We don’t manage our priorities; we have them.
What we manage is our actions.
I’m sitting at my desk learning how to make glow in the dark lemonade from Pinterest, only to be interrupted about fifty times by my son who is bouncing around all over my bed, shaking a handful of coins in an empty Tupperware. He’s playing.
It’s incredibly obnoxious, so I ask, “Why do you have to make so much noise?! Can’t you go somewhere else to make so much noise?” He scrunches his nose with a giant mischievous grin on his face and giggles. “You’re such a stink! Uh!” I say frustrated. I stick my tongue out at him playfully before turning back around and attempt to refocus on the serious business of gathering “sensory fun” activities as he continues to hop around on the bed behind me. The noise the coins make in this particular container amuses him. Tomorrow it will be a different container, a different tone but with similar amusement. As ephemeral as this activity might be, the pain staking challenges and struggles that lay behind the behavior itself are not.
Autism is a pervasive and variable developmental disorder characterized by severe deficits in social interaction and communication, by an extremely limited range of activities and interests, and often with the presence of repetitive stereotyped behaviors. It’s a condition that’s severely misapprehended; those with it too magnanimous to care. These children don’t lie, they don’t cheat, they don’t play mind games and they’re incredibly sensitive to the world around them.
Given the inordinate number of children affected, and considering the emotional, economic, and physical toll autism has on the parents who care for them and the children who struggle with it, the economic implications the U.S. faces by not recognizing such factors, such widespread indifference transcends all reason and is hard for me to comprehend why anyone would choose neither to care nor see this issue as a priority.
April 2nd: World Autism Awareness Day
So it’s “Autism Awareness Month”: an entire month of copious amounts of chattering from around the world about a topic that is quite literally my life. Blue lights and decorations, cheesy commercials, parades, and everybody who has known anybody with a neighbor who’s autistic, shares their supreme insights on the subject. It’s fairly impressive. Log on to any social networks autism community and you’ll find an array of people slamming the feeds asking the world for tolerance and understanding.
But for what?
Because you’re autistic and you want people to be nice and understanding?
Because your perspective is unique?
I’m still wiping my kid’s ass and he’s 10. Can I have some awareness for that shit? I suppose the stark realism of autism as many parents know it just might discourage any enthusiasm conjured for the causes “awareness”. Though I’m not sure why. Maybe it’s those judiciously bitter words: Nobody said life was fair. After years of parenting an autistic child, I’d like to think myself adept at one of life’s vital skills for survival; managing one’s expectations. And I don’t presume I’d lose this skill any time soon. So no harsh details, they’re nonessential.
So what’s my point?
The point I feel is grossly overlooked is that despite its appropriateness to implore the public for acceptance, for those functionally capable people out there diagnosed with autism, the reality is that recognizing and respecting differences in others and treating everyone with respect to their nature, will help make our world a better place for everyone; not just for those on the spectrum. And I’m afraid that the reason I might be having difficulties finding my place within all this “doing my part” business, is because I don’t really want to be asking the world to be aware of something that’s unfair to expect.
As much as I’d love to hold people accountable for their humanity and their altruistic capacities, I’d rather solicit rigorous excitement from the general public to learn. Think of it: a disability is usually defined in terms of what is missing. Yet autism is as much about what is abundant as it is about what’s missing; an over-expression of the very traits that make our species unique. That’s an incredible dream to give up on; and I don’t think we should sell our dreams before knowing what they cost.
While I understand there is merit to the traditional considerations and focus within the framework of autism awareness month, ignoring the opportunities woven within it would be to inevitably starve the goose; forsaking knowledge of ourselves, of who we are, and of who we’ve become, neglecting the chance to give individuals the opportunity to reassess so they can personally evolve for the betterment of themselves and for the sake of humanity.
And who have we become? Overzealous, stressed out or negligent parents, doctors and educators stuck in assiduously viscous predicaments; organizations, lawmakers and lobbyists; all of them talking at the same time. It’s no wonder people are having trouble listening in this messy circus. But of course, I really should spare the “details”; they’re nonessential to the bigger picture, the ultimate goal.
April: Autism Awareness Month
For me, autism has been an incredibly amazing and arduous adventure for the last 8 years. I’ve had so much I wanted you to know, but I haven’t had anything to say, until now. Maybe that’s because I became too saturated with silence; or saturated with knowledge. Or maybe it’s because my well of personal wisdom is overflowing: with love, with understanding, with acceptance, with humility. Or maybe it’s because of my passionate disappointments with the very organizations meant to help, seem to be burning billions of dollars whilst slamming each other’s credibility. It’s a joke. Millions of families and their children left with the choice to walk on shifting sands or to build castles in the sky. It’s a joke. And when everything is a joke, nothing is funny.
Autism is the accumulation of all that makes us human: exemplified. And that deserves our willingness to action, even if that action is to listen. I urge you to notice yourself noticing all of the commotion around you in this month of April; then ask, why?
I don’t want my voice to be drowned out by all of the commotion. And yet, I’m not sure what I should say. I suppose I could start by going into all of the different therapies there are or why they exist in the first place. I could delve into all of the offshoot subjects such as sensory issues, diet issues or the copious amounts of therapies for the condition. Maybe I can carry on about insurance dilemmas or the special education system; the pros and cons and how incredibly far it’s being stretched. And how could I forget the issue of bullying, mainstreaming, individual future planning! Or how about the oh so “insignificant” future economic ramifications with regards to the 78% increase of autism in the past decade according to the CDC just 6 months ago! I suppose I could talk about that because I’m not sure who the hell is prudently talking about it to begin with. Let’s not forget there’s always the option for me to verbally vomit whatever propaganda is fashionably in season, seeing as I’m a little busy these days mixing up glow in the dark lemonade and preparing for my kids next IEP.
I’m sorry, I’m afraid I might be stuck in some agoraphobic seizure the ocean of autism induced years ago and I’m not quite sure what to say now that I’m in the spotlight. But I do see other people trying, people are desperately trying. I see moms painting their nails in puzzle pieces. I see family photo albums exposed, draped with heart wrenching songs all over You Tube. I see dozens and dozens of people walking down town with puffy painted t-shirts with their kids name on it. And every year I begin to feel just a little more inadequate.
Because I’m fairly certain everyone knows my kid has autism. And during holidays they see that I like arts and crafts; I also enjoy baking. And so I’m terribly discouraged. It’s not that I don’t think these things as having their place; it’s just that I feel the clamorous festivities drown the message of urgency and the need for actual change.
And isn’t that what an awareness month is really all about?
Bringing attention to what is due for change?
Inside the Game: As a Parent
Today there’s about 1 in every 88 children diagnosed with autism according to the Center of Disease Control (CDC). And for each of those children there is a parent, whose dynamic character within the episodic plot of their child’s life, transforms into a protagonist in some sort of quagmire, that now delineates that child’s forever future. Every day people from all walks of life are now forced into a position to be an advocate for the fastest growing serious developmental disorder in the United States alone. These parents have become quite the turgescent force; growing with their blogs and twitter feeds, there Facebook pages and YouTube channels; ranging from the inspirational to the downright lurid cries of confusion.
Despite the high prevalence, research shows many young parents aren’t even adequately aware of what autism really is let alone what to watch out for. According to a 2011 survey released by the National Institute of Mental Health many children may be diagnosed with autism years too late to benefit from early behavioral intervention. And – that – is unacceptable.
Imagine being that young parent, the feeling of that diagnoses for your child, and what that means for their future and your place within it. It’s the dissonance between wisps of hair brushed gently from your eyes; fat paychecks, brand new bikes or phone apps you meant to create; best haircut ever and new shoes. It’s kissing sensually in the car during some torrential downpour; being the world’s coolest dad, uncle, boss or best mom ever – only to wake up under some random tree, with prickly needles in your skin and damp grass stuck to your face. You’ve now no home to go to because you’ve left it or lost it and start to realize that you’ve never really had it. Because all of our hopes and our dreams, our ideas and aspirations for our future and for that of our children, are nothing more than just that: hopes, dreams, ideas and aspirations. Welcome, you are now lost in the maze of autism; putting the rat race to shame; you are now Indiana Jones, but without your hat. Imagine that.
What I am trying to remind you is that home is in actuality, now : a time and a choice. A choice as to whether you want to stand on the sidelines, coach up some excuses, or to actually play, dirtying up your face. And seeing as this month encapsulates my entire life; that 10 years ago it was 1:1000; while 5 years prior to that it was 1:500, only to be 1:88 children today. All things considering, I think that attempting to grow a voice is the least I can do. And that is my home, my now, my choice; and I can only hope that someone is listening.
“There’s a rest from onwardness, too: my body saturated with its life so far, sealed against dissolution. My feet are growing bruises, storing strength for the next reach of the journey” – Diane Fahey
It was recommended that I should consider the use of cheesy quotes. “Awareness in our society has flipped all types of injustice on its head “; “A lot of you cared, just not enough “; “It’s a disease. Nobody thinks or feels or cares anymore; nobody gets excited except for their own comfortable little God damn mediocrity .” People remember cheesy quotes. And statistics, lots of statistics. People like statistics. Curious though that when they’re treated as one they seize to be happy and really don’t want to remember you.
I guess I’m just not comfortable having my memory succumb to cheesy quotes or for my future to be just another statistic. And I think I’d rather have a little faith in people’s capacity to think. There are thousands of parents out here struggling, willing to slap band aids on gaping lacerations; often seeking support in pity fests where people congregate to cry about the fate that has befallen their children.
With my heart drenched with rue, I gravitate towards the minority of us who refuse to ignore the possibilities and opportunities laden within this precarious diagnosis of autism. With currently neither cure nor means to prevent, the only hope a young child might have to enter mainstream kindergarten is to have appropriate early intervention services between the ages of 3-5. As for the children not so fortunate, they depend solely on the human spirit of their caretakers for emotional nourishment, teaching and protection; and those care takers depend on you.
They depend on you as you depend on them. We depend on each other because to put our human spirit in the hands of life itself would be self-loathing. Because the human spirit is the most resilient and delicately amazing tool that you will ever own. We depend on each other to remember that life is not fair; that it can be cruel, harsh, incredibly unforgiving and that it can always be worse. And we depend on each other for opportunities. Opportunities that are amazing and beautiful and full of possibility found breathing within the actual fabric of life itself; stitched together by all those who occupy it; and felt through your association with them.
Life is nothing but a matter of choice. And while I may have chosen to forgo excessive statistics and chose to negate the deepest centers of my heart, I want you to know that I hope it won’t make any difference. Because I want you to consider the opportunities within autism, because I want you remember.
There is in every true woman’s heart, a spark of heavenly fire, which lies dormant in the broad daylight of prosperity, but which kindles up and beams and blazes in the dark hour of adversity – Washington Irving
Eight years ago after my son’s diagnoses I was informed of how the rate of autism had risen from one in over a thousand children, to about 1 child in every 150. That’s a freakish genetic epidemic. Can an epidemic even be genetic? It doesn’t make sense, I said. But who was I to know?
I was just a girl in my early twenties who married my high school sweetheart; burnt out from lack of sleep, crabby from lack of sex, and feeling like a cow from nursing my son. I was bewildered. “Please help me understand”, I pleaded to the world, yet no one could help me understand because no one else understood. So I did nothing but obsess over autism and everything else that led to, which was everything! It got to the point where I felt like spontaneously busting out in delirious laughter, chanting the mantra “Brains! Brains! Must know brains!”
The doctors just patted my head and told me that it was their job to learn, so just relax. They said that this is a condition that was always there, only that the diagnosing is more accurate. Surely you see that the teachers and doctors and parents back then just didn’t notice all of the children toe walking, hand flapping, and tantruming inconsolably. Really? So I should just not worry that I have no way to connect with my son? I should just relax in a position as a mother with no tools to parent? Oh. Well, I’m not okay with that. So I fought. I fought, and I learned and I learned obsessively, to the detriment of my family. I fought because I was not okay with settling for impractical solutions and dubious explanations.
Heartbroken, angry and isolated I had placed myself in a position to be ostracized. Being such a young mother I blended in with the nannies at the playgrounds and struggled to make friends. I was a quirky stay at home mom who tried her hand at small talk in big waiting rooms. But all too often I’d have the whole room’s focus and quite literally on several occasions, people would take out their crude electronic notepads to take notes. Nice.
I remember berating myself for not being like other people and just wishing for some normalcy in between all the tantrums, the marital fighting, the housework, the dozens of therapies to shuffle to, and the dozens of laws to learn so I might better advocate for my son. And I just wanted to scream. So I did. And I lived life unscripted as we all do, learning my character of the stubborn foolish person that I was – and still am. The only difference being that I wear the understandings of now; and so I no longer really give a shit about anyone’s brain but my own, and my husband has since passed on. And the topic of autism has become so convoluted I don’t even know what to tell people anymore when they ask, if they ask.
The whole arena has drastically changed since then and they’ve now enlarged the label of autism to be grossly encompassing, diluting the possibilities to find whatever environmental factors that could in fact be a trigger, (whatever it is exacerbating the genetic predisposition to be sensitive towards environmental insult; water, food, air, vaccines, medicines), with our bodies being incredibly resilient yet so incredibly delicate. Bombarding it with the amount of toxins we do might not be such a bright idea, don’t you think?
And so the question is as always, what do we expect?
What did I expect, and that was only the beginning.
Tenacious; because I Don’t Want to be pulled apart …
Every day I wake up ready to conquer my world; managing my expectations and my emotions too. Like many parents I swim in the depths of countless ignorant comments and “advice”. I withstand rude staring, scowling, and inconsiderate speech. I stand bravely patient through all of the condescending tones and doleful stories of bullying and bulldozing. Patience isn’t a virtue, it’s a skill; to be practiced and perfected every day. I’m practicing it now as I carefully articulate myself without dulling the point of my pen. Patience is surely for those who wait. And so I wait. I wait and I watch.
I watch my son jump into the sand box super excited to play with the other children in there, but he’s big now. Taller and older than the other children who stop dead in their tracks, their shovels and sand pales removed from the box as they talk about the little boy they don’t understand. Within a manner of minutes I watch my son’s facial expression crumple like a piece of paper. It’s heartbreaking. But I haven’t the time to cry, so I join him after he’s been completely ditched, sitting there alone. And I bust out my ridiculous, absurd inner child who conveniently has thrived being wired the way I am.
I patiently wait for those words, those magic words that might kiss your eyes closed so you might see autism as I know it. How does one even communicate the serendipitous warmth of carpet beneath their cold feet, or explain the suns beaming through the icy window of autism. Autism is what defines my son’s very way of being, how he connects with the world around him. Just as each person is unique unto themselves within a personality type, each child is unique behind the label of autism.
I smile constantly throughout each and every day; woken by hulk smash staring me in the face, being fed “a cheerio” because I’m a good mommy, or being told that my civic is really, a super cool bus. But I also endure a sharp pain every single day as I recall a childhood friend asking me, with my son whaling in my arms as an infant, verbatim: “I bet you can’t wait to hear his voice,” at which I responded, “We’re listening to his voice right now! I can’t wait to hear his thoughts.”
As warm as my son’s heart feels on my face, autism is the cold tundra of reality; diagnosed with a disability that impairs his capacity to communicate. Can you imagine what it’s like to be full of rage and anger or confusion or deep sorrow or pain, and not be able to tell anyone? Can you imagine what it’s like to never hear the words, “mommy, I love you” or more importantly, to understand what it means when someone tells you, “I love you too.”
Life is so hard for him, and I can’t do anything to change that.
With barely any respite, resources and time, I can only attempt to pave a better future for us both, and do everything in my power to infuse value and quality into his life. I can only prepare for the day I am no longer here and he is on his own, dependent on the frigid framework of life. These children are impaired in the very skills it takes to mend relationships into motion for their lifetime. That’s an awful place to be considering that is exactly where the germ cell of happiness resides; within the hearts of those you love and who love you.
How dare people feel alone when they are intellectually capable of breaking whatever emotional barriers they have, that create the very pain they suffer. Especially when there are so many people out there needing to connect but haven’t a voice to ask. If you listen close enough you’ll hear the nearest special recreation center looking for volunteers. You’ll notice your children being encouraged to be typical peer “buddies” for those partially mainstreamed in their school. Or if you have sharp wits and a keen sense of smell you just might be brave enough to open that can of worms; eating one bite at a time, estimating just how heavy this issue will weigh in twenty years: for the economy and the people who live in it. Yet the most valuable thing to hear would be to realize, that every social therapy out there in turn teaches us something of ourselves; as autism is us, exemplified. We deserve more than we are giving.
It’s with this devoted sense of opportunity that I manage to be strong on a daily basis. I don’t spend my time stuck in the mind trap of grieving all of those unrealized hopes and dreams. Rather I’m doing pirouettes, carrying little piles of laundry to the baskets for wash; literally. Yes, I do remember that my son might never have his first girlfriend. He’ll never be reprimanded for his first bad grade. He no doubt won’t be driving; he can’t even button or zipper his pants due to low muscle tone and impaired fine motor skills. But I also remember that I’ll never have to worry about where he’ll be when it’s late. I’ll never have to worry if he’s drinking or driving or having unprotected sex.
He’ll never suffer the price of his own stupidity.
Maybe this is what people should be made aware of: that it is always how you look to the situation, not the situation in itself. And how you look to things is a choice. And no one can make that choice but you. The propensity to be strong is proportional to the fall and your ability to seize opportunity. It’s that opportunity to carry on; to not cry about things not worth crying about; to place more value in the people around you; to be self-aware enough so you might manage your expectations, emotions and addictions, even the psychological ones. And smart enough to know, it can always be worse. It’s the wisdom when you’re walking to your car and notice that perfectly aged fall leaf crushed beneath your foot, and you realize that your dance with life too, will one day lose count.
We Tell Our Dream and Do What We Are: You are what you give
For the next 30 days you’ll find many people attempting to give a voice to autism. Know that these children’s families practice this year round. Our throats are sore from constantly trying to correct misperceptions about the tantrums and meltdowns and the prognoses. From talking to the teachers, assistants, speech therapist, occupational therapist, developmental therapists, the neurologists and sometimes a physical therapist. And on occasion an art therapist or a music therapist or that lady trained in hippotherapy. We’re tired of giving disclaimers, excusing ourselves and our children, providing explanations and requesting leniency for the blip our kids caused in other people’s placid day.
As a matter of fact, this time last year, I stood at the checkout in the grocery store as my son had some full-fledged meltdown. Struggling with the products, the cart and his hand so he wouldn’t dart away, I had about a dozen people just staring at me. Trapped in humiliation I finally screamed, “Autism Awareness in the making people!” A cashier then stepped up to help me out the door. Know that while I’ve done my best to tailor the harsh details of autism, I want you know that you’ll never have true awareness without getting your face dirty, ingratiated in fierce challenge. Because that is what autism is in the raw: challenge. The rest of that evening my son spent his time giggling while he pretended that post-it notes were McDonald ham-boogers.
I think what gives people such as myself patience is hope. Hope for friends who enjoy the experience of my son’s company as much as I. Hope for his future world I’m still struggling to establish. Hope in my capacity to shed empty expectations and enjoy new experiences and new people; to friends who get potato chip crumbs on my couch, pissing me off; people who tolerate my outdated south park references and pointless rambles; to those who love me who will try to fix my feelings from time to time. Hope for a time when things won’t be so ridiculously complicated.
Hope that I might inspire those around me to take responsibility for their own lives whilst rejoicing as it hurts; to debate deep meaningful silences in pantomime or to just drop the useless cynical pride that exhausts everyone around them in exchange for helping each other up. In exchange for a place where your coffee sits burgeoning new and exciting worlds, within the rim of moisture outlining its cup. A place where monotonous cubes, dirty uniforms and cloud bunnies out the window turn into feelings of grandeur importance, being authentically appreciated and loved.
A place where Google will challenge your intellect to cull through a barrage of information, provide you with the information of the nearest special recreation centers to become involved in, or respite organizations where you can actually do something to help. Hope for deep meaningful help that both those giving and receiving will intellectually and emotionally feel and benefit greatly from.
Millions of people are desperately hanging on to their patience and hope for a time where people will forgo the curiosity of studying the expressions of distraught struggling parents and choose to take action, sincerely inquiring “is there anything I can do to help?” Know that you’ll either be granted superfluous amounts of gratitude or the understanding. An understanding that whatever abrasive response produced will melt like a snowflake in your hand the moment that parent walks away, bruised by the self-awareness that it has been THAT long since they’ve felt the kindness of a stranger, they hadn’t known how to receive it. Millions of people fighting for patience, patience for hope and hope for change.
Change forging a place of forgiveness and maturity and peaceful resolution of that one day we might all just let go, allowing the desiccants in the room to drain the moisture of our faces till our minds realize that autism, among all other great feats in life, is just another part of the process; an opportunity to learn, to understand, to help; to do more than just exist.