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 →

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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 →

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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.

Continue reading →

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winter break travel: Tampa

Sunrise over water- a bay?- in Tampa. Not an extraordinary feat consider how little day light there is this time of year. A hotel on the water, the convention center, cars and trucks dot the visible highways and a lone kayaker paddles across the bay. Something nicely propitious about the sighting. We are in the tourist center, our driver from last night told us. Continue reading →

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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.

Continue reading →

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catch up

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Beginning of winder holidays 2017!

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.

Continue reading →

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thanksgiving gratitude

img_2359There 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 →

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busting out of room 1112

After 6 hours of cheer practice.
Sitting in the very crowded West library during last period.  I have less than an hour before I need to get Julia when school is over.  Going home will give me about 20 minutes there and I’ve brought what I need to meet her. I’m picking her up today because she gets out at 2:40 and must be back for cheer practice at 4.

I haven’t published for a bit more than a month, I’ve started a few posts and abandoned them. Each had high emotions and descriptions of broken systems.  The landscape and emotions shift too quickly for me to either continue or revise.  It seems like a new story every few days. The promising meeting or email results in a step back instead of two steps forward as planned.

Some highlights of the past month from where I sit today, starting with the positive because I have not been keeping the positive in my head recently: Continue reading →

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“special” ed

Julia was supposed to go to the lunch time choir group yesterday, Monday. This year West High School lengthened their day by 20 minutes and many of the usual after-school groups meet during a lengthened lunch.  (As a new high school family, I don’t know how lunch time clubs and after-school clubs were run in the past.)

Three weeks ago, Julia wanted to go to the lunch time choir and we were told that there was not sufficient special ed staff.  The SEAs (“Special Education Assistant”) eat lunch during the students’ lunch, half at a time, leaving the non-eating half to help the students. There are a significant number of students who need help during lunch.  I got in touch with the choir director and her case manager and all agreed that an SEA could accompany Julia to lunch choir but not stay with her.  I thought this was a good compromise.  I think Julia could do the activity with only support from the teacher/moderator and club members, but she did need help getting to the choir room.

Last week, Julia didn’t get to the club because she needed to buy her lunch.  I suspect that other students who go to clubs also buy their lunches.  No matter, she needed lunch and by the time she got it, no SEA could be spared to walk her to the choir room for club.

Yesterday, Julia brought her lunch so she could be walked right after her class to the choir.  However, her case manager and two SEA were absent for the day and there were no special ed subs.  Julia was told to stay in Room 1112 (a special ed classroom) for lunch without much explanation.  From what I can gather, the lack of subs is business is usual in the special ed department.

Aside: During parent’s night at the high school when parents follow their students’ schedule for an evening, I was in the special ed classroom three times.  Each time, I was the only parent present.

Pondering: What can I do?

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