The Journey

She pressed her fingertips together, hesitating, with the demeanor of one who is far too familiar with delivering bad news to others, her eyes lowered to a haphazard stack of papers that may or may not have had anything to do with us.  My husband and I sat opposite her at her desk, hanging on her every word. When she spoke again, she spoke words that changed our lives forever. What did it mean that our son probably had a place on the spectrum? The “spectrum” sounded like an airy, whimsical place where all might be sunshine and daisies. The scream and shuffling from the other side of the office door confirmed that was not the case. Of course, she added quickly, she didn’t have the ability to diagnose him, but she had seen hundreds, nay, thousands of children just like ours, and he fit the description.

Are you okay, she asked quietly and genuinely, leaning forward to peer over the top of her eyeglasses. A lump had formed firmly in my throat, and my eyes had moistened instantaneously. The voice of the child psychologist we had seen several weeks ago echoed in my ears, promising us hectic years to come should we choose to pursue finding help. Hectic but rewarding, he had promised in not so many words.

I looked quickly to my husband, who smiled weakly and perhaps tried to utter a shaky response, I don’t know. I turned away from him to try to regain my composure. What this translated to was that I was becoming lost in self-despair imagining my next few years saturated in driving, endless appointments, and medical bills beyond my wildest dreams. This moment was born and bred for self pity, it couldn’t be helped.

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I felt my eyes inadvertently widen as we entered the large, yellow room. Most of the floors and walls were covered with padding. There were pulleys and ropes anchored to the ceiling, resembling what I could only imagine a modern-day torture chamber may look like. Nearby a child flashed an awkward and toothless grin at me and said “hello”, prompted by a woman shuffling through a binder. He wore large headphones on his ears, fastened in place with a sweatband. His legs and arms were wrapped in ACE bandages, as if at any moment Richard Simmons might walk through that door and lead him through a rousing bit of “Sweatin’ to the Oldies”. I had officially entered a brand new world.

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There it was again. I groaned inwardly, wishing I could just bury my head under a pillow and pretend that I didn’t hear it. A loud, rhythmic impact to his door, followed and covered and criss-crossed, and, please God, make it stop, by ear-splitting shrieks. Maybe I had been sleeping for half an hour, perhaps an hour—my eyes couldn’t focus on the clock even with the aid of the blue light from the baby’s nightlight. My husband was still at work, plugging away at what had to be another one of the twenty-hour days that were becoming all-too frequent in his line of work. So it’s my turn by default.

When I reach the door, it is still quaking and threatening to splinter in an undertone to the commotion behind. He is there, hovering behind the door, with surprisingly dry eyes despite the fact that a messy homicide possibly could have taken place with less noise and much less dramatics. Already I can see that his forehead is dark in the old familiar place. His eyebrows are furrowed as he whines and attempts to push past me with his shoulders into the hallway. I push him backward with a hand, and sit down in front of the door, asking him to please, please, please! lay down and go to sleep. He wails, and, because I am blocking the door, decides that the wall is a viable alternative.

He bangs his head on the wall, a sickening noise for anyone who has been privileged to hear it often enough to make it an hourly occurrence. Sometimes it was a somewhat sedate clunk against a vertical or horizontal surface, depending on if he had thrown himself to the floor in a tantrum. At other times, it was a frenetic, arm-flailing, eyes-closed, full-out run into the wall head-first. Either situation should never, ever happen. I have long since grown tired of explaining the perpetual bruise to strangers, who certainly must think secretly I am beating my child for his obvious lack of manners.

I choose to carry him to my room so he can lay by my side and rest. Which he does for approximately as long as it takes for his head to hit the pillow, then he immediately sits up in bed, revived. I fall into a restless sleep, subconsciously aware that he is pacing three sides of a table nearby, studying it with first one eye, then the next, all the while cooing in his own unique way, over and over. When I pry open my heavy eyes again, he is staring at me, his dark eyes glowing in the dim light cast by the nightlight. He has turned away from me and is doing an odd, repetitive jerking motion with his upper body, stooping forward a little, then snapping upright, all the while cooing and occasionally turning his head to focus on me. I am scared.

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His haircut is cute and close-cropped, showing off the deepness of his eyes. We are sitting at a booth in the restaurant, fawning over him and discussing how his lack of hair really makes him appear so much older. He is looking out of the corner of his eye at something in his line of periphery. And then he keeps looking, turning his head in the opposite direction while still looking out the corner of his eye. We laugh because we don’t know it’s not funny. And then he does it the other way.

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The room is dark, the large window providing the only light. The chairs try hard to be comfortable and accommodating, but I shift and yawn and wish I was curled up in bed instead. We stare at them as we might tropical fish in a large tank. Just like those fish, we are unable to do much to affect their movements, their motions, but we continue watching and waiting for a single moment in time when we might experience wonder.

He is beside me, playing with a container full of small plastic animals the therapist has given him to help pass the time. I try to tune him out, as it is difficult to hear conversation over him. He has given to laughing and coaching his brother through the glass as of late

I feel a light touch on my arm, and turn to look at him. He is holding a plastic gorilla on my arm and smiling slyly, those liquid eyes swimming in the light from the other room.
Huntie, what is that, he asks, looking to me to repeat the question so he may enlighten me.

What is that, I ask quietly, smiling at his playfulness as the gorilla remains on my arm until I ask the question.

It’s a monkey… on shoulder, he states plainly, surprising me because I didn’t know he knew the word “shoulder”.

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A small crowd has gathered, and we willingly place him on display like a sideshow act, or maybe, just maybe, like parents do when their children do something adorable that the whole world needs to know about and bear witness to: A child learning to shake a diapered behind to a beat, taking a precarious step, some milestone… Something altogether more normal, more right, than what we are showcasing.

The tip of the Sharpie marker is suspended over nothingness, placed with the utmost care by chubby yet dexterous hands and the precision afforded by eagle eyes. Everyone’s attention is fixated entirely on him, and he seems to notice none of it as he works. He has moved on to place another marker on the edge of the desk, tip over the edge the very same amount as the one before, and the one before that, and the one before that.

A devious giggle escapes from someone who has decided to disrupt the process by moving the markers from position. It is meant to amuse us only, because the panic he is stricken with as he tries to make it right again, as he tries to reorder the chaos in his life, cannot and will not ever be amusing to him.

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The voice on the other end falters, hesitating a little before she blurts out that she doesn’t know what that diagnosis means. When she tries to pronounce it, it sounds a little bit like sensory disintegration dysfunction, which I can only imagine would assuredly be a pity to behold. I let out a slow, even breath, trying to hide my agitation at this young girl—and, more distinctly, the company she works for. No, no, it’s sensory integration dysfunction, and would the diagnosis codes I have here help? She jots the codes down in my paperwork and promises we will hear back from someone soon.

And we do.

A big, fat packet of papers arrives in the mail several days later, congratulating us, announcing to the world that we have been accepted for coverage by their fabulous company. What a wise choice we made! How easy it was to get excited and skip over the smaller print that informs us we will pay more because I am obese and my husband has mysterious health issues. With no word or inkling of any apology for the inconvenience, they inform us that our child is not covered at all. Thank you, and have a very nice day.

As I speak with Customer Service, I ask them, with some measure of disbelief, what this means, even though I am a bright person who can read and interpret for herself what seems to be very straightforward. My mind is not grasping it all: How can a child who is in many ways so normal not be granted even the most basic of medical care?

I find I am not above begging and pleading, just a little bit, as I barrage the Customer Service agent with questions leaping out of a very distressed and positively aching place in my heart. So what you’re telling me is that even if I promised to never, ever submit a claim pertaining to do with his delays and subsequent therapy, he still would not be granted coverage? She assures me what I’m saying is her company’s stance, and we part ways.

I’m not sure how long I cried, tired and angry and hurt and frustrated. Not only am I upset for my child, I am upset for what the thousands of families who are presented with this situation every day. The insurance company in essence, says my child is a liability, a loss, someone in whom it is not fiscally advantageous for them to invest. They are grabbing my son’s shoulders, spinning him about-face, and pushing him out the open door, only to slam it in his bewildered face. It is your problem, they mumble from the other side of the door. We wish we could help now, really we do, but maybe you should return when he is an adult and what we could have helped you change as a child cannot be reversed. The struggles he will face in school are not our concern—isn’t that what the school system is for, after all?

No, and no, and NO! It cannot be!

I curse the insurance company. I curse money. I curse my husband for leaving employment where the health coverage was not at all perfect but was one of a small handful of companies that did pay a percentage eventually. I curse myself for not knowing that I was going to have such difficulties procuring new insurance. Suddenly, the move from a job that assured us that Daddy was just a paycheck and quite possibly a figment of our imaginations felt like a huge failure in our strategy to live happily ever after.

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My face glows red, and I start feeling condescending, inconvenienced eyes focusing, one by one, upon me, upon him. He is beside me, tossing and turning, screaming and screeching, occasionally surprising or hurting me by grazing my face with a limb. My bag of tricks is empty, torn to pieces, stomped into dust, and he is still making a scene worthy of an Oscar. Thank heavens no one has had the gall to walk up to us and make a snide comment, for there would be no stopping my tears.

I am tired, but no one ever asks if I am tired. Naptime for the children is the closest thing to liquid gold I have, yet it does not come often enough or coincide nearly enough to give me the time to recharge my batteries. When all seems well and children are resting, I find that, all too often, I must wake them up to pick up my eldest from school. Or perhaps children from the neighborhood come over to play and cause such a commotion that sleeping children arise too soon. There is little question in my mind that I am known as the grumpy lady on our street, and as much as I wish it weren’t so, I have little control over my emotions to be anyone different. I am tired of being compared to others in my family who are also struggling. I am tired of being told that God only gives us as much as we can handle. I am tired of being told that with great privilege there comes great responsibility.

All I want at this very moment is a sedate breakfast with my mother. I have stopped hoping that maybe he will eat this time.

The waitress brings us a children’s menu, the kind printed on a disposable placemat, and a small pack of crayons. He should be the age where coloring sparks some interest, but the effort to hold the crayon at all, no less with an effective grasp, is difficult and he has stopped attempting it long ago. Instead, he yells, eyes focused on the crayons, which I am thankful for. Often his cries are not accompanied by cues that let someone know what he wants, leaving that person to play a frantic game of Is this what you want? until he stops his tantrum.

The crayons are unwrapped and placed before him, where he grabs them quickly and begins his work. With the poise and precision of a surgeon, he places the first crayon on the table. It stands, now, balancing on the flat end, pointed end up like a colored picket fence. His hands move carefully away as to not ruin his masterpiece, fingers splayed outwards as he makes his cautious retreat. This calculated process plays over and over as crayon number two, crayon number three, and crayon number four all find their places in line.

My mother grabs another pack of crayons as he is working, and places them in front of him. He continues in relative silence, save for the ever-present coo that means he is ordering his world and trying to forget he is part of ours. With all eight crayons in formation, he is eyeing them with more wonder than pride. I am not sure whether I should be scared or amused or something else altogether, but I manage to squeak out a teary, weak giggle.

I’ve never seen anything like that, my mother says breathlessly.

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Several years have passed since the difficult start of our journey.  You are still the same boy you always were, tender-hearted and passionate.  Though your body is beginning to stretch and change, you still watch and absorb all around you with those liquid brown eyes the size of dinner plates.  Nothing melts your heart quicker than a baby.  You're a horse whisperer in search of a horse to listen.  As much as it pains me, literally, you are especially gifted at building amazing things out of Legos--if only your talent extended to picking them up when you were finished.  Most of the time, your best friends are your brothers, but you hold a special bond with a sweet little classmate who has loved you from the very start.  

Besides the gift of having you as my son, besides learning how to float along in life when circumstances threatened to drag me under, you reignited my spark.  With all of the struggles we went through, I had to write to make sense of everything.  Writing reminded me of where we began, and gave me hope that our story would grow into something so much better.  Words still aren't your thing.  But I like to think you gave most of your words to me so I would have more.

Thank you for being my sweet bean.  If I could go back, I would take away all the hard, all the sad, all the obstacles that you will face day after day.  All of that I would gladly lift from you and place upon myself, if only I could.... but I would never change you.  I love you.