Throwback Tuesday via Diplomatic Immunity

Madison and McKenzie Archibald, (our two beloved cousins) Alex, Logan and Spencer hanging at the park. Utah 2004

Throw back Tuesday??? Well, when you have a son…nay TWO sons with autism, they give you a card (similar to a diplomatic immunity card) that allows you to say, “I’m doing throw back Tuesday INSTEAD of throwback Thursday" because today was a hard day and Alex may have slammed a few doors at Costco (which is impressive since there aren’t any doors to speak of at Costco) and yelled at the shocked bystanders to “Stop looking at him like he was a circus freak!!!!”  (and even in my shame I wanted to soften the blow by saying, “The proper term in performer!! He’s an artist for heaven sakes! Give him some breathing room! No autographs please. Sir! Control yourself!”)  So, I’m using the card today, using it because I stumbled onto this piece of writing last night (in between circus act rehearsals) and I tripped across the words; I wrote it when Alex was ten and was shocked to realize we were equal parts pre-autism diagnosis and post. Now, we are almost 2/3 post diagnosis to 1/3 pre (and still, somehow, breathing…from a fetal ball of course but the air is moist down here…it’s like being in Florida). We are still circus freaks (except I never get to wear a sweet tutu or fly on the trapeze) but my lion taming act is NOT to be missed!!

Alex is EXCITED for his last day of kindergarten, that smile is even genuine! Yuma, Arizona 2004

 

2009

It's amazing to me how seamlessly your life becomes your life. How one day it will seem absolutely ordinary to have a son with autism, and how because of that one, tiny fissure, your life has shifted, platonic plates realigned and the way you are; the way you do things, is irrevocably changed. For instance, when I go shopping for clothes for Alex, I don't buy striped shirts because he finds them visually over stimulating. That's right, I just pass right by them at the GAP even though they are 60%off, because I know they will just sit in the bottom of his drawer until I try to bribe him to wear one for the Fourth of July and I even think I've got him going along with it (red and white stripes to match his brothers?!! Wahoo!) until he shows up in the van without a shirt on. So, now, almost without sighing, I just walk right past and go to the solid Polo's instead, the ones that are 30% off, but when I feel the texture, I know I need to move on to the soft cotton T-shirts, which aren't on sale at all.

Alex, Logan and Spencer at the Dolphin Habitat in Las Vegas, 2004

 

How seamlessly I seem to go about my day now. How effortlessly I soothe him in the morning. I've learned not to get him riled up in conversation over some important issue, like whether a killer whale's dorsal fin always goes limp in captivity and I'm quick to redirect his brothers when they start discussing a risky topic, like the hours the Grand Canyon is opened, because I know if he's in a bad mood at home, it will follow him all through the day, because who wouldn't be in a bad mood if someone said the Grand Canyon was open from 9:00 to 5:00 and you knew it was 8:00 to 6:00, that is enough to throw anyone into a tizzy! And see, the thing with Alex and autism is the anger, the frustration, the anxiety seems to follow him like a dark shadow and by noon the phone will be ringing, and of course it will be the psychologist from school saying Alex is having a rough time. And I'll entertain the idea again of having a secret code, a sign of some sort to flash to the teacher in the morning so she'll know his mental status, thumbs up is too easy, it has to be more intricate (shoulder shoulder, nose ear?) but how can a quick sign convey the wealth of information you need to help others understand your boy? How can you let them know about every trigger he possesses, every possible land mine with hand gestures? No, that will never work. It's best if I just keep him calm. So I've altered the way I do things in the morning, I give him cereal in the lazy boy chair, (even though I swore I never would) I don't turn on the overhead light when I wake him up, because it's too bright and makes him squint. I lay his clothes next to him, let him ride shotgun, never make him wear a striped shirt or black shoes, or make him put his back pack on before he is standing in front of the school.

 

Alex at Chuck E. Cheese (nice shoes on the table) which is the only "park" where the slides
don't burn you in the hot Arizona heat. Summer 2004

Today, five years into autism, it would never even enter my mind to make him sit on a different stool for dinner. And I always remember to warn him at least twenty minutes before bedtime, only, of course, I say it's ten minutes (no matter how long it actually is)  because that's how old he is, and he knows his number of minutes correlates to the number of years he is. (This was all his idea)  He'll be eleven in March. I know when it's time to sleep he'll wrap his Star Wars blanket around himself like a cocoon, like he is waiting for transformation, waiting to emerge. He'll sleep two nights in a row with his pillowcases turned to the Darth Vader side, then two nights with Yoda. He likes his fan turned on high, even in the winter; he needs the white noise, it helps him forget the colors. And before he goes upstairs to continue his metamorphism, I make him hug me good night, even though it's awkward, and I say, “I love you” and I mean it. Then I say, “Now you say, 'I love you too'” and he does, rushing through the words in one tone.

 And somehow, this everyday living, with things being spun around my son carefully; to avoid ever touching him, has become second nature. I'm careful in my weaving, because confrontation is difficult for Alex, because change in routine is difficult, because fire alarms are difficult, because using a different swing at recess is difficult, because webs are sticky and intricate and spinning seems to become all I know. It's easier, you see, to create distracting designs around the issues, then it is to catch him in the web, to threaten him with punchers, and I think about how patient Charlotte was, and how it took all her strength to work, “Humble” into the design, and save Wilbur's life. You see, in being seamless, you learn to avoid things that might be overwhelming. You make sure, day after day that you give him down time and a moment to process. You make sure you are explaining things clearly, that you are keeping his routine in check. In the end, all these things just become a sum of the whole. A sum of what you have become: Just another part of the equation when you learned it wasn't just ADHD, anxiety or OCD. It was something more, something that took it all in, something like a black hole, something that swallowed the galaxy.

 

Alex and his best buddy Michael, Yuma, Arizona June 2004

Most the time, I almost forget other families aren't like this. I only remember in random moments, like when my friend comes by with her two kid's my boy's age, and they are going to a party, and I realize I've forgot what it was like to go to a party with my son, because for years now he hasn't been invited, and even when he was, I had to hover over him like a moth, with frantic wings flapping so hard the papery edges grew tattered, hover just to make sure he didn't push someone, or yell at the birthday boy, or try to open his presents and blow out the candles before the five year old whose name was on the cake even had time to make a wish. “He's jealous,” I'd tell the birthday boy’s mother, “he's jealous because he wishes he was him.”

 In truth, I don't know how everything became so ordinary, because when all of this started, I thought my life could never be ordinary again. I knew I would be trying to reinvent the wheel every time the sun rose. I thought my family would always be stuck. But time somehow greases the wheels; it moves the gummed up gears, has helped me realize I am wound a little tight,  hyper in my efforts to prevent disaster. My husband likes to say, “Joanie, let the boy be a boy” when we go places like the park or a museum and I am fidgeting, anxious, afraid to stand back and watch. The truth is, I'm afraid if I let go of control a little, I might just lose my grip.

 

Alex hanging with the polar bears at his BELOVED Sea World San Diego. July 2004
 

We've almost known Alex's has autism for as long as we didn't know he had it. We are almost split apart like two halves. Pre-autism and post. And, while it's hazy, I can still remember all those days of wondering what was wrong, of second guessing myself, of thinking the nursery teacher at church just didn't get Alex, of course he wouldn't look at her, he didn't even know her, he was just that smart. And the new teacher at preschool when she'd pulled me aside and said Alex didn't know his shapes, rendered me incensed, I knew he knew every shape, right down to the rhombus. He'd pointed them out one by one without mistake in the Sesame Street book. Who was this lady anyway?

 I thought maybe he was just distracted, like my brothers were. My pediatrician said he had ADHD. I thought we'd figured it out. But then, later, halfway through his first year in school, the kindergarten teacher became cautious when she approached me to talk. She was worried because we were friends, because I volunteered in her classroom, and made gingerbread houses for all eighteen of the kids. She was soothing in her tone; talked to me like I was a frightened animal. “I asked someone to observe Alex. I don't think he has ADHD, I don't know if its autism because he can talk, but I think something is wrong.” I went home and cried. Then took him to another therapist. She thought he had obsessive compulsive disorder and an anxiety disorder. I liked that better than autism. OCD was workable. I spent lots of time reassuring him. I read books and articles. I told my friends at playgroup he was fine, just a little anxious and rigid because he worried and I pushed away the fact that he didn't seem to play with the other kids, just near them, with the excuse that I'd taken child development and knew all about parallel play, and all the kid's did that at this age, right?

 

The boys at the dolphin observation site...Nevada 2004 (looks like a giant TV screen)

When I think of his life like two halves, I think of an orange cut in two, and how different it looks with the juice glistening from the split open cells. How, if left exposed, it grows dry; old before it's time and seems to to curve into itself, the peel trying to grow around the flesh again Then I think about how I like to peel an orange, pull it apart in segments, the pieces protected by the yellow skin so they stay softer longer; broken apart gently, slice by slice. But we, we are two halves, and even though my life before autism is much longer than Alex's, somehow, the halves seem equal, we are both split open, both exposed to the elements, both sucking in air.

But this is how it is. And most days, I guess, you just go about it, and it doesn't seem like such a big deal, it's only when I slow down and talk to him that I remember this was not the life I thought we'd have. Especially when he says something like, “The recess monitor says I can’t play with the balls anymore.” And of course I say, “Why not?”  and he says, “Because I always kick the balls, but nobody kicks them back” and I picture Alex like he's a soccer player kicking ball after ball into the empty field, hoping one will reach the goal.

 

Hangin by the flamingos...wait! is that a (gasp) striped shirt? Alex and Spencer San Diego 2004

Seamlessly means you don't feel the ridges. Seamlessly means everything merges together, like water mixing; one wave merging into another. Seamless means you can't tell where something begins and something’s ends, it just keeps going on forever without peaks to give it texture. And so, I guess, that's how it is, endless. But I confess even while I am trying to convince you that life is just as ordinary as ever, I am not truthful, because in our merging there are still seams; points of connection, unvarnished ridges, something to trip on.

 Yes, I know how it is, we've been doing this for while, so when I stumble a bit, I just think, “Stand up Joanie, try again. It's just like riding a bike. See how easy it is to brush the gravel off your knees? Climb back on, pedal, one foot chasing the other.”  And I guess as time goes on, as the time since diagnoses stretches to tower over the time before diagnosis, things will continue to get even more seamless and maybe with time, I won’t feel the rough edges, the gaps, the drops. Maybe, we will just become. I have hope that I won't wish for the before and despise the after. I have hope that autism will not bully us. I have hope we will live our lives the way we want to live our lives, that we will have a choice.

 


"CHEEEEEESE" "Okay! I said CHEEESE!" "Are you DONE?" "This shirt is itchy!" Alex at the petting zoo, Utah 2004

In truth I know we are making progress towards that goal. Already, at night when it's time for bed, Alex knows after I say I love him, what he has to do next: he wraps his arms around me, squeezes (because that’s the proper way to give a hug) and says without prompting, “I love you too.”

 

What I learned from Yoda

One Sunday afternoon I came out to find Logan had taken Boo for a walk in his Darth Vader mask,
and breathing heavy through the voice changing mask he said, "BOO!!! I am your father...." Jackson 2010
 

Last year, at the start of 2013, Logan said to me, “So I think I finally understand why they call it –you know- (he does parentheses in the air) “News Years Revolution” because you are at war with yourself; you feel this pressure to start the new year off with a bang and all that, you know, eat right, not fight with your brothers, feed the dog every day, but of course all you really want to do is watch Monster Quest on the ipad…so the part of you that is saying, “Do you want your dog to die of starvation? Come on! Step it up brother!” is at war with the part of you that is like, “Didn’t I spill some cereal on the floor this morning, and couldn’t he just eat that? New Year’s revolutions are so conflicting, aren’t they mom?”

Alex as an army dude, Spencer a Jedi knight (I believe Aniken Skywalker) and Loggy bear...his favorite Bat-a-man. 2009

It doesn’t surprise me that war was the metaphor Logan chose to illustrate his angst. It does not surprise me because I live in a world dominated by men (I don’t mean to brag…) and because it is a world dominated by men we currently own 33 nerf guns (Spencer has a collection) 11 light sabers (down from the 42 I’ve purchased) 8 air soft guns (thanks Russ…..) two small machetes, (something for the boys to cut their teeth on; a training machete of sorts, like a sippy cup only instead of a rubber valve, there’s a blade) a samurai sword, and one LARGE machete from Guatemala (thank you Shawn Tidwell).  Additionally, having three sons and four brothers means I have never watched an episode of “My Little Pony,” but can still sing the “Thundercats” theme song verbatim. The only girl show I indulged in, “Anne of Green Gables” my brother’s used to refer to as, “Anne of Green Gay Balls” “Mom!!!! Will you tell Joanie to turn off her stupid “GAY BALLS” because the game is on and the guys wanna watch it!!!” Because I live in a world of boys I have had to replace not one but three ceiling fans (if you are missing the connection here you obviously live in a magical land of talking ponies and fairy dust, a world I sometimes drool over) two light saber incidents, and one Spencer-tying-himself-to-the-ceiling-fan-with-his-belt-so-he-could-fly-like-buzz-lightyear-incident. Yes, I have watched Star Wars in it’s entirety 898 times (often with a young Jedi warrior snuggle up against me…sigh…) therefore I know intimately the scene where Luke is trying to get his X-wing unstuck from the Dagobah swamp as Yoda looks on. Luke tries to use his mad jedi mind skills to raise the stuck vessel, but frustrated at his lack of progress, he gives up. Yoda, ever the wise teacher admonishes him, saying,

“Always with you it cannot be done. Hear you nothing that I say? You must unlearn what you have learned”

“All right I will give it a try” Luke says half heartedly.

“No! Try not! Do or do not, there is no try.”

The Internet is filled with motivational speakers on the subject of “Trying and Doing’ Michael Hyatt says we should:

 

Spencer after playing the entire football game in pounding freezing rain said,
"My fingers are frozen, I can't bend them enough to catch the ball." Jackson 2010

“Eliminate the word try from your vocabulary. It is a worthless word that accomplishes nothing. It only makes you feel better when you fail. Decide either to do or not to do. If you don’t want to do something fine. Don’t do it. But don’t pretend that trying is the same as doing. They are two completely different postures. Commit 100 percent to the outcome you want like the project manager in Apollo 13 said “Failure is not an option” play full out. Go for the win. Don’t settle for merely trying.”

Or another favorite from the play ground of life, “Winners do, while losers try.”

I’ve got to be honest, I struggle with this concept; that the word “try” should be eliminated from our vocabulary. I struggle because unlike my boys with their black and white thinking (or maybe because of my boys and their black and white thinking) I see life tinted in hues of color. I see the world in smoky possibilities, hazy with wafting layers of gray; a 1950’s television sunrise. I don’t see life linearly, measured in absolutes, I see the soft pink of yearning for more, the blue of try again, and the hot lemon yellow of so close. To me life sliced by a mandolin, diced into bite size chunks of achievement or failure, just splits apart the cake before all the ingredients are added, the cake baked, and the frosting spread. If you only took a bite of flour, baking soda and cocoa, you would choke on the pasty concoction and deem it unfit for consumption. Similarly, achievement most be taken horizontally, big picture, as a whole. Michael Hyatt, would say, “You make the basket or you don’t: black or white.” But what did Michael Jordan say? “I’ve missed more than 9000 shots in my career. I’ve lost almost 300 games. 26 times I’ve been trusted to take the game winning shot and missed. I’ve failed over and over and over again in my life. And that is why I succeed.”  

Logan at the Special Olympics, rocking it like a rock star! 5 gold metals! January 2010

Try is a verb. It shows action. Trying to me, is a gap filler, it’s the link that bridges the chasm of space between the desire to do something and the actual fulfillment of that goal.  Now, to be clear, I’m not talking about when you are hit up to sale Amway, and you tell your enthusiastic friend, “I will try to look at the pamphlet” knowing full well you’re going to throw it out in the first trash can you see. Or, saying to yourself between bites, “I will try not to eat the entire chocolate cake,” on day 26 of your cycle,  your nose growing like Pinocchio even while you voice the thought, because you know you aren’t going to try… you fully plan on pressing the last precious crumbs to the bottom of your fork, and licking the frosting off the corners of the pan.

I’m talking about the times when you make sincere and intense effort. When you take Tony Robbins message to heart, when you channel Yoda, when you paint yourself in camo and tatoo “be all you can be” on your soul and fail anyway; the khaki smudges wiped off in wide swaths on the Kleenexes crumpled wet with your tears.



So clean and neat before the game...Spencer...I may swoon! Jackson 2010

Life is filled with unfulfilled dreams, broken promises and disappointments. For me parenting, especially parenting autistic children, is filled with moment after moment of “playing full out” only to look at the score board and realize I haven’t even made it to the first down and that the game was called a long time ago. In a world of quantitative feedback, in a world of A + B = C, parenting a child where I know A + B = X (and can’t remember enough 8^th grade algebra to even come up with a good enough mathematical equation to find X) means I am a LOUSY jedi master. I’m not even a padawon. There is no midi-chlorain in my blood. I can say all that I want that there is no try,  announce, “Ok Alex, we are going to sit through this fire alarm and conquer this fear!” I can put on my game face, wrap my wrists in white tape, heavily grease the undersides of my eyes, I can be ready to play but despite my desire for achievement; the red hot thirst to do, the only thing that will happen is do not. I can say each morning, “You will tie your shoes by yourself today. We are doing this.” But I know his fine motor skills are as rusty as the tin man stuck in a garden of self imposed paralysis when Dorothy first finds him in Oz.

Do or Do not! There is no try.

The first "Golden" metal awarded to Loggy Bear! Jackson 2010

 

To me, the danger with this thinking pattern (and believe me, I know) is that defeat has a way of tripping you up. It has a way of whispering, ‘Why are you putting on your jersey? Don’t you know the odds are 5,000,000 to one against you winning? Don’t you know the other players don’t want you on their team? Not to mention you washed your football pants with a red sock and now they are pink, the color of shame?” Being at war with yourself, as Logan put it, is the predictable fall out when the “Do not” outcome is (ding ding ding!!!) a consistent winner.  It is my New Years revolution to be kinder to myself for the times that despite my best efforts to do, I do not. I have resolved to wave a white flag more often, to surrender to defeat, to recognize there are some things I cannot change; and be okay anyway. I am hoping to make peace with the part of me that yearns to obliterate obstacles, that wants to tackle life and hold it thrashing until it cries uncle, but to accept patience instead, to learn to breath out; to recognize some things are worth waiting for, to understand the spirit endures.

Loggy Bear accepting the gold! He said, "the podium is a little wobbly, and how do you think
they would they feel if their gold medalist athlete broke his foot when he fell?"

 To me, trying when all you want to do is quit is the bravest thing there is. When I watch Alex awkwardly fumble with his laces, loop the rabbit ears with arthritic effort, bend those rigid fingers and try to push the noodles laces through the noose; and fail to execute the task, time and time again. When I watch him instead tuck the strings into the sides of his shoes so he doesn’t have to ask an adult for help; a coping mechanism he developed all on his own to keep him from tripping. When I watch him go out the door to face another day of do not anyway, I want to cheer, I want to pound my feet on the bleachers, I want to stand up and start the wave, I want to feel the vibration of the stadium echo in my soul, and remember how it feels to see someone both accept and ignore defeat; to leave it whimpering in the corner.

To me trying is equated with faith, it’s intertwined with hope, it’s recognizing that excellence must be pursued, must not be given up on. Faith is what propelled Peter out of the boat, to stand on the broken waves, unscathed, while fear, faiths evil twin, is what pushed Peter down, left him sputtering and crying out, “Lord save me.”

Alex waiting in line for the ski lift with his instructor, Jackson 2009

Being at war with yourself, as Logan put it, (indulging in fear, is how I would put it) is the worst thing you can do. I prefer to think battles are won incrementally. The great coach Vince Lombardi said, “Truth is knowing your character is shaped by your everyday choices.” And “Winning is not everything, but making the effort to win is.”  I’ve learned the good you do persists and carries on, is heard in the echos. I know effort is seen, remembered and recovered. Incremental progress is still progress and all setbacks (despite everything and everyone who tells you otherwise) are temporary.

I equate trying with bravery. To me, trying (especially after you’ve experienced a carpet pull, especially after you’ve looked heartache in the eye and loved again anyway) means you are willing to expose your fragile heart, be vulnerable again, risk another carpet pull.

Some time ago, Alex was selected to compete in the Special Olympics. There was some discussion as to if he qualified because his IQ was so high. But then they saw his awkward attempts at balancing and decided to let him compete after all. I remember driving to his first race, the desire to speed because I was late was tempered with the need to be cautious since the roads were covered in a thick sheet of ice. Life felt heavy; the weight of duress clung like sluggish iron in my veins. Winter mornings of scrounging for missing gloves and haphazardly throwing wet boots into the dryer to predictably clunk like a metronome while I urged the boys to eat their cereal faster, had worn me out. Doctor appointments, IEP meetings, redirection, occupational therapy, speech therapy, juggling work schedules, car repairs, the to do list seemed like the never done list and ran at a break neck speed through my brain while I carefully navigated my way to Pinedale.

Alex on the way up the mountain Jackson Hole Ski Resort, February 2009

I had never been to a Special Olympics before, and I confess, a part of me was processing what exactly it felt like to have a child in the Special Olympics. I trudged through the snow, wishing I’d brought better boots, wishing I’d worn my snow pants, wishing I was ever prepared for the elements. The first event I came upon, was for beginning skiers. Parents and volunteers lined up to form a human barricade on either side of the ten yard, leveled run. Slowly, hesitantly, I watched the first skier slide into place. The coach pushed the stop watch, “Go!” He shouted. I couldn’t tell if she even moved. Awkwardly, after a few moments of looking around, she pushed one ski forward, then teetered and fell down, snow caught in the crevice of her neck. Someone helped her stand back up, steadied her, then she pushed the other foot forward, and fell down again. She got up, wiped the snow from her cheek, and pushed the other foot forward, and so it went, an agonizing pattern, her moving one foot, falling down, getting up, moving the other foot… the whole time she worked, fell to her knees, shook the powder from her goggles, tried to regain balance, refocused on the finish line… the stop watch kept ticking, the spectators cheered wildly, until finally, finally! With a smile that split me wide open, she crossed the finish line and I burst into tears. I cried and not the sweet, dab at the sides of your eyes cry, I bawled. I swiped at my face with the back of my sleeves, wiped my nose on my glove, and was still heaving with emotion when Alex gingerly approached from a ski run he’d just finished. “What’s the matter mom?’ He asked, “She didn’t give up.” I said, swiping at my eyes again. “Oh.” Alex responded, “Can you help me take my boots off? The buckles are kind of tricky.”

Alex at the clinic...toboggan ride down the mountain...torn MCL. Try again in 6 months.... 2009

 Yoda, you are our favorite Jedi master. We have more green light sabers than any other color, but…

Try, there is.

Jedi's like sugar cookies...duh! Spencer, Colter Elementary, October 2009