Submitted to us by Lucy Cellucci, a local writer of young adult fiction. Thank you Lucy for getting involved with our project!
“Do you think there’s something wrong with him?”
If I had a loonie for every time my husband or I began a conversation with each other that way, I’d have a collection of change plentiful enough to keep every mechanical bull in Texas operating consecutively for six months.
Jayden Giovanni Cellucci came into this world like a hurricane, via emergency C-section, in the wee hours of the morning on October 31st, 2005.
As a newborn, he was quite calm…angelic, in fact. He slept well and gave me three- to five-hour stretches in between nightly feedings. But around three months of age, my quiet, sleepy little baby decided to wake up and make his presence well known to all those around him.
Jayden had adopted the mindset that “Sleep was for the weak.” And he swiftly put into place a program to help me overcome my dependency on the Sandman. After all, if he could get by with forty minutes here and there during the day, why couldn’t I? What could I possibly have going on in my life that would require me to need any more rest than that? I began traipsing into his room at all hours of the night to nurse my fussy baby back to sleep, only to have him wake up an hour later and repeat the whole process again, and again, and again.
“But he wouldn’t be crying throughout the night like this if he were okay, would he?” I asked his doctor after three months of being the sole employee at the 24-hour, all-you-can-drink dairy bar. “Do you think there’s something wrong with him?”
I didn’t know it at the time, but it would be another five years before my over-stimulated baby would quit seeking my counsel between the hours of midnight and six a.m. When he was finished with nursing, I assumed it was teething that kept him up at night, and when all this teeth had come in, I blamed his new bathing suit with the blue fish for keeping him up…why else did he feel the need to constantly open his drawer and check on it in the wee hours? And that is to say nothing of the wonderful night when he appeared at my bedside at two in the morning, full of urgency to inform me that Jack White, lead singer of the rock band The White Stripes, was a “really busy guy” because not only did he sing and play guitar in his own band, he also performed in The Raconteurs, and now, a new band, The Dead Weather.
As Jayden grew into his toddler years, he developed a peculiar attachment to Mason jar lids. Some people use these lids with the screw-on rings to seal jarred preserves and homemade jams…not at our house. They were our son’s toys. Around eighteen months he began to acquire a collection of lids which he would spin for long periods of time. Sometime after his second birthday, he began arranging them into patterns and gingerly walked around his creations, muttering words that were incomprehensible to the rest of us. He even began taking his Mason jar lids to bed, tucking them tenderly under the covers for safekeeping.
Also, around this time, Jayden started to take an immense interest in sewers. To be honest, the word interest does not accurately reflect the level of enthusiasm my son held for these conduits of city infrastructure. Obsession would, in fact, be the better choice of nouns.
Jayden’s grand pre-occupation with sewers interfered in many aspects of his life. As a three-year-old, it made it impossible for him to learn to ride a tricycle. We couldn’t pass more than two feet of road without him jumping off his trike to run and stand on top of a manhole cover and yell, “WOW…S-E-W-Y!!!!!!!!!!”
During the winter, he would stand in front of his bedroom window, watching with mounting anxiety as his precious “sewies” were covered with a blanket of thick snow. This, in turn, led to a full blown search-and-rescue mission the next time we left the house. He would run out onto the road, drop to his knees and begin to dig out the manhole covers from beneath their snowy graves. Any attempt we made to prevent him from doing so always resulted in a meltdown.
When the weather got warmer, excursions to the park quickly morphed into “sewer-feeding” sessions. Jayden even began to refer to himself as a “Sewer Feeder.” This was, in fact, his opening line to break the ice with his pals from nursery school: “Hi, my name is Jayden. I’m a sewer feeder. Join me.”
“Do you think there’s something wrong with him?” I asked his nursery school teacher during an interview. My question was quickly dismissed. My son had efficiently charmed his teacher with lengthy discussions on the different types of sewers, explanations on how water drains from the sink, and visual demonstrations incorporating a full bucket of water, on the theory of displacement. Displacement? What the Sam Hill was going on here? This, coupled with the fact that Jayden was capable of counting to one hundred at the ripe old age of three-and-a-half, had endeared my son to his teacher in a most captivating manner.
“Oh, gosh , no…there’s nothing wrong with him,” she gushed. “In fact, you and your husband should start saving your money…that boy’s going to MIT someday!”
By the time Jayden had started kindergarten, I had resigned myself to the fact that I was the parent of a headstrong, bright and precocious child…nothing more. So, you can imagine how less than thrilled I was when his teacher came to me with a list of what she deemed “unusual behaviors” and seemed to think there might be cause for concern.
What? I thought when she first approached me. What do you mean you think there’s something wrong with him? Didn’t you get the memo…he’s going to MIT! But after I had a chance to get over myself and take my faulty defensive wiring offline for a few days, I sat down and made my own list. And what I came face to face with was a child who was obsessed with sewers, traffic lights, and street lamps to the point of such distraction that he could barely focus on anything else. He slept poorly due to his constantly racing mind, had difficulty articulating his speech, and could not, for the life of him, interpret facial expressions or tones of voice. In fact, a voice raised in anger at him often produced excitement and fits of laughter. He was given to bouts of hyperactive behavior (even without sugar), inappropriate outbursts, and meltdowns occurred often throughout his day, usually as the result of having to transition activities.
On paper, the truth was irrefutable…something was indeed wrong. And though my little boy was not without his charms, I could no longer deny the fact that we were just a couple sombreros short a mariachi band.
So, I packed up all the lists and set out on a quest to find an answer to my burning question. For the next eighteen months we submerged ourselves into the purgatory of seeking a diagnosis for my son’s puzzling behaviors. We saw a pediatrician who specializes in behavioral issues, who then referred us to a child psychologist, who then referred us to a pediatric neuro-psychologist.
Anyone who has taken this journey with their child can attest to the disturbing feelings that arise when the oceans of anxiety begin to churn in your gut. You sit in waiting rooms with signs that read “Mental Health Outpatient Unit” and you gaze at the brightly painted pictures on the walls, and play with plastic blocks and dinosaurs, all the while quietly wondering what the future will have in store for your family. Two weeks before Jayden’s sixth birthday, the jury finally returned with a verdict.
“Our test results firmly support a diagnosis of autism,” the neuro-psychologist at the CHEO calmly informed us.
For me, these words resulted in both tremendous relief, and sadness. However, the more I learned of this disorder, the more encouraged I began to feel. Autism is, due in part to its broad spectrum, widely misunderstood. Most of us conjure up the image of Dustin Hoffman in the movie Rainman when we hear about someone having autism. I have to admit that I, too, had trouble digesting my long-awaited answer. The day we did our ADOS testing, we waited in a room with children who rocked back and forth in their seats, staring vacantly into space. There’s no way this is us, I thought confidently.
But autism is a broad spectrum neurological disorder that causes developmental impairments in the realms of communication and social function. Individuals with autism spectrum disorders (ASD) may appear to have no interest in other people or no idea how to appropriately engage with others. They can be intensely preoccupied with odd interests and subject matter (ahem…have I mentioned the “birthday sewers” that get drawn on birthday cards around here?). They can be lively and hyper, displaying odd, ritualistic-like behavior, or appear positively catatonic. And often, they may appear almost “gifted” in one area. My son, for example, is displaying a keen aptitude for math. At five years and ten months of age, he scored at a grade three level for his understanding of geometry. This is evident in the fantastic drawings he creates of city landscapes and infrastructure that are now beginning to incorporate two-point perspective and three dimensional buildings.
The truly interesting thing about this disorder is that no two individuals with autism will present with exactly the same symptoms. Fortunately for my boy, he falls at the high-functioning end this bizarre continuum…encouraging news indeed for his future. To the untrained eye, he appears to be nothing more than a loud and lively young lad who is content to draw pictures of cityscapes or build them out of Lego for long stretches of time. I am convinced he is destined to one day put his brilliant little mind to work as a civil engineer (perhaps he will be able to help the City of Ottawa solve the conundrum of the light-rail-train-to-nowhere).
My concerns for him are not so much in the realm of whether or not he will ever graduate from high school, or be able to secure gainful employment at some point in his life, but whether or not he will ever be able to interpret the ebb and flow of social interactions, and have the ability to form lasting relationships in his life. I see how some of the kids at the playground are beginning to look at him, and part of me wants to wrap my arms around him and turn back the clock to the first night I brought him home from the hospital. I lay in my bed with him on my chest, inhaling that intoxicating new-baby scent from the top of his head, promising to give him a wonderful life—a promise that may be infinitely more difficult to keep than I had originally anticipated.
So now we move on to phase two of our journey. Once again we are waiting—this time for the support Jayden will need to give him the tools to function successfully in all areas of his life. Our immediate focus will be speech therapy to improve his verbal communication skills, and behavioral therapy to give him (and us) the tools necessary to regulate his emotions, which will hopefully better help ease him into transitions and result in fewer meltdowns.
In the one hundred days since we’ve received our diagnosis, I have become increasingly encouraged about the future, and better yet, calmer about the present. And as a smart friend of mine recently pointed out, a labeled diagnosis doesn’t change the fact that I have a great kid.
I find myself clinging to this comforting thought on the days when I feel consumed by his challenges, and the anxieties they stir for what lies ahead for him. I know that the day will soon come when I will no longer be able to cheer him up with a drive to Starbucks for a cakepop, and a sewer-walk. His problems will be far more complex. But for now, I have time…time to learn, time to teach, time to breathe. And for now, I am choosing to focus on what is right in our lives, instead of what is wrong.
Lace up your shoes, Sewer Feeder…we’re going for a walk 😉