MAY ALL THAT HAS BEEN REDUCED TO NOISE IN YOU BECOME MUSIC AGAIN

I have six drafts queued up in this blog, half-finished. However, last night I mucked around with WordPress (and I mean really “mucking”, like a wet sandbox — the more you want to use a free plan in WordPress, the harder they make it, and before you know it you’ve changed a whole lot of things, but you’ve not moved forward at all) to make the blog for which Place of Articulation has been the fumbling, groping predecessor.

Because the light is coming in. Tucker and I feel the need for a blog of our own, to address a growing number of independent projects and experiences. (And yeah, I’ll have to pay at least one upgrade from free, or else they just make it a punishment to even try.)

Some of our key topics have run their course. Autism is a constant; autistic abuse is going to be touched on more than it has been, and yes, some people should feel uncomfortable to hear that. We have no current reasons to write about dementia; to think, when we had started that blog, I had no idea when my dad would die. We wrote through so many experiences. But if these blogs are to help us process our own experiences through writing (and they are), new topics have taken their place. Schizophrenia is one. My Chiari malformation is proving to be a pretty interesting, and woozy-making, subject — but one that I’m a little pressed for time to do much about when it comes to my own brain. (My brain is feeling a little pressed too! Ha!)

Some key aspects of our identity as creative partners are evolving. What processional arts has come to mean to me has spread like a… hmmm. Let’s not say “plague”. (Let’s also not say “A very loose hummus”. That almost sounds worse.) It’s just that it’s EVERYWHERE, and after years of joking about when Krampus would finally jump the shark, I find I don’t care anymore and am just tired of Krampus and having to be bothered to do anything extra at Christmastime. I’m at the tail end of having children who believe in Santa (if they even still do; they’re probably lying just to save my feelings) and I want to be with my kids at Christmastime, and that is enough. There are a million things to do at that time of year, and we’ve been missing them for long enough. We do have seeds of ideas for processional events with individuals and with local organizations, and foil and tape are out and lying in bits about the house, but — now? in 2018? Guys. My brain is falling backward onto my spinal cord. It hurts.  I need a rest.

Having said that “I need a rest,” I want to MOOOOOOVE. We talking about “going” all the time — all of us — and where we want to Go. None of it is super-soon, but it is indeed coming. Wanting to do outreach in other communities that don’t have access to the things we’ve come by so easily — it’s ticking louder in the biological creative clock. Philadelphia has some amazing organizations with amazing staff, and conversations are starting to happen. We can bide our time with those, and the sound of Tuck ripping tape and foil last night and the night before reminded me that We are still here… with the birthright to be entirely new, and entirely mobile, ready to be envoked. Philly is not forever for us; that much, we know.

On a deep, core-of-the-earth level, we are changing as a family. And so, my WordPress fiddling has allowed that whenever this blog is up for renewal this year, it will not renew; I have exported its contents for my own posterity, and can watch it disintegrate into space.

The URL for a new blog (and probably a post or two) will appear here shortly. Still plenty of autism stuff, and maybe I won’t be such a stickler about not putting too many autism or PTSD links on the page, because people seem to appreciate it when I do. Those links, perhaps, belong more on a page for such a blog as this next one will be, more than on my personal page, or on Tuck’s, even if it’s us putting them there. (Maybe that’s a good place to put some processional arts and puppetry and costume stuff too, although our “folkfuturism” dumping ground on Facebook is serving is well for that. Still, sometimes it’s worth it to double up.)

There are new things to talk about, people. New Things Are Coming. They’re not coming very quickly — we still look very much like we are in hibernation mode. It’s not all a ruse; I’m definitely tired, and in pain, a lot. But I also don’t think I’ve ever enjoyed time at home with my kids so much in my life. You can watch real movies with them now. I hear about people weeping when their babies start to disappear and turn into these Real People, but honestly, I’m VERY into the Real People, and they are very into me. More than they used to be, even.

But keep watching this space, for signs of the New Space. Or, hell, don’t. Ignore us for two or three years and see if you can even recognize us after that. Do whatever makes it fun for you.

And dance this mess around. Look at them. Look at them SMILE at each other. They are perfection. They are a rhythm section, and that says it all. I didn’t just have a son and daughter — I had a rhythm section. Look at them. Listen to them. Smiling at each other and playing — a moment I’ve never had with a sibling, and I don’t regret it for a second, because I love what I have, and I have no need to look back, when there is so much more ahead than I believed there was a year ago.  And I can only feel extra joy for those who have earned a place in making this new leg of the journey with us. Thank  you for staying.

MAY ALL THAT HAS BEEN REDUCED TO NOISE IN YOU BECOME MUSIC AGAIN

WHAT’S GOING ON

Facebook keeps telling me I haven’t updated here recently enough.

This will just have to do, because this was our day, not to mention a portion of pretty much every day of the last few months.

This wasn’t just Claude’s best show, it was definitely a HUGE step forward for Béla. He will NEVER say the words “in cars” again without then adding those two notes (da-nat). As it should be.

so that’s what’s up.

 

WHAT’S GOING ON

Strength Source Project at 48

I got to spend my birthday morning taking part in the Strength Source Project with artist and photographer (and Parade of Spirits mother) Carrie Biegler. Follow the link above to read many profiles of many strong woman, and beautiful portraits. I have posted Carrie’s photo of me, and my text for the project, below.

“I was raised by an emotionally and physically abusive father and a mother who did nothing to stop him. Although I tried to keep my father in my life through adulthood — he also had Asperger’s Syndrome, and it seemed clearer the older he got, that his elder care was going to be challenging and I felt he would need my help — it became impossible to manage or tolerate his behavior. When my husband and I adopted our first child, we decided that my father would no longer be a part of our, or our children’s, lives.

Because I had always counted strongly on people who were not my blood relations — and because the people who were my blood relations had failed me — I spent a lot of time thinking about what families were, and where the boundaries for families began and ended. After adopting our second child, I understood that our family was “complete”, but I also started to question this idea of “completion”: why was this the goal? Why was everyone in a rush to get there? Was I ever going to love anyone new again, now that I had these babies? Why were households set up like bunkers, where two adults — and the children that they had, in the majority of cases, created with their own bodies — considered “family units”? 

Shortly after turning 40, I began to envision myself — not intentionally, but just out of the blue — as being at the very beginning of coming into my full strength as a human. I had no idea what it was that I thought I was going to do, and had no big plan, but just had a picture of myself in my head, and knew, that when I hit the height of my powers, I would have mostly grey hair. I just felt this sense of acceleration. 

Not a single thing that I have accomplished since 2011 and take pride in is anything that, if you had told me about it in 2008, would have been something I was prepared to do. I co-founded and developed a yearly festival and parade in Philadelphia (originally called Krampuslauf Philadelphia, now Parade of Spirits, Liberty Lands) that is now in its seventh yearly run. I was asked to speak at Oxford University about it last year. In 2013, we invited a fifth person to join our family and household. He is now 24, is studying neuroscience at Drexel’s medical school and will be an honoree of Drexel’s “40 Under 40” award this year. He, like my father, has Asperger’s Syndrome. My father died of dementia in 2016. I began homeschooling my children six weeks later. Earlier this year, with some of the money from my father’s estate, I created a scholarship fund for School of Rock Philadelphia, where my son and daughter are students. 

I have begun to redefine community and family in my own life, but I doubt I’m anywhere close to stopping. And my grey is coming in so much slower than I would have expected by 48! Working without a plan — giving what I have to give, freely, keeping myself open to saying YES, and embracing a love of folklore and nighttime parades that I didn’t know I ever had, have changed the last seven years of my life dramatically. I’m going to continue to trust whatever has brought me this far to continue to cut away the dead weight in my life and allow me to continue helping to create paths for others.”

48thbirthday_strengthsourceproject_carriebiegler
image by Carrie Biegler for Strength Source Project, 2018

 

Strength Source Project at 48

SOMETIMES IT’S JUST FUN HERE

Like when it’s Thanksgiving Day and we’ve completely done away with any convention and embraced the Exactly What We Feel Like and are eating tons of Trader Joe’s h’ors d’ouvres while watching the Macy’s Parade on TV and waiting for the dog show to start and knowing there will be turkey later but everyone will have eaten so many side dishes including Tucker’s collards and yeast gravy, and Béla’s giant olive tray, that hardly any turkey will be touched at all.

Many MST3K episodes will be watched.

For a little video that straddles the holiday equator between Halloween and Christmas, here are Béla and Claudia — and even Tucker (in a Frank Zappa halloween costume in the graveyard with the trap goth band…) in South SillyCAM Episode Four.

SOMETIMES IT’S JUST FUN HERE

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.

MEDSCHOOL_labcoat

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.

medschool_claudecomments

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.

kevinandtucker

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.

capstone

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.

 

IMG_7596

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