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Entries in autism (4)

Wednesday
Jul132011

Writers on Wednesday -- Lori Odhner

Though this piece was scheduled before my husband ended up in the hospital, I can't think of a better writer to feature today than Lori, whose essay (and life work) highlights the incredibly generous spirit of the small town we share and her commitment to marriage and family. 

 

I watched the real life drama of this piece unfold last week: Lori's son Ben, a sweet-hearted, big-eyed boy who is on the autism spectrum went missing. The town rallied and I will promise you ahead of time, this story has a happy ending. I teared up when I read her piece on the experience and immediately asked Lori if I could run this.

 

I wanted to broadcast her message and share my gratitude for belonging to a town that not only embraces 'it takes a village' and 'love your neighbor', but also values marriage and family. This is a town who signed and sent a letter of condolence and forgiveness to the stranger who struck and killed the high school secretary in a no-fault accident. This the town that organizes meals for new parents and those who have lost loved ones. Most recently someone put together an ongoing chain of love messages, quotes, poetry or flowers (either through email or in person) to a young couple facing cancer in their first year of marriage.

J and I have been on the receiving end of this embrace when our oldest son was born and spent his early months in the NICU of a hospital downtown. To be the center of this much rally and love is awe-inspiring. Ten years later, I remember fondly the good fairies who came in and changed our sheets, knowing that we were falling into bed exhausted every night, who left us platters of cut up fruit and chocolate, and meals that appeared out of nowhere, and the hand-knit blankets and baby caps...

 

So I had been looking forward to running Lori's story celebrating this kind of caring, when this weekend, J who is recently back from Central America, spiked a frightening fever and ended up in ICU. Though he is looking better and we still don't know why or when to expect him home, one thing is positive: we are held in the embrace of the human community. My phone has been a constant flow of texts and calls and offers and support. My children have been whisked off to their swim practices and metes and sports camps and playdates. Sampson (of the dog blog) has been sprawled out under the air-conditioning vent of neighbors, and everyone has flooded us with positive thoughts, medical insights and string-pulling and love. Last night, a friend stayed over with our kids so that J and I could cozy up in the twin-sized bed at the hospital (Holy Redeemer's Honeymoon Suite!) and watch old Law and Order episodes and joke with the nurses that this was a close to a date as it got for us.  

 

It is an honor to be a part of this community and to share with readers Lori's inspiring story. Maybe you will go on to create this village for those you love. Maybe you will be reminded to hold their marriages and their loved ones close, to help shoulder their burdens. Maybe one of you will be the first to rally a search party if anyone, or anyone's love story, goes missing. Enjoy...

 

 

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Yesterday Benjamin was lost for two hours. I told him that the twins were at a friend's house and I got ready to take him there too while I went to a funeral, but as soon as I found my shoes he was gone. I checked the car. Empty. Looked around the house. Not there. I called the police who were instantly helpful. I posted on Facebook and in an astonishingly short time there were fifty five messages.

 

Curtis-"I'll head down Alden road from the Pike."

Chandra-"Can I help?"

Lisa-"praying for you"

 

Soon a throng of people and four emergency vehicles were waiting in the parking lot around the corner while we cranked out pictures of Benjamin. Dogs trained by people I will never meet, over hundreds of hours in another city, would arrive in five minutes to memorize the scent of his clothes.

 

My heart was frozen, trying not to think about worst case scenarios. Could my entire life be forever charred by this day? It was such an ordinary moment, not like when my oldest son drove from Los Angeles to Times Square to celebrate the new millennium with trillions of strangers which would most certainly include a few thousand malevolent snatchers.

 

Benjamin stopped his Houdini escapes eight years ago and life de-escalated from constant red alert. He will sit in the car, in his favorite seat, whenever he gets wind that we are going somewhere because he does not want to be left behind. Ever.

 

I tried to think the way he does. He would go see Jamie, if he was confused. John and two policemen searched her house. Perhaps he figured out that funerals happen at church and went there. Did he even know the way? The mourners noticed men in uniform combing the grounds. We checked the corners of our closets, the dryer, the trunks of three cars, the bathrooms, the tubs. But he would not hide there. Autistic kids do the same things over and over. He had never done this. Where was he?

 

Benjamin had decided that his sisters needed him. In a burst of heroism he resolved to find them. He scarcely ever calls them by name because he is still confused by twinness and cannot tell them apart, so he was looking for "the girls". But early in the trek it started to rain, hard, and he traipsed into the nearest house, five doors down from us. Their grandmother was home and asked what his name was, which he mumbled an answer to. Her television was on so he plopped down and decided to watch an adventure in lieu of having one. She called John at work, and left a message, but he was pounding the pavement not fifty feet from her phone. She tried our number and left a message, but I was so busy making calls and pacing I did not think to check voicemail.

 

The policeman used his loud speaker to blast out Benjamin's name and to assure him that he was not in trouble but he should come out now. He heard it, but stayed put because he "did not want to be arrested." Besides, Smurfs was getting to the good part.

 

Before the searchers actually fanned out more people arrived home down the street, and having passed several patrol cars blocking the road realized that the small boy in Grandma's favorite chair was probably the object of the commotion.

 

In the aftermath I am enormously grateful. Just now, when I handed him lunch, I sat with him instead of rotating the laundry. We chatted about factoring, and cubes. He smiled.

 

"Zero is a stupid number. When you cube it it is still zero!" I savored the simple sweetness of his presence. 

 

It is cozy to have all your ducks lined up... to know where your children are, and to have dinner in the oven. But falling apart is an experience that brings you to a place more holy than words can define. 

 

People are poised and ready to throw their life aside to find a little boy who will never write them a thank you note, though he would, if pressed, tell you what day of the week your birthday will fall on in 2012 should you be inclined to advanced planning.

 

What would happen if that collective compassion were unleashed on lost marriages?

 

Status Update- I am hurting. I cannot find my resolve to stay in this marriage.

 

How quickly would they forward photos of your wedding day? What people, trained in recovering covenants for hundreds of hours in another city, would arrive to sniff out the clues of its disappearance? How long would it take to have fifty five messages from people with offers to pray, come right away, and help you look for the love you cannot find?

 * *** * 

 

Lori and John Odhner 

BIO:  

Lori and her husband John have nine children and have been leading marriage workshops for most of their thirty years of marriage. Lori writes a marriage blog aimed at a combination of humor, inspiration and real life examples of how to keep a marriage well oiled and running. You can find this at: www.caringformarriage.org

 

 

 

 

 

 
 

 

 

 

 

 

 

Sunday
Feb272011

PART 3 of 3, "This House" by Linda Davis

(Continued from the previous two posts. Click here for PART 1 or PART 2)

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!

 5.

 WALLS

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.

I withdrew.

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.”

 

 

6. 

ROOF

“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.

 


 

 

 

Saturday
Feb262011

PART 2 of 3, "This House" by Linda Davis

(Continued from PART 1 in yesterday's blog

 

3.

 NAILS

There is nothing so much as gratifies an ill tongue as when it finds an angry heart.                                                                           Thomas Fuller

 

Most of what I remember of Noel’s first being diagnosed is not about Noel, but rather, George and me.  A psychologist we saw told us “The attrition rate of marriages among parents with children on the Autistic spectrum is incredibly high.”  It’s easy to see why.  Well-punctured hearts seem intent on adding more nails.  There are the thoughts you share, like being hypersensitive to each other’s shortcomings with regards to caretaking, and the thoughts you don’t share, the ones where you blame each other’s genes for your child’s diagnosis. 

Granted, we had some help here.  When a child is diagnosed with Autism, parents bring their child to a series of professionals who require them to fill out personal questionnaires  the size of novellas.  Sample questions include everything from: “Describe your pregnancy in detail,” to “Do you have any relatives with odd social behaviors?” 

While the former question is obvious, the latter seems less so, until the fifth or sixth time you answer it.  Thus begins an internal quest to nail the genealogical source of your child’s affliction, which inevitably lands on your partner’s family tree.  Sure, I had an odd aunt that never married and didn’t talk to my parents for years at a time because she held a grudge over some inconsequential event. And then there was the time my father causally mentioned in conversation that sometimes he would cross over to the other side of the street to avoid running into an acquaintance. But for the most part, these minor citations paled in comparison to George’s cast of odd relatives, including all those I’d never met who lived in England.  Everyone knows England is the world’s unofficial capital for human eccentricity. 

After a while, I began to want to blame more tangible things than in-laws I’d never met.  No aspect of our lives was removed from this intense scrutiny.  It’s impossible to guess how many hours I have spent in an internal investigation of what caused Noel’s Autism.  Was it the diluted margarita I had when I was breastfeeding?  The time he fell off the bed and hit his head on a sharp corner of the wall?  Maybe there’s something in our drinking water?  The ocean water? The multiple vaccines laced with mercury?  Something he contracted on our trip to Mexico?  The drugs from the root canal I had a month after he was delivered that he too would get via breastfeeding? The unruly collection of electrical wires that sits off to the right side of our house?  The light mold that sometimes surfaces on the ceiling, just above Noel’s bed?  The multiple jars of peanut butter I consumed when pregnant?  George’s saccharine intake?  The cats’ dander? A toxic flower in our garden?  Los Angeles? Boston? Every place in between? 

My preoccupation eventually led me to a theory that wasn’t scientific, but rather, superstitious. I was tricked. Two and a half years of having a healthy baby was a lie. The smiling faces in Noel’s baby books? Lies. The baby shower, and gifts of best wishes? Lies. The heartfelt toasts at our wedding? Lies.  Our engagement and 3+ years of carefree dating? Lies.  In fact, my whole life of good luck had been a lie. It was all a set-up for what happened with Noel.  The Gods were simply balancing the scales.

It has been said that Kubler Ross’ five stages of grief: denial, anger, bargaining, depression and acceptance extend to all forms of misfortune.  While I was firmly stalled on the anger stage, George had landed in the acceptance stage in record time, and he worked tirelessly to get Noel set-up with the best professionals he could.  Although I take some credit for Noel’s diagnosis, George was the engine behind helping him. Five weeks after diagnosis, Noel had a speech therapist, an occupational therapist, a developmental pediatrician, and a developmental school. 

 

4.

 DOORS

The door to success is opening.  You will meet important people who will help you improve.  (What “doors” symbolize in tea leaves, from “Tea Leaves, Herbs & Flowers”)

Health is infinite and expansive in mode, and reaches out to be filled with the fullness of the world; whereas disease is finite and reductive in mode, and endeavors to reduce the world itself.                                                     Oliver Sacks 

Our world was suddenly under siege by what I like to call “the special needs police.”  The beautifully renovated Cape Cod-style home that was the source of so much tranquility and happiness a month prior was now overrun with therapists. Monday to Friday, they tracked through our home; many touting ideas of how the house should look, so as to create less external commotion for Noel.  “You need to get rid of all these toys,” “There’s too much clutter,” “Can you take some things off the walls?” was their condemning chorus. 

At the same time as giving instructions on home décor, alternatively, they always had a long list of things I was required to buy.  The flux of outgoing toys vs. incoming toys seemed virtually the same, but I said nothing.  As badly as I felt, I aimed to please, still believing that my willingness to go along with a professional’s agenda was the key to Noel’s success, a.k.a, my happiness. 

For someone who was uncomfortable sharing space with a housekeeper once a week, adjusting to daily visits from therapists was torture.  Their moods, my moods and Noel’s progress, or rather, lack thereof, shaped each visit.  Gone were the days when I could idly enjoy reading a book in the garden, or put on some music at three in the afternoon and tango the kids from one side of the house to the other.  My dream house had turned into a hospital waiting room, where I waited outside locked doors to hear the visiting therapist’s report on my son.  Occasionally, if I were out and arrived home to him working behind closed doors, I’d hear him ask for me. “Not until your work’s done,” the therapist’s muffled voice behind the door would insist.

Home visits were pleasant in comparison to my new role as taxi driver. At one point, Noel had appointments in Woodland Hills (1x/week,) Encino (2x/week,) Culver City (4x/week,) Westwood (3x/week,) and Santa Monica (4x/week.)  Not only did this mean the bulk of time I spent alone with Noel was on the freeway, but it also meant that we were often away from Julian. Although Julian was much happier playing with friends at the playground, as opposed to sleeping the hours away on long freeway trips (he was at an age when he napped whenever fastened into a car seat,) in retrospect, this may have contributed to his feeling insecure, always seeing Mom leaving with his brother, him being left out.

For a child with developmental delays, a standard pediatrician does not suffice.  Your child needs a developmental pediatrician too.  So, you make some calls and get an appointment.  Easy.  Except that the appointment isn’t until nearly a year later.  Like every profession that services people with Autism, the medical field is severely understaffed.  California is the state with the most incidences of Autism, (LA Times, Maugh), and in Los Angeles there are only a handful of developmental pediatricians to treat them. Consequently, they all have waiting lists.

But there are shortcuts.  Having a tenacious husband is one of them.  Here again, George was relentless in his pursuit of getting an appointment and within three months, we got Noel in to see Dr. R., another long car ride away, in La Canatta.  A developmental pediatrician is the equivalent of a general contractor; they oversee the whole operation, which in this case is all your kid’s services, including, prescribing multiple medications regardless of a child’s age.  Dr. R. had a doctor in Chicago with whom she worked closely, neurologist Dr. M.  Even though he too was overbooked with appointments, she got us in to see him quickly.

All this expediency felt promising. 

We packed our bags and headed to Chicago. Dr. M. believed there was a connection between seizures and Autism, and he administered an overnight EEG to Noel.  My career as “professional distracter” was born.  While the nurse applied the glue to cover Noel’s head with electrodes, I distracted him with cute phrases from his favorite Teletubby video, and a rousing chorus of “I’ve been working on the Railroad,” complete with Noel’s favorite bit, when I hold the “Fiddly-I-OOOOOOOOO!!!!!”  We covered his head with a hat and kept him within range of the box recording his brain waves for 24-hours by sticking within the confines of our antiseptic rental apartment in a wealthy suburb of Chicago.  George and I slept with Noel and the box in between us, if sleep is the word one uses to call closing one’s eyes, but never quite losing consciousness.

The next day, Dr. M. said, “No other doctor would see seizures, but I do.” He prescribed Depakote, an anti-seizure medication in conjunction with Prednisone, a steroid. When his or her child is ill, a parent will do virtually anything to help.  Although I was more inclined to Eastern medicine, we’d had a friend of a friend talk to us for over an hour one evening, extolling the virtues of what Dr. M’s work had done for his son.  “Let me be very clear,” he said in an authoritative voice. “Dr. M. cured my son.  The Autism is gone. That word does not apply to my son anymore.”

            The past three months had been a litany of firsts for me.  Why not add another?  Although going against my core beliefs and putting Noel on medication was not easy, I did it.  But as willing as I was to give the Depakote a try, I wouldn’t agree to the steroid. 

            Like Sleeping Beauty, Noel slept most of the year he was on Depakote.  In retrospect, he was barely alive, napping whenever possible and spending his waking hours in a perpetual state of lethargy.  George was pre-med in college and put a lot of faith in Western medicine.  I knew George would have some long, drawn-out method for stopping Depakote.  I, on the other hand, hated every single day I added it to Noel’s juice.  Feeling like Mia Farrow in “Rosemary’s Baby,” I had one goal in mind, to protect my child.

Without George knowing, I slowly stopped the Depakote to gauge Noel’s reaction.  “Like a new child,” “He was over-medicated,” “The best he’s ever been,” were what all his teachers/therapists said.  Armed with Noel’s dramatic improvement post-Depakote, I finally told George. Although he couldn’t argue with the positive results, he continues to remind me of my trickery to this day. Dr. M.’s reaction?  “It would have worked if you’d used the Prednisone,” and “I have this new drug I’d like you to try….”  Noel probably lost a year of development on Depakote, something he could scarcely afford.

           An Individualized Education Plan, (IEP), or what George and I have come to know as “the worst day of the year,” is required by law for every child with special needs.  Parents, teachers, therapists and school district personnel meet in the child’s classroom.  Surrounded by pictures of your child sitting alongside his classmates (any interaction with another child will suffice), and seeing his name on various pieces of primary colored artwork push-pinned to the walls, parents are lulled into a state of hope for normalcy. Then the meeting starts.  For close to three hours, you have the surreal experience of sitting and listening to a cast of upwards of fifteen professionals – many whom you’ve never met - tell you everything your child can’t do.  The worst of it is, the school district, (led by a particularly unsavory, maudlin older woman named Rose, in our case) tries to conserve its resources, and denies parents as many services as possible.

           We were lucky.  After fighting the district on every point, George and our advocate were victorious.  Noel got everything we asked for. Sadly, even our successes could be construed as disheartening.  I couldn’t help feeling Noel’s poor performance was ultimately what got us the extra services. 

 

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TO BE CONTINUED TOMORROW... Click here for Part Three

Friday
Feb252011

THIS HOUSE by Linda Davis. A short story in three parts...

This weekend, in three parts, I have the pleasure of sharing the writing of my dear friend Linda Davis. Her fiction has been featured in The Literary Review and has been selected as contest finalists in Glimmer Train and New Millennium. In addition to writing fiction and creative nonfiction that will stay with the reader long after, she is one of the savviest readers I have ever met, not to mention a steadfast friend and an inspirational mother. 

Linda and I met in Los Angeles 2007 when we shared mentor Leonard Chang in Antioch University's graduate MFA program. He had the good sense to recognize sympatico styles and put us together. We founded our Sunday Morning Bicoastal Long Distance Writers Club for Two and have been reading and editing each other's work ever since. 

Today, she is debuting part one of her stunning short story, This House. Enjoy, and remember to come back for Part Two tomorrow!

THIS HOUSE

1.

WINDOWS

 

         The Past is a Window into the Soul

The Future is a Mirror Without any Glass in it

  - Xavier Forneret


            My whole life I’ve been lucky. When I was twelve, my friends and I entered a writing/drawing contest with a major department store in Boston. There were over 5000 entries.  I was one of ten who won.  My picture was in all the local papers, and a poster size photo of my likeness hung in the downtown Boston store for over a year.

I’ve had “born” luck, easily attaining personal goals: becoming a member of the National Honor Society and captain of the track team in high school. And, I’ve had “superficial” luck: receiving six invitations to the senior prom, winning a radio contest for picking my ten favorite songs, or scoring a single third row ticket for the sold-out Elvis Costello show, just by asking.  

A childhood friend once remarked, “You are crazy lucky,” after I won an all-school raffle. As I sat ticking off each number that was called out, I thought, Someone has to win.  Why not me?

         My mother once saw a fortuneteller who confirmed my good luck by telling her “I see a crown on her head, symbolic of incredible happiness.” The one time I saw a fortuneteller, she said, “I’ve never seen anything like this.  Such good luck! Please come back in ten years and tell me all that’s happened to you.”

My lucky streak continued into my twenties and thirties where I successfully landed great jobs for Harper’s Magazine in New York and Robert Redford’s production company in Los Angeles.

         In my late thirties, I married my husband George.  We conceived on our honeymoon, which given the number of miscarriages and fertility treatments all of our 35+ aged friends were going through, seemed lucky too. I went into labor on my birthday and even though Noel was born the day after my birthday, I considered it the ultimate cosmic birthday gift to have a child born so close to me. 

Unlike many Los Angeles transplants, I had the good fortune of having my mother move to Los Angeles. As other transplants with children know, having family nearby is a saving grace. 

A month after we had Noel, we bought an old house, which we renovated. Six months later, the real estate market shifted dramatically. Two years later, it was worth twice what we paid for it.  More luck.

Two years after Noel was born, we conceived a second son within a month of trying.  Again, the fertility Gods were smiling on us. 

Even my bad luck was somehow good.  One rainy night, back when I lived in Boston, a car crashed into mine on the 95 freeway, setting fire to my car and trapping me in on the driver’s side by the median. I got myself out seconds before the car blew up. What did all the firemen say when they arrived? “Ma’am, do you have any idea how lucky you are?!” 

It’s true I’ve had my share of disappointments and setbacks: alcoholic father, parents who were too wrapped up in divorce to help me make good choices about my future, and open heart surgery for my mother, to name a few. But while my bad luck could be described as typical, my good luck was decidedly not.

 

2.                                                           

FLOORS

Circumstances are like clouds, continually gathering and bursting – While we are laughing, the seed of some trouble is put into the wide arable land of events – while we are laughing, it sprouts, it grows and suddenly bears a poison fruit we must pluck.

                                                                                              - Keats

When Noel was two and a half years old and Julian was eight months, I was strolling with them in front of Santa Monica’s City Hall.  Noel began to rub his hands together in a quick, repetitive motion.   He’d been doing this for about a week.  George and my mother thought it was cute; that he was imitating his baby brother Julian.  It troubled me.

As I leaned forward to maneuver the double stroller up a steep curb, the word “Autism” suddenly came into my head.  I had zero knowledge of what Autism was other than having seen the movie “Rainman.” Yet, like my certainty that I, as much as anyone, had a chance of winning the school raffle, somewhere in my mind I already knew this word was relevant to my life.

When I got home, I quickly ran to get my “What to Expect: The Toddler Years” book; the same one I’d consulted for sleeping, feeding and other developmental hurdles which at the time seemed insurmountable.  I looked up Autism in the glossary and found the page in the book.  There were ten bullet points listing the characteristics of children with Autism. Noel answered to eight of them. The description of Autism read:

“Autism is a syndrome characterized by impairments in social relatedness, language and communication, a need for routine and sameness, abnormal movements and sensory dysfunction. Autism is a lifelong condition.”

 

I lay face down on the floor in my bedroom, unable to move for a long time, inhaling carpet when I was inhaling at all. Noel and Julian were in the bath at the time and soon, began calling to me. It took tremendous effort for me to go to them because I didn’t want to see Noel in a different way. It was two hours before George would arrive home from work.  I couldn’t tell him over the phone. That much I knew. I desperately wanted to sleep, certain that if I could only lose consciousness I would wake up and discover this had never happened. After I toweled the children off, I put them under the covers of our bed, hoping to lose myself in the folds of the covers – a compromise to sleep. I remember feeling like I was looking down at us from overhead and seeing an x-ray of our bodies: Noel with a broken brain, me with a broken heart. The phone rang.  I knew it was George. He always called around this time. I thought about not answering, but selfishly I wanted to hear his voice even if I couldn’t tell him. Maybe it would help comfort me. Didn’t work.

His first question, as always was, “How are the boys?” “Good,” I said without a second’s hesitation. I quickly got off the phone, using Julian as an excuse.  As I hung up, I remember envying George’s last two hours of ignorance of Noel’s condition. Two hours later, when I showed him the book, he fell to the floor and unlike me, wept profusely. 

The next day, we paid an emergency visit to Noel’s pediatrician, Dr. W.  After observing Noel for over a half-hour, he declared, “I’d be very surprised if this was anything neurological.”  As much as I wanted desperately to believe him, I knew he was wrong.

Even with his misgivings, Dr. W. referred us to neurologist, Dr. C, whom we had to wait an agonizing forty-eight hours to get in to see.  Finally, we made our way to her cluttered windowless office, ominously located just above a children’s cancer clinic. Dr. C. did not smile or attempt to ease the burden of bad news with any smiles or consolatory remarks.  She diagnosed Noel as Autistic as casually as if she’d told us he had a minor cold.  It took five minutes.  

You may be wondering why no one had noticed Noel’s Autism sooner?  I’ll try to explain.  Noel was our firstborn. Although I’d done more than my share of babysitting through the years, this was my first experience with a baby.  So, I relied on professionals. He’d been at nursery school and seen by various healthcare professionals his whole life (when he was one, he had a blocked tear duct that required a minor operation.)   Although he’d walked late, many children do and as long as he did by 18 months, Dr. W. wasn’t concerned.  While he didn’t demonstrate any interest in his peers, Noel was intensely focused on adults, especially those closest to him.  He certainly had no aversion to being touched.  If anything, he sought it out, burrowing under covers and pillows and reaching his small hands to fit inside my shirtsleeves,  (Later, we would discover that this was indicative of sensory issues: a component of Autism.) 

He also had language.  Language plays a crucial role in Autism.  It’s the yardstick by which many children are measured: those who talk and those who don’t. Noel spoke from the time he was eight months old, sooner than his typically developing brother, although, at age two, when Noel should have progressed to full sentences, he was still stuck on single words. Lastly, we had the example of Dr. W. stating his disbelief at Noel’s diagnosis.  So, instead of being hard on myself for not knowing sooner that Noel was Autistic, I opted for my last sliver of confidence-building in the dreary, hopeless shattered dream days after Noel’s diagnosis: I had been the one who had diagnosed him. 

Dr. Temple Grandin, the most famous, well-educated Autistic person in the world who has garnered national attention for her award-winning designs of humane slaughterhouses says early diagnosis is tantamount to progress. Ironically, perhaps this had been, my last dance with good fortune: diagnosing my own son’s tragic misfortune. Needless to say, we never went back to Dr. W. again.

In the past, whenever I’d felt scared or received bad news I would think/wish/pray my way out of it. Things I couldn’t change – my mother’s bad heart, or my own broken heart –fixed themselves with time. When Noel was diagnosed, I remember thinking initially that I could outsmart fate, as I always had.

This time, there was no out. 

A dear friend said to me, “We’re at an age when we’ll all receive our share of bad luck: diseases, death, tragedy.  This is yours.” My good luck had come to a halting conclusion.

 

* *** *

 

TO BE CONTINUED TOMORROW.... Click here for Part Two