Tag: Boston

the diner

Nothing like falling into a place. And entire world whose comfort is undeniable.  How long has it been since this has happened to me?

Maybe forever.

I credit today to the slow recovery from Covid.  Both Julia and I tested negative this morning—she probably would have tested negative days ago.  And me too, probably, but I waited.  It didn’t matter to wait.  We were being very careful—masks and going to very few places.  And it was well past our quarantine time.  

But anyway, this morning I woke up, still coughing but otherwise restless.  It was and is a dreary almost-spring day.  45 degrees, rain with shades of gray above.  My upstairs neighbor had planted daffodils around the house that are waving their yellow heads and the Covid fog, which I hadn’t realized I had, is beginning to clear. (I guess it could be late winter foggy head or old lady fogginess but I’m blaming Covid today.) 

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unpacking

“It’s Wisconsin,” Julia said Friday morning as she stepped outside.  As if Wisconsin was a season or a a weather description like sunny or cloudy.  It was cold yesterday and overnight and this morning it is colder—cold enough to run a bit of water in the kitchen sink to make sure the pipes don’t freeze.

But it is hardly Wisconsin.

And I check myself to see if I miss those brilliant sunny and frigid days in Madison.

Yes, somewhat.  What I miss is my people, my community, my chalice circle, my Quest group, Julia’s teachers and therapists and some very good friends.  

I do not miss the cold.  I could feel nostalgic for every one of those people if temperatures there never once dipped below freezing.

We are a week in the new house.  There are fewer piles of boxes in the corners, there is a somewhat comfortable arrangement of furniture in the living room, there are some books on shelves.

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my new year

 

Frank Bowlings’ Julia at the MFA

This is a time of deep diving into chaos and it is not over yet.  

We are leaving the blue victorian house that has held us safe and warm since we left Madison three and a half years ago.  It has never been the perfect space but it has served us well through lock down and Covid, through the rough months without services for Julia and through her toughest transitions—the last of which was a bit more than a week ago when she turned 22 and aged out of school-based services.  

The end of her transition services program, Community Connections or “CC”, was marked by a pizza party with most of the students and faculty and staff of CC.  When her Inclusion Facilitator and I first talked about her party, we thought that something small with a few students would fit her best.  Something like going out to get nails done, Asian noodles and a bubble tea with a few people.  But Julia knew what she wanted and she wanted a big party with cake she made herself.  She invited me and VNM but when we joined the party and I asked if we could sit with her, she preferred sitting with the teachers and aides who have been part of this experience.  It was great to see her chatting and holding court. It was great to see her happy.

She misses everyone at CC and especially those staff members who she spent time with.  I think she is texting with at least one of them and she wants to go back to visit. Connection has always been so important to Julia and it was good to see that she had made some in this program after those last years of high school which were so isolating and difficult.

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baby shower

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.

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winter profile (an update)

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.

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risky behavior

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.  

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FanCon Boston 2021

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.

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staycationing

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. 

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new year baby

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!

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year of the rat

Unknown-1Happy Year of the Rat!

or

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 →

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