This is Your Marriage on Hospital Drugs

The euphoric combination of Not Cancer and hospital drugs lasts maybe 24 hours, tops. And what a lovely 24 hours it is.

We drive home, all four of us, like we’re coming home from the airport or something, weary from some journey, more excited than usual by ordinary things. I find some recipe on the Internet and he tells me over and over again how good it is. The kids go off to play and we have a talk, a real talk, in which we challenge ourselves and think outside our respective boxes, trying on the roles of Grown Up Husband and Wife at the height of competence, taking challenges head on, discussing solutions.

The next day, though, it’s all about pharmacy bills and deductibles and how the hell are we going to pay for this business of aging, of holding ourselves together? Maturity wants to give way to petulance, and maybe that’s really the most logical path because you know what? It’s not fair. No fair.

I always thought it would be me. It always has been me, hasn’t it, from migraines to miscarriages to the various cysts and scares. And who knows, it still could be. But him. He’s too smart for all this somehow. Too logical. The sober yin to my raging yang. How did he get here? Neither of us quite knows how to handle this perverse role reversal.

While he retreats into Stoic Adolescent, I stumble upon an old role, the role of Woman About to be Left. It’s a strange place to inhabit again, after all these years. The lying awake through sheer exhaustion and exhilaration, an awkward nestle into an odd angle of his shoulder, yearning to sleep but savoring every minute holding this sleeping person, feeling his impending distance.

Which is ridiculous, on the one hand, because nobody’s actually leaving. There are dishwashers to unload, checks to write, tedious arguments to have, emotional cues to miss, lunches to pack. It’s not like the old days. When a relationship used to make you this sad, it meant the other person was Wrong For You and the only logical course of action was to move on, set yourself free into that world of possibilities, that sea full of fish.

But now? He is just that into you. And you’re just that into him. But sadness, sometimes, just goes with the territory anyway. It’s impossible not to grow through a lifetime together and not occasionally – unintentionally – break each other’s hearts. As long as there’s still love on both sides, as long as there’s still fundamental respect and kindness…you stay.

Does it hurt more, knowing that when we do ultimately “leave” each other, it won’t be by choice? Oh yes. Hurt doesn’t even come close to describing it. Decades away, we hope, but it seems to loom so near when we get these little hospital gown’d glimpses of mortality.

So…we put it out of our minds as best we can. Enjoy each other, savor all the little poetic moments, carpe diem and so forth. And…well…keep standin’. Through love and absurdity. Stój zawsze przy nim.

Destination Wedding

2001. Ours was the third in a series of family weddings that year. Boston in August, Newport Beach in September, and the grand finale in New Hope, Pennsylvania in October. We were living in Seattle by then, but most of our friends and family were still on the east coast. Destination wedding!

We’d just gotten back from the Newport Beach trip feeling so happy. Even on the drive to work that morning I couldn’t stop smiling, remembering all the fun we’d had and anticipating my own wedding – only a month away now. Even the AIRPORT CLOSED sign didn’t raise much concern or curiosity. Good thing we’d flown in the day before, I thought. I was handing out Disneyland souvenir pens to my co-workers when I first heard the news.

One sobering month later, we locked up our house in the dark and loaded our wedding-couture-filled garment bags into the airport shuttle van. It seemed wrong, somehow, to completely indulge the giddy anticipation and visions of sugarplums. The airport was nearly empty and eerily quiet. No one spoke as we waited to board our flight.

In Pennsylvania, American flags abounded. They hung on doorways, from cranes on construction sites, on lapels in ribbon form. Back in Seattle, we’d seen the same shocking images on CNN, felt the same deep sadness and confusion. But here in the northeast, it was raw. Real.

Somehow, though, a wedding was exactly what was needed. There were my sisters, my parents, and my old beloved Pennsylvania autumn. There was the man I loved so much, together for nearly four years at that point but still very much in the early wide-eyed throes of it. Everyone was so excited, so ready to come together and just be happy again, throwing ourselves into the joyful project of pulling this wedding together.

And pull it together, we did. Sunflowers. Baked brie. Falling leaves by the Delaware River. Chocolate raspberry cake. The best, most wonderful circle of friends and family. Pure fun. Pure love.

Life moved on pretty quickly from there. Our dreamy wedding gave way to the realities of marriage, and the dreamy “United We Stand” mood of the early post-9/11 weeks gave way to…well, you know.

Funny how those dreadful political years became the backdrop for some of the happiest, most monumental moments of our lives together. We were watching Fair Game the other night and I kept mentally comparing the story’s timeline to our own. That’s when we got married. That’s when I found out I was pregnant with The Boy. Et cetera.

Ten years.

I guess it feels like ten years – personally and politically. I can’t quite believe where we’ve been. I can’t quite fathom where we’re going. There will be joy and distance, absurdities and hope, setbacks and triumphs. It reads like a narrative, but really it’s a process.

Happily ever onward.

Above Average

“ELL, Special Ed, and an assortment of behavioral problems are mainstreamed on the backs of average students.”

This from the school board candidate I was supporting. I’d put up a yard sign and everything. Now it looks like I might have to go out there in the rain and rip that sign out with my bare hands because, excuse me, “mainstreamed on the backs of average students”?!  

Sigh.

I mean…I get it. I do. Teachers are spread incredibly thin. The more variables you dump on them, the less time and energy they have to actually teach. And, for what it’s worth, I was that so-called average student back in the day, sitting stoically through the chaos, sometimes learning, sometimes not, counting the minutes until the dismissal bell. And now I’m an average mom with an exceptionally brilliant, anxious, super-charged, sensitive, anything-but-average little Aspergian.

I didn’t mainstream him on anybody’s back. I hadn’t intended to mainstream him at all. Believe it or not, we special ed parents are just as afraid of “average” students as you are of us. You think I want to expose my little boy-child to the teasing, the judgment, the scapegoating, the willful ignorance, the ostracism? I pulled him out of general ed last year, not even knowing where the hell the school district would reassign him and not caring, because I knew it had to be better than where we were. I had no idea he’d end up right back in another general ed classroom at a different school, mainstreamed before we’d even had a chance to de-mainstream.

But you know what? It’s working for him. With a supportive principal, a caring and dynamic classroom teacher, support from a well-equipped special ed staff, and one very, very engaged mother, inclusion is working for my son.

Is it working for his “average” classmates, upon whose backs he’s supposedly been mainstreamed? Hard to say. I’ll admit that sometimes The Boy can be a downright pain in the ass. But having spent a fair amount of time in that classroom, I’m quite confident that he’s not the only one. Kids bump up against each other in all kinds of ways in a school setting. They cry, they tattle, they tease, they shove, they make the most unpleasant sounds and smells.

It’s not so much that the “average” ones have to endure the different ones; it’s that they’re all enduring each other. For the most part, they really do adapt to each other’s quirks and differences. They adapt a whole lot better than the adults do, that’s for sure. And they adapt especially well when the adults set a tone for acceptance.

Inclusion doesn’t work when the teachers resent it, the principals don’t support it, and the special ed services are spread thin-to-nothing. It sure as hell doesn’t work when other parents regard our very presence in the classroom as a threat to their “average” students’ academic success.

But here’s the thing: Inclusion isn’t going away. The school district wants it, most of the special ed parents want it, and it’s on the right side of the law. You can complain about it, you can hightail it to private school, or you can get on board to help make it work. Advocate for better special ed services and support for classroom teachers. Educate yourself about your child’s classmates’ disabilities. Volunteer in your child’s classroom.

Or…just take a moment to smile and chat with the special ed mom on the playground, even if she doesn’t have a friendly look on her face. Chances are she’s too nervous to reach out to you. Let her know she’s welcome. Because she’s a lot like you. And there may come a time when your child finds herself on the wrong side of “average.” How will you want to be treated by other parents when that time comes? Will you want to be seen as a burden, a label, part of the problem? Or will you want acceptance and a sense of community? Might as well pay it forward.

And now, if you’ll excuse me, I’ve got a yard sign that needs removing.

Fresh Start

So, here’s a new one:

Last week, mere hours before we’d planned to leave for Big Family Final Beach Weekend of the Summer, I had a meeting at The Boy’s new school. (I know, what a great way to get psyched for a beach trip. Pass the tanning butter.)

So, I gathered up The Boy’s IEP and behavior plan, the handout they gave me back in June, my list of concerns – oops, I mean, “questions” –  about this program and its appropriateness for him, and marched into that school ready to advocate.

Except…I didn’t really need to.

Somehow, over the summer – maybe thanks to the tireless advocacy of pioneer parents before me, or because school district lawyers successfully managed to explain “least restrictive means” to the administrators, or perhaps a rare alignment between school district politics and my child’s best interests, or maybe just plain dumb luck – the program changed. For the better.

• It is no longer a behavior intervention program.
• Enrollment in the program is now 80% autism/Aspergers students.
• The Boy is in a regular 2nd grade “gifted” classroom with support from an instructional aide  
• The old self-contained classroom is now a "learning center" where special ed students have access to pull-outs for extra support, as needed.

If I could have designed a program for him myself, this is pretty much what I would have done. Well…I’d have the day be a little shorter, the class size a little smaller, include a big block of time for Lego-building in the afternoon, and tell the parents about it in freaking JUNE so they wouldn’t have worried about it all summer long! But otherwise, it’s pretty darn close to ideal.

So, now what? There’s plenty more to worry about, of course. How will the pearl-clutching “not fair to the other kids!” anti-inclusion parents react to his presence? What if the “gifted” curriculum is too hard? What if the other kids exclude, or tease, or bully? What if he lashes out at them? What if this simply…doesn’t work?

But now, with the long-anticipated first day of school finally behind us, there’s a lot to feel optimistic about, too. The Boy was so excited to walk to his new school this morning. He’s so proud to be a second grader. His classroom teacher is a guy who seems to genuinely love teaching and was positively glowing when I picked The Boy up at school today. He’s happy to have The Boy in his class. The special ed teacher actually called me at home to tell me The Boy was having a great first day. (After I recovered from the shock and panic of seeing SEATTLE PUBLIC SCHOOLS on my caller ID, I was delighted with the news.) 

I know it could all go terribly wrong tomorrow, or next week, or months from now. All the more reason to savor it today, I suppose. And keep hoping for the best.  

Back to the Prairie

My summer reading list has been a strange combination of Aspergers this, special ed that, and…Little House on the Prairie? Not the books. Not the TV show. Books about the books and the TV show.

The best by far was The Wilder Life by Wendy McClure, in which the author and her boyfriend set out on a series of road trips to visit all things Little House. McClure delves into the beloved books of her youth, examining history and nostalgia; the books’ cultural impact and wide variety of fans; which parts were fictionalized; whether the books were mostly written by Laura Ingalls Wilder herself or by her daughter Rose; the books’ occasional cringe-worthy racism and politics; the sweetness and absurdity of Little House tourism; and the author’s own need to connect so deeply with the Little House world again in the first place. Loved it.

The other two books were more beach reads and Hollywoody than I usually prefer. But how could I resist Confessions of a Prairie Bitch by Alison Arngrim, who played Nellie Oleson on the TV series? Delicious. I wish I’d stopped with that one instead of slogging through Melissa Gilbert’s Prairie Tale, which read like a Twilight book without the vampires. Likeable enough, moderately introspective, but in the end I didn’t much care about all the boyfriends and Lifetime movies that followed her Little House career. Sorry, Half Pint.

Rather than plunge into Melissa Anderson (Mary)’s poorly reviewed The Way I See It, I’m thinking I might go back and read the later books in the Little House series: Little Town on the Prairie and These Happy Golden Years. I read them both during the summer between 5th and 6th grade – an awkward, searching, “crossroads” kind of time in my life for which I’ve recently, inexplicably, become rather nostalgic.

Then, as now, I was an anxious dreamer – yearning for adventures, but ultimately too freaked out by the whole business of dealing-with-other-humans to do much about it. So I wrapped myself in the comforts of bookworm solitude and the notion that things must be so much better on the prairie (or in Narnia, or Marilyn Sachs’ Brooklyn, et cetera).

The Little House books exemplified the very “simple country life” dream my family was striving for, with Emmylou Harris on our stereo and a brooder full of chicks in our living room. Reading those books was simultaneously escape and home…or escape to an idealized version of home. We already had the old stone farmhouse, the woods, the fields, the antique rocking chairs. All I had to do was glorify the mundane spaces with Laura’s wide-eyed narration; apply her pure sense of joy and wonder to my ordinary life.

That summer, as middle school drew nearer, I immersed myself even further in the Little House fantasy – imagining my shirts were long dresses, that our station wagon was a horse drawn wagon, describing my surroundings to myself in third person narrative prose. I’d read all the earlier Little House books about Laura’s girlhood. Now it was time to read about Laura as a teenager. It was the safest way to dip my toes in my own impending adolescence, wrapped in layers of braids and calico, buggy rides and sociables.

I remember holding on to the Little House fantasy well into 6th grade, willfully blurring the edges of my reality into a nice, gentle fictionalization. Maybe I was scared or overwhelmed, but I don’t remember feeling that way. I think I just really wanted life to be that joyful, instead of the raw mess of clanging lockers and flailing hormones and insecurities.

Looking at the covers of those later Little House books sends me right back there again, reading in my nightgown, yearning for my almost-teenage life to start but holding dearly to my summer. And – come to think of it – holding dearly to my childhood. Because, really, that was the last true summer of my childhood. The calm before the storm.

It’s nothing I’d ever want to relive. Yet I’m strangely, strongly compelled to revisit it now. Perhaps I’m just nostalgic for a time when I had the ability to escape and imagine. To delve into a jarring situation and soften it with idealizations and hope.

This isn’t the last summer of my children’s childhood. Not even close. But it feels like an end of sorts, at least with The Boy. I’m striving to see him, the real him, not my hopes and disappointments, not my advocacy for him at school, not the politics of Aspergers. Him.

And part of what I’m seeing is that even now, even at age seven, he’s miles beyond my grasp. I can’t impose peace and happiness on him any more than I could impose it on those noisy middle school hallways years ago. He is on his journey, not mine. I’ve always known that. But I’m only just now feeling the sharp truth of it.

Is it any wonder I find myself grasping prairie-ward again, seeking the comforts that got me through the first steps on my own path? Fasten your sunbonnets, pioneers. We’ll get through this one, too.
     

Welcome to the Cracks

Ever sit around just reading your kid’s IEP, trying to imagine how it actually translates to a happier child? And let me be clear…I’m not complaining about The Boy’s IEP. It was written by an excellent special ed teacher who was his biggest advocate and strongest support last year. She herself expressed frustration with the rigid nature of these things.

You can dictate what a child needs and what the school must provide – to a point. They can have X minutes of services here, Y minutes of services there. They can have a teacher with a special ed degree (or, apparently, a Teach for America recruit who’s successfully crammed for a special ed test). They can be in a small classroom with a high ratio of adults to students. They can have access to an aide (just hope you don’t get the bitter, disgruntled type).

It can look good on paper, but so much slips between the cracks. Because you can’t dictate human nature. You can’t dictate empathy, common sense, or even the slightest real understanding and acceptance of Aspergers beyond its stiff, inadequate textbook definitions.

Welcome to the cracks.

It would appear that I have been ever-so-slightly misled. Some of the misleading, I’m afraid, was my own doing. I was desperate to get The Boy out of his old school and into a situation where he’d have more support and understanding. So, I enthusiastically accepted a spot at our neighborhood school where, my contact from the school district acknowledged, it wasn’t exactly an autism-specific program and it wasn’t exactly an inclusion model. But she, the principal, and the special ed teacher offered enough reasons to make me believe it would be a good-enough fit, that they’d be flexible and do their best to meet his individual needs.

And who knows. Maybe it will work. But it’s not what I was expecting. For one thing, autism is a relatively new thing to this classroom. Half of next year’s students will be on the spectrum, but traditionally it hasn’t been that way. Traditionally, it’s been a self-contained classroom for neurotypical kids with behavior problems, and it’s still very much run that way – with the teacher and aides kind of figuring out how all this applies to autistic kids on the fly.

So…not an ideal fit. Hopefully not a flat-out freaking disaster, but not an ideal fit. I wanted autism inclusion. I was led to believe (and very much wanted to believe) that this program was similar enough, but it isn’t. Meanwhile, the school district wants to phase out autism inclusion programs entirely. I don’t know what’s going to happen going forward, but I’m puzzling out the details of Plans A, B, C, and D right now and there are several possible outcomes. Time will tell. Nobody ever said this was going to be easy.  

But in the meantime…welcome to the cracks.

We will start second grade at this school, in this program, as planned. The things I liked about it two months ago are still mostly true. And there’s still a chance that it might be a good fit for The Boy. My first action won’t be whisking him out of there. My first action will be trying to see if we can settle into these cracks we’ve slipped between and make it work for the time being. I’ll be navigating the system, but I will have both eyes firmly on the child himself. How will he thrive? What strengths can we build upon and what coping skills can we teach? Where will he find his small comforts and joys to help him through?

We made incredible progress last year. This coming year presents a whole new set of challenges, only some of which I can anticipate. Maybe someday we’ll have a school year where I can just put him on the bus and relax into my own day, but this isn’t going to be it. 

On the plus side, maybe this will be the year I earn my Ms. Special Ed Parenting America crown. Stay tuned…

Me and Disco Stu

“You have to go to the Tin Angel!” everyone insisted when I told them I was moving to Philadelphia. What can I say? I ran with a folksier crowd in those prairie-skirt wearing, WXPN-listening days.

So, after some early weeks feeling under-pierced and just plain lonely in the big city, I set out to find this place. I was such a country mouse in those days, I didn’t even understand about bars being closed on Sundays. Or that it wasn’t just a bar, anyway, it was a venue and I’d most likely have needed a ticket to get in. So, now what?

There was a coffeehouse/deli next door that was open. I decided to just sit with a big juicy mocha, contemplate this latest setback, and head back home in the spirit of “better luck next time.”

The place was nearly empty except for two middle-aged guys. One looked ordinary enough. The other was…well…the second coming of Saturday Night Fever. White suit. Baby blue shirt, half buttoned. Immaculately coiffed John Travolta hair.

His name was Phil. He introduced himself with exaggerated charm and immediately started hitting on me. I immediately started deflecting his advances with my trademark smirk and dumb-guy-repelling big vocabulary.

“Are you an intellectual?” he asked, throwing me for a loop. Raise eyebrow, hope he’ll go away. “Oh, be intellectual! It turns me on!”

I must have looked flustered, because his friend intervened at that point, trying to redirect the guy. Realizing it wasn’t going to happen, Phil turned around and yelled at me “You know what your problem is? You missed the seventies!”

“No, I loved the seventies,” I said. “I mean, I was only eight, but…”

And Phil Seventies went on a rant about how my generation isn’t any fun, with our “safe sex” and “irony” and “grunge” music/fashion. We just didn’t get it. His friend apologized and ushered the guy out the door.

Alone again. I supposed solitude was better than letting Phil Seventies seduce me with his disco-era charm simply because I was the only woman around on a slow night. No regrets letting that particular opportunity slip away.

But I wondered about him. How did he come to be in Philadelphia on a Sunday night trying to get laid in a John Travolta costume in an empty Food Tek, pissed that it’s not the seventies anymore?

Years later, I told the story to Mr. Black, who found it every bit as funny and baffling as I did. Was the guy really that clueless? Had he recently arrived in 1994 in his Delorean time machine? Was he coming from a costume party and just really, really committed to staying in character? My theory was simply that he was recently divorced, hadn’t been single since 1978, and assumed nothing had changed since then. But is that possible?

“It would be like you going to a club dressed as Kurt Cobain and yelling at everyone that they missed the nineties,” I joked.

And then we realized…oh wait. It is possible.

Well, not the going-to-a-club and yelling-at-people part. But in our own small way, we are now every bit as antiquated as Phil Seventies was back in 1994. We still dress in irony-T’s and flannel. I haven’t bought a new album since Sleater-Kinney’s last one. Today’s youth culture makes us cranky. We were watching the Homerpalooza episode of the Simpsons the other day and realized that we are Homer in that.

Bart: Dad, please. You're embarrassing us.

Homer: No I'm not. I'm teaching you about rock music. Now Grand Funk Railroad paved the way for Jefferson Airplane, which cleared the way for Jefferson Starship. The stage was now set for the Alan Parsons Project…

Replace those bands with Screaming Trees and The Cranberries, and here we are. We don’t even watch the Simpsons-of-today anymore; we just watch our old favorites from the early seasons on DVD. Hand me the Geritol.

I guess I can see why Phil Seventies was bitter. Aging really sneaks up on you. I feel every bit the same “me” that I was in my cute, smirky youth. But now I’m walking around in this fortysomething body with all these weird aches and pains in the morning. My spirit hasn’t changed, but everything else is changing all around me, constantly. And time seems to move so much faster.

I’m sure Phil felt like the same “Phil,” too. He used to feel at one with his time and place, and now it had just slipped away, replaced by a lonely weekend and some smart aleck hippie wannabe loner who wouldn’t give him the time of day. No more discos, no more Farrah hair, no more wild unbridled seventies-style fun. No more youth.

I get it, Phil. I still don’t want to sleep with you, but I get it.