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

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

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!

Bare Necessities

Today marks the day the 4th anniversary of when I ‘came out of the box’ – the day on which I began to have a drastic shift in emotional awareness, clarity, and a lasting change in my affect. I could not have identified that the box was there beforehand, but even relative strangers to me at that time had recognized that something big had shifted in me, and I was no longer as ‘cold’ & ‘aloof’. As time has unfolded since, I have gained perspective about the box, what it was & why it got there.

 

For no reason in particular a song from my childhood popped into my head recently. It was a triplet from the Bare Necessities in the animated version of The Jungle Book.

Look for the bare necessities
The simple bare necessities
Forget about your worries and your strife

The song essentially is Baloo’s way of guiding Mowgli toward accepting poor circumstances and to be more open about going with the flow. It is a familiar sort of notion to me, one that I had undoubtedly carried a long time.

This notion – of passive acceptance of shitty situations – is a significant part of the coping mechanisms that created the box.

I had ‘accepted’ my mother’s dying and death in real time, at the expense of really dealing with anything for years. But no bereavement counseling was provided anyway, and I continued on from that experience in an environment where addressing the way I felt would have led to nothing. Denial and revisionism kept the truth at bay, though the closest it probably had come was when one brother had remarked that “She was a very complex person” in response to my sister’s feelings.

In the face of the immediate, physical bigger struggles – food insecurity, late rent, utilities being shut off – there wasn’t a space for dealing with death. Moving houses. New school. So on. Suppressing those other feelings, and entering a sort of emotional maroonment, was how the box manifested. To cope with deficiency in my daily life, I might convince myself that I needed less. My box filtered out all but the bare necessities, and sometimes even more.

But today is the anniversary of when I shed the box. That day when, having become vested in a new, nurturing & secure home environment, and faced with a challenging situation that called on me to be emotionally supportive in a way I had not ever been called to, the box lifted. The compacted layers of suppressed feelings slowly came loose over the last few years, but within the first couple days at least I had felt really happy. I was connected and in touch, and people in the house thought maybe something was wrong with me. I hadn’t gotten out of the box on my own, but precisely because my best friend needed me.

These days I am a lot more interested in bear necessities. And sloths 🙂

Bare Necessities

Social Insecurity

I am writing this to express to something that I learned during 2016, which is demonstrative of the failures in oversight that were part of my childhood, and how a few simple actions might have made a significant impact on a lot of people if they had been carried out in 2008 instead. While there are many open questions about what happened in the past, I am not looking for, nor open to, answers to those questions. Writing this has been beneficial to me, and I hope that it may further benefit others in the autism-supportive community that I have gained in the last few years.

 

In June of 2016, I enacted the series of steps needed to meet with the local Social Security Administration office about the survivor benefits I might have been eligible for at the time of my mother Andrea’s death. Amber and Ben had occasionally asked me since I was 17 about whether my biological siblings and I had received survivor benefits. I knew nothing at all about survivor benefits and had initially been resistant to pressing further into it.

On the one hand, I did not have a clear understanding of what the benefits were and what the requirements for my mother would have been to receive them. I also had a fear about what it would mean if these benefits had been received, but without my knowledge.

I became open to exploring this issue during 2016. I had already had to work with my school’s financial aid office so that I no longer would be dependent on my father’s tax returns, which had been repeatedly difficult to acquire, and to file my FAFSA early in January. That January I was finally freed from the mounting anxiety and disappointment around my father’s abilities, and with clarity and an honest appraisal of things I felt more prepared to handle what might be an uncomfortable truth about the Social Security benefits.

 

The first time Amber and I went into the SSA office, we learned that “no one had ever applied for benefits on [my mother’s] record”. There was a small sense of relief knowing that the survivor benefits had not been received and spent without my knowledge or input. However, I was also told that “there are no retroactive survivor benefits”, though I could apply for disability benefits on account of being autistic.

This response – that “no one has ever applied for benefits on this account” — seemed to indicate that there must be something that had been available, even if it was no longer available. Following her death, Andrea’s husband had written that an SSA agent had told my mother (later learned to have taken place by phone) that she hadn’t worked enough in the years prior to her illness for us to receive survivor benefits; he made sure to indicate how friends could make up for this “big part of [his] childcare fund” by donating money or time.

We now knew that the statement that “she didn’t work enough in her lifetime to have the government do anything for the kids” was discordant with the facts we were given by the SSA directly – that no one had ever applied for benefits on the account at all. We decided to press further on, returning with legal counsel.

We scheduled an appointment for an ‘application interview’ at which I went through the steps of applying for benefits through my mother’s account, as might have been done at the time of her death when I was fourteen, and four of my five siblings were still minors eligible for benefits. Near the end of the interview, I asked the Social Security agent if she could specifically tell me the amount that we would have qualified for had the benefits been applied for in 2008 when Andrea died. Where I had pictured the low number being on the order of $25 – $75 per month, I was not prepared to hear the actual amount: $450.00 per month, across all eligible children. At $90 support/child per month, this would have amounted to more than $30,000.00 in benefit before the last of us became an adult.

We spent years before her death with limited resources and on food stamps, and living in abject poverty after. I got clothing for school initially as a form of charity, but when I gained weight I had to buy clothes from the thrift store; I still didn’t have enough and spent a lot of time wishing no one would notice when I wore the same things over. I walked in shoes until the tread was gone and holes were letting rocks and water in, so that I wouldn’t have to burden my father with the charge of paying for replacement shoes. I was completely reliant on the generosity of others for things like textbooks, where the costs at times were easily $400. I was poor, and felt it. And every relationship I had in those years was colored by the fact that I was known to have little.

And while $450 per month of support wouldn’t have changed everything, it would have changed a lot. It would have kept the water or electric from being turned off. Or kept our internet on at times we had a lot of schoolwork to do. It would have meant that I had the security of asking to replace shoes, even if infrequently. It would have meant that I at least had something.

We were led to believe that we were eligible for nothing, and it was left at that. Did anyone question this? Did anyone suggest trying to fight the SSA over such a decision? It would seem not; that is, not until Amber, Ben and I sought answers. It is not unlike how my mother handled me being autistic – Andrea had told me she thought I had Asperger’s syndrome, and it was presented as “being socially awkward” and “having above average intelligence”. I received no formal diagnosis, no clinical intervention, and no further information. It was not until I was diagnosed at 19 that I had the opportunity to experience life with an actual autistic identity. Amber and Ben saw the same things everyone else had seen for years, and chose instead to follow-up, to ask questions, to pursue it like it mattered – exactly what Andrea and everyone else hadn’t with autism or the survivor benefits.

 

It is hard to picture my mother finding out that she had been denied a significant amount of money meant to cover the raising of her children after her death, and never mention it. She was loud & combative, and would over-zealously “defend” her children’s rights to a fault. I cannot wrap my head around why this sleight would have gone unmentioned until after her death. It is out of character for her to not have not made a big deal out of this, or to at least have found someone else to do so if she was too sick to make a fuss on her own.

Another relative confirmed that my mother claimed to have been told by the SSA that she was ineligible, in a phone call. She was sick, and even making phone calls was becoming increasingly more difficult to do alone. Calling the SSA takes over an hour on a good day to get to the point where you can ask an SSA employee a question. So I can only assume that someone helped her contact the SSA, maybe she even “pulled her cancer card” (this is how I heard her refer to taking advantage of being sick) in order to be provided more information than they typically would over the phone. My own success in 2 hours on the phone with the SSA was limited entirely to learning the procedure by which I could begin a conversation with an SSA agent in person and what documentation would be necessary, while no consideration was given to eligibility until I had an onsite appointment.

Throughout my mother’s whole illness, the house almost always was filled with friends, family, and occasionally professionals. Between that, and my mother’s propensity for confrontation, I do not understand why she would have accepted that we were being denied death benefits owed to us. Given that the Social Security Administration reported the fact that we would have been eligible at that time to receive a total of $450 per month, how was any of this misconstrued into a denial of death benefits in the first place, and why would she have not gotten any opinions from anyone else about it.

Regardless, no one did take another step until we went in 2016. And if anyone had taken those 90 minutes to do so in 2008, we would have been ensured the death benefits owed to us – to myself and ALL of my siblings.

 

I know that people’s lives go on after someone dies, but this, in the end, required very little work to find out, except a lot of emotional work personally to get there, and it would have had a significant financial impact if the time had been taken to do this 8 year ago instead.

 

We were poor before she died. And even with $450 per month we still would have been poor. It would have meant that groceries stayed in the fridge a little longer, and detergent in the laundry room. Maybe health insurance could be an option, a physical or a dental appointment – I had none for years.

The financial state of my upbringing tested every aspect of our basic needs – food, water, shelter, clothing, and security – and having that benefit from Social Security could not have fixed all of the problems. What it could have done though is allowed the 15 year old me to have a little less shame about what we had, and what we lacked, and to have a little more self-respect. This to me, is why it is worse to have found out we were eligible for $450 per month, rather than $25 or $50. As numerous as the helping hands for my mother were, this thing still managed to slip through so many people’s fingers, and what might have cost some time, I paid in dignity instead.

Social Insecurity

When 53 is the average age of mortality for autistics, that makes all of the mid-20s burnouts and meltdowns mid-life crises.

When I turned nineteen, I was weeks into my second term in college, and, as in the first term, was back to working in the library until the sun came up multiple times a week. My workload was unmanageable, and trying to keep up was affecting my health. I felt more and more like my effort was in vain, and that my life direction was misguided.

To top it off, I was now half the age my mother was when she died, and I was the same age as she was when she conceived my oldest biological sibling. At my very age she was embarking on the confusing, messy business of parenthood, unaware that her life was half over.

I knew this though – that her life had been half over – and it highlighted how little I knew of the future, and the unsustainability of the present. It was a mid-life crisis, and I had recognized it as such, there in the library as the morning neared. I decided to drop the advanced elective that had held me to the fire for weeks. It did lighten the work load, but it didn’t save me much sleep in the long run.

Since then, I have changed homes, schools, lost 70 pounds even. And I also now know that I’m on the autism spectrum. Where I had understood Asperger’s Syndrome to mean being “socially awkward and intelligent”, I now understand that the sensory processing challenges, executive functioning deficits, and mind-blindness that have affected me all fall within the autism heading as well, and being aware of these as problems has allowed me to work with tools to address them, much to my own sense of well-being. My ability to kick over my head, limber stretching, and the excessive degree to which I lean on my surroundings for support I now know to be a result of ‘low tone’, a common trait in autism. Neuroscience research in autism mouse models have further connected impaired motor coordination to an altered synaptic baseline of activation, making it initially more challenging to encode new motor programs in the cerebellum; while I had not heard of low tone yet when I read this research article, I was able to think of the results with respect to my own experiences.

It has now been year since I became publicly open about being on the autism spectrum, and in this past year autism research has uncovered more and more about the long-term outcome for the lives of autistics, from co-morbid health conditions to the job and housing crisis developing for my own age cohort – the autistics diagnosed and given support as children, who are now aging out of those support programs as adults. And in this same year, autistics have been harassed in schools, abused or murdered by parents, and others killed by police during high-stress induced meltdowns. I have meltdowns, and it is scary to think of the danger that armed officers might be to me, lacking training to recognize and act in this context. I have an app now in case I find myself unable to speak in an emergency situation, given the willingness of the other person.

Knowing I am autistic does not protect me from these realities, but I would rather know that I am autistic, and be aware of these things, and try my best to do a little good for someone else that felt like an outsider growing up, impassioned yet disconnected. As I read about the experiences shared by other autistics online, in journals, books and more, about various stages of growth, coping with stress, and burning out, and much else, I am able to feel a sense of camaraderie with total strangers who bear more in common with me than blood relatives or anyone I ever was in class with.

In a world where the pressures of performing, interacting, and doing ‘normal’ things drive some to the absolute edge, it is unsurprising that other autistics are experiencing this by the early 20s, whether on their own for the first time, trying to find work and maintain employment, to feed themselves, or while dealing with significant sensory challenges and executive function impairments.

While it may have been absurd to be experiencing what felt like a mid-life crisis at 19 because of the age at which my mother died, the life expectancy of autistics has recently been found to be 54 years old, compared to the US average of 78.7. I guess that makes the burnout of autistics in their 20s a lot more like mid-life crises.

When 53 is the average age of mortality for autistics, that makes all of the mid-20s burnouts and meltdowns mid-life crises.