A Toast to New Orleans

by Jill Wilbur Smith

My husband, Gary, marvels that I recognize the anniversary dates of the death of my loved ones. When November 15, rolls around, the day my father’s heart gave out while he was hunting with his best friend, Gary is always mildly surprised that I want to recognize the day. On the anniversary of my father’s death, I often raise a toast to him with whomever I happen to be with on that day, whether they knew him or not.

Gary, Emily and Sarah on the Riverwalk in November 2004.

Gary, Emily and Sarah on the Riverwalk in November 2004.

But I’m finding it difficult to do the same for New Orleans on this 10-year anniversary of Hurricane Katrina. Maybe it’s because New Orleans still exists. Unlike my father, who only lives now in my memory, New Orleans is still there, just altered. Although the wound of Katrina has healed with time, remembering it is painful. Every tweet and news story pokes at my scarred flesh until if spews fresh blood.

My dad had an infectious laugh.

My dad had an infectious laugh.

So I’m trying to think about why I remember my dad on the day he died. I don’t relive that moment when Gary hands me the phone in our Minnesota home, ashen face, mouthing the words “your dad died”. But rather I think about my father’s infectious laugh, replay our conversations around the kitchen table where he taught me by example what it means to be a generous human being, remember the look of love in his eyes the first time he held his granddaughters.

And so, that’s how I’ll try to live this day. I’ll not dwell on the image of the Superdome I watched endlessly from my home in Minnesota, my heart breaking for the displaced and frightened souls huddling on the bridge that connects it to the office tower where I once worked. I’ll remember instead that place on a brighter day, picture me sitting in the sun on a bench with a co-worker, enjoying the company and the sound of the city around us.

My in-laws' New Orleans home, before the flood.

My in-laws’ New Orleans home, before the flood.

I’ll erase from my mind the vision of my in-law’s home covered in water, the Google map image Gary came across days after the storm that showed the rooftop of his parents’ house bobbing in a neighborhood of water; the look of disbelief and shock on his face as he tried to choke back his tears. Instead, I’ll think of the Sunday dinners held there when we were newlyweds, how we brought Emily there to meet her grandparents, our visit only months before the storm for Thanksgiving when Sarah helped her Grammy organize her linen closet. I’ll try to forget Sarah three days after Katrina hits and the city is filling with water. How I was trapped in my bedroom in my suburban Minnesota home glued to the television with the drapes drawn, paralyzed by grief; the tap on my bedroom door and 9-year-old Sarah entering carrying a tray. How on the tray was a cup of hot coffee, a piece of toast with butter and jelly, and some wildflowers in a vase. “I know you’re sad, mommy,” she said. “I thought this might cheer you up.” I’ll remember instead how I turned off the TV and opened my arms to her, how her warm body snuggled into me as she reached up to wipe the tears from my cheek. I’ll think about how I reminded myself that my life hadn’t been damaged, that I was secure in my home with my children and husband.

My father-in-law playing the piano with Emily and Sarah.

My father-in-law playing the piano with Emily and Sarah.

I won’t think of my mother-in-law sitting in a hotel room in Northern Louisiana, watching the same footage I watched as the only place she’d ever known was washed away. I won’t recall my husband grieving for the loss of his hometown. At least I’ll try. Perhaps if we still lived in New Orleans the pain would be less. But I suspect not. I suspect that once a place is gone it’s gone for good. The new construction and cleared lots won’t ever return the city to the place we once loved. The magical place where we fell in love, got married and brought our beautiful daughter into the world.

My father-in-law, Sarah, my mother-in-law and Emily during our last visit to New Orleans before Katrina.

My father-in-law, Sarah, my mother-in-law and Emily during our last visit to New Orleans before Katrina.

And so as we mark this anniversary, I try to remember the good things that existed and still exist in New Orleans. The memories of the good times we had there can never be taken away. Only altered. Just like I’ll never again be able to sit across the table from my father and hear his booming laugh, we’ll never again visit the New Orleans we once loved. Instead, we’ll have to take comfort in the memories we made there. We’ll raise our glasses in toast to the city we loved.

Autism: My First and Deepest Closet

by Emily Smith

When my parents first inspected the house that would become my childhood home, they took stock of its ample rooms and inviting backyard. They pored over the kitchen and wondered what color to paint the bedroom. They momentarily lost track of their two-year-old (me), whose first inclination had been to hide in the broom closet.

I liked that closet. Extrapolating from the way I loved small spaces as a slightly older child, I imagine it made me feel safe. I craved the cool dark, the enveloping silence. I marveled that no one could reach me. I stood in the closet and giggled, and I did NOT want to come out.

Well, I know how to come out now.

After decades of confusion about my own romantic proclivities, namely how they never seemed to take bodily equipment or gender into any account whatsoever, I’ve decided that “pansexual” best describes me. Well, actually I say “pan.” It’s a small and innocuous shortening; it rolls off the tongue nicely and I find it cuter. “I’m pan.” Adorable. Maybe I should find some little cheap pipes and a fluffy fake tail for Halloween so I can be Pan then, too. Tee-hee.

It’s nice to be able to disclose this in my writing at last; I finally feel “unstuck” and capable of discussing any topic I need, including my girlfriend! (Unless she gives me permission to use her actual name, she will be addressed on this blog as Lovey. Because she’s my lovey.) She is the best and that is enough about her for now.

Disclaimer: I do NOT fall for literally everybody. Don’t troll me with questions like that. I still have standards, including the raw physical attraction that manifests toward some people and not others. Man/Woman/Other just isn’t anything I find influential in that.

It’s funny to look back on my latest coming-out process now (not that coming out is ever really finished; you always have to keep doing it). I’ve done this whole song and dance three times now, after all. I think I finally have the process down. And these days, I get to be in love the whole time.

Still, three closets is a lot, and I hope I don’t end up needing another. Allow me to elaborate.

Most recently, it’s been the whole sexuality spiel. I could’ve kept shut about it for a bit longer, but then I met my girlfriend and the label became more important. Dating another woman sort of forced me to know and understand what label fit. Am I a lesbian? No: I still like men. Does “bisexual” fit? Nuh-uh. There are lots of cute and exciting people in-between the whole Man/Woman binary (including my girlfriend sometimes). So it became “pan,” and I’ve had to explain a great deal about that, to a great many people.

Before that, there was the issue of my not believing in any immortal/religious sort of stuff, and what exactly I wanted to call that. I usually say I’m “secular” now because it fits. I am a creature of this world and not any possible worlds to follow. And I am at peace. Why would I waste a second of my life lying about that? (My truth is not necessarily your truth. But denying one’s own truth is always tantamount to lying.)

Once again, there’s this issue of what to call myself. “Secular” seems easiest, safest, and most accurate. In this country you can’t really say “atheist” without traumatizing half the Christians in earshot. Even if you’re like me and don’t mind forcing a confrontation sometimes, it is not worth the effort most of the time, because “secular” means exactly the same thing with less charge, and trying to reassure people about the state of your soul on a daily basis is exhausting.

I’m not one to pander to privilege – and believe me, if you’re an American who believes that Jesus Christ is your lord and savior, you hold so much privilege that you might not even be able to see it. You don’t always see it because you don’t always see people like me. It’s often not worth bringing up, and constantly being asked to repent or convert or otherwise apologize for existing, is just too hard for too many of us. But that is a topic for another time. The point is, this closet gets very scary too.

I don’t hide in my secular closet, but I keep it well-stocked with humor. At times, the words “heathen” and “infidel” come off their hangers. I enjoy them. The bafflement of believers at my peace with mortality, my relative lack of existential pain, can be a source of interesting thoughts and even amusement. I mean, what else can you do when confronted with these crusaders so incessantly? Wherever you fall in the clash, you have to laugh at the predictable way this dynamic plays out.

But my first closet was never so funny. My first closet of all, my first and deepest closet, was autism.

Yup. Being diagnosed as autistic, living as an autistic person, includes its very own walk-in closet, complete with door for varying degrees of openness.

I still remember the initial barrage of questions that pelleted my brain. If you’ve ever come out of a closet, you’ll recognize them.

What am I supposed to call myself?

Who do I tell?

Does this make me weird, or broken, or somehow not as good?

Who already knows? Who suspects?

What if everyone is judging me?

Who will be my friends?

Am I safe?

Why don’t the other kids understand?

How do I go on living now?

I felt inordinately depressed about the whole thing, for a very long time – ten months by my count. But somewhere in the middle of that, I started doing work with a therapist I liked. I liked her enough to work with her for ten consecutive years. I also joined an advanced math program, won English Student of the Month for the April poetry unit, and most importantly, made one really solid friend. Those formative experiences yanked me out of the Abyss and into something resembling a life.

Since it happened to me so early in life, and influenced my identity so much, the autism diagnosis left a pretty humongous closet behind. I don’t need too much more closet space than that. So in subsequent uncloseting attempts, I’ve downsized and decluttered. My other two closets are full of kitschy knickknacks and neatly folded towels. They’re not as scary as the first one. So here’s my advice to all the people with scary closets.

First, peek out of your closet. Can you show your closet to people who will help you? Maybe people whose closets look a lot like yours? If you can “find the others,” as Timothy Leary once said, you’ll be in better shape to tackle the rest of the project. You don’t have to sit in your closet alone.

Second, figure out what room your closet is in. Closets don’t spring up all by themselves. There is space surrounding them, space that defines the closet and makes it useful. How does your identity inform your life? Which of your friends and loved ones can get close to you in this regard? Not everyone in the world can share your closet, but the ones you love can stand in the adjacent room. They can help you chuck old junk out; they can help you pick out sweet new outfits. Unsupportive people will ransack your closet, and that really hurts. But you’ll probably find that most people you care about will smile, grab your hand, and take you shopping.

Third, make it part of your home. You can go on living with your swanky new closet. You can open and close its doors whenever you want. You can choose to deck yourself out in its colorful clothes… or you can let its snug walls be your shield, sometimes. You can put together a costume of stereotypes… or you can dress pretty much like everyone else, and savor the world’s surprise. You can do all of these things.

Nobody should live in a closet. But if you have a closet… use it, and use it all.

Learning to Love Across the Divide

by Jill Smith

When Emily was born, I searched her face to find the familiar. Did she have my eyes? Was the shape of her nose like her father’s? As she grew, I monitored her behaviors as well, wanting her to like the same foods I liked, laugh at the movies that I thought were funny. I hoped that this beautiful child we had created would be like us, only better.

What I didn’t expect when I gazed into Emily’s face was that there would be something deep in her that I wouldn’t recognize. I couldn’t imagine that there might be an aspect of my child that was unfamiliar, that I wouldn’t understand.

I think it’s human nature to want our children to resemble us, for it to be obvious to others that they belong to us because they share familial traits. So what happens when they don’t? What happens when a child is born with a condition such as dwarfism, deafness, autism or transgender identity?

In Andrew Solomon’s book Far From the Tree: Parents, Children and the Search for Identity, he offers guidance for how to understand and bridge this gap by asking us to consider the concept of vertical versus horizontal identities.

Image result for far from the tree

“[M]ost children share at least some traits with their parents,” he writes. “These are vertical identities. Attributes and values are passed down from parent to child across the generations not only through strands of DNA, but also through shared cultural norms. Ethnicity, for example, is a vertical identity. … Often, however, someone has an inherent or acquired trait that is foreign to his or her parents and must therefore acquire identity from a peer group. This is a horizontal identity.”**

Autism, for me, is a horizontal identity. I confess that one of the biggest challenges of being Emily’s mother is accepting that she doesn’t experience the world the way I do. Learning to embrace that difference has also been one of my greatest joys.

Most parents, Solomon states, learn to “love across the divide” created by horizontal identities. Through habit and love a mother grows to accept the unfamiliar nature of her child as commonplace.

She also assumes a new identity as the parent of a child who has a horizontal condition. The mother then has a horizontal identity from her own family. The apple hasn’t fallen far from the tree, but has rolled away. Often, these parents look to peer groups to acquire these new identifies.  That, for me, has been a challenge.

I don’t consider myself to be an activist. I’m not out to find a cure for autism or lobby our leaders for disability rights. It’s not often that I stand on my soapbox and rally against The Man. I rarely follow the latest research on the causes of autism or add my voice to either side of the ongoing debates about why autism rates are skyrocketing. I’ve never joined a support group for parents of children who have autism.

My focus has been much more introspective. I simply want my daughter to live a happy life.

Solomon says stories of families who have horizontal identities “point a way for all of us to expand our definitions of the human family.” So I’ve been pondering my societal responsibility as the parent of someone on the autism spectrum. Do I have a moral obligation to share our experiences in the interest of improving the lives of generations to come? And if so, what do I want you to take away from my experience?

For me, it comes down to this.

I want you to accept and love my child with the same sense of wonder, compassion and awe that I do. I want this because it will make Emily’s life happier, but my desire is larger than that. I hope that if you can understand Emily by seeing her through my eyes, you’ll also have a deeper understanding of the next person you meet who has autism.

So I write to share how I’ve learned to love across the divide that separates me from my daughter. I don’t share our stories to elicit pity, but to help expand the definition of the human family. I write in the hopes that our stories might help others who encounter identity differences find a way to cross the horizontal divide as well.

**Solomon, Andrew (2012-11-13). Far From the Tree: Parents, Children and the Search for Identity (Kindle Locations 86-88 and 94-95). Scribner. Kindle Edition.

Who’s Teaching Girls to be Angry?

by Emily Smith

Now, you might have read the above in one of two ways.

The first of these ways is “come on, the internet’s full of angry feminists! Check Instagram and check Tumblr! They’re all crazy! I can’t stand it! WHO is teaching these stupid women that they need to be angry?”

This is probably not how most of you, our audience, would have read that. But certainly, it’s a view often proliferated, even encouraged, both in the dark recesses of Internet anonymity and the broad daylight of our quotidian lives.

You may even have read that tone into it without wanting to – that’s how loud this viewpoint can scream. It’s an exercise in privilege, and in irony, that boys and men in their usual environments can sometimes express so much anger… about someone else’s anger. The point, of course, is that they have the right to this anger. And women don’t.

So I’d care to illuminate the other half of this question, the genuine half, with honest concern and bafflement. Who IS teaching girls to be angry? Their parents, their teachers? In many cases, nobody. In most cases, not enough people.

In fact, this general failure to teach productive anger gets so entangled with our gender that even the words we use for “not getting angry” are domestic, traditionally effeminate in nature. We do not restrain our emotions; we bottle them. We do not build up resentment; we stew it. We do not sort out our feelings; we prune them like roses, sift them like flour. We boil over in our overwhelm. We cook up stories. We throw babies out with bathwater. And so on.

I claim a new language for the anger of women. A strong language. A dark, wild language. I am not “steamed,” “strained” or “drained” because I am not pasta. A thick-funneled vortex churns away at my heart and threatens to swallow it up, because I am a storm. And if you believe storms are fickle (as oh, so many do), you fail to understand weather.

Storms follow iterative rules; each molecular movement of the cloud depends upon the movement before it. This is why meteorologists run their simulators so many times, why the predicted path of a hurricane grows increasingly narrow as it approaches the shore. The possibilities appear chaotic, yet are mathematically predictable.

The path of a storm is a fractal.

The path of my anger is a fractal. Each measurable state depends upon the measurable state before it. And so I think it must be with “angry feminists” in our current sociopolitical climate. No one has given us the right to be angry (or feminists anymore, for that matter). No one has predicted us; no one has stood watch for our storms. And because there are no plans in place, we devastate the land.

To paraphrase Alexander Pope, “to anger is human; to believe, divine.” As human beings, we deserve our storms. One deserves a natural pattern of behavior, a climate to call one’s own. Even the sunniest of dispositions will occasionally darken, and even the darkest are not on constant tornado watch. As we know in this environmentally conscious world (or at least, we ought to by now), prevailing climate offers a range of variance. It is not the same as daily weather.

Certainly we all wish for fair weather, relative warmth and sunlight. This is a mercy in our lives, hence the dead metaphor of precipitation as “inclement.” Yet we understand that the elements of nature do not offer us eternal clemency. We watch, wait, and prepare.

I therefore advise all women and men expressing the storms of their lives: brace for those of others as if they were inevitable, because they are. Look out your windows; check your local listings.

Plan for the weather you see.

Right for Change: The Tranformative Act of Writing

by Jill Wilbur Smith

Emily’s post about “failing faster” made me contemplate my own writing process. Or more accurately these days, my lack-of-writing process. I agree wholeheartedly that fear of failure is one of the things that keeps me from writing. But I also have a slightly different take on it.

For me, every act of writing is transformative. I’m a different person after a writing session than I was before I started. That’s especially true about writing creative nonfiction, memoir or this personal blog. But I also find it true when writing fiction.

IMG_2713The act of finding the right words to describe an emotion, recall in precise detail an event from my past, or create a character who comes alive on the page is exhausting. And some days it’s too much for me. In fact, many days it’s more than I can face.  [Just now, I stopped for a full 4 minutes to reflect on this, to prepare myself for change.]

Change is good. I understand that. I get it. It’s important. But it’s not necessarily something I want to do every day.

Imagine if you had to change your breakfast every day. Not necessarily in a big way, just a small change. But different every day. If you have cream cheese on your bagel on Monday, you have to choose a different topping on Tuesday. You might get cranky. You might not want to change. There will come a day when you crave the comfort of the cream cheese. But you can’t go back. And if you do, it won’t ever be quite the same again.

That’s how writing is for me. When I share a story about coming through a difficult time with Emily as a toddler, I forever cement in place that moment in time. If I’ve remembered something with less than perfect accuracy, I’ve in some way changed the event itself. And I’ve rearranged something in the very fiber of my being that makes me someone different than I was before.

I think that’s why I tend to write in bursts. I’ve tried to have the discipline to write every day as my enthusiastic daughter suggests. In fact, I finished a novel mostly by writing in 20-minute sessions every morning. But for the most part I write in bursts of hours or days on an essay or a piece of fiction.

I write when I’m ready for change. When I know I can handle a new me.

I also write when I need to change. I write when a painful event crushes me, threatens to annihilate me if I don’t push back, lift the beast off my back, wrestle it to the page and put together the words that give it shape and meaning and allow me to move on.

I write when I’m ready to be transformed from the fearful one to the one who knows she can handle anything.

“Put your mask on first, then help the child.”

By Jill Wilbur Smith

I hate seeing my daughters in pain. It’s possibly the most difficult aspect of being a mother. Seeing my children in pain and being unable to do anything to fix it. That’s the ultimate definition of helplessness for me. And for someone who craves order, who loves to always be in control, that’s excruciating.

When my children or husband are in difficult situations, I often jump in with both feet and try to redirect some of the pain towards myself. I try to absorb their pain, thinking it will ease their burden. Of course it rarely does. Then I feel helpless and in pain myself. And exhausted. And frustrated. And did I say helpless?

So I give up things that I would normally do for myself and devote all of my time and energy to them. Then I get resentful. Then I feel guilty. Then I’m exhausted. Which leads to helplessness. Wait. Did I already say that?

I’m going to try to stop doing that. I don’t know if I can. But I’m going to try.

I think about my own life. I can’t think of a single time in my life that I made it through a difficult situation because I let someone else claim my pain as their own. It doesn’t work that way. No one can really take away your pain. You have to simply feel bad until you don’t feel bad anymore.

Of course you can listen. You can make soup or offer a hot beverage. You can perform random acts of kindness. You can hold the tissue box and rub a back while the person in pain cries. But their pain will always be their pain. Not yours.

A few months ago, I saw a therapist. I told her it was because I didn’t want to feel left out. But really I just felt a little at a breaking point. I’ve tried to absorb so much of the pain of my family that I felt overburdened. She gave me some good advice.

“You know when you’re on an airplane,” she said, “and the flight attendants go through their safety spiel. They say ‘In the unlikely event that the oxygen masks deploy, be sure to put your mask on first before trying to assist others.’ That’s what you need to do. You need to make sure you’re wearing your own mask before you can help others.”

She’s right. I need to take care of myself so I can be there to care for others. I need to make sure the oxygen is flowing freely to my lungs so that I can be healthy and energized for those around me who need me.

For me, that means taking time to meet with friends. Making space in my day and in my home to write. Saying “no” when I don’t really feel like doing something that my spouse/daughter/friend/coworker asks me to do. Occasionally putting myself first. Taking deep breaths and making sure my heart is full before assisting others.

Fail Faster: A Change of Plans

by Emily Smith

The creative process and formatting of this blog isn’t working for me. So I propose an altered schedule, to revitalize our writing. Specifically, my own writing. I’ve posted here without my mother’s review, and indeed, without much revision. Sorry, Mom. I guess “autism” really is Latin for selfishness. But I HAVE to get this out there. I HAVE to get this seen.

The collaborative nature of this blog means that the two of us spend a lot of time talking to each other as co-authors before anything gets posted. But that also tends to mean, if we can’t find time to actively collaborate, nothing gets posted. We stagnate, regardless of whose turn it is or who has what posts done. I’m having a lot of trouble with this paradigm. It’s not working.

So I’m posting something every day now. Here are my reasons.

1. I feel compelled to do so. As a creative type, I find that listening to such compulsions usually yields ideas worth sharing.

2. Time I spend writing, especially for this blog, is time I always get back. It fuels a more productive day than I’d have had otherwise. That feels like I can do MAGIC with my time. I put an hour into the spell, and I get two more hours out of it. It’s a fountain, an unwinding clock, a wormhole of constantly regenerating time. It could make me immortal if I did enough of it.

3. Whenever I’m awaiting an editing session, I sprout this gnawing fear of failure. It makes me so twitchy inside that I can’t write anything good. At least, I can’t write what I think will be good enough. Robin Williams tribute? Not topical enough. Description of my day? Nobody wants to hear that. Generic post about a particular autism difficulty? But I could post that anytime! Where’s the perfection?!

But NO creative idea is perfect. Explained on their face, a lot of creative ideas are really bad! Check THESE out!

A video game about a plumber on drugs!

A play about two guys on a bench whose friend never shows up!

A novel about a bumbling old Irishman that’s full of nonsense words! Like the Odyssey, but NOT!

A picture of six hookers, but in the shape of REALLY ugly cubes! And the one in the corner is like, ten times uglier than the other five!

Yeah, let’s go there. Let’s make all that.

And we’ve got Super Mario Brothers, Waiting for Godot, Ulysses, and Les Demoiselles d’Avignon, respectively. They’re works of media we love. They were gamechangers. They became classics in their genres. They made Nintendo, Nintendo. Made Picasso, Picasso. And they’re all totally weird ideas that probably met a lot of failures on their way to the final iteration.

Which is why I need to FAIL FASTER.

Failures transport us between Points A and B. FAIL FASTER.

Failures give birth to human interaction about those same failures. They spawn conversation, spawn revision. FAIL FASTER.

Failures on job interviews might get me down, but they’ll point me toward the authorial success I strive for, and deserve. FAIL. FASTER.

Mom, you can post as frequently or infrequently as you want. I am here to help. I’ll also be asking you for your opinions on these posts as much as ever. I hope you’ll be here to help me as well.

But I need. To fail. Faster.

And if you’ll pardon me, gentle readers, I’m off to my part-time gig, where maybe I’ll fail some more. Just as long as I’m failing faster.

Happily Ever After Starts Here

By Jill Wilbur Smith

Last Labor Day weekend, we attended my niece’s wedding in Michigan. It was a beautiful affair, held in a barn on property that’s been in my brother-in-law’s family for generations.

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About three hours into the evening, my sister came up to me looking concerned. “Emily just got upset and said she was leaving,” she said. In the old days, I might have gotten upset myself and frantically looked for Emily to try to calm her down. But on this night I didn’t.

“She’ll be OK,” I told my sister. “I’ll check on her in a while. Don’t worry. Go enjoy your party.”

Then I got another drink and continued to mingle with family. About 30 minutes later, Emily emerged from the house. She had found a quiet corner in which to sit and recharge. She came back to the party happy and calm. I was glad that I hadn’t run after her.

I’m trying to put an appropriate amount of distance between my daughter and me. I don’t mean that I’m abandoning her. I’m simply working to let her find her way. Because I’ve learned that the way she navigates out of painful situations is rarely the way I would guide her.

That’s difficult for me. I always want to help. To soothe. To be the one to listen and make all of the bad feelings go away.  But that’s asking too much of myself. And expecting too much of her.

So, I’m trying to give Emily the space she needs. To understand that she doesn’t always enjoy being in a throng of people, even if those people are family. That the way she connects with others isn’t the way I connect with them. Her happy looks different than mine.

Earlier this summer we attended the wedding of one of my other nieces. It, too, was a joyful affair attended by almost every member of my extended family. I could have danced all night, raising my red solo cup in song and toasting the happy couple.

As much as Emily loves her cousin, the evening was too much for her. But unlike the year before, Emily didn’t get upset and disappear. Instead, she calmly said to me “I’ve had enough for tonight. I’m going to go wait in the car.” I gave her a hug and told her we weren’t ready to leave, but that we’d join her when we were.

I gave her the space she needed, but I didn’t sacrifice my own needs in the process. And it was OK. No drama. No stress. No guilt. Just two women defining happiness in their own terms and accepting their differences.

That might seem like a small thing, but for me it’s significant. It’s taken me a long time to accept that the things that make me happy aren’t always the same as the things that bring Emily joy. That reality used to make me sad. I felt that Emily was missing out on an important part of life. But I now recognize the fallacy of my belief. I’m beginning to accept that her happily ever after, although different than mine, will be happy. I confess that I still have my moments of longing, but it’s a start.

 

 

“Get a Clue”: An Aspie’s Need for Specificity

By Emily Smith

The following is a compilation of several phrases that Aspies hate, in no particular order:

  • Be nice.
  • Try and “wow” me.
  • Do something.
  • Just make an effort.
  • Get a clue.

Here’s why we hate them. At least, here’s why I hate them. I’m guessing that a lot of Aspies agree with this designation of hatred, but for now I’ll speak for myself.

Consider the following. How many different things can each of these phrases actually imply? One person’s nice is another person’s nosy, so what kind of “nice” am I supposed to be? Even the most concerted effort can be useless if the approach is wrong— so how should the approach look? The “wow” factor is going to be unexpected and indescribable by nature, so how is telling someone to embody “wow” anything but useless? And finally, my personal least favorite. Get a clue.

A clue about what? How am I supposed to know? I hear that phrase as “hey! Learn what I’m thinking about, right now! Just go ahead! Learn that particular thing, with zero prior knowledge of it!”

Is that really supposed to be easy for me? How is that easy for anyone? Are there big blue pawprints on said “clues” that I just don’t see?

In a lot of cases, it turns out that there are. Social cues provide context that NTs have a lot less difficulty decoding and translating into corresponding actions. Aspies don’t have that, even if we learn the rudiments of it. If you’re frustrated with me, for example, I’ve learned to pick up on that. I pick up on that very much. It distresses me. I do not want you to feel frustrated about my behavior. But unless I’m told what the problem is, I probably don’t know what to do about it.

In the Harry Potter universe, there’s a device called a Remembrall. It’s a little glass ball that fills up with red smoke when its holder has forgotten something. The fatal flaw of the Remembrall is that forgetful people, who need its reminders most, don’t always get what they need out of it. As the absentminded young Neville told his classmates, “I can’t remember what I’ve forgotten.”  That’s more or less how I feel whenever I’m told something action-oriented, but vague. I’m glad to know I’ve failed to do something, but I have no idea what the something was.

Take this for example. I’ve been living at home for a long time now, which isn’t exactly a picnic for any of us, but for now it’s working. I always did chores and errands around the house when asked, so for the longest time I didn’t understand that my parents felt unappreciated. My demeanor still appeared ungrateful. After a year of miscommunications, in the messy aftermath of all our bottled feelings exploding, we finally landed on the idea that adults do chores without being asked.

That’s pretty dumb, right? Rock-stupid obvious. Most people my age would understand that after a year of living at home, or living anywhere with other people. I feel bad about not having known that, but I really just needed to be told that this was an ongoing social expectation. So I finally learned that, and I fixed it. I even found a part-time job and I’m actually moving out soon. I’m doing what others tacitly expect of me. I remember.

If you’re an NT who gets bummed out by Aspie behavior, try and take this with you. The way a lot of us tell people’s feelings is kind of like a Remembrall. Are we cool? Okay, Remembrall’s clear. Are you mad? Frustrated? Did we forget to do something? Red smoke. What’s it for? I don’t know. Panic, panic, panic.

Help us not panic. Remind us what we forgot.

How I Sometimes Forget That My Life Includes Autism

by Jill Wilbur Smith

Sometimes I forget that I’m the parent of someone who has a disability. Call it denial. Call it hope.

On good days, it’s easy to believe that I’m unaffected by autism and depression. On good days, it’s easy to think that my world is just like everyone else’s. On good days, it’s easy to forget.

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Then a bad day comes along, as bad days are wont to do.

If the good days have been many, strung together in a brilliant and dazzling display of calm and joy, the bad days hit hard. Crashing down on me with an unexpected force. Taunting me. Don’t forget, they tease. Life isn’t meant to be easy.

Rationally, I know that bad days aren’t reserved for families who live with disability and depression. Bad days aren’t particular. They happen to everyone.

But in that irrational, emotional place inside of me, they feel vengeful.

I’ve had a lot of good days in the past two months. I need to remember that. My mother and sister joined us for Thanksgiving. I got a promotion at work. I had a joyful Christmas spent quietly with family. I celebrated New Year’s by kicking in the ass the dark times of the past 12 months, hopefully thinking a new year will mean no more bad days. Silly me.

Maybe that’s why I’m especially saddened by the day that occurs only 10 days into 2014. What makes it a bad day is a confluence of events that might not be troubling had they all happened separately.

I’ve had an especially busy day as I transition into a new job. I’ve mostly ignored text messages from Emily in the afternoon indicating that she’s struggling. I hope that by the time I get home the storm will have passed and we can have a quiet evening. I’m at the end of my emotional tether.

I walk into the house to find Emily’s bad mood hasn’t passed. In fact things have escalated into ugly confrontations between her and her father and sister. They, too, have had a less-than-stellar day.

So, in my already emotionally fragile state, I forget that I’m the parent of someone who has autism and depression. I forget that the angry young woman lashing out at me isn’t really condemning me. She’s fighting some unseen demon that I can only imagine.

“I just want peace,” I scream at her.

“I don’t want peace, I want justice!” she replies.

I’m too exhausted to pick up my sword and help her slay her beast, whatever it might be. I turn away. I go downstairs and drink a cocktail with my husband. I leave her to cry herself to sleep alone in her dark room.

For a few more hours I pretend that she’s just choosing to be obstinate and defiant. I make believe that there isn’t a chemical imbalance in her brain that has been adversely affected by the dark Minnesota winter. I ignore the injustice I feel knowing that Asperger’s makes it difficult for her express her sadness in a socially appropriate way.

Later, I crawl into bed and turn out the light. As my eyes adjust to the darkness, I know that in the morning I will shed the mantle of denial. I will somehow find the right words to help her see through her depressive haze. I will have the strength to pick up my sword and continue to fight.

P.S. Many good days have followed since I wrote this post, with the occasional bad day thrown in to remind me of my special place in this world.