5 Years

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

THIS MUST BE THE PLACE

 

As of this writing, David Byrne’s “American Utopia” tour is just a few weeks in and getting critical raves. At the time that I bought the five tickets for our family to see it, it wasn’t the “American Utopia” tour; it was called “LiveNation Presents David Byrne” and was just being called a very limited East Coast tour with the “most ambitious” stage production since “Stop Making Sense”.

Well. As if we had any choice.

The press and scope of the tour multiplied in the months that our tickets sat in my inbox, and we were in no way prepared for the enormous March snowstorm — complete with cinematic, rolling thunder — and big, wet splats that unfolded from the sky “like doilies”, a friend described later — that started the night before we were to drive to Hershey for the show. (At the time I bought the tickets, the only other nearby venues were Wilkes-Barre, and Kingston, NY.)

As the snow fell, I watched on Facebook, on the Hershey Theater’s page, as ticket holders grew nervous, demanded a reschedule, and got nastier and nastier.

I was having an incredibly bad neuro day. But we had waited for this for months. And it meant so much to Béla. Ben’s strategy was to get on the road as soon as anything stopped falling out of the sky and the roads were freshly plowed. The kids were given free reign for this day of waiting, to watch TV — anything they wanted — which, of course, meant a day-long soundtrack to Lego “Ninjago”.

I have problems with high altitudes, and Hershey has been a problem in the past, so in that regard we were more prepared to go than the last time we were there. I use sports-type oxygen in the car. We had that. We had everything there was to have, ready. We were packed. And I was just a rigid, twitching mess. When the snow stopped falling, I’m sure many people would have opted to not have put me in a car headed out of town, but I’m sure that I expressed that we were going, as long as I was anything short of dead.

I started “coming back” when we were not quite on the Turnpike yet. We were in the car. Success! Of some sort. I tried to picture our destination. I kept seeing a restaurant. We were going to eat in a restaurant. Some sort of “family restaurant”, like a Cracker Barrel? (I think this was a leftover memory from our last trip to Hershey.) But I wasn’t sure what else we were doing.

I told Ben I couldn’t really put together a timeline for what was upcoming, and he said we were going to a show. We were on a highway with virtually no other cars, and the snow on the trees looked like clots that had come out of an old spray can. I wanted it confirmed that this was abnormal snow. Everyone agreed that it was. Seeing so few cars was also unusual, yes? Yes. I didn’t know what was normal, but I did know what was abnormal, so that was a start.

A show, huh? “We’re going to see David Byrne,” Ben said, and that didn’t set off any bells of alarm or terror, so I thought, great! We are proceeding with plan, even though I am not feeling all that up to it and don’t really know what David Byrne does for a living. The more we drove, the more I was able to sit up straighter and take note of our surroundings. There were quite a few accidents on the road, but still very few cars, although the closer we got to Hershey, the less snow there was. But I could not make a mental picture of the show we were going to no matter how hard I tried. We had been to the “David Bowie Is” exhibit just a few days before. This was not that? No. This was not that.

I was starving. We stopped and got hoagies at a Wawa, and kept driving.

It is important to normalize, or at least de-stigmatize, the experience of all neuroatypical people. As with any autistic person, I expect, and frankly demand, that people presume competence when communicating with me, a person who has temporal lobe epilepsy. Read up about what the temporal lobe is in charge of, and you will note that it is in charge of many things that you may associate with my personality, both good and bad. Temporal lobe epilepsy is a comparatively drug-resistant form of epilepsy. I have seizure clusters surrounding ovulation and menstruation, and when I am under a lot of stress. I am not broken, or unreliable.

If I thought about it really hard, I knew who David Byrne was — sort of — but didn’t remember ever being interested enough in him to drive this far, and I still could not put any images of my anticipation of this event involving David Byrne into the narrative in my head. And so I explained this to the kids; that my brain was just kinda putting the pieces back together. Like when you draw something on a window with your fingertip, and then blow on it to create the condensation to make it visible. My brain was “breathing” again and I was working on deciphering the pictures I had.

I went to YouTube on my phone and pulled up a Talking Heads clip from “Stop Making Sense”. For years, when feeling bad about myself and my seizures, I have watched this clip, because David Byrne makes my “symptoms” — my “disability” — into an intentional dance. It is aspirational. It has soothed me for as long as I can remember. That someone would not only NOT hide this kind of repeating, “abnormal” movement, but would use it to perform something wholly original, has at times been the thing that allows me to pick myself up and keep going.

Watching this clip as we drove to Hershey served the purpose I hoped it would. I saw David Byrne’s nose and chin on my phone screen, and they tripped the wire in my head, and knew exactly where we were going. I knew what the cover of the new album looked like, I remembered the articles I had read with Béla about how they had rehearsed the tech for the production. I knew that Béla absolutely loved David Byrne. I knew that I had sworn to use every penny of the sale of my father’s house that I could for joy — to eradicate the fear, the tightness, the terror that my father’s life had brought. I remembered choosing seats for this show, and looking at the total on the screen — over a thousand dollars. It took me a number of minutes to hit “Send” that day. But the kids — particularly Béla — were going to see David Byrne.

The closer we got, the more I had to use the oxygen we had brought, which was fine, and I was feeling not that bad — not really able to eat my sandwich, but not awful — by the time we got to the theater. We were sure they would not let me in with a bottle of compressed oxygen, and that was kind of a shame, because I missed it before we had gotten to the door. But we were there. It was happening. We were in. We had done it.

As soon as we went through security, I had a strange, anticipatory feeling — like I was waiting for someone to call my name. Two men passed on either side of me and I thought oh wow — aren’t those guys that Tucker’s dad knows? That would have been a strange coincidence. We made our way to our seats, but I was jarred at almost every step by the faces around me. I recognized everybody.

We found our seats, I went to the bathroom. I was definitely not having any seizures anymore. I wished I’d had the oxygen. But, in the ladies’ room, I was again taken off-guard by familiar faces.

I found my way back to our seats and sat down. Everyone around us was someone I knew. Possibly even someone I came with. While at second and third and fourth glance of the people seated near us, they were still familiar, they did not illicit the “Hey, THERE they are!” response that my brain was shooting out to literally every other person in the theater. But that response was being triggered by every new face that came into my range of vision. This was irritating as fuck.

I have had the experience of not recognizing faces post-ictally. That would have made sense. This didn’t.

I demanded that Tucker look this up on his phone — on one of his special scientist websites — what was the word for this? It must exist.

I don’t know if there was one specific word, but it was right there, as a post-ictal symptom for people with temporal lobe epilepsy — seeing strangers’ faces as familiar. Right there on the screen.

Thirty years since my diagnosis, and I had never experienced that one. I wondered to myself, what would happen when the one other face I definitely recognized — David Byrne’s face — appeared? Would it look twice as big on his head?

I don’t know if I thought about it much longer. When the barefoot, white-haired man crossed the stage to briefly speak to the audience before starting the show, we cheered. I looked at the kids — especially Béla — recognizing what a special moment this was for us together. I was so happy. We did it.

The show began. The man on the stage sat at a table, a large, curved object in his hand.

Here is an area of great confusion
Here is a section that’s extremely precise
Here is an area that needs attention
Here is a connection with the opposite side

“He’s holding a brain,” said Ben.

He was. We had made it to the show, and the kids and I had said to each other ten times already, “We did it! It’s already worth it!” But in the depths of my shame for not being a “normal” happy-go-lucky mom who could drive a car and did not have seizures, and who regularly had to watch a 34 year-old video of a rock star jerking around just to feel humanized — in the midst of finding some new artifact of my abnormality to contend with — this man had literally brought a brain onstage, and was pointing to parts of it and explaining what they did, free of judgment, and with music.

 

The second song was more upbeat. Again, I watched Béla — after all, it was Béla who wanted to see this man the most! This was his guy! — and I watched the show.

Then, something I can only describe as the thinnest knife ever made — remember the old commercials where the woman cut a knife-shape out of a paper plate and spread icing across a cake with it, to show how easily the icing spread? This knife was thinner than that paper knife. This was one-cell-thick, but it was a knife. And it went right through my brain. And I said to Ben, “Oh my God. That’s David Byrne.”

Ben agreed. Who knows how he actually perceived that moment: I was just excited? The enormity of it all was worth re-stating? Whatever. I was happy, so he was cool.

“NO!” I shouted. “That’s David Byrne on the stage!”

At this point, Ben sort of shushed me, like I was one of the enthusiastic drunks we see often at concerts. Suddenly, I was the concert drunk.

I was not drunk but I was VERY surprised. “That is DAVID BYRNE!” I said, turning to Tucker. “Up until this minute I thought it was GARTH!”

Our friend Garth is easy enough to Google. He is a well-known and highly respected artist. He does not look like David Byrne, in any way other than that he is a man over fifty whose hair flops around a bit. Not for one moment in the first one and a half songs did I think “Well that’s odd. I thought we came here to see David Byrne. What’s Garth doing up there?” It seemed justifiable. Names hadn’t entered into it. Of course the kids were happy — look at Garth! He’s always up to something.

Up until the moment when I realized it was David Byrne, I hadn’t really realized that I “thought” it was Garth. Garth was just the placemarker for the unrecognizable person on stage — who, again, was the ONLY other person in the room other than my family that I should have been able to recognize, and was the ONLY acknowledged reason I was there at all. I had both missed, and NOT missed, his entrance entirely.

What the fuck, brain.

But I was fully caught up now. Still wished I had my minty oxygen bottle. And when this happened, I danced as much if not more than anyone else. Ben took this, and had one of our kids on either side of him. You can hear them both singing here.

It was a beautiful show, a truly ecstatic music experience, and an amazing thing to have my kids jockey to switch seats so they each got time next to me, me standing with my feet on the floor, them standing on their wobbly old theatre seats, their bony hipbones pressing into me as we danced and swayed and sang.

I did not know Claudia knew all the words to “Naive Melody”, because I did not. But she must be listening to it on her own.

Home, is where I want to be
But I guess I’m already there
I come home, she lifted up her wings
I guess that this must be the place
I can’t tell one from the other
I find you, or you find me?
There was a time before we were born
If someone asks, this is where I’ll be
THIS MUST BE THE PLACE

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

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

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!

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!