Tuesday, July 30, 2019

Movement things are weird

I’m pondering this on my fourth aikido-versary. But movement things are weird.

I did gymnastics for many years of my own volition. Indeed, I did gymnastics against the express wishes of my mother. It wasn’t easy. New skills were very rarely easy. But I learned them, a lot of them, and by the time I was forced to retire by illness (and retire from my miraculous comeback by injury), I was quite good.

After my foot healed, I sought a way to fill the gymnastics shaped hole in my heart and life. I’m one of those people who needs a lot of physical activity and the kind of sensory input you only get from physical activity to be happy, healthy, or even vaguely able to deal. 

One friend was an enthusiastic evangelist for swing dancing, specifically how much I’d love it. Another was a quieter, less direct promoter of aikido as a possible fit.

Dojo membership trends expensive. Going to a dance is cheap. I tried swing dancing first.

My friend was very much correct: I enjoyed swing dancing. It used movements I was comfortable with from gymnastics and made use of my inability to get dizzy, but it added something: working with a partner. In partner dancing, one person leads and the other follows. I had to learn how to do these things--first how to tell what partner was leading me to do, then eventually I learned to lead too, how to tell a partner what I wanted them to do. I had to learn to keep my body safe from uncontrolled partners, and also how not to anticipate a lead. And I had to learn how to be a controlled partner, how to set distance, how to respect distance, how to communicate clearly and observe partner’s ability to achieve different moves. And the planning. Leading is a lot.

But I learned to do the things. I was never a stellar lead. I was a pretty good follow. Unfortunately swing dancers enjoy a lot of bigotry, so it wasn’t an environment I could really stay in (more about that on my personal blog, this isn’t the post for that). I learned how to move while a partner was already moving during my time as a dancer.

After leaving dance and a period of time with no outlet (during which I was pretty awful to live with, sorry y’all) I tried aikido.

And I liked it.

But this is where it gets interesting, at least to me:

  1. The style I ended up in combines the pedantry of gymnastics and the listen to your partner of swing dance and smushes them together.
  2. Had I tried aikido before dance it would have been much harder. You are listening to your partner to either fall or make them fall. That’s a lot more complex psychologically for me than just making a dance. Now, my teachers are absolutely amazing and I’m...uh...driven is a nice word for it, so I would have still learned. But several aspects would have been on a much steeper curve.
  3. Ending up in the school and style that is best for me was absolutely luck.
  4. My amazing teachers in the style that was made for people who brain and body like me has given me the background to visit other schools that do things much differently and understand what I am looking at.

So that last part is actually kind of a big deal. Allow me to explain.

A couple of months after starting training, I visited my friend’s dojo. It’s their fault I started training, after all, I should spread out the frustration of attempting to teach me. Everyone was very kind, but I struggled mightily. The format was different than I was used to, and I was accustomed to being given exact angles for things and talked through the first couple attempts of a technique. This was not that. It was much more “figure it out with your partner” and “move your feet as much as you need to”. I cannot stress enough that the students and teachers were very kind and patient, but I was a bit of a mess. I didn’t have the base layer to succeed in that kind of environment. It wasn’t particularly accessible, no matter how kind and patient and welcoming everyone was.

A year or 2 after that I visited a dojo that is a style closely related to mine. That was much easier. They still did some things differently, but the format of class was familiar and they gave me exact angles. Again, everyone was very kind and welcoming (aikido people tend to be in my experience) but it took a lot less patience on their part. It was a new place and new people, thus scary, but it was cognitively accessible. I had the foundations.

But the background built. A few months back I took a class at another dojo similar to my friend’s. The format was still very different than I am used to. It was still people I did not know. They still weren’t giving me the instructions I am accustomed to. But I had enough background built in, grown through trying things communicated in a K friendly way, to see what they were asking me to do. It was still hard. I will never move in a go with the flow, just turn as far as you need to, kind of way. But I didn’t embarrass myself and my teachers and everyone who has ever tried to teach me to do anything with my body. It was still less accessible, but with the years of training and learning to use my body, I could move in that environment with a manageable amount of difficulty. 

If you had told me after the class I took with my friend that in a few years I’d be able to learn something (as opposed to ‘not hurt myself or someone else’) in a class with that format I wouldn’t have believed you. Jumping falls? Seemed attainable, because they’re related to something I already could do. Footwork without names? Not so much. Footwork without names that is open ended because you have to feel what someone else is doing? Absolutely not. But I could. Eventually.

Kinesthetic knowledge is just really interesting. And people don’t think about building a base for it the way they think about learning basic math concepts before advanced math concepts, or the alphabet before learning to read, or thousands of other academic examples. Hundreds of people every day access aikido environments that I struggled in without a decade of gymnastics, several years of dance, and 3 years of more step by step aikido training first. But some of us do need to learn the components step by step first, and that’s ok. I’m never going to want to transition to a place where that’s not the norm, even if I can visit. It’s not as easefully accessible to me. But it did help me learn to use my body in more freeform environments, and that’s super cool to me. Because kinesthetic knowledge is underappreciated yet super awesome.

Wednesday, February 28, 2018

Call for guest post submissions!

We Are Like Your Child is seeking new guest post submissions for our main blog page!  While we have a team of regular contributors, we are always looking to share guest work and new perspectives!

WALYC is a group blog dedicated to countering the misunderstanding that autism/disability acceptance means pretending that our struggles and challenges aren’t real or significant.  This is where we talk about what our real challenges are, and how we strategize, problem solve, adapt, and work with them to build satisfying, sustainable lives as disabled people.  Our values are that it’s okay to be disabled, it’s okay to be disabled and like yourself, and that there are many different and valid ways to be “successful” as an autistic and disabled person that don’t involve “overcoming” autism, recovery, or indistinguishability.

Some possible topics include, but are by no means limited to:  Executive functioning, sleep issues, movement/motor planning challenges, sensory and auditory processing issues, navigating relationships, sexuality, gender, parenthood, higher education, or employment as an autistic person, issues with seeking healthcare; code-switching, scripting, and other ways of navigating language, AAC, meltdown prevention/recovery, strategies for academic success and seeking formal or informal accommodations, housing issues, financial issues, autism and pregnancy/childbirth, etc.

-Author must be autistic or disabled, and writing about your own experiences

-We are especially interested in sharing the work of autistic people of color, non-speaking people and AAC users

-Guest posts are uncompensated at this time; WALYC is an all-volunteer collaboration.

-Submissions should be e-mailed as a Word attachment to wearelikeyourchild@gmail.com, or to the inbox of our Facebook page, with a short note introducing yourself.  We look forward to hearing from you!

Wednesday, February 15, 2017

Sometimes it's not me. It's you.

[Content note:  This is ranty, angrier than what's usually published here, and contains profanity.]
This isn’t what [SLAM] I wanted to be writing today.
It’s not even [SLAM] halfway through my day, and I am completely fucking fed up with non-autistic people’s utter care[SLAM]lessness about the world around them.
I’m [SLAM] sitting in a coffee shop that I normally like a lot.  [SLAM]
I nearly always have to leave my apartment and go out to a café in order to really get anything done—there’s [SLAM] too much available [SLAM] distraction in my apartment between the internet and all my books and art supplies and a hundred things that need doing around the house at home.  So I go out.
It’s [SLAM] Sunday, which makes it harder.  Places will be more crowded.  Some don't allow computers on weekends.  My usual favorites won’t [SLAM] have seats at all, and weekend crowds (containing more families and small children) are [SLAM] louder and [SLAM] rowdier than weekday ones (who are mostly students and freelance writers).  It’s also spitting freezing rain outside, so I don’t want [SLAM] to walk very far, and also I need to eat before work, so I need to be able to get back in time to do that.
This place is right off a subway stop and almost always has seats even on weekends even though it’s on the smaller side.
Something is wrong with the pneumatic [SLAM] thingamajig that controls the front door’s opening and closing, though, and if someone opens it and then just lets it go at the outside of its arc instead of easing it closed, it slams with a painful metallic [SLAM].
There’s a sign on both [SLAM] sides of the door asking patrons to be careful with it, but about 75% of [SLAM] them don’t read it.  Or maybe they do but they don’t [SLAM] think it applies to them personally.  Or they [SLAM] aren’t taking the moment it would require to integrate the [SLAM] verbal information contained in the sign with the physical [SLAM] information conveyed by the fact that [SLAM] the resistance just feels wrong when you pull the [SLAM] door open in order to conclude that they need to be careful about how [SLAM] they close the door...to glean the kind of physical information from their environment that I have to be doing constantly.   [SLAM]
I don’t know.
I start trying [SLAM] to warn people who I see enter and let go of the door, but most of them still don’t understand until it’s too late if they hear and understand me at all.
The barista starts trying to warn people, too, with [SLAM] only a slightly improved rate of success.
Finally he sends another employee to try to jerry-rig a temporary fix. 
It doesn’t [SLAM] work.
They try again about 15 minutes later.
No luck.
Every [SLAM] time it seems like people are getting the hang of it and I start to relax, [SLAM].
Within a [SLAM] few minutes, my head hurts, my ears hurt, my brain feels like it’s bleeding, my eyes hurt, my hands hurt, and every nerve in my body stands on end every [SLAM] time somebody reaches for the door handle.
I’m reading, or trying [SLAM] to, a book that I’m really enjoying, by an author who’s a particular favorite of mine, and I resent [SLAM] bottomlessly that my experience of it, my ability to sink [SLAM] myself [SLAM] into [SLAM] the rhythms of [SLAM] his words, is being fractured like this.     [SLAM]
Ironically, it’s a book [SLAM] about disability and cure culture.
A woman [SLAM] waiting for her drink knocks a ceramic mug off of its counter display and it falls to the tile floor and {CRASH} shatters.
Yeah, I could “just go somewhere [SLAM] else,” requiring, at this point, a long walk in the freezing rain, for no guarantee there’s even a seat [SLAM] free in another café in all of upper Manhattan or that there [SLAM] won’t just [SLAM] be a different or worse issue wherever I wind up, or that I don’t just end up going [SLAM] home, whereupon I have wasted my whole entire [SLAM] fucking afternoon in transitioning.
            -Putting on/taking off boots, scarf, gloves, coat, hat, backpack, headphones
            -Make sure I have keys and Metrocard and chapstick
            -Leaving/arriving/getting on the train/getting off the train/coming in/negotiating enough room  to sit/sitting down/getting settled/unpacking/packing up to leave
            -From misery to misery, from getting nothing done to getting nothing done to getting my focus shattered again and again and again until even though I’ve had seven whole hours between waking up today and having to be at work, I have nothing to show for it except for a headache that neither Advil nor alcohol will relieve and wet jeans, cold feet, a short temper, exhaustion, and             inability to control my tone of voice which will now only be held against me, because I still have to go to work after this.
Yes, I have ear[SLAM]plugs.  Firing range grade earplugs, as it happens.  They muffle the sound of [SLAM] the continuous door-slamming somewhat, but not the physical sensation [SLAM] of it, or the randomness, which are equally [SLAM] debilitating factors.
My day is going to [SLAM] be ruined even though I have done nothing wrong and made no mistakes here.  

We use this blog to talk about our problem-solving, our resilience, our creativity, our self-accommodation and how those things make us successful by our own standards, but, like, sometimes there’s just no way around this:
I need you to be more careful.
I need you to pay more attention to the world around you and how it works.
I need you to watch your volume and where you are in space.
I need you to stop fucking with knobs on sound systems you don’t understand.
I need you to stop slamming shit and breaking shit and dropping shit and dragging furniture and not watching where you’re going.
This cannot, cannot, always be on me alone.  That I can do everything right, take every precaution to protect myself, short of just never leaving my room (and then I would doubtless be told that I was “letting my diagnosis limit me” or “using it as an excuse”), and still wind up hurt, sick, melting down, my ability to function for the rest of the day or the week ruined, not because of my [SLAM] autism, but because you don’t [SLAM] have any stakes in being more fucking careful about how you go stomping through the world.  It cannot just be my fault for existing and, like, daring to think I might be able to do something wild like go out for coffee before work without destroying myself.
I say things like "of course we want better treatments for things like anxiety," but my anxiety or rigidity are not the problems here; they are instilled and necessitated by my need to protect myself from your chaos and noisemaking and unreliability.
This is not just my inability to live [SLAM] in the world or deal with other people; this is not just that it’s hard to live in a city (although it is).  This is a function of how you treat the world around [SLAM] you.  [SLAM]
And when I startle or yelp in pain, other people look at me like I’m weird or frightening or disturbing, if they don’t outright laugh at me.  Somehow I’m the one who’s defective when your carelessness [SLAM] gets me hurt.
I have to spend most of my days doing complex, multi-variable calculations like this about how to get through a day; this takes up an unholy proportion of the mental bandwidth that I spend planning my life, and it is never, ever enough, and you know what?
At some [SLAM] point, it’s not me, it’s you.

Tuesday, April 19, 2016

I am Inconvenient

Reprinted from Yes, That Too

Gifted students are inconvenient. They get bored, sometimes hyper because of their boredom. They want to know why things work, not just what you do. Or they are gifted in one specific area that isn't covered much, and they drag that area into everything.

Disabled students are inconvenient.

How varies by disability.

The student who uses a wheelchair takes up more space in the hall.

The student who is blind needs braille textbooks, a screen reader, maybe both.

Because these disabilities are visible, are obvious, something is done (not necessarily something good- exclusion is often the thing.)

They get their wheelchair, or they get their braille, or they get sent to a special school where everyone is blind and everyone uses braille and it's not even a special accommodation.

You can't pretend it doesn't exist simply because it is inconvenient to deal with.

You decide to do nothing about it, but you can't pretend it's not there.

Autistic? Depressed? OCD?

They don't want to deal with that.

So it just doesn't exist.

We don't have those problems here.

They do, of course, but they pretend it's not there.

With no obvious difference, nothing you can see that says there is something different, they can pretend.

They can pretend that we are making things up.

They can pretend that we are just being difficult.

They can pretend that we are simply lazy.

They can pretend that our inconvenient behaviors are there for any reason at all.

So it is for a reason which makes it purely our fault.

So it is for a reason that does not require accommodation or education, but shame and punishment.

It exists, but they can pretend it doesn't.

And then we pretend it doesn't exist either, not wanting to face what they dish out when we try to make them see what is in front of their eyes.

Disability becomes an inconvenient part of ourselves that we would simply rather ignore, and then they have won. I refuse.

I will be inconvenient, and they will just have to deal with it.

Thursday, March 24, 2016

Isn't it time to leave your comfort zone?

Reprinted from Yes, That Too because one of the other moderators totally said I should.

I get asked this... sometimes. Most recently, I got asked this when I said I planned to stay in the same housing I'd had for undergrad through my doctoral program, since I'll be staying at the same university for it.

And yes, it is time to leave my comfort zone! I'm moving from mathematics, which has been a bit of a home to me since ever, and mechanical engineering, which I studied as an undergraduate, to neuroscience and computer engineering. That's a departure from my comfort zone. I'm walking a bit into the lion's den to be on a project designing technology for autistic people, likely working with parents and autism professionals in addition to my major professors. (I'm pretty sure I'm going to need to talk to parents and professionals, actually, since, as per usual, folks are thinking about children and since I'm apparently the autism expert on the team in addition to the technology and neuroscience know-how I'll be picking up during my studies.) That's an even bigger departure from my comfort zone.

My living arrangements are not the way it's time to leave my comfort zone. There's a few reasons for that.

Reason the first: Too many things changing at once is really hard for me! If I'd gotten into, say, MIT or Berkeley or some of the other schools I applied to, I'd have had to change my living arrangements in order to attend those schools. Since it would have been necessary, I'd have done it, but since it's not necessary, change for the sake of change and leaving my comfort zone is not going to be happening. I stick to changes that have good reasons, because change is hard.

Reason the second: My needs in terms of daily living might not be particularly complicated, but if they are not being met, bad things happen. I need easy access to food without needing to think much about how I'm getting said food or what I'm eating. That means I need a meal plan. My current housing comes with a meal plan, which is good. I also need to be able to avoid loud, bright places full of people. The main dining halls are definitely loud, bright places full of people, and we're not allowed to take our food out of the dining hall. Like many others, I know how to smuggle food out of the dining hall anyways, but when I am overloaded enough that I need to take my food out, the extra steps involved in doing so are going to be a problem. That means I should really be on a meal plan where I can take my food out of the dining hall. My current housing's meal plan allows this! So my current housing meets those needs, and finding other ways to meet those needs is effort that I don't need to make right now.

Reason the third: I don't drive. I passed my road test about two weeks ago now, so I legally can drive, but over in reality-land I don't drive. Driving tends to knock out my ability to speak, often for an hour or two after I'm done driving. (Even though I have no issues with going to class, work, or practice while non-speaking, I won't knowingly do things that make me lose speech for class, work, or practice.) Given that public transportation around the university is extant but not great, that means I should be living on campus. 

In combination, these reasons mean I should stay put. It's actually tricky to find housing on campus as a graduate student, and the on campus options for graduate students don't come with meal plans at all. It's possible to buy individual meals at the main dining hall (or at my current housing, though we don't get to take food out when we're buying individual meals as non-residents,) but having that as "one more option" as opposed to "the default I don't need to think about" won't actually increase the probability of my eating meals. 

So yes, I should leave my comfort zone sometimes. I should also think carefully and critically about when, where, and how I leave my comfort zone. 

Sunday, September 20, 2015

Movement teachers: I am your dream student. I am your nightmare student. (Crosspost)

I highly doubt anyone who has or will endeavor to teach me movement things will ever read this, but on the off chance they do. It may also help someone else who is trying to teach sports or dance or other similar things to someone who does movement like I do. 
Movement teachers: on the surface I am your dream student.

I'll walk in. You'll show me basics. Or have someone show me basics. They will do them at the same time I do, so I can exactly follow. I'm echopraxic, you see. If I have someone to exactly follow? I can do that. I can make my body do exactly what they do--or as close to exactly as different builds allow.

You will probably think that I am talented. I probably am not. I am echopraxic and I have a big library of movement to draw from. So as long as I have someone to follow I can look comfortable with the things.

You may be tempted to skip steps. You may forget there's things I haven't learned. I know how to do a lot of things with my body because of years of dance, gymnastics, & team sports. This is why I can give you the impression I have an aptitude: because if it is on the ground or in the air I have probably done something similar. I've done gymnastics. I've spun a flag & marched at the same time. I've done some ridiculous number of styles of dance. I've played basketball on feet and on wheels. Whatever you're showing me, I'm sure to have a bit of muscle memory that relates enough that I can copy you or more advanced people.

Here's where I'm your nightmare:

I can only copy for a substantial amount of time. Yes, I can do exactly what someone else is doing while they do it. But until I've over learned the movement, I will be inconsistent. Things will be in the wrong place. Things will be in bafflingly wrong places the first 200 times I try to do the thing without mimicking. The next 200 times I have to talk myself through it. I may say one thing and do another. I will find new & exciting ways to do the wrong thing.

Did you skip steps? Or forget that I hadn't learned a thing? This nightmare trait you can blame other movement instructors for, as it isn't a natural part of my makeup : I will still try to copy. I will still try to figure it out without asking. I may not know how to do the thing, but if you're asking me to I am going to think I'm supposed to. I know I haven't been taught it, but asking has rarely gone well. Clearly someone who knows what they're talking about thinks I already know it. Asking gets all sorts of belittling when you're asking about something 'easy' and can do things that are 'hard'. I do not need that in my life. It's easier to watch, copy, approximate. It may be more physically dangerous but I am more confident in my ability to avoid injury with my body than I am with instructors' ability to not be a jerk if I can't do something they forgot to teach me.

It takes a very long time for me to get things consistently in my motor memory. I'll do it extremely well Monday. I'll do it extremely well Wednesday. Friday it'll be all wrong. My body forgets which way to go, or which foot I do things with, or what order things happen in. It doesn't just forget new things. It forgets old things. A couple years ago my body forgot how to do a backhandspring--something I've been doing well over half my life.

And I am your surreal dream:

I'll learn to approximate skills. They'll be okay if I talk myself through them. Or maybe I can't do the skills at all. And then for some reason I won't even attempt them for months. Suddenly I get the ball at that spot I can't shoot from, or that dance move will become relevant. Without hesitating, thinking, anything my body will do it. It may even do it flawlessly. And you'll be confused. You didn't think I was holding out on you but maybe I was.

I was not holding out on you. My motor planning really works that way. Sometimes I have to hack it by putting myself in a position where doing something automatically is the easy option. Thinking about it hasn't worked, but letting natural movement suddenly lets my body do what it knows.

I may lose skills or movement patterns that are easy, but not the more complicated ones. There may be rhyme and reason to this, but I haven't been able to find it & neither has anyone else. I can tell you why specific combinations of movements or individual skills are hard but not why I lose things.

We're back to why, if you are willing to work with me, I'm your dream student:

I'm motivated. If I stick around long enough to master something that confused me, you are likely stuck with me. I don't stop doing things because they're hard; I was the kid who couldn't write my name. Who literally tripped on my own feet. Who couldn't organize movement well enough to get a book out of a desk without spilling its entire contents. Who couldn't kick the ball in kickball or serve in volleyball. Who only made the basketball team because it's no cut. Who got dropped from basic level tumbling classes until I spent a couple years with a book in the park painstakingly teaching myself cartwheels & walkovers, because no one else thought I could learn it. Who could not eat my food without also wearing it.

None of that is exaggeration. I was born dyspraxic. I no longer function as dyspraxic. I rewired my brain on my own. You have not met motivation & stubbornness until you have met me. In my life as a movement teacher, I say "hard work beats talent because hard work shows up" and I will always show up. I may get frustrated, but I want to work through it. I've made "beating my coordination challenges into submission" a way of life, & I will continue showing up unless you make me unwelcome. In which case I will take my motivation, stubbornness, always trying to be better somewhere else.  But "hard work beats talent because hard work shows up" applies on all sides here, & take it from me, beating talent with hard work starts as a nightmare but it turns into a pretty sweet dream.

This is cross posted from Radical Neurodivergence Speaking

Thursday, July 23, 2015

Reclaiming the Dignity Lost In A Diagnosis

by Cas Faulds

As an autistic person, I have multiple facets to my identity – just like everyone does.   One of those facets is that I am also a parent.   My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is.  I know what it is like to receive a diagnostic report that includes horribly negative words about deficits, and I know what it is like to have to explain that to other people in your child’s life including teachers and family members.

So, based on that, I would like to offer some advice to parents who have gone through this process that I wish someone had given me when I was there.

Take the diagnostic report, full of the language of the pathology paradigm, and reword it to reflect the neurodiversity paradigm.


The best way that I can explain this is to give you an example:

From a report:

X appears to have impairments in communication and social interactions.  In addition, he was reported to have several restricted and repetitive behaviors.  Specifically, he was noted to have difficulties engaging in a social conversation, high pitched vocal tone, impairments in use of eye contact, difficulties socializing and interacting with other children, and limited emotional reciprocity.  He also collects rocks, has an inflexible adherence to routines, displays heightened sensitivities to light and loud noises, and finds it hard to cope with changes to his daily routine.

No, that doesn’t say anything positive at all!

So, how can I reword this to say something positive?

X has differences in his communication style and social interactions.  He prefers to engage in behaviors that are comfortable for him.  Specifically, these include conversations that remain on topic and relevant to him.  He prefers not to make eye contact because it is uncomfortable for him, and he prefers interacting with children who are older or younger than him, rather than only interacting with his age mates who can be less predictable.  He loves collecting rocks because he is interested in the different shapes and substances that rocks are composed of.  X prefers predictability in his daily routine, and enjoys being in sensory friendly environments.


Why should you do this?  Why go to the effort of rewriting a professional report?  Because you are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once.  When you do, you want to do that from a place of strength rather than a place of weakness.  You want to highlight your child’s unique potential rather than place limitations on them, and you don’t want to have to confront all those negative words every time you do this.  This way, you have the words you need to ensure that your child receives the support that he/she needs without trading in his/her dignity.

As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me.  Their efforts to make me into their version of me were unsuccessful but it did result in me feeling as though there were things wrong with me.  For my son, I want him to be able to be him, without having other people give him the message that there is something wrong with him.  This way of introducing him to people who will work with him sets the tone from the beginning that you value I value my son for exactly who he is and I will not allow them to try to change him.