first day of school


2:00 p.m. on the first day of school.  I have yearly dreams on the first days of school of doing something wonderful after I drop Julia off.  I thought I would be out in the garden moving plants and maybe get to the gym today.  Instead, the day up to this point has been sitting at my desk sorting though mail put aside, non-urgent financial matters, social security renewals, insurance questions, and calls to, or more precisely messages left for, therapy, therapy. therapy.  I have about an hour before pick up and instead of trying to cram something delightful into the time, I am just going to sit and tap. Continue reading

lessons, gardens & travel plans

The days just move along and move along.  It is all a-whirl.

Seventh grade ends tomorrow.  This is only the second time that Julia has greeted summer with enthusiasm.  She understands enough about time to appreciate breaks.  I find the transition from school to vacation unnerving.  Work in school has been on the wane.  Her big “country project” for social studies was finished two weeks ago.  Her last book review and spelling test about a week ago.  Math has dribbled to a close. Continue reading


Sitting on the front porch, drinking a giant glass of iced coffee and eating a very sugared scone, both of which I have sworn off and desperately needed this morning.  After inhaling the scone and sucking up half the coffee, I begin to feel humanity seeping back into my bones.  I look down to see the nose of a squirrel about six inches from my foot.  I startle at exactly the same moment as the squirrel—I know this guy, he spends many a morning on my porch.  He moves around me, not quite out of sight. This is his porch as much as mine.  I feel my heart beat quickly after the startle and I imagine I see his racing in his chest.  We are not friends, both wary of the other, but not exactly unfriendly either.  I put my plate of scone crumbs on the floor six feet from my seat, half the distance between us.  He is still; his eyes on me.  I sit back down and he advances to the plate much more quickly that I would have advised had I been his mother.  He eats.  I do not offer him a sip of coffee but wonder if caffeine would have made him a squirrel-ier squirrel this morning.   Continue reading

curmudgeon cracking

julia swinging in the apple orchard.

I’ve been wallow-y lately.  Lots of stuff going on and little of it easy or smooth.  Last week, I cried to the universe: Can’t anything in my life go smoothly!?  I think the universe answered: no.  Honestly, when I get like this, I’d really like to climb out of my skin and give it away.  Who in their right mind would take it?  

Self pity.  Ugly, messy stuff.  A gaggle of quotations run through my mind.  I get it.  Self pity. A dangerous elixir.  


The school year is not winding down gracefully.  Julia was late to school six days in a row.  A lack of focus on doing the tasks at hand is the raison d’être — redressing a doll, picking up some reading, working on a lego piece has all taken precedence to getting washed, dressed and ready.  The loss of focus happens in an instant, my back turns, I make my bed, I run downstairs to start the kettle.  And Julia has been disrespectful to teacher twice this week — refusing work, speaking inappropriately, being generally mean.  I live in dead fear that this will escalate and mark her as a trouble maker.  I fear alienating the very people, her teachers, who are her lifeline to the world. Continue reading


I just finished writing about buy airline tickets.  I have no idea if it will be of any use to anyone else.  Still, I write.  I wrote while sitting in my favorite “French” cafe breakfasting on pain aux raises and cafe au lait while Edith Piaf wailed on overhead speakers.  And smiling broadly from time to time.  Me, not Edith.

Julia has had a hard few days.  Behaviors seem to be escalating.  I have no idea of why and the behavior is not echoed home.  Ach! I mean I have some idea—stress, noise—I’ve said all the before, but wanting to report and keep track.  Perhaps one day, someday, I will see some pattern that can be affected somehow by something we do at home  before or after school without just imposing grave consequences.  I still take the iPad away for days or weeks from time to time but that is mostly for at home behavior, especially becoming too engrossed in the iPad.  Julia does not suffer the loss of her electronics.  She quickly finds “real” activities and I suspect her behavior improves merely because that screen is not swallowing her whole. Continue reading

blue parts

IMG_2998I wrote this yesterday but after planting 400 bulbs, having a delightful dinner with a friend, and watching part of the last Star Wars movie with Julia, I fell asleep without publishing.  Ah, the writing life.

Observing myself this week possibly more closely than usual.  Looking for what to write about each day — umm, well didn’t work yesterday.  The mix of joys and sorrows and frustrations and blessings abound.  And the petals are falling on the dining room table.

Election result.  I am disappointed.  Not surprised.  I inform myself, I read, I think about who is running and what they believe in, I vote, of course, but I did nothing to work for those candidates that I believe in.  I don’t believe in turning away from our system in frustration and despair, but at the same time, I would rather not expend my energy working and advocating for the system.  Is that a mindset that just doesn’t work in a democracy?  Is it my job to be involved no matter what else there is in my life?  When I was in theater, I believed, however wrongly, that my art was all of the outreach I needed to do.  I would impact my world with my art.  I’m not saying that I really did that or that my work had some more global effect on anyone.

Later, when I worked for the federal court system, I was not allowed to be politically active in a visible sort of way and it was easy to embrace the judicial lifestyle.  Now.  Well, I did a little bit of campaign work when Obama was up for elections.  Didn’t love it, didn’t hate it.  I don’t feel it is my calling, but I hate feeling powerless or frustrate.  There are only so many productive hours in the day.  My plate does tend to be full but does that matter when I am watching the steady trek backwards in terms of policies that I think are important?

More middle school frustration.  More.  More.  In the assignment notebook last night was news of a science quiz.  There was a review sheet of sorts but it wasn’t clear whether Julia was supposed to fill out more of it than what was already done.  And she has no idea.  Her special ed teacher and I set up a procedure for taking quizzes and tests that involved getting Julia ready for tests over a period of days.  And so, a review sheet or sample test comes home a week or so before the testing day and we study little by little.  One night of studying does absolutely no good and it just frustrates Julia and I.

So that was where we started last night.  I had her read the little bit of material on the review sheet a few times and switched to practicing cello.

Today, I went in with her.  Talked to the special ed teacher who was also frustrated that the science teacher is not following the plan, but then again the aide in that classroom is different from the aide who was there when the plan was set up.  And I made my case for reducing the number of people that she sees.  Every doc and therapist that I talk to has agreed that Julia needs a smaller and  consistent staff.  When I made this pitched to the principal later, she talked about all the variables that can’t be controlled for.  And I agreed.  Someone is sick and out, someone is on leave, someone was needed in a place of higher need than Julia.  All of the makes sense and I know that Julia needs to learn to accommodate for that; however, if her people-environment is smaller to begin with she might start building some relationships that will allow for some change and flexibility.  As it stands now, it seems to be all change and transition for her— bells going off every 45 minutes, changing classes for each class, kids she doesn’t know and a building she is only beginning to recognize.  Some of this is the bedrock of middle school, but the plea that I am making is to make some changes where we can.  I see people as a possibility.  I think Julia’s special ed teacher can see that.  I am not sure about the principal.  It is system change that I am looking for and the powers-that-be would rather put a bandaid on the gap than change.

People with only neuro-typical kids tend to say that all kids face these kinds of challenges.  Middle school is a big change and some kids take a long time to settle.  I was going to write that if those people could spend one day with Julia they would know that her challenges with these change make typical kid settling into middle school look easy-peasy, but what strikes me is that if it is difficult for many kids, why is this the system?  I have read that middle school can be generally considered a wasteland between elementary and high school that needs to be endured.  I wonder why we are punishing kids for getting into sixth grade?  Why shouldn’t the system fit the kids instead of fitting those kids into an unfriendly and sometimes destructive system?

and again . . .

Call to action or just a terrible awful week?  Um, maybe 12 days.  And maybe both.  Processing and working to avoid leaning to despair or Poly Anna optimism.


So the terrible part.  Starting with last week — Julia unraveling in orchestra because there was no cello for her to play.  Tests without preparation to assess what was being learned when I could see the answer was ‘not very much.’  Projects coming home to finish without adequate instruction for me.  Sometimes not coming home at all.  Julia constantly rearranging the all important binder and losing its contents all over the school.  Julia picking and scratching at her head and growing bald spots — clear anxiety.  My own trip to the ER last Friday which postponed the teacher and staff meeting that had been scheduled for that day. Continue reading


I have not done any extra math work with Julia since school began.  She did have math homework and math-y science homework last week, neither of which was easy for her, but I have not tried to do more than assigned during the last two weeks.  Can I say that I feel like I am on vacation??

This week coming up Julia will have a spelling test on Tuesday and a book “review” due on Friday.  Starting on Friday, we’ve done a bit of each for the last three days.  The review is finished and she did her spelling sentences and is ready for the test.  The kid really is a very good speller.  She needed to look up definitions for almost all of her 10 words — narration, throughout, thoughtfully, essential — and some of her sentences are awkward or obvious.  My favorite was “Listening to my mom is essential in my life.”  The only word that seemed impossible for her was narration.  I don’t give her example sentences but I do try very hard to help her find definitions that are useful.  She is very proficient at finding definitions on the internet, but so many time the definitions shed no light on the meaning of the word unless you already know what the word means.  I was in seventh or eighth grade when I made the discovery — was I slow on the uptake? Continue reading

dancin’ dino

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

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

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

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

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

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

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

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

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

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

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

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

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

My notes:

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

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

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

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

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

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

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


How to explain utter stupidity.

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

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

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

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

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

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

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

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

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

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

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