Category: Growing a Daughter

Updates and stories about my daughter from China who came home with challenges described in letters—PDD-NOS (on the autism spectrum), ADHD and RAD (Reactive Attachment Disorder). Her learning curve has been steep and therapy is a way of life. School and social interactions are a challenge. Making art is a way of life. So is a vivid imagination.

turnings

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

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

Ok, just a bit of hyperbole.

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

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

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

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

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

Big breath in, big breath out.

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

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

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

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

Posted on by Suzanne Buchko 0

peony & narrative

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

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

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

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

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

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

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

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

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

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

Posted on by Suzanne Buchko 0

fair

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

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

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

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

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

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

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

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

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

Posted on by Suzanne Buchko 1

ah-ha

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

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

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

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

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

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

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

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

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

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

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

Ah-ha.

Posted on by Suzanne Buchko 2

music camp

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

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

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

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

Yeah, right.

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

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

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

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

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

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

Posted on by Suzanne Buchko 2

time away

I feel the drag of not writing for what feels like a long time.  Checking now — and two weeks is as long as I can go.  Sometimes, like this time, I mean to catch up but don’t want to or cannot take the time, lose more time, lose momentum and refuse to write.  Until I cannot stand it any longer, and that is today.

I’ve had the odd feeling for a few days that I have been rehearsing living for quite a while and that I am now living.  It has to do with grieving — that sheer will of putting one foot in front of the other day after day no matter the reason, the need to survive for a child, for a reason unnamed, the confusion of why.  I did not realize that this was what I was doing.  Yes, the willful survival during the first year or so, but I imagined myself past that a long time ago.  Last week, I realized as I was making my bed that I no longer pull up the covers with the promise that I will live the day and be rewarded with a warm bed and the oblivion of sleep when I am tired.  It startled me that I did not need the promise of oblivion to begin and get through the day.  I did not even remember when and if I first made that promise to myself.

Julia report:

  • Last weekend’s RE class was long and boring, too much material and just many, many words without illustration and only one diversion — a “science” experiment, pouring different liquids into a cup to watch them turn colors and wipe away color.  It was an illustration of an closed and open mind.  Julia was quiet, sometimes preoccupied with picking fingers or her own thoughts, but not at all disruptive.  After class, I asked Julia what the class was about.  She was able to tell me about the science experiment and absolutely nothing else.  Words, without embellishment, just don’t work for her.  This is not a new observation but a good reminder as I get ready to talk to middle school teachers.
  • We are still riding the new big bike around the block whenever it is warm enough to do that.  I am still running behind her.  She is not yet secure enough to take on more.  However, balance is good and she is consistently braking with hand brakes and not jumping off the bike.  Getting started is not always easy.  I am hoping to have the patience to wait her out and run around the block until she is ready to go further.
  • At Gallery Night last Friday at Randall School, Julia sold the six pictures of birds that she drew for the event.  Julia has had a hard time letting go of her work to anyone.  Favorite teachers and therapists have asked for a picture that Julia has made and she has flatly refused.  So this felt like a big step.  Money helped.  She took her $6 (and we could have charged more) and spent it on what other kids made — a big yellow flower and a pen with a flower on one end.

Some friends have offered to buy pictures from Julia’s fairy dinosaur ballerinas series.  We made prints for teachers last year at the end of school.  I am wondering if I can interest her in making more pictures and also making prints and/or cards as a summer project.  We could sell to friends and if we did a healthy number have a booth at our church art fair which is in the fall.  I see a number of reasons to take on such a project.  My hesitation is Julia’s ownership of it.  For so much of the time, it is me or teachers or therapists who lead the way for Julia — setting up experiences, guiding her through them and then doing most of the reflection when the experience is over.  I admit that at time, I get tired of leading her.  Typical children are led as well — the decision to engage in suzuki lessons after a very little child expresses an interest is about leading.  It is more than a rare four year old, or 7 or 10 year old who wants to practice daily.  And I guess I am still on that typical child’s calendar.  By 13, I expect that the child will want what they are doing at least as much or better still more than the parent.  Not so with Julia and I hope that I am doing what is best when I devise and push projects and activities.

Last Friday, during Gallery Night an art teacher from another school in town did henna hand painting.  Julia and I both had our hand painted — hers in a lotus design, mine with a sunflower.  The flowers were lovely and I so enjoyed the decoration.  Mine is gently fading; Julia’s less so.  I have my hands in more water than she does.  This is the child who will one day get a tattoo.

I have joined the Forgiveness Challenge (http://journey.forgivenesschallenge.com), Desmond and Mpho Tutu’s 30-day, world wide online workshop.  I am on day 3.  Of course, there is much work to do.

Posted on by Suzanne Buchko 0

Seder

A day after an FUS Seder and a day before Easter Sunday and waist deep in spring break.

Julia and I went to the FUS seder yesterday.  There is a Haggadah written for Unitarians and there are a lot of cultural Jews who are Unitarians (lapsed Catholics also make up a decent part of congregations).  Previous to this time, we went twice in 2011 and 2012.  Both times, I was uncomfortable.  There were not many kids and Julia stuck out — her behavior was not out of control but she was not interested in  the readings, hated waiting to eat the food that was laid in plain sight, and was not really talking to people she did not know. None of this was out of the realm of normal behavior for her age group.  It was just that her behavior was in comparison to the adults who were there.  Perhaps it was as simple as my own comfort level.  I was not at home at FUS.  I was not sure I belonged at the Seder and did not want to explain that I was there because David was Jewish, I loved doing Seders with him, and I wasn’t ready to do it at home.  I think I left the first one red eyed and mute, it had been a very long night.

This year, finally, finally, it was different.  There is something about assuming home.  I signed us up for set up and we were there two hours before the festivities.  We set tables and put ceremonial foods out for each table.  I did whatever a very sweet older woman told me to do.  In our chatting, I found out that her husband had died 4.5 years ago and although she still did Seders at home, doing at at FUS for the big group – almost 50 — was very comforting to her.  I shared my experience and I did what I have always been good at.  I helped her serve — getting up before the end of the service to help her with the soup and getting the soup bowls on the tables before the soup got cold.

We sat with some people we know.  Not everyone at the table, but some old neighbors with whom it was wonderful to catch up with and a couple who usually go to Saturday service like we do.  Conversation was not always flowing but I could feel myself extending myself and adding to keeping our socializing going.  This is in sharp contrast to the last few years when I’ve felt myself a drain on social gatherings and a conversation stopper.  I am not totally comfortable in large gatherings or gatherings of near strangers but it is a relief to have whatever I’ve needed to engage in company once again.

Julia is also at home at FUS.  She helped at setup some but she also sat and read her latest adventure book — a birds with swords story — and talked to who ever passed or sat close to her.  Some people know her, and some are surprised by her, but I’ve stopped feeling the need to explain her all the time or to protect her or her listener from what is difficult to understand.  She is practicing.  People at FUS will help her or will move away.  And most will help.  Last night, a number of them told me how charming she is.  And I smile a very grateful thanks.

Once again, there were few children — a baby just one, and two little boys, 4 and 6 — and none to read the four questions or open the door for the prophet, Elijah.  Julia jumped up and ran to the door for the later, and was more than willing to read the four questions.  (In 2012, she could not do the reading) She didn’t love the whole ceremony but she was present for most of it.  She took in all of it.  She read along and out loud at the appropriate times and took a stab at singing the songs.

The Haggadah that we used omitted the story of the four kinds of children.  That is my favorite part because the message is about including all children in the reading of the Exodus story, the teaching of the next generation.  In the past I had thought of Julia as the child who did not even know how to ask any question, last night, she was almost the wise child, willing and eager to ask questions and to learning about her ancestors.

In a little while, we will pick up her new bike.  We ordered it last week, and I’ve already been to the store and asked for some adjustment to be made before we pick it up.  I am hoping.  Yes, I am hoping that she will love it and we will be biking all summer.

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transitions

I am going on retreat this weekend.  My last scheduled retreat through Quest.  It took me signing up for a 2-year program and promising to go to all of the retreats (6 in all) in order to allow myself to take time for myself.  Now, I need to make sure I keep it up — like exercise, like practice, like anything out of my daily round, I can forget so easily how important self care is.

When I was part of a couple, it was not necessarily easier to remember to take care of myself, but there was  . . . I don’t know a word for it.  Couple-time.  Down time together.  We took time — as simple as a walk or a late night tea, sitting on the couch cuddling watching a movie.  There was self care and also care for the beloved and most of the time that was enough to fill me.  Perhaps that is another reason to couple.  I did not have to work at care.  I cared because I loved.

Now, it needs to be deliberate.  And so be it.

My sphere is small.  Sometimes smaller than I realize.  A friend called from England last night and my phone was turned off.  When Julia went to bed, I went to call back and discovered that I could not make an international call on my cell.  It struck me that my world had shrunk very small if, in the last four years, I had not even discovered that I could not make international calls.  Of course, now I remember that it was not a concern when I had a landline and then we used Skype all of the time when Cheshire was traveling.  But in truth, I have not thought about this is a long time.  The idea makes me claustrophobic.  How small I have made my box.  How insulated.  I understand the urge and the need for such diminutive size.  Healing, at least for me, is not done in a large forum.  Small feels very safe.  And after all of this change, change is still a challenge.  I find I must be vigilant to support it.  I proclaim and most of the time imagine that I have readied myself to accept and embrace change.  That it has become my way of life.  But however true that may be in some realms in others it is a true lie.

I have stopped using commas.  I have overused them for years and now . . . when?

Julia:  Very happy to have me away for a weekend and to spend the time with one of her beloved therapists.  I could wonder if this means good attachment or bad.  I both fear and embrace wholeheartedly her need for independence.  We are working through a trauma book with Marilyn (attachment/trauma therapist).  Julia has been drawing pictures of a “sad, mad, scared” brain and of a happy brain.   The pictures are quite amazing.  She captures feelings.  When we ask her to make these drawings, after reading a description, she happily trots to the table and begins work.  Yes, I think she thinks in pictures, and although I can talk about it and read about it, I really do not understand it.  I so definitely think in words.

Last weekend, I wrote down “rules” for solving simple math word problems.  The rules are illustrated — at least as well as I can do that.  We have been using the rules.  I had Julia do her paragraph writing for the week about the rules for problem solving.  Another way to get the rules into her brain.  I am not interested in any math work — which I imagine will always be a challenge for Julia — for its own sake.  No “two trains departing from opposite sides of the world going different speeds with some finite number of stops each and where do they meet.”  I want her to be able to go into an art store, order supplies, and know if she has sufficient cash to pay for them.

Julia broke her first easter egg. Her thumb went right through a shell she was working on.  It is inevitable to break a few eggs in the beginning.  Who knows how careful you must be with eggs until you break a few?!  She handled it very well — felt badly, didn’t really want to throw it away but didn’t want a smelly eggs around, and moved on.  There is evidence of her years of intensive therapy!

And my Curriculum Training Course with Mindfulschool.com began last evening with an online video introduction.  It is a big class — 40 on the call, at least three times that in the class.  I am excited to get going.  I can almost feel myself crossing a threshold.

Posted on by Suzanne Buchko Aside 0

fun

Julia got out of school at 10:45 and I was in a LEND workshop helping to facilitate for the day. One of our respite providers was able to stay with Julia until 2 and then dropped her off at Waisman. Julia hung out and on her iPad while I finished up my day.

It has been my habit to go home after a day like this and have a work night. Math, reading, cello, social studies and anything else that Julia needs to be working on. And a decent supper from scratch or the freezer. We do not take many days off.

And so, we took the rest of today off. We went to a 4:40 show of the Lego Movie and for the first time ever, I wished I was a 9 year old boy who was obsessed with Lego. The plot was nothing to speak of but it was fun and silly and had some really cool Lego effects — my favorite was the undulating Lego ocean. We had popcorn and stayed through the credits. When we got home, Julia dragged out her Legos and went to building — of course, what else? And I made some rice and scrambled eggs with rice. We watched another episode of Star Trek and Julia went to bed. I am looking for fun. Some undemanding, indulgent, un-useful fun.

It has been a long time since fun has been on the agenda. I don’t know if that is mainly because of the therapeutic life that we’ve led or grieving. Or some combination of the two. There is so much work to do but recently I remember weekend afternoon naps while Miazaki was on the tv, walks, just walks, toys all over the house and long conversations with a beer. I remember Julia laughing much more than she does now as a rule. And I can remember this without tears or depression or regret. I can hold the sadness and still wish I was a 9 year old boy. I realize that I’ve never had the discussion with anyone about balancing a therapeutic life with fun but perhaps I need to find someone to have that discussion with.

It is time for fun.

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strings

I ran jogged around most of the block yesterday morning — .75 of the block to be exact.  I need to get my body moving and nothing that I have done before is appealing right now.  Perhaps yoga or more tai chi but spring is coming and I yearn — yearn is a bit too strong to put the impulse — to be moving outside.  Gardening is out of the question right now.  Mud, mud, mud.  And there is still little bits of snow all over the yard.  And I’ve never tried a run.  The fact that Cheshire and Lisa have done it and are trying to make a Thanksgiving run part of our holiday celebration make me curious.

Julia is performing in the Spring Strings Festival today.  She passed — could play the song by memory — three tunes.  That puts her at level 2.  There are a lot of fifth grade kids at level 2.  She probably worked harder than most of those kids to learn and memorize those tunes.  And she is the only kid out of hundreds who has an aide sitting next to her, but she is there and playing.  Watching the rehearsal yesterday afternoon, I almost burst into tears.  I am so proud of her.  So happy for her.  Of course, when I told her, she was polite and happy to be doing the concert, but it was no big deal to her.  And isn’t that wonderful too?

There is a new sadness in the collage.  I am so proud of Julia and her playing.  Especially proud because music was such an important part of our family when Cheshire was growing up.  The sadness comes from not having anyone to share this pride and happiness with.  No one who knows the day-to-day struggles and can bask in the sunshine of rewards.  I guess I’ve felt this before, since David died, but when I did it was mixed with so much grieving that the feeling did not stand out.  And there were so many more days of struggle than of triumph so the achievements were not quite there to stand out.  Living away from family during Cheshire’s growing up, there were never grandparents or aunt and uncles to enjoy successes, but just us and our friends were enough.  Today, I text Cheshire and post of Facebook and send an email to Julia’s teacher.  Right now,  I want to scream that that is not enough!

I sit drinking tea, my head aching from being so close to tears.  I am grateful for every “like” and comment on Facebook.  Cheshire will write and be happy for us, and Julia’s teacher will be thrilled.  Would I have felt this alone had I chosen to be a single mother?  Certainly, life would have been full of circumstances like today.  Of course, I might have dealt with this sorrow when baby first walked.

The other truly incredible things about yesterday’s rehearsal was that Julia saw lots of kids she knew from both school and church school.  She said hello to all of them and called them by name.  Her therapy and school teams have been working on greetings and having her recognize individual kids for this entire school year.  At the beginning of the year, she did not know the names of many of the kids in her class, and I don’t think that it mattered to her.  They were “the kids” or “guys” to her.  I think they were a blur of noise and movement in her consciousness.  In the Fall, she and I sat with the composite class pictures for her class and the class that is paired with hers.  We reviewed names almost every night for a few months.  She learned the names but I did not see much generalization for what seemed like a long time.  Recently, when she tells me the three things she did during the day, names of different kids have surfaced.  Her observations are not deep but she calls one or the other her friend or her best friend.  There are still many times when she does not “hear” greetings said to her, but last night she had something to offer to everyone that she knew.

And math word problems, of which we do three every night, are getting ever so slightly easier.

Julia is on a roll!

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