Friday, April 18, 2014

Weight


I have kind of made my peace with it. And kind of not.

There’s irony here, for sure. It’s never about what the scale actually says, or even whether the clothes actually fit. It’s about how you feel. And for the last several years I have felt, to be honest, great.

I survived the stress and confusion of The Boy’s early undiagnosed years, I brought myself back from the brink of a rather nasty nervous breakdown with Zoloft, therapy, running, and marathon viewings of “Community” Seasons 1-3. I got my house in order –  literally, cleaning out a basement whose mess predated our ownership of the house – and remodeled our third theoretical bedroom into a literal one, making it possible for us to keep living in our cozy urban bungalow instead of moving to a bigger house in the burbs. And, of course, I found my way back to work in a career that I absolutely love.

Through these happy years, I was gaining. It was gradual. And barely a concern, to be honest. I had no room for it anymore, no room at all for the self-hatred and self-punishing attitude that drove my fitness in the past. I got heavier. But I felt more gorgeous and free than I’d felt in…ever. I didn’t care. What I did with my body belonged to me. Yoga, or not. Dessert, or not. It was based on what I wanted or didn’t want at any given moment. My body. My choice.  

Lately, though, my choice has been that this is heavy enough. The last couple of gradual gains have felt a little uncomfortable. Not unattractive. Just a bit physically uncomfortable. I don’t want to gain anymore. I wouldn’t mind losing a little, in fact.

I thought I knew how to do this in a healthy, self-loving way, with lifestyle choices and so on. So I picked the day I would start and woke up with a kind-but-firm determination to simply eat and move with more intention. Seemed reasonable enough.

But my psychological response to these moderate self-imposed limitations was anything but reasonable. It was fierce, insulted, positively raging with self-doubt and anger. There was anxiety, jealousy, impatience, deep sadness, restlessness, fear, bitterness, and an underlying sense of betrayal. Just like that, I’m at odds with this body again. It’s as if I don’t trust it anymore.

How long did I hate my own body? Too long. Starving it in desperation during the teen years, fantasizing about just slicing off whole pieces of it, trying to drive out every last badness in myself, as if badness only takes shape in fat cells. And even though there were plenty of times in my adulthood where I took a more kind, self-loving approach to fitness, that’s not what the body remembers. It remembers being hated and starved and slashed at angrily, and it absolutely REFUSES to go back there again without a fight.

So, here we are. I was happy. I got too heavy. Must I become unhappy to be less heavy?

When I think about it, most of my more triumphant weight loss episodes happened under duress. A break-up, usually. The sheer humiliation and loneliness was enough to drive me to work my body into what I believed was a more sexually viable shape.  

The only exception I can think of is, strangely, during The Boy’s first year when I lost all my baby weight and then some. I wasn’t even trying. Honestly. But somehow, between the breastfeeding metabolism and daily postnatal yoga and all those long, dreamy walks with him in the Bjorn, the heaviness just melted away. I was thinner than I’d been in years.

I’d hoped this would happen again after my pregnancy with Little Grrl. I did everything exactly the same. I probably exercised even more because I was chasing a two-year-old around and those long strolls with the baby were considerably less dreamy. I even gave up dairy for nine months to accommodate Little Grrl’s sensitivity to it in my breastmilk. But the heaviness was with me to stay. And after a while, I kind of stopped caring about it. I was happy, after all, and loved. Somehow that made it easier to let it go.

And what about now?

Somehow I need to push past my own fierce resistance that associates fitness with self-hatred and shame. Not easy to do when that’s how I’ve always motivated myself toward fitness in the first place. But it has to be done. Can I somehow find a way to believe, deep in my heart, that yes I am loved, yes I am good, and yes I will accept some moderate self-denial in my daily life? I mean…that’s totally reasonable, right?

Well, I hope so. Because I’m not really up for going deep into the psyche to untwist whatever’s twisted in there. Wish me luck, gentle readers. Luck, strength, patience, self-kindness, and…what the hell, how about a few sincere compliments, too? It couldn’t hurt.



Sunday, March 30, 2014

Episodes of Inclusion


Hallway
I was walking a sweet little first grade girl back to her classroom when we crossed paths with an older autistic student who was having a rough start to his morning. I tried to set a blasé “nothing to see here” tone with my body language, but she still gave him a look of wide-eyed curiosity. He responded by stepping as close to her as possible, looking right in her face, and announcing “You’re a BARF BAG,” before walking back to the special ed para who was with him.

I took the girl’s hand and calmly kept walking. When we were out of earshot I said “I’m so sorry he said that to you.”

“It was a little weird,” she said, looking at me with a mix of amusement and fear, seeking my face for a clue as to which was the appropriate response.

 “I know that boy,” I told her kindly. “He’s a really, really good person. He’s just having a bad day.”

“Oh!” she said brightly. “He’s kind of like Joe.” (Joe is a first grader in our school’s special ed inclusion program. Not using his real name, obviously.)

“Joe used to say mean things to us, but he’s doing so much better now,” she told me proudly, as if she were a member of Joe’s IEP team herself. “And he’s spending more and more time in our classroom!”

Every trace of fear and curiosity was gone from her face. Joe was already a part of her community, and she was able to extend that understanding to another student who was very much in need of it.


Recess
Charlie (again, not his real name) was a first grader at one of the first schools where I subbed. His favorite recess activity was running around the perimeter of the playground, over and over, deeply immersed in Batman fantasy. Sometimes the other children asked him to play, but he’d just keep running as if he hadn’t heard.

One day, though, we were delighted to see him playing Batman with a small group of boys. I was about to go on my lunch break. The other para had come to take over recess duty for me. We paused in our changing-of-the-guard routine to proudly admire our little dude running happily with his newfound pack.

And then…our little dude pushed a kindergarten boy flat on his face on the blacktop. The parent recess volunteers came running. One of them swooped the kindergartener off to the nurse’s office. Charlie was just standing there looking utterly confused.

“I’m sorry,” he said reflexively. And then, as if trying to figure out where he’d gone wrong, he explained “He told me to get him. He told me he was the bad guy.” 

The other para calmly took Charlie aside to explain about literal versus figurative “getting the bad guy.” I was about to head back inside for lunch when I saw the kindergarten victim return from the nurse’s office and sadly take a seat on the curb. I sat beside him.

“Are you okay?” I asked.

“Yeah,” he said glumly. “I guess I’ll have to watch out for that guy.”

“His name is Charlie,” I told him. “Did you know that Charlie is just learning how to play with other kids?”

Learning how to play?”

“That’s right,” I said. “Everybody’s learning in school. I’ll bet you’re learning how to write your letters and numbers in kindergarten, right?” He nodded. “Well, Charlie knows how to write his letters and numbers. But he doesn’t know how to play Batman with other friends yet. He didn’t understand that you’re just supposed to pretend-hurt the bad guy. You already know that.” The kindergartner nodded proudly. “Maybe if you decide to play Batman with Charlie again sometime, we can all help him learn.”

He liked the idea of helping a first grader learn something. And he went off to enjoy the rest of his recess.


Camping Trip
This story inspired me greatly in the early days of The Boy’s diagnosis. It’s about a 5th grade camping trip, and how an autistic student’s classmates supported him as he completed a challenging team-building game. The boy’s father and writer of this excellent piece concludes:

They grew up with someone different and knew well what he needed. And they knew they could provide it. They learned tolerance, empathy and confidence that they could help those in need.

When the time came for The Boy’s 4th grade class to take their camping trip, this story was at the front of my mind. I made the very earnest, well-intentioned mistake of asking our principal to assign me to be the special ed chaperone. She made the very earnest, well-intentioned mistake of agreeing to it. I was the only special ed staffer, and also the only special ed parent. What could possibly go wrong?

What, indeed? The Boy, who’d been having a very successful school year up until that point, went off the rails before we’d even boarded the bus. He started arguments. He responded explosively to teasing. He latched onto one friend and responded with Medea-level jealousy if that friend spent time with anyone else. He ran off into the woods by himself. He yelled at the parent chaperones. He cried himself to sleep the first night in the cabin assigned to staff because he couldn’t handle being in with the other students.

The parent chaperones tried to be polite about it, but I could see the strain and confusion on their faces. By the end of the trip, one of the moms had pretty much had it with my son, my stressed-out attitude, and the whole lot of our autism inclusion students. “They’re not the only ones on this trip,” she snapped at me as I tried to juggle their competing quirks and needs.

There was one bright spot, though, and that was the NatureBridge program itself. Our group’s camp instructor took The Boy’s behavior in stride, or at least had a world-class poker face about it. When he walked right up to her in the middle of a lesson and started examining the compass around her neck, she gave it to him to wear. When he chose to sit by himself on a log instead of journaling, she gave him space. When he charged up the trail ahead of the group, she offered him a huge walking stick and encouraged the other students to join him. He and about five gung-ho students led our group all the way up to the top of the mountain.

By the time we’d reached the top, The Boy was chatting happily with students he’d barely even acknowledged at school. Our instructor set the tone for focusing on his strengths. His classmates and The Boy himself quickly followed suit. And even though the trip was extremely challenging for him, that’s not how he remembers it. He still talks about what he learned about nature and how much fun he had climbing the mountain. As difficult as it was for me personally, I count the trip a success.

Learning
This is the time of year when parents are trying to choose elementary schools for their prospective kindergarteners. A preschool teacher friend of mine told me that sometimes parents express concern about my elementary school because of “all the special ed kids.” They worry that our special ed students will make it hard for their “normal” children to learn. They worry that perhaps their “normal” children might not be safe. This teacher has tried to convey a positive, accepting message, but wasn’t sure it had been successful. Did I have any advice?

You’d think I would have had lots of advice. But the question just made me cranky and tired. I feel like I’ve been talking about this for years. I feel like sometimes it’s all I ever talk about. I’m kind of running out of things to say.

Look at the stories above. I told them in a positive tone, but will a reader who’s afraid of “all the special ed kids” be able to see it that way? At the core, what do we really have here? A “normal” student got called a name in the hallway. A “normal” student got pushed down at recess. The “normal” students had their 4th grade camping trip disrupted.

We all know, of course, that special ed students aren’t the only ones doing the pushing, name-calling, and disrupting. But yes. This happens. Inclusion can be messy. I’m not going to pretend that it isn’t.

What should go without saying, of course, is that school is messy, period. Life is messy. Relationships are messy. Any time you let other humans into your life, guess what? Messy!

But that’s where the real learning happens. Those students who had run-ins with their autistic classmates? They learned a real, authentic version of empathy that they’re just not going to get from those Second Step flash cards and puppet shows. Real learning isn’t all pristine and quiet and well-coordinated. Real learning is spontaneous. There’s an urgency to it. It’s organic.

I can’t say it any better than this dad did in his piece about the camping trip:

Will the skills of tolerance and empathy help these kids in their academic life? Maybe not. Will they help them in the business world? I've dealt with enough CEOs to know that these are not requirements for the job. But if we are trying, as parents and teachers, to grow menschen, people of integrity and honor, then I saw some wonderful evidence of success.

I’m proud of my school for serving autistic students with understanding and fairness, and I’m extremely proud of the students themselves. Every single one of them. What incredible, well-rounded, empathic adults they’re going to become.

Happy Autism Awareness Month.



Saturday, March 8, 2014

Acceptance

I must admit, I feel a little foolish. By all accounts, this is not exactly an ideal time to embark on a teaching career. And yet, here I am, all bright-eyed and Fräulein Maria, ready to do just that. In September I will start working on my M.Ed. in special education at the University of Washington. I got my acceptance letter a few weeks ago and have been walkin’ on sunshine ever since.

It’s been nearly two years since I hatched this hare-brained scheme of mine to reinvent myself as a special education teacher. Inch by inch, I’ve carefully stepped through one hoop, then another. I spent last summer studying for the GRE and WEST-B. I slogged through grad school applications and the tedious process of transferring my Pennsylvania teaching certificate to Washington. I volunteered and subbed, taking extremely challenging assignment after extremely challenging assignment, finally finding a full-time parapro job at my kids’ school.

Want to have a big juicy existential crisis? Try going from being a special education parent/advocate to working in a special education program in a large urban public school district. What a trip. What a humbling, baffling, heartbreaking, face-in-the-mud trip.

And yet, I’ve loved every minute of it. It hasn’t scared me away. It’s made me stronger and forced me to see a much wider, more complicated world than the one I thought I knew. It has super-charged my faith in human children (and somewhat resolved my faith in human adults). It’s taught me to recognize the small successes that happen every day, and to embrace them for the miracles that they are. It’s showed me the endless mountains of work that still needs to be done. It’s let me accept that I still have a lot – a lot – to learn. And, yes, there have been times when it’s made me feel a little broken and deeply sad.

But here we are. This is my path. I’m sure of it. I started out as a teacher, gave it up too soon, spent the next 20 years trying other things, and somehow found my way back here again. This is absolutely where I belong. It’s a calling. And when you feel this passionately about something, you feel everything deeply. The good and the bad. The sad parts, the frustrating parts, the downright demoralizing parts – it feels that bad because it’s lighting you up in the first place. You care. Don’t avoid it. Go even deeper. There’s something in there that needs you.

Saturday, February 15, 2014

Love is All Around

It gets discouraging sometimes. I’m not going to gloss over that part. I get tired of scrambling every morning to make everyone’s breakfast and lunch and get my sorry butt out the door on time, tired of chasing the 5th graders out of the cafeteria after the late bell rings, tired of cajoling our little dudes through task completion for work they find so entirely distasteful that it’s hard to imagine any real learning is happening in the process (beyond learning how to complete tedious crap you hate – which, one could argue, is something of a life skill). 

At the same time, purely amazing things are happening. I’ll give reading assessments to little dudes with heartbreaking backstories who came to us barely able to read at all, and they blow the lid off that thing, reading like rock stars and so damn proud of themselves. Or I’ll be working breakfast duty and the boy who spoke no English at all last year walks up to me with a determined look on his face and declares “I want to know the difference between ‘whoops’ and ‘whoopsie’!”

Or we’re told that we have to prepare our struggling 1st and 2nd graders for a Writers’ Celebration in which each child is expected to write a book. And the lead teacher and I will panic and wonder how the heck we will ever pull it off…and then we do. For weeks, we slog through the writing process with our little pumpkins. They tell us their stories with humor and imagination and wonder, and we teach them how to write the words. And finally, they get to see their books on display for the whole first grade and their families, and you just about cry with pride and happiness.

That’s how we wrapped things up right before school ended for winter break. I was the happiest girl in the world. I loved everything and everybody. 

Then…it was over for two weeks. Things got strangely quiet. Each day I felt further and further removed from the joyful, absurd chaos of school. And when school started up again, the magic had somehow drained away almost completely. I’m not sure why.   

I was beginning to think it was never coming back. I was beginning to worry that maybe September through December had been one long honeymoon phase that was now past, and all that lay ahead was weary crankiness and tedium and the vague sense of fear that I’m falling further and further away from the ideals that drove me here in the first place.

I was sitting in our classroom office earlier this week filling out a pile of incident reports from morning recess while the lead teacher gathered our students on the rug for the day’s writing lesson. It had been such a cranky morning.

And then I noticed something. The students were all, each and every one of them, intently focused on the teacher. All of them. Even the ones who usually can't stand writing and rarely participate. Even the ones who can’t sit on the rug without spinning in a dozen circles or carrying on a full-volume conversation with someone across the room. Every single kid had their eyes on the teacher. Every single kid raised their hands again and again to offer more ideas.

The topic was Valentine’s Day. The teacher explained a little bit about the holiday, but really captured their attention when she told them we’d be having a Valentine’s Day party on Friday. After a few moments of letting them delightedly call out their favorite party treats, she drew a heart in the center of the marker board and showed them how to write “I love you.” And then, she built a story web with hearts instead of bubbles, filling each heart with examples from the students about who and what they love. (Mom! My brother! God! Cotton candy!)

Our old friend Teacher Tom recently blogged about how his preschoolers enjoy painting heart-shaped pieces of  paper at their easels, first following the basic shape of the heart, then delightedly saturating the paper with color. He wrote about how this business of literally “filling the whole heart” is like the process of love itself.

And that is exactly what happened in our classroom that day. All the students cut out paper hearts and practiced their mad writing skillz on them. And then, just like their preschool colleagues, they absolutely saturated those hearts with color. Every student. I can't tell you how rare that is for us, to have every single student so thoroughly independently engaged in a project. The room was so busy and happy.

And then, as they were lining up for recess, one of the boys who’s often so deeply sad and angry came up to the lead teacher and gave her a huge, spontaneous hug. Another boy did the same. Then he came into the classroom office where I was still mired in paperwork and gave me a huge hug too.     

Later that day, at the end of my social skills lesson, I gave the students a compliment for how well they'd waited turns and listened to each other. A boy raised his hand and asked if he could give his friend a compliment too. “I like when you play games with me on the playground,” he told his friend shyly.

Then another boy raised his hand and offered a compliment to the girl who’d done very well at the game we just played. More hands went in the air. Everyone had a sincere, unique compliment to give to everyone else in the room. The bell rang to end the day and they were still sitting criss-cross on the rug, hands waving in the air with more and more compliments for their classmates.    

Is that all we needed? Another candy-and/or-love-themed holiday? It certainly brought out the best in our class this week. One of my favorite little dudes who straight-up hates school and wishes he were anywhere else but here was so happy this week. “It’s a Valentine’s school!” he announced with joy as we decorated our paper bags. Later, when he was helping me get the table ready for our party, I noticed he’d been dangerously generous in distributing chocolate hearts to each place setting.

“Let’s just have one chocolate heart on each plate,” I suggested.

“Let’s have TWO chocolate hearts!” he countered.

I agreed to two and asked him how many we’d need to take away to make two. Little dude’s been struggling with subtraction for weeks now. But darned if he didn’t tell me exactly how many chocolate hearts we needed to subtract to get two. By the time we were ready for the party, he had it down. At least when it came to chocolates.

How do we keep that spirit of love and candy and emergent-based subtraction with us? It’s a long stretch of weeks with no candy-related public-school-appropriate holidays in sight. I think we’re just going to have to make it happen on our own. Somehow, within our relentless schedule and IEP goals to meet and Common Core standards to uphold and tops to race to and children to not leave behind…somehow we need to actually grab those children’s hands and reach them.

Maybe, at least in our classroom, that looks like building more fun into our school routine, holiday or not. We don’t need an official calendar holiday to celebrate each other and take some time out of our routine for a little enjoyment. And when their hearts are open, when their spirits are lifted like that…they can do so much more and learn so much more, and seamlessly.  

If it takes me the rest of my career, I am going to find a way to reconcile this practice  with the public school context. We’re already doing it here and there, in the cracks, accidentally or maybe a little bit on purpose. Maybe it’s the Valentine’s Day chocolate overload talking, but I have hope.

Sunday, December 22, 2013

When the World Was Flat


Our story is not our story anymore. It’s been fifteen years, fifteen, since I landed in this green and silver city mired in misty rain and started a new life as part of a couple. Loved. Found.  

At the time, it felt like being rescued. I’d found my tribe…my tribe of two. Mr. Black was, and is, the smartest person I have ever met. He never told me I was too deep, or too sensitive, or too feminist, or too ridiculous for being a vegetarian. He never said “you think too much” or told me to “relax.” He never made me feel like I had to reign in my own intelligence to spare his ego or his interest. Best of all, he wanted to be with me as much as I wanted to be with him. And we were beautiful to each other. It was easy. Like falling.   

Fifteen years ago, I thought I was leaving everything behind on my way to a new and better life. In retrospect, it was more like a long, slow, luxurious dive deep down into my own little undersea fantasy world. In a good way. In a very good way. I will always treasure that time below the surface when Mr. Black was my world in the best of all possible ways. You can’t sustain that mythology over a long-term relationship, but it can always be true in its own way, in its own time and place.

And I hadn’t left anything behind, it turns out. You resurface and there it all still is, floating in the soup one way or another. Long lost friends from high school and college live in Seattle. New friends I met through Offsprung live in the next county over from my parents back in Pennsylvania. Facebook has unearthed just about every old familiar face I care to remember. The software company I’d worked for in Philly hired me back as a telecommuting freelancer after I had my first baby. And somehow, most miraculous of all…I finally found my way back to teaching.

It has been one year since I was hired full-time at my kids’ school as a special education instructional assistant. It hasn’t always been easy, but even on the roughest days I am positively soaring. I love how my body feels in a school, striding down the hallways, hustling up and down the stairs, helping gently, inspiring and amusing boldly, walking backwards making the “quiet coyote” with my fingers as I lead our class in from recess. I love what I can do with my voice. I love the visceral, protective, nurturing relationship I have with all the little bear cubs in my charge. I love that my strongest assets are no longer just cute little quirks but completely necessary in this career. I am absolutely, without question, happier than I have ever been.   

And I no longer need or want to be rescued. Yes, I still need a friend and partner to give me hugs at the end of the day and pick up the kids and go grocery shopping. Yes, we still love each other a lot. But that love doesn’t drive us like it used to. It just doesn’t. It can’t. And, unlike the last few milestones that have happened over the past fifteen years – buying a house, getting married, having children – this next phase of building a new career only belongs to me.

He is still very much with me. But he’s not bringing me there. If anything, I kind of have to leave him behind a little bit to get myself there. And what a strange feeling that is. To covet and yearn for independence the way I once coveted and yearned for his constant, undivided companionship.


I feel guilty. And then I fight the guilt by noticing all the little hurts and sadnesses and disconnections between us. Even in our glory days, it was never as perfect as I wanted to believe. There were lots of times when I felt lonely and unheard and extraneous and not the least bit adored. There were lots of times when I felt like I was the biggest pain in his ass. I still feel that way. I simply don’t mind it as much as I used to.

This whole business of falling in love and sweeping each other off our feet and spiriting ourselves away to the Emerald City at the edge of the ocean? It was a phase. A long, beautiful, happiest-years-of-our-lives-together phase. It wasn’t linear. And it wasn’t the end. Gradually, over the years, we resurfaced and found all the old bits and pieces of our previous lives and selves. Everything circled back, but fell into place a little differently. And we are, once more, fundamentally ourselves. Two independent individuals who still love and support each other as husband and wife, but who are no longer tangled up in our own perceived mythology.

And what happens now? I guess we’ll figure that out as we go. Just like we always have.   

Saturday, October 19, 2013

Belligerent


He’s new. But not so new that I felt I couldn’t joke with him about it. We who toil in the fields of special education share a certain carefree gallows humor, don’t we? After a while all those cute little bites and kicks and verbal assaults become so absurd that it’s a little bit funny. And I know he’s seen worse.

So I said “Thanks for putting up with my son’s verbal abuse yesterday,” with a friendly smirk. The Boy’s case manager and her other aide would have laughed and then we’d have had a serious pro-to-pro discussion about it. But this guy? Not so much. I could see the hurt in his eyes and feel the cold edge in his voice as he told me exactly how awful it had been. “He was belligerent,” he said.

The Boy had been having an excellent 4th grade year up until that point. So excellent, in fact, that he’s decided his IEP is bullshit and has taken it upon himself to exit the autism/behavior program.

I do not give permission for this. His teachers, his team, and the principal have been extraordinarily flexible about it, though. The Boy adamantly refuses to be pulled out for his social skills minutes, so his 4th grade teacher is simply teaching the social skills curriculum to the whole class. When there’s a problem (which are much fewer and farther between than in previous years), our kick-ass principal skillfully intervenes instead of the aides. And when there is a need for academic support? Well, that’s all me, baby. They just send the work home and it’s Ma Floor Pie’s House of Free Tutoring.

It’s been working beautifully…sort of. We all know it’s not sustainable. So this past week, when The Boy’s class had a chance to break a volleyball record in PE class and The Boy got so excited that he went all Steinbrenner on some of his terrified classmates and then hid in an equipment closet…the principal had the New Guy take over for her so that she could get back to the business of running the school.

Belligerent.

I like New Guy. I feel terrible that my son’s angry words and attitude shook him up like that. I had New Guy’s job last year, and I remember how bad it feels when a kid you thought you were “in” with suddenly turns on you with all the force of his baggage. Even now, in my new job supporting a literacy classroom, it still happens sometimes. It’s a terrible feeling. I absolutely understand.

So when I respond to him, I do it earnestly, with kindness in my voice and what I hope is empathy in my facial expression. Let me explain to you, New Guy, why it is that my son feels “belligerent” about being tethered to an autism/behavior program.

Kids who end up at this program at our school? They are most likely kids who’ve had a spectacular failure at their first school. At age 5 or 6 or even younger, they were labeled the “bad” kid, the “problem” kid. And everybody believed it. Even the kid himself. Especially the kid himself.

Most teachers don’t know what the heck to do with a student like that, and some teachers believe they shouldn’t have to know. Some parents believe their child shouldn’t have to share a classroom with a child like that, and they’re not afraid to fight for that perceived right. Some principals believe that if the students aren’t able to stuff every last autistic tendency in a desk drawer and act like their typical classmates, they don’t belong in their school at all.

That’s pretty much where we were the first time The Boy and I had our first “You have Aspergers” conversation. He was 6 and it was the night before his first IEP meeting. He’d been having such a relentlessly horrible year, and the signs were palpable in both of us. He’d broken out in hives and developed all kinds of tics. I was losing my hair and developing weird phobias. The whole world seemed to be imposing a brutal “truth” on us, that we were unfit and unwelcome, that we were simply wrong and bad and had to shape up fast or suffer the consequences.

In the end, I chose to move him to a different school. And even though it worked out very well for us, nobody’s going to say “Oh, hooray, I get to move to a different school because I’m so very, very different from the other children!” It feels a bit more like a failure. And every time you see that autism/behavior team, it’s a reminder of your own inability to outrun your own “badness.”

“You need to understand that he’s not belligerent against you,” I explained patiently. “He’s belligerent against the program, and his diagnosis, and all that it represents.”

New Guy gets it. He doesn’t like it, but he gets it. It’s a hard job, and I know he’s doing his best.

And I realize that I have a job to do, too.

The Boy and his sister are waiting for me in my classroom. I set up Little Grrl with the American Girl web site and take The Boy to the rug for Phase II of the “You have Aspergers” conversation.

“I’ve given it a lot of serious thought,” I tell him. And it’s true. I have. “But I have decided that you are not going to exit the program. I have decided that you still need it.”

“So you’re saying the IA’s are going to keep bugging me?” He tears up. “Is this because of what happened in PE?” he asks. “Because that was a HUGE MISUNDERSTANDING! And that’s all that it was!”

“No, honey,” I say. And I gather him into my lap like an adolescent baby kangaroo. “It’s because…you still need this program. It’s not there to punish you, it’s there to help you. It’s not your fault. You’ve made so much progress. You’ve come so far. But you will always have Aspergers. It looks different at 9 than it did at 6. But it’s still there. It grows with you.”

“I know,” he says. And he tears up again. “I just wish I could be normal.”

“There’s no such thing as normal,” I say. And we talk about his cousins and friends who have food allergies, dyslexia, ADHD.

“That’s not the same thing as a DISIBILITY!” he cries.  

“Actually, it is,” I explain. “Your cousin who’s allergic to peanuts has a disability with her immune system. Aspergers is a disability with the…I don’t know…the limbic system, I guess.” (I have no idea how accurate either of these statements is, but he buys it.)

“But ADHD is no big deal,” he goes on. “That just means they have more energy, and they’re happy about that!”

“No, honey, they’re not always happy about it,” I say. “I know plenty of kids who wish they didn’t have ADHD.”

“Really?” He’s genuinely surprised.

“YES, really. It’s physically painful for them to just sit in a chair. They want to listen to the teacher but their disability just doesn’t let them. They hate it.” He thinks about that for a minute. “And your cousin definitely wishes she wasn’t allergic to peanuts.”

“That’s true.” And then he says it again. “I just wish I was normal.”

“You wish you didn’t have Aspergers,” I correct him. “And that’s not the same thing as ‘normal.’ The word you’re thinking of is ‘neurotypical’.”

He likes that. The Boy may hate doing vocabulary worksheets, but he loves to learn new vocabulary words.

I grab a few books from our classroom office and flip to the pages with medical illustrations of our brains. The Boy is fascinated. And a little annoyed with me for focusing only on the amygdala and prefrontal cortex when there are so many other parts of the brain.

Then I read to him:

In an autistic brain, messages don’t get sent from one section of the brain to another with the same frequency and efficiency as they do in a neurotypical brain. The ‘parts’ often work well, but they don’t ‘talk’ with each other…

The brain of a person with ASD appears to send far fewer of these coordinating neural messages. The result may be compared to a group of people crowded into a room, all working intently on the same project but never letting anyone know what they are doing. – I Hate to Write, by Cheryl Boucher and Katy Oehler  

He gets it. He doesn’t like it, but he gets it.

I can tell he’s about done with this intense conversation, too. So I wrap it up with my usual talk about being respectful to the other adults at school. And I tell him that New Guy said he was belligerent. The Boy laughs.

“Do you know what ‘belligerent’ means?” I ask.

“It sounds like a kind of ligger-elephant!”

“It does, doesn’t it?” And I teach him his second new vocab word of the day. “Belligerent actually means ‘war-like’.”

“Hmm,” he says, liking the sound of that.

“Seriously, honey, no being a war-like elephant with the teachers! I have to work with these people, you know.”

He knows. He tries. He’ll try again. And fail again. And try again. And so it goes.

I turn him loose and start getting the classroom ready for another day.

Monday, September 2, 2013

Tangled


Jason died in June. I’d been waiting for school to end so I could give him my full attention, as I knew things were getting more serious. When school is over, I told myself, I’ll send him the best care package ever. With a beautiful letter and photocopies of all the old Planet X cartoons and old photos and lots of good stuff. But then it became clear that he wouldn’t hang on even until then. I poured my heart out in writing and asked our friends back in New York to read it to him.

On the first day of summer vacation, it started raining again. Mr. Black left for a business trip. The kids were watching Adventure Time. I checked my e-mail. And I learned that our Jason had died that morning, peacefully and in accordance with his wishes, surrounded by loved ones.

And so it goes.

The summer rain was relentless and cold. I laid around in bed and went digging through my old notebooks looking for him – notes he’d written to me in class, hilarious quotes of his I may have jotted down. I kind of OD’d on it…all those memories, tangled up like necklaces in a drawer. It wasn’t long before I was missing and yearning for everything. Those people, that time, that place…and the “me” that loved them all so much and then, in bitterness and sheer embarrassment, pushed them all away.

I’d been living in Seattle for about a year when Jason had called me out of the blue. He was HERE! In SEATTLE! RIGHT NOW! When did I want to get together?

All I felt was annoyed. They always did stuff like this, those long lost friends of mine. Long periods of silence, unreturned calls, then just drop in with no plans or consideration for the fact that maybe I might be doing something other than hoping they’d call. So I said no, sorry. As it was, I was heading out on a date with Mr. Black. And I wanted so much to finally, finally be too cool to care that they were too cool to care.

As if it was somehow self-respecting to push away a friend like that. As if I could teach any of them anything or repair any old wounds with that move. As if it were actually possible to “move on,” snap your fingers and just not care anymore.

Losing Jason made me realize that I do care. About all of it. All of them. And apparently an awesome life 20 years later isn’t enough to cancel out these feelings entirely. I care because I care. They were some of my best friends. We thought we understood each other so well. We made each other laugh endlessly. We lit each other up. You can’t just forget that, no matter what happens.

But caring doesn’t necessarily restore anything. It’s not like the old rom-coms where all it takes is a well-spoken “I love you” and the band’s back together again and some dude’s running through an airport to win you back. When you care, that’s about you. Not them.

So you care. So, great. So, sit with it.

A week went by. The rain stopped. I got up.

I had tests to study for. I had kids to take to swimming lessons. I had new kittens to find. There would simply have to be new kittens. (My dear, sweet little Mia died back in March after a long battle with kidney disease.)

The grieving wasn’t over. But it wasn’t solid, either. There was nothing to say, no closure to impose; just feelings to feel. And those feelings changed from one moment to the next.

I absolutely love what my life has become. But I can no longer see it as this linear path with college in the distant past and my grown-up Seattle life as the only thing in front of me. All my old “lives” mingle and flow together, all for one and one for all. And everyone is still very much with me. They always have been. And nothing is truly over.

I went to our old college town for the memorial service and there it all was: The campus with its low stone wall where we’d sit and give the peace sign to passing motorists. The old A&P, which is now a Whole Foods. That cute boy who was my first college crush, now a middle-aged parent like myself, sitting with me on the patio sharing blueberries and talking about those first insane weeks of school with such simple, sober perspective.

And that fancy hotel where some of us worked and where visiting parents would take us out for lovely brunches…well, now we’re leaving our rooms and taking the elevator down to the main floor to honor and celebrate the life of our dear friend Jason. Here we all are. Older, wiser, and not all tangled up in each other’s drama anymore, but so very us, forever and always.

We told his stories. Made speeches and read poetry. Played his music. (There was that voice again. His voice.) And in honoring and celebrating Jason’s memory, we honored and celebrated our own memories, too. No more dismissing it as meaningless adolescent drama / stupidity / naivety / grandiosity / whatever. We were here. This mattered. Attention: paid.

And then…

Back to Seattle. Back to school, where there is a new job with the same wonderful teacher I worked for last year, and a classroom to get ready for our new students. Back home, to my children and husband and new kittens. Back home to finish out a beautiful summer. And to start again, with all the good and the bad and the old and the new inextricably, lovingly, hopelessly tangled.
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