THIS IS THE DAY OF THE EXPANDING MAN

I woke up on September 3rd to the news of Walter Becker’s death. Steely Dan had been a huge part of my childhood, and of my father’s identity. As a kid, riding in the car with my dad, I was ordered to listen to the lyrics to Steely Dan songs as though they were important lectures or sermons.I can identify the single note in “Do It Again” during which Donald Fagen became visible, entering the stage, the first time we saw Steely Dan live, and can remember my dad whooping with admiration.

It had been a strange coincidence when Leon Russell died so shortly after my dad did, but that death was also instrumental in processing my father’s death. Leon’s death had guided me through the actual sadness and loss of grieving that my father’s death had not provided. I didn’t need Walter Becker’s death for anything; it was an unacceptable loss.

It took me a few hours to realize we had, intentionally, decided NOT to go to the last concert Steely Dan had had here (which was with Elvis Costello. I really can’t believe we missed this.) That was it; I had blown it; I had made a Steely Dan fan out of Tucker and we were never going to see them live. Tucker said that having missed that concert was pretty much the first thing he had thought of when he heard about Becker’s death. I felt awful.

The death of Grant Hart was a sucker punch and the loss of the voice that I had clung to almost exclusively in 1990, the year that my parents had separated. I was able to spend that day with musichead friends, to whom I did not have to explain my disbelief and sense of loss, but September 2017 was turning into a really long month. And we were well into it before I remembered that the actual first anniversary of my dad’s death was also on the calendar.

Last year, we had had our pet rat, Pocket, put to sleep on September 13th, because we were sure he was going to die soon and we were afraid he would do it on Béla’s birthday. But I had not equated the anniversary of my dad’s death with being “a week after Béla’s birthday”, because on Béla’s birthday last year, we still had no idea my father was so close to death. Once I recognized that the date was coming, I started to feel it. In the economical euphemism used by Tuck’s twin years ago, I picked up a “speed wobble”, my coping mechanisms steadily breaking away.

And somehow, Béla’s birthday on Friday was probably one of the most enjoyable kid birthdays I have experienced between the two of my children. The pressure I’d felt to be “okay” for his birthday was completely removed the night before by a friend who reassured me that no matter what I did or didn’t feel up to, the kid would get over it and I still needed to take care of myself. This was enormously helpful. We got up late (we often get up pretty late on homeschool days), and decided that even though Tuck and Ben were out to work and school, Béla would open his “big” gift right then: it was a red Yamaha keytar, and he loved it. We played with a new-to-us modelling compound called Sugru. We listened to a lot of amateur keytar-playing. Ben picked up Claudia so she could follow through on a midday shopping trip for her brother, coming home with something with which he was delighted, and none of us would have known to get him. Ben took the kids plus one good friend to Dave and Buster’s for about three hours in the early evening — something that would have been misery for Tucker and for me, and we weren’t missed. We had ice cream cake at home that night, no candles, no singing — Béla-style. (And exactly like my dad.) It was a good day.

We have, very slowly, since the beginning of the summer, been making changes to the house. Two bedrooms are switching owners, two multipurpose rooms are switching purposes. New beds, hopefully good enough to make it to the teen years, have been ordered, and in Claudia’s case, assembled. I have been able to fund much of this with the money from the sale of my father’s home in Bucks County. Doing brain transplants in the rooms of your own house can be harder than moving into a new house altogether. There are no empty rooms. It’s like a sliding-tile puzzle. And it has been this way for months, with various kids sleeping on various floors waiting for the paint fumes to subside, insisting on having the soundtrack to Hamilton playing all night long. Everyone and everything has felt a little displaced.

But in the last month, I’ve been socializing more than I have in a year — since my dad died, since we began homeschooling — and for that I am really grateful. I am still far from up to speed on self-care but I’m working on it, and not punishing myself too much for not doing the best job. The kids are doing great educationally and having a lot of fun, and have made really nice new friends. Grad school for Tucker has been a huge transition and I miss him being at main campus, and miss his faculty and advisors. He says that the med school has a “Drexel vibe” and is happy.

On September 3rd, the day that Walter Becker died, Ben and I had driven the kids to Germantown for what is, this fall, a Sunday full of homeschool activities. Because I felt such a seismic shift due to Becker’s death,  I took two direct actions towards life changes for myself that day. One is likely to be the most significant long-term change for our family since Tucker became a part of our household. It continues to unfold with the same sense of slightly-out-of-control Fate that Tuck’s arrival did, and I’m just riding it. The other one, I have to get to work on myself. It is the first anniversary of my father’s death, and that means it is basically Halloween season, which means it’s also pre-Every Favorite Holiday season, and Parade season, and that gives me a lot to look forward to.

THIS IS THE DAY OF THE EXPANDING MAN

LET’S SCIENCE

Students in the College of Medicine had to, during orientation, have their portraits taken in lab coats. While most used a lab coat from the school as a loaner for the picture, Tucker brought a lab coat with him; my father’s.

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I did not expect to love the picture so much. And I really do. It does exactly what pictures are supposed to do — it documents the growth and progress that have actually etched themselves into his face.

As far as I know, it’s literally just an ID photo. They had changed the date of his session on him at the last minute, and he had to rush home and shave; circumstances for a good photo were not prime.

But he just looks so ready.

I texted the image to Claudia today after Tuck had sent it to me; her commentary is as good as the picture itself.

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I’m sure my dad would just be happy his lab coat was getting use by someone who wanted to be in it.

 

LET’S SCIENCE

GRADUATE/STUDENT

I expected myself to have come up with something to say by now about the fact that Tucker graduated from college in June, but so much happened almost immediately following it (a bad concussion for Béla, a week in Woodstock, NY for everybody), that I never got to it.

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Tucker graduated with Honors with Distinction, and was the only member of his elite graduating class to graduate Summa Cum Laude.

We are particularly grateful to Tuck’s undergraduate advisor in the Custom-Designed Major Program of the Pennoni Honors College, Kevin Egan. That FERPA waiver wasn’t for nothing, and between the applications to graduate programs and the last term at Drexel, not to mention his Senior Capstone Project some of those classic ASD executive function shortcomings were kicking in for Tuck, and Ben was checking in with his faculty mentors, with some very specific checklists, pretty regularly. As you can see Kevin’s big smile in the photo above, so can you recognize it in silhouetted profile at Tuck’s Capstone presentation. His support is one of the many things we will miss about Drexel’s undergraduate program. We could not be happier that Tucker is staying within the Drexel system; this is a place where he is understood and valued.

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Tuck’s graduation events were spread out over two days and he kept things — from his guests, to what graduation-related decor I was allowed to put in our front window, to what he wanted to do after the ceremony (which was: get a shrimp cocktail tray, like one would get for a party, but not go to or have a party, and just eat the shrimp at home) — the way he wanted them.

 

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More valuable than the medals or accolades is the fact that in the month since he graduated, Tuck’s had no dark circles under his eyes, and has had literally glowing skin — he is less stressed, and has had more free time, than in the last four years. In Woodstock he was able to spend hours upon hours doing jigsaw and logic puzzles.

He begins in the neurorobotics lab that he will be starting his first rotation in for grad school this week. I will miss having him at home so much. We all will.

We tried to take his ID photos for grad school today.

We will try that again tomorrow.

GRADUATE/STUDENT

WE INTERRUPT THE METICULOUS POSTMORTEMS OF OUR CHALLENGING PASTS WITH NEWS OF INCREDIBLY BRIGHT FUTURES

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Tucker has been accepted to the MS Neuroscience program at Drexel Med (DUCOM). He will working in a neuro-robotics lab.

His course work counts directly towards his PhD.

He’s relieved and happy. We’re relieved and happy. This is special and it fits him perfectly.

We have been waiting for this day since September. tuck took his GRE on the day before my dad died. We are literally breathing for the first time since September 21. This was the final hurdle we were waiting out. I don’t care if the afterglow only lasts tonight. It’s definitely on.

We will be marching in the March for Science this Saturday with a lot of pride.


There’s a lot to write about how executive functioning deficits — and our own preoccupation with my dad’s death, his estate, and the death last week of my friend Matthew, all contributed to us not watching as carefully as we could as Tuck made decisions about where he would apply, and that could have gone pretty badly for everybody. We caught it, and it didn’t. More on that at another time.

We already had milkshakes waiting for the kids when they came in from the playground, but of course Claudia was ready to one-up Tucker… she’d found a FIFTY dollar bill.

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Congrats…. to TUCKER.

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WE INTERRUPT THE METICULOUS POSTMORTEMS OF OUR CHALLENGING PASTS WITH NEWS OF INCREDIBLY BRIGHT FUTURES

ACROSS THE POND

We have certainly tried, with at least every few posts, to have this site be about more than rare-steak, bloody-juicy stories of family dysfunction from our haunted pasts. We’ve hoped to make use creatively of the challenging pieces of magnetic poetry pieces we’ve been given (autism, dementia, PTSD, estrangement, death) and get them linked up seamlessly with the ones we love (parades, puppets, props, Tarot, “bedroom culture”, masks, and things that light up and glow).

We have spent two years groping, slothlike, towards data-gathering on the topic of processional arts and its participants on the autism spectrum. Sounds academic, put that way, but really, it was just that Tucker had had big shutdown/small meltdown at both of his first Krampuslauf Philadelphia/Parade of Spirits nights, in 2013 and 2014, and when we had figured out why, we started to think more about the people we didn’t know yet, and what their experiences were. Parade of Spirits is secular and “inclusive” — but it can only be inclusive of the people who show up for it. Right?

We thought maybe we could try to do even better.

We made a SurveyMonkey survey, trying to get data from other people on the spectrum, to find out more about how they felt about processions and parades, and whether making things that were used to make the parade beautiful, or being at the parade physically, were of similar value to them. Or at all equitable in attainability.

In 2015, we had a very polite and meaningless meeting with folks from the Autism Task Force at City Hall (Philadelphia is the first city in America to have an autism task force at the municipal level), who had seemed “receptive” to our admittedly loose plans to try to get in touch with people in the local autism community about interests and challenges in processional arts, but, when asked, the folks at City Hall in Philly would not share our survey on social media, since it did not have anything to do with any projects they themselves were working on.

Not even a little cut and paste? Okay then, Task Force. We continued to find ways to direct people to the survey when we could, and although the sample was not large, the responses had marked similarities. We continued to have Krampuslauf Philadelphia, which, by 2016, had officially been re-named Parade of Spirits, Liberty Lands, and we continued to talk about sensory issues and processional arts where and when we could.

And then, in the tiled-sliding-puzzle world of Facebook Groups, where you can suddenly find yourself next to anybody, I found myself in conversing with an autistic woman in Scotland. I told her about Parade of Spirits. She told me about herself. “My ‘special interest’ is what is popularly known as the Green Man – foliate head,” she told me on Facebook Messenger. “I hold both a Scottish Gazeteer and a bibliography on the subject, acting as volunteer curator for a private research collection on the subject.” But, when it came to attending events where the Green Man might be portrayed “live” — such as Edinburgh’s amazing Beltane Fire Festival — there were logistical bottlenecks. “If it was just the people +sensory , then because it’s my special interest I’d manage and take the hit of being in bed for a fortnight afterwards! But there is an AUDIENCE! and a large group of non-involved persons would be….. urgh!”

I was having a conversation I had wanted to have for years. I had liked the idea of it being with someone in Philadelphia, because we could have worked together on something in Philadelphia, but it hadn’t happened that way, and this was just as interesting.

Within a few months, I had found another woman to talk to about the same subject. She was also in Scotland.

We have had some skill-sharing ties to the Beltane Fire Festival folks in Edinburgh for years, and in fact at Liberty Lands have our own willow “garden” (one of twenty plants made it, but it’s prolific), named after our buddy Zander who set us up from across the globe, to learn about the use of willow withies in creating lanterns and puppets. I joked to Ben and Tucker that if we were going to hit dead ends in Philly, looking to be part of a conversation about providing greater participation to people on the spectrum who liked and wanted to have more of a hand in processional arts, that I’d be happy to just go to Scotland to have the conversation.

So close to right.

 

Shortly after Parade of Spirits this year, I saw that a conference called “Winter Festivals and Traditions” was asking for short abstracts from prospective presenters. It was easier for me to write the abstract than to not write it, and so I submitted it within hours of seeing it.

I did not think about getting chosen to present at the conference, mostly because I had other things to think about. So I was pretty surprised when I was chosen. The conference was at Oxford University. It was a little more than a month away, I explained to Ben, as contractors knocked on the door, setting off yelping dogs, and under-dressed children hurling themselves down the stairs as they do when anyone enters the house.

“Want to go to England?” we asked them, while showing the friendly pair of Ukranian contractors where we wanted to knock out walls to extend Béla’s bedroom. Béla has the smallest bedroom in the house, and is the only person with a full drum kit in their room, and  you literally cannot step into Béla’s room at night to check on his sleeping without hitting a crash cymbal.

In my abstract, I did not just write about my passion for making processional arts more accessible for people on the autism spectrum. But it’s in there. I enjoy public speaking, so I’m not worrying about my fifteen minutes, but very excited to find out about what else is going to be presented and who we are going to meet. The whole family is going. We are only going for a few days and not going to travel far from Oxford — it seems there is plenty to do there (I understand that it’s a destination for Harry Potter fans, which none of us is). We are thinking of going to Stonehenge (and if I know Tucker, he will want to be there at sunrise. But I think it is equally important that the kids see This Is Spinal Tap in preparation.)

I’m excited. I believe my big ol’ Leon Russell tattoo should be well-healed by then and I think I will get a skirt to show it off. I don’t buy clothes much, so if I buy an outfit for this conference it’s going to do double duty as The Thing I Wear To Tucker’s Graduation. (The stockings I wore at his high school commencement are still lying in my top drawer, waiting for “one more wear” before I wash them.) And speaking of Tucker’s graduation, he paid for his final term today. His degree is paid for. No loan to take out this year.  It is now all just right around the corner.

As we occasionally get to say here, sometimes things are just fine.

 

ACROSS THE POND