Thursday, April 2, 2015

What Does "Autism Awareness" Look Like?

In honor of World Autism Awareness Day, here's a Floor Pie classic from 2012. There's a lot that needs to happen on the autism front, but I hope we can all agree that regarding children with ASD and their parents with kindness (or at least without resentment and judgment) is an important first step.


April is Autism Awareness Month and everybody’s got something to say, so I guess I’ll chime in too. This will be pretty simple, actually. I’m not going to ask you to “light it up blue,” or read up on the latest conspiracy theories about autism’s rise, or watch Temple Grandin (although that is a pretty fabulous movie). All I really need anybody to do – this month and every month, really – is to simply be aware of autism.

And, okay, something a little more complicated after all: Be aware of our own very deeply engrained ignorance, prejudice, and misconceptions about autism. Be aware that we may think we know…but we don’t. We don’t know much of anything. 

Yes, “we.” I’m a proud Aspergers parent myself and half the time I barely have a freaking clue. I try to second-guess and get it wrong (way wrong). I just plain forget sometimes that The Boy doesn’t like surprises – even really good ones. I forget that no matter whose birthday it is, he will always, always blow out the candles before we’re done singing “Happy Birthday” because he can’t stand the intense auditory sensation of a roomful of mixed-key singing. Sometimes I acquiesce to strangers out of meaningless politeness instead of sticking up for him. Sometimes I lose patience with him even when I know better. 

But I have to forgive myself and keep trying to do better. Aspergers parenting can be a counterintuitive endeavor. And if that weren’t challenging enough, most of us adults have a lifetime of misinformation and prejudice to overcome. 

We grew up in a time when “retarded” was a perfectly acceptable pejorative. We went to school in mostly non-mainstreamed classrooms and, as far as we knew, there was no such thing as an Aspergers diagnosis. There was a boy in my small rural elementary school who, in retrospect, was clearly on the spectrum. He cried and hit and grabbed the scissors out of our hands. He’d melt down at the slightest provocation. We all came to regard him as the “bad” kid in our class. Even me. I was painfully shy and had my own issues going on, but it felt good to feel superior to someone

In third grade, our teacher lost all patience with him and sent him to the principal’s office to be paddled. We could hear him wailing and screaming all the way down the hall and around the corner. It was awful. But somehow, we rationalized that he must have deserved it. An adult said so.


I was reliving that moment a lot when The Boy was younger. How awful it was to be on the other side of that situation, to watch his classmates sitting stoically, hurt and puzzled while The Boy pushed or grabbed or wailed his way through some perceived injustice or other. At least we live in a state where corporal punishment is prohibited in schools. But have we evolved much further than that? 

Right now, right here in touchy-feely lefty-loosey Seattle, elementary school special ed students are getting detention, and even suspension, because their behavior is routinely mistaken for defiance. It’s happened to The Boy. It’s happened to a lot of special ed families I know, autism or otherwise. When our children aren't proactively well-supported, those dominos go down pretty fast. They may feel extremely threatened and panicked and shift into “fight or flight” mode. What does that look like? Tantrums. Hitting. Spitting. Saying rude or hurtful things. Biting. Running away. 

We adults have a lot of baggage around those behaviors. We feel disrespected. We feel embarrassed. We feel our darkest insecurities being summoned by our inability to control the situation. Whatever deep-seated, subconscious childhood beliefs we may have about “bad” kids are unearthed. We feel like kids ourselves, being pushed around on the playground. We feel afraid. And sometimes, under the weight of all that baggage, we make exactly the wrong choice and only make things worse. 

It’s a natural human impulse, I think, to want to make someone feel bad for making us feel bad. That’s basically what punishment is. It’s not so much about teaching positive behaviors; it’s about making someone feel the weight of the “bad” thing they’ve done and suffer like we suffered. And maybe there’s a time and a place for that version of discipline. But this isn’t it.

We need to recognize our baggage for what it is, and we need to challenge it. When The Boy blows out the candles on someone else’s cake because he can’t stand the “Happy Birthday” song, even I think he’s being an asshole. But that assumption is fundamentally wrong. I can teach him better coping skills for being in a noisy room. But I can’t attach a moral judgment to his lack of coping skills. And neither should anybody else.

I guess what I’m saying is: What if we just assumed that a child is behaving badly not because he’s a jerk who needs to be put in his place, but because he has real challenges and needs a different approach? If we must jump to conclusions, let’s try jumping to an empathetic one. Let’s remember that the dominant culture decides what “social” and “normal” should be, but that doesn’t make expected behaviors come any more naturally to children on the autism spectrum. They're working very hard just to show up and be in the room with everyone else.

And instead of assuming the parents don’t know or don’t care, consider the possibility that we do know and care; that the misbehavior breaks our hearts; that we do everything we can to help our kids learn to function within the parameters of “normal” but it doesn’t happen overnight; that we can barely take a step without weighing the implications. This tends to drain our energy for faking shock and remorse over our children’s every autistic move in public. But for Zod’s sake, it doesn’t mean we don’t care.

Be a little patient. Be a little forgiving. Remember that you don’t really know. Nobody does.

And that, for me, is what autism awareness looks like.

Saturday, January 24, 2015

Apple and Tree

Anyone who knows me well knows that I am an outspoken supporter for autism awareness. Since The Boy’s diagnosis in 2010, I’ve worked tirelessly as an advocate and as an aspiring special ed teacher myself to bring empathy and acceptance to children like mine.

So perhaps I shouldn’t have been surprised when I learned that people have been fondly, lovingly, with the best of intentions I’m sure, theorizing behind my back that I am on the autism spectrum myself. A friend of mine told me about it, expecting I’d find it as hilarious as he did. And for a moment, I did. But when I opened my mouth to laugh, all I could do was cry. I mean, literally. I sat there and cried.

My friend was mortified, of course, and apologized sincerely with an outpouring of support and love, saying all the right things. I accepted the apology and had to admit, I was as surprised as he was by my reaction. Haven’t I been saying “We’re here, we’re weird, get used to it!” all along? Haven’t I acknowledged that The Boy is not the only one in our wonderfully wacky little nuclear family who has all these delightful quirks and challenges?

And, okay, you know. Maybe I am on the spectrum. I can’t deny that I have some of the notable quirks. I’ve openly admitted that my social skills were appalling well into young adulthood and still kind of are. I suspect that I had what we now know as selective mutism when I was young, although the adults just thought I was extraordinarily well behaved. My classmates hated me for it, though. Endless harassment. I couldn’t understand what their big problem was. Why would I talk just for the sake of talking? What would I say and to whom would I say it? Highly illogical, the whole business.

So, yeah. I was a big weirdo, which frequently annoyed the hell out of my mother and embarrassed the hell out of one of my sisters. I was pretty universally teased and bullied all the way into high school until about 10th grade, when I guess everyone found more fun things to do. I gradually managed to crawl my way out of it, finding theater, writing, music, crushes on boys, and dreams of one day moving far the fuck away from all this and never turning back. I grew up, I put it behind me, found my tribe, and moved on. The end.

Well, no. Not the end at all.

I was about one year into parenthood when I found myself rather a misunderstood outsider again, this time because of The Boy’s challenging behavior instead of my own. I think one of the reasons I fought so hard for him was an unconscious raging against the way I had been marginalized myself as a child. There was nothing wrong with HIM, and there was NOTHING. EVER. THE FUCK. WRONG. WITH ME.

I had research on my side this time, and everything I was learning in parent ed classes, and the excellent work of disabilities rights activists who’d come before me as well as my contemporaries who fight more bravely and outspokenly than I have. We’ve made a fair amount of progress in the five years since receiving the diagnosis.

But even now, even as I’m building a stronger and stronger base of knowledge and skills at one of the best graduate schools in the country, we struggle just like anybody else struggles. There are always going to be adults who take his autistic behaviors at face value and find him offensive and ill-intentioned. The fact that he’s growing into rather a smart-ass isn’t helping any. But at least he has more fight in him than I did. I’m so proud of him. I’m proud of both of us, quirks and all.

So why did I cry?

I guess it was the shock of still, STILL being held to a mainstream standard after all the progress I’ve made. I may feel comfortable and happy in my own skin now, but I’m never going to outrun that little weird girl that nobody liked. And even though people have learned to appreciate me for my novelty-act appeal, they still basically identify me as “other,” even if it is with love.

It hurts because of all the baggage attached to it. I love being different, but I didn’t always. Being different caused me more than pain. It caused me to grow up simply, stoically believing that there was something fundamentally wrong with me; that I was “less than,” unworthy, and incapable. I wasn’t trying to be different. I simply was. I simply am. This is the only way of being I’ve ever known. I can’t…not be this way. I don’t even want to not be this way.  

So, now what? Soldier on, I guess, secure in the knowledge that at least most people like me for my weirdness now instead of hating me for it. I suppose I could pursue an official diagnosis, but to what end? Having a label to put on it would have been useful when I needed social skills and executive functioning support as a child. But I doubt it would make much difference in my life now, other than providing me with a different sort of soapbox.

Which leaves me pretty much where I was before I was aware of any of this. We’re here, we’re weird, get used to it.




Thursday, January 1, 2015

Welcome to the Year


“Welcome to the year your baby will be born!” said the prenatal yoga instructor one brilliantly sunny January morning eleven years ago. All around the classroom we gasped or laughed nervously, teared up in grateful disbelief or smiled blissfully, simply knowing it to be true.

Never mind those resolutions about eating healthier and being more goal-oriented at work. Such a major turning point was waiting for us by year’s end, there was barely any point in resolving to change. Change was coming for us, resolutions or no.

I’m hard pressed to think of another new year where such definitive change awaited at the end of it. Well, except perhaps this one.

I have an awful lot of feelings about finally embarking toward a career I love at age 45, many of which involve shame and embarrassment. What took me so long? What was I doing with myself all those years? All that education, all those accomplishments, and here I am a 45-year-old student teacher? Don’t look at me.

There’s pride and gratitude too, of course, at having finally found a meaningful path that flows so earnestly with my true skill set and passions. And I’m very good at it. I just am. I’ve never in my entire life had such strong, simple conviction of my own self-worth. It is an amazing feeling to have after all these years, and better late than never.

And…there’s fear. Once I’ve earned my M.Ed. and endorsement at the end of the summer, the goal is to find a job as a special ed teacher. And then…well…I’ll be The Special Ed Teacher. Not only that, I’ll be The NEW Special Ed Teacher. Everybody loves The New Special Ed Teacher, right?

Yikes.



As a special ed parent myself, I know frighteningly well how much responsibility is going to rest on those shoulders. The special ed teacher can make or break an entire school year. The special ed teacher can make or break an entire child. There are immense and terrifying expectations in front of you. If you’re lucky, there is support. But it’s just as likely you’ll find yourself surrounded by a school community that waits anxiously at the sidelines, hoping you will be magic but worrying or maybe even cynically expecting that you will crash and burn instead.

One of my instructors last quarter, a Ph.D. student who got a very early start in her special ed career, was surprised to hear that I find this degree of responsibility daunting. “I guess I was lucky in some ways, being that young and na├»ve when I first started,” she said. “I just went in and WAS the teacher. I was the leader. I set that tone, and everything just sort of fell into place. I had no idea at the time how arrogant that probably seemed, but I did it and it worked.”

Can I do that? Can I brazenly walk into a school with the hopeful/cynical/resentful eyes of teachers, parents, administrators and aides on me and just…be the teacher? Would it work? I’ve seen new teachers get their asses handed to them, confident and skilled or not. I want to believe that somehow I’ll be able to avoid the typical pitfalls with my special ed teacher superpowers. But it’s not an easy world I’m venturing into.

Yesterday, for example, a car and a bike collided on my street. The driver was hysterical and furious...with ME, because she'd seen me starting to back out of my long driveway and had slammed on her brakes for that reason (even though I wasn't in the street and had, in fact, stopped backing out to check the road and was never in any danger of hitting her). The cyclist collided into the back of her car because he couldn't stop in time. He wasn’t hurt. But this driver came up to my car, banged on the window and scolded me so relentlessly that I believed for one terrible moment that I was the one who'd collided with the bike.

Somehow, in the face of that accusatory scolding, I was able to be entirely calm and treat her with kindness and sincerity. Everything got resolved nicely. The driver warmed up and stopped trying to fight with me as she realized there was no fight to be had. The cyclist enjoyed regaling us all with stories about the collisions and near misses he's had. I overheard the driver talking to her insurance company and gradually realizing, as she told her story, that it wasn’t actually my fault. And when the police officer finally arrived on the scene, he was as kind and reassuring to me as if he was my dad or my coach or something. All's well that ends well.

But the whole experience left me feeling shaken, a little angry, and afraid. There are people out there just READY to be that angry at me, READY to blame me for a terrible thing that I truly, truly didn't do. And here I am, poised to assume the role of The New Special Ed Teacher.

There's a certain parallel there that's striking. People blame teachers in much the same way that people blame the other driver in a collision. And whether we're right or wrong, it really doesn't matter very much. People see a teacher and they see...what? A lazy union member who needs to be held accountable? A cruel standardized-test-giving Common Core lackey? Every bad teacher they or their children ever had?

I don’t blame them for their mistrust. As teachers, we do hold a tremendous amount of power. We have the power to define our students, almost. Each one brings a wide spectrum of strengths and challenges to the table. What are we able to see in them? Which parts are we able to bring out and which parts do we inadvertently inhibit? What will we notice and what will we completely miss about them? And what will we report back to their parents?



I’ve had teachers tell me wonderful, glowing things about The Boy and I’ve had teachers regard him as if he were the second coming of Voldemort. At a recent IEP meeting with The Boy in attendance, I cheerfully asked the team to share something they love about working with him…and was met with a long, awkward silence. It’s not that they dislike him, exactly. I think the IEP process, and school in general, has just become so deficit-focused that it barely occurs to anyone to remember that there actually are positive things to say about the students.

Practically every teacher I’ve ever met – and I’m ashamed to admit I’ve done this myself sometimes – labors under the delusion and the extreme frustration that the parents somehow don’t see what we see or don’t take it as seriously as we believe they should. We’ve all, at some point, bought into the misguided notion that somehow the parents don’t know or don’t care (or REFUSE to know and REFUSE to care). And so, with the best of intentions, I’m sure, we special ed parents often find ourselves on the rather unpleasant receiving end of a well-meaning “wake up call” from the school.

I said this years ago, and I’ll say it again:

[I]nstead of assuming the parents don’t know or don’t care, consider the possibility that we do know and care; that the misbehavior breaks our hearts; that we do everything we can to help our kids learn to function within the parameters of “normal” but it doesn’t happen overnight; that we can barely take a step without weighing the implications. This tends to drain our energy for faking shock and remorse over our children’s every autistic move in public. But for Zod’s sake, it doesn’t mean we don’t care.

So, yeah. I get it. I get why parents who’ve been subjected to these misunderstandings and assumptions of bad parenting year after year are going to be a little prickly when The New Special Ed Teacher comes along.

I want so deeply to be worthy of this task. I believe that I am. But I also understand that even with all our skills and passion; even with our resolve to be Jaime Escalante Meets Anne Sullivan Meets Mr. Kotter, no one gets it right 100% of the time. There are so many variables, so many contexts and unknowns and unavoidable learning curves. All I can resolve at this point is to bring my absolute best to the job, and to ebb and flow with the challenges with a loving and fearless heart.

Things will go wrong. Things will go right. I will bend and change and learn and get better and stronger every year.

Just like I have as a mother. Could I have known, all those years ago in that sunny little prenatal yoga class, all the ups and downs of the road ahead? No, I could not. Did I pretty much kick its ass anyway? Yes. Yes I did. And this year, I resolve to do it again.

 Welcome to the year.



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