(Continued from PART 1 in yesterday's blog)
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.
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.
* *** *
TO BE CONTINUED TOMORROW... Click here for Part Three