Toby Beth Jarman's Open Salon Blog

What Does "Autism Awareness" Look Like?

Wed, 11 Apr 2012 15:04:42 -0400

April is Autism Awareness Month and everybody’s got something to say, so I guess I’ll chime in too. 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, one more thing: 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 clue. I try to second-guess and get it wrong (way wrong). I just plain forget sometimes that my son 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 my son 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 he 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 my son. 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 my son blows out the candles on someone else’s cake because he can’t stand the “Happy Birthday” song, even I think he’s being a jerk. 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 goodness' 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.

Moms Need Birth Control Too

Fri, 17 Feb 2012 00:02:39 -0500

I didn’t want to write about this today. I mean, don’t get me wrong, I love to delve into a good lady-parts story as much as the next gal. I just didn’t think I’d need to do it in response to this particular issue.

Really…birth control. How can birth control still be controversial in 2012? And yet, it seems like I can’t look at the news without reading about it. I thought it peaked during the controversy over whether Catholic employers should have to cover birth control in their employees’ health plans. I kept sputtering half-articulate outrage at the computer like a freshman who’s 3 weeks into her first women’s studies course while my husband rolled his eyes and reminded me that a return to the culture wars simply means the economy must be improving.

I was sure we’d heard the last of it when President Obama worked out a compromise. Catholic employers who object to providing birth control won’t have to. Health insurance companies will have to provide it instead (which I'd imagine would be fine with them, since birth control is significantly less expensive than pregnancies). It seemed like the dust had settled and it was time to move on to greener culture war pastures (like whether marriage equality will force us all to marry our bacon cheeseburgers. Really.)

But no, it's not over yet. Congress is considering legislation that would allow any employer, religious or otherwise, to deny birth control coverage in their health plans. Republican Chairman Darrell Issa refused to allow a woman with relevant medical information testify (with an otherwise all-male panel) at a hearing on contraception. And even before his backer Foster Friess's charming aspirin joke, Rick Santorum had this to say:

Many in the Christian faith have said, ‘Well, that's OK, I mean y'know, contraception is OK.’ It's not OK. It’s a license to do things in the sexual realm that is counter to how things are supposed to be. They're supposed to be within marriage.

Sigh. Okay, here’s the thing, Republicans. And I’m speaking from “within marriage” now, not pregnant at the moment but plenty barefoot; just a baby-loving, home-owning, field-trip-chaperoning, cookie-baking, husband-adoring, Target-shopping stay-at-home mom. So listen up:

Women like me need birth control too. Without birth control, I wouldn’t even be a mom.

When I was 24, my ovaries were covered with endometrial cysts. The biggest one was the size of a baseball, practically swallowing the ovary whole. It could have made me infertile. Even after surgery and hormone therapy, those cysts can always grow back and wreak all kinds of havoc. But my doctor knew a simple way to manage the endometriosis – birth control pills. Tell us all about it, WebMD:

Birth control pills are the first-choice treatment for controlling endometriosis growth and pain. This is because birth control hormones are the hormone therapy that is least likely to cause bad side effects. For this reason, they can be used for years, while other hormone therapies can only be used for several months to 2 years… Birth control pills can also be used to stop or further slow endometriosis growths after endometriosis surgery.

And that’s how I was able to heal up the lady parts and go on to spawn our little cuties. Birth control and family values. Huzzah!

But it doesn’t end there. It doesn’t even begin there, really. There were miscarriages, too. Early ones, thankfully, but devastating losses nonetheless. Before my son, I lost three pregnancies in an 8-month period.

And then, when he was only 10 months old, I had my first and only unplanned pregnancy. Damn near immaculate conception, really. We were amazed, a little freaked out, and so happy. The most encouraging thing of all was that, without even knowing I’d been pregnant, this pregnancy had lasted longer than any of those earlier ill-fated ones. I’d made it safely past the “danger zone” where I would typically miscarry. Dreamily, I started shopping for all my old favorite pregnancy foods and thinking up baby names.

One week later, there was spotting. A blood test confirmed that the pregnancy had stopped growing. An ultrasound showed nothing but an empty embryonic sac. I was instructed to go home and wait for the inevitable miscarriage. They warned me that it wouldn’t be like the other ones, which were only slightly worse than an extremely heavy period. This one was going to hurt. Call us if there’s a lot of blood, they said. They even gave me a few maxi pads to take home. Um…thanks.

Because nothing happens around here without a little gallows humor, miscarriage #4 came mere minutes after the Philadelphia Eagles lost the Superbowl. I’d been lying on the living room floor letting the baby play with my hair and feeling crappy in general while my husband watched the game. Suddenly, it was go time.

And it was awful. It hurt like labor, complete with contractions and dilation and pushing. With every wave of pain came a grisly expulsion of gnarly clumps of blood and tissue. We’d left the TV on, and the premiere of American Dad cavorted in the background. My husband held my hand and rubbed my back, which was incredibly comforting but also reminded me that the last time we did this, we ended up with a baby. Overall, I’d have to say Worst Superbowl Ever.

Somehow, going through all that only strengthened my resolve to have another baby. But when we were finally lucky enough to welcome our daughter to the family, there was no doubt in our minds. The baby factory was now CLOSED. I have had all the miscarriages I am ever going to have. I don’t ever, ever want to go through something like that again. Hello, IUD.

Look, there are obviously lots of reasons to be in favor of birth control beyond my little middle-class-married-mama story. But do I really need to list them? Is it really anybody’s business in the first place? Honestly, I might as well write about why people should have access to penicillin or Vitamin C or something. Isn’t it obvious? Birth control can make us healthier and safer. It helps us build our families. It puts us in control of our bodies and our lives. And, let’s face it, birth control prevents abortions.

Why do I feel like the minute I start making arguments like this one, we’ve already lost? Why is it up for debate at all? I hope my husband is right, that this is simply the latest song-and-dance number in the culture wars now that the economy is on the mend. Because a 42-year-old mother needing to defend her IUD is just a little too ridiculous.

A Very ACLU Christmas

Tue, 22 Nov 2011 21:11:20 -0500

There was a so-called “war on Christmas” long before Bill O'Reilly and friends went mainstream with it a few years ago. I should know. I worked in the ACLU’s Philadelphia office in the mid-1990’s, and it was my job to open the hate mail. Most of it arrived during the month of December in the form of Christmas cards. Nice picture of Mary and the Baby Jesus on the cover. Scrawled scathing message encouraging us to burn in hell or die painfully on the inside. Joy to the world, indeed.

It was all because of that pesky “separation of church and state” which, at least in those days, typically meant your courthouse couldn’t have a crèche on its front lawn. (Unless you went this route.) Our lawyers were much busier with other pursuits -- helping the woman who'd been evicted over her boyfriend's race or the man with Down syndrome who wasn't allowed to ride a merry-go-round at a local amusement park. Crèche-busting typically required a few phone calls in the middle of a hectic afternoon, then they’d move on. But that’s what gained us the most notoriety.

Our lawyers didn’t mind the hate mail. Some of them thrived on it, in fact. These were people who loved a good fight; being told to burn in hell just meant they were doing their job. I didn’t take it personally either. But it did make me think. I’d just be sitting there at my cluttered desk in my little hippie skirt making my little $20K a year and listening to my little mix tape, wondering what sort of Christian would think I deserved endless pain just for showing up and doing my little support staff job that day.

And what a job it was. Our office of ten people served all of Pennsylvania. There were two or three lawyers in Philly, another one in Pittsburgh. Phones rang all day long. Mail poured in. I did everything from photocopying to event planning to producing a newsletter. There were some exciting days, being in the midst of important cases and press conferences. There were downright degrading days, dealing with big egos and unkind words from our superstar freedom fighters. But there were plenty of slow, peaceful days, too.

That’s how it was right before Christmas Eve that year. My major projects were finished for the time being. No fires to put out. My mom was coming that night to take me out to dinner and give me a lift home for the holidays. I was clearing up some of the months-old clutter on my desk when I heard some bustling in the foyer area.

I saw Frank, our long-time senior citizen volunteer receptionist, sitting at his desk and speaking earnestly with a young man wrapped in a coat while two small children, a boy and a girl, squirmed in our uncomfortable waiting-room chairs. Each child was holding a gorgeous oversized mesh plastic “stocking” stuffed with toys, clearly yearning to open them but showing remarkable restraint.

Except for the children, it was a familiar scene. All sorts of folks dropped in on our office from time to time, seeking help. Frank would listen patiently to every word of their stories before he would purposefully explain, in his Jim-Ignatowski-meets-Grandpa-Simpson manner, that the ACLU does not handle such cases and refer them to an agency that did. Sometimes they’d get angry, but Frank took the verbal abuse stoically, patiently listening again before restating his position. And listening. And restating. Eventually they’d move on.

But this family was different. From what I was overhearing, this was clearly not a situation the ACLU could help with in an official capacity. But Frank didn’t give him the speech. He kept listening. He kept asking questions. The children got antsier and louder as the conversation continued. Some of us came into the waiting area and tried to keep them entertained with whatever random toys we had on our desks. Stress balls. A Marge Simpson doll. Finally, their dad gave them the go-ahead to open the stockings, and merry chaos broke out.

In the midst of all that, our Legal Director and chief crèche-buster came blustering out of his office on some unrelated matter. He asked Frank what was going on, and Frank discreetly explained. This family had nowhere to sleep tonight. They’d been staying with a friend of the dad, but they couldn’t go back there now. The friend molested the little girl. The lawyer’s tone shifted in a way I’d never heard before, from busy and important to sincere kindness and concern. He invited the young dad into his office.

Which left the babysitting to the rest of us. But no one seemed to mind. Children rarely made an appearance in our office, and they lightened the mood considerably. They pulled crayons and containers of Play Doh from their stockings, and we all got creative together. We made up games and let them run up and down the long hallway.

The meeting went on for most of an hour. Our Legal Director was on and off the phone, networking with his colleagues in social services, tracking down a place for this family to stay. Finally, he was able to line something up. We helped the children gather up their stockings, got them into their coats, and off they went into the Philadelphia winter dusk. I tried to swallow the lump in my throat as I picked the squished Play Doh bits from our waiting-room carpet. Sweet little girl. Who knew what was going to happen to her? It broke my heart just to think about it. But at least she had somewhere safe to go on Christmas Eve.

The “Very Special Christmas Episode” message here is probably pretty obvious, but it bears repeating: The ACLU may have caused the relocation of a few plaster Mary-and-Josephs that year. But an ACLU lawyer also found this real-life unfortunate family some room at the Inn. And with all due respect to Mr. Schulz, I’d like to suggest that that’s what Christmas is all about, Charlie Brown.

Dedicated to the memories of Stefan Presser, Larry Frankel, and Frank Kent.

A version of this post originally appeared on my Open Salon blog in 2009.

Storm of the Century Road Trip

Fri, 6 May 2011 21:05:31 -0400

First of all, in my defense, I was 23. In geek-girl years, that’s like 12 or 13. I was more or less happily single, in my final year of grad school, sharing a wacky apartment with a good friend in a sleepy university town in New York.

This was in the early 1990’s, long before the dawn of Facebook. If you wanted to get in touch with old friends, you had to call them. Or write them a letter. Or actually visit them, which involved unfolding actual paper maps and driving for hours while listening to your cassette mix tapes.

It wasn’t unusual to have platonic male friends from past lives sleeping on our living room floor on any given weekend. And, from time to time, it wasn’t terribly surprising if said platonic male friend ended up sleeping, well, not on our living room floor. Very rarely, if the planets aligned just right, that friend might make a few more visits. Next thing you know, you’ve got yourself a boyfriend. You didn’t plan it. You didn’t even particularly want it. But having romantic companionship is so much nicer than not. Why not give it a try?

I wasn’t unattracted to him. Ages ago, when we’d first met, I’d actually had a flaming crush on the guy. It broke my silly teenage heart when he wanted to be “just friends.” So why, having finally won him over, did I cringe when he put his arm around me walking down the street? Why did the charisma and endless stream of jokes that once impressed me now mostly just exhaust and annoy?

A sensible person would have cut their losses and set the guy free. Instead, I decided we needed to go on a road trip together. To Niagara Falls. The same weekend that weather forecasts were predicting the blizzard of the century.

Obviously, it was an idiotic plan from start to finish. Let me try to make sense of it: Ignoring the forecast of snow? We’d had a few “false alarm” weather reports that winter calling for pounds of snow that never actually fell. And it was March now, almost spring for Zod’s sake. I was certain – absolutely certain – that it wasn’t going to snow that weekend. As for the road trip itself? I don’t know. I just loved “the road” so much in those days. I guess I’d hoped the exhilaration I felt for road trips would somehow spill over into my feelings for him. Besides, I’d never been to Niagara Falls.

That first night we zoomed across the state of New York under a clear night sky, laughing and telling each other stories. It was working. I was happy and excited and truly enjoying his company. We were positively giddy when we finally rolled into town, driving down the deserted streets, looking for a hotel.

But the next day, things took a rapid turn for the worse. Still no snow, but the blizzard was imminent. At least that’s what everyone was saying at the hotel. Somehow, I stubbornly believed that snow was just an idle threat. He wanted to head back home before the blizzard hit. I wanted to at least see the waterfalls first. So we drove out to Goat Island and strolled into the bitterly cold morning.

Years later, I would tell this story to my incredulous husband. It wasn’t the fact that I’d dragged some poor boyfriend to Niagara Falls on the eve of the Storm of the Century that bothered him. It was the fact that we’d made it all the way to Goat Island and somehow – don’t ask me how – never actually saw the waterfalls.

We looked. Really, we did. At one point, we thought maybe we saw waterfalls off in the distance, but we were mistaken. All we could see was a nice little picnic park, the churning river, and an ice-white sky getting ready to dump ten tons of snow on us. We must have been looking on the totally wrong side of the island. Maybe if we hadn’t been so busy worrying and bickering over what to do, we might have tracked the damn waterfalls down.

Instead, we decided to drive home in the hopes of beating the snow. There were just a few stray snowflakes falling. I’d driven in worse. But it got heavier quickly. I’d never seen snow fall so fast, in fact. It was relentless. About an hour into the drive, it was blowing all across the road, barely a scrap of pavement in sight. Stubborn as hell, I pulled into a rest stop imagining we’d wait for the snow to stop and then drive home. But after many cups of coffee and futile staring out the window, the boyfriend convinced me to book a room at a nearby Days Inn – a short but incredibly harrowing drive.

Looking back on it now, with my recently-acquired fretful mother sensibilities, it feels even more harrowing. What if there hadn’t been a hotel nearby? What if we’d had an accident? What if I’d died in Middle of Freaking Nowhere, NY with a soon-to-be ex-boyfriend just because I’d been so driven, so stubbornly determined to escape boredom and restlessness at all costs? Stupid, stupid girl.

That Days Inn would be our home for the next two days as the Storm of the Century raged on. I tried to get some schoolwork done in between bouts of staring dejectedly at the Weather Channel. Eventually I gave up and switched to cartoons, a Mary Tyler Moore marathon, and getting my butt repeatedly kicked at Scrabble by the boyfriend. Any lingering delusions of happy couplehood had pretty much faded for both of us, but we nursed it along anyway. The sheer boredom of being stuck in that beige bedroom miles from anywhere was a bitter little aphrodisiac.

Bitter irony, really. With the right person, getting stuck in a hotel room for days on end could have been a fantasy-come-true. Instead, I found myself yearning for the drudgery of singlehood apartment life. I wished I was watching stupid TV with my roommate, or stomping through the snow to one of our town’s many eccentric old diners for coffee and a grilled corn muffin. Even when my roommate told me over the phone about her ordeal trying to borrow a snow shovel from the cranky neighbors, I yearned for home.

On day three, the sun returned and the New York State Thruway opened again. We drove home in relative silence. I don’t remember when or how the official breakup happened, or if we ever officially acknowledged it at all. All I remember is an awkward brunch in one of my favorite diners, slogging through the slush to my Shakespeare seminar, and never seeing the guy again.

I didn’t feel much guilt at the time…just glad to be out from under the weight of his disappointment and the aftermath of my own terrible, terrible decision-making. But I did take notice. I spent a lot of my dating career being the one to get hurt. But I did my share of hurting, too. I’m not sure which is worse. When your heart is broken, all you have to do is heal. But when you’ve hurt someone else – with selfishness and stubborn, misguided determination to turn winter into summer through sheer will – well, the path is a little less clear.

I never did make it back to Niagara Falls. Living in Seattle now, it seems pretty unlikely that I ever will. I still can’t believe we were right there and never saw it. Traveled all that way and then just left without getting what we came for, only to get stuck in the snow and face up to an uncomfortable truth: Sometimes it’s just better to be home alone.

Why All the Maternity Clothes?

Thu, 31 Mar 2011 12:03:15 -0400

Why do I still have maternity clothes in my closet? My oldest is almost seven, I’m in my forties, and the baby factory is most decidedly closed. Plus, it’s not like there’s a lot of room for those old clothes around here. Do I really need a “formal” black velveteen-and-satin smock? Or those colossal stripey tank tops? Or those jeans with the big stretchy panel around the waist?

No, of course I don’t. But for some reason these clothes are as precious to me as baby’s first six pairs of shoes. (Which I also still have.)

I know we’re supposed to hastily shed ourselves of our maternity clothes in shame because – the horror – we used to be fat. But I’ll confess: I loved my pregnant body. I probably loved it more than I loved my twentysomething single girl body, or even my teenage body. Shopping at Motherhood Maternity was more exciting than shopping at Nordstrom in those days. Seriously.

For one thing, pregnancy is the only time in a woman’s life when a big belly is considered an asset. I’d spent my entire clothes-shopping career trying to minimize that belly. But in pregnancy it was tight, round, ripe, and gorgeous – bare in prenatal yoga class, peeking from tank tops on the beach. Even under a plain old maternity T from Target, it was a good look for me.

But that’s not the only reason why I hang onto these clothes.

My path to motherhood was one big absurd obstacle course. Nearly two years of trying. Early miscarriages, one after the other, dragged our marriage and my sanity through the trenches. Month after month of inconsolable sadness, bouts of wildly looking around for an exit, feeling saturated with pain and disappointment that never seemed to get familiar or easier no matter how many times we’d been through it before.

And then, just like that, I got pregnant and stayed pregnant. Months passed before I truly believed a real baby would actually show up. Not knowing how long the pregnancy would last, I savored every wave of nausea, every spiral of exhaustion. I spent my sleepless nights trying to visualize the cloudy little being inside me that might or might not grow into my child. This was no pink-cloud pregnancy. It was some dark, primordial fog, always uncertain.

But during this time, I was also checking out pregnancy magazines and taking my first tentative steps into the baby-gear stores. That juxtaposition of miscarriage fears and pastel-colored baby bibs was incredible. It was as if, right in the middle of Black Swan, the Muppets pop out for a musical number. It was “We Three Kings” played back-to-back with “Feliz Navidad.”

But as the months went by and my pregnancy stayed healthy, it became clear that the baby really would be born. I really would be a mother. I was shopping for my baby just like any other expectant mom, and it felt like a small miracle.

That first time I dared to set foot in a maternity store and actually carried those clothes to the front, paid for them, and took them home…it felt downright revolutionary to me. Yes. I get to have a baby too. I get to participate in this crazy retail ritual too.

For me, pregnancy was more than just a fat, nauseous means to an end. And even though the clothes may be silly, they’re also a symbol of my crossing over from the dark, sad, uncertain world of miscarriages toward actual parenthood. It was a time of incredible optimism and gratitude. Maternity jeans are so much less dowdy when you never thought you’d have the opportunity to need them. Even that big ridiculous drawstring has a special place in my heart. I guess that’s worth the few feet of closet space they take up.