looking for . . .

Casting the widest net I can.  I’m looking for a way for Julia to organize and remember.  These are two big challenges that she has.  I know she is not an unusual teenager in this regard but without these skills life is pretty stressful for her.  For us.

The usual assignment notebook is not enough.  Neither is simply supplying her binders, pocket folders and accordion folders (Her favorite right now).  She needs a system.  And she needs it to appeal to her visual learning style.

I envision an app to use with her cell phone and iPad to replace her assignment notebook.  Something that would be easy to add to or link other web pages, etc. to.

And then a physical system to use with notebooks or binders or folders.

If anyone has any idea or system or can recommend something to read to help me in this, PLEASE let me know.

reclaiming passover

73294681-8865-471C-BD31-9183956D91C9It seems like a long time ago now that we, make that I, reclaimed Christmas.  I don’t expect that the winter holidays will always be perfectly smooth but our last Christmas and then New Years cruise seemed to reset my holiday clock better than anything else.  Distinct differences and concrete plans worked miracles.  Prior to last year, I was not only missing our pre-death holiday ‘routine’ but also missing the friends with whom we shared many thanksgivings and a few Christmases—people and plans I thought would never change.  Then there was change.  Ah, embracing those Noble Truths.

Last Friday, another holiday clock ‘got’ reset— Passover.  David and I enjoyed hosting seders since before we were living together.  How many years ago was that? (Only Jan knows.)  Our seders evolved and sometimes disappeared while we were in school or traveling.  When we lived on Washington Boulevard in Indy, we had room for big parties and we indulged.  I don’t remember when David started writing our Haggadahs or when we began expecting Cheshire to play or write something for the celebration.  We cooked, many times for days.  I think it was the only time I’d take a day off work to get ready. Continue reading

walk out & choir concert

AB3B3B29-E24E-4D55-A30A-A54CD25329EAYesterday, on the month anniversary of the massacre by a 19-year old using a semi-automatic style weapon at Marjory Stoneman Douglas High School, which left 17 dead and 14 injured, students all over the United States walked out of class to protest gun violence and to demand action by their lawmakers.  These clear, young eyes see the NRA’s emasculation of the GOP, the party which controls all three branches of our federal government and 33 state houses across the USA.  They see that the best the GOP president can do is host a roundtable discussion about violent video games after the NRA made him walk back his gun control comments. I’ve heard and read “grown-ups” criticizing students for meddling in issues they do not understand and insinuating that the protesters only wanted to get out of classes, but possibly those “grown-ups” know a very different kind of student than I know.  I applaud the students who organized demonstrations of all sorts yesterday and who intend to demand more from the rest of us to end gun violence with gun control. Continue reading

first drafting and of course, cheer

650E3845-351D-46D9-A4FB-20D4AC733C3BThe cleaners were here this morning.  When they come to clean, I retreat to a coffee shop, indulge in breakfast and latte, and plan a day.  Then, I library-ed, paying a fine before taking out paper books and books on CD.  Two travel books on Australia, another Percy Jackson for Julia, an Annie Lamont and some memoir for me.  Then, home again for my regular round.

The near-daily round was instituted to get me writing daily—Italian practice, fiction and spiritual reading, meditation, gratitude journal.  I give myself credit for house work and Julia related email.  All in warm up for some pretty awful first draft fiction. <Gulp> I accept the awfulness and keep going.  Day after day.  Every so often I look back and find a word, a phrase, once a sentence that could be included in a second draft.  Oh, I have so much ability to produce dreck. Continue reading

social skills

To set the scene.  I am sick and grumpy.  I could write a long description.  I have.  And I’ll keep it to myself.  None of it noteworthy except it is the setting into which Julia’s terrible, awful, horrible day blossomed.

Tuesday morning, I wrote to Julia’s case manager at school:

“Julia has been complaining about lunch all weekend.  Today, she should go to Trills.  I’m not sure if she has been going the last few weeks.  Other than today and Thursday (Peer Partners?), she wants to be able to sit with other kids.  I’m not sure what can be worked out but I promised to ask you about it.  Any ideas?” Continue reading

cheer & finals & loss

Saturday: My second basketball game in as many days.  No, I haven’t gone over to the dark side (excuse me, my basketball-loving Hoosier friends).  Julia is cheering.  Not perfectly by any means although pompoms hide many a sin, cheerleaders stand to one side of the basket and cheer from the side, and most folks are here for the basketball players. She is very happy.  Tonight she doesn’t even have ear plugs in. The gym’s echo is quite pronounced and the buzzer is incredibly loud and annoying.  No complaints from the girl.

I realize that it is me that wants and expects perfection before performance.  Julia and her cheer coach do not.  Julia is out in front of the crowd on her own terms.  Sometimes she perseverates on how she holds her pompoms and she does not stand as still as the other girls. And people do notice.  As we left on Saturday, various people told Julia that she did a great job.  Some of the compliments were accompanied by a knowing look to me.  She is being congratulated for her chutzpah, her sheer and absolute nerve to insist on being herself even in a line up of girls all the rest doing the exact same thing.  If there is pity, I refuse to see it.  This is a hard lesson for me—a lesson in letting her go and letting her be herself.  I would prefer that she show her independence by cutting up her food and sleeping in her own bed every night. I would prefer to let go of reminding her to go to the bathroom and listen and respond to people talking to her.  Instead, she insists on my letting her go in front of crowds with pompoms. Continue reading

of the new year

I’ve spent the entire morning and part of the afternoon taking care of business—overdue thank you notes to friends and the cheer coach (I had to tell her about Julia’s wall climbing which the biweekly cheer workouts are responsible for (Eek! Ending with a preposition!)), emails to find providers for our current respite needs and to teachers to figure out how to best support Julia as she works on her first English research paper, queries about two new projects I’ve been promising myself for a long time and also about an idea to help Julia with independence, paying a few bills, ordering what I think is the perfect birthday present for Julia, and phone calls to change doc appointments and set up another round of house repairs.

Whoa, I am clear today! And very grateful for the clarity. I have been kinda’, sorta’ muddled and overwhelmed recently.  No good reason.  Holidays? Travel? The cold (not a cold but the weather)?  Since we’ve gotten home, I’ve had a slow ‘recovery,’ not from illness but from malaise, some not-quite sadness.  My usual trust that I would get back to a busy daily round eventually was beginning to wane.  Perhaps the muddle was here to stay this time. Continue reading

might as well be dancin’

C31B34D9-4BAA-46A5-A5EC-1A41F0981A6DRinging in a new year in what might be considered the most classic, but for me the least characteristic way—on a crowded dance floor gyrating with a throng of strangers in party hats and noise makers to a band playing the ancient music covered by high school bands in the late 60’s (no complaints about the music. It was very delightful).  Before the parties heated up, Cheshire and I walked around an upper deck in the cool night air.  A few stars were out, we could watch the quiet dark sea and the wake made by our boat. It was my favorite part of the evening, perhaps of the cruise.  Minutes before midnight, we joined the throng dancing.  Twenty seconds before midnight we began counting down as if this was a novel experience. At midnight, music played, people cheered, hugged and kissed, balloons, streamers and confetti fell from 10 floors above. In a minute, we we stood knee deep in balloons and streamers. It was almost strangely satisfying. It was as I had always imagined. Continue reading

cruise day 3 – a day at sea

We embarked on Thursday. Our hotel was less than 1.5 miles from the dock and so we arrived by foot, each of us with back pack and pulling our carry on bag. Once again, Autism on the Seas met us at the first check in point and moved us through lines and crowds. There is something wonderfully familiar and comfortable about this cruise. The ship is not configured in the same way but most of the same elements are there, the mental maps are so much easier.  Julia and I were at ease much sooner and we were able to clue Cheshire in.

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It is great having Cheshire with us. A second person to interact with and boss Julia around, a lovely companion for me to enjoy. Last cruise, julia and I had a wheel chair accessible cabin. We booked late and some of those rooms had been released. Our cabin this time is standard and a lot narrower. We have a window and not a balcony. I miss the ability to be outside immediately and the balcony provides a few extra feet but we manage the tight space well.  I do find myself constantly straightening and putting away out stuff. Clutter happens fast.

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eve of christmas

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Lighting the first night of Chanukah.

A reminder pops up on my laptop from Calendar: Christmas Eve.  Obviously, Apple’s Calendar is not able to look around this house.  Yet.  Something to be grateful for in a small way.

Facebook reminds me of all those past Christmas Eve postings—parts of cards, pictures in NYC with Cheshire and Julia, silly pictures of Cheshire’s friends here to support her through rough times, pictures of Julia in full Hogwarts regalia in Florida at the Wizarding World during our Christmas with the Mahoney’s (without our favorite Mahoney’s), trees and stockings and kind Santas who listened to Julia’s sometimes incoherent rambling wish lists.  One post from December 24, 2010, offers the beginning of what has been seven years of strained celebrations:

Julia and I are bedded down in Brooklyn. We are remaking Christmas. In a few years it will be ours again. Peace and love to my facebook comrades. Hug your partners and parents and friends and kids while they are close.

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