarrassed that, other than Chinese songs and a some fractured Christmas carols, Julia's favorite singing is from the Chipmunks movie.  Those songs tend to be pretty inappropriate.  I've played kid songs and musicals for her since she's been home but she has not picked up much of anything.  She does like the songs from the musical Shrek and sings it loudly when we play them, but there are very few of the words that she really knows.  The Baby Tree is different -- as it was for Cheshire.  She is also much more comfortable being recorded with me than by herself.  That did not work at all.  

28 April 2012

Quiet busy week culminating in last night’s movie night at Randall School.  Julia’s school.  Last responsibility of the PTO social calendar.  I showed Howl’s Moving Castle, a Miyazaki film, my favorite.  50 kids and their grownups attended.  We served popcorn and lemonade, and we had a very last minute addition of a student council bake sale.  It was the first time that we did it at Randall and the first time we showed a less than totally commercial film.  Watching all those kids and all those grownups sitting in silent attention, laughing at the subtle jokes, and enjoying the happy ending warmed my heart.  Bringing a new film maker to people’s attention is the reason I started this event -- well, one reason.  I also wanted to start a tradition of community events which were smaller than our big dance and carnival.  Today, I am pretty self satisfied.
And happy to check the responsibility off my list.
Rainy day.  Gray.  Quiet.  I slept with the window open even though it is a bit cold to do so.  Warm quilt and this morning sitting with David’s lap shawl over my shoulders as I tap away.  Perfect weather for today.  Schedule: Julia’s therapy and I will sort a few more year’s memories, afternoon movie, probably The Pirates, FUS where I am reading the welcome today, and home to supper and some playing of Super Mario Wii game.
Two very large burdens fell off my shoulders on Monday and only now do I feel comfortable crowing about them.  The Bloomfield house, the remaining asset in my mother’s estate, closed on Monday.  The estate remains open and work, mostly my lawyer’s work, needs to be done, but all of the estate, every penny is sitting in the bank.  And in the bank I don’t need to worry about the oil spill or insurance or taxes or the water bill.  It happened on Monday late afternoon and as close as Monday morning, we -- lawyer, realtor, and myself -- were not sure it would happen.  Every mishap and side-step that could happen did and I’ve weathered every bump in the road.  And now, even though the estate is not yet closed, the light at the end of the tunnel is visible.  I woke up on Tuesday feeling the lightness of a floating thing -- a speck of dust, a feather, something so light that it is lifted by the wind and carried with ease.  
Strangely enough, on the same day, I went through the last box of basement stuff, the last of the photos and pictures.  It was only when I was finished with the box that I felt the wild synchronicity of the day.  Two projects, both of which will need further work, but the tunnels of completion formed.  Solid now.  Perfectly reachable goals.  So many metaphors here.
Wondering whether lying fallow includes a break from writing every day.  Possible.  I have been using my time to chip away at the mental list of next things and have been falling exhausted into my bed at night.  I long to be out in the garden but it has been too cool to be comfortable and work outside right now would delay completion of my stated tasks.  And completion is what I am all about this week.  So, I welcome the rain, clear directions on how to spend my day.
I hear Julia turning pages.  I have to get her up and ready for therapy this morning but how I love to hear her immediate reach for a book when she wakes up on her own.  They are doing a standardized test next week in class.  Julia gets many accommodations for testing, when she is included in testing which is optional for special ed students in our district.  One accommodation is extra time and so she started the test this last week.  Her teacher reported that she is taking the test much more seriously than ever before.  She is paying attention to it and working at finding answers.  This doesn’t mean that the answers are correct but it is more progress, a subtle development that does not necessarily show in scores.  It is a building block and we, Julia’s team, is quick to notice when those blocks begin to fall into place.  
Finally, this week I found out that I am losing my lead therapist and one of my line therapists.  The line has been with us since Julia began therapy.  The lead came one last year.  I love both of these young women and I will miss our weekly encounters so much, but both of them feel it is time to move on.  And I have to agree.  There are horizons to aim for and some other take on the work that they need to find.  Oh, leaving is so hard.  Missing is hard.  Moving on to the new is not easy.  Over and over, this is what fills my days.  
I face the wind.  Wonder about tomorrow.  Embrace the changes.
Or give it a good try.

23 April 2012

And more of the same.  Quiet weekend.  Chores, a little therapy, a performance by the Forward Theater.  Three short plays by Brecht, Dorothy Parker, and Shaw with a comfortable frame to flow from one to the other without abruptness.  I enjoy the theater’s work so much and yet when i go to the performances, it twists my heart once again.  Since I stopped doing theater, shows always carry a bit of pain like seeing a past lover who has moved on and left me still wanting.  I did not, however, stop seeing theater, just had to get used to the ache.  Then, it is Forward Theater, the group that David thought could be a home for some of his work.  He liked the people so much, people who I did not get to know until after he died.  And they are very caring.  They are kind to me, and I have the feeling each time I see company members that they feel a loss.  It is not that no one else feels the loss, but they were his friends, his last new friends.  I am not articulating this well.
Julia and I played a simple game -- Green Eggs and Ham -- and she tried to cheat!  I remember when Cheshire went through that phase at around 6 or 7, when the desire to win was stronger than the will to be fair.  It dismayed me when Cheshire did it, it delights me now.  Julia, who saw absolutely no reason to play games, now wants to win!  And she tried to cheat while looking sideways at me, seeing if i notice, if i can catch her.  Julia is so obvious that there is not way I will not catch her, and I value fairness over winning, thus I certainly will catch her.  
She also walked the dog alone for the first time.  She only went up and down our street where as together we usually walk around a block or two.  She’s been putting on the dog’s leash for awhile now, as well as holding the leash as we walk.  I’ve allowed her sometimes to walk out to the front of the house with the dog while I get ready for a walk.  And so, gradually we’ve worked up to her doing the walk.  I am not ready for her to walk around the block yet.  As it is she tends to get distracted and forget the purpose of her mission whatever it is and yesterday she was having a drug vacation day and I expected her to be more distracted than usual.  But she did a good job being patient and slow.  She also picked dandelions while the dog sniffed and peed which gave focus to her task.
I continue to sort pictures and papers but this is the last major sort.  I put it that way because there are bound to be odds and ends that appear.  The pile on the table is not disappearing as quickly as i’d really like but before week’s end I hope that the dated small piles on the dining room floor are put away in file boxes.  Then a round of culling will have to go on and a page of writing for each year but I can see the end of at least this phase right now.  Every so often I ponder stopping and giving up this huge clean up.  I have paused a number of times when I could not read or look at another thing, but then I’ve taken up the chore again and moved on.  Hard but healing.  
I felt at one time that I might be trying consciously or otherwise to push all of my past away but it is not that way.  I am summing up what I’ve lived.  I am valuing my life up to this point but also taking stock so that I can move on.  To what, I am still not sure, but still to move on.

20 April 2012

Oh, I have been quiet. Inside and out. Still there. My work at home remains sorting pictures. It is sad work because I see in the pictures aspects of people that I never knew about, never asked about, never considered. And so many of them are gone from this plane. The one exception is a favorite aunt and uncle, David’s family, and although I’ve not spent great swaths of time with them, our visits have alway been meaty and deep. I look at their young pictures and I see the older and old people that they became. But, the young pictures of my mother and father are not like that at all. I wonder what happened to the joyful faces that must have looked at me with so much love when I toddled around the house. My own face, which in expression if not in likeness, remind me so much of Cheshire’s wild joy as a little kid, glows back at mommy and daddy. When exactly did that change? And why? I remember being a rather moody 8 year old, a kid who was pretty selfish and didn’t like celebrating anyone else’s birthday.

The stack that saddens me the most is that of David’s mother. I can write pages about my own parents and grandparents, I can write a good bit about David’s father and a little bit about his paternal grandmother, but how little I can write about his mother. I know the stories that David told me, but second hand those stories don’t have color, they lack dimension. Cheshire’s first name, Inez, was for David’s mother. Everyone who knew both Cheshire and the original Inez said at one time or another how much Inez would have enjoyed Cheshire. Maybe it is only that that is so very clear -- a woman who would have loved a stubborn, bright, wild child whose life path was a grassy bike path.

When Julia’s intensive autism therapy supported by the state waiver program ends in June, I will be able to apply for post-intensive funding. There are pretty strict rules as to how I can use these funds but it looks like I might be able to use some funds for an i-pad and appropriately related apps. If anyone knows of apps that have been shown to be useful for kids on the spectrum or kids who need extra support in school, please let me know. Almost anything educational works and apps that teach independence or social skills are what I am looking for. Subjects I can think of are telling time, counting money, using a phone, conversation, reading comprehension. I’ve been trying to figure out how I could buy an ipad, so finding out about this opportunity is perfect for the summer, but now I have to put together a budget.

I thought that Julia’s behavior was evening out throughout the week, but today at therapy she did not start out well. While she was playing with another kid, she turned around, stuck her butt out, and tried to fart on him. The kid thought it was funny which didn’t help matters, and Ellen had to pick her up and carry her out of the room. Where? Where? Where did she get that? “I won’t do it again, Mommy,” she promised. Yeah, but what will she try tomorrow?

She argued with Ellen after Ellen took her out of the room and she got angry enough to bite her. Not hard, and not for long, but she bit. This used to be a frequent occurrence but she has not even fooled around pretending to bite for a long time.

At the same time, she finally broke through her reading level of 18. She can decode at a much higher level, but her comprehension is what is holding her back. Last week, she passed 18 and she was very close to passing 20. 22 would put her on a third grade reading level but I don’t know if she’ll hit it before school is out. She is writing independently. Her writing is very simple and sometimes in a rush to write what she wants, she will skip words. She is so happy to be writing words and sentences.

18 April 2012

27 years ago this evening at about 9:25, our family received an infusion of grace, known to all as Cheshire. She has grown to be a wonderful, compassionate, caring woman and gives her family and friends so much love. How David and I managed to raise such an incredibly person, I will never know. Happy Birthday, Inez Cheshire.

16 April 2012

written 15 April 2012

On thursday, I mowed the lawn. Give me weeds to pull or a bed to dig up, but oh, I hate mowing. But the truth is that it took me less than 2 hours. I did have a bit of trouble with the mower at the end and I am not sure why. If I can figure that out, I will be mowing this summer. Maybe next summer, I’ll get someone to do it again, but for now, it is my chore.

Saturday, the weather was lovely. Julia drew on the sidewalk and dug for bugs. I tidied the front garden and we took a long walk. The cherry blossoms are blowzy with ready to wilt blooms. Their light sent is everywhere and my eyes cannot take in enough of them. It is the time of year where flowering plant after plant are budding and blossoming, and it is the time of year that I wish I could slow the parade just a little bit to take in and savor the loveliness. As a kid, we lived on a dead end street that led to Branchbrook park. It was, at the time, the second biggest cherry blossom display in the country, and every year during the week or two when the blooms were at their best, people would crowd the park to enjoy the display. I spent a lot of time in that park but cherry blossom time was the only time that I remember us going there all together -- my parents and siblings and grandparents, and sometimes other relatives or friends, would spend a Sunday afternoon walking the paths, climbing trees, taking pictures and taking in that beauty. I cannot see a cherry tree in bloom without thinking of that time, and I cannot look deep enough to satisfy my lust for such beauty in the Spring.

Ah, beauty. Eye of the beholder? This happened and my vanity caught me up short. At the church Cabaret, I tended bar for an hour. No big deal pouring wine, getting beer and collecting money. I have not gone to this event before and I dressed down with a sweater and jeans, but they were fine. An older man -- at least my age or a bit older -- came up to the bar and ordered wine. We were chatting about the wines offered and another woman came to join me at the bar. She is probably in her late thirties and was wearing a very pretty dress and looked really great. As soon as she came on the scene, the guy turns all, and I mean all, of his attention to her. I had trouble rousing enough attention to give him his change.

I have never believed that I was beautiful. Yes, my loved ones have thought so. Yes, it would have been ever so much more efficient to be beautiful during all that time I wanted to work in theater. Talent or no talent, beauty is an asset like none other. But still, I’ve just never been someone who was interesting or attractive because of my looks, but, but . . . well, geeze, this was an ego blow. I have never had the experience of absolutely disappearing. Fading a little, sure, but disappearing? I read somewhere how little old ladies were so useful because they were practically invisible. Is this my welcome to little old lady-dom?

I sorted pictures again last night and tonight, working on what I have from my parents. Again, the holes are what impresses itself on me. There is only one baby picture of my father, a very few kid pictures and then high school pictures. His pictures pick up during his navy days and then when I was born. My mother’s are the same, but her family took a few more formal pictures during her growing up. I assume that neither family had a camera. There is not one informal picture of my mother until she was a teenager. There are a few of my father but I imagine they were taken by other people and given to my grandmother. That all changes after World War II. There are two photo albums covering the first five or six years of my life and almost the same for David’s family. When I wish that I had some great insight into my grandparents through their pictures or some writing, I have to remember that my parents never saw a picture of their grandparents. I never heard stories of any of the great grandparents and only have a very few from my grandmother about her grandmother. We grew up without that history. How does that shape a family?

Julia and I saw Mirror Mirror on Sunday. Sunday was a strange windy, stormy, but not rainy day. She was able to watch the movie with ear plugs but without headphones. And she really enjoyed the story as well. Silly, warped telling of the fairy tale, but Julia loves those strong, brave, valiant heroines.

This summer’s stress on self care needs to include folding clothes and making her bed in the morning. She can do these things but now to get it into the routine. Maybe a chore chart -- we call the chores that contribute to the easy running of the home, Family Work. We’ve called our work with Marilyn the same, but with Marilyn, the Family Work is about our hearts, at home the Family Work is about learning to “live with care.” So, chart or not? I would expect a chart to be connected to reward, but I don’t really believe in rewarding chores, and for Julia, at least, there are so many other behaviors that she can be rewarded for. Still, I need her help and need to be able to depend on her for self-care and home-care as she grows. Here is another think that I never really attended to with Cheshire. Cheshire grew up without many regular chores and with little expectation of house work. I would rather have her doing school work and practicing her music than washing dishes. And for her, it worked. At the appropriate time, she did take up some household chores and she is always happy to pitch in when she comes home. I am thinking it is different for Julia, but by framing it as work towards making our family strong and happy, possibly it is serving on two fronts. I don’t know what of it she understands, but she does on occasion say as she is bringing grocery bags in from the care, “This is making us a strong family. Right, mom?” Yes, indeed.

13 April 2012

Julia has been gone for a bit more than 24 hours. I’ve received a few updates and pictures via text messaging from her special ed teacher. She appears to be having a great time playing games, doing camp chores, and sitting around the camp fire. I hope that marshmallows were included in the menu because she really loves to roast, make that burn, them.

Of course, I worried and fretted about her the entire day -- what if, what if. I know how fragile life is and it is not that it isn’t fragile when she is with me, but having her an hour away from home without me is giving up more control over her than I am used to.

But yes, I enjoyed my day. I did some annoying tasks trying to get my voice mail working -- Apple blames Sprint who thinks that it is probably my iphone. I was also on the phone nudging the house sale along. It is now April and our contract said that we were closing the end of February. If I was the lawyer in this circumstance, I’d have no trouble with all the explanations and excuses, but as the seller, I am not so good. Patience can wear a good soul out!

For the evening, Mary and I went to dinner together and then saw The Hunger Games. Total escape with some good conversation.

Checking in with various friends after spring break, I found out that more than one had some very hard parts of the break. Either I never had those times with Cheshire or I’ve completely forgotten about them, but I found some camaraderie in those admissions. People with perfectly wonderful and typically developing children had some rocky times too. Disturbances in normal routine can be hard on lots of people. So, I now sound like quite a simpleton or someone who is so bound up in my own small world. All true. Still, it was reassuring. And then, having Julia back in school and looking at calendars, I had to notice the I hit another anniversary of David’s death the day before our FUS Seder. I have been able to ignore the date to some extend the last few months, I don’t want to make the fifth of every month a special day, but the heart and body remember, I am sure. I was a pretty okay parent as part of a parenting team, as a single mom I still struggle.

Later, Julia and her class rolled in a bit past 11. She was a bit dirty, a bit sleepy, happy to see me, but wishes the trip had gone on longer. I consider that pretty much an 11 year old opinion. Julia participated in all of the activities including a game of tag called predator and prey and a low ropes course. At the nature center she held a big snake and a small snake and she loved the marshmallows.

We had a quiet afternoon. I did an errand in Stoughton and then went home to make some chicken fried rice. We ate a late lunch and watched Ponyo while we snuggled on the couch. I was hoping that Julia would nap but I was the only one dozing. This evening, I bartender at a FUS fundraiser and Julia went to childcare. She spent the time looking through books instead of doing crafts and organized games. Just before we left she asked when the “parade” started -- the kids paraded through the main part of the party with the masks and shakers that they had made. Of course, the parade happened about 20 minutes before she asked. Some times it all bothers and worries me so much. Tonight, I had to just smile at her. Julia is who she is. I had planned to do my shift at the bar and then get out of there, but I walked around the party some. I still feel so uncomfortable socializing alone. I feel more single than I ever have, but single is not comfortable in a room full of people, most of whom are coupled. I am doing more at church these days and I am relatively sure that in another year there will be people to talk to and hang out with at parties. It is just getting over that hump for me. It has always taken me awhile to feel comfortable in a crowd. It is just that I used to have David to fall back on during those uncomfortable times. Now, just me.

And Julia was exhausted when we got home. She did not fight me at all to stay up later, just meekly went upstairs for a quick shower and a few page to read. I think she was asleep before I turned out the light.

11 April 2012

Yesterday, I looked at and ordered the first of the picture/document files in the big chronological file. It was the file with pictures and documents about my paternal grandparents. I have pilfered that stash of photos, framing and hanging the pictures of my grandparents and their friends at various weddings. Still, what struck me is how little there is. I have a rich store of memories but pitiful few mementos. There were not reading and writing people. The only writing I have is their signatures on mortgage documents. Because my grandmother received some letters, I assume that she also wrote some, but possibly as friend of hers did her writing for her. I don’t know.

Not knowing so much spurs me on to the sorting and ordering. I also started writing what I know about my grandparents and my impressions of them. I filled five pages and I am not quite done. I fear the I will not have much to write about David’s family and they will be lost to my girls save what they remember for themselves. I wish that David had taken the time to write what he knew of his family. I will do my best.

Some Julia things: Julia tied her shoes for the first time by herself two days ago. Truth be told, she may have been able to do this previously; however, she was generally unable to do it a few years ago and to give her some independence with getting dressed, she wore only shoes that were attached with velcro or were slip ons. I bought her a paid of regular tie sneakers last weekend for the camping trip she is going on with her class. The first time she put on the shoes, she tried to tie the laces. I let her struggle for a little while. She asked for help and I showed her how to tie using the “bunny ear” method of two knots. I did it slowly and talked it through as I did it, and then left her to do the second one alone. And she got it.

She is learning to play hangman and “hot and cold.” With hangman, she is learning to keep the word secret and a tougher challenge, to guess letters and not words. I am hopeless at word games. I have no imagination when I see a bunch of blanks. I never figure out the word. Julia, on the other hand, letter crunches in her head. She is not good at it yet, but she might be.

Tomorrow morning, Julia is off to a camp called Upham Woods with her class and other fourth grade classes. Her teachers have foreshadowed the activities and the rules. We have schedules and picture maps. We’ve talked about it at home, and Julia slept over at Amy’s house to see how she would feel away from home. Her teacher and I have been emailing and calling. Julia is prepared, much more prepared than the rest of her class. I so hope that she feels okay about the experience.

i had a lot of meetings today -- bank financial advisor, social worker to see Julia’s continued eligibility for state services, noon thai chi, the religious education team meeting, as well as doing some very important birthday errands. I am bushed and read to close my eyes.

09 April 2012

So yesterday, Julia was having trouble doing what her therapist told her to do. She got angry, the therapist suggested she take a break. Julia agreed to take a break and asked to take it in her room which is unusual. Her therapist agreed to the request and Julia marched upstairs, went into her closet and shut the door. Her therapist followed in upstairs after a few minutes and was very uncomfortable to find that Julia was sitting in her closet in the dark. Julia has always told me that she didn’t like the dark and insists on sleeping with a night light. The therapist asked Julia is she wanted to come out of the closet and Julia said she needed more time. She offered Julia a pillow to sit on and Julia took that. After a while, Julia came out of the closet.

Today, when we talked about it (somehow there was no time yesterday), Julia said both that she liked the dark and that she was scared of it. She told me that she wanted to be a girl in a dark place. Last week, with Marilyn, Julia worked on her work book page that explained how the little dinosaur was sometimes make to stay alone:

“When Bai-Bai’s anger exploded like a volcano, the Ayi gallimimus could not calm her down. So the Ayi gallimimus put Bai-Bai in a part of the nest that was dark and far away from the other dinosaurs. Bai-Bai hated it there. She imagined hurting the Ayi gallimimus for hurting her. Bai-Bai imagined hurting everyone who hurt her.”

Julia drew a picture of the t-rex stepping on the Ayi gallimimus’ neck. Is the retreat to the closet a part of the story? Is it reclaiming something she lost? Is it just coincidence? Is it a sign that there is more wrong in her brain?

One of her current therapy goals is to identify what she can do when she is feeling specific emotions. As the therapists try to work through this goal, it is more and more apparent that although Julia is good at identifying emotions in general once they happen, she is unable to describe how she feels or looks when she experiences an emotion. Now, I am not sure that her identification is merely guessing. Julia has a great ability to guess and appear to understand things when in truth, she is gauging the response of the person asking the question and answering in a way to please her questioner. Her focus is on the questioner and not the question, and there is no learning related to the question going on. Julia has used this method of answering questions doing addition and subtraction for months. Now, I wonder if she is using it for the emotions work she has been going on for more than a year. Have we been reinforcing her focus in the wrong place? Providing her with a worthless skill?

Somewhere I read a story about perceptions of people with autism. Watching a movie of two people dancing in a room, the person with autism came away from the scene and could explain everything about the light switch that was in the background of the shot. He had only noticed the dancers because they interfered with his view of the light switch. I wonder if this inability to find the appropriate focus is behind Julia’s seeming inability to understand concepts that we’ve worked on for a long time. Does this explain why she is unable to answer a question about a concept when the question is phrased differently or is unable to answer months later when we try to build on a previously learned concept? If what she remembers is really about more accurate reading of the questioner, then it makes sense that she cannot remember the content that we thought she was learning.

And there is the dilemma that at some level, Julia is almost always motivated by anger -- other people’s, mine, mostly her own. So, asking her to identify how she feels and having her answer that at the most absurd times that she is angry may not be far from the truth. It may be the truth.

During this break, we’ve been working on an art project that was sent home by Julia’s art teacher. I have to check and see if I’ve explained it already. Today it was time to put the small pieces, that were worked on individually, together. I helped her lay out the pieces in the correct order and then asked her to tape them onto poster board. No matter how many times I explained it -- laying the small squared in rows that were identical to the rows that they were laid out on the table, she could not do it. We had an OT appointment and I explained what happened. I also talked to our lead therapist who I saw later on. Our OT suggested that it wasn’t a matter of not following directions or simply just not understanding the directions, but some inability to understand spatial relationships. When we got home after therapy, I drew squares on the poster paper and numbered the squares the same way the pieces were numbered. Finally, she could put the pieces where they belonged and tape them down.

School begins again tomorrow and I am very grateful. I am not optimistic about Julia’s ability to learn anything. I am doubting that what I’ve perceived to be progress towards a social, learning person is nothing but a refinement of her very fine survival skills which are of very little use.

And then, yet another grief related emotion. Lately, I have felt more jealousy, sour grapes, and general mean feelings towards the rest of the world than I ever have. I've never thought of myself as a misanthrope. Actually, David at times could be quite a misanthrope and I used to espouse an optimistic generosity of spirit.

Last week, I watched a middle aged man casually look through his wife's handbag for some change. I was green eyed jealous as he picked out some money, kiss his wife on the cheek, and exchanged a smile with her. There have been times lately when a friend on Facebook makes some announcement of some small good news and it is all I can do not to unfriend them on the spot. And when there was news about Dick Chenney's heart transplant, all I could think about was the fact that no one mentioned that 20% of transplant patients don't survive.

Is this the dregs of grieving or are there more ugly feeling to dredge up?

08 April 2012

Easter. After Passover Friday. I had not thought that my problems with Julia earlier this week related to our family’s favorite holidays but undoubtedly they did. After Thursday, we have been in recovery mode. So much other junk crowding the present -- how much baggage can one carry? So much anger and resentment, and such need for healing.

I made passover brownies on Friday while Julia had therapy. We swung back to a better schedule of early mornings and bedtimes closer to on time. Mary came over and let me talk and cooed over me to settle me. The seder at FUS satisfied my again this year. And I did not tear up at every passage read and song sung. Well, a few times but I was not on the brink of breaking down on every page of the Haggadah. I sat with someone I knew and chatted with a young couple who are new to the church. The woman who seems to be the guiding force behind the FUS seder introduced herself to me, saying she has seen me as lay associate at services. No one asks, are you Jewish, but talk to anyone long enough and they will tell you their story and look at you with arched eyebrows to prompt you on to tell yours. The most interesting one that I heard on Friday night was a woman who was raised in a long-time Unitarian family in which one aunt married a Jewish man and converted. As this woman explained, her aunt converted and brought her whole family into the world of Jewish traditions. And being good Unitarians, they all embraced the new traditions.

At least twice during our long association, I offered to convert. Not out of religious fervor. Could it be called traditional fervor? I have, from the first time I encountered David’s family’s traditions, such a sense of communion. A sense of ease and rightness. I used to describe how I felt that my old country Ukrainian traditions somehow matched with Jewish observances. But that is so much bunk! I was never a comfortable Catholic, and never an accepted Ukrainian. As a second generation American, I was not Ukrainian enough for “real” Ukrainians. And even among my mother and her friends, there was a distance between them, my parents’ generation, and us. Us who were so much more assimilated. It was like we or maybe just I, I am not sure, never got the secret handshake. Never learned the code. I tried a few times to fit in -- in college with a student club filled with children of the DPs who were utterly and completely Ukrainian even though they were as such as I was born in the US. And later, in the East Village when I joined a Ukrainian Choir that was not connected with any church. It was a really fine group, and I sang with them for about 6 months. Six months of going to rehearsals where no one spoke more than a few words of greeting to me, and few did that. Maybe it was and is just me, but I have never been welcomed into community with Ukrainians and have not been able to extend myself in such as way that I gain admittance to the community.

Except for the early days of our relationship when David’s father tried to keep our relationship from his mother, one time asking us to leave before his mother arrived, I was welcomed with opened arms into the family and into their traditions. If there were misgivings about David’s goyisha girlfriend and then wife, they were not spoken to me and I did not sense them. So much more welcomed than among those whose blood I shared. And so, it was not surprising that when we thought to become associated with a religiously organization, I was willing to find a Jewish congregation.

It was, however, David who hesitated. He could not commit to a belief set that was so close to his early years. I am rather thankful for that now. I am a pretty happy Unitarian.

On Saturday, like some break of a fast, Julia and I went shopping for rain gear and wii games. Rain gear and socks and sturdy sneakers for the overnight camping trip that she will take with her class this coming week. And two new wii games which will form the basis of a reward system that we are cooking up for the summer.

We came home to dye easter eggs. Strangely or serendipitously, I had no problem at all finding a dinosaur themed egg dying kit. Makes me wonder about the rest of the world.

Then, we took a long walk and went out to dinner with Mary and Robert. It was a day full that was all about a less intense time together. And that was good.

Today, we went to Easter family service which was a sweet mix of Christian and pagan stories which ended with a grand easter egg hunt. Last year, when we did the hunt, Julia needed to be in the area set aside for the youngest children where the eggs were strewn on the grass and sitting on widow ledges. This year she could look for hidden eggs -- not quite the age appropriate area, but just one down from where her age peers were hunting.

We went home to an easter egg hunt in the house. David and I set out a hunt for Cheshire from her first years until . . . it may have been the year she went away to college! We all loved doing it, making the clues more sophisticated and challenging as she grew. Sometimes getting it right and sometimes have clues much to hard to anyone to figure out. It has been hard to do egg hunts with Julia, and last year, one of her therapists put eggs in the back yard for her to find. And I was finding those eggs all through the summer! This year, however, I wrote one word clues inside of eggs and Julia went around the house finding them. She needed help on a few but she was into the challenge and had I printed instead of written in my less than clear longhand, she would have been quite successful solving most of the clues herself. As it was, it was fun and she was thrilled with a basket full of silly treats and a little bit of candy.

We have one more day of spring break before Julia goes back to school on Tuesday. I will attempt another laid back easy day. I will, as my friend, Sharyn, suggested keep an eye out for the tools that I have been given to address my girl’s challenges. Yes, I do not doubt that those tools exist for me but I agree that the finding of them is the tricky part. And thank you, Sharyn, for the love.

05 April 2012

I wrote tonight about two very hard and bad days without much outside support. I am not going to post what I wrote. It is too raw, too hard, with a good dollop of self-pity. I’ve used the blog as a journal, vowing to share most everything of importance but I am hurting too much tonight to throw it all out into cyberspace. It takes a certain amount of courage, albeit strangely small, to share most of everything. After that, I just need a free shoulder. Self-rescue is still not in my repertoire.

I’ve complained over and over that I lacked my old resilience. Today, I wonder if I remember a great deal more resilience that I’ve ever had. These days have been about ever increasing challenges that I cannot meet alone, although there is no choice but to meet it alone. When a young child refuses to go to sleep, or a two year old has a time of tantrums, parents console themselves remembering that the particular challenge will disappear one day as the child grows and matures. I find the comfort of this remedy hard to give up. Today, I did not have the deep well of understanding, patience, and love that was needed to meet the challenges of the day. And those challenges will not disappear. Possibly ever.

04 April 2012

Us at arm's length

Sometimes there are no words to describe what goes on between my girl and I. Sometimes we are so very lucky to have a phone that can take silly pictures.

02 April 2012

Four in the morning in a condo with as many families as there are sleeping surfaces. This is not a time to be out step with the general population and awake. I am very much aware that my space bar has an audible click that may drive at least one of my roommates crazy. If I type slowly I can minimize the sound. Maybe slow typing will put me back to sleep.

This is a large, friendly, kid-dominated group --6 adults, all except for me part of couples, and 14 children. The children range in age from 6 to about 14. I really hoped that Julia would be included in one of the subgroups of kids but the girl close to her age, maybe a year younger, had a good friend with her yesterday, and those two were absorbed into the activities of some bigger girls. And the bigger girls don’t know Julia, and are unsure of her. The littlest boy tags along with his bigger brothers, proud to be included. One or the other is these kids has reached out to Julia a few times, and if Julia had taken the cue or if she had inserted herself into the hall tag game or sat around the hot tub with her feet dangling in the water and making kid conversation, she would have been accepted. Cheshire, at 11, would have had a great time. But Julia doesn’t pick up on the cues, instead she shows one or another of the kids her coloring or drawing or math workbook or offers M&M’s at inappropriate times.

I watch. None of this surprises me and yet, I have to admit that there was a small spring of hope that she would integrate somewhat seamlessly and not look to be so much the odd one out. This is the process of inclusion that has its heart breaking side. Many days, when I ask Julia about school, she tells me about some recess game that she played. I ask if she played it with anyone and she says no. I can see her in my mind’s eye alone with the activity and noise of playing children all around her. Yesterday, I did not need to imagine it.

Sometimes I comfort myself, remembering that I was a solitary child. I rarely played on the playground with my school fellows. I was not asked to join games, and my shyness prevented me from offering to join in. But shyness is not autism. I did play with my siblings and the children of my parents’ friends whom I knew from my earliest years. I did not miss broad cues to join into games, nor did I prefer lonely pursuits. Julia passionately wants to connect with other kids but cannot.

Still, I have some hope that by putting Julia in situations, however awkward as they seem at the moment, along with the direct instruction in relationship that Julia gets in therapy, that she will learn. Is this the hope of every parent of a disabled child? I know that Julia is not normal, yet after living with her for more than five years, I do not see her as that odd.

Other than Julia’s solitary state, I notice the small size of my world. Now, I have chosen it to be so, at least for this year, but for a moment or two at a time, it can scare me. I have created a very small cocoon around Julia and I in which we both function as individuals and as a family. We have small, quiet rituals that get us through our day. When David was alive, our family structure was always like this, but somehow the inclusion of another adult created a world for me that did not seem cut off from community. It was more that we were a self-sustaining very small community within ourselves. Alone, with only Julia, we are not a community, or I do not feel us to be a community. I recognize that it is this feeling that encourages me to do PTO work, to volunteer at church. I can feel like I have to work harder than most people to get a foothold in community, but that is merely self-pity. Yes, it is hard to feel a part of any community with my life partner gone, but my struggle to reconstruct life, to find community as a single parent of a disabled child is not unique in the least. My self-pity may actually be on the decline.

Tomorrow, or rather later today, we will begin again. The group has planned a morning walk, before an afternoon spent in the indoor water park. Perhaps, during the walk, I can urge Julia to join in with a few of the children, and again hope that she is swept up into the larger group when we reach the water park. Perhaps for a little while, it will come together for her. If it does not, she will walk with me and later I will hang out with her on the slides and splashy walk-throughs.

Perhaps, perhaps, perhaps. I have not lost hope for this child of mine. I can be sad for what I perceive she is missing in her childhood, but I still hope that she is able to dip a toe into some of the gleeful experiences of her youth.