Finally today, I have caught my breath. From the long holiday weekend and the catch up week that followed. I still have an overdue phone call to my advocate at Healthcare For All and another call to MassHealth. I’m saving that which I know will be frustrating until Monday.
It was a good weekend.
Justin’s mother and I threw a baby shower for our children and their impending baby boy. It was a bigger shower than it would have been had there been had there been the planned-for wedding. We invited more people and people from further away than we might have. Still, there were those from too far away who were missing.
Still, it was a good party.
Last summer I wrote a status report about Julia. It was rather grim but I needed to get it all down in order to understand where I thought Julia was, and to help me to begin to wonder in some sort of a systemic way, what to do next, where she was going, what I should be striving for, fighting for. And what the hell was the goal!
The big question that was and remains: What will happen when Julia is finished with Community Connections (“CC”) next January on her 22nd birthday. [In Massachusetts, students with disabilities can stay in the public school system until their 22nd birthday in compliance with the federal IDEA. After high school, students can enter a transition program and in Newton, we have Community Connections. The purpose of the program is to teach independent living skills and job skills. Students can then transition into employment or into the adult services programs run by the state.] While services for students with disabilities is guaranteed until the age of 22; adults with disabilities merely qualify for services. Depending on the state, the availability of funds and the willingness of the powers that be, students may or may not get services. Even living in Wisconsin and Massachusetts, where there is decent to good willingness to provide services, it is always necessary to advocate for services.
For an adult with disabilities nothing is guaranteed. And all services are so much more dependent upon money and the whim of the legislature. So, strong advocacy is only more important.
For Julia’s birthday, we were ultra careful. No eating out, no movie theater, no concert, no activities where we would be with many people for too long a time in close quarters. Sometime during last week, possibly in the days after the cello break, I grew very weary of the ultra careful life.
And so, on Saturday, Julia, Cheshire, Justin and I went to a Mexican restaurant for dinner. It was delicious and as Cheshire commented, it was food that would have made awful take out. Julia had asked earlier in the day if she could have an alcoholic drink with dinner. She has never before asked for such a thing, didn’t even ask about it for her birthday, but she is 21 and I would rather have her experiment with us than on her own. And considering that she does not go anywhere on her own right now, it would be some undisclosed time in the distant future before she could order her first drink.
Julia has waited for two years to go to a big “Con.” We could have gone in 2019 but it was right after we moved and I couldn’t manage it. That Christmas, she wanted costumes and wigs to get ready for 2020. But like everything else the 2020 FanCon was cancelled. The 2021 FanCon was moved back and last weekend it happened. I think it was not as big as it has been; however, Julia had a wonderful time. We had 3-day tickets and she and I went each day. Julia’s wonderful therapist accompanied us on Friday evening, and Cheshire was with us on Saturday and Sunday. Masking made it a bit weird. I mean, in a superhero costume with wig and mask, I could have walked right past anyone!
Julia went dressed on Friday and Saturday as a female Deku cheer leader for UA, the Japanese high school that develops heros. In the animation, Deku is male; however, lots of young women like to become a female version of him. On Sunday, she dressed as a blue haired student at UA which may be her own character.
So, a few pictures.
Friday was the last day of Camp Echo Bridge. Julia has only been at this city day camp for two weeks and I think it has been the best part of her summer. It is an genuinely inclusive experience for her. A very healthy mix of typical and kids with disabilities in the younger groups. Julia’s group—the tigers, clearly a name that was made up by some of the boys—was young people 14+ with disabilities; however, it is a smallish camp and the entire camp does some things together. The staff is careful and caring but most of all enthusiastic.
One glitch: One swim day Julia got bored sitting in the grass reading—she didn’t want to go into the water—and she decided to walk from the lake to the school where the camp meets. She didn’t tell anyone she was doing it and when counselors realized she wasn’t there, I hear there was 10 minutes of panic. I can count on one hand, this time included, the times Julia has wandered off from anything. Staff handled it all well and low keyed. Julia apologized and they asked her not to do it again. I think she was also scared when she didn’t really know how to get back to the school.
On Friday, in the sweltering humid, sunny heat, there was a camp show. Each group did something like a skit (or told jokes) and danced to a pop song. No pressure to perform. Julia was willing to be “on stage” with her group but not willing to stand to dance. And so, she sat while others danced. Later, when the whole camp was “on stage”—two poles with a sheet stretched between them on part of the paved school yard—she did dance. And she loved it.
Happy Birthday to my baby girl who was bald for a long time, a squirmy worm who preferred to snuggly to the stroller, the baby who didn’t sleep that first year and had a smile and a laugh to melt her groggy parents’ hearts.
This year has been full of so much joy and so much ambiguity. Through everything you are still a wonder. All grace and ease. Your new year holds new challenges and I am so happy to be close enough to have a front row seat. With face masks and social distancing, of course.
You are the apple that makes the tree look pretty darn good. Happy, happy new year!
Happy Year of the Rat!
恭贺新禧 (gōng hè xīn xǐ) Literal translation: respectful congratulations on the New Year.
Yesterday, after cello lesson Julia and I went to The Dumpling Palace in China town for lunch and celebration. The restaurant was noisy, tables too close together, everyone was either leaning very close together to be heard talking or speaking loudly. We were asked to sit at a round table with two other small parties. The wait staff hurried from table to kitchen and back to tables. The arrival of dishes was announced and diners shouted to claim what was theirs. Julia had beef stew noodle soup, I had hot and sour soup, and we shared beef and crab juicy dumplings. Ours was a very small order for two compared to our tables mates but it filled us up. There was no encouragement to rush through the meal and the tea pot was replaced more than once. As we left, waiters wishes us a Happy New Year and when we returned the wishes, there were smiles. Continue reading
It is 6:40 am and completely dark outside. Oh, this winter cocoon time. I can still be surprised by its intensity as it comes to take a huge bite out of my desire for complacency. It is not as cold outside as it usually is this time of year in Madison, although my Madison peeps are posting hiking and bike riding pictures. Yesterday in Newton, a storm gifted us damp, chilly rain, hail, thunder and lightening. We ventured out for food shopping, and that only because it was necessary.
I started writing in bed and moved to my leather writing chair in the dining room. I move about the house in the dark, a habit from when I shared a bedroom and did not want to disturb my sleeping mate. I pull on my heavy pj pants and grab the shawl from Madison friends–blues and purples and memories. Tangible memories from friends punctuate my days—a Madison dish towel, knitted dish clothes, a bag of very fine cocoa mix, even the reusable bags I carry my groceries in. In the lonely and trying moments of the last six months, these things have bought solace. Continue reading
Boxing Day. Julia and I say ‘Happy Boxing Day’ to each other without any idea of what it means. So, I looked it up—It isn’t the day people make bonfires of the boxes that their Christmas presents came in. Neither is it the day to return all the boxes containing ill-fitting or ill-styled gifts. Those were pretty lame guesses but the best we could come up with. Google revealed (with some disagreement) that Boxing Day was British, which we knew, and traditionally a day off for servants. Servants received a ‘Christmas Box’ from the ‘master’ and then were allowed to go home to give the boxes to their families. Umm, but that’s not what happened on Downton Abbey, my British manor house reference point. Having no servants to gift with boxes, we will read, write and draw, then go to the movies. I miss friends who host game playing parties on this day. Maybe next year. Continue reading
Labor Day Weekend and we were out and about playing tourists for the last few days before school. There is a good deal of anxiety but keeping busy helps. Besides touring, we hang Julia’s anime posters and did some decorating in her bedroom. Fingers crossed for Tuesday morning.
A visit to Old Sturbridge Village about 45 minutes south of us. We happened to arrive on Free Friday which made the visit all the more sweet. Visiting 1830 and talking to various craftsmen was the highlight of the day. It was a simpler time of live but even a casual visit showed how few opportunities for women there were. The Seneca Falls Convention was still 18 years away. Continue reading