Currently viewing the tag: "family"

Kit gets here tomorrow, and then on Friday we begin our very long drive of death to Florida to see my grandparents and go to Disneyworld. There are, I suspect, a lot of pictures to come.

To start, here is the cat:
batcat

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I’m changing my name.

Not my website or any of the various aliases I use online, but my last name in real life. I have a couple reasons for wanting to do this:

1. I want the family I build with Kitty to share a name. We’ve talked about combining names, but she already has a hyphenated name and expressed some discomfort over having to pick which parent’s last name she kept. By taking on a wholly new name (whether or not we choose to keep our original surnames as well), we are creating a family unit. Because same-sex marriage isn’t available anywhere we plan to live, we won’t have the opportunity to change it when we get married.

2. I’m fairly certain that it will be easier to change it now, before I move permanently internationally. I’ll need to get a new liscence, social security card, passport, bank cards, credit cards issued (and I’m sure I’m forgetting stuff in that list–help!); I’ll need to change my name with my bank, my job(s?), all of my online information. Some of these things I doubt I can do at all once overseas: I don’t think the consulate would be able to handle my request for a new social security card, for instance, if they could grant a name change at all. North Carolina apparently has some of the most lax rules about legal name changes in the country, requiring a court fee, two affadavits that I am not a criminal, and a 10 day wait. The legal fees are about $80-90.

3. I am not very attached to my last name. It’s pretty common, which does give it the advantage of being easy to spell. In fact, the only part of my name I’m attached to at all is Alison. I’ve never really liked my middle name. My last name is my dad’s last name (and my mom’s, since she didn’t change it after they divorced), and I have no real connection to his family. Basically, I have no compelling reason to keep it.

So then the question becomes: if I’m paying to change my name, and I’m set on my first and surname, what the hell do I do with the middle?

I could keep my current middle name (1). Alison [bland middle] St. James. I could keep my current last name. Alison [bland surname] St. James. I could keep both. Alison [double bland, so intense] St. James. I could change it altogether. There have been a handful of names I’ve been interested in using for myself for years. I could go with my facebook first name, which sounds pretty good as a middle name in this construct.

Potential middle names, in no particular order:
Patience
Jane
Rosalind
Constance
Merit
Anna
Even
Laurel
Rose
Aster
[current surname]

Thoughts?

1. I’m a little reluctant to be posting my full name up on the internet–I use a pseud on facebook, for fuck’s sake. Those of you that know me personally can just insert the correct names where they belong.

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A belated post for all the awesomeness of Florida and to say that while I have thoughts about my new job, I promised not to talk about them extensively in online public spaces. Email if you’re that curious.

Alright. FLORIDA.

The first day and a half were spent at Universal Studios. We arrived Sunday afternoon and spent the evening exclusively in the Wizarding World of Harry Potter (part of Islands of Adventure), spent Monday morning at the original Universal Studios and then Monday afternoon back at Islands of Adventure.

Almost all of my pictures were from HP, because, um, awesomeness?

The Wizarding World of Harry Potter

The Wizarding World of Harry Potter

The Wizarding World of Harry Potter
(This was taken from inside of the greenhouses while waiting in line for the awesome ride of awesomeness Harry Potter and the Forbidden Journey.)

The Wizarding World of Harry Potter

The Wizarding World of Harry Potter

The Wizarding Wolrd of Harry Potter

After HARRY POTTER HARRY HARRY POTTER we spent Tuesday at Disney’s Animal Kingdom. It was, how shall I put this, AWESOME.

We were at the gates before they opened, along with a few hundred other people. The park opens with employees carrying a rope and setting a walking pace towards the far back corners of the park, so that guests can’t rush and hurt themselves, I suppose. We ended up walking with a pair of employees, both of whom had been with Disney for a long time. One was new to the park, though, and was being trained. We must have made a good impression, because Raphael, the man doing the training, took us to the employee entrance and let the three of us skip the growing lines for the Kilamajaro Safari. This is a long safari trek through a variety of African habitats with dozens of different animals out living as they might in the wild (the big cats have subtly separated habitats from the herbivores). We skipped the fast-pass line and the regular line and were placed in the second row of the very first bus of the day, behind another very friendly employee in the front row whose job it was to count the animals outside. Stina and Dylan told us to get on the first bus we could, as the cats go inside for most of the day due to the heat, but I don’t think they meant that! The employees called it a Magical Moment. I tend to agree.

Animal Kingdom

Animal Kingdom

Animal Kingdom
(I feel like this ostrich is begging to be a tumblr meme.)

Animal Kingdom

Animal Kingdom

Animal Kingdom

Animal Kingdom

Animal Kingdom

Brad took a lot of photos, too, and they are available on his picasa page.

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But I do know where we’ll end up soon: HARRY POTTER LAND.

That’s right. On Sunday, August 8th, I will be flying to Florida/the outer reaches of Hell and going to The Wizarding World of Harry Potter at Universal Studios. We’ll also spend a day in the rest of Universal (meh) and a day in Animal Kingdom (woohoo!).

On Wednesday we’ll drive to my grandmother’s house, just south of Tampa. Expect lots of pictures. My brain’s brewing something interesting, so when it decides to use coherent English I’ll write.

If you are my real-life friend and you would like me to send you a real-life postcard from real-life Hogsmeade, send me your real-life postal address at ayagirl at gmail dot com or message me on the facebooks.

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Just got back from my diagnostic interview at TEACCH. I have forms to fill out and turn in, at which point I will be on the wait list for an official diagnosis. As I “passed” the intake interview round, they agree that I’m almost certainly on the spectrum and want to work out precisely where (useless as that may be in 2 years and the new DSM). Having my mom there was, in a lot of ways, anxiety provoking, but it was also really helpful to have someone corroborate stuff from my childhood, and she remembered things I didn’t or couldn’t. I’ll do the forms over the weekend and take them in Tuesday.

The interviewer was very nice, and didn’t seem bothered at all that I made it through college before I needed help–she said that it’s not unusual with the adult population they see. I knew at that point that this would be alright, that they weren’t misinformed or lazy or ill-equipped. They work with people like me.

I have a job interview tomorrow to work as a youth counsellor for an outreach program. I really hope it ends in a job. Oh, a job. Never thought I’d miss that.

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Catching up on the last bit of Melbourne, the trip home, what I’m doing OMGRIGHTNAO and plans.

We went to Kate’s hens night, which involved thai and karaoke and a lot of overstimulation, and the wedding, which was beautiful.

We also went to a place trying to bill itself as molecular gastronomy coffee. It wasn’t, so much, but they did have test tube coffee:

looking pensive over coffee

Then I took some more pictures of flowers:

roses

I flew back to the US and it took forever, 10 hours of which I spent chilling in the SFO airport, which may be the most boring place on earth. I’ll make a point to go through LAX next time.

I did come back to my kitten, which is some consolation.

artfully backlit

under the covers

I got rid of GoDaddy hosting and signed up with ANhosting.com, largely because Hank Green told me to do it. It’s been a breeze and I’d reccomend them.

Currently, I am unemployed and living in Greensboro. Well, that’s a lie, right now I’m in Staunton visiting Stina and Dylan, but on the whole I am in Greensboro and loathing it, but it’s free and hopefully there will be jobs. There’s been a lot of drama about my car insurance and liscencing, but it’s over and I don’t want to rehash it.

ON JULY 1 I HAVE AN INTAKE APPOINTMENT WITH TEACHH, THE AUTISM PEOPLE IN NC. IT WILL BE FREE.

I’m super excited but also anxious for 2 reasons: 1. I worry it’ll be like Dr. Gaddis again, and 2. it might negatively impact my immigration. We’re waiting to hear from a lawyer, but this isn’t a full-on diagnostic appointment and nothing stays written, so I’m keeping this one and hopefully making the follow-up diagnostic appointment and then making decisions after Kitty has her surgery and can see again to visit lawyers. If I have to wait to get my papers before I can get my other papers, that’s fine. Australia has plenty of very good doctors in this regard and I’d be happy to see them. BUT THIS ONE IS FREE.

So…that’s all. Etsy sale on right now. I took lots of pictures that I hope will become my moo cards.

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In my head
I repeat our conversations
Over and over
Till they feel like hallucinations
You know me:
I love to lose my mind

It’s less than a week before I have to leave Melbourne, and so much has changed.

I landed and was whisked away to the Windsor Hotel, a beautiful, historic bit of miniature castle, where we had a gorgeous view of Parliament and breakfast in bed and high tea.

so tired...just got off the plane...

golden dawn light

We’ve been down to the beach…

contemplating the ruins of fish and chips

shaky lights

And I’ve taken lots of photos of flowers around our neighborhood:

roses

roses

roses

roses

We learned a valuable lesson (and watched a damn lot of Glee):

lesson learned

We went to the zoo.

kitten!

And then I learned about a medical program that will want me, no strings attached, in Sydney.

I want to go, very much, and could apply next year and sit the Australian version of the MCAT in February. We need to speak to immigration lawyers, I need to get Prosper cleared for immigration. Everything is suddenly on an impossibly fast timeline. I’m in a mild panic.

I wanted to maybe move with the wonderful Sarah to Baltimore, but I’m concerned I won’t be able to get a job that pays enough in just a few months in a new, big, expensive city. I wanted to move to Atlanta, though less than I did a couple months ago. I wanted to live with my mom, even though the idea mildly nauseates me, because it’d be cheap and require little effort. I’m not sure what I am going to do, but it’ll be something. So at least I’ve made the decision to act, and not let the inertia get to me–and that’s the most important step.

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I have an invisible disability. You can’t tell by looking at me that there is anything neuroatypical about me. You might guess when I speak, though I put a lot of effort and spoons into keeping the conversation going and my tone appropriate (volume sometimes escapes me, but I’m usually WNL). If you do notice anything off, it will be in a complete inability to keep small talk going for more than a couple back-and-forth rounds, or the regurgitation of trivia only marginally related to the situation at hand (“Scots have red hair because of Viking settlers…”).

Up until a couple years ago, I had no real awareness of autism. My first introduction to the topic was in 8th grade when the county-wide “special” school was piecemealed out to the elementary and middle schools by group. My middle school became host to an autism-only classroom, placed in a trailer (about half the school was trailer classrooms) and only interacting with the rest of the students by sharing a lunch period. The students were all boys, and all non- or minimally-verbal. I was pissed off that I wasn’t included, because I misunderstood–I thought it was an artistic classroom (thanks, auditory processing!).

It wasn’t until I was in my 20s that I really learned about autism and had the terrible moment of self truth: shit, I am autistic.

You see, I grew up knowing there was something different about me. I was a target for bullying even through college, and work. I did not make friends easily and held the few I did make jealously. I was upset if my friends made other friends, because invariably they would not want to play with me anymore. I was exceptionally bossy because I needed to be able to control the interactions; playing with kids is hard because they do unexpected stuff and I could not handle the unexpected. Being bossy was my attempt to eliminate that element of anxiety. I was a very picky eater, both in texture and taste. I was gullible with peers and could be goaded or encouraged into bad behaviour very easily; I had no sense of what made a friend different from a bully if both were being nice to my face. I probably would have benefitted strongly from a visual schedule, as I needed multiple reminders to do things like chores (and, later, when I was in high school and college and had more control over my scheduling, homework and papers), but chafed against verbal reminders. I exasperated my parents with apparently selfish behaviour and a lack of social graces. I was distractable in classes and made numerous “careless” errors on work I knew and understood because something else caught and held my attention.

I was also hyperlexic, reading and writing by two and a half. I learned early that language helps, and used this to soak up information. I learned as much as I could about whatever I was interested in; my interests could last days or years. I played with dolls well into my teens (and have been carting my American Girl doll around with me still–she came with me to Australia and then to Virginia). I can still sing songs or parts of song word and note perfect that I learned for my fifth, sixth, and seventh grade choir performances, 15 years ago. I only need to go someplace once before I can get there again with few or no reminders or prompts. I could look at a map and visualize my path. I amassed vast amounts of trivia. I spent a lot of time alone, which gave me to the tools to really consider my self-conceptualization. I draw beautifully, and sometimes write well. I experienced the delight of synesthesia, my tastes and textures lighting up with colours.

All of these are things, states, experiences, emotions that I can look back and say “there was probably some autism involved in that.” I cannot meaningfully separate out autism and my personality. Autism has shaped who I was then and who I have become as an adult. Autism meant not looking adults in the eye when being disciplined, and being yelled at for insubordination for it. Autism meant sobbing when the boy I had a crush on “killed” the oil clay cat I made and kept on my desk in 4th grade. Autism meant being perfectly willing to taste pine sap when a girl in my class told me it tasted like maple syrup–twice. Autism meant not skipping a grade. Autism meant being able to hear perfect pitch in choir, even if my rogue vocal chords could not always produce it. Autism meant being teacher’s pet. Autism meant taking an overload of classes every semester in college, just because I could. Autism meant the small, private university I loved over the bigger, public university that had more academic choices–and, because of this, autism meant my best friends.

And yet, I didn’t know about autism.

Growing up, for me, led to a set of beliefs that I have had a very, very difficult time removing. I didn’t know that many of my struggles and achievements could be attributed to autism. Instead, I attributed them to two ideas:

1. I am bad and worthless.
2. I am ridiculously smart.

I grew up feeling frustrated with the world around me, and knowing that the world often felt frustrated with me. I often didn’t understand what was wanted of me, but admitting that and asking for help would mean I wasn’t smart, right? So I didn’t ask for help, and did things wrong, and then I was bad. It was a self-perpetuating cycle. To be not bad meant I needed to be able to do things properly, and I was smart, so I should be able to figure this out! And then I wouldn’t, and then I’d fail, and then my self-esteem would sink another notch. Self-esteem and the appearance of confidence are not the same thing.

Being ridiculously smart meant that it was okay I didn’t understand or particularly like my peers (it was mutual on both points). I desperately wanted friends, and when I was finally working out that bullies and friends are not, actually, the same thing at all, I consoled myself by remembering that I was smarter, better, more likely to succeed. I told them they had smooth brains. I sought out the company of adults and books and the internet–it was still pretty new, then. Being ridiculously smart was the only defense mechanism I had against my classmates, and I hung onto it with all my might. This was not a positive self-image. It was bitter and angry and filled with self-loathing. I could not be normal, so I had to compensate with the only thing I believed was of worth about me.

The thing about defense mechanisms one develops in childhood is that they’re pretty difficult to get rid of later in life. I’ve learned about autism. I make to-do lists and schedules and keep a planner. I write out my thoughts and make more lists and get post-it notes. I rehearse conversations, and try to take advantage of this strange, fabulous brain. I subject people around me to trivia endlessly.

And yet, still, if I miss a dose of my migraine medication, or forget to eat, or don’t call the bank to tell them I’m travelling for a month to Australia and could they please not flag my account as hacked for the fifth day in a row because I couldn’t remember to write the post-it note that would remind me to call, or I make a grave error with my friends, it all comes back and I am eight and I am bad and a failure. I can feel my self-esteem drip away, as if I was a watercolour painting put out in the rain. And if I am bullied at work, or forced to listen to misinformation, or interviewing for a job that I am ridiculously overqualified for, or rejected from a volunteer position because it didn’t occur to me that I could lie (or even just not disclose) about my mental health history, I can feel the irritation and self-righteousness boiling up inside of me. Damn it, I am too fucking smart for this, why can’t they see that and value the one valuable thing I have to offer? (And they don’t, because being smart is really only worthwhile when you can temper it with being sociable, and then we’re back to failure.)

You can’t tell by looking that I’m not neurotypical–not at first. Because I grew up without notions of neurotypical or autism or healthy self-esteem, you’ll get a carefully crafted idea of who I could be, if only I had been aware that I was autistic.

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I apparently fail at in-laws. Kit’s mother has a degree in disability studies and while I probably knew that information, I apparently failed to file it into the storage system. My brain makes me laugh.

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This is a long lead-up, but it’s probably worthwhile. The combined topical drift and pedantry is also pretty indicative of what it’s like to live in my head.

So last week I lost my star on Jezebel. Jez is a Gawker Media website, and uses a tiered commenting system; commenters with stars by their names are always visible and post in black text, while commenters without stars are defaulted invisible and with grey text unless a starred commenter “promotes” the comment (the text turns black, but the commenter herself will remain unstarred). Last summer, when they put this sytem in place, I already had a star (the rules used to be 40 people following you or more earned a star), so I’ve been blissfully spouting off about disableism, autism, and other topics for close to a year, confident that my comments were always visible and always likely to be read. I have about 250 followers right now. In what ultimately was not a surprising move, I called out the editors on their ableist language again and got my star taken away as penalty (also, some delightful splainin via email!).

Since then, I’ve found that I’m less inclined to participate, because I don’t feel my contributions are automatically read or assumed to be intelligent. Funny how losing privilege–even silly internet privilege–reinforces the desire to not speak out at all. I posted a comment in the free-for-all section of Jez, groupthink, about this effect and ableism on Jez and it garnered a lot of interesting responses. One of the most interesting made reference to disability studies.

I think I knew, conceptually, that there was such a thing, but it had never really occured to me to think about it before. I’m seriously wondering if one can do a combined PhD/MD in disability studies rather than the more usual neurosicence or pharmacology or such.

This lovely commenter also gave me a link to Disability Studies Quarterly, since I had (of course) brought up autism (I’ve made no efforts to not be out, as it were, on Jez) and this quarter’s special topic is autism and neurodiversity. Please read any and all of the articles–I am, and they’re great. I can’t talk at length about them yet as I only got most of the way through “The Superior Half of Speaking”: An Introduction when I was struck with an astounding thought.

(This is not that thought, I’m getting there.) My brain works in a somewhat unusual way. I’m not quite sure if it’s autism, giftedness, or both, but I like it and would really hate to lose it. Like many people on the spectrum or with related conditions like OCD or ADD, I have difficulties with focus. I’m really awesome at focusing on one thing to the exclusion of everything else, which can look pretty obsessive, and I have a hard time changing the topic or subject of my focus. Changing tasks is difficult for me. I can marginally participate in a conversation and then revert right back to a previous topic, because that’s where my attention was the whole time. Multitasking and I are not friends. Conversely, unless I am interested and engaged in a topic (and sometimes even then), my attention wanders away from me to something more interesting (usually my own brain and products thereof). I cannot list how many times I have gone to do a simple task like put on my shoes or get my phone out of my bag and been waylayed for five, ten, fifteen minutes because I had a thought! and it was super interesting! and I forgot what I was supposed to be doing, and then when I get the feeling that I am meant to be doing something else I spend another few minutes trying to figure out what it was.

Meanwhile, as I’m busy focusing on one thing with the concious part of my brain, the rest of my brain is in a constant flurry of activity. As I take in information, it fits into what is my neuron-based cross-referencing system. My brain works like wikipedia: the more information I gather, the more connections I can make between facts and “articles”/topics, and it does it all without my really paying attention to it (though when I get distracted by my own brain, it’s like hitting the “random article” button on wikipedia, which, I think you’d agree, is way more interesting than a lot of other stuff).

Sometimes my brain makes really great connections–coherent thoughts so good they startle me out of whatever I’m doing. Have you seen House? It’s like that. And possibly just as obnoxious.

The topic of this blog post was one of those OMG I AM HAVING A THOUGHT moments.
So I was reading “The Superior Half of Speaking”: An Introduction, and I got to this sentence: “They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently.”

I studied International Relations for five and a half years of my life before crashing and burning. I have a BA and a GD in the subject, and while I found most of the theoretical stuff to be too abstract (or maybe just too abstract, too quickly–as Kit would surely point out, I can and do grasp philosophy when its presented patiently, repeatedly, and in terms I am familiar with), I really latched onto a single theoretical model and still like it a lot. I was a proud Constructivist, and the only one in either university, as far as I know.

“Constructivism” exists in a lot of disciplines, but I’m only super familiar with the political model. Basically, Constructivist thinking holds that the international political system is a self-perpetuating entity. The political systems we have are what they are because every time a nation makes a political move on the world stage, they reinforce their place in the picture. If you believe strongly as a political leader in open borders, or fair trade, or isolationism, or completely unobstructed free trade, you can’t wait for other countries to make the same emotional decision. By declaring your country to hold any given ideal, you inherently change the system of nations and your importance in that system. It’s fancy political speak, really, for “be the change you want to see” (I think Obama is a secret Constructivist, or at least his slogan-making people are). My Master’s dissertation, should it ever arise, was originally going to be on Constructivism and shared language leading to the perpetuation of shared political ideology. This is a topic I’ve read about, thought about, ruminated about extensively–information that my internal wikipedia can pull from without my even noticing.

So I read that line (again: “They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently.”) and suddenly I had A Thought:

Neurodiversity and the Social Disability Model appeal to me because they are Constructivist concepts.

The idea that disability is inherent in society, not the person, is meaningful to me emotionally (I don’t feel particularly disabled), but it also appeals to me intellectually. I am part of a broad spectrum of people, and my particular band of wavelengths is called autism (actually, I see the whole of neurodiversity as a 3-d Venn diagram, but I’m not sure how to translate that into words and haven’t found materials to create it visually yet). The idea that my group does not create the power structure because it is not dominant, so my group’s needs are seen as extraordinary or disabling, is an idea I can understand through my experience as a political Constructivist and translate into understanding in disability studies. Before, I was approaching disability studies as an unknown field, full of unknown ideas and language and concepts that (while I’d certainly get them eventually) were anxiety-provoking because they would be theoretical to me. Now I feel like I have an “in” and I guess I need to see if either Sydney or Melbourne offer a disability studies program, or would be willing to partner with another local university (I know LaTrobe has an autism research centre, so maybe they’d be a good place to look) to do a combined PhD/MD. Pursuing a combo–this specific combo–would make me be a better autism advocate and, I think, researcher. I think it would also make me more qualified to be a professor of the occasional class.

I didn’t really need to complicate this career/educational goal of a simple MD, but I think this might be even better.