The Pirates of Autism

pirate-1

Once upon a time I was not a pirate.

Once upon a time I colored inside the lines.

Once upon a time autism changed everything.

Once upon a time I might have been more apt to follow others and be the obedient good girl but, once upon a time, navigating the spectrum changed that.   I’ll also tell you right now, you may not like what I’m about to say so I urge you to brace yourself and keep the mind open because, I promise you with my whole heart, it’s going to cut across the grain that you’ve grown comfortable with.

Pirating is like that.

One of the earliest lessons the spectrum taught me was to not put all my eggs in the “experts'” basket.  It became clear pretty quick that the experts were flying as blind as I was. Autism wasn’t new but in the days of Y2K, the numbers were rising and the doctors and game plans were as gray as the spectrum.  Thankfully,when it comes right down to it, I don’t toe the party line well so going off on our own, while not entirely comfortable, was not entirely foreign either.

We set sail on the spectrum in the spring of 2001 and I will say we hit rough seas early on because, for goodness sake, it was autism.  It was vague.  It was gray.  It was the unknown.  In those beginning gray days, when the journey began, the skills I thought I owned were fairly useless when it came to autism.  Autism, in my home, seemed to thumb its nose at conventional thinking and it didn’t take long until the battle weariness of autism hit me hard and square in the face.

Autism, in those early days, laid me out flat and made me unsure that I even had skills enough to make the journey…much less overcome anything.  Who was I to think I could take on autism or make a difference?  I was not a momma with a plan.  I was not an adult with a medical  background.  I was not a woman with any know how.  I was nothing more than a momma with fear flying hard at her back.  Fear that she might not do enough, be enough, have enough to help her boy.

Fear is a powerful motivator.

It didn’t take me long to see that following the rules of the party line with the typical tool box was not always what my boy needed.  I also learned quick that though the spectrum landscape was full of autism snake oils, unicorn-dream-cures and some crazy good sales masters, following the flavor of the month autism-cure-gurus was also not for me.   It became clear that those autism-one-size-fits-all cures were not going in my basket.  The only part I was beginning to understand is that the party line and the protocols from the powers that be and the gurus were not going to bridge the gaps my boy was struggling with…no matter how much celebrity or mainstream endorsement the gurus and unicorn-dream-cures received.  It was becoming clear, in order to understand autism, the most important thing I could do for my boy was earn a PhD in my child.  The pirate in me was coming to see that I couldn’t and wouldn’t concern myself with the autism-cure-gurus.  What I did concern myself with in those gray days was standing alone if I had to and becoming the all-knower of my spectrum kiddo because that was the only way to help him…and help others to see him.

Standing alone is not always easy.

Going against the spectrum grain is not easy.

Saying no to the experts is not easy.

Following is easy and, in many ways, more soothing than pirating…so why would any sane minded momma leave the pretty, sweet, mainstream, toe the party line world behind?  Why be the push-back mom at every turn?  Why transform one’s self into a bitch, a rebel, a pirate, a pariah, a walker of the fringe, a loner, an unwanted soul?  Mostly because what I was learning best in my early pirate days is that there are no cookie cutter answers or quick solutions on the spectrum.  I left easy behind me because I believed my boy could be MORE than the experts claimed.  What I came to discover during our second year of navigating the spectrum full time is that pirates understand easy is not always best.  Pirates don’t play follow the leader and pirates don’t take the well traveled path.  Pirates know how to be the bad guy and pirates aren’t afraid to stand alone when they have to.  I left the sweet and popular life behind me as we set sail, navigating the spectrum, because I believed in my boy and there was little in the mainstream protocol for autism that seemed to work for us.

Chelation?  NO.

Relegated to Special Ed forever? NO.

Gluten/Casein free living?  NO.

Free range melt downs? NO.

Oh, honey, just wait it out, he’ll be fine?  NO.

And when the rest of the world seemed to be running away from medication, we stepped in and said YES, we will try.

Early on, in the rough and tumble, sparkle-less first years of our navigation, life and people were not always kind.  When I began to see those dismissive glances in the eyes of others, the pirate in me grew and crowded out the sweet-compliant-momma that I used to be.  I could hear the scream welling up with in me, “Do not see my boy like that!!  See him for who he is.  He is more than one of the students that you have warehoused in those classrooms at the end of hallways for decades upon decades.”

In the beginning I believed everyone could see his sparkle and his potential as much as me and I was genuinely heart hurt when I realized that mostly what people saw is that he belonged “elsewhere.” The elsewhere that resides OUTSIDE of the mainstream and if I wanted my boy to where I believed he belonged, I would need to become a constant architect in my spectrum kiddo’s life.  I would need to be his champion and to become his pirate.  I would have to be present….at home, at school, and in the community if I wanted him to be seen through my eyes.  I would have to spend the time, the minutes, the hours, the sometimes really difficult days of getting to know all of him if I was going to convince others to see more than the autism and see him in something more than a segregated life.

Even when the world stood against us, the pirate in me could see the masterpiece within him.  An original.  A child with a processing system more complicated and complex than I could ever have imagined.  I have spent the last thirteen years supporting his needs, observing his behaviors and analyzing his reactions because who he is not only matters to me…it completely astounds me.  In those first pirate days, before I really understood pirating autism, I started seeing the other families who navigated the spectrum did so a whole lot differently than me.  I began to see that who I was was different.  Not wrong or right but different.  If another spectrum kiddo did not sit down to the breakfast table and find two pieces of bacon every morning on his plate, placed on the right side, he would scream and fall apart and sparkle momma would drop everything to comply with the request or dash out to the store to get him what he wanted.  The entire family became trained in how to properly make breakfast for the boy so that he would not scream and howl and fall apart.  When he developed a comfort in the family routine of turning only left out of the driveway every single day and screamed and howled and melted down when the family one day turned right, the family changed their way of life and never turned right again.  The philosophy was to encourage, indulge, comfort and support and the pirate in me was not having any of it.

I was and am the opposite of the party line.  Those early pirate days would lay the foundation that would later come to define he and I.  If my boy ever developed a need to control his breakfast plate and my cooking to that extent, I immediately threw a wrench into the process so as to desensitize the obsession with support, change and repetition.  If he was obsessed with two pieces of bacon, I’d meet the tantrum/melt down head on by giving him one or three or none and I’d do it until he was desensitized to the mania that was gripping him.  If he wanted to only turn left, I’d prep him and support him and then turn right until he came to terms with it.  Although force feeding a child or making food a combat issue has never been my cup of tea, introducing them to new textures and flavors is a hobby of ours because change is something good to introduce too.

Autism may be a different wiring system but autism is not less intelligent.  I assure you, autism is wildly brilliant and my boy has been sharp as a tack since day one.  He understands how the system works…and he uses it to his advantage.  He can determine the “weak link” in a matter of minutes.  If he can throw a fit and get what he wants…why not try?  And try is what he does…with gusto.  If some of the big people will let themselves be manipulated by the sweet autistic boy then he feels it is his duty to give it a whirl and that boy, if allowed, can whirl it up big.

Did the boy become well behaved over night?  Not so much.  Was he well behaved by four?  Oh goodness no.  He was non-compliant and downright defiant.  My boy, as cute as he is, was anything but pretty in those days but I promise you the earlier you begin to set your backbone firmly in place, the earlier you see results.  It’s not a magic fix, it’s a process.  Expectations, structure, discipline, firm consequences and consistency all play their part and discipline, when done well, is neither loud nor angry.  I will also emphasize that a child’s ability to control and regulate their own behavior is also fully dependent on age and verbal ability.  Discipline is the art of give and take, back and forth, and it is a system of behavioral communication and choices.  A child who cannot  communicate cannot be held to the same accountability as a child who is verbal.  As my boy has matured AND gained verbal abilities, I have expected more of him behaviorally and he has, with ups and downs, stepped up to the plate.  It is not magic, it comes with chaos and ugly…and the path to a child regulating their behavior starts slow, in the early years, and in small steps.

We pushed to get into regular ed amidst the skeptics and once we got there, it was up to us to give them a reason to keep us there so, truly, behavior mattered.  And, honestly, if you let the behaviors whirl out of control you will not be able to see his academics.  Behavior WILL eclipse academics in the classroom.  There is a whole lot of talk these days about the difference between melt downs and tantrums and, honestly, it’s simply a matter of semantics to me.  In the end, whether it is a tantrum or a melt down…it does NOT matter…a child, if they are going to be educated in the richer educational classroom, is going to need the skills, strategies and support to control them BOTH.

I understand why children tantrum/meltdown.  I understand why parents take a lax approach.  I understand because it is so much easier to give in to the tantrum and soothe the meltdown than to be the bad guy…over and over and over and over and over again.  Being the bad guy all the time is NOT fun.  I assure you pirating is not the fun place to be because the spectrum behavioral combat zone is not a pretty place.  Being the bad guy is NOT easy and being the bad guy all the time is, well, daunting.  But you know what else isn’t easy?  Watching your beautiful child being placed in a segregated and hardly educational classroom full  of children who cannot control themselves either.  That was my motivator for toeing my own line rather than sticking to the party line.

Hate me because I am a pirate if that is easier for you to do but watching your beautiful and brilliant child relegated to classrooms full of out of control kiddos who are warehoused and not educated is far worse than standing up to the ugly that comes from facing tantrums/melt downs head on, every single day because that is what it takes in those early years in order to teach a kiddo the skills that are required to sit in a regular education classroom and receive a real education.

I tell you this as both a mother and a special education teacher.

And the bottom line is that you can debate the semantics and differences between melt down and tantrum until you are blue in the face but the reality is that kiddos will have to learn to control both to be in a regular ed classroom which is where I always wanted my boy to be.  You can coddle and make excuses but all that does is leave a child ill prepared for an educational system that will not tolerate the outbursts for long and will come up with their own system of requirements for removing your beautiful and brilliant child into a much less academic placement because the cute tantrum of a four year old, fifty pound child is controllable but the escalated and magnified meltdown/tantrum of a thirteen year old who has been coddled for a decade is powerful, damaging and violent and will land a child in an restrictive placement.

Pirating may be romanticized by some but pirating, on this spectrum, ain’t about the flip flops and umbrella drinks.  Oh goodness no.  That’s a whole other pirating system we can all aspire to when we take The Village on vacation one day.  Pirating autism is a matter of standing alone, walking away from the protocols and gurus that don’t serve you and traveling the path that works for you.  Pirating autism is the way in which you keep your backbone firmly in tact in the face of adversity and disagreement and move forward even when you have to do so alone.  Pirates even cry alone…until they reach The Village…and then we cry with friends who understand.

I am not of the mindset that asks the world to create a new set of rules to accommodate all of my boy’s quirkies.  I understand where that sort of notion comes from but, as a pirate, I also understand we all live in this world and this world comes with a set of socially acceptable rules and customs.  There are rules of conduct and behavior and it’s my job as a parent to prepare my boy for  that world if I expect him to be able to navigate it well.  It’s also my job to prepare the world to be a little more tolerant so that my brilliant boy can be appreciated for the fabulous gift and asset that he is.  Both sides need to come together, to move away from their set in stone corners, so that the middle ground becomes a place where we all can come together in love and support and provide better outcomes for our kiddos.  The pirating life may not be for everyone but, for me and my spectrum kiddo, it has meant the difference between living a full life and being hidden on the periphery so, come what may, good and bad, it’s the pirate life for me.  Sparkle On, my friends!

5 thoughts on “The Pirates of Autism

  1. I thought about leaving this comment on your post but I honestly feared that I would be ridiculed. But in an effort to stand up for my son AND my parenting I needed you to at least be aware of what your words might cause for people. You don’t need to reply back. Your blog and your journey is for you and I do applaud that. I applaud your ability to do the best thing for your child. And I also appreciate your facebook that embraces the coolness that autism can bring. You seem to call for togetherness but also condemn at the same time. It doesn’t make me angry, but it does make me sad. I am pleased that what you have done has worked for your child. That is great. But your words seems to suggest that forcing my child to fit into a school that is not a good fit for him is a good thing. When my child goes into a place that he cannot make a decision about what he wants because there are too many choices in front of him or that he is in physical pain form the ringing bell of the class room, and I remove him, that is not coddling. I am a single mom and my child’s father believes he can discipline my son’s mouth sensitivity and ear sensitivity out of him. Your blog would aid my ex husband in this quest right now. Trust me, shoving food into my son’s mouth to “desensitize him” and having him vomit is not a good thing! Your village right now does not seem supportive, it seems only a place that would allow others to hurt my child. Thank you for your time.

    • I completely understand. I have also said that age and verbal ability would also affect a child’s ability to control and learn strategies for their behavior. I would NEVER force food into a child’s mouth nor have I written about that and, instead, I have said that it was the environmental control that I was speaking of. I have always prepped my boy for those things he has sensitivities with. I have been in the same place with a my boy and noises and it became a system of preparing him and working with teachers to help him become more comfortable with the environment so that overtime, he became fine with them.
      I thought I tried to be careful not to offend but I am not perfect. As I stated with my PSA , it is what I have found to work for my boy. I also have always wanted my boy to be in regular ed and to navigate the world as is so I may not be as soothing as some mommas.
      Oh and you can always speak your mind. I truly appreciate it. Never any anger from this end. It’s all an open dialogue 😉

  2. I agree completely. My son needed to be disciplined and pushed to his limits so those limits could be expanded into a normal life. He’s gone from hiding his eyes and holding his ears every time we went into a store to wanting to go every time the car leaves the driveway. He’s gone from eating only pasta and butter to eating a well-balanced diet. Did this happen overnight? No. It was more like a 5-10 year process of gently coaxing him to hold on just five more seconds, try just one bite of this food, hum to himself instead of screaming at the top of his lungs. He has developed into a person other people like to be around, and I think he will succeed because of it.

  3. Some of our journey may be different, but you have a fellow pirate standing here next to you both cheering you on as well as thanking you for the encouragement and support you provide to the rest of us. ❤ Sparkle (and pirate 😉 ) on! 🙂

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