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

amber dorko stopper

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

amber dorko stopper

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

5 Years

Tucker J. Collins

I did not tend to project into the future when I was younger. Life imposed changes from different directions that I could not predict so I didn’t invest time trying to picture what I might like the future to be like. I was very much focused on the present. When Amber, Ben, Claudia and Bela brought me back to Philly from my first year of college I did not envision that just a few years later I would be an integral part of their family.

Climbing into the rental van, greeted by Claudia’s “I love you, Tucker”, I could not have imagined that within months I would be present for her first day of kindergarten and removing her first loose tooth.

Sitting in the Korean restaurant before leaving DC, I would not have guessed that soon I would learn from Amber & Ben to prepare the Korean noodle dish japchae, at a time when I had little cooking experience. Or that I would be providing instruction on this dish to Bela, along with other recipes that I have used over these years, now that he too is showing an interest in cooking.

As I read the D’Aulaire’s Book of Greek Myths to Claudia & Bela that summer, I would not have guessed that in time she would have followed in my hellenophilic footsteps. And while those myths at first seem to be just fantastic tales of men & women, terrible beasts and the power of the gods, that she would be the person who’d one day appreciate the nuance of the hero’s struggle between right & wrong, and the grayness of good & evil.

As I showed Bela my Rubik’s cube the first time, I could not have known that this past week I would help keep him distracted in the CHOP emergency room so they could do diagnostic blood work. And when I showed the kids the world of Skyrim that I had only ever wandered alone, I would not have known that I could one day be the creator of a D&D fantasy world to wander with them.

I had known the four of them for about 2 years already at the time they came to get me, but I did not know how much deeper those relationships – and my friendship with Amber in particular – would grow. That she would be someone with whom I would be able to share my interests and passions. Learning from her to knit that summer, I knew not that this would be the beginning of a creative partnership that I had not ever had with anyone. That our friendship would be a source of empowerment that would help me to grow personally, or that I would be empowered to improve the quality of my relationships with biological family, long before they each revealed the depth of their toxic attitudes and commitment to stagnation.

When gifted with a smoky quartz early that summer I knew not that it would be the first thing I reached for in a moment I was worried about Amber’s health, nor the extent to which 5 years time would show me how far a person can push to survive or to fight for her children and family. I already recognized her as a rock before then, and time has only shown me further that no one else I have ever met comes close to either her strength or her gift of insight.

In these 5 years I have been able to watch these two kids develop and grow and develop as people, with increasingly more defined interests and passions of their own, and learning myself how to fill the strange role that entering their family at 19 created. I ahve been blessed to be part of this process, and especially to have been alongside someone as amazing, engaged, and insightful a parent as Amber is. I marvel at her abilities as a mother for them, and am grateful to have her as a friend.

Choosing this family, and being chosen by this family, was the best decision I could have made. I would not have guessed all the good times and hard times we would have, but I am thankful all the same that they came to get me five years ago. I love this family, and I need not know the whole future before us, but I know who I want to step out into that future with each day, and I know where my home is come the night.

So, as I tend to do, I wish a happy gotcha day to the rest of my family too, and to wish a happy mother’s day to the best mother I know.

gotcha day 2018

5 Years

Revelations in Role-play of an Autistic, First-time D&D Dungeon Master

Tucker J. CollinsLeave a comment

Around the end of November 2017, I offered to be the Dungeon Master for a Dungeons & Dragons group comprised of local and homeschooled children. While I had never played D&D before, I had long been interested in D&D culture and gladly accepted, and set forth on reading loads of articles packed with tips, and watching videos, and trying to figure out how to play D&D, and how to be a DM. I had to find out What IS D&D?

I was familiar with its RPG descendants – things like Skyrim, Fire Emblem, and Legend of Zelda. I had grown up playing video games that relied on mechanics created for D&D. I grew up reading, listening and watching Tolkien and other high fantasy works. I was already connected to the world, and so while having never once played D&D, I had long been interested & appreciative of the world and its surrounding culture.

I decided to take this on and set out on my first quest: to figure out what D&D is. I began reading lots and watching videos, and messaging one of the popular Youtubers whose series on the subject was really helpful for me – he advised me about which of the official manuals were worth getting starting out, and in what order; Amber & the kids got them for me as early Christmas gifts & I was able to delve further into understanding the game.

For anyone who may not know explicitly, D&D is a storytelling collaboration by a group, wherein the characters role-play certain characters, while the Dungeon Master or game master mediates events and circumstances outside of the characters control (the setting, enemies, other allies, etc). Dice are used in D&D to allow for some measure of chance to govern the events and outcomes – does the attack hit? Do enemies ambush you in the night? Do you successfully jump over that pit? The skill set of a character impacts those chances through a set of modifiers to relevant situations (+5 stealth, +3 perception, -1 persuasion, etc).

Great! A storytelling collaboration. But. I am autistic & don’t improvise stories well. And I don’t have any experience role-playing characters (outside of Parade of Spirits, I suppose). How to I create a mental picture of a scene? How do I communicate that when I don’t know if they understand all the important details? I found a lot of opinions about these things online, and in the Player Handbook, but ultimately the biggest advice I received was that it will begin to make sense after we have gotten started with the 5e Starter Set module: Lost Mine of Phandelver. I was reminded that I did not need to know every little rule in the books either – to make a decision and look it up later so the game moves forward.

The first session I ended up having to pretend to be a goblin being interrogated, and during the second session I re-enacted the foamy latte scene from Zoolander with a high-ranking bugbear and his goblin servant after they worked out a way to make a steep climb easier for the whole party (a weighted rope, go figure) – YAY.

D&D = Reinforcement to math skills
D&D = Practice solving problems & hilarious spit takes

During the fourth session, I found out that kids don’t know what to say when they enter a business – they actually have to be greeted and asked a question. After a few NPC (non-player characters: anyone they might meet in the world or talk to that isn’t played by a fellow player at the table) encounters I understood that if I initiate with them in role-play — (after describing the setting). Ex: “Welcome to Stonehill Inn. I am Toblen. Can we get you something to eat, or maybe you need a room?”– that the kids can respond in a natural way.

So D&D = Real-world social skills practice, too.

The fifth session was entirely social, and opened the way to multiple quest options being opened up, which creates its own challenges – well do we drop everything immediately, or maybe come back to this? Do we keep talking to people in the town? This mission amounts to five days travel – would I really do that on a whim for a stranger? – I realized that as the DM I needed to help guide them out of this “analysis paralysis” (this term is used in reference to one of my own executive functioning challenges related to autism), giving optional advice about what to do next if they do not figure it out themselves. (As it turns out, leaving town for a 5 day roundtrip is not really the most practical thing do in the middle of your first afternoon back from being on the road for the last 3 days).

D&D = Supported-Decision Making.

The sixth session saw an even bigger jump in role-playing – also in social encounters – but with specific recognition of what individual characters would know, rather than what they knew as players. They had decided immediately that they would follow up on a certain plot point by talking to a character’s aunt & cousin, and C decided that some of the party should make a brief stop to speak with a shop owner that they had heard rumors about. This allowed for those three characters to have a distinct conversation from the other set of characters, and vice versa, and to later exchange information about the encounters (even though the players had been sitting at the same table). In the end, we were regaled with an impromptu a capella performance (in real life) over an in-game meal of bread & lamb chili.

D&D = Agency.
D&D = Empathic Cognition.
D&D = Respect for the relationship between guests and hosts.

Recently we had our 7th session. B was occupied so a subset of the characters did go on a separate journey from what had been planned. Aside from all the improvisation with what characters say, it was an opportunity for me to improvise encounters, including one in which they used a small bit of reconnaissance before deciding to intercede and save a commoner in trouble, thereby gaining this man’s trust and respect. During a nighttime rest, they were visited by a goblin couple who wanted to see if they were safe and ok, and who warned them about the woods – not everyone that looks like something you have fought has to be an enemy. As they handed over a comb to the banshee who owned it while alive – surprising even to me who was role-playing & improvising the character – sometimes an unrequested gift can be painful. The characters may just exist on sheets of paper, but their reactions – the feelings and emotions – can be felt, and not just played.

D&D = Helping strangers without any expectation of tangible gain.
D&D = Not judging people by their race or shooting because they are incidentally in the ‘wrong’ place.
D&D = Finding that the past can be hard for others in ways you would not necessarily expect.

I know other people have written things about the merits of D&D for autists, teens, and anyone really, such as increasing confidence during peer interactions, and how to navigate group dynamics, but my own experience, over just this handful of sessions, is that – even just at the surface – there is a lot to gain by sitting down and pretending to be your level 2 elf rogue or human fighter, or by pretending to be a shopkeeper, the innkeeper, and an aged veteran. The big chested, pushover mayor, and the freed farmer whose only concern is his family’s safety. The concerned citizens who are just two goblins passing through. The recipient of a gift who concedes to question from her guests, in spite of the pain it brings, but not before revealing as much.

 

“This … This … Why do you bring me this? It is death for the foolish mortals that come to this place. Why have you come?”

“We wished to return this to you – Sister Garaele recovered it for you”

“Surely not just to return it. What did you want of me? What are you here to ask? Just ask your question and go. Ask – and go.”

“We just – “

“Ask – and go.”

Revelations in Role-play of an Autistic, First-time D&D Dungeon Master

Strength Source Project at 48

amber dorko stopper

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

Happy Birthday Amber!

Tucker J. CollinsLeave a comment

I love you and I am thankful to have you for a friend, and as family. I am amazed by your goals & creative visions. I had limited experiences growing up to really be creative, but with you I have been able to participate in a creative community you created, and to work with you through a multitude of projects, from the parade through to things that are just exploratory.

That vision extends into educating the kids, and I am impressed and baffled by things you come up with for them. This is not just a benefit of homeschooling in general here, I know that this is because of who You are. As a student myself I greatly appreciate seeing how the activities for them so often center around their interests, and their passions. I couldn’t think of anyway better to educate, nor is there anyone better than you – I wouls have loved to be your student at their age.. I feel honored to get to co-teach with you, and recognize also how you bring our interests into the fold of teaching/learning as well. My own experience learning chemistry alone was undoubtedly formative, and it is a blessing to work with you to be part of that experience for them.

You are wonderful and I love you.
Happy Birthday Amber.

Amber POS 2017

Happy Birthday Amber!

SOMETIMES IT’S JUST FUN HERE

amber dorko stopperLeave a comment

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

amber dorko stopper

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