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.”