guest post! | kat’s story – neurodiversity: dyspraxia edition

Though I lacked a formal term in my lexicon, the concept of “neurodiversity” (though somewhat controversial) is one that I’ve appreciated since long before my own ADHD/LD diagnosis. Typically, neurodiversity is seen as a concept that seeks to portray a variety of neurologically based “disorders” simply as variations—these include ADHD, autism spectrum disorders and Tourette syndrome, as well as specific learning disabilitiesAnother condition under the umbrella is dyspraxia—one that is probably less generally understood than several others on the list. 

I connected with Katherine (whom I always refer to, in my head and out loud, as Kat) several years ago—we connected initially over asthma, but that’s a rarer discussion topic at this point! More often, we’re planning adventures, spending several hours on Skype telling stories, discussing school, or making mug cake (yes, we made mug cake together on Skype—the level of coaching I required was ridiculous, and Kat’s a good person who didn’t make fun of me—too much :).]

Today, Kat is sharing her perspective as an adult with dyspraxia—a developmental delay affecting motor coordination. Dyspraxia is seldom discussed in the context of adulthood, so I’m excited to have Kat here today!

———-

Hello, my name is Katherine and…

I am a computer programmer.

I am learning American Sign Language.

I am a knitter.

I am a book worm.

I am a condo owner.

I am a Cardinals baseball fan.

I am dyspraxic.

My story of life as a grown up is much the same as any other 25 year old female living in the midwestern United States. I do exciting things like go to work, cook dinner, hang out with friends, and explore diverse and varied interests. However, my brain and I occupy a different motor skills space than yours most likely does. In the early/mid 90’s when I was a preschooler/grade schooler I had motor skill developmental delays. At the time the doctors called it dysfunctional/disordered motor planning, at the time new politically correct version of “clumsy child syndrome” which is now commonly know as dyspraxia. Basically my neurons don’t always connect my muscles to my brain well. Sometimes the message gets through and my body works just fine, other times it gets lost along the way. My writing skills are slow, painful, and took exceedingly long to develop. PE was my least favorite class ever; they always passed me but noted a need for improvement of coordination in activities like running, skipping, and jump rope.

In some ways getting to high school, college, and now the “real world” is easier. I’m no longer graded on my penmanship, and no one expects me to write in cursive. Nor does socialization involve jumping double dutch, although walking in heels is equally perilous. The majority of my work and other written communication is keyed out on a qwerty keyboard of some sort. While learning to type was a challenge initially I’ve taken to keying by touch much better than I ever had to writing. You won’t hear many stories like mine because I’m from the US, seemingly few dyspraxics exist Stateside (UK seems to have cornered the market). Also much more common in males for whatever reason. I’m a grown adult who has found a successful contributory place in society.

The voice of adults with developmental delays is seemingly nonexistent. Not because we aren’t here, and no, we didn’t outgrow it. Turning 18, 21 or any other arbitrary age doesn’t magically catch you up to your peers. Some of it is that we’ve learned how to adapt our lifestyles to avoid skills we haven’t mastered. My cooking has never been dinner party elegant but it tastes just dandy. I’ve found cooking implements that don’t require lots of coordination to work (OXO make some real winners at least for me). I drive a stick shift car of the same brand as i first learned on (so it has the same sized gear box with a clutch that “grabs” similarly). If I’m tired or have a mentally stimulating day ahead of me I don’t drive. Quite simply, while I can drive it takes quite a bit of mental concentration to drive, follow the assigned route and otherwise be attentive to my surroundings. Somedays this is more than I should really take on. I know my limits and live close to a transit loop. My life looks like that of the neurotypical adult because pick surroundings and activities that suit my needs and abilities.

Life is learning and growing and changing the world around you to make it work. Taking it in stride when you trip over your own feet stone cold sober in trainers.

—–

Kat has a degree in computer science and works as a programmer—she is pursuing American Sign Language as a personal interest (but in the very ambitious form of evening university classes—and watching the videos for my Disability Studies class in the Fall). Kat’s “diverse and varied interests” include several different fitness pursuits (running, cycling, swimming . . . ahem, triathlon :] . . .), making me jealous as she goes to Chicago, and crafty stuff like knitting and—though, I think this has culminated—having all sorts of condo do-it-yourself shenanigans.  

Kat can be found on Twitter as @kat314159 […yes. That is pi there. No, not that kind of pie].

twenty two: spinning.

and i scratched these words into a black notebook…

last straw, jack’s mannequin

There are so many unexpected ironies included in those lyrics with what was to come—foreshadowing.
i’m one year older now since the last time I saw you in case you wanna know, i’m about to say what i’m up to.
first of all i’m a sluggard, moving slow in a clumsy way
some peace of mind is what i want, but that will be the day.
i’ve been going without fault for so long, and this must end
running round in circles, i’ve been so far from myself
searching for the energy, and the time to make a change
to make a change in my life, instead of watching it pass by
do something now while i’m alive
 
i’m twenty-two, don’t know what i’m supposed to do
or how to be, to get some more out of me
i’m twenty-two, so far away from all my dreams
i’m twenty-two, twenty-two–feeling blue
 
[…]
afraid that i will be weak forever
i can’t stay in this shape any longer
my life’s just another cliche
 
twenty-two, millencolin
As I did of 2013 when 2014 started, I refuse to recap my twenty-second year: It was important, it changed me, but that change did not occur through circumstances I chose. It was important to me—it still is important to me—to share those stories, to be transparent, for a variety of reasons. Among the most important, though, can be summarized concisely in my friend Jay’s words: “We cannot control our circumstances, only our responses to them”.

i’m keeping quiet until the phone stops ringing  lately it’s hard to disconnect, i just want something real i’ll find my words if i can just stop thinking the room is spinning, i have got no choice be patient, i am getting to the point… 

spinning, jack’s mannequin

I grew, I came out on top with a few more scars inside me.
you watched that poor girl waste the best years of her life and i’ll be damned if i am going out i will not go out that way.
last straw, jack’s mannequin.
I’m alive and determined to make this count.

i can’t remember when the earth turned slowly so i just waited with the lights turned out again i lost my place, but i can’t stop this story 

Tomorrow, I turn twenty-three.
i keep forgetting when the earth turned slowly so i just waited till the lights come on again i lost my place but i can’t stop this story i found my way, but until then i’m only spinning 
spinning, jack’s mannequin.

a year ago today

A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

asthma awareness month: google hangout q&a livestream

May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day.  After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.