Sunday, January 29, 2012
When The Boy first started kindergarten, we got into one of the nicest public schools in the city through Seattle’s now-defunct school choice lottery. I was so excited, because this was an alternative school that touted its commitment to social justice and empathy building. This was in our pre-diagnosis days, back when I still harbored a secret hope that The Boy would somehow stop being so volatile…but worried like crazy that he wouldn’t. Getting into a school like that gave me great hope. “He’ll be safe here,” I thought.
Two years later, we left. I tell people it was because our neighborhood school offers a service model that can better meet his special needs, as well as an advanced learning program to meet his academic needs. I tell people how wonderful it is to walk to school every morning instead of driving across town four times a day. And all of that is true.
But the deeper, more painful truth is this: There was a deal breaker, a last straw that drove me to finally pull him out of the school I’d loved, the school I’d been so happy to get into. He was being bullied. And the school – this social justice/empathy-building school – believed that it was his own fault.
It’s funny how reluctant I’ve been to call it “bullying.” Just like other, more serious forms of abuse, the situation was never quite black-and-white enough to feel entitled to that label. These were boys he’d been friends with, boys he probably would still consider his friends. He’d really wanted a playdate with this new kid Dudley (fake name), but Dudley’s dad was extremely uncomfortable with that. He was worried about Dudley’s safety. He wanted to see some references first – references from other parents of kids who’d been to our house without any major incidents.
I should have told the guy to go jump in a lake, but The Boy kept asking when Dudley was coming over. What was I to say? We’d talked to him about his Aspergers by then, but I simply wasn’t ready to talk about the fear and prejudice that sometimes comes along with it. Instead, we invited Dudley to his birthday party. And it actually went really well.
But the Monday after that birthday party (The Boy’s actual birthday, incidentally), I got a call from the principal that The Boy had been in a fight. Apparently, Dudley told another kid to hit The Boy, and The Boy fought back. Both were sent to the principal’s office. Not Dudley, though.
Every day that week, there were calls from the principal with some Dudley-related incident. Dudley’s best friend Millhouse (another fake name, but an apt one) was involved now, too. They weren’t in The Boy’s class, luckily, but all three of them were in the same reading group that met in the library every morning. And that’s where it always happened.
On the walk to the library, they’d get out of line to be right behind him. They’d whisper and laugh and refuse to tell him what they were saying. He’d try to talk to them and they’d hold their ears, pretending they couldn’t hear. They’d wait in the bathroom and jump out at him as he was walking by. They’d push him when the teacher wasn’t looking. Eventually, he’d melt down, lash out, and the reading teacher would send him to the principal’s office. Dudley and Millhouse were having a ball.
We had an IEP at that point, but it wasn’t enough. There were no teacher’s aides in the building, and the special ed teacher was spread incredibly thin. The reading teacher was this softspoken older guy who firmly believed that The Boy had a discipline problem. He’d been to every team meeting and knew about the Aspergers diagnosis, but all he wanted to talk about were “consequences.” He’d send notes home with The Boy, telling me about the latest meltdown and lamenting how hard this is for the other students. You know, the normal ones. There’s that empathy building.
“If that is considered normal behavior at this school,” I said, “then I think it’s time for us to start looking for a new school.”
The principal was only too happy to get the ball rolling on that. I’d always assumed she was a hands-off kind of person, because she’d been so passive and silent at all the team meetings. But now she was springing into her proactive best, being extremely helpful in getting us the hell out of her social justice school. (At least this was better than the previous principal, who’d actively tried to discourage a friend of mine from sending her Down’s syndrome daughter to the school in the first place.)
We agreed to let The Boy finish out the school year, but I wanted him out of that reading group post haste. Again, the school was happy to comply. The special ed teacher agreed to teach him one-on-one in the resource room. He loved it. His behavior improved dramatically.
Everyone at the school, even those I would consider our advocates, made it out like The Boy had such an “extreme” case of Aspergers that he belonged in a more intensive special ed program. I know now that is simply not true. They told me the sort of teasing he had to endure was “normal” and he must learn to handle it. I know now that not all schools see it that way.
Last fall, he was getting teased by some girls at his new school. His teacher and the principal both took it very seriously. They had a class meeting about it. At pick-up time, the teacher took me aside and thanked me for reporting it. He was glad they had a chance to address it before it got out of control. I haven’t seen those girls tease him since. I’ve even seen them playing four square together.
What this guy doesn’t realize is that it’s already happening. There are already children being told “No. You can’t go” to the fancier, more popular public schools in our city. Last year, in response to strong parent advocacy, the school district commandeered another nearby school and changed it to a foreign language immersion school. When special ed parents complained that this wouldn’t work for their children, they were callously told to simply transfer to our school.
And now that these unhappy families who wanted the international school have been reassigned to our school too…you can tell where this is going, right? There’s talk of changing our school to foreign language immersion as well. “Clearly the parents want it,” the school board says.
Well kiss my grits. Just take over our “too urban” school and force us out because the important people want it. They don’t seem to have given a thought to what they’d be replacing. Never even crossed their minds. Or perhaps they assume we’ll greet them as liberators.
I’ll tell you what parents really want. How about, before we colonize any more Very Special Schools, we get all the special ed students in Seattle the teacher’s aides and speech therapists and OT services that they need? How about instead of telling them to suck it up and be bullied and stop being so autistic about it, we give teachers the tools to help them? How about instead of saying “Maybe you and your autism would be more comfortable over there at that less popular school…oh, until we decide WE want it for OUR purposes,” we could focus on serving all kids at all schools.
Yes, a lot of parents want these fancy schools. But we’re here too. And sadly, a lot of us aren’t speaking up. Some fear retaliation from the school district or from their queen bee neighbors. Some simply believe, on some subconscious level, that as special ed families we deserve to be treated as “less than.” Some are just too tired and overworked to have the luxury of speaking out. But make no mistake: we are here. And our kids’ needs matter too.
Sunday, January 22, 2012
“No, it was easy. I’ve had worse times taking him grocery shopping,” is what I’d tell people to ease their surprise and concern. And then they’d relax and nod, understanding. Taking an 11-month-old baby who’s just discovered walking is an astounding feat anywhere, really. Why not a three-day train trip to Paris in the middle of winter?
Why not, indeed. We’d been visiting my old grad school friend and her family near Portsmouth, England. How could we travel all that way from Seattle and not go to Paris?
On the train to London, we sat in an aisle seat next to a woman preparing a resume, and I tried my darnedest to keep The Boy contained in my lap as he opened and closed the tray table with joyous abandon. He was desperate to get his hands on our seatmate’s sweet, sweet pen, and we locked ourselves in stifled combat as he reached and I restrained. This went on for pretty much the entire train ride. I was thankful for the group of raucous football fans on board, making us look downright prim by comparison.
At Waterloo station, they took one look at the baby sleeping peacefully in my arms and bumped us to the front of the line, I suppose because the risk of him waking up and wailing was simply too great to leave to chance. While we waited for the Eurostar train, I let him toddle wild in his little turtle Robeez all over the station. On the train, a French girl amused him with a rousing game of peek-a-boo.
And how amazing and sublime, seeing France for the first time from a train window, snowy fields punctuated with trees in perfect willowy lines. Mr. Black’s face lit up like Christmas morning as we rolled into Paris, remembering his last visit. We walked through the dusky drizzle to our hotel. It seemed as if the whole city were made of pastries.
I don’t speak a word French. Mr. Black taught me how to say “Je ne parle pas francais,” and I could barely even manage that. But it was a strange child-like luxury of sorts, letting the others do the talking; basking in the dreamy isolation of only being able to look, smile, and drift.
The next day was sunny and so cold and absolute perfection. I bundled The Boy into his snow suit and Björn’d him all over Montmartre, where he had his very first carousel ride ever. Later that afternoon we saw the Arc de Triomphe and wandered in and out of shops on the Champs Élysées, where The Boy laid waste to Virgin Mega Store’s punk section. We wisely decided to skip the Louvre, letting him toddle around in a nearby sandbox instead before heading to the Eiffel Tower.
He took his naps on the go – every Metro ride was like a magic snooze machine for him. At dinner in a small Latin Quarter restaurant, there were no high chairs. But a friendly waiter set a bread basket right in front of The Boy, who spent the rest of the meal happily gnawing.
“Ça va?” the waiter asked The Boy, grinning. “Ça va?”
“Oui, ҫa va,” Mr. Black answered for him in a squeaky voice. The Boy grinned right back.
The next day was less adventurous, sleeping late and devouring coffee and pastries in the hotel room. We spent the afternoon in a fancy department store, where my friend and I shopped while Mr. Black hung out with The Boy in the play cafe. Before we knew it, it was time to head back to the train station.
And that was it. My one and only trip to Paris.
A few weeks later, I was back in Seattle getting ready for The Boy’s first birthday party. He’d mastered walking and would soon move on to running, climbing, and carrying huge sticks everywhere he went. As the months went by, I found myself increasingly grateful that we’d taken that trip when we did, because this kid could no longer be contained. He was fierce and wild and free. No Baby Björn could hold him.
Even now, at a sober seven-and-a-half, it’s hard to imagine hauling him and the rest of this crew back to Europe. Legoland and the Oregon Coast were challenging enough. Between The Boy’s Aspergian challenges, Mr. Black’s recent Crohn’s diagnosis, Little Girl’s tearful refusal to use any bathroom but her own or eat anything but bread when we travel, a geriatric cat with kidney disease whom I’m very reluctant to leave behind, and my own recent bouts of raging anxiety…well, it looks like we’re just going to be homebodies for a while.
But, you know…we’ll always have Paris.
Thursday, January 12, 2012
I’m shivering on the concrete steps, huddling in the last winter afternoon sunbeams. Halfway across the school playground is The Boy, playing an impromptu game of soccer with a dozen other boys and girls from his class. They organize themselves into teams and positions. They kick and run, argue and resolve. There are parents all around, but we’re on the sidelines – chatting, reading, or just trying to stay warm. The kids are a little society unto themselves, Peanuts-style.
I’m on the edge of my seat, of course, knowing The Boy could lose it at any moment. The other team scores and scores again. He breaks a rule he didn’t understand and a girl loudly corrects him. A little sister runs amok through the game, throwing everything off course. I brace myself. But he stays calm and keeps playing. Later, they organize themselves into a kickball game.
An ordinary scene, but it feels like a small miracle. These kids accept him. And he accepts them. He even follows their lead, acquiesces to their rules, high-fives a teammate who scores. He plays until most of the other kids have gone home, and his good mood lasts for the rest of the day. When I think about it, I realize that his meltdowns are getting fewer and farther between. And when they do happen, they’re much more easily managed.
I know we’re just going through a good patch right now and I shouldn’t get too cocky. There’s no “cure” for Aspergers, after all. One doesn’t outgrow it. I know the moods and meltdowns are lurking not very far beneath the surface. But I want to stop and give this good phase the same attention I’ve given to the rough spots. I want to go ahead and be proud of him, and proud of myself. And I want to recognize that while I did a lot (a lot!) to get us to this point…I didn’t do this myself. Not even close. Meet the village:
Parent Advocate Pioneers
Other special ed families’ struggles make ours look like a trip to Hawaii. There’s a parent at our school who’s been a particularly fierce advocate in the face of some pretty extreme adversity. But she managed to convince them that her son needs and deserves to participate in an advanced learning class with special ed support.
By the time we were reassigned to this school, I was too exhausted to fight for advanced learning placement. I was ready to back down and not push for it if they said no. But because this parent paved the way, all I had to do was ask the principal about it once and she said yes. And what an incredibly positive difference it’s made for The Boy to be in a class that truly challenges him. He’s reading classic children’s literature instead of those dry committee-generated readers. He’s learning the multiplication tables and long division. And he’s in a classroom full of kids who are psyched about math and science. (And Harry Potter. Holy moley do those kids love Harry Potter.)
I wouldn’t have fought for any of this. But another parent did, so we get to reap the benefits. I’ll remember that the next time I’m tempted to back down.
Of course, the credit for this particular class goes to The Boy’s excellent classroom teacher. He’s the kind of teacher who calls after the kids as they’re heading for the buses “Don’t forget to watch the lunar eclipse tonight!” He genuinely likes them, and they like him right back. They have this incredible energy together.
He’s been very flexible and understanding with The Boy, and he’s been welcoming and open to feedback from me. But the really wonderful thing this teacher has done – the thing I absolutely couldn’t have done myself – is hold very high expectations. Not in a mean, Tiger Mom-ish way. Just simple and firm. “He can do this.” And most of the time he can. He’s so proud of himself. And I’m learning how to gently, kindly, set the bar a little higher for The Boy than I used to.
Special Ed Support
Words fail. These people make it possible at all. The teacher’s aide who helped The Boy through those first terrifying weeks at his new school. The special ed teacher who talks him through his meltdowns and bouts of crippling perfectionism; who gives him unbridled encouragement when he tries something new; who called me at home on the first day of school to tell me he’s having a great day. The teacher’s aide who researches topics he’s interested in so they can have conversations about it. The resource room teacher at our old school who was The Boy’s sole advocate, who wrote him a great IEP and helped us get him to a school that was a better fit. Their depth and breadth of knowledge, their empathy, their infinite patience. Where would we be without them?
Viewers Like You
I owe my relative sanity and overall well-being to every friend, family member, and reader who’s ever listened to me talk or who’s read and shared my writing about all this. So many of you have given me such generous room to vent, ponder, cry, head down a completely wrong path and backtrack to square one, worry, and ponder some more. You’ve given advice, offered resources, validated my feelings, challenged my perspective, helped me feel strong and capable. Thank you.
School…When it Works
We had a “Getting Ready for Kindergarten” parent meeting at Little Girl’s preschool earlier this week. Our parent educator asked those of us with children in elementary school to talk a little about our experiences. I don’t think any of us intended to scare the pants off the first-timers. We all love our schools, and the kids are having a great year. But it took some of us a while to get here.
We had to stand up to teachers and systems that misunderstood or undervalued our children. We had to improvise solutions. We had to teach our children even stronger coping skills, and deal with our own disappointment. It wasn’t easy. But I believe that every single one of us came out of it stronger and smarter from the experience. You don’t always get it right the first time. But human beings are incredibly resilient.
Yesterday afternoon, we gathered in the elementary school library for cupcakes and popcorn to honor the teachers who are doing special ed inclusion in their classrooms this year. The special ed teacher had prepared one of those “You Are The Wind Beneath My Wings” Powerpoint slide shows, featuring heartwarming photos of the students all working, learning, and being part of the group under the gentle guidance of these teachers.
My favorite part, by far, was watching the audience’s reactions. Some of the teachers looked close to tears. Some had the biggest smiles on their faces. The Boy was delighted to see a slide of himself, hard at work writing a story at his desk. At the end of the slide show, the principal did a mock collapse, showing how incredibly touched and proud she felt.
School isn’t perfect. Life isn’t perfect. I know there are challenging times ahead, maybe even later today. But at this moment, I’m feeling so happy for simple moments like that after-school soccer game, and so grateful to everyone who’s helped us get here.
Sunday, January 1, 2012
I poured my carrot juice a little too fast at breakfast, and the flash of orange triggered a split second of memory and panic. I know this kind of thing is supposed to make you seize the day and hold your babies tight in breathless gratitude. But this morning, all I wanted to say was “Dear kids: Mommy almost burned her face off last night. Please cut the bullshit.”
I didn’t say it, of course. There were pink (NOT ORANGE!) vitamins and half a bagel with cream cheese (NOT TOASTED!) for Little Girl, and a frozen waffle (toasted! no, cold! no, toasted! no, cold!) for The Boy. Making the eggs was the biggest challenge, of course, returning to the scene of last night’s New Year’s Eve grease fire. And so we meet again, Mr. Stove.
I’d been trying to make popcorn for the kids’ movie night while talking on the phone with my mom. When I saw smoke pouring out of the pot, I stupidly took the lid off and then, even more stupidly, tried to extinguish the flames with a big cup of water (that also happened to have a sponge in it), making the flames flare up dramatically. When I started to move the pot off the hot burner, the flames shot nearly two feet in the air, in the general direction of my face.
Mr. Black came in and put the fire out as quickly as it began. The Boy was in the living room, high-pitched and panicking until we reassured him that the fire was out. But there would be no popcorn tonight. That was the last straw for Little Girl, who burst into tears and kept on crying.
What the hell just happened here? I saw the sad old blackened pot, abandoned in the backyard. My breath felt smoky and my face hurt. Mr. Black was standing on a chair, scrubbing smoke stains off the kitchen cabinets. I noticed a huge burn on my wrist, and my right eyelid felt like it was burning, too. Wait a minute, I thought. Didn’t flames just shoot at my face? Perhaps I should seek medical attention.
No waiting at the ER. You want speedy service, just have a seat at the check-in window and tell them you’ve been in a kitchen fire. There was a young, fresh-faced doctor, followed by his supervisor – an older gentleman, kind and jolly, dressed in a tux to make the most of having to work on New Year’s Eve.
“Was it smoke?” he asked, examining the burns on my face.
“Flames,” I said, and he looked at me with worry and surprise. “I was lucky,” I added. He nodded solemnly.
I had to wait for an eye exam, and wait some more while they consulted with the burn center at another hospital. And the longer I waited, the more the reality of the situation set in. This could have been a lot worse. Really, it was miraculous that it wasn’t a lot worse.
I felt a perfunctory impulse – almost an obligation, really – to thank God, or G-d, or the Universe, or Jesus, or Santa, or the spirits of my ancestors. Somebody. But the gratitude felt hollow. To believe that some divine force of good intervened to save me from my own stupidity, from an accident that I caused, is to believe that I am somehow more worthy of being saved than the next unfortunate accident-prone mother of two. And how can I believe that? What does that say about the person who isn’t so lucky? What sort of false hope does that provide? How will you comfort yourself when that benevolent intervention doesn’t happen?
The chilling fact of the matter is that this simply happened. I made a mistake. I started a fire. The flames burned just high enough to burn my face a little with their heat, and that was all. It could have had a different outcome. But it simply didn’t.
And so, I join the ranks of all the other New Year’s Eve survivors of bad choices – the DIY fireworks injuries, the drunken tumbles down the stairs, all manner of accidents that shouldn’t have been. And I go back to my life very much as before, hair and eyesight intact, living to kvetch and ponder another day. Lucky.
And yet…There’s a part of me that still very much wants to believe that I am a loved and treasured child of a universe that knows I’m here and wants me to stay. Whether it’s objectively true or not (and really, no one can know for sure), it’s a belief that can make all the difference in how happy you are to get up every morning and face the day’s fears and frustrations. It’s a belief that got me through some of the most challenging times of my life. It’s a belief that just might make it possible for me to sleep better tonight, and maybe cook again without anxiety. It doesn’t hold up to scrutiny or logic. But I think, for the time being, I just might hold it in the back of my mind anyway.
That, and some basic fire safety know-how. Best wishes for a lucky 2012!