I spent many nights trying to get those reports typed, and woke in the morning drooling on my keyboard. The remaining nights I cried myself to sleep. Working from home was great when I was free to hop in the car and go have tea with Grandma, but as a house hostage in a strange land, it was devastating.
I was wholly disconnected from my life. Disconnected from everyone and everything I knew. Far away from lunches with Grandma, away from my parents, my brothers, and all my childhood friends. Taking this autistic girl far from her home and family was a very bad idea. Everything changed when I left home; parts of me were lost never again to be recovered.
Moving away from everything I knew, and becoming a mother for the first time highlighted how different I was from other women.
I suppose I didn’t notice it as much at home because I was connected to people. I was satisfied being odd, weird, a little different—just like my Grandmother. Everyone who knew her knew me, and that made me seem—not quite as odd.
Maybe had I stayed, she would have known what to do about my baby’s screaming, or been there to tell me that I was normal after all. Maybe she could have just made me a cup of tea—that always made me feel better.
Surrounded by proper southern women who felt the need to tell me how they would not let my kid get away with this or that, or how he would eat what they put in front of him did not help me. Other women ran their household’s with ease. Homes were immaculate, cabinets organized, bills paid, children fed, bathed, and in bed by seven o’clock.
Not a hair on their heads were out of place, while mine stuck out in every direction. Their make-up was applied flawlessly, they never left the house without putting on their face. The best I accomplished most days was slipping out of my pajamas, and into my sweats, or a pair of jean shorts and a t-shirt. My idea of hair being neat was slicking it back into a ponytail. If the little fly away hairs stayed stuck down, I was good.
I was sinking—fast; drowning in my own guilt and confusion while trying desperately to take a breath of sanity. There was none to be found. There was something very wrong; surely, going back home would fix it.
We moved back to Brooklyn just before my oldest son’s third birthday. He’d already proved to be an interesting child—extremely picky about what he would wear, or eat. He spoke a million miles a minute to any adult who would listen to him.
For an entire year, the only things he ate were brown and serve sausages, and buttered crackers. It didn’t matter how many people said he needed to eat his veggies, he was not going to eat them. Sausage and buttered crackers—that was it.
If I tried to put a pair of blue jeans on him, he screamed and tore them from his body. Blue fireman pants were all he would wear. Blue fireman pants were blue active pants, the kind that were water resistant. We owned at least ten pairs of the same pants. Making him look like he had more than one outfit was not worth the meltdowns. I endured the stares.
When the screaming let up just after his first birthday we moved on to him being the vomit kid. He didn’t vomit because of odors as I had when I was a child. He produced projectile vomit anytime we were in the car. Two blocks from the house was usually as far as I could get without incident. To this day, he sits in the car with his head hung out the window like a puppy knowing the inevitable vomit is coming.
There were perpetual ear infections, asthma, allergies, and general madness. He was not an easy child.
When we moved back to New York, he stopped speaking. Daycare workers could not speak to him so we enrolled him in the Montessori school. There his teacher complained of not being able to understand him, and that he did not get along with the other children. “Maybe Montessori is not a good fit for him,” she said.
My husband and I mistakenly thought that his lack of speech was the teacher’s fault, or because of moving, or the difference in accents. It never occurred to us that it could be anything more. Doctors, parents, and teachers missed autism in me, and I missed it in him.
We enrolled our son in a private Christian school, where he started pre-K. From the first day of school every morning was the same. I dropped him off, and he screamed, cried, kicked, yelled, and held on to me for dear life. I felt like an awful mother.
Less than a month later, his teacher wanted him “evaluated” because she could not handle him. She lost him one day, and the assistant principal found him roaming the halls. How did she not see him leave her room? She lost him another day because she forgot he went into the bathroom an hour earlier, and never came out.
The classroom was small, and the restroom was inside the room—a single person restroom much like the one we had at home. He loved to go into that bathroom and stay there locking himself in—or was he locking his teacher out?
When he was not hiding out in the bathroom, he was sitting under the table by himself. He refused to sit with the other children, and his teacher accused him of not paying attention. He was paying attention because when I asked him any question about what they did in school that day, he had the correct answer. He just refused to sit with the other children.
I balked at the idea of an evaluation for my child when his teacher was clearly incompetent, but in the end I went ahead and made the appointment.
My son was taken into a room with ten other children, all ages 6 and 7—my son was 4! He sat under the table, tinkered with his shoes, and basically ignored everything that was going on. This “group session” lasted 45 minutes, at the end of which the doctor pronounced that my son has ADHD and needs medication.
“I don’t think so!”
That doctor never spoke to my son. He only said, “As you can see he could not sit still.” Hell, I could not sit still!
It was mid-December and I was pregnant with my second child, when I got a phone call from the school. My son had locked himself in the vice-principal’s office and would not open the door, or come out. His teacher sent him to spend the day in the office because she refused to have him in her classroom until I consented to putting him on medication. That was his last day of Pre-K.
I thought I could go back; I thought I could return to the place I loved, to the people I loved, and everything would be better. But—in life you can only move forward, you cannot go back.
I did not perceive the passage of time. When I returned home everything was different. My grandfather’s glue had dried up and my family fell apart. Fifty years of memories sold to the highest bidder—the home I grew up in and loved was no longer home. Bars covered the windows that strange faces now peered out from. How can so much change in so few years?
Grandma sold the house after we moved away—it was my fault because I didn’t stay.
Although everything was different, many things remained the same. I found myself employed, unemployed, and re-employed again. We struggled with finances, as did everyone around us, but my ability to cope with the added stress was dwindling. Going back was not the way I dreamed it would be.
It seems as soon as I am in a new situation, I begin looking for ways out of it. Searching for greener grass, reaching for what is out of reach, looking for what I was unable to define. A change of location, job, and friends was always the perceived answer—and it was always the wrong one.
Looking back through enlightened eyes, ones that now filter life through the lens of autism; I can clearly see how I take longer to learn from where I’ve been than others. The difficulty and often inability to generalize information, and to apply it to future situations becomes apparent.
I told myself that the disconnection and loneliness that I felt when we moved to the Mississippi Delta was because of its location. It could not have possibly been that my loneliness came from being disconnected from all that was familiar to me, from all my friends, and from all my family. Surely, moving to a cheaper cost of living location would provide more stability and happiness in my life.
Happiness—an indefinable state, the elusive shadow I continued to pursue.
I’ve suffered from depression on and off for y
ears, but if I found new places to live (I thought) I could keep it at bay. If I kept moving I could stay one step ahead of the depression that followed me; the depression that stalked me, threatening to cover me with darkness and suffocate the life out of me. If I just keep going, moving, changing, searching, I could outrun it—but I could not. The dark cloud that pursued me caught up; it ran faster than I did.
It caught up with me in a new place, a new home, a new town, in the countryside. It took me over in the living room, at work, and on the front porch. Depression sapped my energy, my ambition, my dreams, and my very will to take another breath.
I fear depression—intensely. It is by far the most painful ailment I have ever faced. It is the thing that slammed into me, ran me over repeatedly, and then kicked me in the head when I was down. I struggled for change, for understanding, to figure out what was “wrong” with me—no one knew. Or at least, they didn’t guess correctly.
Now overwhelmed by new surroundings, a new workplace, and new people with whom I didn’t fit, my carefully constructed façade began to crumble. I became lost in my own world more often, trying to complete tasks at work, but becoming quickly overwhelmed I lost track of my hours—of my days.
Headaches began; the kind that I needed to rock through while holding my temples. The noises all joined together—the humming of the florescent light bulbs, the sounds of people talking, the phones ringing. I heard the noises but could not stop them from running together. Voices blended together to the point that I had difficulty understanding the words that were being spoken to me.
My own speech became jumbled, as I struggled to find the correct phrases, to pull from the correct database of words. I stuttered, until finally I had no words at all. Tears fell, my breath quickened, and the world spun. My heart raced so quickly it felt like it would explode—like I would die.
Chapter Twenty
Diagnosis Crazy
Whenever I have difficulty articulating a problem, I write a list, an explanation, a description. The written word has always served me well, and allowed me to open myself up to the world when my verbal words have failed me.
After several doctor’s visits, I was still having trouble telling him all that was concerning to me. My clumsiness, my forgetfulness, my sensitivities to light, sounds, textures, and tastes— the overheating after showers, the water that felt like shards of glass hitting my skin.
I tried to explain my loss of speech, my loss of words—but of course, my speech failed me. The more stressful the situation, the more mixed-up my vocabulary became, so I faxed him a letter—a seven-page letter detailing my concerns. Soon after I was sent for a psych evaluation.
My doctor decided that I was depressed and gave me anti-depressants. I couldn’t really argue with that first impression because I definitely was depressed. I was again lost and alone—disconnected, and now overwhelmed as well.
The spinning world that caused my heart to race, my brow to sweat, and me to hyperventilate, was diagnosed as panic attacks. The anti-anxiety medication Xanax was added to my anti-depressants.
I learned after the fact that the FDA warns that if panic attacks begin or get worse while taking Xanax, that the medication should be discontinued immediately. My panic increased to the point that I was fearful of leaving the house alone. The doctor doubled the dosage.
The medication madness did not end with anti-anxiety and anti-depressant drugs. Although, doctors tried to attribute my neurological symptoms to depression, depression simply did not explain my sensory processing issues. I was sent to a neurologist for evaluation to rule-out Multiple Sclerosis.
CT-scans, MRI’s, myelograms, spinal taps, a femoral muscle biopsy, a sural nerve biopsy, blood work, and three specialist later, revealed degenerative disk disease and peripheral neuropathies, which could not be explained. Back pain was something I had always lived with and because of my hypo-sensitivity to pain, I rarely complained to a doctor about it. The medications dulled that hypo-sensitivity allowing the pain to hit me full force. Muscle relaxers and pain medications were added to my already long list of medications.
Taking anti-depressants, anti-anxiety medications, muscle relaxers, and pain killers three times a day made it impossible to do anything—including keeping my eyes open for any amount of time. I began sleeping sixteen hours per day. The solution—they gave me Provigil to wake me in the morning. That stimulant kept me awake for 48 hours; so they added Trazadone, which would help me to sleep.
Anytime there was an issue or a complaint regarding my medications, another was introduced. Within a couple of months I was a walking pharmacy.
I wound up with several different diagnoses, which explained different symptoms, but none that explained them all. Having executive function impairment the diagnosis of ADHD was added, along with Adderall to help me function. Several other medications such as Cymbalta, and Invega were introduced, and then all this medication quite literally drove me mad.
The combination of medications caused a state of Psychotic Mania, leaving me running around the streets rummaging through people’s trash looking for treasure—treasures that I could sell; treasure that was going to make me rich. I was completely out of my mind.
The mania brought along with it one other thing—another diagnosis, bi-polar disorder.
I wish I could tell you more about this period in time, about how and why I decided to start flushing the medications instead of ingesting them. But the truth is, most of what I can convey is second-hand; events relayed to me in the aftermath of this destruction. I have little to no memory of this time period, which lasted almost three full years.
I have no memory of my children’s birthdays, no memories of Christmas mornings, no memories of family vacations—they are gone—lost forever.
The misdiagnoses caused doctors to prescribe medications I did not need. The medications had unexpected effects on me, which were then treated with yet more medications, until I was out of my mind. None of the diagnoses was correct; none of them explained what was “wrong” with me; none of them could.
In the end, when the neurologist was at a loss to understand the myriad of complex symptoms that I now know to be all traits of my Autism Spectrum Disorder, or side-effects of multiple medications, he determined that it was just “all in my head.” I was crazy.
There were days that I accepted my life would never amount to anything. I was crazy; professionals declared it. All my neurological issues, my sensitivities, my inflexible processing was a product of my imagination. Maybe I was just a lazy horrible person looking for an excuse for her behavior—a reason to keep everyone away.
I began to pity my husband, who was stuck with a crazy wife, and a terrible one at that. My poor children, stuck with a crazy woman for a poor excuse of a mother. It would be better for them if I was just gone, disappeared, vanished into the fog.
A year passed during which time I hardly ever left the house. I began cursing the mornings, and the sun for rising. I rose each day angered that I still drew breath; that I was wasting the air my lungs sucked in. I lived in the deepest darkest depths of hell, where depression lived and my soul died.
No longer having any faith in healthcare professionals, and even less in mental healthcare professionals, I was left at the mercy of the dark demon I know as depression.
I began to look at my children, whom I loved more than anything in the world, and wondered how they would remember me–their crazy mother.
What stories would they tell their friends over drinks? Would they only remember a woman who stared into space, lived in her pajamas on the sofa crying while the mess piled up all around her? Would they remember anything else at all?
Life had come to a screeching halt, a stand still. There was no air to breathe, not even a hint of wind to rustle the leaves of the trees—it was dead still. I was numb; I no longer felt anything.
Life was coming apart, crumbling down around me.
I guess something still stirred though—deep in the depths of
my mind. Something I did not know was nagging at me, haunting me, awaking my sense of injustice.
Injustice—that is the one thing I cannot live with, the one thing that I cannot accept. The unfairness of the doctor’s statements; the idea that it was all in my head, but I felt it acutely. How could that be correct? It didn’t make any sense.
All the things they claimed were wrong with me, all the different diagnoses to explain away every symptom—none of it made sense. There must be one thing—one central cause for my pain, one explanation.
I pushed these ideas from my conscious thought- focusing instead on myself. The problem must be me, I must try to change, to do something with myself, make something of myself, and find something I can like to do again, something I can enjoy—something I can obsess about because happiness is special interests.
Chapter Twenty-One
Autism Helped Diagnose My Autism
I found my next obsession sitting at my kitchen table with my brother. He was online playing a game of poker. I played poker as a child with my uncles. They taught me how to play, and would allow me to sit with them when my parents went out on Friday nights. Babysitting me was easy—just give me some cards and a stack of chips and I happily played cards with the grown-ups.
Those nights of playing poker in the basement of my grandparent’s house with my uncles were a long time ago. I barely remembered how to play; I could not recall all the rules. Wanting to play again, and wanting to beat my brother, I decided it was time to learn.
One of the diagnostic criteria for Asperger’s Syndrome is in a category entitled “Restricted repetitive and stereotyped patterns of behavior, interests, and activities”—an encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either intensity or focus.
I clearly did not fit these criteria. I didn’t have any restricted, repetitive and stereotyped patterns of behavior. My interests were not abnormal—many people are interested in poker. Many people love playing poker—and some even play poker for a living. Why is my interest abnormal?
Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism Page 13
