Barnmaven

Symbolically speaking

 

Today is World Autism Awareness Day.  Did you know that? (Rhetorical question, and since probably 90% of my two readers have kids on the spectrum very likely a silly question as well.  Whatever.)

I tend to keep myself at arm's length (or better) from groups that seem to have mastered the art of "fundraising for autism by telling everyone how awful it is" or who tend to exclude people living successfully with autism from their advocacy activities.  I'm not an advocate of focusing on the more difficult aspects of autism in order to garner financial support and while symbolic gestures are nice, they aren't as helpful as we all wish they could be.  Trust me, if I thought festooning this blog with puzzle pieces and pink ribbons and equal signs could change the things in this world I think need changing, I'd do it in a heartbeat.  You wouldn't be able to read my words through all the bling.  

I posted a cute Meme that Autism with a side of fries put up on Facebook this morning.  It read simply, "April is Autism Awareness Month.  Or as I like to call it, every single day in this house."

Except that it isn't even that for me -- autism is such a constant part of our life that I don't even think of the word as it relates to us that often.  Sometimes its a happy face thing, sometimes not so much.  I see my son as a person, not as a diagnosis.  The strategies for supporting him are modeled around his diagnosis, but the way I love him is modeled around him.

The public as a whole is far more aware of autism than ever before.  That "1 in 88" statistic that came out last year was a rude awakening for all of us, but it shouldn't have been that much of a surprise.  Autism is far more prevalent than we want to accept.  Sure, I'd like to know why that is, we all would.  As my son's parent I want to know more about how to create a world that he can live in fully than about how or why he was born the way he is.  

I'm not trying to piss in anybody's Cheerios.  A lot of very good people put a lot of effort in to the events and articles and graphics that mark World Autism Awareness Day and Autism Awareness Month.   I think I'm just tired and jaded.  I'm tired of symbolic activism.  Pink ribbons don't cure breast cancer, Red ribbons don't cure AIDS and blue avatars don't cure autism.  They don't ensure my son is less challenged today than he was yesterday and they don't change his diagnosis.  They didn't keep my friend from dying of cancer or my brother from presumably dying of heart disease.  They won't prevent another person from getting autism or breast cancer or leukemia or AIDS.  Symbols are the things we wear to tell others we are on their side, and that's a nice thing to do.  Symbols are also things manufacturers put on things because they know it will make us more likely to buy them.  

Symbols are NOT a substitute for writing letters or making phone calls to your legislators in support of marriage equality, or writing a check directly to help fund a study on autism or cancer or any number of important issues.  There aren't enough symbols in the world for me to express how badly I want to just wrap my arms around every sick, tired, lost, hurting person and tell them I love them and I wish I knew how to make it better.  Symbols are not a subsitute for being an active, involved parent for my son.   So you won't see me "lighting it up blue" today, or any other day, unless I happen to do so by accident.

That doesn't mean I don't want to have research on the causes of autism or the best ways to treat autism in children and adults.  I do.  I'm just...tired of the hoopla that doesn't seem to change much of anything.

Or maybe just a curmudgeon.  

 

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Autism Awareness, So What?

B-WEAR: We're just getting started.

Waiter, There's a Horse in my Lasagna

Photo Credit:  Suzanne Plunkett/Reuters 

SG and I were chatting a little about the big scandal happening over in Europe, where it appears food manufacturing plants in Ireland and the UK have been adding horsemeat to products which are supposed to contain beef or pork.  Horse DNA has been showing up in testing on supposed beef and pork products both on the shelf and in restaurants across Europe.  Burger King, Tesco, Aldi, Nestle’, Birds Eye and Sodexo, among other, have all been impacted by the fraud. 

Some officials have raised health concerns about whether the horsemeat could contain phenylbutazone (Bute), a commonly used equine pain reliever that isn’t approved for human consumptions.  Others suggest there is a risk to consumers from Equine Infectious Anemia, which in and of itself isn’t dangerous to humans, but according to officials might be indicative of other health issues with the animal and point to poor sanitation and handling at the factory, which could indicate the presence of other, worse contaminants.  Personally, I think these impacts would be negligible at best, since it would impossible for Bute to be present in concentrated in a horse in large enough amounts to actually cause harm to a person.  Now the sanitation issue could be plausible threat, since a factory that is slipping horsemeat into their beef and pork products could conceivably be cutting costs by skimping on their plant sanitation or faking test results as well.  Still, no outbreaks have been reported (yet) of infectious diseases being transmitted by the affected products.

Aside from the visceral reaction of “OMIGOD WE DON’T EAT HORSES, THAT’S GROSS,” I think the bigger issue is how the prepackaged food industry either directly or indirectly manages to blur the lines of information about where our food comes from and what it is composed of.  We’re not made to eat all these chemical additives and highly processed foods.  We aren’t mean to have a bigt helping of gluten or corn filler in our staple products.  We aren’t meant to eat bread that can be squished down to a nugget the size of an eraser and has been processed to the point that you need extra helpings of fiber just to get it to pass through your intestines. 

When most of our food is produced by subsidiaries of giant corporations much becomes invisible to the consumer, unless the consumer is willing to spend a lot of time researching who owns who and who produces what.  Boycotting anything on principle these days pretty much means you just can’t shop anymore. Anyhwere.  A couple of months ago when some companies which I’d always assumed were just great little producers of organic foods showed up on a list of companies opposing a measure in California to identify GMO products on food labels.  Turns out those companies were subsidiaries of larger corporations which had a vested interest in hiding the origins of many of their food products. 

The horsemeat scandal is just the current frosting on the cupcake of how the giant business of producing all of our food in factories is for the most part pretty bad for our health and probably our planet, but so long as its good for the company bottom line, who gives a shit?

I personally would be horrified if I found out something I ate contained undisclosed horsemeat; but I’m realistic enough to know anything at all that I eat that was packaged in a big giant factory somewhere possibly – probably? – contains things that are even more objectionable than THAT.   And I probably think it tastes AWESOME too, because big companies are very good at taking advantage of the sense of taste that when we were still wandering around the forest in loincloths led us to eat the foods that were good for us and avoid those that would kill us. 

In our house we are always talking about food and about eating healthier.  SG’s doctor wants him to eat paleo; my personal food style is to try and eat more green things, more whole things and fewer processed things, but that sweet tooth of mine keeps tripping up on the Ho Ho’s.  I’m not a Whole Foods hipster, by any means.  I think it’s a shame that the foods that are pesticide and antibiotic free are also way more expensive and that most people can’t afford to buy them.  But for fuck’s sake, if we’re going to manufacture a situation where a large portion of the population can’t access fresh food, could we at least make the stuff they can afford less toxic for them?

If nothing else, the situation in Europe is just that much more incentive to buy things locally as much as possible and to always always read labels.   And if you go to London, DON’T GET A WHOPPER AT BURGER KING.  Gross.

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Sweden brings in police as horsemeat scandal spreads

Girl things

My left shoulder hurts.  It has for years, but not like it has lately.  Lately whenever I try to put my arm up over my head, do pushups, carry hay or saddle my horse it really really hurts.  I went to see the shoulder guy at the Orthopaedic clinic, and he gave me a shot of steroids but that only worked for a little while, so I was back there this morning.  He wants to rule out a small tear in the rotator cuff before he puts me in physical therapy, so they're scheduling an MRI. 

I'm so excited.

I've never had an MRI.  And what if I have to have surgery?  Another scar to show off!  Cool!

Yes, I'm that person.

I'm the person who sees snow falling and I might pretend to be annoyed, because that's apparently what you're supposed to feel when it snows.  Inside, though, I can't wait for the adventure of driving in it.  There might even be an accident!  I might end up stranded in the wilderness and have to hike through the mountains and eat my companions to survive!

I'm the person who gets a scrape or a cut and the only reason I go looking for a bandage is so I can walk by my husband and kids and say "LOOK!  I'M BLEEDING!"  If the cut isn't bleeding enough I'll probably squeeze it a little to see if I can get more out of it.

I'm the person who hates needles and gets tattoos.  "How many hours did that one take?"  "Four two hour appointments."  "Didn't it hurt"  "Oh, yeah, it hurt like hell.  It was awesome."  And when I'm under the needle and the artist asks if  I need a break and I say that I'm fine and they respond with "Wow, most people would have had to take at least a couple of breaks by now," I'm all "FUCK YEAH."

I'm the woman who will smack a volleyball into the face of the guy on the other side of the net with barely concealed glee, run over the shortstop on my way to second base and barrel through the guy trying to set a pick on me when I'm guarding the guy who's driving the baseline.

I put on my coveralls and a baseball cap, put my truck up on ramps and change my oil, change my filters, refill my washer fluid and try to see if that pesky leak is just a loose bolt that I can fix myself.  I look like a greasemonkey, and I could care less.

And this may sound crazy, but at the same time I like that I can put on a fancy dress and get my hair and makeup all just so and knock my husband's socks off with my awesome female self.  I very much like my femininity and all that it entails.

I'm not alone in this.  So many women I know are just like me, strong and soft.  Tough and tender.  My daughter is one of them.

Pink, bright hot pink, is her favorite color.  She loves My Little Pony and Dragons, stuffed kitty toys and light sabers.  She wants to be a princess and a ninja. She has beautiful hair to her waist and she prefers jeans to dresses.  She came to me on Christmas day to talk about how upset she was when some relatives and friends gave her brother "boy" toys and gave her "girl" things like body wash and perfume.  She was upset to think anyone might think that she was a "girly girl." 

There is so much to love about being a woman.  While its a sure bet that my childhood in the late 60's/early 70's subjected my psyche to a great deal of gender role absolutes, I enjoy wearing makeup and dressing in clothes meant to showcase what I think is attractive about myself.  I care about how my hair looks, and I struggle like many women about the impossible-to-walk line between having fingernails that are neat and pretty or fingernails that allow you to do things like cinch a saddle, throw hay bales and repair fencing. 

In 1983, the year I graduated high school, 95 percent of autobody repair workers were male.  There must have been something brewing in us and the classes of women that followed.   As of a decade ago, the number of women in that industry tripled -- a 369% increase.  Other typically male-dominated industries have seen similar jumps in female workers - firefighting, millwork, engineering and law enforcement, to name a few. ¹  I've been a lot of things in my work life, but the bulk of it I've spent in transportation. 

I might have grown up watching Charlie's Angels, but I think I still understood at a very deep level that those women were still playing to male sexuality and that they represented very little that was real.  Anyone with half a brain knows that television and movies tell you lots of lies about how people look and what they say and do.

So when Amazon Girl complained about some of her gifts, I told my daughter that people weren't trying to be unkind if they bought her "girly girl" presents.  I told her even though she might not be a perfume and flowers kind of young lady that it wasn't demeaning for people to think of her as feminine.  Besides, isn't a gift is more of a reflection of the giver than of the receiver?.  But I get it, as might any woman who in the hormone hell of early puberty was mistaken more than once for a boy.  But I want her to know - to believe - that she doesn't have to be one or the other.  Both aspects of her exist together and there's nothing wrong with that.  There's nothing wrong about being a woman who can both take care of herself and look good doing it.

The dividing line between two worlds that were once very separate has become thin and transparent.  We may be very different physically, we may in large part have critically different ways of thinking and organizing our lives, but in so many ways we have broken free of the gender roles that at one time were used to contain and limit us.  I think thats a good thing for all of us, men included.

So hey, do you want to arm wrestle?

 

^{1.  Bureau of Labor Statistics 2005 Current Population Survey}

 

Thanks Blogher for featuring this post on Blogher.com!

 

 

You're Beautiful. No, Really.

Jane Devin wrote another great thought-provoking blog post yesterday about beauty.  I'm a huge fan of Jane's writing.  Her book Elephant Girl was as haunting a memoir as I have ever read, but her use of language as an art form makes it impossible not to read her, even when what she's written about is ugly and painful.

So anyway, beauty.  Jane writes, "We’re never going to make it okay to not be physically beautiful if we don’t get off this beauty kick we’ve been on for so long. We’re not going to change our futures and those of other women as long as “beautiful” remains a priority. We’re not going to change the culture that places such an inordinately high premium on female attractiveness as long we keep promoting beauty myths through the lies we tell ourselves and each other."

  I posted on her FB wall that I wasn't sure I agreed, and I mentioned my now-deceased friend Peg, who was morbidly obese and losing her hair thanks to Rheumatoid Arthritis and a cupboard filled with medications both toxic and ill-suited toward maintaining one's weight and hair volume.   Whenever I saw Peg, or when I think of her now in my mind's eye, I see beauty.  I see large brown eyes with impossibly long lashes and I hear the softest, most soothing voice imaginable.  I hear her tinkling laughter as she regales me with yet another story about her Boston catholic family. 

I concede the point that we give too much emphasis and value to the concept of beauty when we try to compliment someone or try to boost their self esteem.  But I also believe we misuse the word "beautiful." The term has been warped by our media to mean an almost impossibly achievable standard of physical appearance.  And Jane isn't really talking about the people who miss this standard by some small or even medium mark, she's talking about when the whole person doesn't come close due to physical deformity or flaw and that the act of trying to make someone feel beautiful when they aren't phsyically attractive is to her a disservice.

I know Jane's opinion comes from experience and from her own sense of self, her dedication to speaking the truth as she sees and feels it.  We talked about it back and forth on Facebood a little, and to a large extent I agree with her...but there is a space between that extent and my own feelings about looks and attractiveness.

What I wish were possible was for the propensity toward shallowness to somehow disappear from the human gene pool.  Its not ever likely to happen, but I can still dream about it.  I'm raising a girl, and there's no doubt that females are held to much stricter standards than the male population.  (In general, that is, because there are certainly men and women who possess no such incremental measurements of beauty when appreciating one another or their partners. )  It starts so young, with the TV shows for tweens that have mostly very attractive and thin lead characters, and their not-so-cute and maybe-a-little-dorky and often a little fat sidekicks.   Its pretty easy to decide which character you'd rather be -- and pretty easy to look at yourself and see all the reasons why you could never be her. 

It only gets worse as we get older.  Movies and television use all the tricks of makeup and lighting, props and camera position to disguise that which is unacceptable and magazines taking it a step better and photoshopping models and movie stars to the point where the real person and the picture no longer resemble one another.  And these are the people we are supposed to emulate?  How can we emulate them?  Trust me, if I could photoshop my ass for real to make it a couple sizes smaller, I would.  Well, maybe I would.

I'll never forget the really average-looking guy who came up to me in a bar when I was in my very early twenties, and said (right to my face!) "You'd be a really attractive girl if you didn't have such a big butt."  I spent every day of my life from that day forward feeling horrible about the size of my posterior.  One doesn't forget that sort of comment. 

How do we teach people to value themselves and others by non-physical standards?  How do we teach people that diversity in size and color are not marks of shame but badges of uniqueness?  How do we get human beings to learn how to give a compliment that doesn't include the words except, but, if only and however?

To address Jane's point, what about those who fall far short of the current physical standard of beauty?  Is it a disservice to seek beauty in those who feel they have none?  Do we need to know we are beautiful?  What is beauty anyway? 

And maybe that's where I see the difference in people -- my definition of "beauty" is subjective.  It isn't necessarily the same as others.  I see people as a whole picture.  I look at my husband and even though I could give you a short checklist of things about him that aren't what might be considered conventionally handsome, those aren't the things I see.  The things I see are the things that make him handsome to me -- his big smile, his broad shoulders, his warm brown eyes, and the one thing I can't see but I can hear it the moment he opens his mouth -- his intelligence and his sense of humor.  I'm NOT LOOKING for the other things.  I suppose its the same for him -- when he looks at me he sees the things he likes and discards the rest as unimportant.

I think I could look at anyone, even someone I don't particularly care for or someone who copes with a serious lack of conventional attractiveness and I could still see beauty in them.  Beauty and ugliness coexist in all of us, and they can't always be seen with the naked eye.  No human being who has ever lived is immune to the ugliness of that petty, selfish little voice in our heads, and no human exists who doesn't display physical and emotional moments of pure, unadulterated beauty. 

Childbirth -- not the prettiest sight imaginable.  And yet, that slime-covered, squalling purplish red infant with the pulsing cord still attached is beautiful in a way that cannot be described in words.  The physicality of the act of giving birth - blood, fluid, poop on the table, maybe an emergency cesaerean with intestines being pulled onto the table to get them out of the way!  There is ugliness but the spiritual and emotional experience of expelling life into the world was for me and for many women as beautiful as it was painful.

I postulate that we are all - every one of us - both beautiful and ugly.  The outside may lean far more one way than the other, but to deny the existence of beautfy at all is to deny that inside this flesh wrapper is tethered a being made up of nothing but spirit.  We are not our bodies.

Like Jane, I tend to find things other than physical appearance to compliment others on, regardless of how physically attractive they might be - or not.   But I'm going to politely, compassionately and lovingly disagree that we do service to another by refraining from letting a person know we find something about them beautiful.  Insincerity is in itself not at all useful, but a sincerely meant compliment is another thing entirely.  I compliment my daughter on her sense of humor and her strength, her sensitive and loving heart, her ability to write amazing stories and her fierce protectiveness of all things  furred and feathered.  I try to compliment her on these things more than her beauty, because I want her to always have those messages in her mind when she remembers what her mother thought of her, but she also knows I think she is stunningly beautiful. 

Jane of the amazing large eyes, I only know you from your photos on your blog and your book, but know that I do see beauty when I look at you.  We both have voices in our heads that spit out reminders of the things we know about ourselves that are the antithesis of "pretty."  Nonetheless, you have beauty that is not limited to the inner you.  Its there on the exterior as well.

 

 

Coming soon to Barnmaven.com:  My colonoscopy!  And yes, even THAT is beautiful!  I KID YOU NOT.

 

 

The Language of Special Needs

I got a text this weekend from a friend.  She is a young adult "on the spectrum," as it were, and she had somewhat of a Facebook argument with another woman over a meme the lady posted about Autism.  My friend didn't like the implication that autism is not a disability but simply a difference and made her opinion known.  She wrote about the different issues children and adults can and often do have when they have an Autism Spectrum Disorder.  She responded from her own experience, in all earnestness. In response, apparently, the original poster called her a "bitch" and wrote that autism isn't a serious issue and said people need to stop complaining about it.

I have such a depth of feeling about this.  Its an internal conflict in a lot of ways,  because technically, my daughter's bipolar and ADHD and my son's Autism and associated disorders most certainly will cause them difficulties neurotypical people don't have or ever have to think about.  On the other hand, I think both of my children are capable of doing just about anything they set their minds to, and I refuse to let them use their issues as a crutch or an excuse.  Just yesterday, my daughter remarked in passing that her brother couldn't keep himself from fighting because of his autism. 

I told her,  "I'm not sure I agree with that.  Do you think he gets to just fight with people without consequences?  I don't.  I think he has to work harder than other people to control his behavior, but he doesn't get a free pass to just behave any old way he wants to, honey."   She thought about this.  "So its just like I get in trouble for fighting with Race Car Man even though I have bipolar?" 

Exactly.

On one level, I think that a cure for autism isn't necessarily on the horizon.  And no, for the record, I don't buy into Jenny McCarthy's assertion that her son has been "cured" of autism.  I think there are a lot of therapies and treatments and foods and supplements that can help kids and adults with autism function better and more successfully, but we don't know enough yet about the causes of autism and the inner workings of the autistic brain to be able to have a cure.  Should we be funding research for a cure?  Absolutely.  But at the same time, we need to be spending our time and our dollars making sure that we give kids with autism the skills they're going to need to live as adults with autism.  We need to be cautious of the words we use around autism so that we are not being derogatory or having pejorative overtones about a community within our larger community.  People with autism don't necessarily want to hear about the ways they are different -- they are looking for the ways they can fit in.  And frankly, some of the characteristics they bear as a result of their autism are truly gifts.   

I don't think you can look at someone like Temple Grandin, whose difference in executive functioning make it possible for her to understand animal behavior in a way that most neurotypicals can't begin to understand, and think of her autism as a 'disability.' 

There are a lot of conflicting opinions in the autism community about the language that we use and the way we portray people who have autism.  A lot of advocacy groups and adults living with autism are extremely opposed to the tactics of the group Autism Speaks.  The opposition stems from a number of reasons, primarily because Autism Speaks doesn't include a large enough percentage of adults with autism in their executive leadership.  Many parents and families of people with autism and many adults with autism also take issue with the way autism is portrayed by Autism Speaks.  They feel personally denigrated by videos and messages that talk about how terrible life is for families of kids with autism, by descriptions of their more challenging behaviors and thoughts.  There are hundreds of thousands of adults with autism living successful lives, managing careers and marriages and raising children. 

There are two sides to every coin, and autism is no exception.   The divisions within the autism community are understandable, impossible to ignore, and perhaps uncrossable.   Because autism is a spectrum disorder with greatly ranging degrees of affect, everyone's experience will be different.  Because no two people react to the same stimuli in the same way, one person's response to dealing with autism and their perception of how it impacts them will vary greatly from anothers. 

I don't believe autism has ruined our lives, I just think autism has given us some challenges we might not otherwise face.  But who am I to tell a mother whose marriage has failed and whose non-verbal child is a frequent eloper or who is physically violent that she's wrong if she feels differently than I?  Just as I would want her to understand where I'm coming from, I sure as hell bet she wants me to walk a mile in her shoes, too.  I also bet that there are times she wishes someone would find a cure right this fucking minute for the behaviors that make her life incredibly difficult and stressful. 

We take issue when a mother with an autistic child kills her child and then takes her own life.  We don't want the world to think that autism is this terrible, dark thing that can't be overcome.  We, as parents, don't want anyone to look at our children and think these things about them.  We want people to see the beauty and the strengths and the uniqueness in them.  Or at least, I suppose that we do.  But I don't know what the mother whose son was denied school placement was thinking.  I can't speak for her at all.  Clearly she was overwhelmed, probably under-supported, and desperate.  The mother of the adult son with autism was said to have a very loving relationship with her son.  What were her thoughts as she committed this terrible act?  We will never know. 

Parenting a child with autism or pediatric mental illness can be hard, terribly hard.  For most of us it is NOT the end of the world.  Having autism and learning to cope with a brain that is not wired to function in the typical world can be anywhere between 'okay' and 'devastating,' depending on the individual and their place on the spectrum and the support, resources and therapies available to them.   Holding your bipolar child's needs close to your heart as you deal with them on the days they are unable to be loving or likable isn't very easy. 

We can't forget the families of the severely autistic individuals who rely on lifelong care.  As with any condition that renders a person unable to take care of their own basic needs, life becomes far more challenging and difficult, stressful and scary.  But those things don't have to mean that the person with autism and their family don't also have love and joy and wonderful times together.   The thing is, we can't deny that at least for some families, the good days are scarce and the bad days are the norm.  Some people aren't as capable of handling that as others.

Is it just too pat to say "Life is what you make it" ?  Life isn't fair, certainly.  We are all born with different abilities, strengths and weaknesses.  As humans we have the same rights, but we don't all have equal capabilities.  We must acknowledge this basic fact and work upwards from there.  My kids have stuff they've got to overcome, and sometimes that's really hard to cope with.  But cope with we must. There's more than coping, though.  We work to meet challenges and we celebrate our successes.  We learn from the bad days and we are thankful for the days that are good.  We cry, we rage, we beat our fists on the concrete, and then we get up and walk out the door with our hopes intact.  Some of us, though, throw in the towel.  Some of us don't see the up side.  Their experience doesn't invalidate my own; nor mine theirs.

Both extremes and neither. 

Can we live with that?  I don't think we have a choice.

 

 

 

With or against the current

I noticed a post while idly cruising Blogher written last week by Emily Kingsley, an autism mom who blogs at Our Holland.  Blogher featured one of her posts, a reaction in writing to an encounter with a woman who doesn't believe children with autism should be mainstreamed.  At all.  Because she believes its "not fair" to the normal kids.

The post itself had my hackles up, but reading some of the comments has got me feeling indignant as well.  Of course there were a majority of commenters who expressed their outrage at such outright ignorance.  But there were a few commenters, especially one in particular from the Facebook stream, who also believe children with autism or other disabilities don't belong  in the mainstream classroom.  "They're a distraction," said one.  "Its not fair to the other kids," said another.

I simply do not accept that these parents' children have more of a right to an appropriate learning experience than my son does simply because he has autism and they don't.

I believe that my son benefits when he is in his autism classroom AND when he is in the mainstream classroom for academics.  I also believe that the time he spends in the mainstream classroom benefits his neurotypical peers.  My belief is somewhat instinctual, but it is also an informed belief based on results and research.

Someday my son will be an independent adult.  He will need to function in a world where the majority of his coworkers and peers are neurotypical.  His time in the classroom and on the playground with his mainstream peers gives him many opportunities to learn the behaviors that make his interactions with others less frustrating and more rewarding.  The time he spends learning how to interpret social cues and how to interact appropriately with other people his age enhances his ability to succeed not just now, in school, but later in life as well.  This has been our experience, but various studies over the years on inclusion programs statistically support inclusion.  Children with autism who regularly interact in a mainstream environment (with appropriate controls and support) show marked improvements in their social skills and peer-to-peer interactions.

At the same time, spending time with other children who share many of his differences provides him an environment where he fits in.  In his other classroom he is less likely to be bullied for his autism.  He has the benefit of learning under the direction and care of teachers and other professionals who know how to help him gain better control over his behaviors.  He isn't the 'weird' kid in the class, he's one of the crowd, just another kid with autism.

I don't think my son needs to "act normal."  His autism doesn't need to be "cured," it is a part of who he is, it contributes to the many qualities that make him a wonderful and unique person.  The goal of mainstreaming him is rather to help him become adept at surviving in a world where the majority of people he encounters do not share his non-neurotypical traits.  For him to have the best chance of success in the workplace, he needs to have as much time as possible learning how to read social cues, how to regulate his behavior and emotions, how to navigate change and disruption.  These are the same skills all children, normal or differently abled, need to learn in order to be successful adults, really.

I have a firm opinion that children - all people, really - benefit greatly by learning to have compassion and empathy for others.  Very often people fear what is unfamiliar, and fear and ignorance create division and hostility.  We are not so many generations removed from a society that segregated the different and the disabled to an extreme.  Fortunately many parents, educators, medical providers and opinionated and outspoken people who are differently abled have made huge strides in gaining access to education, to the workplace and to the public consciousness.

When children have the opportunity to interact regularly with other children who are differently abled, the perception of difference diminishes.  A wheelchair becomes not something strange to stare at, its just the way your friend with CP gets around.  A text-to-speech device becomes the normal way your friend with apraxia of speech talks to you.  Kids can learn early that people's behaviors are sometimes a direct result of the way their brain processes information, and that kids who have difficulty in social situations aren't just being naughty or mean, they are having a hard time managing their reactions to stimuli or unable to understand social cues.  Kids with Tourette's aren't saying things to get attention or be disruptive, their brains are sending them signals they may not be able to control.

I'm a mom.  I love my kids and I want the best for them.  I want them to be happy and healthy people who have strong, loving relationships and who do work that satisfies them emotionally.  I want them to be productive, contributing members of our society.

Segregating children with differences only serves to create adults who don't function as well in society, who are more likely to have difficulty interacting with their coworkers or the guy who sells them groceries or the lady who collects their rent.  I don't want to see my child's potential diminished to suit the attitudes of another parent who doesn't have the first clue about what it is like to walk a mile in my son's shoes.

Just as my son ought to learn how to navigate a world that doesn't function the way his brain thinks it should, so does that other parent's child need to learn to navigate a world where not all of the poeple he interacts with will be just like him. 

 

We are autism

April is National Autism Awareness month.

Recently the dialogue around autism was shadowed by the story of a Bay area mother who killed her adult son and then killed herself.  The executive director of their local autism center said, in part, about the situation:  "...let me tell you," she said, "parents of kids with autism are under a terrific amount of stress. Many of these children don't sleep at night. They wake up at 2 or 3 in the morning, and one of the parents has to get up, because they need constant supervision. It's an exhausting experience."

Much of the commentary about the murder/suicide made much of how hard it is to parent a child with autism, how tiring and devastating it can be. 

I have a great amount of empathy for any family living with autism.  Yes, it can be tiring, frustrating, exhausting, challenging.  And there are ranges of the spectrum.  Many parents are dealing with issues like hyper-awake children who don't sleep, sensory issues, speech issues, basic personal care issues.  Some parents have children who will likely not live independently.  But autism is not a death sentence.

Living with autism is also joyous and amazing and marvelous.  Our days are full of many successes and failures, large and small. 

My son with autism is a loving, engaging, enjoyable little boy.  He is also stubborn, devious, often riddled with anxiety and easily upset by things that neurotypical people don't understand. 

My wish is that people would not excuse or over-empathize a horribly violent act by speaking about autism as if it were a valid excuse for murdering your child. I would suspect that the primary reason Elizabeth Hodgins killed her son and then herself had more to do with her own mental health issues than her son's autism. 

Having a child diagnosed with autism does not mean that your life is over.  It means that your life is going to be different, maybe more challenging in some ways but also perhaps more filled with opportunity to grow and appreciate your family's uniqueness.

 

This is the face of autism:

There now, that doesn't look so awful, does it?

 

The contest of likeability

I hate elections, particularly presidential elections.  I hate the ads, the debates, the analysis and the endless barrage of information.  What I most particularly hate is that there are only two platforms for candidates to be electable from, and the candidates that are playing for my vote have more dissimilarities to me and to many similarities to one another.

Electing a president is not about electing someone who is smart enough, strong enough, capable enough and honest enough to be entrusted with the highest office in America.  Sure, we'd like to think that it is.  But its not.  Its a contest over how many people each candidate can convince that he is more likeable than the other guy. I was watching Morning Joe's interview with Steve Schmidt, Mcain/Palin campain chief strategist.  The interview itself outlined some particularly intelligent opinions about why we choose certain people to run for office, but it was a segment header that followed that made me cringe and begin typing this post.

"Coming up next:  Candidate Y says he's starting to use the phrase y'all and that he loves Grits.  Candidate Z says he loves grits even more than Candidate Y." (paraphrased)

The ridiculousness of it -- down to the fact that news outlets are actually reporting this as news, should be a huge DOINK on the collective consciousness of us all.  Sadly, only those who actually agree with this assessment understand the importance of it, and those who don't understand it will most likely disagree with me.

Politics today are a caricature.

Races are determined by which candidate is a better liar.  They lie to make themselves more attractive to us, to convince us that they are LIKE us.  Mostly, they are not.  Candidates at the highest levels have as much in common to me as an individual as I have to a spineless mollusk.  But the most important job they will undertake while on the campaign trail is not to convince me that they are capable, not to convince me that they are trustworthy, not to convince me that they are intelligent.  Their job is only to convince me that I like them. 

Ever since Gallup ran its first presidential poll in the 1960's, we've learned that of the three main characteristics that determine who will win an election (political party, stance on the issues, likeability), LIKEABILITY is the most important.

And here's the problem:  I don't.  Like them. 

Not a single damn one of 'em.

 

Maybe Someday

My husband, as I might have mentioned before, is a capital L Libertarian.  He is consumed with the problems we face not just as a country but as a world.  He believes those problems only grow greater with a larger government that wants to mandate belief and opinion, and to him there is no difference between one side which would mandate one set of thinking and rights and the other which would mandate the opposite set of thoughts and rights.  Its all a matter of perception - and to a very large extent, I agree.  I tend to the humanistic side of things, I care about people, I care about women and children and minorities, I care about those who suffer the most under the heavy hand of poverty and discrimination and violence.  We discuss this a lot.  Even where we have laws and agencies and systems in place, we still have people who are hungry, victimized, isolated and discarded.   So we talk about ideas and beliefs and I sometimes think he lacks compassion and he often thinks I have too much of it.  But the ideas, they flow.

We like music at my house.  We are not "musicians," but we enjoy singing together and playing around on our guitars.  Over the course of twenty some years, SG has written a handful of songs.  A couple of months ago, on a day where I was off on a horse and the kids for some odd reason were remarkably quiet and occupied, he sat down and he wrote a new song. 

He couldn't wait to play it for me when I got home, and he kept playing it and refining it and toying around with it over the next several weeks, to the point where it became a permanent earworm for me.  At that point I started picking up harmonies and making suggestions.  He took his guitar to a local Libertarian phone banking event and played it for his buddies there.  One of his friends told him there was a recording studio locally that wasn't too expensive and that he should see about getting it put on disc there. 

The next thing you know, we're in the recording studio, laying tracks.  After he put down his guitar and vocals and I added harmony, the studio owner went over the whole song and added drums, bass, fiddle, mandolin, and the next thing you know we have a song.

Its not terribly professional, we know we're not *that* great or anything, but he -- WE -- are proud of it. 

So the next step of course is to put together something with images or video and upload it to share.  Except that's where I'm supposed to really get involved.

As I'm moping around the house and SG is packing for his road job, he suggests that we could get together on Skype or on the phone for a few hours a week and work together on compiling and editing said video, at which point I think I sort of went apeshit for a few minutes.  Because with him gone and the timesuck of working and commuting and kids and animals and you know, the general WTF that is my life when I'm alone, I'm going to have SO MUCH TIME  for that project.

Even so, I hope it gets completed and soon so that he can get it out there. 

So many of us end up in careers out of necessity and lack of opportunity that we might not have otherwise pursued.  Its a nice thought that America is the land where anyone can do anything if they just want it badly enough, but in the real word that's not quite true.  My husband was not built to be an I&C tech or a valve tech, he thinks and walks and talks like a writer or a professor.  He has ideas he wants to share and a passion to express them.  He has spent an unbelievableamount of time studying ideas and theories and the structure and framework of society.  Being married to him is like having a compendium of world history AND an encyclopedia in your pocket.  An innocent question can lead to a 45 minute off-the-cuff discourse which includes names, dates and other historical accuracies along with a complete dissection of the event and its repercussions down the line. 

I look at him in the throes of many such discussions and all I can think is "This man is in the entirely wrong line of work.  He needs to be doing something with this knowledge, with these ideas." 

Even if I don't fully share his vision of what our country should be like, I fully support HIM.  I think he's pretty incredible. 

Even when he leaves me trying to hold all the balls in the air for six weeks.

 

Dear Karen, a geography lesson for you. **UPDATED**

To Karen Handel and the Susan G. Komen Foundation:

Just in case you missed the basic human anatomy lesson they gave you in your junior high sex education class, here's a useful little fact about the female body:

MY BREASTS ARE NOT LOCATED IN MY UTERUS.

No, really.  Its true.  Pinky swear.

I haven't been too thrilled in the past years over the flood of pink (PINK!  OMG PINK!  BUYING PINK THINGS CURES CANCER!) and the clear contempt for consumers that the whole pink ribbon fiasco has displayed.  You trained us well.  We see a pink ribbon and our little brains automatically start processing. "Must. Buy. Pink. Spatula.  Save. Women."  How many of the advertising dollars for the damn pink ribbon actually went to fund research?  How many went to executive salaries?  How many (the bigger question, really) just went straight into the pockets of the people smart enough to stick pink shit on their products?

After more than a quarter century, no one doubts that the Komen Foundation has the most brand name recognition and political power of any of a number of charities focused on raising public awareness, providing screening and education and funding research for a cure for breast cancer.  But as time has gone by and you've grown bigger, there have been plenty of questions raised about just how much you're actually doing to cure cancer and how much you're doing to line your own pockets. 

Still, though, I've donated to friends who took part in your Race for the Cure events.  I'm not a breast cancer survivor, it doesn't run in my family, but I had my own lump scare and I take getting my annual mammograms pretty seriously.  

In 2009-10, Planned Parenthood provided almost 750,000 breast exams through its 840 health centers.  Karen, thats a LOT OF BOOBS.  Did you know that fully 14.5% of Planned Parenthood services provided were for cancer screening and prevention?  And did you know that a mere 3% of services provided by Planned Parenthood are for abortions?  Yep.  Just 3%  Planned Parenthood, in case you weren't aware, does a hell of a lot more than provide parking lots for anti-abortion protesters to carry signs and yell chants and places for pro-life wingnuts to hold shoot-a-baby-killer parties.  Planned Parenthood is seriously involved in the business of improving health, not just for women but for people everywhere.  They provide prenatal services, colonoscopies, STD screenings and treatment.  They do adoption referrals. 

I also take women's health as an overall issue pretty damn seriously.  Yesterday, you cited a federal probe (which you know damned good and well was probably politically motivated) to pull funding that provided mammogram screening from Planned Parenthood.   I'm not certain how it helps prevent or cure breast cancer by pulling funding from an organization that provides low-cost screenings to women, but there you go.  I'm sure you have a really, really good reason, because otherwise I'm sure you're getting my breasts confused with the politics surrounding my uterus.  WHICH IS NOT WHERE MY BREASTS ARE.

Picture by Lian Maris

****UPDATED 2/3/2012  The Susan G. Komen foundation announced today that it has reversed its decision on funding cuts and will continue to fund Planned Parenthood's existing grants as well as continue PP's eligibility for future grants.  Now lets everyone get back to the business of preventing and curing cancer.