When writing these little blogs, I try to stick to the amusing stuff. I mean, with all of the crap in the world (and certainly on the Internet) to make folks sad, scared, angry (even if it's righteous indignation) - why not stick to subjects that incite laughter instead?
However.
This morning, Crikey and I had a brief, yet profound, exchange (the beauty of it, naturally, is that he has no idea it was profound).
When I first heard of Steve Irwin, I was in college. Which essentially meant that I recognized the new catchphrases of "oh isn't she a BEAUTY" and "CRIKEY!" - but had neither the time nor the inclination to watch his show (or any others - didn't even watch "Friends" until around it's 3rd or 4th season). So while I found the man endearing (if insane!), he wasn't a big part of my life.
In 2006, Crikey started kindergarten. I remember being both shocked and grateful when I learned of Steve Irwin's death. Shocked, since he seemed invincible and grateful because he passed quickly and not as a result of a crocodile run-in.
When his memorial service aired, Mena and I had just sat down with some wine. At the time, neither she nor I were fans, per se, and really stumbled onto the program almost by accident. We watched because we liked him and to pay our respects. I'm not sure if Mena had any idea of how important this moment was - I certainly didn't. It really is a beautiful thing when Life hands us accidents like these.
As we watched, I remember being deeply moved - though not neccessarily by how sad everyone was at the loss. What I found so much more amazing was the fact that these people were showing their love and appreciation for the man by showing, of all things, a blooper reel. That stuck with me - that in the middle of this tragedy, there was laughter, genuine laughter. Also, that this humor didn't feel out of place at all, and I couldn't help but think that this guy must have been Something Else for this to be his memorial.
After that, watching the Croc Hunter re-runs became a nightly ritual at our home - after dinner, we'd all sit down and watch Stevo. It was great fun for us (no matter how stressful our day had been, we could lose ourselves in the energy, adventure and sheer enthusiasm of this lovable nutjob) and if the kids got something out of watching it, more the better. As neither of my boys had yet shown a real interest in live action entertainment (animation, Muppets and CGI still reigned supreme), my expectations on that front were quite low. Was I in for a shock.
Looking back, I find it interesting that within mere weeks of the service, we were referring to the man as "Steve" or "Stevo" - as though he was a person we knew (rather than a celebrity - those folks who require more specific one word names, like JimHenson, JoaquinPhoenix and IngridBergman). That Kermit, despite his inherent shyness (to say nothing of the autism) was saying "crikey!" when expressing surprise. Now that I think of it, it wasn't just Steve - the boy would talk about Terri, Bindi, Brian and Wes as though they were part of his social circle - and Mena and I fell right into that practice along with him.
It took us several months to work up the nerve to tell Crikey that Stevo had died. He's a pretty sensitive guy; I was genuinely worried that he'd be so sad about the news that he'd no longer be able to enjoy Steve's work and I didn't want to ruin that source of joy for him.
I remember how sad the little guy was - though not for the reasons I expected. Most 7 year olds, I think, would have been sad that his hero was gone or that there would be no more shows or movies to watch. Now, Crikey was aware of that - but to him, that wasn't the point. He wasn't even worried about the crocs, since "Brian-o and Wes'll take care of them". What he found heartbreaking was thinking about the folks left at Austrailia Zoo - especially Bindi (to whom he could most relate) and Bob Irwin, Steve's father, since "it's much worse for a dad to lose his son."
Every parent knows (or should know) how wonderful his/her child is. One of the perks of parenthood is the occassional glimpse of the adult that is developing from the little monkey s/he is raising. Sometimes it's how the sense of humor is developing, or what talents s/he possesses (math, baseball, art). For me, by FAR, the best part of parenthood is when I get an inkling of something beyond the gifts - when what is sensed is how the gifts are going to be used.
Crikey recently had a school project that required him to write a page on what change he wants to make in the world. At first he was stuck. So I pointed out that many people make a difference with their careers - what kind of career did he want? Still stuck - it hit me then how little he thinks of the future, being quite content in the present, thank you very much (more good advice from him!) - so....
ME: Well, would you like to be, maybe, like Stevo?
CRIKEY: (blinking in surprise) What?
ME: You could choose to work with wildlife - you love animals, and your personality is a lot like Stevo's. You'd probably like having a job like his.
CRIKEY: (eyes widening) I could be like STEVO?
ME: Sure you could.
CRIKEY: I could save animals like HIM?
I sat there, waiting for him to process that.
CRIKEY: So, if I work like Stevo, then I'll be helping the animals like he did, so even though he's gone, he's not?
While shopping for stocking stuffers, I found the Steve Irwin Memorial Tribute. I didn't really think Crikey would want to watch it - but he'd like that the money went to the Wildlife Warriors, so I bought it for him. He and I discussed what was on it, and while he liked having it, he agreed that it would be too sad to watch.
When we get up unusually early, we watch DVDs in the morning before school - usually something easy to turn off (like a concert). Today, Crikey brought me the Memorial Tribute.
CRIKEY: Could we watch this?
ME: Are you sure? It's pretty sad.
CRIKEY: Only parts, mom. The rest is happy, like Stevo likes it.
I think it's quite possible that without ever watching it, Crikey got the point of that memorial, and of course Steve Irwin, better than I did.
Tuesday, June 8, 2010
Saturday, February 27, 2010
Mommy and 'Da Cave Troll
My husband and I are huge Lord of the Rings fans. We've read the books - we downloaded sneak peek trailers for the movies (which we saw on each opening night). We brutally dissected the travesty of a trainwreck that was the "climax" of The Two Towers. We have two sets of the DVDs - the theater release and extended versions (both bought at the first possible moment).
And, as I've previously written, we have two kids... two kids who, at the time, were quite young (almost 3 years and 1 year old respectively) when the first film went to DVD.
Understandably, Marshall and I were concerned about the violence and general scariness of these movies with regard to our kids. Not that we were planning on letting the boys watch with us - we simply knew that we'd be watching them, a LOT, and if one of the boys has a nightmare, comes out to the living room for comfort, and sees some fiesty, mud covered Uruk-hai throttling a bitty little orc to death or the 800 lbs spider attacking our cute little hobbit hero - well, instead of one nightmare, now he'll have two.
So I had this brilliant idea. I would take the "making of" made for T.V. specials (where they show the actors putting on orc make up and the CGI people creating the fantasy monsters) and watch them with the boys. I'd just have it on in the background - say, on Mopping Day - and would ever so casually comment on (draw their attention to) the necessary parts of these specials. That way, though they were (obviously) still not permitted to watch the movies themselves (not that they cared at 3 and 1), they wouldn't be shocked and horrified if they were to stumble upon our viewings. (The specials in question are on Disc 2 of the theater release DVD set of Fellowship)
So far, so good. Turns out, these two specials became well loved - requested right along with Elmopalooza and Muppet Treasure Island. Here I am, thinking I've hit the jackpot - something I have to watch hundreds of times - but NOT want to stick my head into the oven to avoid. I am a GENIUS.
This takes us through to Crikey's 7th summer. Now the boys are 10 and 7 , Marshall's in Iraq - and Crikey actually has friends who've seen all THREE movies - the times, they are a-changing.
Now, I've never been one to care about peer pressure (my peers or that of my kids'). Beyond that, Crikey is a sensitive chap. He gets misty-eyed at very mild things. He is, in the very best sense of the word, a tender soul.
Before we go any furthur, I need to share a bit about Mopping Day. Kermit and I have crazy allergies. I am a neat freak who lives with a man whose own mother warned me could "make a mess in an empty room" and his offspring. These two charming lads are wonderful in many ways, and are like me in many ways. Neatness and hygiene are NOT dominant genes, apparantly. This drives me bonkers.
We have, as a family, come to an uneasy truce. I clean when they're not home - and I do not give them too hard of a time about what could easily turn into a hovel rather than a house. For their part, they pick up their crap (without complaint) when I do point it out...and Mopping Day Is Sacred. On Mopping Day:
Thou shall not walk on the floors without removing thine outer footwear.
Thou shall not eat in any of the upstairs rooms (the kitchen and dining room are upstairs).
Thou shall not disturb the upstairs in any fashion until it is time to go to bed, and even then, it is only to bathe, put on CLEAN pajamas and go to bed.
This, my friends, is Mopping Day. It is so well known, that the boys' teachers know about it. My friends schedule prospective playdates around it. Adults who visit our house are scared to come over on Mopping Day. My friends keep their phone calls short and sweet on Mopping Day because they know I'm furiously scrubbing something.
Essentially, Mopping Day is the hygienic "CTL-ALT-DEL" that restores my peace of mind on a weekly basis. As I am not mild-mannered, all who know me at least respect the value of Mopping Day as it affects their lives.
Back to LOTR. Crikey had been on me to watch it ("I'm much bigger now; I can handle it; Joey's seen it!" lalalala). No dice. 7, I thought, was still too young.
I don't really know how it happened - but I came into the living room one afternoon to find Crikey watching The Fellowship of the Ring (to this day, he claims supernatural beings found the DVD, put it in the player, sat him on the couch and forced him to watch). He was still in the Shire (the first half hour, for those who haven't seen the film).
Did I turn it off and send him to his room? Uncharacteristicly, I did not. It hit me that, as Forbidden Fruit go, the mother of eventual teenage boys has bigger fish to fry (or fruit to hide). I sat down to watch it with him. This way, we could talk through the scary parts, and I could remind him of how the special effects were created as the situation dictated.
Pursuit of the Black Riders? No problem ("mom, do you rememeber 'dat 'dey used 15 yards of material to make 'dose costumes?"). Black Riders as wispy, white ghosty looking things when Frodo puts on the Ring? Not even a sweat ("remember Peter Jackson wanted 'dem to look like 'dey've been sucking lemons for years and years?").
Mena (who had come for a visit while Doug was still gone) walks into the room, raises her eyebrows at me, understands the situation, and sits with us.
And then we get to Moria. Underground kingdom of the dwarves, deserted by them and infested with orcs. Orcs on the screen? Not too bad ("yeah mom, you're right, those are JUST ACTORS with MASKS.")
But then. The Cave Troll.
Crikey became a deer in headlights. His eyes were enormous (even more than usual) and fixated. His expression - frozen. Never before had I seen a clearer dipiction of "HO.LY.CRAP." on the child's face.
This surprised me, since the Cave Troll was in the T.V. special. Anyway. Same routine.
ME: "Are Cave Trolls real?"
CRIKEY: "no."
ME: "What did they use to make it?"
CRIKEY: "computers."
ME: "Can a Cave Troll come to the house?"
CRIKEY: "no mom"
All this time, his body didn't move, his eyes never wavered from the screen and his voice was really, REALLY quiet. Crap. He knew the right answers - but he was NOT convinced of them. I was at a complete loss and already envisioning the many nights to come...oh, it wasn't going to be pretty...poor little monkey...
However, in this darkest of moments, Mena saved the situation.
MENA: "Crikey, what would happen if a Cave Troll came to the house on Mopping Day?"
The transformation was immediate. With a jerk of his head to address his aunt, with an expression that has not been seen on a face so young and innocent since the first "WHAT'CHOO TALKIN' 'BOUT, WILLIS?!?!?!" he pronounced, yes, pronounced:
"OH. MOMMY WOULD NEVER LET A CAVE TROLL ON HER CLEAN FLOORS WIT' HIS BIG DIRTY FEET!!!!!!!!"
This realization had, he relaxed. We enjoyed the rest of the film and not one nightmare ensued.
All was well with the world. All because of Mopping Day. And Aunt Mena.
And, as I've previously written, we have two kids... two kids who, at the time, were quite young (almost 3 years and 1 year old respectively) when the first film went to DVD.
Understandably, Marshall and I were concerned about the violence and general scariness of these movies with regard to our kids. Not that we were planning on letting the boys watch with us - we simply knew that we'd be watching them, a LOT, and if one of the boys has a nightmare, comes out to the living room for comfort, and sees some fiesty, mud covered Uruk-hai throttling a bitty little orc to death or the 800 lbs spider attacking our cute little hobbit hero - well, instead of one nightmare, now he'll have two.
So I had this brilliant idea. I would take the "making of" made for T.V. specials (where they show the actors putting on orc make up and the CGI people creating the fantasy monsters) and watch them with the boys. I'd just have it on in the background - say, on Mopping Day - and would ever so casually comment on (draw their attention to) the necessary parts of these specials. That way, though they were (obviously) still not permitted to watch the movies themselves (not that they cared at 3 and 1), they wouldn't be shocked and horrified if they were to stumble upon our viewings. (The specials in question are on Disc 2 of the theater release DVD set of Fellowship)
So far, so good. Turns out, these two specials became well loved - requested right along with Elmopalooza and Muppet Treasure Island. Here I am, thinking I've hit the jackpot - something I have to watch hundreds of times - but NOT want to stick my head into the oven to avoid. I am a GENIUS.
This takes us through to Crikey's 7th summer. Now the boys are 10 and 7 , Marshall's in Iraq - and Crikey actually has friends who've seen all THREE movies - the times, they are a-changing.
Now, I've never been one to care about peer pressure (my peers or that of my kids'). Beyond that, Crikey is a sensitive chap. He gets misty-eyed at very mild things. He is, in the very best sense of the word, a tender soul.
Before we go any furthur, I need to share a bit about Mopping Day. Kermit and I have crazy allergies. I am a neat freak who lives with a man whose own mother warned me could "make a mess in an empty room" and his offspring. These two charming lads are wonderful in many ways, and are like me in many ways. Neatness and hygiene are NOT dominant genes, apparantly. This drives me bonkers.
We have, as a family, come to an uneasy truce. I clean when they're not home - and I do not give them too hard of a time about what could easily turn into a hovel rather than a house. For their part, they pick up their crap (without complaint) when I do point it out...and Mopping Day Is Sacred. On Mopping Day:
Thou shall not walk on the floors without removing thine outer footwear.
Thou shall not eat in any of the upstairs rooms (the kitchen and dining room are upstairs).
Thou shall not disturb the upstairs in any fashion until it is time to go to bed, and even then, it is only to bathe, put on CLEAN pajamas and go to bed.
This, my friends, is Mopping Day. It is so well known, that the boys' teachers know about it. My friends schedule prospective playdates around it. Adults who visit our house are scared to come over on Mopping Day. My friends keep their phone calls short and sweet on Mopping Day because they know I'm furiously scrubbing something.
Essentially, Mopping Day is the hygienic "CTL-ALT-DEL" that restores my peace of mind on a weekly basis. As I am not mild-mannered, all who know me at least respect the value of Mopping Day as it affects their lives.
Back to LOTR. Crikey had been on me to watch it ("I'm much bigger now; I can handle it; Joey's seen it!" lalalala). No dice. 7, I thought, was still too young.
I don't really know how it happened - but I came into the living room one afternoon to find Crikey watching The Fellowship of the Ring (to this day, he claims supernatural beings found the DVD, put it in the player, sat him on the couch and forced him to watch). He was still in the Shire (the first half hour, for those who haven't seen the film).
Did I turn it off and send him to his room? Uncharacteristicly, I did not. It hit me that, as Forbidden Fruit go, the mother of eventual teenage boys has bigger fish to fry (or fruit to hide). I sat down to watch it with him. This way, we could talk through the scary parts, and I could remind him of how the special effects were created as the situation dictated.
Pursuit of the Black Riders? No problem ("mom, do you rememeber 'dat 'dey used 15 yards of material to make 'dose costumes?"). Black Riders as wispy, white ghosty looking things when Frodo puts on the Ring? Not even a sweat ("remember Peter Jackson wanted 'dem to look like 'dey've been sucking lemons for years and years?").
Mena (who had come for a visit while Doug was still gone) walks into the room, raises her eyebrows at me, understands the situation, and sits with us.
And then we get to Moria. Underground kingdom of the dwarves, deserted by them and infested with orcs. Orcs on the screen? Not too bad ("yeah mom, you're right, those are JUST ACTORS with MASKS.")
But then. The Cave Troll.
Crikey became a deer in headlights. His eyes were enormous (even more than usual) and fixated. His expression - frozen. Never before had I seen a clearer dipiction of "HO.LY.CRAP." on the child's face.
This surprised me, since the Cave Troll was in the T.V. special. Anyway. Same routine.
ME: "Are Cave Trolls real?"
CRIKEY: "no."
ME: "What did they use to make it?"
CRIKEY: "computers."
ME: "Can a Cave Troll come to the house?"
CRIKEY: "no mom"
All this time, his body didn't move, his eyes never wavered from the screen and his voice was really, REALLY quiet. Crap. He knew the right answers - but he was NOT convinced of them. I was at a complete loss and already envisioning the many nights to come...oh, it wasn't going to be pretty...poor little monkey...
However, in this darkest of moments, Mena saved the situation.
MENA: "Crikey, what would happen if a Cave Troll came to the house on Mopping Day?"
The transformation was immediate. With a jerk of his head to address his aunt, with an expression that has not been seen on a face so young and innocent since the first "WHAT'CHOO TALKIN' 'BOUT, WILLIS?!?!?!" he pronounced, yes, pronounced:
"OH. MOMMY WOULD NEVER LET A CAVE TROLL ON HER CLEAN FLOORS WIT' HIS BIG DIRTY FEET!!!!!!!!"
This realization had, he relaxed. We enjoyed the rest of the film and not one nightmare ensued.
All was well with the world. All because of Mopping Day. And Aunt Mena.
Sunday, December 6, 2009
My ADD Smacks of Aspie
As I mentioned in the first blog, I have what the medical and educational professionals like to call Attention Deficit Disorder. In my experiences with Asperger’s Syndrome, I have learned that there is an excellent chance that I am actually a borderline Aspie (someone with Asperger’s Syndrome) – either that, or those with Asperger's are simply so much more evolved than the rest of humanity I am just chugging their kool-aid, and loving every gulp.
There are a few enormously destructive misconceptions out there about these (apparently VERY misunderstood) diagnoses, and where better to discuss them than on my own personal blog?
With ADD, the problems begin with the name. It is certainly appropriate to specify where our differences are – in our relationships with our attention spans.
Deficit? Please. As anyone who has ever lived or worked with ADD can attest, we do NOT lack the ability to hold our attention on a subject matter. Why, how many times have any of us heard, when speaking in reference to someone with ADD, the cry of frustration “S/HE SURE HAS AN ATTENTION SPAN WHEN IT’S SOMETHING S/HE WANTS TO DO!!!!” Speaking for myself, if I am truly engaged in an activity, I can go hours without any interruptions beyond potty breaks. AND I can maintain this focus for days/weeks on end.
So it’s not that I lack an attention span, or that it’s in any way deficient – I simply lack the ability to control where it's focused.
Now, I can understand why those without ADD can see this as a disorder. It is nothing more or less than human nature for a majority to look at the people who don’t fit in as the ones with the “disorders” – with the problems. However, human nature is also responsible for lots of other nasty behaviors – cliques, sexism, xenophobia – I say let’s not trust it.
In my first blog, I also shared that my older son has autism. Pervasive Developmental Delay (or Disorder, depending on who you ask) along the autistic spectrum. Whoa…..there’s that word again – DISORDER. Okay. I will concede that living with Kermit is not simple. There are many things we have to do differently from “normal” families (if any such family exists) – and there is little to no chance that he will ever live what mainstream America calls a “normal” life. When I first digested the diagnosis, I too was on board with our culture’s drive to “cure” autism. To teach Kermit and all the other kids like him how to overcome their “disability” so they can be happy “normal” adults.
I absolutely LOVE the line from the movie Practical Magic – in a conversation where Sandra Bullock’s character bemoans her lack of a “normal” life, her aunt swiftly retorts:
“My darling girl, when are you going to understand that being normal is not necessarily a virtue? It rather denotes a lack of courage!” (Stockard Channing, as Aunt Frances)
In the last several decades, our culture has (finally) enthusiastically embraced the notion that diversity should be revered. That we should not discriminate based on age, race, sex, etc.. So, out of morbid curiosity, who gave the get out of jail free card to all of us by letting folks believe that “normal” is good and ADD/autistic is bad?
I’d like to stop my rant for a moment. Yes, let us pause for a compassion break. Raising and living with autistic/ADD people is a lifestyle for which very VERY few people prepare. When a couple finds out they’re pregnant, their hearts and minds fast forward to Fisher Price commercials, diapers, midnight feedings, stressful vacations at Disney World, watching their babies become hopeful ballerinas and little leaguers…and watching those children hit puberty, date, dance, fall in love, go to school, get jobs (jobs like mom and dad have?), get married, have kids of their own. This is a wonderful, magical, stressful, crazy, expensive process – as primal and natural to the human condition as breathing and eating. It’s right there, in our DNA, to switch from single life gear into a life where one’s entire existence revolves around the prospect of raising this beautiful child into the best, most successful adult possible. An adult who can enter this big bad nasty world of ours and kick ass while taking names. And we're going to look damn good while doing it, too.
When this (no less beautiful) child is diagnosed with a disorder of this magnitude, (ADD is bad enough, but AUTISM??) the parents have to give up the above picture for a future that pigeonholes that amazing baby as either future hooligan or a wannabe Rainman. What rational, loving parent would NOT scream “OH. FUCK. THAT.” in the face of that kind of death sentence?
Because yes, getting the diagnosis is a kind of death sentence. That first picture is GONE. To keep one’s sanity, one has to grieve for that loss. Some parents grieve by giving up on their child and some by becoming obsessed with “curing” or “saving” their child. So far, in my travels, I have met very, very few parents whose first response to the diagnosis is to refer to it as a gift.
As a child, I was miserably awkward in social settings with my peers. I never understood, let alone enjoyed, picking on the misfit kids. I never understood (and was therefore unable to participate) in kissing up to the girls that “mattered”. The idea of smoking, drinking or having sex to gain social approval made less sense to me than algebra (which, I assure you, I only passed by the grace of God, my angelic tutor, Hassan, and my brilliant and merciful teacher, the late, great Mrs. Oswalt).
Take a moment now, and imagine how smoothly middle school went for me. (insert appropriately stifled, cynical laughter here)
As an adult, I am still every bit as socially awkward, but I have stopped being miserable about it. Why? Well, here’s the thing.
When I’m actually earning a paycheck, I do so by working with autistic children (mid to high functioning autism and Asperger’s Syndrome). This seemed a natural line of work to enter – since Kermit’s autism had given me years of on the job experience. Like folks with ADD, it is extremely difficult for autistic people to turn their (considerable) powers of concentration onto matters/activities that do not interest them. Therefore, my job as a one to one tutor is to spend my day helping my charge understand why s/he DOES want to do what’s being asked of her/him. With non-verbal students, this generally takes the form of glorified bribery/extortion. Essentially, the child does something because the teacher has made it clear that s/he will very much enjoy what happens after compliance, and will be most frustrated until that compliance occurs. Hmmm. How is this any different than regular parenting?
With the high functioning (verbal!)/Aspie crowd, it is MUCH more expedient to verbally explain the logic behind the request. Like their non-verbal comrades, this group of (usually VERY intelligent) people are willing to do almost anything – as long as they understand the logical reason behind the request being made of them.
“It is no measure of good health to be well adjusted to a sick society.” - Krishnamurti
Once it became my job to explain the whys behind most of the hoops through which all of our kids are forced to jump, I had a startling revelation. It’s amazing to me how many wacky, uncomfortable, dishonest, illogical, weird behaviors humans are willing to do just because society expects them to do it. Personally, I never ever realized how many stringently enforced social rules are completely, shamelessly useless – if not destructive – behaviors. Pretending to like (unpleasant) people just to get something from them (social acceptance, job promotion, better grades). Ignoring uncomfortable truths (when honesty would save time, money, feelings, aggravation). Pretending to like a job even when the misery that comes from sticking with it causes everything from high blood pressure and ulcers to insomnia and marital problems. Not turning in the kid in your class who’s dealing drugs because…well, hell, I still don’t know why that one even happens.
And it's the ADD/Autism community that has the disorder??
Don’t get me wrong. Teaching these children the skills they actually need to survive – absolutely necessary. But, like the Monkees’ song, Daydream Believer goes, “but how much baby, do we really need?”
To be successful human beings, we need precious little. Air, water, food, shelter, human connections and the means by which we maintain the presence of these things in our lives. Loosely translated to modern American society: a job for the money we need to provide ourselves with the first four, and enough social skills to maintain productive, positive relationships with our coworkers and friends/family. Believe it or not, but the ADD/Aspie/autistic community defines “enough” social skills and “productive, positive” relationships very differently than “normal” people do. Correspondingly, they define “success” and “happiness” along distinctly different lines. People tell me how badly they feel for me for the challenges in my life; this honestly confuses me. I look at their lives, their text book examples of success and happiness, and am deeply thankful that I don’t have to live in their worlds.
Yet still, I can relate to their pity or confusion, or whatever it is. Despite a privileged view into autism mentality, I occasionally have a hard time keeping the faith. Fortunately, Kermit is not afraid. All you have to do is meet him to know that he understands his place in the world. He knows how to be a successful human, and he will certainly do it – but in his own way and on his own terms. Who am I as his mother to thwart that? Who are we as a society to tell him (and those like him) that what gives him joy isn’t good enough? Who has the right to define happiness?
Maybe they are here to show us that there is more to life than stereotypical cookie cutter happiness. To help us become as open minded and as free thinking as we already think we are. To help us confront the dishonesty and corruption in our lives that has, hitherto, gone unchallenged.
There are a few enormously destructive misconceptions out there about these (apparently VERY misunderstood) diagnoses, and where better to discuss them than on my own personal blog?
With ADD, the problems begin with the name. It is certainly appropriate to specify where our differences are – in our relationships with our attention spans.
Deficit? Please. As anyone who has ever lived or worked with ADD can attest, we do NOT lack the ability to hold our attention on a subject matter. Why, how many times have any of us heard, when speaking in reference to someone with ADD, the cry of frustration “S/HE SURE HAS AN ATTENTION SPAN WHEN IT’S SOMETHING S/HE WANTS TO DO!!!!” Speaking for myself, if I am truly engaged in an activity, I can go hours without any interruptions beyond potty breaks. AND I can maintain this focus for days/weeks on end.
So it’s not that I lack an attention span, or that it’s in any way deficient – I simply lack the ability to control where it's focused.
Now, I can understand why those without ADD can see this as a disorder. It is nothing more or less than human nature for a majority to look at the people who don’t fit in as the ones with the “disorders” – with the problems. However, human nature is also responsible for lots of other nasty behaviors – cliques, sexism, xenophobia – I say let’s not trust it.
In my first blog, I also shared that my older son has autism. Pervasive Developmental Delay (or Disorder, depending on who you ask) along the autistic spectrum. Whoa…..there’s that word again – DISORDER. Okay. I will concede that living with Kermit is not simple. There are many things we have to do differently from “normal” families (if any such family exists) – and there is little to no chance that he will ever live what mainstream America calls a “normal” life. When I first digested the diagnosis, I too was on board with our culture’s drive to “cure” autism. To teach Kermit and all the other kids like him how to overcome their “disability” so they can be happy “normal” adults.
I absolutely LOVE the line from the movie Practical Magic – in a conversation where Sandra Bullock’s character bemoans her lack of a “normal” life, her aunt swiftly retorts:
“My darling girl, when are you going to understand that being normal is not necessarily a virtue? It rather denotes a lack of courage!” (Stockard Channing, as Aunt Frances)
In the last several decades, our culture has (finally) enthusiastically embraced the notion that diversity should be revered. That we should not discriminate based on age, race, sex, etc.. So, out of morbid curiosity, who gave the get out of jail free card to all of us by letting folks believe that “normal” is good and ADD/autistic is bad?
I’d like to stop my rant for a moment. Yes, let us pause for a compassion break. Raising and living with autistic/ADD people is a lifestyle for which very VERY few people prepare. When a couple finds out they’re pregnant, their hearts and minds fast forward to Fisher Price commercials, diapers, midnight feedings, stressful vacations at Disney World, watching their babies become hopeful ballerinas and little leaguers…and watching those children hit puberty, date, dance, fall in love, go to school, get jobs (jobs like mom and dad have?), get married, have kids of their own. This is a wonderful, magical, stressful, crazy, expensive process – as primal and natural to the human condition as breathing and eating. It’s right there, in our DNA, to switch from single life gear into a life where one’s entire existence revolves around the prospect of raising this beautiful child into the best, most successful adult possible. An adult who can enter this big bad nasty world of ours and kick ass while taking names. And we're going to look damn good while doing it, too.
When this (no less beautiful) child is diagnosed with a disorder of this magnitude, (ADD is bad enough, but AUTISM??) the parents have to give up the above picture for a future that pigeonholes that amazing baby as either future hooligan or a wannabe Rainman. What rational, loving parent would NOT scream “OH. FUCK. THAT.” in the face of that kind of death sentence?
Because yes, getting the diagnosis is a kind of death sentence. That first picture is GONE. To keep one’s sanity, one has to grieve for that loss. Some parents grieve by giving up on their child and some by becoming obsessed with “curing” or “saving” their child. So far, in my travels, I have met very, very few parents whose first response to the diagnosis is to refer to it as a gift.
As a child, I was miserably awkward in social settings with my peers. I never understood, let alone enjoyed, picking on the misfit kids. I never understood (and was therefore unable to participate) in kissing up to the girls that “mattered”. The idea of smoking, drinking or having sex to gain social approval made less sense to me than algebra (which, I assure you, I only passed by the grace of God, my angelic tutor, Hassan, and my brilliant and merciful teacher, the late, great Mrs. Oswalt).
Take a moment now, and imagine how smoothly middle school went for me. (insert appropriately stifled, cynical laughter here)
As an adult, I am still every bit as socially awkward, but I have stopped being miserable about it. Why? Well, here’s the thing.
When I’m actually earning a paycheck, I do so by working with autistic children (mid to high functioning autism and Asperger’s Syndrome). This seemed a natural line of work to enter – since Kermit’s autism had given me years of on the job experience. Like folks with ADD, it is extremely difficult for autistic people to turn their (considerable) powers of concentration onto matters/activities that do not interest them. Therefore, my job as a one to one tutor is to spend my day helping my charge understand why s/he DOES want to do what’s being asked of her/him. With non-verbal students, this generally takes the form of glorified bribery/extortion. Essentially, the child does something because the teacher has made it clear that s/he will very much enjoy what happens after compliance, and will be most frustrated until that compliance occurs. Hmmm. How is this any different than regular parenting?
With the high functioning (verbal!)/Aspie crowd, it is MUCH more expedient to verbally explain the logic behind the request. Like their non-verbal comrades, this group of (usually VERY intelligent) people are willing to do almost anything – as long as they understand the logical reason behind the request being made of them.
“It is no measure of good health to be well adjusted to a sick society.” - Krishnamurti
Once it became my job to explain the whys behind most of the hoops through which all of our kids are forced to jump, I had a startling revelation. It’s amazing to me how many wacky, uncomfortable, dishonest, illogical, weird behaviors humans are willing to do just because society expects them to do it. Personally, I never ever realized how many stringently enforced social rules are completely, shamelessly useless – if not destructive – behaviors. Pretending to like (unpleasant) people just to get something from them (social acceptance, job promotion, better grades). Ignoring uncomfortable truths (when honesty would save time, money, feelings, aggravation). Pretending to like a job even when the misery that comes from sticking with it causes everything from high blood pressure and ulcers to insomnia and marital problems. Not turning in the kid in your class who’s dealing drugs because…well, hell, I still don’t know why that one even happens.
And it's the ADD/Autism community that has the disorder??
Don’t get me wrong. Teaching these children the skills they actually need to survive – absolutely necessary. But, like the Monkees’ song, Daydream Believer goes, “but how much baby, do we really need?”
To be successful human beings, we need precious little. Air, water, food, shelter, human connections and the means by which we maintain the presence of these things in our lives. Loosely translated to modern American society: a job for the money we need to provide ourselves with the first four, and enough social skills to maintain productive, positive relationships with our coworkers and friends/family. Believe it or not, but the ADD/Aspie/autistic community defines “enough” social skills and “productive, positive” relationships very differently than “normal” people do. Correspondingly, they define “success” and “happiness” along distinctly different lines. People tell me how badly they feel for me for the challenges in my life; this honestly confuses me. I look at their lives, their text book examples of success and happiness, and am deeply thankful that I don’t have to live in their worlds.
Yet still, I can relate to their pity or confusion, or whatever it is. Despite a privileged view into autism mentality, I occasionally have a hard time keeping the faith. Fortunately, Kermit is not afraid. All you have to do is meet him to know that he understands his place in the world. He knows how to be a successful human, and he will certainly do it – but in his own way and on his own terms. Who am I as his mother to thwart that? Who are we as a society to tell him (and those like him) that what gives him joy isn’t good enough? Who has the right to define happiness?
Maybe they are here to show us that there is more to life than stereotypical cookie cutter happiness. To help us become as open minded and as free thinking as we already think we are. To help us confront the dishonesty and corruption in our lives that has, hitherto, gone unchallenged.
Wednesday, October 28, 2009
I'm Not Crazy, Just Terribly, Terribly Unique
Safe to say, the hardest part of any project is getting started. As this is my first blog post, I feel I should do some sort of introduction: who I am, a little bit about me, kind of a social resume that should give some inclination as to why this and future blogs written by me are worth reading. As a writer, I have always found it best to simply wait and think for the proper inspiration. Even during timed tests, this approach works for me.
However. There is the chance that, since I started my “thinking” over two years ago, perhaps I’m merely procrastinating. So, instead of a formal introduction, I think it would be more expedient to simply tell the story of how I finally put pen to paper.
One of the best lessons to learn in this life or any other is the accomplishment of breaking unproductive patterns. I have found, very, VERY predictably, that when Life wants me to do something, It doesn’t stop until I cry “uncle” and make with the compliance. For example, I got my college degree with a major in English and a minor in Education (considering the workload for that minor, it should be called a double major, but I digress). As I approached graduation, my aunt, a special educator approaching retirement and one of my all time favorite people, gave me some advice. “Megan, go into special education. That is where the money is, because that is where job security is. That’s where the security is because that is the branch that will not only never go away, it’s getting bigger every day and no one wants to do it.” She repeatedly said this.
To which I repeatedly replied: “You know, I just can’t. I just know that it’s beyond my abilities to work day in and day out having my heart broken by working with people that I can’t really help or make better. I just can’t do it.”
It is often said that God/Goddess, the Universe (name your main deity squeeze) has a sense of humor. I’ll meet that sense of humor and raise the addition of there being an “Oh yeah?” attitude. Word of advice: unless you’re ready for a karmic lesson, NEVER inform the universe that you “can’t” do something. Apparently, there is a Heavenly department that specifically handles such challenges and efficiently, cheerfully, BITCH SLAPS whoever is foolish enough to hurl them.
My older son likes Kermit the Frog. He will be, henceforth, known on this blog as Kermit.
Kermit is eleven years old. He has a remarkably dry, sarcastic sense of humor, an uncanny knack for psychic perception, big blue eyes that simultaneously convey the most innocent “Who me?” along with the devil’s wiseass smirk...and autism.
I name the autism last because while it’s predictably the second thing folks notice about him (the first being those gi-normous baby blues), it is probably the least remarkable thing about him. To be honest, it is really more like the frame story, the back information that ensures the rest of the tale makes sense.
You see, Life wanted me to work in special education. It gave me many gentle opportunities to work in this field (my aunt being only one of many people who tried to hook me on SPED (SPecial EDucation)). If it’s not clear already, now would be the time to point out that I have a very strong personality. I have also been frequently accused of stubbornness. After many, many assertions of being unable to do the work Life had planned for me, my file got transferred to Heaven’s Oh Yeah? Department. Also known as the OY (pronounced “oy” as in, “oy vey”) Department. When the OYs got a hold of my dossier, they decided that the only way to get my butt in this field was to send me a very cute, very intelligent, very badass little enforcer. Naturally, being Heaven, they had the perfect man for the job. When Kermit signed up – I got knocked up. So. One can look at the process, and see the progression from gentle hints, forceful suggestions, and Cosmic Smack.
I now have a healthy respect for the OY department. They, in turn, have made allowances for my ADD, sending many little hints, including, but not limited to: my sister, Mena, moving in with me (and starting her daily harangue of how I need to start blogging), getting “let go” because my boss (in SPED, no less) wanted me to get a “grown up job” and now…
Autism has lots of little quirky side effects that don’t make the made-for-TV movies. Lately, my personal favorite (said with intense sarcasm) is the disruption of sleep patterns. Unfortunately for Kermit (and ME), one of the other little quirks is his inability to be awake and quiet at the same time.
So, when we woke for the DAY today at 12:30 a.m., I was not amused. I tried to fall back asleep, but true to my ADD fueled chronic insomnia, I found myself riding on several speedboats racing through several white water rapids of consciousness (the streams are for sissies). Every once in a while, these splash courses will smack me with an epiphany or two. As fate would have it, today is one of those days. The epiphany? With regard to my writing, the OY department is getting antsy. Since daily hints and unemployment weren’t enough, I am now not allowed to sleep until I get crackin’ on my writin'.
Trust me when I say that this got my attention. The OY department does NOT play. I really do believe, in my heart of heart, in my soul of soul, that if I don’t start writing, some calamity will fall. Oh yeah, I said calamity. And true to my life, it will involve twists, irony, humor and only God knows what else. Like getting trapped in a soundproof room with limited oxygen and Nikki Sixx for company, and our only tool for escape is my computer, and the only thing that will save us (and impress one of my all time favorite writers/artists) is my ability to blog our way to safety.
Don’t scoff. There are many witnesses to the weirdness in my life. They’ll all testify that if something THAT over the top was going to happen, it would happen to ME.
On the other hand, am I now missing my opportunity to meet Nikki Sixx?
Eh. I’ll take my chances. If this works out and leads me to the means to make my millions, I’ll just invite him over for tea, crumpets and a Bones marathon. Cause that’s just how I roll.
However. There is the chance that, since I started my “thinking” over two years ago, perhaps I’m merely procrastinating. So, instead of a formal introduction, I think it would be more expedient to simply tell the story of how I finally put pen to paper.
One of the best lessons to learn in this life or any other is the accomplishment of breaking unproductive patterns. I have found, very, VERY predictably, that when Life wants me to do something, It doesn’t stop until I cry “uncle” and make with the compliance. For example, I got my college degree with a major in English and a minor in Education (considering the workload for that minor, it should be called a double major, but I digress). As I approached graduation, my aunt, a special educator approaching retirement and one of my all time favorite people, gave me some advice. “Megan, go into special education. That is where the money is, because that is where job security is. That’s where the security is because that is the branch that will not only never go away, it’s getting bigger every day and no one wants to do it.” She repeatedly said this.
To which I repeatedly replied: “You know, I just can’t. I just know that it’s beyond my abilities to work day in and day out having my heart broken by working with people that I can’t really help or make better. I just can’t do it.”
It is often said that God/Goddess, the Universe (name your main deity squeeze) has a sense of humor. I’ll meet that sense of humor and raise the addition of there being an “Oh yeah?” attitude. Word of advice: unless you’re ready for a karmic lesson, NEVER inform the universe that you “can’t” do something. Apparently, there is a Heavenly department that specifically handles such challenges and efficiently, cheerfully, BITCH SLAPS whoever is foolish enough to hurl them.
My older son likes Kermit the Frog. He will be, henceforth, known on this blog as Kermit.
Kermit is eleven years old. He has a remarkably dry, sarcastic sense of humor, an uncanny knack for psychic perception, big blue eyes that simultaneously convey the most innocent “Who me?” along with the devil’s wiseass smirk...and autism.
I name the autism last because while it’s predictably the second thing folks notice about him (the first being those gi-normous baby blues), it is probably the least remarkable thing about him. To be honest, it is really more like the frame story, the back information that ensures the rest of the tale makes sense.
You see, Life wanted me to work in special education. It gave me many gentle opportunities to work in this field (my aunt being only one of many people who tried to hook me on SPED (SPecial EDucation)). If it’s not clear already, now would be the time to point out that I have a very strong personality. I have also been frequently accused of stubbornness. After many, many assertions of being unable to do the work Life had planned for me, my file got transferred to Heaven’s Oh Yeah? Department. Also known as the OY (pronounced “oy” as in, “oy vey”) Department. When the OYs got a hold of my dossier, they decided that the only way to get my butt in this field was to send me a very cute, very intelligent, very badass little enforcer. Naturally, being Heaven, they had the perfect man for the job. When Kermit signed up – I got knocked up. So. One can look at the process, and see the progression from gentle hints, forceful suggestions, and Cosmic Smack.
I now have a healthy respect for the OY department. They, in turn, have made allowances for my ADD, sending many little hints, including, but not limited to: my sister, Mena, moving in with me (and starting her daily harangue of how I need to start blogging), getting “let go” because my boss (in SPED, no less) wanted me to get a “grown up job” and now…
Autism has lots of little quirky side effects that don’t make the made-for-TV movies. Lately, my personal favorite (said with intense sarcasm) is the disruption of sleep patterns. Unfortunately for Kermit (and ME), one of the other little quirks is his inability to be awake and quiet at the same time.
So, when we woke for the DAY today at 12:30 a.m., I was not amused. I tried to fall back asleep, but true to my ADD fueled chronic insomnia, I found myself riding on several speedboats racing through several white water rapids of consciousness (the streams are for sissies). Every once in a while, these splash courses will smack me with an epiphany or two. As fate would have it, today is one of those days. The epiphany? With regard to my writing, the OY department is getting antsy. Since daily hints and unemployment weren’t enough, I am now not allowed to sleep until I get crackin’ on my writin'.
Trust me when I say that this got my attention. The OY department does NOT play. I really do believe, in my heart of heart, in my soul of soul, that if I don’t start writing, some calamity will fall. Oh yeah, I said calamity. And true to my life, it will involve twists, irony, humor and only God knows what else. Like getting trapped in a soundproof room with limited oxygen and Nikki Sixx for company, and our only tool for escape is my computer, and the only thing that will save us (and impress one of my all time favorite writers/artists) is my ability to blog our way to safety.
Don’t scoff. There are many witnesses to the weirdness in my life. They’ll all testify that if something THAT over the top was going to happen, it would happen to ME.
On the other hand, am I now missing my opportunity to meet Nikki Sixx?
Eh. I’ll take my chances. If this works out and leads me to the means to make my millions, I’ll just invite him over for tea, crumpets and a Bones marathon. Cause that’s just how I roll.
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