Forty for Forty – #8. Picking up the Pieces

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.

AUTISM!!!

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.

Comments now closed (42)

  • Ed –

    That was beautiful. You have such a talent for writing that it is amazing. The story brought me to tears – and that’s no easy feat. Both my brother and mother worked for the May Institute for a while in the 90’s and it has a lot of caring people that will help guide Colin in this journey.

    I wish you and your family all the best. I am sure with you and Andi as parents Colin will thrive! And BTW, you should absolutely write that book!

  • Thanks Dan!!!

    We actually don’t have any contact with the May Institute currently as their assessment prior to that enrollment in preschool was that a normal school curriculum coupled with the school specialists’ assistance would greatly aid Colin. They felt he was pretty far along the spectrum that their assistance wasn’t necessary.

    That said – I could tell through my interactions and research that they are an amazing group of people. And in our school we have found their awesome counterparts.

  • Ed, thank you so much for sharing such an important part of your life with us in such a beautiful way. You have an incredible talent as a writer and sharing your life experiences in a way that moves us all. Colin and Aria are incredibly lucky to have you as their dad. I wish your family all the best.

    Michele

  • I think on pretty much every post you have written about family, and more specifically the kids, I have left a comment that they are my favorites. This is my new favorite. I know it took a lot for you to pull this one together and that is without you ever having uttered a peep about it to me. I look forward to reading more and I believe that by sharing this with the world that good things shall come in return. So says Carson Daly via Earl Hickey.

  • @Michele – I’m glad you read and enjoyed the piece. When I opened shop here on this site a few years back, I hadn’t a clue how I was going to decorate it. One musty old anecdote lead to another and soon the family foibles were flowing. I know some people hem and haw about how much they want to reveal in public but personally, I think its liberating to tell these stories.

    So over the years this has grown to be a fairly dynamic digital scrapbook of our lives – and the various supporting characters that pop in and out on a recurring basis. And, I can’t help but think that years from now, when Colin and Aria are able to grasp these true life tales, they’ll uncover a pretty cool slice of their lives.

    That’s why I love posting these pieces (especially this one) and encouraging friends and family to Comment. You guys add your own personal tiles to the grand mosaic and I love that!!!

  • @Sean – I know you’ve always been a big fan of the family pieces and your encouragement each time out only drives me to reveal more truths. I can’t tell you how much that means to me – although, I guess I just did. : )

  • So honest, moving and thoughtful! I know that “don’t talk about it and it will go away” way of thinking…..been there done that. I related to your story so many ways…ways that brought me to tears!

    Thank you Ed! Sharing your story and Colin with us took courage and pride. Your pride and love for your family is weaved through out that piece into a beautiful tapestry spread out for us all to enjoy!

    Start working on that book so many more have the opportunity to enjoy your writing!

  • That was beautiful Ed! It’s great that you two had the courage to face it and start working on helping him improve. A family member of mine has a son who is very obviously autistic. They wouldn’t have him evaluated by early intervention or even do any type of testing. He is repeating kindergarten now and I’m afraid he is going to have a very hard time catching up because they just couldn’t admit there was any kind of problem. You guys are great parents! 🙂

  • You have brought tears to my eyes.
    As parents we can only hope to inspire our children toward a good life full of kindness and caring. We weep when they weep and laugh when they laugh and dread the day when they grow up and leave home.
    Colin and Aria are truly blessed to have such good parents and I am truly proud of all that you have done to ensure their happiness.
    Love,
    Mom

  • Ed, that was beautifully written. Colin and Aria are so lucky to have such wonderful parents, and I feel fortunate that you let us share in your own perspective, and so close into your lives. The most heartfelt thing I’ve read in a long time.

  • What a beautifully worded piece…I think other parents in similar situations would find strength and comfort in it! I hope you find a place to publish it where it can reach an audience that might find inspiration in your honesty and hope in your words.

    I have two autistic boys in my family, each on one end of the spectrum. Colin is very blessed to have you and Andi as his parents. I await the book-when I can say “I KNOW him!”. I’m gonna have Colin sign mine!

  • Welcome To Holland
    by
    Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

    * * *

    Your story made me smile as I can picture you embracing each challange as it comes as only YOU can! God bless you and your family as you continue on your journey!

  • ed, that was a wonderful write up!! i agree that colin and aria are two of the luckiest kids out there to have you and andi as parents! and i’m glad that bobby and i have the opportunity to parent along side of you guys!

  • What a wonderful story – you are great parents. I only wish my sister and her husband would read this – they went through the exact same thing and took the opposite approach – burying it rather than figuring out the issues. You are a very talented writer and Colin is lucky to have you for his dad!

  • @Sharon D. – Love the tapestry allusion and I think your comments – and everyone else who has stopped by for a spell to check this out – really add to the story.

    You’ve all applied your own stamp on something pretty special and I think that’s awesome. My goal is to keep this piece, and everything else I’ve written on this site about my friends and family, running for as long as the Internet lives on. It’s going to be pretty amazing to look back upon 20 years down the road – and I’ll look forward to sharing that future experience with Andi, Colin and Aria (and anyone else who may join us).

  • @Alissa – I definitely feel what your friends are going through. Like I said, I was hoping that by playing possum, all would be OK. But, inside that itch persists and after awhile, you really have to scratch it or it will drive you nuts. But, it’s a hard thing to do – to face the curveball tossed your way when you were hoping for a nice easy fastball that you can jack out of the park.

    Like I said – we’re fortunate with the support we’ve found in an awesome school and the amazing strides Colin has made. But, he’s where he is now due to recognition of the need to get that help.

    When i set out to write this, it really was no different than any other anecdote I’ve published here (albeit, I had to tone down my normal goofball asides). I just figured it was another tile that I owed the mosaic. And then when I actually started to write, it all came out – essentially writing itself. And where I’m prone to exaggerate for comedic effect on some of my pieces – this is all the way it really went down. The first time in a long time that I actually just told it like it is.

    As they say, honesty is the best policy – and apparently, it’s a nice tonic too.

  • @Mom – As blessed as they are to have good parents (geez – where’s my modesty), that is eclipsed by the unvbelievably caring grandparents Colin and Aria have.

    With all four parents remarried, my children have the luxury of laying claim to EIGHT grandparents – all of whom love and care for them deeply. Getting spoiled 8 times over is as they say on TV – Priceless!!!

    You guys are the best. You were for me when I was young and you’ve done that many times over for our children – and I can’t ever thank you enough.

  • @Aunt Sharon – Hopefully they are still teaching cursive when that book finally drops. You may have to settle for a text message autograph from him. It’s only a matter of time before he demands his own cell phone.

    That said – thanks for the kind words, the caring thoughts and always being a constant reader…

    You and Uncle Ron helped shape the kind of parent I became when we received that blessed news “It’s a Boy..”

  • @Jeanne, Sarah and Kim – Thanks for reading and for enjoying the piece. It’s my great pleasure to write this stuff (if only I could make money at it) and honestly – this site has been a great release where I invite y’all in to enjoy the travels and tribulations of our family. You’re all great friends and we really love having you in our life.

    And Sarah – Tell Bobby to finish that game so I can kill another few weeks of his productive time with the sequel. : )

  • @Denise – I had never encountered that passage ‘Welcome to Holland’ and now that I have, I marvel at how peotically she captured the feeling parent confront – regardless of the severity of the handicap. We have it easier than so many but as I mentioned, different than most too. And that feeling that somehow, life was interrupted, is palpable and real… and stings. But – you just need to look with better eyes to capture the beauty of your surroundings, no matter where your day led you.

    I really appreciate you posting that here. Simply put…

    Beautiful!!!

  • I expect the signature in cursive-and hopefully IN CRAYON!!

    And Colin can text me too!

  • Holland…..I know that story about Holland very well…..a physician I respect very, very much had a son born with Down Syndrome many, many years ago and he was told that story just after his son was born and he shared it in a book he wrote. He gave a copy of that book to a the parents of one of his patients (he ended up becoming a world reknown specialist in children with Down Syndrome) and they gave that sweet baby boy that for his middle name- Holland- so that they would be reminded to take joy in the place where they found themselves and the beautiful son they had been blessed with.

  • Ed, this is amazing! I think Andi is on to something! You paint such a wonderfully positive picture of Colin & his life! Being a teacher, I know of the difficulties inherent with this challenge. I think a lot of parents with similar challenges would do well to hear your story. I say get out the pen and start writing! Or should I say continue writing!!! You have a great gift! What a sin to waste it!

  • Eddie,
    This is a truly loving essay. I too had these fears when David was young. He did not talk until age 3. He was not the kid to simply join in with playgroups. He often stood and watched the fun. He never spoke to strangers (store clerks, my coworkers). As a special education teacher I see many of these behaviors everyday. We have several autism classrooms at my school. These children visibly display these antisocial behaviors as well as many others. I did not seek professional help for David because I thought it was just his personality. In this case I was right. He is now an honor student, the junior class treasurer at his school, plays football and lacrosse and has a great group of friends. It just turns out that he was not as outgoing as I am. He is still a quiet kid who doesn’t share his thoughts, we swear we won’t know he is getting married until one day he puts on a tuxedo.
    In my profession we see cyclical diagnosises. 10 years ago every child that acted out was considered bi-polar, 15 years ago everyone was dyslexic. I commend you both for not letting all the hype affect your raising of Colin. Its okay to be different. Knowing how bright you were as a child (I remember you reading the tv guide to see if Creature double Feature was on, before you were even in school)I’m sure Colin is an extremely bright normal boy, just like you and David were. He can’t help it if Newfie blood runs in his veins.

  • @Aunt Suzanne – My biggest hope is that Colin never has to experience the horror that is “the smell of frying kaplan wafting through the air in the early morning.” : )

    Thanks for the kind words… and as always, for being there and most importantly – for applying decals to my Transformers all those years ago. : )

  • Thank you so much for sharing this story. So much of it hits home with us. I felt like I was reading a slightly different version of my own story. Love you guys!!!xoxoxo

  • Ed,

    Wonderfully written and a tribute to lucky Colin is to have you and Andi as parents.

  • Ed, this is a very moving piece. I think you made the right decision to write it and Colin and Aria are very lucky to have you and Andi as parents.

  • Hey Eddie, I just read picking up the pieces. I as a mom have noticed different signs and I as a sister have never wanted to verbalize what I thought. I love you so much and am so happy that my nephew has the most amazing parents in the world. I always knew you were special, and am happy to admit that my son Eric is so much like you. Colin is great!!! He is intelligent and has you and Aria as parents. I often tell my son how much he reminds me of you. You are who I want my son to be. I am so proud of you!I like mom am a little emotional. After reading this I’ve had a hard time pulling myself together.You and Andrea are the bst people I know to deal with situation. You both value family and love. I know you Colin will thrive with you both as parents.

  • I meant to put you and Andrea as parents. Andrea, I think you are an awesome mom and my kids firmly agree. They even noticed how attentive and involved with the kids you are. I must have had Aria on my mind when I wrote this.Eddie and Andria hope you come visit soon. Kids love pools, so it would be a nice cheap vaca if your interested this summer.Love, Jenna

  • @Jenna – Glad you read this and really appreciate all of the kind words. I was telling Mom after I wrote it that she and Dad should pat themselves on their backs as they raised three pretty good kids who have gone on to become pretty great people (yeah – I’ll pat myself on the back too).

    The point is – I think you and Eric have done an awesome job in raising Eric and MaKenna. Your a model for us and I really mean that. You couldn’t find two better kids who have such great strengths and talents and that’s a tribute to you and Eric – and to them too. Hard work by all involved and it really pays off for the world – as we get the opportunity to know such awesome people.

    As for the vacation destination, we would love to take you up on that. It’s been too long for one thing and the way this year is shaping up – a cheaper vacation is definitely the way to go for us. So, we need to make those plans this summer. Let me know a good time and let’s schedule it soon.

    -Eddie

  • Hi Ed,

    I met you,your wife & children over at Jenna’s house a few years ago. I’m a friend & neighbor of Jenna’s.
    This was such a heartfelt, honest and beautifully written piece.
    You have such a gift, please write that book.

  • @Casey,

    Thanks for reading this piece and for the encouragement to keep writing. I really appreciate the kind words and agree that if I owe anyone – it’s to myself to carve some time and jot it all down. Even if I never sell one book at least it will be something nice to pass along to friends and family.

    I think we’re going to make it down there again this summer so we’ll look forward to seeing you again.

    Thanks again!!!

  • I just spent some time reading this and it is quite an emotional roller coaster! Colin is very lucky to have you as a Dad!

    I’ve heard that Welcome to Holland story before, and it really does sum up what it’s like. I used to work at a summer camp for children with special needs, and it really opened my eyes. As a young kid in school I remember leaving the classroom a lot to go see specialists and such, I never really did find out why. I should probably ask my mother about that. Someday when he’s old enough, I’m sure Colin will enjoy reading this, and not only give an insight to what he was like when he was a kid, but also how loving his dad was.

    -Chris

  • @Chris – Thanks for reading the piece and more importantly, for sharing your personal perspective too.

    One of the great things about this Blog (and Jason a.k.a. Poe really nailed it when he described it as such) is that it is a “digital scrapbook” of sorts. Sure, you can get your Lost, movie or video game fix here – as well as countless humorous anecdotes from my so called life – but then there are these pieces which I feel real proud to have decorating the walls… and not just because of what I wrote.

    All of you guys add to the mosaic… and when Colin (and his sister Aria) pour through these pages some day, I think they’ll come away completely bowled over at the level of interaction, care and compassion people had in watching them grow vicariously through their Dad’s words.

    So you guys are really helping to make something special and I truly appreciate that.

    -Ed

  • Ed, don’t know you well, but surely didn’t know you were such a talented writer. I loved how you shared the story of your son. You warmed my heart as I read it. I am sure that it would encourage many other parents who might have to deal with any kind of “differences” with their children. Your kids are blessed to have you as a parent.

  • Mary – Thanks for the kind words. I’m sure by the time May 15th rolls around we’ll be longtime friends. : )

    I really appreciate you sharing your thoughts. It means a lot.