THE MAKINGS OF A QUEST: WHAT’S WRONG WITH MY FAMILY?

Update, 2022. I re-read this after attending a local, newly formed autism support group. “Nina” is now 25. All other attendees were parents of young children, and despite decades of the autism puzzle unsolved, they were focused on making the public schools fix their children. I understood their hopes, fearing to share my experience lest they be dashed. I re-post this in the spirit of a plea: to keep searching, to acknowledge the wider roots of this epidemic before it’s too late to curb its effect on our future.

“Grandma’s crazy.”

But I never knew it, a young girl growing up in the next room, bouncing most mornings into her pin-neat quarters to hear the old woman play and sing. The piano wasn’t grand, but lingering chords and her smooth soprano transported me to some place like heaven. Later, for a real change of pace, she’d spin Elvis at 45 rpm on her record player and we’d both wail: You ain’t nuthin’ but a hound dog…

But how could I have missed something like Crazy? How did I overlook the times she was too sad to speak? How come I don’t remember her visits to the hospital of iron-bar windows where they shocked, sedated, and tore the music out of her?

In childhood we can be oblivious to the drastic changes in a loved one that happen over time, especially if it involves secrets that others manage with skill. It wasn’t my job at age five or ten to note when people changed.

Like the way my so-normal older brother—gregarious, bike-riding, model-building, and outer-space loving Sam—began at puberty to become someone else. As if slipping into another’s skin, a sullen, contemptuous hermit took the place of my hero. Could Crazy be something you caught, like the flu? Grandma was no longer with us, her malady rarely spoken of. No one wanted to believe it was deja` vu all over again.

Our parents pretended Sam’s malaise was typical teenage angst. I believed it was a big-brother thing. Sam stayed in his room, tinkering with theorems and equations that had nothing to do with me. As he boy he’d discovered Albert Einstein and talked a blue streak about science. But the adolescent Sam spent most hours in his mind, captivated by the daydreams there.

I was a young hippie, he was a nerd, and that, I figured, was that.

Yet the more enamored of the counterculture I became, the more my parents worried about me. Sam kept to himself, he was no trouble. I was outright incorrigible and so were my friends. For the authorities, sex, drugs, and rock ‘n roll translated into the family disease. When I ran away from home, they proclaimed I was walking in the footsteps of crazy Grandma. Incarcerated in a mental hospital for several months with other misfit kids, we were forced to swallow the going neuroleptics and “tranquillizers” of the day.

The messenger

Thirty years later, my husband and I adopt a beautiful, blue-eyed baby girl. After a year of bliss she turns inside herself and won’t come out. Nina stays sad, anxious, and sedentary. She stops looking us in the eyes, never speaks, sleeps little, tantrums mightily. In 1999, after some fruitless months of hit-or-miss Special Education, we received the experts’ decree. Autism.

This time, I vow, no one will pretend nor give up. This time, I will find the root of the mind’s malady that makes people change, makes them travel far from where we once knew them. In the past called “childhood schizophrenia,” at the time of Nina’s diagnosis autism was still spoken of as a lifelong sentence of mysterious origins for which there was no treatment.

But how could I give up on her, the way everyone did Grandma, Sam, and me? I was unique among my friends for never giving birth—but what if Nina was the one who’d tried to get through, thwarted by miscarriage after miscarriage? What if, during our efforts at pregnancy, she was the essence of that light by my side of our bed that my husband saw, awakened in the wee hours and stunned as the little globe, as if conscious of being seen, turned and made its way along the foot of our bed and off into the night?

Even if that was only a dream, even if there was nothing synchronous about Nina becoming the baby who chose us, how could I give her up to experts I sensed were flailing—no longer calling autism a death sentence, but hotly divided on how to treat it? What drugs were out there for a 2 year old to quell the anxiety, the tantrums, to force her back to daily life as we all agree to play it? None; and I never considered anything for her “mind.” Not after the cocktails forced on me, mixed by well-meaning folks at the nurses’ station when such pretty pills were starting to be used “off-label” for teenagers.

Little did I know on diagnosis-day that Nina’s problems couldn’t be wholly blamed on the birth family’s genetics. I was innocent of the bombshells that would be dropped one after another into my awareness, with mounting evidence and backing research, about the unexamined causes of autism and more. I wasn’t prepared to see that the epidemic of “mental illness” and “behavior disorders” in adults and children has by and large an environmental root. That synthetic chemicals, heavy metals, stealthily hidden infectious diseases and the unprecedented stress of living in the modern age are making us crazy.

Toxic earth, toxic mind.

I owe her my life

Through Nina’s journey back to our family, I learned how to save myself. But like a survivor of great catastrophe while others struggle still, I ache for Nina’s continued lack of recovery, for the failing health of my brother Sam, for the waste of creative energy that marked most of my grandmother’s life.

Nina’s journey with diet, vitamin/supplements, and detoxification set an example for me to follow. I took her lead and regained health of body, mind and spirit—not in the pink totally, but with a fighting chance. But why me and not her? I still wonder while hunting treatments for her great anxiety, her struggles with articulate speech and her whopping gastrointestinal problems.

For that matter, why not Sam instead of me, why were his great gifts of scientific reasoning left to languish? Why not so many others, locked into the lies of anti-depressants and “atypical” neuroleptics? In my position, the only sane thing to do is tell the truth and hope it helps someone out there. Because here’s how bad I’d become before Nina’s example showed me the way to wellness:

The other day I found a picture of myself, still in my forties, looking over seventy years old. My cheeks were sunken in, dry hair straggled, mouth pursed as if it would be a supreme effort to smile. I remember how hard it was to get out of bed. But I had two young children—we adopted an infant from Vietnam after Nina. I had to get moving and stay moving most of the day. It was a busy mom’s life, but something told me more than “older parent” status was slowing me down.

The migraines were coming three times a week. Since they often lasted longer than 24 hours, that meant they were nearly constant. And I hurt all over–joint pain, muscle cramps, a struggle to bend, reach and turn—the monstrous fatigue insured my major fetish was taking a nap.

My husband had to work hard to pay for all the things that Nina needed–treatments our society deems it unnecessary to ask insurance companies or school districts to provide. I was on my own, as if a single parent for most of our waking hours.

The depression was an extra weight to bear. My husband and I were estranged due to the stress, and friends drifted away, unable to bear our grief and all-consuming focus. Spiritually, I felt left out of the embrace of any benevolent consciousness at large. Always a nature person, it was an extreme effort to drag myself into the sunshine or down to the creek on our land. My spirituality, rooted in the Earth, dwindled to a memory.

Luckily, autism chose us in a time of change. Within weeks of Nina’s diagnosis, we attended a seminar on nutrition, behavioral therapy, and the role of vaccines in the disorder. Quickly we put Nina on the gluten- and dairy-free diet, began treating her yeast problem, and added B vitamins among others. The changes were swift and cause to rejoice. Our couch potato resumed running up and down the driveway. She looked me in the eye and smiled. Her babbling gained purpose, urgency. The world was making inroads and Nina was meeting the challenge gladly. As parents we were ecstatic.

A slow light or a sudden “Duh?”

I wish I could recall how I linked 2+2 into an equation of hope. Let’s just say it dawned over time that what helped Nina might help me. I’d studied migraine enough to know that wheat and dairy could be a trigger, and had cut back on both. But cutting back, I’m so sorry to report, didn’t cut it. I took the plunge and joined Nina on her diet. Within less than two weeks, I was emerging.

The migraines lessened in strength and frequency. My energy took a fast upswing. On the gluten and dairy free diet, in a short few months, I dropped 30 pounds. When I embarked on an intense herbal treatment for gut-yeast (Candida albicans) the effects were more dramatic and I was migraine free for six weeks. After much detective work, I discovered and eradicated the last migraine trigger: caffeine. I’d known for years that alcohol was a trigger—and now, darn it, I also had to give up my one cup of green tea a day! For some of us, not everyone, complete cold turkey is the key.

Here’s why it was worth it. The most exciting events of all were happening in my mind.

Decades of therapy never cleared away a tendency toward anxiety, depression, and extreme suspicion of others. Not to mention a tendency to give up when the going got tough and hide inside my house and myself. According to our “family disease,” all too obvious in my brother Sam, this presented as full-blown paranoid schizophrenia.

After trying Nina’s remedies, in short order and without focusing on it, I noticed an absence of certain categories of thought. Paranoia, resentment, and excessive worry simply vanished. Not that I became a non-stop happy camper—there were and still are “issues” aplenty. It’s just that with the debris cleared, along came a couple of new and exotic visitors who took up residence in these parts.

Optimism. Perseverance.

I believed that Nina could fully recover. I gained a hopeful take on my own future. After dubbing me the “Supplement Queen,” my husband also came around to nutrition and said goodbye to his own anxiety disorder and plaguing reflux problem. It was like discovering a whole new world, and I wrestled with righteous anger that no doctors had been there to enlighten us–that most of it was the result of our own quest and the insights of other parents in similar shoes. But the uphill battle had become a trek through one amazing discovery after another. It was a new day.

Behind blue eyes

Like many children with autism, Nina experiences tons of therapies and treatments. Some have been a bust. Others, major breakthroughs. Chelation of the toxic metals in her body was a turning point: she cinched the ability to communicate, became interested in toys, and soon started noticing her peers. She fully knows who her family is and that she is loved. She adores swimming, the mall, horses and swinging in the park. And she is learning, albeit slowly, to read.

And yet. Through all the blood, sweat and tears we wait—it seems in vain–for Nina’s recovery. We know that to a certain substantial extent she is still trapped behind those blue eyes.

Nina turned eleven this year. Her peers in the fourth grade far surpass her in academics, social prowess, height and weight. I am worn out from battling her special education cooperative to set higher standards and implement appropriate learning strategies—we have taken her school district to mediation twice. There seems to be no remedy, either natural or pharmaceutical (yes, gasp, in sheer desperation we tried anti-inflammatory drugs for a year) that can repair her gastrointestinal track from what appears to be a downhill slide toward Crohn’s Disease.

A recent flurry of press about vaccines and autism promises the good that can come out of free and unfettered dialogue. A young girl named Hannah Poling was awarded a settlement due to vaccine-caused autism. Each presidential hopeful for our nation has stated their fears of over-vaccination as a cause of autism. Still, the push is on for flu shots mandated for all children, shots that contain the mercury-laden preservative implicated in autism, known as thimerosal. I’m reticent to lay the entire blame for autism on vaccines, but making them safe must be a priority. Not only mercury, but live viruses and other toxins such as aluminum, antifreeze and formaldehyde must go.

If Nina saved my life, perhaps she can do even more. Whether mercury-laced vaccines or industrial solvents, science pleads with us to recognize the dangers to our plant-and-animal brethren, to our ozone layer, to our children. The quest Nina set me on keeps forcing connections to similar ideas about “mental illness.”

I wonder about our worldwide depression (121 million and counting), our anxious suspicions that keep us indoors staring at TV and computer screens, our rise in autoimmune disorders of many stripes. Let’s learn from the autism epidemic: toxins hurt, and pharmaceuticals don’t help.

Once upon a time, autism was called childhood schizophrenia…then revised as “a developmental disorder of mysterious origin with no known treatment”…now it emerges as a collection of symptoms in response to contact with substances too deadly for any part of our Earth. If views about autism can change this dramatically, why not for any “mental” health diagnosis?

“Toxic Earth, toxic mind,” deflates the blame-game against families, against psychiatrists, even “society.” It turns each one of us instead toward a nobler responsibility, that of safeguarding our minds through prudent care for our planet.

To foster this awareness is the mandate I feel from my afflicted daughter who in dreams speaks clearly as she points to my heart:

“Say your truth, mom!”