1/29/2013

Jangled Bundle of Nerves

When I was much, much younger...and I'll have to find and scan that picture..., I used to do karate. Somewhere I still have my certificates. I loved karate...mostly.

Mostly. I was always ill before class--the normal shakes, vomiting and gastric distress (allow me my euphemism), so that wasn't fun at all, but I know why I felt that way--we had our sessions in front of a mirrored wall, and that kind of open display was torture. Everyone could see me, and worse I could see me, and I felt exposed and vulnerable. I have the same problem with physical therapy, too. All the patients in one room and where confidentiality is out the door since they can hear your therapist and watch you. And again, usually with freaking mirrors.

I was supposed to do physical therapy last fall--12 tortuous sessions. I attended one and never went back. Not enough anti-anxiety meds in the world.

Now I realize that most people would never believe that I'm tightly wired inside. After all, I have fuchsia hair.

Cool, right? No way I can be shy if I routinely have wildly colored hair, teach, and speak in front of others, and truthfully, none of that bothers me at all. None of that makes me nauseated or ill. I don't mind being noticeable everywhere I go. I don't mind standing out. I like being different and seeing my tribe grow with each passing month--the wildly improbable hair colors are really catching on.

But that doesn't erase my internal reality that I am often anxious, prone to panic attacks and in general, really skin jumpy. I thank the accidental cosmos everyday for modern medicine. Since my brain has to do its own thing, it's comforting to be able to throw meds at it to calm its ass down (and yeah, I know my brain doesn't have an ass...well...hmmm).

Things like the boy being out walking by himself--being gone for an hour--man, he makes a two mile walk stretch out--leave me breathless. Yes, I know he's 23. I know he's been doing this walk for several years intermittently, but as the minutes stretch on and I wait for him, well, my heart pounds.

I have a Stephen King kind of mind, and I often see the worst-case scenarios in my mind, so it's no wonder I'm just this flood of chemicals getting ready to fight or flight. I know he's fine, and he's got his phone, and honestly with find-my-iphone, I can track his walk if I want to. And even ping him just to mess with him, which I will admit I do.

And I know that my jangled nerves aren't just about him. Rosie plaintively offered up that none of her friends talked to her yesterday at school, and each night she expresses her sadness at having to go to school. I know she's fine there, once she's there, that she's not being bullied, that the teachers love her, but I do understand that none of that makes up for wanting to play but not being able to initiate. And I ache for her, wish I could fix that. Wish that my brazenness, and I am, I really am, would wash off on her.

Oh, I do. And Lily, bless her, she gets taller and more grown up each day. She's managing fifth grade better than I could have ever hoped, but this is uncharted territory for us both and I am worried about next year and the middle school...the junior high? oh my...where she will be with 6-8th graders. I worry.

I worry incessantly about things beyond my control and in my control. I suppose I worry because if I think about it enough, I'll see all the possible eventualities and maybe be able to steer things the direction I want. Oh shit, and then I collapse laughing because I know how absurd that is.

We cannot see every eventuality. Cannot predict every outcome, and sometimes, when we get our ass handed to us on a platter, as we recently did, it really shakes our foundation to the core. And it amps up the worrying, because if we couldn't see it--couldn't see that a good decision could end up twisted around and biting us in the ass (lot of ass metaphors today), then really? How good are we at judging character, especially in jobs where that's what we do?

I think that the biggest lesson I take away from the last few months and the failure of some of our decisions to pan out the way we'd hoped is that I am forced to confront that lack of control and the reality that no matter how hard I try to be pragmatic and rational and think things through, to look for where my own cognitive biases might be getting in the way, that I can't always do that. I can't see my shadow side, as Jung called it. After all, it's in the shadows.

And while admitting all that is painful, it's the only thing that works to calm down my jangled bundle of nerves--to realize I am human and make mistakes, that I am fallible and vulnerable and it's okay.

We can't see every eventuality. We don't know the future. But we can sure as hell pull up the find-my-iphone app and see where the boy is in his walk.

1/27/2013

Up and Over: All Over the Map

That phrase, "up and over," never fails to have me giggling. It's one of Nora Robert's favorite things to write in the Eve Dallas series whenever Eve and Roarke are engaged in coitus (for Big Bang fans).  Up and over. Up and over what?

I think I'd get tired of being constantly taken up and over---well, I don't know--I get it, the orgasm is awesome, and Roarke is dreamy, so probably no, a person wouldn't get tired of the actual experience. The phrase, though, perhaps...

I'll admit that I now use that phrase for other things, like up and over crazy...that line where I've gone too far, you know?

Of course, this leads me to ponder a conversation Kathleen and I had on facebook over this photo:


See, I removed all of my sock monkeys off the back of the couch when we put this new cover on and I decided they (the sock monkeys) could go to another room. To me, the room is so much less cluttered...but Kathleen rightly points out that's not really true. But I see empty space and think, put something there. Or three somethings there or a dozen things there. I dislike blank canvases and want to fill the space.

Like I fill my time. Hmmmm. Lily's started expressing how uncomfortable she is with silence, and so she talks whenever there's quiet, to fill the void. Bobby and I do quite well with silent car rides because even though we're not talking, we're companionable, but throw Lily in the car and that silence drives her crazy. We can't listen to music because Rosie screeches "too loud" way louder than the very low music, so I guess I can understand that to a kid who has never had silence that quiet would be off-putting.

I get it, as being home alone in a quiet house is freaky--so many years have been spent with children, loud and busy ones at that. I no longer know how to do quiet and alone and not busy. I'm not sure I ever did. I'm working at learning, though, because I have no choice. I'm bushed, beat, worn out. When I'm not teaching or carting kids around, I crash. Of course, one could argue that being asleep is not really learning how to be alone in a quiet house, but hey, we all have to start somewhere. And it does cut down on my shopping.

It's not just my house, though, that is filled. My head is, too. For years I scoffed at Rick's contention that he could be thinking absolutely nothing, never having had a silent moment in my head. I wake up tired, my dreams are so busy. I'm not really sure Rick's honestly had quiet in his head, but that may be because I can't imagine that state. Maybe he just doesn't want to talk about it. Too noisy to do that.

Sometimes, I think that I am trying to arrange my outer space to reflect my inner space, one where leopard print and zebra print compete with sunflowers and buddhas and books and toys.

 And a handsome husband, too, who I never
 get tired of seeing smile.
At least there's still some room to stretch out,
though, and do a horizontal 
"Friends, Romans, countrymen"
speech whenever the mood strikes.


1/24/2013

Book Review: We All Need People Skills



Talkability is a parent-oriented program offered by the Hanen Centre, and they have a guidebook with the same name. Geared towards parents of verbal children on the spectrum, it offers excellent tools on how to help children learn to engage in reciprocal conversations.

So often, as parents, we're lost on what to do to help our children. It can and is painful for us to watch when our kids are always on the periphery, not interacting with their neurotypical peers, and we flounder, trying to figure out what tools our children need and how we can help them acquire them.

And let's be brutally frank: we, their parents, might be floundering on how to help them because we find those same situations confusing and uncomfortable. How many of us wandered the edge of the playground, watching but not sure how to engage other kids? I know I was one of those who preferred to be with the teachers and talking to them or in the library where I could read to my heart's content. I found my peers often unapproachable, as if they were living in a completely different world.

Now, sure, I turned out fine without that toolkit...

And chances are, your kids will find their niche with positive support and acceptance, but if they are on the edges watching and wanting to engage, then giving them some tools, well, come on, that's a good thing to do. The more tools in their toolkit, the easier they will find it to approach others confidently and to make sense of what we often find to be mystical: the chit chat that people do to pass the time.

It beats standing there looking blank and planning ways to escape.

Talkability is colorful and most important, it's not intimidating. The skills it teaches are helpful for parents, too. I mean, how many times have you stood there at the school with all the other parents, shuffling your feet, avoiding looking at them and hoping to heck that they wouldn't ask you a question? I know that was an everyday occurrence for me when I'd pick up the kids from school. I'd get there early because I was terrified they'd come out the door and bolt into the busy parking lot because their teachers were distracted. So there I was, twenty minutes early every day for years waiting to grab them as they hit the doorway. I'd stand there, leaning against the wall, waiting, nodding as mom after mom joined me and we did this weird dance of glancing, nodding, shuffling, muttering something about the weather, enduring the awkward silences that popped up. If I'd had this book five years ago, both the girls and I would have probably found their early years of school easier to endure. It's that good a toolkit.

I still would probably find chit chat with strangers kinda pointless, but I'd be able to do it better, and that's a good skill to have. It beats closing your eyes and pretending you're alone. :)

Give the Hanen Centre a look. I enjoyed reading Talkability and will be implementing some of their tools with the kids and when I'm getting my haircut and the hairdresser asks me questions. 

Buddhas, Cats, Family, and Zombies

It's fun to watch the cats sit by Buddha.
And check him out. 
 Visiting my parents and 
seeing the kids be comfortable
in a new environment--priceless.
Having my dad and Rick spend time together...
awesomeness. Two of my favorite men in the world.
 Love the pictures that my third 
favorite man in the world, Bobby, took of them.
 And that Bobby randomly 
snapped pics of everything he saw.
And I do mean everything.
 Absolutely loving my ginger boys. 
Danny boy gets sweeter by the day.
Made this week zombie theme week 
and am wearing a different zombie tee 
each day to work.
Now that's fun. :)

1/22/2013

A Public Apology to Landon Bryce

Yesterday I wrote a post about in-groups. I closed it with these two paragraphs:
I don't care what caused my kids' autism. Research, if I were allocating the dollars, would be to what mediations would help both my children and the larger community they live in to work together so that they have a place in the larger community, so that they were valued members of the community. Jobs, housing, supports: those things matter to me, to my kids. To all our kids. Will there be a place for them? Will there be support? Will they have good, meaningful, valued lives? Will they have friends, family, and community?
Look, that's my in-group: do you give a damn about making the world a better place for our kids, all of them? That's my final and only real line in the sand, the only one that really matters: do you work to make things better for you and yours and everyone else? The rest is window dressing.
 I've been thinking about that, this idea of the larger, inclusive in-group that accepts differing perspectives, like the autism blogs directory does, and my personal in-group, which people in the autism community I can accept as part of the larger in-group but choose not to have in my smaller in-group. And then, as it inevitably happens, I get a bit of a kick that makes me really dig in and consider whether I'm truly living that idea of an in-group. Last night it was seeing this on Thautcast's facebook page:


That's what I went to bed with last night, running through my head. Had I done that to him, was I evil? Landon and I have a long history of not getting along, not seeing eye to eye, and back in April 2011 with the wandering code hotly being contested, I wrote a series of posts that were inflammatory. I don't think I would write those posts today--not the one linked to, though--I'd still write that. But I would have not written the first post or the second, which accused ASAN of being purposefully hyperbolic.  My own experiences as a mother with kids who bolted, and with a very real near miss where Bobby bolted into traffic and was yanked back at the last possible moment by my vigilant husband before a car could hit my son has definitely impacted how I view the issue of wandering. Remembering that, an event from 1998, still puts me in a panic today. Anything that could help keep my kids safe, well, it's easy to see how fear, near-loss, and having kids who have wandered right out the front door can bias a person towards a certain perspective.

But still, leave that aside. Landon Bryce has skewered me several times over the years. I've ignored them, much like Kim Stagliano ignored my skewering of her. It's a defense mechanism and a way of sorting the in-group. I could maintain a moral high ground by leaving Thautcast in the directory but personally ignoring Landon, whom I've never had a pleasant encounter with (at least it feels that way). It's hard to feel personally open to communicating or acknowledging someone you find distasteful, and there are people in our community that almost everyone feels free to disregard or to publicly show their disdain for, like John Best.  Why is the latter okay? I mean, really? Why is calling the Age of Autism folks every name in the book okay? See, none of it is okay. Not really.

We like our in-groups, and name-calling and whipping up on a person we all find distasteful helps us maintain that superiority. It's not pretty, is it? And it's humbling to realize we all do it.

Last year, having had several opportunities to understand what it was like to be on the receiving end, I emailed Stagliano and apologized for my words and any harm they had caused her. There should have been a way to disagree without getting personal, without name-calling, without wounding another human being.

I've concluded that the same must be true with Landon Bryce.What matters cannot be what the other person's motives are in their publicly calling you out. As a matter of personal integrity, if someone says that your words hurt them, well, ruminating over whether you should feel badly that your words caused harm is a good activity to engage in. You probably should, just so you know. Golden rule and all.

So I went to bed last night, stewing on it and whether my personal feelings were getting in the way of doing the right thing. As I fell asleep, I couldn't see how to reconcile my own feelings of anger, hurt and disdain (yeah, it's really hard to feel positive about someone who's rarely had a nice thing to say to you and who you feel regularly misrepresents past statements) with Landon's obvious hurt--a person doesn't stew over something for nearly two years, getting increasingly angry and hurt if there wasn't an initial harm done.

By the time I was up this morning, I had a migraine, along with an epiphany. As long as you're angry at a person, you cannot empathize with them and where they are coming from. So for  nearly two years, Landon Bryce and I have been mutually antagonistic towards each other, although my way of dealing with it was to ignore him as I felt that would be the most effective way of showing him how little his words and opinions meant to me. Yeah, that's not a nice trait and I'm not proud of that.

So, if I'm serious about in-groups, and my concern for whether they want to make a difference for the better, than I have to set aside my hurt feelings and really look at Landon Bryce's contributions. His facebook page is filled with pictures of autistic individuals. He spends a lot of time working to bring attention to autism issues--to the need to treat autistic individuals with respect. To see them as wholly human, with all the attendant frailties and flaws and to cut them some slack and to work harder to understand them.

He even apologizes when he thinks he's done wrong. He attempts to make amends. Yes, he reacts hotly and often from a place of anger. So, yeah, it is and can be distinctly uncomfortable to be on the other side of that anger. Still not an excuse for failing to consider whether his underlying message has something relevant to say about one's own behavior.

I woke up this morning no longer angry at being the recipient of so many angry words from Landon. He's been like a bear with a thorn in his paw that gets infected. Sure, he's lashed out, and lashed out hard, and at any time in the last 21 months, I could have pulled that thorn out. I'm a wee-bit stubborn, if you hadn't noticed.

No longer angry, I could try to see it from Landon's perspective: 21 months of being ignored, rendered invisible.  That's not right. So, even though he blocked me awhile back, I sent the following message to his Thautcast page. I don't know if he can see it, but I know he does read Countering. Here's what I sent him:
I have no idea if you can see this since you have me blocked, but I wanted to apologize. If my words from nearly two years ago can fester within you and continue to make you feel that angry and hurt, to the point of suggesting I'm evil, obviously my words were hurtful and I am sorry for the pain or distress I caused you. I will also publicly apologize on my blog today. 
To Landon Bryce,

I screwed up and I was unkind. I let my own personal emotions get in the way of listening to you. My words obviously wounded you, and it was irresponsible and unkind not to feel badly about that. Even worse, trying to out-stubborn you only allowed your feelings of hurt to grow. I apologize for the damage that my words and then my lack of words caused you.

We're not all going to get along in this autism community. We're not all going to agree. We're not all going to be friends. None of that is an excuse for bad behavior. I behaved disrespectfully because my dander was up. I felt threatened, and this clouded my ability to even want to see things from Landon's perspective.

So where the rubber meets the road, the right thing to do is to own that and make amends. Landon Bryce tries, in his own way, to reduce bigotry, to stand up for the disenfranchised. He doesn't always do it in a way I can agree with, but it doesn't mean he deserves to be ignored.

That doesn't mean I expect that Landon will accept my apology. There's been a fair amount of rancor on both our sides, and it's played out in different ways. Where he has usually been very vocal and upfront, I have in the past dealt with my frustration and anger in what I have to admit is passive aggressive behavior that was designed to poke the stick at him just a little more. After all, if he was going to be mean to me, I could do him one better. And I did.

I'm sorry for that, too.

Shit. I really am. I didn't know last night when I went to bed if I could truly write a piece directly addressing Landon and be sincerely sorry for hurt I had caused him. I was too angry. Ah...I really was. And now I'm really not. I had to stop and think about my kiddos and how they process things, how long Bobby can hold onto a hurt and how it festers for him, how I ache when I can't make it better. And then I had to be able to consider that Landon was and does process similarly and remains fixated, that wound just getting ever deeper.

And then I had to realize I do the same thing--fixate, ruminate, turn it over every possible way, write about it, sometimes through fiction, and I could see that Landon and I might just process somethings in the same way.

And it is humbling. And it should be.

I teach my kids to own it when they make a mistake. I try to model that. On this, with Landon, I failed to own my mistakes. I got my dander up. And I kept it up. I was wrong, and I apologize for the harm I did.

In the end, if I really meant this: "That's my final and only real line in the sand, the only one that really matters: do you work to make things better for you and yours and everyone else? The rest is window dressing," then I have to conclude that Landon and I are on the same side and to fail to address the rancor and the harm means I would continue to be a part of the problem rather than a part of the solution.

I'm sorry for hurting you and not making it right when I should have.

And while I'm owning it, I apologize to Ari Ne'eman and Meg Evans for failing to reach out to y'all first before writing in anger regarding the wandering code. Your concerns for how it might be misused were legitimate and understandable.

1/21/2013

Inevitable Result of In-Grouping: Screw That, I Say

I've been online for nearly four years now, actively blogging and commenting at places like Huffington Post, seen and participated in the divisions of the autism community, watched the divisions increase, crossing over each other as various issues regarding cure, accommodation (who could be against accommodation?), biomed, neurodiversity, parent bloggers against parent bloggers, parent bloggers against autistic bloggers, autistic bloggers against autistic bloggers, and so on. For the most part, in order to be openly and as completely inclusive as possible on the autism blogs directory, sometimes that means I have to put my fingers in my ears and go la-la-la-la because the directory isn't about me and my beliefs (other than about creating a space where all views are represented short of hate speech).

It isn't just the autism community where people divide and conquer and group memberships shift as the issues shift. It's politics, religion, even whether you like Big Bang or not or think American Idol is improved with the new sets of hosts. It's whether you think Glee is great or How I Met Your Mother has gone on five seasons too long and for gods' sake, how long does it take to tell the story of how you met your wife?

I would even be willing to take wagers that if there is an online scrapbooking community, even it manages to do what we do in the online autism community all the time: make lines in the sand. Lines in the sand.

 I've spent a lot of time thinking about lines in the sand over the years, what principles are so important that I can't work with another person if they don't share that principle. I've spent serious thought on how I form my larger in-group (the directory, where even people who have serious issues with me personally are represented) and my smaller, personal friendship group. What things are so important to me that the two groups can't be the same?

Part of that is sheer size. There are only so many people we can know well and communicate regularly with in order to maintain friendships. Part of it is the level of willingness to allow differences of opinions and beliefs. Part of it is chemistry--how much do we have in common, how much do we share the same likes or perspectives. And part of it is the lines in the sand--lines in the sand that we all inevitably draw, even when we don't want to.

So, yes, of course, the following is written over the latest brouhaha (which managed to bring out a person almost all of is autism land can agree is uniformly disagreeable) in autism land concerning Amy Lutz's piece in Slate, but the reality is it also isn't (and shouldn't be construed as being directed at any specific piece or person, as it is not), because this is the way we all are, in so many different things: the need to define who are by who we associate with, and perhaps most importantly, who is on the other side of the line.

Let us first be outraged. Let us mull on it, swap ideas with our friends, then all agree to take the person to task.
 Let us show our moral superiority by the severity of our attack, our censure on the other person.
Let us seek to spread our beliefs and how they are right as we use this person as an example of what not to dare to speak aloud or about.
And then let us slap each other on our backs, proud of what we have accomplished with our dogpile, assured that we are the purveyors of what is right, what is good, what is essential.
No matter what the topic, no matter what the agenda, this is how we do things. We circle our wagons. We make sure that we have no traitors amongst us. We cleanse our in-group by who writes with us and who stays silent. Mea culpas once we've dogpiled are welcomed and expected and allow us to let the interloper back into our exclusive club.
But fail to be sorry, fail to change your opinion to match and you are a pariah.
It doesn't matter who you are, what your neurological wiring is, and whether you think you are a minority, the underdog, or a majority, the clear victor. The dance is the same.
Divide and conquer. Slam down the doors on any kind of calm, rational discourse and push as hard as you can false dilemmas so that others feel forced to choose their side of the line in the sand.
It's all about inclusion until it's not. And the lines in the sand have crossed all over each other so that we inevitably are left alone, standing in the ever-increasingly tiny space, knowing that it is inevitable that those sharp, cutting lines in the sand are going to slice us into ever smaller pieces until nothing is left at all, and everyone is the loser in the game of life.

There's comfort here, though, familiarity: it is a dance we all do. To pretend otherwise isn't noble, and this isn't about who is right and who is wrong. This ought to be about who we want to be and what we want for ourselves, for our children, for our community.

No, the reality is we don't all want the same things, and that's got to be okay. It has to be, or we really will be islands, standing alone, because eventually our need to be right, to create sides, will mean that it extends into every possible area of our lives, and we will be forced to realize that we are all so drastically different that if disagreement signals the enemy, then we are all enemies.

And seriously, if Kathleen and I can accept that she thinks fruit should never, ever be dessert, and I think it should in general be dessert, and not let that divide us, then isn't there hope for all of us?

Lutz's piece was bound to and no doubt meant to piss people off. Specific people, as she named them. She tied people she decided were out-and-out frauds and people who are facilitated to the neurodiversity movement and she flatly said that ND was hurting her son. In  Lutz's perspective, and in Allison Singer's, it's a zero-sum game with only so many slices of the pie to go around and any that goes to higher functioning takes away from lower functioning. Lutz drew lines in the sand and the community responded in kind. It certainly doesn't help her that B*** joins in, backing her, although it would be completely unfair to lump them together.

Is it a zero sum game, though? Does research that benefits the "higher functioning" like my girls take away from those like my son? Are there only so many dollars out there?

Is that relevant? I'm not sure, at this point, how any research is actually, directly, helping my three kids. So much of the research is poorly done, with small samples that don't extrapolate out to the autistic population. But it's not just about my kids and whether current research or future research will benefit them. How will it benefit future autistics? Who defines benefit?

I don't care what caused my kids' autism. Research, if I were allocating the dollars, would be to what mediations would help both my children and the larger community they live in to work together so that they have a place in the larger community, so that they were valued members of the community. Jobs, housing, supports: those things matter to me, to my kids. To all our kids. Will there be a place for them? Will there be support? Will they have good, meaningful, valued lives? Will they have friends, family, and community?

Look, that's my in-group: do you give a damn about making the world a better place for our kids, all of them? That's my final and only real line in the sand, the only one that really matters: do you work to make things better for you and yours and everyone else? The rest is window dressing.

Too Much!

Yes, brought to you by the woman whose last post is "Order is in Order," in which I discussed putting things to right in my home and life. And here I am two days later hollering, in the same spirit as Rosie's "too loud!" too much! No, Kathleen and Stormy, not too much stuff. As if I could ever conclude I had too much stuff.

Too much stimulation, too much input (and no, that's not from my abundance of stuff), too much to do, too much to stand up and fight for or against, too much noise at times (this morning the living room was grand central station loud).

Too much. I have 96 emails from students to read, respond to, and mark in the grade book (and I've already handled at least 70 or more this week). I have lectures to put together for this week class, so have been reading critical analysis of Slaughterhouse-Five all week, trying to pull the gold out to read and discuss with students (and somehow that ties into this book:
Product Details.

Yeah, so I'm totes reading this kids book to my students this week if I can keep from laughing hysterically that Jerome Klinkowitz seriously and effectively compares SL-5 to a Sesame Street book and Vonnegut to Grover. Sometimes, the English world is completely awesome and fantastic. At least this helps to bring me back from the edge of skin jumpy some and focuses me, but seriously, I feel like the dog in Up: squirrel!

I am overwhelmed, I think, and it's week 2 of the semester, but seriously, seven comp classes, 175 students...three novels plus films and several essays to read and analyze (and present). I mean, it's a good overwhelmed, and it's an overwhelmed I did to myself, but holy crap on a cracker. 

And we're still sorting things here, putting things in their proper place, working at reframing things, trying to figure out where we are and where we want to go and how we're going to get there.

There are things I have to do that I don't want to do, like take all three kids to the dentist Wednesday morning. And bigger things like filling out the paperwork for this year's guardianship. I don't like those papers. I like them less each year. When will my role as mother and protector and provider for my three children not involve defining them in terms of their "deficits"? When will my interactions with the school, medical community, and bureaucracies not involved this deficit-based model?

Isn't it more important that Bobby's cooking skills continue to improve? That he loves to dress up the plates, garnish with tomato slices and pickles? That he delights in experimenting with seasonings? Isn't it more important how he and his sisters are entwined in each other's lives, sharing the same interests with the same obsession and that they can spend hours wrapped in those obsessions together?

At any rate, that paperwork won't fill itself out, and I recognize that it does have to be deficit-modeled. I just don't like it. I hate it and it's the one thing I don't let Bobby look at. Yes, we've talked about what guardianship means, but that doesn't mean he needs to see that paperwork. 

Too much on my plate, and yet a lot of it I put there. I'm still in the process of shedding some of those excess commitments that are don't-want-tos and don't-have-tos. It feels better with each one I let go. Too-much becomes not-as-bad.

Shedding things in the online autism world continues, as well. Figuring out what battles need to be fought by me personally, what things I can ignore, where lines in the sand have to be drawn and when they don't have to be, that is a continual process. Figuring out where our family fits in the scheme of things that are important but divisive in the online autism world is absolutely a one-woman show in this house, as the kids and Rick have weighed in for years that it's drama they don't care about.

Our home life, our interactions with each other, well, yeah, autism is in the mix because we're BAPpy or autistic here, but it's the background music that plays, not the focus of our attentions. We're our own normal, and we like our home, our lives, and who we are together as a family. 

It's this kind of reframing, refocusing, that helps to pull me back from the too-much, that places things in order.

Letting go of the flotsam and jetsam of online drama, redirecting my attention to my family and my friends and letting people argue over each other online without weighing in directly, that's reducing the too-much to the just-right.

I can't let go of all online things because so much of it is important in teaching students about how people think, how they structure their arguments online, how they interact with each other, how critical thinking often is absent: those are important things. I'll continue to separate the necessary from the ridiculous and look to my kids and their wisdom regarding the online world: block and delete--who needs made-up drama?

And I'll breathe deeply and look at the positives.




1/19/2013

Order is in Order

You know, I've become increasingly grateful over time that we don't have satellite or cable tv--no 24 hour news channels, and with how both Bobby and Rosie react to the news, we don't even watch the local channels over the antenna anymore. Even Lily necessitates having the morning news off--she doesn't freak out over bad news; she's just stuck, unable to move away from it, a deer caught in the headlights.

So I miss a lot of the news on tv and no amount of reading yahoo or google news or the local newspaper online can make up for missing the kind of spin that watching CNN or Fox can put on what's going on in the world. And I have to figure this is, in general, a very good thing. Since my reading of news is generally with kids hanging over me demanding something, I don't tend to get too saturated in that, either. I get the headlines, use Science 2.0 to keep up with science news, the autism blogs directory to get a feel for what people in the autism world online are focused on, and use facebook to keep up with my friends and my local news. It's not a bad system for keeping a finger on the pulse of all things controversial without having to be overly inundated by it. It also helps that not having talking heads talking keeps the house a wee bit quieter. Just a wee bit.

In recent weeks, we've made changes to the house and that have helped to restore some order to our house and to bring a bit more quiet to the front. Well, to the front room, at least. We converted an extra bedroom into a media room for the kids, and today we moved half our living room furniture in there--seriously, they got the new furniture. It looks lovely, and I'm jealous. What a fun room, and how awesome it will be when we can give them a bigger tv. But what that means in practical terms is that there is quiet in the main part of the house.

Quiet. Blessed, sweet, sweet quiet. Until one of them comes running out, screeching because the other one set her off. Or before all three of them converge on the kitchen arguing heatedly about something regarding anime and manga. Like how anime is spelled or how manga is pronounced. Have I mentioned we're pedantic out the wazoo here?

I'm not sure what I'd do with a lot of quiet. I think I'd go stir crazy. I like my kids, their busy, loud, wonderful conversations and arguments with each other. I do. I really do. They are incredible people with vibrant personalities and quirks that are endearing. I'm grateful for who they are and the fun and excitement that they bring to my life, and even when my head is about to explode as I drive them to their school or volunteering in the morning, I love hearing them weave in and out of each other, sharing the same keen minds buzzing with curiosity and their sharp, opinionated voices trying to out reason the others. I even adore, although not repeatedly, Rosie's increased ability to advocate for herself, her cries of "too loud" ringing out any time, and boy do I mean any time, the stereo hits 5 on the volume (and 5 is freaking LOW). Personally, I think she's got a thing against Adele and Roy Orbison because she is at least a 10 when she's yelling "too loud."

Change, although it's often resisted, can be a good thing. It shakes things up, takes us out of our comfort zone and refreshes us, bringing out creativity and reordering. This is all good, even when it's "too loud" or when we find ourselves dealing with unexpected moments of quiet, especially after moments of complete disorder and chaos.

 sorting chaos
 and putting it to rights.


 happy sisters
 fixing the living room
 grateful for a husband who does the heavy lifting


 Danny doesn't know what to think of the space.
Indeed.


1/17/2013

Rest Wherever I Can Get It and Other Lessons

There are always new things to learn and opportunities to fine-tune lessons we were certain we'd mastered.

Blogging, social networking, teaching, parenting: all offer multiple chances to practice.

Some of the things I keep relearning I thought I'd share:

Religion, politics, gun control, parenting skills, who has the right to talk about neurodevelopmental disorders and mental illnesses, health care, unemployment are all topics bound to piss people off. Open discussion is rarely welcome and rarely had. Instead, these are all topics that lend themselves to polarization. If you want to sort your friends into handy groups or lighten your friend list, go there. The more of these topics you can add into one discussion, the more points you earn because you maximize your chances of alienating everyone in your social network.

Some arguments apparently never die, and four years later, you can still see some of the same people arguing about the same topics with the same exact fervor and rhetoric.

People who were assholes four years ago are still likely to be assholes today.

Some topics are NOT worth writing about publicly because there are people out there who are batcrap &@$@$. No, I'm not typing that word, as I've learned that batcrap ***** people don't like to be called that.  No good can come from some topics being publicly raised.

Naps are an absolute must any and every chance you get. So is going to bed early. And once your kids are big enough to tuck you in, you should let them.

If you don't see it happen and don't hear it, you don't have to deal with it. There are a lot of things we shouldn't see or hear. However, there are also a lot of things we should see and hear and act on. Bullying, belittling, abuse are all things we should stand up and fight. However, we should also be willing to call bullshit when a bully gets called on his or her bullying and wants to insist that he or she is being bullied. Calling a person an ass when she's an ass is name-calling, and if it's backed up by examples, it's justified. It's not bullying.

The online world is often nothing like the real world, but it's pretty cool when they intersect in a positive way.

Some of the best friends in the world can be people you've never met in the real world.  That's hands down the best part of being online.

Facetiming your children when you're in bed for the night is a whole lot easier than getting out of bed and walking to the other end of the house to see if they are in bed.

1/16/2013

Heaviness: Euthanasia is Not For the Faint-Hearted

It's all over the internet now, the story of the twin brothers in Belgium who were deaf and going blind and decided not to kill themselves in a joint suicide, but instead to seek legal euthanasia. According to the Daily Mail, they spent two years seeking that permission and were finally able to have their wishes carried out four weeks ago.

These were not assisted suicides. The brothers didn't swallow pills or give themselves an injection. They were euthanized in a manner similar to how pets are: given a lethal injection.

They were not men suffering from a terminal illness. They could have lived many more years, learned how to adjust to the blindness, worked on ways to communicate with each other with their sight gone. And yet, they wanted to die, but not by their own hands.

Not Dead Yet, an organization that I tend to support, has covered this. Stephen Drake is an eloquent, fiercely determined writer and someone I consider to be an ally in the fight for disability rights. So I was interested to read his coverage. He's absolutely correct that this tragic incident, with people from all over the world commenting on the various reports with approval is an odd reaction compared to how we react to soldier suicides or to suicides in general. There is a real disconnect in how people and how animals are valued, as well. Drake brings in euthanasia of pets, and  he links to an earlier piece he co-wrote on the myths of pet euthanasia which has been weighing on me since I read it.

As my friends and regular readers know, my family has lost five pets in the last 18 months because our pets were suffering and the humane choice was to be there, to hold them, to honor them and to euthanize them. These were not choices that were made quickly or easily, contrary to Drake's opining that

If we think about it, probably most of the people we've known have had their pets euthanized when they were neither terminally ill nor suffering. They often involved the increased expense and work that can accompany the chronic conditions aging animals develop. Cats that miss the litter box. Dogs that snap at owners when surprised. Expensive medical treatments. Failing hearing and eyesight. They're slower and less responsive to us.
Animals, who live in the moment, don't spend time dwelling on the "good old days" when they could run like the wind, and mourn the loss. That's a human characteristic -- and something we like to project on our pets so we can tell ourselves and our friends that we had them "put to sleep" because they suffered, avoiding the messier truth.
Perhaps this is true, that some, that many, choose euthanasia for their pets not because of an animal's suffering. But that's not the case in our situation, and there's a part of me that takes umbrage at the charge that euthanasia is done out of expediency or to avoid a "messier truth."

There's nothing expedient about holding a beloved pet and watching him or her die. There's nothing expedient about agonizing over the decision for weeks, months, even years, like we did with Ibit, who had diabetes. No. That decision shouldn't be easy and it shouldn't be expedient. And I doubt it is for people who love their animals.

Are there callous people who put animals down needlessly? Without a doubt, but I'm not sure how much mileage one can get out of being against the euthanasia of pets when we eat, according to PETA, 27 billion animals a year in the US. It seems to me that for consistency sake, if we are against euthanasia for people or for pets for any reason, then logically we must also be against the consumption of animals for sustenance or for any products made from animals.

It may be, though, that Not Dead Yet is simply pointing out the inconsistencies in the pro-assisted-suicide and euthanasia camp, rather than advocating against euthanasia in pets.

I don't know.

Drake and Sobsey's main beef is with the comparison of pet euthanasia to how we let people suffer: "Over the years, we've gotten thoroughly sick and tired of the repeated use of the myths surrounding pet euthanasia as an argument in favor of providing the same 'service' for humans."

They use statistics to show that most animals are not killed because of suffering, but I'm not sure that this is relevant to the argument that euthanasia of animals through the administration of an anesthetic followed by an injection of a medication that will stop the heart is somehow not humane and kinder than watching a human being die a long, protracted, and often painful death. Having seen both--pets peacefully released and hospice patients die natural deaths, especially those that lingered for weeks, well, I can tell you what was certainly easier on the people who loved the dying person or pet.

And maybe that's what it boils down to: ease. We're supposed to be able to relieve suffering, stop the pain, but that doesn't happen for all terminally ill persons, and it certainly doesn't happen for pets, even when the owner does everything he or she can. Sometimes prolonging life is horrendous and horrifying for all involved.

That doesn't mean I'm in favor of euthanasia for human beings. I certainly think that the state-sanctioned euthanasia of these twin brothers was a tragedy that could have been and should have been avoided. With appropriate support and assistance, these men could have lived many more years. And now, their family and the world will never know, nor will they, whether they could have adapted to blindness and lived what they would have considered good lives.

Being disabled is not equivalent with suffering. It isn't. Do some disabilities entail suffering? Yes, I think we can say that's sometimes true, but I'm not sure that suffering is inevitable. Suffering is a state of mind. Two people can have identical disabilities, deal with identical levels of pain and yet, one of them will suffer, while the other will not. Suffering is a specific meaning attached to physical and mental states.

We can rally, work to fight against suffering by creating a society that sees value in every human life, that believes accommodations and acceptance are necessary and mandatory, so that all people may reach their potentials, whatever that potential is.

Euthanasia, assisted suicide, suicide: those things should become an anathema to civilized societies that value human life. Ah, but, and here's the rub: we don't. We don't value human life. We don't believe that everyone deserves to have their basic needs for food, shelter, and work met. We don't believe that children have a right to be safe from mental, physical, or sexual abuse. We don't. Not uniformly and not across the board.

And that's the real problem. We don't value human life equally. Until that issue is resolved, well, there will be tragedies like the twins. There will be people who suffer as they die, and even worse, people who suffer as they live because they are not valued and seen as worthy of basic human compassion.

We can conflate pet euthanasia and the way we treat the terminally ill and the disabled or we can separate them and get to work on what a society that actually valued all human life would look like and then figure out how to build that society.


1/15/2013

Essence

I've been sick, both heart-sick and the regular wear-you-down nasty bug-sick (yes, my hyphenation is somewhat random--and yes, I teach English). I won't go into all the details, but between losing Aphrodite, worrying about the ginger brothers with their UTIs, stressing over events both personal and national (reading about Newtown and the grief of so many families among other tragedies), my heart aches and I find myself physically and emotionally beaten down, ready to literally pull the covers over my head and stay snug in my bed in my darkened bedroom, hiding from reality, which can, my friends, as you well know, suck royally (I was going to say sucks ass, but, well, perhaps that was too vivid an image).

I've spent the last two weeks alternating between going out into the world and doing what I must and coming home and sleeping, not because I want to, but because my body goes into shut down mode and there is no option.

I think, though, that perhaps I am catching up on the sleep debt, and although my heart still hurts and my chest aches from coughing, that I am on the other side, that things are getting back to my normal, and order is slowly being restored.

Order being restored, though, is perhaps different than other people's order. For me, it's rumination, fixation, and the constant questioning of how we relate to ourselves, to others, how we maintain honesty and tact at the same time, and how confusing language is-how easy it is to make things mean whatever we mean. Maybe that's why naps are in order, though--that I wear myself out trying to tease the meanings of things. Take, for instance, "time is of the essence."

There's a visceral, sensed meaning where defining that idiom with words is a strain. Then there's looking it up to see where it comes from, what it means to others. Of course, I do both...the girls love idioms and trying to figure them out, so I will hit them with this one this afternoon.

Essence...

Deadlines not withstanding, as the phrase refers to, time should be of the essence. To be less than profound and state the obvious, we are all on our own deadlines, so making the most of life is, should be, important.

But who knows what the most is and why has something so incredibly personal, important, essential, become hackneyed and clichéd? Okay, that's redundant, but see what I mean?

I may need to go back to bed and pull the covers back over my head and hibernate awhile longer. And maybe the cold medicine is possibly impacting my ruminations.

Hmmmm.

1/13/2013

Emotional Chaos

I spend a lot of time trying to figure out my emotional states. I don't mean I spend long periods navel-gazing, of course, but instead, what is it, exactly, precisely, that I am feeling? Why am I feeling that way? Is it an appropriate emotional response? Do I need to reframe the situation and alter my emotional response? What if I keep feeling one way while knowing intellectually that it's not the appropriate response? Even worse, what if my rationalization for my physical responses (shortness of breath, flushing, a sinking feeling in my stomach, etc.) is completely off the mark (as it is likely to be since we tend to connect our physical states with the situation we find ourselves in)?

So, if I, at my mid-forties, can have such a hard time, imagine how hard it is for kids in general and those specifically with language difficulties to connect words and meanings with their physical and emotional states. A lot of what we do as parents and educators is help our children sort all that stuff out and figure out appropriate ways to handle all those messes we feel inside, where words are often inadequate even when we have a wide repertoire at our disposal.

When  we feel multiple, conflicting emotions, it's even worse. Sorting them out, deciding how to respond, whether to respond, when to respond...oh my. It's a wonder we are able to have functional, healthy relationships, especially since we often don't even bother to do all that work. Instead, we react in the heat of the moment, while those emotions are washing over us, before we give ourselves a chance to process the situation.

This means that sometimes our decisions in the moment, after a lot of reflection, are not the ones we would have made if we'd had the opportunity to reflect first. Conversations and in-the-moment interactions rarely allow for any pause and consideration of all the potential consequences to a spur-of-the-moment response.

We've all had to deal with the fall-out of a hastily murmured acquiescence, where we have felt pressured to respond immediately and in the way the other person is pushing. Salesmen are good at that--putting pressure on us. So are a lot of people in our lives--if they are extremely motivated to get a particular response, we're going to have a harder time fending them off and sticking to our resolutions.

One way we deal with people we know are high-pressure is to work out ahead what our positions are so that when we are put to the test we can keep saying no to someone else's demands, especially when those demands are counter to our own beliefs.

It isn't easy. And often the stakes are high. Peer pressure works because our ideas about ourselves are often tied into what others think of us. Arming our children with the tools to figure out their own emotional states, their own priorities and principles and then helping them learn how to navigate peer pressure, salesmen, con-men and others who would pressure them into doing things they'd really rather not do--well, that's asking a lot, especially if we haven't quite figured that all out.

Emotional chaos, to say the least.

We've also got to show our children how we handle the fall-out when we fail to withstand the pressure. We've got to show them that it's okay to amend what they've said if it doesn't match their principles. We've got to create a system that lets us be confrontational in a non-aggressive way to go back to those who've pressured us into doing something we feel is not in our or anyone's best interests and change our response to one that is in line with cool, rational reflection of the situation.

None of these things is easy to do for ourselves, let alone helping our children learn how to do them. It's why our relationships are often rocky, and why so many of them simply don't work out. Both parties have to be willing to forgive and let go of preconceived notions. Compromise so that everyone wins and no one loses...easier said than done, and some times, it's simply not possible. Someone is going to lose in some situations. And sometimes, it's both sides.

Erich Segal may have immortalized the idea that love means never having to say one is sorry, but those of us in long-term relationships know that love means owning our errors and making amends to those we care about and, if we truly care, not continuing to make the same mistakes repeatedly.

Part of that is learning when to recognize someone isn't really reciprocating. And that, that is often the hardest thing of all to figure out--how to tell if someone is genuine or not. If we get it wrong, in either direction, someone's going to be hurt, and sometimes, everyone is going to be. In that situation, figuring out how to handle it with the least amount of collateral damage is key.

I can't help but wonder at the incredible optimism that most people embody. We know we're going to screw up. We know the people we care about are going to screw up. And yet, almost all of us are willing to keep trying, keep risking, and keep believing, despite all the times things just don't quite work out. That is, my friends, faith.

1/11/2013

Random Pictures

Mabel
Jack
Lucy
Dude
Sweet Danny Boy







As happy as they make me...as much as I love them...
Still missing my Aphrodite, Frankie, and Ibit.