What words don’t say

I’m not a huge script-er.  I mean, okay, aside from kitty scripts, which probably do comprise half the total things I speak.  How be my baby tees?  Kitty meow?  Meow meow meow meow MEOW meow meow meow–who said that?  Is Tia fluffy? (Note: Tia is a Persian and has never been and will never be anything BUT fluffy).  Does Tia have mats?  Did Bob brush her?  Did he get them?  Are you sure?  Where did she sleep?  How did she sleep?  Where is she now?

When I finally entered this decade and got my first iPhone a few weeks ago, my mom FaceTimed me that evening.
Me: Hi, Mom!
Mom: Hi, Lyd!
Me: Mom, I see you!
Mom: I see you too, Lyd!
Me: Can I FaceTime Tia?!
Can Goose FaceTime Tia?!

Come on.  Tell me no one saw that coming.  If you give a Lydia an iPhone, she WILL want to see any nearby kitties.

I actually texted my mom earlier, “meow meow kitty meow.”  What does it mean?  Well… it… I guess it’s sort of verbal repetitive stimminess making its way into my writing/typing.  It doesn’t happen that much.  I tend to be more purposeful with typed words.  Verbally, I get caught in cat scripts with my mom, especially, and especially-est in the car.  I also have some odd structuring of my words; I think the other day I asked something, “But why did we pick a big such a one?”  Or, the one that comes to mind is when my mom called my sister after a doctor appointment and I asked, “Mom, did you tell her that they would take off my butt?”  The meaning is totally there–if you have the context and know me–and my mom just about always understands the first time.  These communication quirks are sure quirky, but they don’t lead to frustration because I am mostly understood.

The frustrating part is directly related to overstimulation… which shuts down some pathway that must be integral to connecting my mind to my mouth.  I know EXACTLY what I want, but in stores or any socially chaotic environment, it’s pretty tough for me to get it out of my mouth.  The grocery store is the number one problem place.  I walk up and down the aisles, mildly stimmy hands, and stare at the shelves… walk… glazed over stare… and my mom will ask, “What are you looking for?”  I’ll respond, “I… the… Mom? MOM!… it… uh…”  I’m so totally visually overloaded that, first, my brain ceases to make sense of ANYTHING visual coming at me.  I no longer know if I’m seeing crackers on those shelves or monsters or hockey pucks.  I could be anywhere and looking at anything.  The problem is that I also cannot communicate what it is I want, so it’s hard for anyone to help me.  I know exactly in my mind, but I can’t get it out.  So, we stop, and I regroup and get exactly the thing in mind that I’m trying to find–match the mental image when the right thing is in front of me.  Simple enough.  Except that stores are quite adept at moving their stock, not to mention brands change packaging, price, package size… and if anything is not just the thing I had in mind, it takes some near-meltdown unhappiness until I can make a decision about the next-best product.  I do not decide well under sensory stress and a downward cycle ensues.  If you see a young adult losing it on aisle 17, please, give the girl some grace.  I don’t want to make a scene in the store.  I Just want MY crackers and MY fruit snacks and MY yogurt and to get the heck out of there!

But, let’s say everything is totally as it should be.  In these cases, I’m very verbal, and THAT is an understatement.  I’ll lecture anyone who will hear me about the genetic history of the quagga, or the false basis of certain political beliefs (and I don’t get very into politics), or almost anything to do with autism.  Information is my game and the key to… everything.  I can’t get enough.  I’m a junky for obscure and nerdy facts, even if I’m not really all that nerdy.  Quirky is more like it.

The thing is that no amount of prattling about the glory of facts and new information can communicate the complex emotional stuff that I really DO feel and understand.  Until recently, even my family thought I just didn’t get it, didn’t feel it.  At 26 with a diagnosis as a good many words at my disposal, if those closest to me believed this… then I have a deep fear for the millions of kids and adults who are younger, undiagnosed, and less verbal.  Behavioral therapy, at its core, disregards sensory and emotional circumstances.  So, you have a minimally-verbal five-year-old who hits his teacher and you want to address it with behavioral strategies?  Until the kid has a system in place with which he can communicate pain, upset, stress, fear, frustration, anger, sadness, and a downright I DON’T WANT TO–the issue is one of COMMUNICATION and not behavior.  It’s absolutely cruel to ignore that a child could be petrified that he’s being asked to do a task he doesn’t know how to do or scared because a kid is threatening him or calling him a freak or in pain because he has a migraine from the lighting… and approaching him with a strategy that essentially says, “None of that matters–you have to act this way regardless of any of that.”  Never teach a child his pain doesn’t matter.

In my final term of my grad program, I’m in a class that focuses on Place and Setting.  I’ve been using the assignments to explore the complexity of relationships with my family members.  I’m writing about them in real and honest ways, about the memories of childhood through the lens of what I know now.  And, often, what I knew then.  I read my mom the piece about my dad, and her response was, “SEE!  This is the SHIT you always had in you but you couldn’t tell us!”  Oh, Mom, but now you know that, and now you know that it IS in there.  We’re good, Mama.

This piece isn’t finalized, but it’s about my Nana, my dad’s mom.  Please read it, and then try to tell me I don’t understand complex emotion, experience, and relationships.  Tell me I’m not capable.  I dare you.  As sarcastic as that way, this isn’t: I dare you to presume competence in ALL of us–to believe that we DO understand even that which we cannot express.

The World’s Her Stage

The Nana I knew had been Mary Lou for so long that her given name was nothing more than a fascinating bit of trivia.  Her birth date was documented in her records as “two-twenty-eight-nineteen-fourteen,” which she always reported with a break in eye contact and an upward tilt of her chin.  World travels and brilliance be damned; those two years were the source of untold worth, if only to her.

I never knew Mary Virginia, born the 28th of February, 1912.  I imagine her as a child; dark-haired and small for her age, with an early surety that she did not belong in the back country hills and one-street town where people spoke of the holler and catchin’ a crawdad over yonder crick.  She must have been out one sun-kissed, late-summer morning, traipsing through the grass with a growing annoyance at each new dew drop affixed to her shoes.  Near some tree, unidentifiable to all but her—she would know just the tree and its every nuance—on hill among countless others in a place where the earth rolled like the wrinkles in a blanket, she buried Virginia and 1912 once and for all.  They did not suit her.

Somewhere in her later years, those details became lost, if not as bits of trivia considered amusing to her grandchildren, then at least as they informed any part of her identity and the woman we knew.  She’s one who seemed to have come into life in middle age and then grew wise—much like the rest of us—but never really old.  In her world travels, Mary Lou fulfilled what must have been a lifelong desire to see, to go, to be—that is, to become the person she always felt in the mirror.  That three-week trip to far-off places confirmed the diversity of the human experience and served to solidify her faith in the here and now.  The water in the ocean does not belong to a place but to everyplace, and as she looked out at the great blue expanse over the railing on a boat, her faith in the hereafter slipped from her fingers and fell deep into the waters.  Those waters were immediate, rocking and alive, and they were beautiful, and she was sure they were all anyone needed to see to believe that beautiful things were the purpose of it all.

Granddad Clarence was the love of her life, but I only know this from writings not really made known until they had both passed on.  Some years before I was born—I don’t even know just when, as that’s how often she talked of him—she lost him to cancer.  With his passing, so too did she lose some unspoken part of herself, probably one so deep that she could not bear to reach into it and carry the pain forward; she went onward alone, supporting herself against the trustworthy constant of beauty itself, chasing it as the thing to be sought.

Her poems were a testament to her love of nature’s perfect beauty, and yet she was very careful to make up her face just so and paint her nails and lift her chin as she looked away to say “two-twenty-eight-nineteen-fourteen.”  As I travel back to my dreams of her childhood, back to the expanse of the ocean, back to the hospital where Granddad passed… I think, perhaps, that she did not so much lose those parts of herself as she quietly but very decidedly left them there.  Her control on things was rarely loud and forceful and nasty; it was quiet with a grasp that was surprisingly firm.  Mary Lou would not lose a thing.  Even the hair on her head obeyed her demand for dignity; when she passed away at 89, she had not a single gray strand.

Except that one time with the diamond.  Nana had a beautiful diamond ring.  “It’s a real one, one of my good ones.”  I spun it on her fingers, as when her fingers grew thin, she wore it around her neck for safekeeping.  Nana thought ever so highly of my other grandmother, her polar opposite in every way, and the two of them were the closest of friends long after my parents divorced.  One afternoon, the three of us pulled into a parking spot to get lunch at the local diner.  As we walked across the parking lot, Nana realized the diamond had fallen out of its setting.  I don’t remember the search, except for the drear and rain and chill in the air, but I do remember that the beautiful diamond was found in a puddle in the parking lot.  I’m not even sure who found it; I’m also not sure it matters.  She was not ready to leave it, and so it would not be lost.

“This is my good diamond, see?  I’ll leave it for you one day.  It’ll look just lovely on your finger, hm?”


Whoopsy-daisy; I forgot a title.

As I work on my thesis and also try to manage and mind the other writing obligations I’ve taken on, I’ve become well aware that my intros are always too long.  I have a point, but first, I have to lead into that point, and, well, I have to lead in to the lead in, too.  This is the third step removed from my point–in case you wondered.  

Now, this transition is acting as an extremely overt but also structurally sound and case-in-point connection between the first paragraph and what I’m about to say, which is that I’m not like other people.  I was thinking about it earlier, as I was telling my mom that my professor for my (final) thesis work this term seems to have a similar quirky sense of humor.  I hope that means she’ll get the zillions of funny points in my writing that, well, no one else seems to find funny.  I crack myself up all the time, like, um, the first sentence of my paragraph here.  I don’t think anyone else gets it, but I’ve learned to be okay with it, because I’m laughing, and laughing (as long as it isn’t at someone else’s expense) is pretty uniformly a good thing, no matter how weird the reason.

Listen, if I can deal with cleaning the litter box by pretending I’m digging for treasure, well, I might be weird but I’m also probably having a far better litter-box-cleaning experience than someone who is normal… and miserable.  I’ll take weird but happy, very happy.

I don’t just have interests and passions.  I am so wholly obsessed with cats that life without them isn’t a life at all.  Spending 15 months in nursing home, I lived for going home and seeing Lucy.  Every other moment of the week was in anticipation of that first little chirp she’d say as a greeting, and the thousand chirps that followed in the few hours we were together.  Now, after two months in our own, teeny-tiny studio, I don’t think either of us has forgotten, or will ever forget, the time apart.  She’s sleeping on the arm of my chair as I type.  Every time I touch her, she chirps the most pleasant little kitty noise.  It’s like a chirp button.  Every touch, every time.  I love it. 

I love her toes.  I love the soft spots behind her ears.  I love the pattern on her belly, and the downy fur on her chest.  I love her wide-open eyes.  I love when she sits like a loaf of bread, and I love when she sleeps in a circle, and I love when a little doze on the arm of the chair turns into a sleep just a bit too deep, and she begins to sprawl and then startles herself when she flops off the limited space.  I most especially love when she lays on her back, paws in the air, and looks at me with a cock-eyed expression that is so familiar but the meaning of which I cannot discern.  I love sleep eyes.  Most of all, I love that when I wake up over and over at night, or when I can’t sleep at all, she is snuggled up against me and always within arm’s reach.  She and I are we.  

I had a terrifying dream the other night.  I don’t want to go into detail, but it was cat-related, too.  I woke up almost panicked, and I reached for Lucy.  Chirp… the chirp.  I love the chirp.

I live hard.  Intense is the word I hear a lot.  When I do something–anything–study, write, work, learn, explain, love, dislike, try–I do it with everything I’ve got.  Saying that “I don’t like” some feeds doesn’t begin to cover the fact that I want to gag when they’re in the same room and have never put many very typical foods anywhere near my face.  “I don’t like loud noises” doesn’t describe my rigid arms and clenched fists at my sides when I’m in public places.  What if something beeps, or worse, what if something bumps me?  “I like words” doesn’t cover the all-encompassing need to write or the fact that I spend nearly every waking hour either reading or writing, because I’m not sure I exist if I’m not taking information in or wrestling with it as I put it back out.

I’ve always known I’m not like other people, but I also had an inherent certainty that I was the one who wasn’t okay.  The autism community, well, we’re broken.  I’m not sure why anything thinks that a huge conglomeration of broken people–a church or a family or a group of people focused around a cause–would be anything BUT broken.  The sum of a whole bunch of brokenness sure ain’t perfection… but it IS completion.  We are not perfect, but together, our abilities make great things possible.  We don’t need to be perfect to be complete.  

Sometimes I think, at least these days, as things are forever in flux (and oh, how frustrating that is), that autism is less of a diagnosis and more of a way that I find my tribe.  I don’t need a diagnosis to know that I’m not like other people.  My strengths and loves and passions are too strong, and my weaknesses are just too weak.  Early on, I needed the word “autism” to give me access to reading that taught me about myself.  I had such a lack of knowing who I was that I had to read external accounts to realize that, why, yes, I do have major sensory issues.  I didn’t know until I read about common behavior that clued me in to the fact that I do those things and thus have a root cause of sensory dysregulation.  Autism was a word that opened up the knowledge of who I had been and who I will be.

But now, I know.  Learning that I wasn’t the only one gave me the all’s-well to discover myself and feel okay about my quirks.  I am well aware, now, that I absolutely love kids’ movies and hate to be surprised, that I can’t make decisions when I’m overstimulated (grocery stores are the bane of my existence), that I lecture far better than I communicate, and that cats are my world.  I no longer need to connect to the experiences of others to know what’s in me… or to be okay with it.  There’s no changing it, so, I figure I might as well accept the quirks as I seek God in everything I do.  As simple as as complicated as that.

Now, when I hear “autism,” I immediately think of other people… the kind of people I want to know.  I want to know people who don’t do masks, who don’t speak in sarcasm, who get past the chit-chat and talk about real things that matter.  Parents, grandparents, kids, adults, diagnosed, undiagnosed, verbal, nonverbal… this is my tribe.  These are the people who don’t blink an eye at my monologues, who text me with a request for a current picture of my cat (because the one from last week is now outdated), and who help me do my laundry while snuggling Lucy between loads.   They’re the toilet paper fairy, when they drop off toilet paper on my doorstep when I forgot to get it at the store.   They’re the mentors who boldly live out their faith, who remind me that sleepless nights (a common occurrence) are the perfect times to pray.  They’re the kids who trust me with their real selves… I hope because they know that, whatever and whoever they are, I’ll affirm their awesomeness.  

The constant flux of the world–relationships, understanding, and my very messed up body–is an overwhelming thing.  But I have an army… not behind me, but with me.  In step, alongside, we’re in this beautiful mess together.