Today is the conclusion of the creative nonfiction short story "This House" by my best writer friend, Linda Davis. Her bio appears at the end. Enjoy!
The Romanies do not step on ants or destroy a colony of them, because they believe a nest close to home is a sign of future wealth
Europeans think Americans are obsessed with happiness. In “Something for Nothing,” Jackson Lears says, “A providential sense of destiny could be expanded from individuals to groups and ultimately to nations – and to none more easily than the United States. Prosperity itself came to seem a sign of God’s blessing.” (Lears, 3.)
A lifetime of good fortune had ill-prepared me for the challenges of hard luck. My internal mantra had changed from Someone has to win, why not me? to Why did this have to happen to me?? Sadness was only outdone by a profound sense of self-pity.
I became careless.
The year after Noel was diagnosed, I had three car accidents, lost my wallet twice and left things everywhere. I stopped wearing a seatbelt. Got sick every six weeks. The cats went from pampered bliss to barely being fed. I even got some satisfaction from drowning with Ajax the perennial parade of ants that made its way into our home sometime around Labor Day. For a lifelong vegetarian who routinely picked up strays, and removed bugs found in the house to a safe spot outdoors, this was an extreme shift. Blanca, our El Salvadorian nanny, spoke very poor English, so I stopped talking to her. It was too much effort. On weekends, when Blanca wasn’t there to tend to household chores, it was difficult to tell we had hardwood floors, since virtually every square foot was littered with toys, clothes and miscellaneous household debris.
One of my accidents took place on Mother’s Day, which I can only assume was directly related to my dismay that the day went largely ignored by George. I thought perhaps he too had become careless, until he eventually wished me a lackluster “Happy Mother’s Day.” Having my husband barely acknowledge me on Mother’s Day wasn’t the real problem. I felt invisible to him. Or rather, more like his assistant. His frequent phone calls to check on how Noel was doing, his demands to know specifics of every report, at the same time he was unwilling to hear bad news.
“He didn’t too well,” I would say.
“But he did okay, right?” He’d insist.
Worse was his utter resentment of any time I took for myself. “You don’t have your writing class tonight, do you?” He’d say every week. My answer was always the same. “Yes, I have it today as I have every Tuesday for the last two years.” When he questioned me on anything, I sulked, believing, because I was in crisis mode, I was beyond reproach.
I put up walls.
While it’s true that all parents give up part of their lives for their children, when you have a child that is Autistic, you give up your dreams too. Wondering if your child will be a good student, maybe an athlete or an artist, whether he’ll marry and give you grandkids, becomes meaningless. Now, the only goal is for him to be “normal.”
The repetitive hand motion that had been the alarm clock for his Autism is called perseverating, or “stimming” and most kids with Autism do it in one form or another. In “The Child with Special Needs,” writers Stanley Greenspan, M.D. and Sernea Wieder, P.h.D. say, “This behavior is often an attempt to compensate for sensory underactivity, to seek extra sensation in order to register input.” Some stim with their eyes, intensely tracking an object up and down; many flap their hands. Oftentimes, stimming is accompanied by some bizarre vocalization, for the more severe, it can be a yell. Some stims incorporate eyes, hands and voice. (Greenspan, Wieder, 150.)
As difficult as it was to diagnose Noel, a year after his diagnosis, there was no mistaking him for a typical child. He didn’t play with other children, he spoke in one-word sentences, he had a chronic sinus infection that caused green snot to spew from his nose every eight weeks or so, he barely ate, never interacted with his brother Julian, and stimmed for long periods of the day.
In an age when it’s hard to differentiate between schizophrenics, actors rehearsing lines and cell phone users on the street, you’d think society would be willing to turn a blind eye to a small child with a nervous tic. But as Nathaniel Hawthorne said, “Men of cold passions have quick eyes.” As much as I know that it’s human nature, friends acted oddly around Noel. Clusters of parents speaking in lowered voices to one another were the norm whenever we were at social engagements. A blaring announcement on a megaphone couldn’t have made the topic of their discussion more obvious.
Even when a friend was exceptionally nice to Noel, I’d end up feeling bad. They’d asked Noel twenty questions, not knowing that answering questions is the biggest hurdle of all for someone with Autism. Like enemies outside a stone fortress wall, words seem impenetrable to the Autistic brain. If he happened to answer a few questions, they’d praise his progress. If he didn’t answer at all, they’d say nothing. While the praise felt patronizing, the lack of it was worse.
As Julian got older, the differences between him and Noel became more pronounced. Not only did we have one child that was typical, and another neurotypical, in almost every aspect of their personalities, they were different. Julian liked play, Noel was incapable of it. Julian talked non-stop, Noel spoke very little. Julian loved interacting with his friends, Noel only interacted with adults. Being alone with the two of them was a challenge since they both had very different ideas of how they wanted to spend their time. I often felt like I had twins in the physical sense: having to carry them both, changing diapers (Noel still wasn’t potty trained), dressing and doing everything one does for toddlers. But the bond that twins share, or even brothers, was missing from their relationship. In the playground, I’d sprint back and forth from the monkey bars, where Julian was, to the outskirts of the playground, where Noel was fixated on the wheels of the assorted baby strollers. On the rare occasion when they agreed to the same activity – like going on the swings – inevitably, I’d encounter some other obstacle, like not being able to get two swings in a row. The other mothers somehow missed the desperate, maniacal look on my face. Many times, I failed to bridge the divide between their worlds.
It took me a while to realize that whenever I was having a really bad day, it was always related to how Noel was doing. The slightest negative report would leave me in a funk. The hardest times were those when he would do poorly for weeks at a time. Keeping up appearances was about the only thing I had energy for. The reality of our lives was much different than the facade. Some days, my heart felt so heavy, the extra weight made it hard to lift my feet.
I turned to my no-fail system of coping with a problem: acquiring knowledge through reading. Therapists or doctors would recommend that I read this article or that book, saying, “This person is amazing! You’ll feel better after you read this.” I dutifully would track down said book or article, expecting to feel consoled, inspired, hopeful. Wrong. The more I read about people with Autism, the more depressed I became. I took little comfort in reading that Temple Grandin comforted herself with a self-invented squeeze machine, or that Autistic persons had to relearn driving every time they got behind the wheel. Most people with Autism don’t drive. (www.parentpals.com.)
In “The Child with Special Needs,” Autistic persons are described in this way:
Some children with Autistic spectrum disorders are also labeled mentally retarded because many of the component skills are severely affected. Other children are considered Autistic but have unusual abilities. They may be able to memorize whole books or carry out certain mathematical operations, they may even be precocious in some areas, such as reading – but they can’t connect intent or emotion to these component parts and thus give purpose and meaning to the way they function. (Greenspan, Wieder, 342.)
For the first time in my life, reading failed me.
Bad luck has a way of following bad. The worst day post-diagnosis occurred on a sunny Thursday morning, when George and I had an appointment with Noel’s occupational therapist, Ms. G. Of all the professionals who worked with Noel, we trusted her opinion the most. We expected she was going to discuss his good progress, since he’d had positive reports of late, or maybe a conversation about kindergarten, just four months away.
George always begins appointments with small banter, a sign of what a true optimist he is. I, on the other hand, sit tensed, feeling the shoes on my feet, and with my hands, the surface of the table in front of me. Mindful of the bad news she’s about to deliver, thankfully, Ms. G. doesn’t let George go on forever. She interrupts him, leans forward looking from George to me and says, “I have to tell you, I think there’s some M.R.”
“70% of children with Autism have some mental retardation.” (Children with Autism: Parent’s Guide.)
The sad truth about diagnosing a child with a developmental delay is that immediately, you see them differently. They’re no longer your beautiful baby who delights you with the slightest action or expression. A lot of the time, the label is all you see.
When Noel was diagnosed with Autism, I had to fall in love with him again. When Ms. G. labeled him as having some mental retardation, I had to do it all over again.
Falling in love isn’t easy for those whose emotions have been deadened. One way to learn to love again is through the eyes of others. Admittedly, this is corny stuff. But when you are in crisis, it’s surprising how useful clichés become.
I have never met another father more in love and more involved with his children than George. Through all our trials and tribulations, he has worked tirelessly to help Noel. Other fathers of children with special needs do a fraction of what he does, if they stick around at all. I wish I could accurately describe the way George’s eyes light up when Noel walks into the room, but you’ll just have to trust me. And then there’s Julian. For all their differences, Julian is Noel’s fiercest protector. When we were in New York waiting for the subways, Julian stood by Noel, to make sure he stayed clear of the tracks and got off and on the train in time. When he’s around new friends, Julian puts his arm around Noel and says with great pride, “He’s my brother!” And Noel’s relationship with my mother is something very special. Sometimes when I’m having a hard day, I think of my mother’s love for Noel and feel better. He is, simply put, the light of her life.
Luckily, Ms. G’s diagnosis was proved wrong. And Noel isn’t hard to love. Through the years, the roof of our expectations for Noel has slowly been raised. Occasionally, we get a glimpse of the sky. Turns out, he really is answering all the questions asked him, just inside his head.
There’s a poetry to Noel’s Autism: the way he sees mathematical patterns in his head; memorizes the birthday of every person he’s ever met; learned to read by reading street signs and bus schedules; his undeniable need to touch someone when he sleeps; the enthusiastic way he greets people he knows; his love for babies and sleeping people; his intense love of being immersed in any body of water: be it bath or ocean; his adorable little face, framed with a haircut Paul McCartney would envy and cheeks sun-kissed with freckles; his adventurous spirit for travel and trying new things; his unrestrained belly laugh at slapstick; the little hop dances he does that makes his bangs bob up and down; the way he pretends he knows the words to songs and sing/hums along regardless; and most of all, his boundless love for family.
Sure, I’m worried about the day when Noel hits adolescence. Behaviors that were cute and different in a baby somehow become weird and menacing in an adolescent. Hopefully, love will see us through, as it has thus far.
Some say children with special needs are closer to God. Others say the misfortune we have in this life is retribution from the last. While I would never say I feel lucky to have a child with special needs, I will say – as many who’ve met Noel have echoed – if there is such a thing as angels among us, Noel is certainly one of them. And that must be lucky.
* *** *
BIO: The Literary Review published Linda Davis’ story “The True Definition of Fat” in their winter/09 issue. She has also been a finalist in both Glimmer Train and New Millennium writing contests’. She worked with Antonya Nelson at Bread Loaf and Leonard Chang and Brad Kessler at Antioch University where she received her MFA in 2007. Prior to that, she was story editor at Wildwood Enterprises, Robert Redford’s company and worked in New York at Harper’s Magazine with Lewis Lapham. Linda is seeking the right representation for her recently completed novel, A Kiss Means Thank You. She lives in Santa Monica with her husband and three children.