Editor’s Note: By now you know the drill. I turn 40 on June 6, 2012. As a little challenge to myself, I’m spending the next year writing 40 posts that say something about my life. This one is technically a reprint. I wrote it years ago. But it has to be one of the most important things I’ve ever written and published on these pages. And as far as commenting on my life – this is as personal as it gets.
“New Insights into the Hidden World of Autism”
The headline screamed from a Time magazine cover as I was walking through the Des Moines airport, awaiting my flight home from a two-day client visit. As my tastes in periodicals tend to run towards the entertainment mags, it’s not the sort of cover story that would normally grab my gaze. But… those words in that bold print collaborated to jog something loose in my sub-conscious – a nagging threat that I had, for the moment, kept successfully at bay.
I grabbed the magazine and paged through it on the long flight home. After completing the article, I ran through it again, my mind honing in on key notes – “Signs For Parents To Watch For” – that echoed the internal murmurs I had heard late at night, when the house had quieted and the concerns of the day had been shelved. In those final few moments that stand between conscious thought and slumber, a nerve-wracked concern would pinball through my brain. And then sleep would come and I would awaken the next day – none the wiser to my fears… until later that evening when the dance began anew.
But, these tales of trademark traits – late speech, social awkwardness, fixation with lights and fans, the inclination for parallel play, emotional development delays – they began to form an internal checklist that I realized quite quickly I was dotting affirmative on in rapid succession.
Too often we don’t want to voice the fears – to stare into the mirror and utter “One Bloody Mary, Two Bloody Mary”, and so on, for fear that we will bring forth the boogeyman to vibrant life. It’s easier to pull the covers up and slink down nice and deep, hoping that the dawn will rise and those specters that haunt will remain just figments of our imagination.
So, despite the fact that this article, and its sensible points, was beginning to occupy decent real estate in my waking thoughts, I chased those ghosts away.
And I never said a word to my wife.
About a week later, Andi and I were settled in for the evening getting ready for a couple hours of R&R after a hectic nine-to-five. There wasn’t much on the tube but we needed to veg, so we flipped around until we came across Scrubs. While I would later grow to become a regular viewer, at the time it wasn’t appointment viewing. That said, I had seen enough episodes to find it entertaining so we set the remote down and just lay back – all stress and worry melting into the sofa.
And then that word was shouted to the rooftops again.
This episode in particular dealt with Dr. Cox and his reunion with an old med school buddy. The two had spent their lives in healthy competition – always jockeying to be the best student. The best doctor. The best man.
And in the midst of their reunion, Dr. Cox spies something that staggers him. As his son plays with his buddy’s child, he notices the boy building with blocks but not in the usual scattershot, messy way that toddlers often do. No – this kid is arranging the blocks in very specific, particular patterns. And in his play, he is not engaging his playmate – just building alongside him. The two are playmates only in the strictest definition of the word; they are playing together in the same space but internally they might as well be occupying different spheres separated across the universe.
At the very second that it felt my demons had been abolished to the darkest recesses of my mind, they came shrieking back. Suddenly, the enjoyable slice of fiction that was supposed to chase away the curious creatures nibbling away at my brain, had now become an in-process documentary into our own home life. And I could feel my nerves clicking into place. This wasn’t a thought that I could chase to the shadows much longer. I was going to have to talk about this.
“I think there’s something different about Colin.”
According to recent studies, one out of every 100 children in the United States falls somewhere on the autistic spectrum. To the outside observer, that number is staggering. Seriously, one in 100 is not the type of odds you want granted when staring down something as life-altering as that diagnosis. Especially not when your odds grow astronomically the closer you get to home. For me and my wife Andrea – our odds are decisively smaller. We’re parents to a pair of kids and in our household, the rate is closer to one out of every 2 children.
That was late winter 2005 when Andi and I realized the sum of all our fears were being calculated correctly. Or, more to the point, the suspicions that had been seeded in us the year prior were now beginning to grow fruit and it’s at the time that we decided to seek out a professional opinion.
At the time we were the proud parents to two young children. Colin, our first born boy, was on the downward slope of two while Aria was knee deep in her first year of life. Having watched her big brother hit his important milestones, albeit a bit slowly, we knew it was only a matter of swiftly moving time before we would be staring down her 2nd birthday, when she’d be looking to commemorate the occasion by taking a few laps around the house. Her swift scooting about in this slightly frigid winter were no doubt the precursor to the end of days where we could no longer depend upon our little princess to be where we left her last. Goodbye to innocence.
In more ways than one.
Colin is our Cinco de Mayo baby, born May 5th of 2003. If we were slightly puzzled at his slow speech development, we had been internally battered by a mental maelstrom when he approached three and was still struggling to express himself verbally. So, we discussed our concerns with the pediatrician who got us connected to a speech therapist. She began working with Colin in late Summer 2005 and in a few short months had made some enormous leaps and bounds with him.
But we never really use the word “autistic”.
At the time, Andi and I would console ourselves with one constant refrain. We are gonna’ rue the day we wished he would talk. We’d smile knowing (and hoping) for the day when we could issue the same universal complaint voiced by parents when they’re having one of those days – “Why won’t this kid shut up?”
It’s a strange thing to wish for – that your child will start talking so you can get to one of those days where he’s driving you nuts with his incessant chatter. But, it is what it is. A plea for normalcy. A dire hope that this is all just a phase and that in good time, all those dreams you had of being the Dad tossing the ball with his son and regaling him with tales of your own playground heroics (which in my case would be more fantasy than reality but he didn’t need to know that) – anyway, you just wish that life will get on with its regularly scheduled programming and the show will turn out all right in the end.
So, despite the fact that the magazine article and Scrubs were now conspiring to raise my alert level to Def-Con 5 – in addition to the fact that we had a specialist working with Colin on shaping his speech, we never let that word join the conversation. But it couldn’t remain in the closet for long.
After enough time had passed that our collective worry began to relax slightly, the speech therapist suggested that Colin’s blossoming voice would be well served through early enrollment in preschool. He was a year off that mark but the extra time in a classroom session would result in increased socialization and he would benefit from real-world interactions with a peer group. So, she jotted down her recommendation and pointed us to the local public elementary school which had a few designated slots each year for early enrollees who would do well with a head start.
As part of the early enrollment process, all children are required to go through a pre-screening session where various educators (including the preschool teachers, school psychologist, speech therapist and the behavior expert) watch as the children interact in a play-based classroom setting. On one chilly, overcast Monday morning in early January 2006, I brought Colin to the school for the screening. As we were told this was merely a routine assessment, Andi proceeded with a pre-scheduled engagement providing the vocal accompaniment at a funeral. After all, aside from waiting in the hallway while the assessment was conducted, we weren’t due to hear anything from the school for a few days.
There I sat, outside the classroom door, leafing through my copy of the Boston Herald as Colin played away inside. He had made such strides since he first began meeting with the speech therapist that we felt pretty good about this meeting. The therapist herself had said that in her interactions with Colin, she had seen some marked development and she actually expressed some good-natured concern that they might not accept him into early enrollment simply because he had really made those great strides and was lining up in league with where the textbooks say he should be at that stage.
So, Andi and I looked at in one of two ways. If he got in, great – FREE PRESCHOOL!!! If not, even better, because that meant our wild and crazy thoughts would be dashed against the rocks. Our boy would be all right and thus everything would be right with the world.
Colin’s session lasted about 40 minutes after which I brought him to Dunkin Donuts for a little reward. He picked out a couple of Glazed Munchkins, telling the counter help exactly what he wanted, and we settled down to enjoy the sweet treat before heading home. I had taken the day off from work so when we returned, we played with his blocks, which to my delight he enjoyed stacking into towers and then knocking down (no specific patterns that I could discern) and then I escorted my big boy off to bed for his afternoon rest.
That’s when the call came.
It was his preschool teacher and she was calling a few days too early. Nothing to worry about, I reassured myself. She’s just got a slow news day today.
“Mr. Humphries. I wanted to say that it was a great pleasure meeting Colin today. We’ve been able to meet and everyone here is in complete agreement that he should qualify for early enrollment.” (Oh, GREAT… that is exactly what I DIDN’T want to hear).
And then it got worse.
Flashing forward, about six months into his enrollment later that year, I received another call from the teacher. She sounded honest, caring and concerned.
“We think that it might be a good idea if he had a consultation with the May Institute…” And at that my knees buckled.
Despite the fact that I had been denying the existence of that damned elephant in the room, I had done enough Google searches to know that the May Institute was one of the preeminent facilities devoted to studying and treating autism in America. If she was suggesting that the May Institute get involved then there was no more denying that which vexed us most. There was something dire indeed and now that an objective eye – and several sets of them, no less – had taken a peek at our son and determined that something strange was afoot, those thoughts and fears and worries could linger in the lockbox no longer.
So, that’s exactly what we did. Andi and I discussed matters many times and made an appointment with the May Institute. As they are headquartered in Randolph, MA – they made it easier on us by dispatching an expert for a series of at-home evaluations where they would monitor Colin’s play. In addition, they worked in league with the school and Colin’s therapist – and by combining their observations with ours, they could come up with a preliminary evaluation pointing all of us to a probable cause.
When the process was completed, the diagnosis came back equal parts encouraging and perplexing. There is an Autistic Spectrum – so called because there are such wildly varying degrees of autism. The worse case scenarios find children off in their own Neverland, sometimes non-verbal, unable to socialize and interact with society as we know it; true “lost boys” (and girls).
As you work your way further along the spectrum, all sorts of so-called “normal” traits enter until you get to the top of the rainbow, the highly functioning autistic disorders such as Asperger’s Syndrome, whose sufferers are nicknamed “little professors.” It’s the latter case that luminaries such as Beethoven and Einstein are suspected of having. In essence, this appears to be the realm of the genius, as if their brains were forged to focus on being the best in one particular discipline – better than all the rest that ever walked the Earth – but in achieving greatness there was a trade-off. These “little professors” are often categorized as bold and brilliant but always slightly aloof where it comes to social interactions.
Colin’s diagnosis came back as PDD-NOS – which is short form for Pervasive Developmental Disorder – Not Otherwise Specified. What this means is that he is likely not autistic as classically defined but there are enough traits that suggest a social and emotional development disorder. The potential for Aspergers exists due to his superior intellectual development tempered by his social and emotional delays.
So, the upside is we didn’t receive the worst case scenario but the downside is we got feedback that essentially acts as a shrug. The “Who Knows” diagnosis. As with autism and its related disorders, nobody knows the cause – whether it is brought about by environmental, pharmacological or biological catalysts. It’s a tricky condition conceived in a voided nexus; the same dastardly black hole that sometimes traps these poor lost souls for life infinity.
One thing we did know was that we were now in good hands. We could tell early on that our local school was excellent, and its educators exemplary. As I write this, three years removed from that fateful first meeting, we’ve grown to befriend and admire Colin’s fleet of dedicated and concerned school time caregivers. Not all families find themselves in districts as fortunate as ours.
Colin is currently midway through the first grade – right in step with where he should be at his age. He’s a bright, happy six year old boy whose silliness has grown in leaps and bounds over the years. The credit for those amazing developments can and should be doled out to a vast collection of caring souls.
His teachers and specialists have done the Herculean – focusing and refining their approach on Colin’s curriculum to keep him in lockstep with his peers’ educational development while helping to accelerate his social and emotional growth. He has more work to perform before really getting in line in that regard, and the jury is out on whether he’ll ever truly be the textbook “normal” but the leaps and bounds he has displayed can be called superhuman.
Once upon a time, he wouldn’t say “Hi” to a child playing near him and now he’s actively the ringleader on the playground, guiding his friends and classmates in imaginative play. That said, in a classroom setting an aggressive shyness still tends to take hold, proving his constant challenge to date – but out in the great wide open, Colin blossoms and runs alongside his classmates with equal aplomb. Seeing him scamper to the slide, tackling the labyrinthine maze of chutes and ladders that make up many play gyms, you’d be hard pressed to discern any developmental disorders.
I like to give his little sister Aria some credit. She lags behind him two years chronologically so when Colin first began this journey, Aria was naturally non-verbal. As her little voice blossomed, and she grabbed hold of her own innate independence, she worked miracles to break her big brother from his shell, without ever realizing the great power she wielded with greater responsibility. Through the purest act of being a kid, and a sibling, Aria rivaled the experts by grabbing her brother and dragging him out to play. And now it’s gotten to the point where anyone wandering into our home, as big brother and little sister co-conspire on their latest madcap scheme, would ever detect that Colin had an ever-present challenge to tackle. Taken together, they are a tinderbox – each one sparking the other to new heights. They play, fight, laugh, scream, giggle, chortle, make us proud, make us scream, make us laugh, and make us want to throttle them in equal measure. They are the consummate siblings – friends one second, rivals the next. And family… always!
And then there is Andi and I, who through it all have largely remained even keeled. For starters, as much in life often proves, it could always be worse. Every family has their share of challenges and every marriage faces tests; it’s all in how you tackle it. We’ve had it different than most of our friends but not worse than many people in this world, and that’s one constant thought that humbles us. It’s been a bit harder to weather some days but not impossible. Nothing’s impossible so long as one remains driven and if anything drives Andi and I forward, it’s the combined love for our children – the two most special beings on this Earth who lift us up to even greater heights than we support them.
That being said, I do harbor a few regrets which is largely the reason I chose to write this piece.
As many of you know, I have tended this parchment of online real estate for the past four years and in that time have written almost 400 full-length articles. I’ve used these pages to share my memories; always slightly exaggerated to goose a giggle or two out of you. I lay bare the mundane facts of my life simply because I feel there is nothing gained from a life from which we don’t laugh. It’s healthy to point and make fun of ourselves. It makes us human… it makes us smile… and it takes the edge off. So, I have no problem trotting out my skeletons simply because they look funny when exposed to the right light.
But I’ve kept this tale silent for far too long. For starters, despite the fact that I am his Dad, I never really felt that it was my place to talk about my son, at least not in this regard. After all – it’s his life, not mine. Who am I to broadcast his challenges to the world?
But, I realize that I’ve been granted the ability and forum to communicate our personal record and keep sacred my family’s shared history. I realized that it’s incumbent upon me to draw the spotlight to my family’s accomplishments. After all, I’m the writer. Even the most mundane of our species are capable of great things – and we often hit these huge milestones on a daily basis without ever realizing it. When you stop to pick up someone’s keys they dropped, you’re forging a connection and for one brief moment, proving positive how wonderful it is to walk around with an evolved brain. So, if I see great accomplishment in tiny measures like that, you know I am a proud Papa when I see how far Colin has come. And therefore, I owe it to him to celebrate his great feats.
Unfortunately for him, he has a Dad that likes to ramble and run astray and never met an anecdote (or run-on sentence) that he didn’t like. But I also like to key in on the minutia.
One of my favorite memories is one of his first.
When Colin was first born, as I woke in the hospital room after a fractured night of precious few hours sleep, I remember wandering the maternity ward looking to chase down some caffeine. Knowing my Mom worked a stone’s throw away in the Day Surgery unit, I tracked her down. The zombie that came shuffling from the shadows that morning almost gave her a fright as ‘Dawn of the Ed’ was suddenly upon her. If I were this exhausted, imagine Andi’s condition.
Anyway, my Mom (once again, a grandmother) was all aglow.
“How’s Colin doing?”, she asked.
My reply – an exasperated “Will I ever watch TV again?”
Now, it’s funny to look back on that. Obviously I wasn’t of sound mind and body at that point and I wasn’t even the one who went through decades of labor the day before. And, my life had suddenly morphed in a matter of minutes from care-free to one of supreme care provider. Suddenly, I was on the clock and my shift wasn’t due to expire for at least 18 years. That’s a thought so staggering, I guess I could excuse a momentary bout of selfishness. Here I had helped to shepherd new life and all I could think of was missing The X-Files.
But I think I knew then, somewhere deep inside, that life would never be the same… and that was OK. And, my Mom could never have know that in recounting that comment to me (years later), she essentially hand-delivered the book title I’ll need when I finally get down to the act of pulling this all-together in bound form.
After all, I want to toast my family. I love and cherish them all – more than anything. I feel great pride in their accomplishments; with Colin, Aria and Andi providing daily fodder for me to affix to the refrigerator, hung proudly for all the world to see.
Of course, life isn’t always rosy. We all know this. And I have my trying days where I wish I held tight to a modicum of patience. If there’s anything I’ve learned over the years, it’s that children flourish with that potent blend of patience and understanding. And that’s something I owe Colin daily. Something that I owe the entire family. And something I owe myself.
Especially when I see how adept my boy has been in finding a way to finally resurrect his voice in a constructive manner and then using that voice to dive headlong into dredging his emotional development back from the depths – bringing it to fresh air where it thrives. He still has much work to do in that regard but the leagues he has ascended are awe-inspiring.
I’ve learned a lot from him.
And his accomplishments are legendary. As I write this we are two weeks removed from our annual team meeting with Colin’s counselors at the school. As we all sat in the same conference room that years ago set the table for our plan of attack, each one of us was aglow with funny Colin stories. Colin is beloved at his school and it just lifts our hearts to see each of these teachers, who truly give their all each and every day, beam with pride at the leaps and bounds Colin has made. On his best day, he’s a “delight”. On his worst – “silly”. That’s not a bad prognosis for a parent to hear.
Academically, he is right in league with his peers. He’s reading. Doing math. Nailing spelling tests. Preparing for the MCAS that rolls around in another 2 years. He’s knee deep in the exact same curriculum.
On the social end, Colin is still easily distracted in a large classroom setting but attends very well in smaller one-to-one meetings. This seems to indicate the potential for ADD to join the mix, which we are all closely monitoring. That’s not unusual for these challenges to develop in league with each other. So, while he is prone to lose his attention from time to time and requires redirect back towards the teacher, his social-emotional development has really improved. He may never truly be comfortable staring deeply into someone’s eyes but he’s joined the conversation and often initiates and leads it. The days are numerous now where Andi and I mutter a muffled – “Arghhhh, will he ever shut up?”
Not a bad problem to have, actually.
We’re also pretty sure that we have a future engineer on our hands. One of the traits inherent to autistic children is a focus on fans and lights. Colin has always had an interest in those two household objects but it’s different than what is defined. He doesn’t sit and stare at fans and lights for hours at a time. Instead, he is intent on figuring out how they work. From an early age, when he flipped a switch, his eyes would travel to whichever orb flickered on. Then he’d flick it back, and follow to insure the juice was severed. That’s progressed to today where he’ll often interrogate homeowners on just how everything is wired and which switch controls what, what time they come on, what type of sensors drive the external lights, etc. He’s determined to figure out how it all works. It’s a deep, incisive inquisitiveness that is leagues beyond anything his wordsmith Dad can describe. One day this kid is gonna’ reinvent the world.
And that’s the other reason I wrote this piece. I realized that I’ve never said much of this to anyone – aside from my wife and some specialists. In fact, I wouldn’t be surprised if dear friends of mine read this and reflect, “I had no idea.” I think part of that goes back to my initial misgivings. If I don’t think about it, would it all go away? Well, that mentality never works. Still, for a guy who lives to express himself, I’ve been remarkably close-mouthed on the subject.
And that’s a shame. It shouldn’t be a secret. For one, it’s a fact. My beloved boy has had major hurdles to overcome. He has performed heroically. He has more milestones that lay ahead, awaiting his arrival where they may or may not be toppled, but no matter what comes down the road, his feats should be celebrated. He’s proven himself stronger than his Dad ever has without ever really knowing it. He’s made the hard work look easy – at least to these watery eyes. And I couldn’t be more proud.
And thus I shout it from the rooftops. I’m proud of his accomplishments. If he can muster the strength to raise that voice and begin talking to people and begin playing with his peers and staying alongside them as they work through a rigorous curriculum that only grows more complex with each day they march towards the MCAS – all while dealing with the issues innate to his own personality that make the initial meet-and-greet such a mammoth challenge, than he should be celebrated. His strength lifts me up.
More importantly, I realize that this world is better off when populated by those who color outside the lines and veer off the beaten path. It’s the eccentricities that elevate us as a species. Textbooks try to deliver us to the box from which they sprung but it is human nature to resist classification. Colin may never be the standard definition of “a normal child” but he will flourish as the exceptional person he is… and will continually become.
So, one day, a few weeks back, I told Andi that all of this writing I’ve done of late had inspired me to someday collect my anecdotes into a book. I don’t know if there’s a market for that but it would be a nice project for me and something amazing to look back upon and page through years from now. The only thing I lacked was the connective tissue – a unifying theme.
And Andi said, “Why don’t you write about Colin?”
I replied, “I’ve thought of that – so many times over so many years – but I never felt it was my place. Is it fair to him?”
We left it at that but then I started turning it over in my head. Where years ago, I once spent my last moments of conscious thought keeping a very real truth confined to the cobwebs, I was now debating the exact antithesis of that. Should I bring this story forward and celebrate his life properly?
At six and a half years old, this is where Colin’s next chapter begins. And like every good story, I eagerly await each thrilling new installment.
It’s gonna’ be a helluva’ ride and I’ve got a front row seat. And I wouldn’t want to be anywhere else but here.