Yesterday, 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
The 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
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
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
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
Ringing 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
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.
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.
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.
The wind has been howling for 27 hours sweeping away the last unseasonable warmth of the year. The sun is brighter today than midsummer and shinning in unusual windows at unexpected angles. The barometric pressure is . . . all over the place(?). Snow by the end of the week.
I usually blame early winter decorations and Christmas music on Julia’s desires. This year I take some credit. Daily news is an assault on the democratic principle I believe in. Not just democracy–greed and cruelty are on the rise, spearheaded by a Republican party that has been highjacked by the the worst of humanity. The lyrics from Cool, Cool Considerate Men from the musical 1776, repeat in my head over and over through the ever increasing disgusting trump news cycles:
Well, perhaps [there are not enough men of property in America to dictate policy]. But don’t forget that most men with nothing would rather protect the possibility of becoming rich than face the reality of being poor.
And that is why they will follow us!
To the right, ever to the right
Never to the left, forever to the right.
There is snow on the roof this morning. Just the smallest of sprinklings which will disappear in the morning rain. It is almost 8 a.m. and Julia is still asleep. She loves the first snow and I puzzle whether to wake her. But she so infrequently sleeps this long and we were out late last night. I let her sleep.
Such a week this has been!
Julia has made it to school on time for the last 7 days. On time! On one hand, such an mundane victory, but I feel like a Plantagenet claiming victory during the Hundred Years’ War. There is back story of course. While researching the reason that Julia was not getting picked up on time even according to Badger Bus’ schedule at 7:56, it was discovered that the student picked up before Julia hadn’t been to school since early September and that the driver was waiting for someone who is no longer going to school. So, without that stop and without waiting for the phantom student, Julia is now picked up at 7:48. My perfect world had her picked up at 7:45; I can concede those 3 minutes. She is now dropped off at a different door and she does not have to wait for an SEA to escort her into the building. She can run into the building, get to her locker and get to biology on time. And she can do it without help although special ed is not willing to let her speed through the halls alone yet. I expect she will be doing it alone soon. Continue reading