Tagged with " autism"

This is what democracy looks like

Normally, I’d be writing a Friday Night Lists posts today, but something so extraordinary happened yesterday that I feel compelled to write about that instead. It’s a series of events that has restored a tiny bit of my faith in responsive government, and will have an effect on literally tens of thousands of people who will never know I had a role in it.

A few months ago, I saw an email from TakeAction Minnesota calling for folks to tell their stories about the importance of MinnesotaCare, the low-cost state health insurance option that covers people with incomes between 75 to 250% of Federal Poverty Level, depending on family status. I wrote in with my own story about the failure of care for my fibromyalgia and subsequent suicidal depression that occurred when we first moved to Minnesota two years ago, and how well MinnesotaCare has kept me healthy since it kicked in that fall.

I got a call from one of the healthcare staffers at TakeAction this spring. In the time that had passed, we’d dealt with Connor’s own crisis, and MinnesotaCare was (and is) critical in the solutions that saved his life. They asked if I’d be willing to testify to these things as the government worked to figure out what to do with MinnesotaCare, once (hopefully) the Affordable Care Act kicks in in 2014. Some officials wanted to ensure that eligible communities would move into a Basic Health Plan that’s basically the same, while more conservative influences have been pushing hard to force participants to buy their own private plans on the Insurance Exchanges that will be set up under ACA. Of course, I said yes.

This Thursday, I attended a meeting of the Access government workgroup grappling with these issues. It’s a panel of officials from relevant government bureaus, the Minnesota Legislature, and agencies like Legal Aid and major labor and insurance groups. Here’s what I told them:

“My name is Jessica Banks. My husband, my two young sons, and I are currently enrolled in Minnesota Care. I have experienced life with and without this important program. I am here to tell you today that, without access to Minnesota Care, my health and my life spiraled out of control. I am also here to tell you that our Minnesota Care coverage saved my son’s life.

When we moved to Minnesota from Wisconsin two years ago, we needed to transition our coverage from Badger Care to Minnesota Care. We qualify for state coverage because we make $34,000 a year for a family of four, putting us below the 200% Federal Poverty Level. Neither of our jobs provides health care coverage, and we are unable to afford a private plan. Unfortunately, our transition required a four-month waiting period during which I became very ill.

I have lived with fibromyalgia for the past 13 years. With medication, I can keep it fairly stable. When we moved, I had enough medicine to get me through a few weeks. I had made an appointment with a doctor when I arrived. I planned on paying out of pocket for the visit. That doctor was unwilling to continue my established care and, without insurance, I couldn’t afford to make additional doctors’ visits. Buying the medication without insurance would have cost over $1000 a month. I tried to find low cost alternatives, but I wasn’t successful.

I tapered myself off my meds, trying to make them last as long as I could. It wasn’t enough; I ended up going off all the meds completely. My pain levels spiked. I was couch and bed bound. It was so bad that I couldn’t take care of my kids. As my pain levels rose, a deep depression set in. I ended up in the ER with severe depression and pain. In the hospital, the doctors regulated my drugs and found generic alternatives that I could afford. I received help for the depression, and I began to return to my normal life. Then, our Minnesota Care coverage kicked in and I was able to fully recover.

In February, my nine-year-old son Connor, who has Asperger’s Syndrome, went through a suicidal crisis. Autistics like him find rapid, unpredictable change overwhelming. His baseline of everyday highs and lows crashed and became erratic. Minor problems seemed insurmountable, and we had difficulty protecting him from his wild swings of emotion at home and at school. He hurt himself on several occasions, and he couldn’t see any way out of his sensory and emotional torture.

Our Minnesota Care plan completely covered his evaluation and a partial hospitalization program that quickly and effectively reversed his attempts to kill himself, and changed all of our lives for the better. Because of Minnesota Care, we were able to help him heal, and to recover as a family. He finished the school year back with his friends and teachers at Chelsea Heights. On this Tuesday, we celebrated his 10th birthday, a milestone I honestly doubted we would achieve at times this spring.

I am incredibly grateful for Minnesota Care. I shudder at the thought of what the outcome would have been if we didn’t have access to Connor’s treatment. I am here to ask you to ensure that Minnesota Care families continue to have access to affordable health coverage through an option very similar to Minnesota Care, called the Basic Health Plan. A comprehensive benefit package, including full mental health benefits and affordable prescriptions, is also important to my family’s continued wellbeing.

Without Minnesota Care, my health insurance premiums would increase by over 50 to 70 percent if we had to buy coverage on the Exchange, instead of having Minnesota Care. Without Minnesota Care, Minnesota families like mine, who are already vulnerable, would be exposed to unbearable stresses and burdens. My son and my family were saved by Minnesota Care–please don’t take it away.”

I’d practiced my comments several times, so I thought I had it cold, but when I described Connor’s difficulties, I got choked up. I recovered without messing up my mascara, but I could hear sniffles both in the audience and on the panel. When I told them about celebrating Connor’s birthday, I flipped up the picture frame I’d brought with me to the table and showed them this picture. The sniffles turned into tears.

I had to leave for work shortly after I testified, but the ladies from TakeAction who’d helped me figure out the specifics of my comments and supported me with their presence there that day were very complimentary. A few people thanked me for my courage, which surprised me. What I’d done hadn’t taken any particular courage on my part–I don’t have a filter, so I’ll tell anybody anything. (Exhibit A: This whole damn blog.)

That evening, I got an email from TakeAction, containing a forwarded message from the chairwoman of the committee for me and another woman who testified. She wrote this:

“And then when people spoke, they were eloquent and compelling.  They did a fabulous job.  Unfortunately, I was not able to thank any of them personally or tell them how great they did.  They left before the meeting finished.  As a result they may not have realized how important they were to today’s outcome.  In agreeing today that the benefit package for the138-200% population should be at least equal to the current MNCare benefit package (and agreeing that we should continue to explore what other benefits should be added [Model Mental Health Benefits were added today]), several task force members referenced things that were said by the people who spoke today.  Their statements were also critically important in the task force deciding to recommend that people should pay no premium up to 150% FPG and reduced premiums for people between 150 and 200%

If you have the opportunity, please convey my thanks to everyone who came today and my deep appreciation to those who shared their stories.  Please assure them that they influenced the outcome.”

Another panel member emailed me directly to thank me for my testimony, and said that recently it seemed that the panel had been moving backward, away from a solution that would help MinnesotaCare folks, but that our stories contributed directly to these big leaps forward.

Frankly, I’m shocked, and that’s a bit sad, because what happened on Thursday is a perfect demonstration of how democracy is supposed to work. That it’s surprising is a good indicator of how rarely it does. The other panel member wrote, “When the kind of real-life story you brought into the room is missing from the discussion, the discussion often ends up harming consumers and workers.” You’d think that these stories would overcrowd the boardrooms and meeting halls–heavens know everyone’s got them–and make decision-makers emotionally fatigued and jaded. And if these stories can be so powerful, you’d think there’d be a line out the door at every meeting, of people deploying their own experiences to influence government and corporations. But I was thanked for being courageous and powerful, when I felt anything but as I spoke of my life and my loved ones. Telling stories is what my family does, and this didn’t feel any different.

But let me tell you all–your personal stories have immense power. They sway voters, shape policy, spur movement, support progress. That’s the core strength the Minnesota campaign against the anti-marriage amendment has going for it–the entire strategy is based on telling our stories of love and commitment to convince people that marriage matters to everyone.

So tell them. Practice them on me, on your family and friends, on anyone who will listen. Then wait for the discussions where your values lie, where the hinges of your life join with your investments, your neighborhoods, your government, your world. Screw your courage to the sticking point, if that’s what it takes, and raise your hand. Say yes. Fill the silence with your stories.

Then watch the world change around you.

Pride and Prejudice

My nine-year-old son Connor finishes the partial hospitalization program that saved his life this spring on Friday. He’ll return to school, and his beloved friends and teachers and staff, for the last eleven days of the year. It’ll be a lovely reunion–he’s determined to surprise them on Tuesday–and he’ll get to show off the amazing new self-control and trigger management he’s developed, in a manageable, boundaried time period.

As part of his evaluation and treatment in the program, Connor was tested on a wide battery of skills and scales. Most irritating of these tests was a tear-your-hair-out boring attention test that required TWELVE FULL MINUTES of participation to determine a baseline. We laughed at the irony of his twice quitting an attention test because it bored him, but as soon as he tried it with someone to tell him to keep going, the test revealed no attention span issues.

Connor's first-place winning science fair project this year, about predicting compressive strength of materials based on their atomic structure.

Equally unsurprising to us were the results of his IQ test. He scored 136. Now, officially, there’s no “cutoff” for “genius level” anymore in the updated IQ scoring, but 136 puts him into the 99th Percentile for kids his age. In other words, only one percent of nine-year-olds score higher than that. His vocabulary and reading level is that of a 12th grader. According to a new study, that’s two grades higher than the average of the U.S. Congress.

This kid is staggeringly intelligent. Which comes as news to absolutely no one who’s ever met him. I feel far less proud than affirmed. These scores only quantify the bar that we’ve always felt we have to rise to as his parents. The doctor who evaluated him repeatedly emphasized how unusual Connor’s mind really is–the words “exceptional,” “exceed,” and “excellent” appear frequently throughout the write-up, and he urges several times that Connor receive gifted and talented services.

What did shock us in this evaluation was the statement that immediately followed the quantitative elements: “Connor indicates that he enjoys role-play games, which I would strongly advise against, given how these activities can result in him being more obsessed with fantasy than reality. Connor should be devoting his time and effort to normal activities socially, recreationally, and athletically that would be pursued by a nine-year-old.” Further down, he returns to this point: “Repeatedly, I witness children like Connor becoming consumed with fantasy and role-playing games, derailing their social and emotional development and ignoring ‘normal’ endeavors. The result is a pattern of unusual or atypical interests that ultimately are not shared by their peers, causing them to be viewed as unusual, odd, or atypical and, therefore, contributing to social rejection and emotional alienation.”

My first reaction was, “Holy crap, he thinks geeks are pathetic.”

I saw the Darling Husband’s hackles rise as he read, though he channeled it into humor, since the therapist who gave us the papers wasn’t the one who did the evaluation. Instead, he suggested that they give the doctor a call and tell him what Connor’s dad does for a living.

We shared a laugh at the time, with Connor in the room and unaware of what the papers said, but we were shocked and bothered by the obvious bias in the evaluation, and how utterly dissonant it was with both of our life experiences. How could anyone think such a wonderful hobby was destructive and alienating?

For both of us, fantasy literature and roleplaying games were the ultimate sandbox, an environment finally big enough for the universes our minds could imagine. Sci-fi and fantasy, both in prose and comic books, gave us colorful and expansive vocabularies that challenged us, in the days of stultifying spelling tests and reading assignments that left us cold. Games gave us math problems we wanted to do. They gave us new friends at home and around the world, hours of solo and group entertainment, and eventually, roleplaying games gave us each other. They are our hobby, and our work, and now our legacy to our children.

We understood the doctor’s concern that, if Connor was only into media far beyond his peers’ comprehension, he’d have no common interests with them. But what’s “normal” for a nine-year-old? Chess? No, no chance of obsession there (ahem, paging Bobby Fischer). Baseball? Just what he needs to stay away from unsociable statistics (or not). Guns? That can’t possibly turn out badly. In fact, I’d like someone to tell me what subjects are, in fact, more normal for a nine-year-old American boy in 2012 than heroes, monsters, superheroes, Star Wars, LEGO, and XBox games?

Sure, we’ve known our share of people who couldn’t function well socially in contexts that excluded their primary enthusiasm. Every joke refers to a D&D stat, or a video game plot, or a Monty Python sketch. Every anecdote ties back to a Star Trek episode. And yes, autistic kids get fixated and study the everlasting hell out of what they like. Some days, it’s all they can talk about, and that can be off-putting to other kids who don’t have the sheer bloodyminded endurance they do. But that’s not the vast majority of today’s geeks and gamers, and it’s certainly not Connor.

Connor got a make-your-own sonic screwdriver kit for Christmas. He may have been pleased.

Cam and I will take some credit for keeping his interests wide. Every time he finishes a book, movie, or TV series he’s thoroughly enjoyed, we’ve got three new things racked and ready to suggest. So you liked Star Wars, did you, kid? Here, meet this guy called Indiana Jones. Muppets tickled your fancy? Fantastic–watch this Wallace and Gromit short. Harry Potter and Doctor Who are pretty awesome, aren’t they? Let me tell you about my friends Sherlock Holmes and Lewis Carroll. And the same lack of inhibition that sometimes leads Connor to say tactless or oblivious things allows his passion and enthusiasm for his favorite things to bubble over giddily, and it’s absolutely irresistible. He’s a trendsetter among his peers. They don’t tell him he’s weird for liking what he likes–they want to know what’s got him so excited.

I know the kids around him won’t always be as forgiving of his differences. But the age when that happens was exactly when Cam and I found roleplaying games, and we weren’t alone. Neither will he be. In fact, he’s likely to be in demand as a creative, versatile gamemaster with deft control of rules and narrative, and a bag full of hacks and tricks. Heavens know, he’s learning at the feet of The Master.

We want to let this doctor know that we respect his experience and knowledge, but in this area, he’s got it flat wrong. Games knit society closer together. Connor’s entire existence, and his loving home, come from the power of those stitches. His whole life, since before he was even born, he’s been on the receiving end of love and support from the friends we’ve made through games. He’s already discovered the delight and the challenge in them, and he’s learning social skills in a safe, welcoming environment, in the community of gamers.

How on earth could he grow up healthier without all that?

May 2, 2012 - Psychology    11 Comments

First Contact

I feel like I’m living my life as an autistic in reverse. I was aware of Autism Spectrum Disorders and Asperger’s Syndrome generally, but quite frankly, I never applied myself to really learning anything substantial about them. I had trained as a crisis counselor while I was doing my undergrad at the University of Kansas; Headquarters is the oldest, continuously operating phone and walk-in crisis center in the nation. In the ’90s, their training didn’t include anything specific about how to talk to autistics, but their Rogerian approach and general attitude of acceptance provided me with a good footing for dealing with all sorts of neurodiverse folks.

Then,  my eldest son was diagnosed in 2008. That diagnosis was a blessing, to be perfectly honest. Until the school showed us how all the strange, inexplicable things about him actually formed a pattern that belonged to Asperger’s, the leading theory for what was wrong with Connor was crap parenting. When presented with a new situation, my primary coping method is to build a fortress of books on the subject, then read my way out, like you would escape a marshmallow dungeon if you were handcuffed by eating a hole to crawl through. (Hey, don’t mock–it works for me.)

The more I read, the more I recognized of myself. It came as a complete shock, how well the Asperger’s pattern explained pieces of my life that I’d never been able to make fit. The spotlight of memory swiveled back to all the times I’d been called “intellectually advanced but socially backward” in my childhood. My fixations on weird trivia, the First Ladies, native costumes around the world, Sherlock Holmes (so much like an autistic, himself), foreign languages, and others. How much like learning those languages was like learning to “read” people. All my weird sensory issues with fabrics and foods. My strong visual memory and how I see everything play out in my head as I read. My sensitivity to sounds, both good (perfect relative pitch) and bad (loud sudden noises are my only migraine trigger). A million little things, none forgotten, but suddenly in focus.

And while my primary preoccupation has been on using my own understanding of the autistic experience to help unlock doors for my son, the corrective lens of identity and memory also sharpens things that stayed in the background so long, I’d almost lost sight of them.

Like Clarence Treutel.

When I was nine, my mom remarried and we moved to Whitewater, WI, where my new stepdad was a professor of music education at the state university. It’s a gorgeous little town full of Victorian homes and stately elms. The university, with about 10,000 students, somehow manages to be insulated from everyday life, both for those on-campus and those off. Its presence made itself known in funny, mostly advantageous little ways. We had a disproportionate amount of cultural resources–world-class concerts, technology, a great public library. The people of color were most often Indian, African, or Asian, as opposed to Latino or African-American (this has changed a lot in the years since I moved away, thanks to a large influx of Hispanic workers for the big farms all around town).

Clarence was probably in his 50s when I met him, a perpetually smiling man with Mad Men-styled glasses and a salt-and-pepper buzzcut. He had an old bicycle that he rode sometimes, but mostly just walked along the sidewalks around town. He’d known my dad for a long time; my dad was very kind to him, and it didn’t occur for our family to treat him otherwise. He offered to walk my brother, sister, and me to and from our new school, a little less than a mile each way.

As we walked and talked, we got on well with him. His sense of humor and world outlook was that of a sixth-grade boy, generally, except for when it came to his interests. On town history, radio shows, old movies and TV, and professional wrestling, he could hold court. He was the only person I’d ever met who remembered as many facts, as clearly, as I did, and we genuinely enjoyed each other’s company. I didn’t know what autism was, then, and he wouldn’t have known either, even if his mom and he hadn’t been Christian Scientists, which kept them from ever getting a diagnosis. But he was my first contact with a mind like mine.

Only when the school year got fully underway did I start getting questions about why I was spending time with Clarence. “He’s so weird,” my classmates would say. “Did he ask you to sign his bike seat? Don’t do it. My brother did, and he, like, talked to him for years! Like they were friends.” I noticed how the older kids would abuse him as we went past the junior high; they danced around him, chanting stupid taunts, accusing him of unspeakable things, occasionally daring to take a swipe at his body or bike. He would scowl and wave them off, trying to come back with clever retorts, sometimes. But mostly, he just held his chin firm, sadness in his grey eyes. I learned how to chase that look away by asking him about his favorite things.

Just like I do now for my son, when the world makes him so unbearably sad.

His mother died around the time I graduated from high school, leaving him alone; his father and brother had died quite some time earlier. My parents became his Powers of Attorney, and they continued to treat him with care, patience, and affection until they moved away in 1995. Another family took over his care. I heard that Clarence died in 2002, but it turns out he’s still around–a good friend back home corrected my misinformation, much to my happiness.

Don’t bother looking for him on the Internet. I did. He’s not there. There’s a 2002 Walworth County tax record for the property where he lived. That’s all. No pictures, no mention anywhere. Like he doesn’t exist. Like he hasn’t walked so many generations of kids to school, their self-elected protector. Like he hasn’t learned to stop across the street, so the parents can’t complain that he was a pedophile, and the bullies can’t be heard so loudly. I wish I had a picture, so you could see his kindness. But that absence tells an important story, too.

I’m so afraid, when I think of all the autistic kids who are aging out of the schools and social services, adults as alone as Clarence, always outside looking in. How many of them will find families and friends to give them help and love? How many of them don’t know how to ask for it? How many of us will see them and judge the surface, never taking the time to find out what chases away the sadness in their eyes?

Mar 24, 2012 - Domestic Engineering    No Comments

The 3 Ss

I’ve got two anecdotes, neither worthy of an entire post, and both in danger of being forgotten if I don’t record them while they’re still in my memory. One’s sweet, one’s surreal; both are short–perfect for the weekend!

I went with Connor to a friend’s birthday party last weekend. We’re officially at the stage–and in a neighborhood/income bracket–when parents hold their kids’ parties away from home. The Cold War of Escalating Birthday Parties is in effect. This one was at a suburban community center that houses a mini waterpark. There’s only one waterslide, but it’s got lights on the inside of the tube, and you get to choose the music that blasts inside while you swirl your way down (needless to say, The Star Wars theme was most popular with this group).

Places like this, and bowling alleys, and skating rinks are high-stimulus environments, and sometimes the combination of excitement from the celebration and the sensory overload can overwhelm Connor and leave him vulnerable to sudden bursts of unexpected emotion and/or behavior. I’ve made it a practice to go along and hang in the background, lend a hand to the parents if needed, and just be there in case he needs help finding his balance again. It helps that I read to his class and chaperone their field trips, so I’m known as one of the “fun moms” and my presence is generally considered an asset by the other kids.

On the way into the building, I told Connor that I would be trying my hardest to stay out of his way and let him handle things on his own, but that if he felt like he was moving out of “the green zone” (green=good), I would be there as a safe place he could come to decompress. He looked at me funny, and said, “You’re a safe place? You mean, you’re a building?” I started to make a self-deprecating joke about being as big as a building, but he cut me off as he continued. “You know, you kind of are a building,” he said. “You’re a library! I mean, you read tons of books, and you read to me and Dad and Griffin, and you know tons of stuff about everything, so yeah…you’re a library.”

I was completely gobsmacked. I looked down at him and said, a little choked up, “You know, that may be the single best compliment I have ever received from everyone ever, kid.” Then I decided to lighten the mood. “You know how else I’m like a library? I’m always telling you to BE QUIET!” He laughed, then ran ahead to join his friends.

Footnote: The Darling Husband’s response to this story, when we got home later, was this: “Oh, I would’ve said you’re like a library because you inexplicably close up some nights at 7.” Har har, Funny Guy.

From the sublime to the ridiculous, here’s what woke me up this morning. Griffin always shares his dreams with me in the morning cuddle time, and since I’d been allowed (and actually managed to sleep in), he snuggled his way under my arm when the DH gave the go-ahead. I asked what he’d dreamt, and this was our exchange.

Griffin: I dreamed about Clifford. Polka dots.

Me: What about polka dots? He had polka dots?

Griffin: Yes!

Me: Huh, polka dots. What did he do with his polka dots?

Griffin: He went to the hopsital*!

Me: What did they do at the hospital about the polka dots?

Griffin (said like I’m the biggest idiot in the world)Moooooom. YOU know.

Me (utterly confused): No. No, I don’t.

THE END

*spelling reflects his pronunciation. Yes, we’re still at the “hopsital” and “pasketti” stage.

A Thousand Little Things

This is Gwen.

I’ve been working for a while now, in all my copious spare time, on organizing a fundraiser to help some dear friends. Given how closely to the bone my family lives from time to time, it may seem like an odd choice for me to use my time to make money for someone else, but my efforts aren’t about the money. The money’s just the most immediate way to begin righting a wrong.

Elizabeth and Shreyas have two daughters. Nirali is two years old and completely adorable. And Gwen is eight, whip-smart with a smile as big as the world. Gwen is also autistic. Her family has had to pull her out of the public school where she’s been going since they moved to California because of its stubborn refusal to follow the Individualized Education Program (IEP) that outlines Gwen’s difficulties, goals, and the school’s obligations to help her function at her fullest capacity. IEPs are legal documents, and the school has broken the law time and time again by refusing to provide the support Gwen needs to learn and participate.

If her family just pulls Gwen from the school, with no follow-up, there will be no record of the egregious offenses the school district has committed. Another family with their own bright, high-functioning autistic child might run into the same obstinacy and intransigence, and never know that their experience is part of a pattern that goes back years.

The only way to change things in the future is to fight now. And fighting is expensive.

In return for donations to help Gwen’s family fund the legal fight and prove that a private school can do what the public school refuses, I’m putting together six months of new short fiction from a fantastic roster of writers. Every other Monday (with occasional “freebie” days at random), subscribers will get something new to read. Readers of fantasy, sci-fi, horror, and generally offbeat stories will recognize some of the authors who’ve already committed their talents: Matt Forbeck, Kenneth Hite, Josh Robern, David Niall Wilson, Cam Banks, Steven Savile, and more. Still more authors are still stepping forward; I’m thrilled and humbled by everyone’s generosity. You can subscribe right here.

But I’m not just doing this for Gwen and her family, much as I adore them. I’m not doing this just because it’s the right thing to do, though it obviously is. I’m doing this out of gratitude for the thousand little things my sons’ school does for them, above and beyond Connor’s IEP requirements.

I’ve written before about the misunderstanding, the ignorance, and the physically and psychologically scarring bullying Connor received from both administration and classmates at the school where he attended kindergarten. His Asperger’s Syndrome was so obvious to trained observers that, when we switched him to a different school for first grade, we were called in for a meeting about his diagnosis before the first month of school was over.

Over the years, we’ve had meetings upon meetings around that packet of papers labeled “IEP.” They’re full of jargon, full of measurable annual goals, services and modifications, assistive technology considerations, and other daunting phraseology. But that jargon translates into real help that makes a real difference. It gives him permission to walk out of any situation that’s overwhelming him to the point that he feels a meltdown coming on. It gives him access to tools like fidgets and weighted vests that allow him to focus longer and be more at ease in loud, crowded situations. It justifies the time spent in social skills group and occupational therapy, when other kids are drilling on academics that Connor mastered a grade or two ago.

All those therapies and tricks and tools are incredibly helpful. But the things for which I get down on my knees in thanks, and that I wish for Gwen and every other amazing kid trying to cope in this noisy, gaudy, overwhelming world with their quirky superhuman senses, are the things that aren’t ever written into an IEP. They’re the points of human contact, of compassion from professionals whose hands are more than full with the everyday concerns of all the other “perfectly normal” kids.

It’s the way that, when Connor had a meltdown at school after a week of substitute teachers and his mom in the hospital, the principal offered him a hug, and just held him as he sobbed under the weight of emotions too big and complex for him to sort out alone.

It’s the way that the school social worker offered to use “special funds” to buy a pack of undershirts so Connor didn’t have to wear the pressure vest that helps him stay calm on the outside of his clothes, where it might be noticed and commented upon by his classmates.

It’s the way that they recognized that his need for a break in the day could be fulfilled by an activity that would raise his self-esteem and make use of his extraordinary talents, and set up a schedule to act as a “reading buddy” to second-graders who could use a little extra attention.

And it’s the way that these amazing teachers and administrators are extending the same caring resourcefulness to Griffin, who doesn’t even have an IEP, but has needed help adjusting to kindergarten. They created a “job” for him, carrying a crate of books to the nurse’s office in the morning, and back to the classroom in the afternoon, to let him feel proud of helping as he gets some much needed movement breaks. It’s the special desk they made for him, with faux fur, sandpaper, and a bumpy silicone potholder glued to the underside for him to fidget with instead of constantly touching his classmates and their work.

A thousand little things that make our kids stronger, calmer, more confident, more self-aware, and better prepared for the thousand little things that none of us can foresee from day to day. Like those waterfalls of brightly colored ten thousand origami cranes, fashioned by hand from paper and love, a labor of such dedication that it’s believed to grant the recipient one wish. Except that the visible sign of the grace and compassion of these people isn’t as perishable and impermanent as paper.

It’s the fast, bright, smart, funny, kind, curious, and beautiful boys that their actions are helping to grow. Every parent and every child deserves an education that gives results like this.

That’s why I’m fighting for Gwen.

Necessary Things: Reverb Gamers #7 & 8

REVERB GAMERS 2012, #7: How do you pick names for your characters? (Courtesy of Atlas Games.)

I’m influenced quite a bit by the setting–if there’s a clear analog to a time period or ethnic culture, I like to find a name that fits in the landscape. Just Google “baby names” and you’ll find all sorts of fantastic lists, often with meanings attached; www.babyhold.com has one of my favorites, with lots of ethnic names to choose from. I also read a lot, and books are fantastic sources of names. You might even keep a list of your own, with your gaming supplies, so you can remember the nifty names you come across in odd places. I’ve been inspired by names I found in alumni mailings, historical documents, garden centers, news reports, even on menus (I once had a pulp character named Wasabi Delmonico, after a steak description at a trendy bar and grill!).

And in case you’re the kind who does keep lists, here’s an incomplete list of character names I’ve used over the years (in no particular order): Selwyn, Rebekah, Julia, Rosemary, Margaret (aka Maggie the Book), Caledonia (Callie, for short), Bethan, Mercia, Anthea, Amara, Constance, Helga (the Wonder Nurse), Astrid, Marilla, Serafina, Lysimachia (Lysa for short; it’s the Latin name for Loosestrife, which is awesome for a fairy name), Stella Cordaric, Twink (the halfling barbarian with a soup pot for a helmet), and Freya. I know I’ll kick myself for the ones I’m forgetting, but if any of you dear readers can remember other characters I’ve played over the years, feel free to post names in comments!

REVERB GAMERS 2012, #8: What’s the one gaming accessory (lucky dice, soundtrack, etc.) you just can’t do without? Why? (Courtesy of Atlas Games.)

I’m terrible at sitting still; I have Busy Hands ™. So my essential gaming accessory is a craft to work on while the game’s in progress. Over the years, I’ve crocheted, knitted, cross-stitched, and made jewelry at the gaming table; I do this while visiting, watching movies, even during church services (thank the gods for circular bamboo knitting needles; no danger of a mortifying clatter when you accidentally drop your knitting). This is what I’m working on at the moment; you can see examples of my jewelry here.

Some people–even other women–this takes aback. From the reactions I’ve gotten from some men at convention games as I took out my tools and fibers, you’d think I’d just whipped out a breast instead. Somehow, it seems, my crafting was an unwanted feminine intrusion into their macho adventure space. In other groups, it was the norm. The battlemat was littered with scraps of embroidery floss, yarn ends, wire snippings, and stray seed beads. All the women around the table were industriously working away on their blankets, quilts, or wall hangings, stopping only to roll a handful of dice and briskly announce, “I kill it.” It was like the awesomest kind of quilting bee-slash-special forces raid.

I know that not everyone can deal with someone efficiently multi-tasking in their presence; it looks to them like I’m not paying attention as they play their part of the scene. What I try to make them understand is that I’m actually far less likely to stay focused on the action if my hands are busy. That physical occupation calms the restless, seeking portion of my mind, allowing the creative part to fully concentrate in the mental task at hand. I’d be curious to know how many other gamers on the ASD spectrum function better while stimming. I’m fortunate that my stim of choice masks what it’s doing for me in a sensory capacity. And when I’m done stimming, I have pretty things to show for it.

Jan 13, 2012 - Psychology    4 Comments

So Very Proud

Initially, I wrote this post as a note on Facebook last June, but I’m moved to repost it here. It’s been a hard week for a friend and her autistic daughter, as they struggle with a school that won’t give her what’s needed or even what’s right. It’s so hard to be a parent to these children and feel like we have anything close to what they demand, day in and day out. Every once in a while, though, you get a dividend, and somehow, other parents’ dividends show up in our paychecks too. So here’s mine, for you all, today.

Connor (in the tie-dyed shirt) leading our church group in the Twin Cities Pride parade, June 2011

Connor, Griffin, and I walked in the Twin Cities Pride Parade on Sunday, under the banner of our wonderful, inclusive church family (White Bear Unitarian Universalist Church). I hadn’t realized that the Pride Festival was the same weekend as Origins Game Fair, so doing it as a single mom of two rambunctious boys had not been in my original plan, and to say I was apprehensive would be a serious understatement.

Already, the trials of single parenting had affected my commitment to volunteer for OutFront MN, when my wonderful friend and neighbor who’d planned to take the boys Friday night called a few hours before my scheduled shift to say her daughter had been sent home from day care with nits. The OutFront folks were very understanding, and I spent some compassion capital on making dinner for all of us to share on a picnic bench outside.

But I knew the parade and festival would be unlike anything any of us had ever done, and I prepared as best I could: lots of snacks, sunscreen, water bottles, first aid kit–you know how it is with boys.  We parked near the beginning of the parade (in retrospect, a big mistake, so noted for next year), and met our co-marchers. Our ranks were swelled by members of another UU church (with drums!), and we took our place behind a paramedic crew on their ambulance.

We left about 100 ft. between ourselves and the ambulance, in hopes of avoiding the exhaust fumes, but I told Connor and another 9-year-old, Diana, that they could use the space so long as they danced and rode Diana’s adorably-decorated scooter to put on a show.

This was the order Connor has been waiting for his entire life.

For the next two miles or so, Connor danced with streamers and beads. He breakdanced (well, sort of). He did fake kung-fu. He swooped like an airplane from one side of the street to the other and back again. He gave high fives and tousled little kids’ hair among the spectators. He was the one thing he has ever wanted to be–the absolute center of attention. And the crowd LOVED HIM.

Asperger’s kids have to work so hard, all the time, to make themselves and their feelings smaller, to contain themselves to conform to societal norms. I’m not proud to say that, most of the time we’re in public, I live in fear of mortification at the next boundary he violates. For him and for me, it’s a constant strain to color inside the lines, and opportunities to say, “Go, be entirely yourself, all the way, as big as you want,” are vanishingly rare. But this parade was just that opportunity, and it was a joy to unhook the leash and set him free.

Any other kid would’ve been too embarrassed to try new moves on such a stage, or to dive into a crowd of raucous strangers demanding high fives–awareness of those social boundaries would tell us to rein it in, to tone it down, to contain the joy to just smiling big and waving. Griffin was shy for most of the parade (or intent on scouring the ground for candy). But Connor was absolutely free.

I don’t know if either of my kids is gay; I don’t care in the slightest. But Pride celebrates being your fullest, truest self, without fear or judgment, and the parade gave Connor the chance to do just that, and by doing so, he gave so many other people such immense joy. I was watching the crowd’s reaction to him–they weren’t laughing at him, they were just delighted by him, exactly as he was. And my heart felt so huge in my chest, so full it choked me with tears at times. He was free of constraint, and I was free of fear. We were both so very, very proud.

Game On: Reverb Gamers 2012 #3, 4, & 5

Ironically, catching up with work at Atlas Games has put me behind on Atlas Games’ blog project, Reverb Gamers. But it’s a quiet afternoon at work, with no big restocking orders today and my bosses home with sick twins, I’m taking a moment to get up to date.

REVERB GAMERS 2012, #3: What kind of gamer are you? Rules Lawyer, Munchkin/Power Gamer, Lurker, Storyteller/Method Actor, or something else? (Search “types of gamer” for more ideas!) How does this affect the kinds of games you play? For example, maybe you prefer crunchy rules-heavy systems to more theatrical rules-light ones.

This question refers to basic archetypes offered by game designer extraordinaire Robin Laws. If you’re not familiar these terms, he says most players fall into one of five categories, as summarized in an excellent blog post:

  • The Power Gamer: Get more powers and use them often and efficiently.
  • The Butt-Kicker: Enjoys combat and pwning NPCs!
  • The Tactician: Like to beat complex situations through thought and planning.
  • The Specialist: The one who plays a <insert character type here>. Ninjas and Drizzt clones are popular.
  • The Method Actor: Likes total immersion in a character’s assumed persona, whatever the costs!
  • The Storyteller: Enjoys exploring a story unfold around a character’s actions and choices.
  • The Casual Gamer: Shows up to be with friends and share the social energies of the group.

(These are also the character types in the fantastically entertaining movie The Gamers: Dorkness Rising.)  Of those, I’m clearly The Storyteller: I love telling stories with my friends around characters. I explained this more fully a little earlier.

But I’m quite taken at the moment with a different set of classifications, offered by my dear friend Rob Donoghue:

  • The Connector: Plays for story; rules are of negligible importance.
  • The Evil Muppet: Creative, whimsical, engaged, and in it for a specific kind of interaction: he wants the GM to bring the pain.
  • The Swooshy Giant Brain: Super-smart, but mostly just wants to stab things for fun.
  • The Rookie: Enthusiastic, rules savvy, in it for fun, but with not as much experience to draw on.
  • The Wildcard: Somehow both the most inspiring and most maddening player at the table, with a creative, twisted mind and enough rules know-how to take the whole game offroad.

These categories don’t make some of the assumptions that Robin’s do, the most problematic of which being the incompatibility of technical and creative emphases. Rob’s archetypes are patterned after mutual friends, which makes it personally fun, but they’re also more easily combined to reach a personal description.

In this system, I’m about 70% Connector, but at least 30% Wildcard; these proportions vary depending on my mood. It’s still all about the story for me, but some of my choices have been known to derail entire chunks of planned adventure. What can I say? It’s a gift.

REVERB GAMERS 2012, #4: Are you a “closet gamer?” Have you ever hidden the fact that you’re a gamer from your co-workers, friends, family, or significant other? Why or why not? How did they react if they found out?

I was surprised at how negatively some respondents took this question, so let me clarify. It’s pointing to the fact that some people feel that they have to hide their gaming, not suggesting that anyone should feel that they have to. And sure, if you’re writing a public response to this prompt, you’re probably not closeted anymore, but many kids had to dissemble with parents and teachers about what, precisely, they were doing with friends, so it’s not as alien a notion as it seems.

I’ve been incredibly fortunate in a number of ways that have prevented it from ever being necessary to hide my love of gaming. While very devout Christians, my family is the liberal, Methodist, God-is-love kind of Christian, not the kind that’s threatened by imagining worlds where other powers are possible. To their minds, we were kids who were reading, doing math, telling stories, and not committing crimes–what’s not to love? My work never made an issue of it, either. College is all about exploration, and I was only a lowly TA or adjunct, so nobody cared enough to be upset about my hobbies. And now my hobby is my work, at least for the time being.

All this being said, I know at least two good friends who do not want a word of their participation in gaming breathed outside the confines of the houses where the games take place. Both of them feel strongly that being “outed” as a gamer would be a liability to their careers, and I’m inclined to agree with them. Yes, it’s unfair, yes it’s silly, and yes, attitudes are changing. But they haven’t changed all the way, and some fields are more conservative in their expectations and acceptances.

So it’s still very possible to know these people. You may even game with them. Just something to be aware of when you go naming names in the posts about your weekly game. They’re not just being silly, and it’s nobody’s decision but theirs to let those around them know what they do for fun.

Me playing Gloom with some kids at the Student Council Game Day last May

REVERB GAMERS 2012, #5: Have you ever introduced a child to gaming, or played a game with a young person? How is gaming with kids different than gaming with adults?

The short answer is yes. I used to pack my copy of Kill Doctor Lucky when I went to substitute teaching assignments, and at some schools, kids would come up to me in the hall and ask whether they could sign into my study halls to play whatever I’d brought that day (yes, they asked a sub. Take a moment to absorb that.)

Now I have my own kids, and they’re finally at the ages (9.5 and 5.75, as of this moment) where I can enjoy playing organized games with them. I’ve also been doing this more for other people’s kids over the last year: I helped the Student Council at my boys’ school organize a Game Day, and I taught games at last fall’s Youth Pride Festival in Anoka, MN.

I’m not a particularly patient teacher of game rules, though, and I’m married to Cam Banks, a vastly more experienced GM with the skills and creativity to roll with whatever wacky plans the kids come up with, so I’m usually only in charge of teaching board and card games. That being said, it’s been unexpectedly fun, just over the last few months, to try out new finds and old favorites on my sons. They’ve really arrived at what I consider the earliest optimal age for games. Yes, I know they can play at much earlier ages; you don’t need to convince me. I just have this aversion to one particular feature of gaming with kids (or anyone): the complete devolution into silliness.

I love joking and kidding and having fun at the game table as much as the next person, but both the mom and the Aspergian in me absolutely lose it when kids start making the pawn figures knock each other around the table, and going up chutes and down ladders, and stealing money from the bank, and drawing cards until you get the one you want. Yes, I need to relax, and yes, more play teaches them play etiquette faster. I’ll be the first to say that my reaction is more a matter of me being annoyed than them being annoying. But it’s a barrier to enjoying games, and it leads to the urge to knee-jerk refuse requests to play something.

These things aren’t as much of a problem with RPGs, but sitting down to roleplay with kids requires a level of attention,energy, and uninterrupted time that isn’t always available in the day-to-day chaos. I really enjoy roleplaying with kids sometimes; we had friends’ pre-teen son at our games for several years, and it was just fine.

Gaming with my own pre-teen son is an astonishing experience. He thinks in storyboards, and he’s had an amazing grasp of narrative since he was two (no lie), so his capacity for character-driven drama and decisionmaking is far beyond his years. He’s also got that kid-gift for lateral thinking, which makes him a real Wildcard (see earlier) sometimes.

His Asperger’s brings its own blessings and challenges to the gaming table. His volume control goes away when he’s excited, which is most of the time when he’s having fun. He’s happiest when he’s the center of attention, so he’s not good with extended cut-away scenes that don’t involve his character (Cam does an awesome job of managing game flow to minimize this). And he gets really frustrated when the rules or chance won’t let him do what he’s picturing in his head; he takes it very personally when he can’t bring those visions to fruition. But his attention to detail, steel-trap memory, and typical Aspie fixations mean that, once he’s decided to master a system or if we’re playing in a world he knows and loves, he brings a level of sophistication that is frankly astonishing.

There’s nothing like gaming with kids to blast apart all the stodgy, preconceived notions experienced gamers bring to the table. As with everything else, they’re seeing it for the first time, and their perspective shatters the jaded accretions we’ve picked up over time. It’s good to be reminded of the wonderment we all experienced the first time we discovered the power to build worlds.

Dec 22, 2011 - Psychology    No Comments

Taste the Rainbow: Reverb Broads 2011 #20

Reverb Broads 2011, December 20: Life is a work of art, or so they say. What beauty do you regularly appreciate/revere in your life? (courtesy of Neha at http://whereyouarehere.blogspot.com/)

I experience beauty differently than most people. See, I’m a synesthete. What the hell is that, you say? Never heard of synethesia? The World English Dictionary defines the term as “the subjective sensation of a sense other than the one being stimulated. For example, a sound may evoke sensations of colour.”

I haven’t thought of myself as a synesthete until recently, when a discussion with another one ended with her saying, “Oh, no, you totally are.” And as I went into Research Mode, I discovered that synesthesia isn’t uncommon among neurodiverse people, especially those with Autism Spectrum Disorders, because their sensory perceptions are already slightly bent. 

As I explore the interactions among my senses more consciously than ever before, I’m discovering that my favorite things are my favorites because they register on more than one sense. For example, I love Pantone color 2757. It’s the deep rich blue of the sky just before full dark, or a Marc Chagall painting. But it’s also the color that fills my mind when the Bass IIs of a choir dip down below the staff, like in Franz Biebl’s Ave Maria. Those notes unfurl over me like a bolt of midnight velvet; I could just roll around in them, and an unbearably rich, creamy taste like foie gras fills my mouth.

And the air right now, that keen winter smell that portends snow (but doesn’t yet freeze your boogers, if you know what I mean), blows up banks of fluffy cumulus clouds in my mind, airier than the leaden walls of vapor that hug so close to the northern sky these days. It’s a bright, fluffy smell, just a fraction bluer than powdered sugar, with a clean minty smell. I want to eat that smell like marshmallows.

These associations dazzle me sometimes, and I know the distracted, mile-long stare that captures me when I fall into a whirl of sensations. I just wish you all could taste what I hear.

Oct 20, 2011 - Psychology    7 Comments

Overdrawn at the Memory Bank

Last week we got a letter from Connor’s teacher informing us that he would be receiving an award at the first student assembly of the year, on the 18th, at 1.40 pm.  Since Cam and I are blessed with flexible work schedules, we resolved to be there to witness his always-entertaining surprise and cheer him on.

So, on Monday, Cam picked me up from work at about 12.30; we snarfed down a burrito together by way of a lunch date, then headed over to the school. We breezed in at 1.40 on the nose. I saw one of Connor’s classmates in the hallway, where she hailed me with a big smile: “Hi, Connor’s mom!” (I love it when they call me that.)

“Hi, Lila!” I replied with a big smile of my own. “Why aren’t you in the assembly?” She kept smiling, but she gave me that look — you know the one. The one that says, “And the person I know is actually an alien.” At that moment, the principal came around the corner, saw us, and grinned.

“You’re a day early,” she said.

Honestly, what could we do but laugh? “Better a day early than a day late,” I said, trying desperately not to look as stupid as I felt.

Here’s the thing: I’m smart. I’m not bragging, or saying anyone else isn’t. But I’m pretty clever. I’ll also say that I test well, and I’ve studied a lot of things for a lot of years. However, this has absolutely nothing to do with my capacity to get by in everyday life.

This isn’t a “common sense” issue. As a child, grownups frequently said that I had loads of “book smarts,” but not a lick of “common sense,” whatever that meant. They also said I was “intellectually advanced, but socially backward.” To me, these things now mean that somebody should’ve been screening me for Asperger’s Syndrome as a child. I’m not 100% sure that’s my deal, but those platitudes were used to spackle over a lot of struggles I faced as I tried to interact with a world that didn’t follow the rules I’d been taught or the examples I’d observed.

In the Middle Ages, scholars used a mnemonic device called a “memory palace” to expand their capacity to remember texts in an age before easily duplicable books. I’m in awe of this technique and its users, because I know it’s beyond me. If my memory is a structure, it’s the haunted Victorian house on the hill outside town, its windows broken, shutters hanging by one hinge, siding peeling and falling away where frost and wind have pried stealthily over the seasons. Once, it housed a hoarder of the most random, eccentric sort: she frequented libraries, church rummage sales, abandoned schools, failed campaigns, futile protests, forgotten ancestors, buried archives, ancient cemeteries. There are gestures at organization — rusty file cabinets, ingenious labeling systems, half-implemented folder schemes — but if anything, they may only complicate the process, like removing something from its usual place “for safekeeping,” only to lose it because it’s not where you normally keep it.

The practical results are twofold. The first is the bifurcation of my available memory. I’ve got the usual short-term surface area that everyone’s got, which is pretty much like a very large refrigerator door/corkboard/Post-It wall. Then there’s what I call The Processor. It’s basically deep storage, and if I want something out of it, it works like the old European libraries used to. You have to write down what you want on a little slip of paper, give it to the scowling old lady behind the desk (who’s not at all convinced you deserve to be there at all), and wait patiently for the workers to bring it back from the shelves in their own time, so sit down with your silly pencil and white cotton gloves and shut up, you ungrateful American.

The Processor occasionally results in odd and embarrassing outbursts, as it turns up answers when you least expect them. My poor parents have been experiencing this longest. It usually happens for me with trivial knowledge, though not always, and it’s always something that I immediately know that I know, and feels like it’s on “the tip of my brain” but just can’t come up with. This feeling persists quite strongly for hours, even days, until with what feels like an audible pop, out comes the answer, so forcefully that I have the almost uncontrollable urge to shout it, no matter what’s going on around me.

The second effect of my messy memory palace is this: I’m pretty sure that my brain is at capacity. It can hold no more. If something new wants in, something old has to come out. You can feel it eject, even hear it: poit.

Unfortunately, though, what comes out isn’t always old or useless — it’s frequently the thing that just landed, and as such, might really be important. So, the new pediatrician’s phone number? Oops, there go the 5 things I need from the grocery store. Have to change my email password to meet some new security standard for work? You better hope your birthday isn’t anytime soon, because it just got kicked right out of my mental calendar. No, it’d be nice if I could shed all the words to “I Touch Myself” by the Divinyls — I mean, seriously, who’s got the balls to sing THAT at karaoke? Or my high school long-distance boyfriends’ addresses. Or all the lines for the first half of the movie Heathers (but only until after the 1st Heather’s funeral). Nobody needs that stuff.

But that’s not what gets evicted from that creaky, collapsing house on the hill. It hardly matters that fibromyalgia sends banks of fog rolling through like weather systems. And I wish sometimes that one of my sensory things didn’t mean having perfect, focused, vividly visual memories of such a large percentage of my life. If that house has ghosts, those reels play out in the rooms and down the halls at random intervals. Still, like every messy room, every disastrous desk, every once in a while, it yields the most surprising treasures, the most unexpected gems.

Mostly, though, my memory just leaves me kicked out of the room for ruining trivia games, and a day early for school assemblies.

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