Getting to be Gotten (OCALICON2014)

This is a story about community.

It starts way back when, in about 2010 (she could probably tell you the date!), when a 19-year-old autistic girl who had commented a few times on my blog said that she thought we could be good friends and asked if I would talk via email.

That girl knew what she was talking about (she usually does).  Here’s us, last July, the first time we met!

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I had done autism advocacy in 2011 for a time, but when I got sick, I really stepped back and hadn’t done anything public in a couple of years.  The Autism Society of America Conference was held in Pittsburgh (my hometown) last summer, and I wasn’t into the whole conference scene, but I wanted to go for a day because I wanted to hang out with Chloe!   Something tells me that, once again, the girl knew what she was doing, because I was totally hooked.

I attended OCALICON last year… always in Columbus in the third week of November.  Because I wasn’t even aware of wanting to go until late July, I hadn’t submitted any proposals to speak, but I did get to go and have a blast and meet so many long-time online friends.

This year, I submitted a few proposals, and the one Stephen Shore and I proposed on sensory issues was accepted as a panel discussion… as luck would have it, the other half of the panel was Chloe and Brigid, another spectrum friend (Val Paradiz was also originally on the panel but couldn’t make it–we missed her!).   As the conference drew closer, I was also asked to participate in a panel on the main stage.  OCALICON draws about 2000 people, so I was both shocked and very excited to be asked to participate in this panel!  I am one of the Young Leaders with the Autistic Global Initiative, and our leader, Sondra Williams, is a good friend and board member at OCALI who suggested that I might be a good fit for the panel.

We rode to Columbus, and we didn’t cross the city line before I was devising dinner plans with Chloe!  I was pretty tired by that point, but if you’re gonna be tired, hanging out with some of your favorite people is the way to do it.

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Wednesday was the day for both of my speaking events.  The sensory panel went off without a hitch.  My mom said that it sounded like we’d rehearsed… ha.  We wung it (winged it?) start to finish!  But we know our material and each other, so no one was clued into the winging!  Here’s me giving my part of the presentation; I focused on sensory issues in the medical setting and coping skills to address them, and I also talked about feeding issues in spectrum kids, complete with my favorite analogy: “Would you like to eat your shoe?   Does it matter what kind of shoe it is?  How many stickers would it take for you to take a bite?  Do you dislike shoes because your mother didn’t cook them well when you were a kid?”

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Then, we got ready to speak on the main stage!   Sondra Williams, Chloe Rothschild, Stephen Shore, Cameron Blackwell, and I (all spectrum advocates) did a panel session.  We’d been given a set of questions to prepare in advance, and we took some from the audience, too.

Some of the funniest and best moments were in the hour prior to the session starting, as we were on stage and preparing for the panel.  We had individual mics.  There were two giant screens on either side of the main stage, and I mean giant!

main stage 7

Yup, that’s me, larger than life!  When I first saw myself on the screen, I made a very typical happy-startle noise for me… WOO!!!  It came out before I even knew it was going to… I was so surprised to see myself on such a huge screen!  Stephen and Cameron, both musicians, were mouth-trumpeting various band pieces, and I thought (totally inside my own head) that they should do 76 Trombones.  It wasn’t two seconds later that Stephen started it, and then Cameron took over the melody while Stephen did the counter-melody.  And thus, we find the answer to the question of what happens when you put five autistic people on stage :-)

Let me say, and this is probably my one and only downside the whole event… the stage lights were intolerably bright.  I actually had the beginning of a migraine by the end of the one-hour session.  Sondra smartly wore sunglasses, and good old Chloe (actually, she was the youngest of the group, but it’s just an expression!) got hers out of her purse for me.  I wore them for a bit and then took them off for appearance’s sake (yes, yes, I can be vain!)… but not before I struck a movie star pose.

main stage 6

I sit with my legs crossed or under me all the time, because they hurt me when they’re down, and the blood pools in my feet.  I said something about knowing it looked unprofessional but that I was going to pull my feet up until the audience began to arrive, Stephen said, “Solidarity!” and pulled his up, too.  Everyone had theirs pulled up for a bit.  I never would’ve thought to make someone feel included like that… but you can bet, when Chris (the OCALI staff person who led the discussion) asked us each to give an example of when we feel INcluded, and another of when we feel EXcluded, that I knew that I knew I felt included among my spectrum pals.

main stage 4

A few other photos.  First is my new favorite photo of Chloe and I, right before I hugged her so tight I almost made her feet go off the ground, as she would tell you.  Hey, I do NOT like light touches!  The second photo is me with Sondra Williams, who is an incredible advocate, mentor, and friend.  She is the leader of the Autistic Global Initiative’s Young Leaders Division.  I am one of those Young Leaders, though I am getting close to the age cut-off… but I very much wanted to be a YL before moving into a full AGI role, because I know I have so much to learn from Sondra as well as the other YLs (Chloe Rothschild, Dani Bowman, and Jeremy Sicile-Kira; Campbell Teague and Brigid Rankowski are now in the adult division). She is so in tune to each of us need and how each of us can fine-tune our advocacy skills.  I so admire her open-mindedness and ability to trek through wildly differing viewpoints and never let anyone walk away feeling dismissed.  Her faith, too, is something I greatly admire.  We all gushed about Sondra on the stage… she is one of the best mentors to young advocates.

lydia and chloelydia and sondra

We had a Young Leaders meeting, too.  One of the keynote speakers for OCALI this year was Dani Bowman, a young adult on the spectrum who is a very talented animator and artist.  Dani and I have crossed paths via Facebook, but she lives in California, so we had never met.  I was so glad to finally get to meet her, and she is every bit as sweet and kind in person as she is to all of her Facebook friends.  That’s what I so admire about Dani… she treats everyone with kindness.

young leaders 3 young leaders

Thursday night, we all went out for dinner… and I had no idea that there was a surprise party planned for me!   The perfect way to celebrate all it took for me to get through that MFA… friendship, community, and a lot of laughs.

out to dinner

Last, but far from least, check out this series.  Not sure if they’re worth a thousand words… but they are worth every bit of these six: Together, we get to be gotten.

lydia chloe stephen 1lydia chloe stephen 3 lydia chloe stephen 2

If all of that doesn’t prove well enough that we need each other to succeed in advocacy while deeply valuing each other in order to succeed in life, here’s the kicker.  The big challenge in all this was going to be finances–I could not have gone on my own pocketbook.  I am working my tail off (how about that–I finished my MFA with a 4.00 a couple of weeks ago!) to get to a place where I can support myself and my speaking events… but this year, there was no way.  For the 15 months I was in a nursing home, I got $28 per month… not exactly enough to be able to save!   For financial and medical reasons, OCALICON is the only conference I attend each year.  Without this one point of connection, my work and my passion, my relevance and my perseverance to keep fighting through everything that holds me back would be running on fumes.  I very hesitantly started a GoFundMe fundraiser in hopes of bringing in a few dollars… anything would help!   The fundraiser wasn’t up for two days when a total stranger had funded the entire thing.  Is that even possible?  It must be, because it happened.  I won’t “out” the awesome (spectrum!) donor, but I will say that he said that he had once been where I was and now that he was able to help, he wanted to–and to go and do good things.

Community.  It’s everything.

I don’t think I’ll ever not be speechless when I think about that generosity, and I am more dedicated than ever to educating , advocating and mentoring to improve understanding of quality of life for autistic people!  To the person who made all of this possible, my deepest gratitude.

I’ll end with another six-word phrase that capture all the joy and purpose and reason for being together within these photos: Not despite autism; because of it.


The handcuffs slid on so silently, they caught me unaware. I hadn’t run entirely amok to that point, but the standards of society had not yet made their way into my little life.

First, they encouraged me with smiles and sing-song voices and hopes of growing big and strong. “Good girls eat their vegetables!” Then, they bargained, promising rewards of playing outside and stickers and a coveted spoonful of peanut butter. Finally, they laid down the law: “You’ll sit here ‘til you’ve eaten that broccoli!”

Shocked at the demand, I startled. Angry, I sulked. Tired, I slumped. Exhausted, I finally slept… right at the dinner table. Having committed my first crime against Good-Little-Girldom, the cuffs were silently slipped over my wrists and locked in place.

The experts insisted, “She’s smart enough to figure it out! She’s just stubborn! Starve her out and she’ll cave!”

The food police didn’t know, for I couldn’t tell them, that raw fruits and vegetables were as appetizing to me as my muddy sneakers or a pile of dried leaves. How many positive thoughts or stickers or promises of candy would they need to overcome the part of their brain that tells them not to eat those things? I couldn’t say much, but my vomit spoke volumes.

First grade was a jail cell disguised as a circus tent. My first exposure to life in the general population taught me the cardinal law of childhood: Different is bad.
Two dozen pairs of eyes had been bright and expectant in September. By November, some stared dimly at the rainbow walls, now immune to the same messages hung there day after day. Others intently picked the wood back from the point of their pencils or shredded paper in piles on the floor, mindless actions to keep themselves awake as the warden droned: “Put your name on top and write the correct color word underneath the picture.”

My eyes had glazed over—sensory onslaught coupled with intellectual deprivation—but they suddenly exploded with light. I likely didn’t raise my hand, but the words wouldn’t stay down. “What if my mom taught me that blue was really yellow, and red was really green? Would my brain still know or could a kid be taught wrong and…”

I heard the tap of two fingers on the corner of my desk. Looking up, I saw a finger raised to puckered lips. This was our code, the one she used only with me.
I had read the formal reports. “She has to learn to stay on task! She’s smart enough to know better! She has to be more organized before she can have more difficult work!”

The warden didn’t know, for I couldn’t tell her, that I didn’t do the work because I spent my evenings lost in my sister’s sixth-grade text books and Discovery Channel documentaries and The Hobbit.

I only did two years of my three-year sentence in the district prison. The building was massive but invisible to outsiders, the faded brick so plain brown it faded right into the standard, dreary Pittsburgh skies.

Even at the end of my stay, I would turn a corner only to find myself lost in the monotony of the plain white plaster walls, uncertain which corner I’d turned, which room I sought, what time or even day it was. Scores if not hundreds of separate rooms, and I only knew where to find a single window, a rare six-inch slit of clouded glass, partially obscured by shelving. Built in the 1970s, air-recycling vents were the state of the art technology that meant a stench from a chemistry experiment might turn up on the opposite corner of the building in the gym.

The bells rang by the oft-broken clocks, making them impossible to predict, and my aversion to beeping and ringing meant they hit me like gunshots. Arms rigid, fists tight, I walked through a battlefield, every bump from a fellow automaton a bomb for my senses.

Cliques formed and taunts flew under the surveillance of guards who insisted: “She’s too sensitive! She’s disrespectful of authority! They wouldn’t be so cruel to you if you weren’t so maniacal.”

The sheriff didn’t know, for I couldn’t tell him, but trying to force this square peg into round holes only damaged the peg.

I’m disabled, not broken.

Sub-standard scores do not mean sub-human lives. Delayed means all in good time, not permanently impossible. Autistic means radically aware, not locked away.

The jails are not built of autism but expectations. A brick at a time, my purpose is to tear them down. Every key typed opens an old lock:

I value my education more than the acceptance of my peers.  I found myself a square-hole drill.

Being smart doesn’t mean I understand social cues or that I can’t learn them.  Teach me, don’t force me; value cooperation, not compliance; challenge my intellect, engage my mind.

My brain doesn’t register that broccoli as food. The handcuffs fall off, my hands and my spirit are free.

(Written for my Place and Setting class; my thesis is in, and I am seven days from finishing my MFA!)

Abundant Life

The best laid plans…

I sort of shuffle from one unexpected health crisis to the next.  I’ve had so many things happen with no warning in the last few years that it’s essentially impossible to get me excited.  I’ve woken up only to throw up twenty times a day, every day for three months until I had a feeding tube placed.  I’ve found my shirt and sheets stained with blood in the middle of the night.  Fevers, well, I’m quite used to the low-grade, long-and-slow push of an autonomic fever that stems from my body’s inability to maintain stability in its temperature, heart rate, blood pressure, digestion, and bladder–all that unconscious stuff.  But on the 23rd of September, I had a 12-hour fever from hell.  It only hit about 102, but the pain was horrific and toward the end, I was having trouble breathing.  I called home health in the wee hours and was told to give it another half hour and to call 911 if it didn’t come down.  An hour later, it was down to 101, and I crashed for the night.

It immediately made me think of last winter.  Five times in seven weeks, I had bad fevers, just like that one, except higher, up to 104.  The pain was horrific and I would get confused, even delirious at one point.  Since I have a central line, sepsis is a massive concern, but two sets of blood cultures (four bottles each) only resulted in one bottle growing bacteria.  The attending started IV antibiotics, but four days later, the infectious disease doctor stopped them, saying that I was not infected in any way.  Oddly, the fevers stopped….

Until last week.

A second one hit on the 30th.  I was supposed to leave the 31st to travel 12 hours via car to Atlanta to see a super-specialist in hopes of getting some majorly-needed direction on some persistent and critical issues… with any illness or prolonged fatigue, I keep going through periods of what appears to be a metabolic crisis, resulting in daily blood sugars of 300 and 400 and even higher.  This is not okay.  My local doctors are stumped, and we’re counting on the specialist to have a broad enough view to figure this out.  But, of course, Monday night into Tuesday morning, the fever struck.  Home health was set to come the next day to draw labs, including cultures, but the problem was that they would not be back in time to have a firm answer as to whether I was okay to go on to Atlanta.  I talked to my PCP at 5 AM and we agreed that 911 was my best option to get labs done quickly and have a sense of peace on my trip.

This is me as I waited for the ambulance.  A little flushed, but you would have no idea what my body was fighting… in fact, the fact that I ALWAYS “look good!” can mean that doctors don’t realize how sick I am.


In the ambulance, I knew.  In the same second I saw my vitals… heart rate going over 160, blood pressure 80/40, temp 103.5, and O2 saturation right around 90.  I was having trouble breathing, and my arm kept falling off the stretcher but I couldn’t get it together to pick it back up.  The paramedic in the back with me picked it up every time.  I knew.

So, this was when I was hanging out at the local hospital ER waiting on labs:

passavant ER

That is not a face I make.
The local hospital wasn’t up for all the tricks my body likes to play, so I was taken to a bigger hospital downtown.  It’s the first time I’d been there, and I was really scared of having new doctors take over my care, especially as sick was I was.  I still don’t have an official mito diagnosis, and it was clear that I would not be making it to Atlanta.  I was on the PCU, or Progressive Care Unit, also known as “step down” from ICU.  I had the best care I have ever had.

My port made it known that it was obviously infected:

infected port

I had emergency surgery that night to have it removed.  Well, first, the big freak out was that I had absolutely no access.  It was impossible to place an IV.  That is why I had a port in the first place, even though doctors have tried to tell me I “didn’t need it” and that I was young, so I “must have good veins!”  I. do. not. have. access.  They were discussing a femoral (groin) or IJ (jugular, in the side of my neck) line but opted to place a PICC (like a super-hefty IV placed into the upper arm that has lines that go to the vein above the heart) in hopes that I did not have a particularly nasty bacteria that would require that PICC to be removed and another one placed for long-term antibiotics.  Central lines, like ports and PICCs, cannot be limitless over a lifetime, so it’s not a good idea to use them unless absolutely necessary.  Every point of access used today is one that cannot be used in the future.


My port grew gram positive cocci in clusters (surprise–the same bacteria that one bottle grew last winter), and then the peripheral cultures (taken from my wrist and arm) also grew.  I was septic.  I was having extreme pain when I breathed in and had to stay completely upright.  It turned out that I did have the aggressive bug (staph aureus).  It had grown in clots on my heart which got thrown into both lungs, and the bottom of the left one had collapsed.  I’m not sure why it took three days of on-and-off screaming to make that determination, but staying on oxygen really helped with the comfort level.  I’m a tough cookie when it comes to pain, as it’s sort of a never-ending thing, so if I’m ballistic and screaming with every exhale for three hours, um, I’d appreciate a little pain control.  But my dang blood pressure was really low a lot of the time and so they were afraid to give me a lot of pain meds.  That was rough.

One thing I was extremely glad I did was have photo proof of some of my body’s quirks.  Like, when I say, “Dude, don’t come near me with that tape,” I tend to get blown off.  With a PICC line, you have to have a sterile dressing over it at all times, or you risk an infection just like the one I’m fighting.  Every single adhesive except one very strange one causes… well, much like this.  And those blisters burst, and that is a really huge infection risk.  Fighting doctors about tape reactions was not a thing I was up for doing, so I whipped out the photos I have documenting my reaction to every freaking tape under the sun, and, voila, “No tape on skin!” went on my board right off the bat.

Sorbaview 2

Even in the worst of it all, I remember that quirk and laughter only stops when I choose to leave it at the door and that, if I’m grumpy and miserable, I’m the one suffering the most.  So, I choose to bring my humor along with the spare Diet Mountain Dews in my suitcase.  I have to use many of my own supplies while inpatient, because I’m so sensitive and my body is so particular that I can often only tolerate one product.  I have to pack a medical suitcase to go to the hospital.  Long story short, I had to use my own feeding pump and tube feeds… but I didn’t have clamp to attach my pump to the IV pole, since I usually use a backpack.  Dragging my backpack AND a pole got old really fast, so I sort of jimmied the pump up on the pole using a box of hospital tissues, medical tape, and a cut piece of tubing.  I was seriously proud.joey pump

On Friday, I got my second PICC, which, unfortunately, had to go into my right arm.  This is the line I’m stuck with for six weeks, attached to IV antibiotics round the clock.


When they got my skin-safe dressing on, I looked at it and proclaimed, “it’s like the little black dress of line dressings… hugs all the right curves and just a little bit see-through!”

I’m also hooked up to continuous IV saline and my tube feeds and their hourly-flush.  If you’ve lost tracked, that makes a 2-liter bag of saline, 325 mL of antibiotics, 600 mL of tube feeds, 500 mL of potassium-infused flush, three pumps, and an extra charger, all in my backpack.

“Don’t lift more than ten pounds with your PICC line, except, here, take this!”  Uhhh huh.  It’s not ten pounds, trust me.  Closer to 30.


Also, I want to know—who’s this Rapunzel chick and why does she think she has dibs on being tangled?  All she has to worry about is having her hair pulled.  I have six lines to manage, plus two chargers to unplug and realign and re-plug every few hours when I get up in the dark to go pee at night, and I have to worry about pulling my line or my tube out.  Hand over the crown, Rapunzel.  I’m the real princess.

Strangers probably look at me and see a medical onslaught, and people who don’t know me well probably look at what they think they can see of my life and think it’s sad and small.   If you think my world is sad, I think your perspective is much sadder.  Some think that to really live is to go to parties and getting the next big promotion and getting a fancy new car… I don’t know anything about any of that.  What I do know is the joy of coming home to a kitty who has missed her mama for five days, and the overflowing heart of making it back to the autism center to find people who were waiting until I got there just so they could see me after a few weeks away, and the support of a family and greater community who go so far beyond tolerance or even acceptance to outright celebration of quirky me, and… and this… this little guy catching sight of his aunt, and getting to show him the sensory room and the train table… and laughing with my big sister while we (totally uncharacteristically) stuffed his face with raisin cookie…

This is life, abundantly.  It comes from the combination that is the peace and joy and hope and faith and trust and love of God in me.  In other words, it’s not anything that depends on the out-there of it all, on the circumstances.  It’s everything to do with the One who is within.  He goes everywhere I go, and that’s why his promise is true… because with him in my heart, there is no way to have a life outside of abundance, no matter how strong the storms around me.

zelie fall festival 2


train table toto

“I came that they may have life, and have it abundantly” (John 10:10).

Note: I’m still pushing through school as planned.  I have less than a month to go to finish, and I plan to keep going and to maintain my 4.00!  My professors and advisor have been awesome.  I did have to reschedule Atlanta for December, and I missed a big reception for a state art contest my stitching won, but I do plan to make it to OCALICON and speak!  I’m beyond grateful for the support… logistical, financial, emotional, and everything else imaginable… of my family and community to keep me afloat until I’m totally back in business, which is closer by the day.  I know I’m behind on my usual advocacy stuff; if you’ve messaged me or emailed me, please know that I’m only just out of the major scary woods and still only awake maybe eight hours a day.  Medical care is my number one goal, then school, and third will be getting some work hours added back in (from home at first).  I know there are a lot of exciting new projects and publications and movements and things going on, and I’m cheering you all on but cannot commit to participating like I normally would.  It won’t be long, so please hold me a spot and I’ll be back to spreading quirk-dom and writing for anyone who will have me very soon :-)

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.  

This Writer’s Life

I’m finishing my second-to-last term in my grad program this week; after a one-week break (ten days if I push and finish up faster) and then another ten-week term, I’ll be the grateful recipient of my Master’s of Fine Arts in English and creative writing with a nonfiction concentration.  

I. Am. Burned. Out.  I can’t describe it and I can’t explain why I wake up in the morning and open Blackboard (the platform for my online program) and feel nauseous.  I use Facebook for two reasons, and the main one is a chance to write and connect with people through that writing.  I get nearly buzzed at the chance to put words together on that screen, and yet, click over one tab, and the guttural disgust returns.  I put out 10,000-12,000 words a week in coursework alone, and that doesn’t take into account blog posts, Facebook posts, editing work, magazine articles, work at the nonprofit center, emails… 

I love to write, and it is the most natural form of communication I know.  My most natural form of understanding the world is synesthetic experience, but that isn’t communicative, so, writing it must be.

I put together a 30-page final project today, and tomorrows will be closer to 60 pages.  Then it’s ten weeks.  One term.  

I love it, but excuse me while I go throw up.

It’s a funny thing, and I’m not sure where in the cyclical process to start my explanation of what’s funny.  I wrote the bulk of my thesis in this term, and early in that course, we talked about the transition from “student” to “writer.”  I thought to myself that surely I had made that transition sometime around when I published my first book.  And then I thought that I actually did the whole thing bass-ackwards (what else is new?  Hi, I’m Lydia, and I don’t every do anything the normal way…).  I published books before I ever took a post-secondary writing class.  Leave it to Lydia, and I say that with both a bit of pride and a hefty dose of eye-rolling.  I appreciate the ways in which I’m different in terms of personality and education and talent and vocation and identity, but I wish my body would be a little less different and at least have a disease that made sense to someone.

The other element in the cycle is that the idea of connection and intersection and greater meaning was a huge theme in the last few months.  My thesis started with that very idea, precisely stated.  I only had two classmates (minimal enrollment course), and one of them is writing a memoir piece that aims to subtly show the ways in which every life experience contributes to a greater meaning.  My thesis ended up veering in a different direction, but it started with intersection and, with that note in its conception, it will always have ties… because everything does.

I thought I was a writer and that the thesis process was a formal recognition of that status by the academic community.  Yes, you write, and we can verify that you have sufficiently completed so many credits of graduate-level work and produced and defended a worthy thesis and, now, we proverbially knight you with this piece of paper and allow you to teach undergraduate students about writing.  I get it.  And I don’t.  My mom often says, “It’s the spectrum in you,” when explaining any one of my innumerable quirks.  And, in this case… it’s the spectrum in me that makes it difficult for me to recognize societal practices that don’t always make sense.  But, I acquiesce without any argument in this case, because I so enjoyed the coursework and thesis process.  I did the first year of it from the nursing home, and it gave me purpose and direction and hope that I had a future.  That’s pretty invaluable, and so, whether I objectively improved my writing ability or not, I am ultimately grateful for the journey.

But, now, here is the funny thing.  I’ve written countless (okay, not really, because there is no such thing is truly countless… but, in this case, I use it to mean “I’m too lazy to technically count”) times on this blog about the fact that I can only truly process my experiences and my world when my hands are on a keyboard.  Until I’ve sorted through it in black letters on a white screen, sufficiently enlarged so that my eyes can actually read the font, life feels a lot like chaos and overwhelming sensory and emotional input and relentless, anxious expectation of the other shoe dropping.  

In the last weeks, I’ve found myself thinking, but not in my usual sensory impressions… I think in language.  I think the way I write, in that, just as I sit down to type and my brain begins to make connections from various, unrelated experiences, now, in quiet moments, my brain has begun to see those connections but without a keyboard.  I always thought it would be akin to painting with no brush… but, to take the analogy further, it might be somewhat like finger-painting.  I don’t have fantastic control over the linguistic swatches that run through my brain, and I don’t yet have the ability to compose in my head and then transfer verbatim on a keyboard.  I feel a bit like I’m replaying pieces a conversation in my head, only, they’re totally novel ideas.

What this changes is that writing has essentially invaded every corner of my existence.  When I make the bed or take out the trash, I weave together this experience and that one and find that words, actual words and not just sensory recollections, are popping up in relation to the connection between the two.  The result is that everything I do, I do with an eye toward writing and understanding and connecting, and, well, where is the separation between those things anymore, anyway?  Without consciously thinking about it, I live with the questions of what the thing means, what it has to do with what I already know or have already experienced, how it fits into my worldview, and how taking in facts or nuances about the new thing might affect my overall perspective on other things.  

Because that–THAT is what I do when I write.  Connect.  Intersect. In short, process.  

There is nothing we do or know or see or experience that isn’t woven into everything else.  Personally, that immediately drives me to worship the God who has control over all of it, from the kings of ancient Babylon to my kitty’s sore ear (which, thankfully, is better), from the heart-breaking situations the world over to the number of hairs on my head.  

I wonder if, now, I’m really a writer, or whether–much more likely–my experience of being a writer will change over time.  It is both cause and effect, as my identity changes in response to my life, while my life changes in response to my identity.  The holiest of hands weaves it all together.

Go Big… or Go Home

This post would be the “go big” part of that statement… no-holds-barred, taking the issues head-on.  It’s posted in full on my Facebook page, too.

Over, and over, and over, I hear parents say that I don’t know what “real” autism is like (oh, I guess my 20-some years of outright suffering was just because I felt like it) and that I’m standing in the way of their kids getting what they need. They say that their kids have behavioral issues and can’t communicate, and I say, “I believe he can communicate, and I’m happy to help you in whatever way I can to make that happen.” No one has EVER taken me up on that… but many do go on to continue to throw attacks at me. The very last thing I want is for any child or family to suffer. Not only that, but I’ll do whatever I can to turn things around. People don’t just refuse the help, they continue to be accusatory… and you know, I’m starting to think that people want to suffer, that it’s become a martyrdom. I don’t want to believe that, and yet I don’t know what else to believe.

“Cure” has become such a dividing word. I realize that, when parents say they want a cure, they almost always mean something different than advocates like me hear in the same word. Parents mean that they want to minimize their children’s suffering. They don’t want a different child, but they don’t want the child to be in pain, without a way to communicate, and self-harming.

I don’t know any advocate who DOES want children to be in those situations. The problem is that the one and only way we are anywhere, remotely, even on track to think about finding a cause, let alone a cure, is by way of genetic testing and a prenatal test. Essentially, the idea is that an unborn baby could be tested for his genetic risk toward developing autism, and parents would have the choice to abort. We have this ability with Down Syndrome, and the reality is that over 90% of fetuses known to have DS are aborted. Why are we kidding ourselves into thinking we’d see anything different with autism? I very well may have never had the chance at life. I very well may not know some of my amazing friends, some of whom can speak and others of whom cannot.

The thing is that, had such a test been available in 1987, my parents might have learned that I would grow up to need a feeding tube, IV support, have an ostomy, and an insulin pump. They might hear that I would be in constant, intense pain, that I would spend a lot of time in the hospital, and that I would need multiple surgeries and deal with severe fatigue, autonomic issues, fragile skin, joint pain, and be almost unable to eat. But, no prenatal test has the ability to tell my parents that I would love kitties to the extreme, write books, speak at national conference, earn my Master’s, or find a way, despite it all, to live independently. They would not know that I would have a deep, abiding faith and uncrushable joy. The tests can tell you all the bad, but they cannot and will never tell you anything about the good–the person.

I don’t for a second stand in the way of easing suffering, but my faith and my belief that my life is worthwhile, even with all the crap my body throws at me, mean that I will not stand in support of a test like that. Please don’t throw accusations of “not knowing what real autism is like” or being a “quirky genius” at me, as if I don’t know pain, rejection, and isolation. I don’t want anybody to suffer, and it breaks my heart when I see kids in crisis. I’ll do whatever I can to make good on my promise to help anyone who asks. Know that when you support a cure, in its current realistic possibility, and the organizations who are working toward it, by default, you’re supporting a prenatal test. I hope that, in the future, we have a way to ease suffering without undoing life. Until then, I’m glad we don’t, because no pain makes the joy not worth it.


Tests could tell you that all of this would be a part of my life...

Tests could tell you that all of this would be a part of my life…

... but not about the joy of having the cutest nephew in the world!

… but not about the joy of having the cutest nephew in the world!

...and not about writing my own books!

…and not about writing my own books!

... and not about friendship like this, or the Disney trips it would involve!

… and not about friendship like this, or the Disney trips it would involve!

... and not about autistic community like this!

… and not about autistic community like this!

... and not about faith like this.

… and not about faith like this.