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 Some of the details might be a bit out of date and sometimes the topics are a little bit silly.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.

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Different colored chicken eggs

Ordinary-ness and happiness

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.


Quiet happy lives

That’s what I really want to live. I want to find a nice patch of land near my parents (or at least within 50 miles or so) and live a quiet happy life. I want to have kids and dogs and some chickens running around in the yard in a nice coyote-proof coop.

I like traveling, but never alone. I like having a home base and a solid, reliable life to return to. I like following the rules and always having a stable life. I think I would be perfectly happy living a quiet happy life. I will save up my money and put some away into retirement, which I have done starting with my babysitting money (I was a very financially responsible 14 year old who also had no real expenses). I want to spend the time building a solid foundation and structures of my life.
And it is silly for me to think that this isn’t absolutely, positively accepted. It’s presumably the basis that people say they are rebelling from or rejecting when they are rejecting things?
Idk
internet stuff

I guess I come to the same conclusion about this now. Internet stuff. Also, maybe something about what people expect of you in your 20s to be wild and crazy. But I have never been wild and crazy so there’s no real reason to think I’d start just because I’m in my 20s.

Loud Places

I have very good hearing in general. I hear the buzz of the cable boxes when they are turned on and the tv is not, even several rooms away. I could hear the click in my old alarm clock before it turned on to the ratio set to the lowest volume static I could set it to and still hear if I sat up in my bed. I grew up in a quiet place and it took me a long time to get used to the city. It was much better once I moved away from the hospital. My new apartment still has noises, but it’s the quiet steady noise of the cars on a busy almost-highway. It’s consistent and easier to get used to. When I come home now, I can feel the silence in my ears as they expand without the noise to push them back in. I was used to the silence.

I generally can’t tune out things selectively. I can tune out the world when I’m reading or focusing, but I can’t tune into just the conversation I am listening to while not hearing all the other ones going around me. Buses and restaurants make conversations more difficult, but it can still be enjoyable. It takes effort to sift through all the words and assign them to the different conversations, but it is always how I have talked that way. It can be a problem when the group of new moms two tables down from us at a crowded restaurant are talking in more detail than I would like to hear about the processes by which they obtained their babies. I can tune them out, but not if I would also like to continue the conversation I am having with boyfriend. Boyfriend, on the other hand, has no idea of this conversation until I bring it up after dinner. Otherwise, I like going to restaurants and delicious food is often worth the effort of sifting conversations.

What does loud noise sound like? Does it sound like everything, just louder? Like the difference in talking volumes when you are trying to talk to someone in a library compared to talking to someone across a room? I want to know if other people can feel loudness, can hear it as a different sound. In crowded places, I can feel the conversations as they move around the room. It made sense to me, that you could feel sound, because sound is waves in the air. Even people with not-sensitive hearing can feel the very-loud-music of speakers from your inconsiderate neighbors. You can see it move sand in science experiments.

In loud places, even not-rock-concert-loud places (because I don’t go to places that loud!) but twenty-or-so-people-having-a-few-separate-conversations-in-a-room-loud places, the buzzing starts. It layers over the words and conversations that people are having. My ears will buzz and pop and bubble a little. It doesn’t hurt, but as it gets louder or as I am there for more time, the words will fade into the buzzing and I won’t be able to understand really much or most of what is going on. Even if I’m otherwise fine, and not overloaded or headed towards meltdowns, at some point, the buzzing gets loud enough that the conversations can’t be filtered and sorted out. This happens in family gatherings (we have large families) where I’m perfectly happy to keep sitting the night away while people chat around me. I might get out a book, or find a quiet corner for a while until the buzzing goes away if I want to come back and talk.

Autistic Wedding Planning

Image is of an engagement ring with a blue stone. I have doodled around it and wrote the word plan underneath it.
Hi everyone! So there aren’t very many resources for planning a wedding if you are autistic. Like none. Google gives you pretty much nothing. And since I’m actively involved in this, it’s something I’m thinking about. And it was really becoming rather frustrating and leading to general panicky life issues. So I wrote a question/submission thing to a wedding planning website/other life things that I’m a big fan of just in general (like really, though, I like A Practical Wedding and actually was reading it for discussions of life stuff occasionally before I even started thinking about weddings… like years ago). And they also decided to print/answer it. (And also had helpful, specific answers to things I was individually concerned of.
So that’s pretty awesome. Anyway, if you want to read it…

Also, they were super cool in the editing process about changing things they wrote about “a person with autism” to “an autistic person” and also about changing the link for more general autism information from Autism Speaks to ASAN when I brought that up. So added points for that.

puns and scripts

I use tumblr for a few, very specific purposes. To look at pictures of baby animals and to find puns and other bad jokes. I maybe started it as an extension of this blog and definitely do have a bit of autistic people I like to read on there*, but quite honestly, it is mostly puppies. Today I found this piece of beauty.
one fifth two fifth red fifth blue fifth
So I was gallivanting along on tumblr and found this delightful little thing.
And I really truly love it.
Puns make my brain happy.  I don’t necessarily understand the puns all at once, but once I work it through, I love them. They are just so clever, how they can turn around the meaning of the words. Once the trick is all worked out, it is exciting. There is an answer, a definite answer. There is a reason why they are funny.

Sometimes I can’t figure out puns, and I hate that, because I haven’t found the answer.

And this puns was based off of one of my scripts. One of my conversation fillers. One of the things that I can repeat when I need a break or when I need words but I don’t have them yet. When I want to talk, but there aren’t really words yet or I don’t have anything specific to say. One of my ready-to-go, preformed, pre-made words.

And it had numbers in it, too.

So it was like the universe had combined to create this magical combination of all the things that make my brain happy and safe into one gigantic, perfect, inside joke.

Which is wonderful.

~~~
*Which is something I feel irrationally guilty, or at least I think irrationally guilty for, that I don’t use it more for that. That it isn’t a serious real thing where I write about issues and all that. But mostly I am ok with it. Because I really like bad jokes and pictures of puppies.

~~~

P.S. I am back to the Midwest now and have much recovered from the bit of a mess I was in when I left. So that is a good thing. Maybe I will make some more thoughtful-insightful/autism related posts soon. I have a lot of half formed ones floating around.

Blogging Belonging

Dear Autistic friends,

You are all wonderful.
Thank you so much for making a place I fit in.
I love the internet.

I’ve usually had some places where I’ve felt like I’ve fit in. I am from a very close extended family, where most of the cousins are within a five or so year age range. And there’s a fair number of us, and we’re pretty strange (#MySemiAutisticFamily is what boyfriend calls it to differentiate from the other very normal apparently side of the family). We all grouped together and played the strange games kids come up with when they have little adult supervision (or think they have, anyway. Our parents were pretty sneaky.) So I’ve always felt like I’ve belonged with these cousins.

But eventually you enter the real world, where you sometimes (or closer to almost-always) have to interact with people that you are not related to. And that is when I started to realize that things were different. And as my cousins have grown up, and dispersed to different jobs and countries and medical schools and places without reliable internet, and developed lives outside of family, it becomes more and more necessary to talk to people you are not related to.

But the great thing about cousins* is that even when you haven’t seen each other in months or years, once you put yourselves together again, it is just the same as the last time you spent a week straight together hiking and going to Trader Joe’s.

And as my life grew less and less structured, and I had to spend more and more time away from family, as I moved into high school and college, as I had more and more responsibilities and more and more interactions and more and more strangers, I got more and more alone. I started to realize that I was different. And that it wasn’t always the good different (I always knew I was better than a lot of people at math for instance). I started to realize that things that were incredibly difficult for me were sometimes things didn’t even realize they had to do.

I got more and more lost.

Even though I made some amazing friends, there was still something missing. My other friends seemed to like each other more, because they were always hanging out (eventually I learned the formula for initiating hanging out, unfortunately just in time for graduation).

And then I figured out (or started to figure out) this whole autism thing. And it’s like finding a whole new branch of cousins. People who understand me, who have the same stories and history. Even though there are so many ways and differences in life and life circumstances. There was still the sense of almost easy familiarity that I have with my cousins.

And it has made my life better. I still have struggles, but I have a place of belonging. I have a place with answers. A whole new place to turn for advice.

So,

Internet people, thank you.
Thank you for being here and being there and being so similar.

Blogs are weird things, where we share secrets with the whole world and make friends with strangers that we have never seen, who know things about us maybe even our closest friends don’t know. I was initially skeptical.

Thank you to E. at The Third Glance, where I first realized I could be autistic because I could see myself in almost everything she wrote. When I first realized that there might be a category for my different, that maybe it was an actual difference, not just a character flaw.Thank you to autisticook for adding me to her list of autistic bloggers. That was AMAZINGLY INCREDIBLE  Because it was belonging and sort of the first confirmation that other people acknowledged me as autistic. That I could join the internet community. Thank your Nattily at Notes on Crazy for all her helpful app knowledge and suggestions and helpful hints to make life better.

And there are so many other people.

So many amazing people.

And fitting in and talking and community and happiness.

Thank you, semi-strangers that I met on the internet.

You are amazing and you have made my life so much better.

Sincerely,
Alana

~~~
* I want to make it clear here that this is probably not actually a generalizeable statement. It is really refering specifically to my cousins, although I do know other people who also have this experience.

What do you want to do?

When people ask “what do you want to do,”I hear “what do I want to do? Guess. Then tell me.” Because you have to figure out what they want you to do. Or at least that is what I think when I hear that.

search and pick and think of what you know about them
come up with options that they are ok with
or that you think might be good
ask them and then try and see what their reactions are
then pick the one they seemed to react more positively to
give them options

never choose outright

always quiet
always waiting and watching

be quiet
don’t upset
don’t make people do things for you
don’t make people do things they don’t want

if someone is to be inconvenienced or unhappy, it should be me

I was talking with boyfriend. He asks me what I want to do rather frequently, since we spend a fair amount of time together. One day I finally got stressed enough about it that I told him this. Why did he keep asking me what I wanted to do? Wouldn’t it just be easier to tell me what he wants us to do, instead of making me guess something that would keep him happy?

Nope.

No.

When he asks me what do I want to do
it isn’t a trick
it isn’t a trap

It really, honestly 100% means what do I want to do.

I don’t have to guess what he wants to do.

I get to choose.

There is no good reason for me thinking it is a trick or a trap. Boyfriend doesn’t do that sort of thing. The only thing he ever tricks me into is saying “I love you more” so that he can say “I love you most” and win. (But that is ok.) Or at chess. But that is also sort of the point of chess, so that is more open deception, because you know people are trying to trick you.

Apparently, this is a relatively universal custom. “What do you want to do” often means just that. Literally. I am not sure where Miss Literal Girl me managed to pick up “What do you want to do?” meaning the opposite. (Although I suppose some people are awful passive-aggressive people, who actually do mean the opposite, but boyfriend isn’t and most of my family isn’t and my close friends aren’t.)

Part of this is guest-hospitality-customs. When people are over at my place, they are the guest, so they get to choose. Part of being the host is inconveniencing yourself for your guest.* But I don’t just do this with guests. I do this all the time. Anytime someone asks me what do I want to do, I try and figure out the answer. What is it that they want to do.

I think part of it is probably me being confused with specific versus general cases at some point that I don’t really remember. That tends to happen with me and my autistic brain. 
Part of it is me valuing other people’s happiness over my own. And my extremely strong aversion to disappointing people. I would rather do something I dislike doing than disappoint someone, because I am going to be unhappy either way, so they might as well be happy, is my reasoning. But I also think things will disappoint people far, far more than they do it real life. For example, me choosing to watch Princess Bride over some other movie probably wouldn’t be a big disappointment. (Of course that is a bad example, because Princess Bride is always the answer.)
Part of it is probably older-sister-stuff, where a lot of the time it was just easier to do what the other one wanted. So parts of me are just programmed into considering what other people want to do before I make decisions. (Which is totally unfortunate because somehow that missed my sisters, especially the youngest one.)

And then there is also a great big chunk of “this is the way I have always answered ‘what do you want to do questions’ and I certainly don’t know what I actually want to do” because there are so many possibilities it can be a bit overwhelming” and “often I don’t actually know what I want to do.”

Bleh.

Mess mess mess.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
(Although that is a whole different topic, where you have to invite people to stay with you and let them stay with you, but on the plus side, you can also invite yourself to stay with them at any time.  For instance, when I travelled through Europe this summer, I visited and stayed with several family members I had never met. I just emailed them when I would be in town and let them know. And the European ones do the same when they come to the US. Because that is what you are supposed to do. You will never hear the end of it if you DIDN’T let people stay with you, or went through part of the country and didn’t visit someone. My mom still has one [second-or-further] cousin upset that she didn’t visit him when she was only 2 hours away in Canada for a competition with my sister.)