family impact on family

I’m going through and rescuing some old drafts that got lost in the draft box, so hopefully for the next couple weeks I’ll be posting more frequently. Some of the details might be a bit out of date and sometimes the topics are a little bit silly.


So in my earlier-autism-maybe-read-everything-watch-everything-even-slightly-mentioning-it but before my allowed-to-consider-the-possibility-to-myself days, I started watching Parenthood. Also, admittedly, mostly I think I started it because of that thing where when you finish all the episodes of one show on Hulu, it throws you onto another one.

But then it got older and I stopped liking it as much

(mostly because things got sad and stressful
and then so did life
and so I started wanting my tv not to be sad. But to have it be happy thinking.)

And then I’ve rewatched some since.

And what bothers me about it is my oldest-sister-thinking. My oldest-sister, always-responsible thinking. Because I love routines and I love rules, but I also know that the overriding rule has always been, it has to be done. People have to be safe. If my sisters don’t do it, then I have to do it, even if it isn’t fair. (For things that have to be done.)

Because I watch scenes where there are
“THIS ISN’T MY JOB”
and know that I never could have done that because it was my job. It was my job to help. It was always my job to help.

My sisters have screamed that (and I sure I have too, but rarely rarely rarely because as the oldest helping WAS MY JOB) as an older sister HELPING WAS ALWAYS MY JOB.

(And I know I don’t have to like every autistic character ever*, and that I don’t like middle school and teenage boys in general** which probably made it even worse but this made me hate it for a while a long long long while because I would have never screamed THIS ISN’T MY JOB)

And to watch everything be a CATASTROPHIC CHANGE and CATASTROPHIC REARRANGEMENTS


It’s weird how I was considered a big kid at 10 who had responsibilities and had to stick to them, and my youngest sister at 17 is still considered little. My parents commented on how she has a very different life (which is certainly completely true) and my parents weren’t nearly as old and frequently injured as they are when she is the same age. And its true.

But I also spent high school waiting for rides because with two parents and three children, the one who is old enough to wait at school as opposed to having to go to a place for an activity, is the one that waits. Once I was old enough to drive my siblings, I spent (some but not all) late afternoons doing homework outside soccer fields and dance studios.

I wonder what pieces are autism and what pieces are older sister-responsibility-pieces.

Because some pieces are both.

I hear stories about how everyone centers around the autistic kids life. And disruption! Well, in my mind, nothing was a bigger disruption than my sister’s dance classes almost every day and sometimes over an hour away.

Mine were the quiet kind, where we turned into a family that didn’t do birthday parties because I didn’t like them, so my parents never got in the habit of big parties. The differences between my parents telling me to stay out later and the strict curfew my youngest sister has.

We almost never had babysitters because I was usually scared of them.

Of course, I never went to high school parties like the ones on tv. I thought they were mostly plot points to move the story along, like cafeterias. Both of them were things I learned later on were very real. In “peer counseling” sessions which were mandatory school-wide discussions that occurred in section and lead by older students, I heard all about them. And my youngest sister goes to them full of all the alcohol and activities and sometimes lies to my parents to go different places and all the storybook high school things.

Sometimes when I see and read and hear about other people melting down, I think of all the times I wish I could have but I couldn’t because I was responsible and it was NOT ALLOWED. Where you have to wait to wait to wait until you get home because you are driving or IN PUBLIC or I can’t think of any of the top of my head. I can’t think of reasons why I am not more visibly noticeably autistic.

I’m usually in somewhat vague denial of it.

I went to small schools. (Catholic schools–I would have gone anyway.) Uniforms. I could learn the names of 60 other kids when only two or three names changed from year to year. Eventually. I think by third or fourth grade I knew most of them.

Everyone was decent mostly.

I went to plays and dance recitals. I had to go because where else would I have gone? But I also don’t think I ever—well, ever is not true—I very seldom had to go to places that made me uncomfortable. My parents were good about that when they were able to. And they usually were able to. But mostly, we didn’t go to those places. Sometimes there were sister’s soccer parties and such, but those events didn’t really start in loud until I was old enough to stay alone. Benefits of being the oldest. There was a brief period of time maybe where they were starting to get loud but that was also when my youngest sister was born so then we didn’t go to things that babies couldn’t go to also. And then I was old enough to stay home alone.

But I also don’t remember being a small child, or at least not well, so who knows what they worked out then or when. (They do, I’m sure). I suppose I could ask some.

But I was my first parents child so they didn’t know what was normal and not, so they assumed everything I did was normal.

So I got my autistic normal imposed on my siblings, slightly, slightly, slightly.

I wonder what it’s like to have that. Introverted autistic normal imposed on extraverted siblings. Still slightly brainweird, though. Our whole family is. At least my mom’s side. Smatterings of dyslexia gathered in there, with various (sometimes un)diagnosed ADHD and  definitely autistic traits. Brainweird.

(It sounds like a chicken looks.)

And I’ve been thinking so much about family and differences because of getting married and how I will have different family things to join and be part of in a family that hasn’t been shaped and adjusted to fit our pecularities like my cousins and my mom’s side, where there are quiet rooms at Christmas for breaks and no one minds if you disappear for a few hours.

I didn’t realize how weird we were until all the things we went to with boyfriend (now husband). (And sometimes not until after complaining about how their family does X or doesn’t do Y to another friend who tells me her family also does X and doesn’t do Y and who is generally in touch with the scope of things).

Inconclusive.

normal normal normal normal?

Oh hey, maybe it’s like me being a person with specific characteristics and preferences and needs affected my family as much as the other people in my family also being different people with different characteristics and preferences and needs.


*Also because many of them are bad in general. And I don’t really remember much about this show TBH but I do strongly remember this feeling of “I must be helpful”. ALSO THIS IS VERY MUCH NOT A DISCUSSION ABOUT AUTISTIC PORTRAYALS IN TELEVISION. It’s just that this was a starting off point.

**This is a detail that has changed. I am much more comfortable around boys and men in general than I was however many years ago that I wrote this.

Advertisements

Coordination is a thing?

I’m going through and rescuing some old drafts that got lost in the draft box, so hopefully for the next couple weeks I’ll be posting more frequently. Some of the details might be a bit out of date, though. Also, some of these posts might be a little bit silly and maybe not my best writing.

 

I have horrible proprioception. I used to think it was depth perception, but maybe it is actually proprioception. But I have always been excellent at climbing things. I scared all the other moms when I would climb to the top of everything in Mommy&Me classes and just lie on the poles. I’ve always climbed trees (except now… it is a lot harder to find trees to climb in a city because mostly they are other people’s trees and you are supposed to ask for permission before climbing other people’s trees.). Of course, I didn’t run until after my younger sister learned how to run.

I have excellent fine motor skills. I can inject DNA into a single-celled embryo and dissect very tiny glands from larvae. This requires really intense hand-eye coordination because the forces and tissues are so small and delicate, you don’t get any sensory feedback so you have to learn to judge your movements by the microscope and without any touch response. When I rotated in a neuro lab, the first chick brain I dissected was perfectly dissected (even though they had set aside many brains for me to learn how to mangle the first few). I also do some other very complicated and rare embryo manipulations that would definitely be identifying because VERY FEW labs do it and I am pretty darn good at it, and I picked it up super quickly.

But I also fell down the stairs daily at high school, walked into the counter daily at home, walked into walls regularly. But maybe that was because I insisted on wearing shows two sizes too large in high school because I hated shoes that touched my toes. I haven’t fallen down stairs in years. I also tend to struggle A LOT with doors, specifically with opening them but also with walking through them instead of into them.

Take a deep breath

I remember when I really learned how to handle my emotions. As in, the point when I was able to figure out how not to burst into tears over a stubbed toe. Before, I was prone to bursting into tears at these (relatively) small things.While I would burst into tears at minor injuries, I knew that I shouldn’t be upset. I knew it was a small injury and not a big thing. I knew that it would stop hurting soon. I just couldn’t stop myself from crumpling and crying. But then at some point, it just clicked. I was able to take a deep breath and walk it off. And after a few seconds, the stubbed toe or the skinned knee didn’t hurt any more and I was fine.

Part of the reason I remember this so well is because it definitely didn’t really develop until I was in college.

I still don’t really know why or how this change happened. I just know that all of a sudden, I was able to take that deep breath and pause for a second with a stubbed toe. And really, once you can do that, it makes it hurt so much less.

But before that, every time that someone told me to calm down, it didn’t work. When people told me to take a deep breath, to walk things off, it did not make any sense. I literally could not comprehend what people were saying or how it made any sense. I just didn’t have the tools in my brain to take a breath and make things stop hurting.

Some things just take time. Some things just happen late. Some things will probably never happen.

In the details and routines

Not everyone* is built for the story of adventures or super-mega-career-intensity told to us** that we should be doing (or maybe I’m spending too much time on the internet and not enough time around traditional old ladies who seem to tell people in stories and movies to settle down and this is a fake problem I’m creating for myself inside my head). Sometimes all we*** want is somewhere safe and familiar to base ourselves in. What is wrong with wanting to settle down? With wanting to put down roots and settle into comfortable routines of life? (Nothing. The answer is nothing.)
I was born too practical a person for reckless adventure. If I won a million dollars, even as a small child, my plan was to pay for my college education and then for my sisters. Now, I would add probably a house for myself and pay off my loans and my husband’s loans.**** I would never go vaguely off and adventuring. I’m not comfortable in new places (alone) or around new people. I like the familiar. I like knowing where my meals are going to come from next week and having all the ingredients and recipes for them prepared ahead of time. All these plans and routines make me HAPPY.
I’ve always been looking for reasonable solutions. There’s love in the details and negotiations of a slow and steady moving relationship. I have the letters saved from when my husband and I were dating and discussing if we wanted to take the next step (of kissing). It was slow and methodical and reasoned out. I can go back and look at them and while it first lets me know how young we both were, I can see the care and concern in each carefully typed letter I have folded into envelopes in the shoebox in my nightstand. There’s care and concern and thought put into these letters that have been outlines.
As we settle into routines of being married, it is safer and happier. The first week back was not as great, with jobs and schedules. There was a person in my place, where it had just been me and my dog before. And the dog listens to me (mostly) and doesn’t talk ever. I would come home from work to happy silence. I don’t like change, even when it’s ultimately good change.
But now as we have morning routines (more) figured out and are falling into patterns of life, it’s getting better and easier. Now that each moment of the day isn’t something new, there is time to think about the details of what is going on. Husbands will accommodate quirks that you can’t ask of roommates—I don’t like not knowing when people will be at my house. There’s love in the “at the bus stop” texts so that I have time to prepare. There’s love in the details when we count backwards to plan the timeline of a weekend day. Or in the weekly planning of meals where we trade each others dislikes to find meals we both will enjoy. Or in going through the Simpson’s episodes slowly, every few nights getting to one.

We are falling into patterns now and it’s comfortable and safe and good. Once you have a pattern and a base, then you can work towards something, because you are safe and can concentrate energy on doing things besides just surviving.

*aka me
**once again, maybe just me
***Pronouns are hard and I don’t like using first-person pronouns even when it is clearly appropriate.
****Also, now I know that a million dollars isn’t nearly as large of a sum of money as I thought, but I think I’d still be able to get a fair chunk of things out of the way. Or maybe the amount of money will increase in this hypothetical situation I am creating for myself.

Autistic People and Imagination

When they say autistic people don’t have imagination and don’t engage in imaginative play, what do they mean? I knew I had imagination, and that was one of the biggest things holding me back from thinking I could be autistic, because that was something always stated and listed and formalized. Autistic people don’t have imagination.

I never really was into playing school or house, like other kids were (why would you be a grown-up when you could be a HORSE?). But I would play all sorts of imaginative games with my cousins and my sister and myself.

I played Orphan Kittens. We played all sorts of games with our stuffed animals and model horses. Admittedly, we often wrote out the scripts before and they were usually similar patterns that happened… but that is a trait common to children. (You notice it when you babysit or have younger siblings or really just encounter things like that).

We played Lord of the Rings and went on quests where grapefruits or a pomegranate were palantir. There was a game where we were princesses that also involved horses and we would switch roles between them back and forth. We also played a lot of complicated games involving chickens and occasionally my cousin’s goat which we were all afraid of, but those were not always imaginative games–I don’t really remember the point of them, so they are a bit irrelevant.

In 4th grade, I made snail houses and fairy houses and for one brief moment, I was a trendsetter when everyone else in 4th grade also made “fairy friends”. (Although I was a bit upset that they treated it as a game, because I at least half–probably more–believed in it). I played games where the swings were the way to outer space and the only way back was to go down the slides. I was good at coming up with games and stories, so as long as everyone else was still young enough to play stories and pretend at lunch, I had company. They grew out of it earlier, so I switched to books.

And I lived in stories and books (and still do) despite the best efforts of literature analysis to beat that love out of me. And I still half-live in a world of stories, although I read much less than my high school minimum of a book a day. (I have a lot more reading to do of other materials than I did in high school.) (Also, I don’t like going new places myself which is why I haven’t been yet to the [non-campus] library even though I love libraries.)

Anyway, on any given day, I’m about 80% sure I’m autistic and I’ve had official professional people agree with me, so I just wanted to summarize this to say that autistic people can be creative too and that is a silly requirement to say they can’t.

telling autistic

Some more choosing-a-lab/grad-school-struggles randomly and when that happens I am not very good at writing at paragraphs or capitalizing or even really going back and editing it but also because I am still sort of mush on this topic and ideas right now. So sorry about that because I know lack of capitalization and even also inconsistent capitalization and punctuation can be distressing to read to me at least so here’s a heads up that it is all sorta meltymushy.

one problem i’ve found that I have with autism
and why i don’t want to tell people
or can’t

because for the longest time i would read stories of kids with autism–because its almost always kids in the stories
and i thought it couldn’t be real
because they sounded just like me–a bit younger often, and with a tendency to be boys—and I was not a boy no way who knows what boys were up to or how I could related to them
so i thought most of it was a new made-up craze
that things were overconcerned and overpathologized when it was just people being people

of course
eventually i realized that actually in these stories these kids who couldn’t really have something Named, couldn’t really all be that different
because it was things I did
things my family did
things I didn’t think at all were unusual because they were woven into my everyday life

that these things were not actual Things That Everyone Does
but rather, unusually unique to me and occasionally family members
and this group of autistic

I would keep reading the stories before I realized
because I recognized something similar
but also reading them trying to figure out what exactly it was that made these kids different

sometimes jealous of the more-overtly-things that meant they didn’t have to talk to people
or somehow were allowed to do things in public I knew that were not allowed but they were ok for them
not knowing how amazingly lucky and accepting my life had been–which is probably one big WHY that no one noticed things about me

and now i’m struggling with some things in school
contemplating telling people to see if that would help
—by people i mean official school people—
(although i don’t know who i would tell since i am not even in a lab)
but I’m afraid they won’t believe me

because just like my family was slow to believe when i told (some of) them
because it was just things that everyone did
i live in a world of science and scientists
and a lot a lot a lot of the things I do are not all that uncommon–at least compared to the general population
there is at least one professor who I am almost positive (upwards of 90%) is autistic too
and there are others with hints
and so i feel like it would be less believed
because the straits stand out less–which is sometimes good
but makes asking for help harder

—well, that and the fact that I don’t have any actual official paperwork of any sort saying i was autistic. probably a flaw at that time that i should have predicted coming up in the future

maybe when i get in a lab officially
i will eventually tell that PI
and help figure out solutions

In general, i’m not very good at telling people
i’ve told one person who asked directly
i have told 2 close friends
i told boyfriend

i wish people would ask directly
that is why i didn’t even tell the therapist/pysch person
because it didn’t come up in any of the questions she asked me

but i think it is very rare that people will do that
it has only happened once

so i probably shouldn’t hope for that

Gateway friends

In high school, I had one best friend, L. We had all our classes together, except I took French and she took Spanish. We sat in the hallways studying together before school, we read books together at breaks and at lunch. When we hung out on weekends, we would hang out at her house (or sometimes at mine, but usually at hers). I had other friends, too, but I never hung out with them without L. It just wasn’t and interaction thing that I did.

On days that L. did not come to school (which was very rare, but happened a few times), I was completely lost. The times I knew she wasn’t going to be there (like college visits) were fine; I could plan ahead and bring books to read or work on math or read for class during breaks. I could find places to sit by myself instead of wandering to find her. When she was unexpectedly not there, I struggled. I would wander around and around, trying to find her. Even if it was after a class that I had that she was usually in, so I knew she wasn’t at school today, I still would look for her. I wouldn’t be sure what to do.

Then we graduated high school, and L. went to the Naval Academy, and then went to (is in) med school and got married (last week!). She’s always been bad at non-in-person-communication, so we see each other a few times a year, and I send lots of emails, but that’s all. It’s great to see her, but she isn’t the friend that I center my life around anymore, because our lives are so different.

In college, I had another friend. We actually were acquaintances in high school, in the small group of girls that took all the same AP classes. C and I both majored in the same thing. Almost all of the friends I met in college (with boyfriend being a notable exception), I met through her. Including two other girls that I became almost as close of friends with. They answered my questions and were in many of my classes with me. They were lab partners and fellow TAs. I always had one of them to rely on in pretty much any social situation I was in. They were the friends I went on the Disneyworld trip which was my first big traveling-without-adults-trip and were safe when I melted down in Walmart. C. was my friend with whom I travelled through Europe for 6 weeks.

C. is much better at internetting than L, so we do talk really frequently. There is pretty much a constant thread of communication going. (I talk to the other girls frequently, too, but not quite as much.) But she isn’t physically here, she is no longer participating in basically all my interactions ever. I don’t have the same person (and set of persons) in all parts of my life.

I have always had one (or a small group of) close friend(s) who I did everything with. Social and school. I’m lost right now, without my gateway friend. I don’t have one to be safe. For me to follow around as I get used to the new social environment. To have in all my classes (I don’t really have anymore classes). To eat with and sit with and talk with. To be my buffer from the world.

Boyfriend does a lot of this, when he is able to. But he lives a 40 minute drive away right now. He has his own work and isn’t really integrated into this social group. They are friendly with him, just like C. and co were friendly to him. But he is usually not here.

I have to remember a few things. That I have only been here a year, and it took me a year to meet L. It took me a year before I was really close friends with C. That it isn’t fair to rely on one person to be a buffer between me and the world, to help me feel safe and facilitate social interactions. I find grad school weird because it is a combination of school and a job, it seems, where you sort of still have your main social circle being other students, though.

But I miss having one close friend who shared every part or almost every part of my day-to-day life. I miss having someone safe who is reliably around at school and at social activities.