My Daughter, My Teacher

Jagabandhu dasa: Each day begins with hope anew before quickly deteriorating into a miasma of overwhelming despair and frustration over the basic futility of the ephemeral realm. It’s almost as if things weren’t supposed to work out in order to assist the soul in evolving to a deeper more primal existence devoid of temporality and confusion. I must know that the various hardships faced within each moment of my contemporary torment are specifically engineered so that I might at last turn truly inwards and begin my individual voyage of self-discovery.

Possibly, my own inward leanings may have had more abundant inspiration than others. My mother passed away when I was scarcely a year old. I can’t say for sure that this compelled me to always seek a deeper meaning in life through religion and philosophy, both East and West. When I was barely 17 years old I quit high school to join the ISKCON Chicago temple in Evanston. Needless to say, the basic monasti c lifestyle of abstinence from worldly things ill-suited my strong desire to marry and have children. I wasn’t a monk for very long, although some aspects of monasticism such as study of holy books, chanting and a reclusive existence have always retained their appeal.

In the early 90’s, our eldest daughter (my long sought-after first born) was diagnosed with severe autism and mental retardation. At first we grieved, ” Why me, God?”; before evolving to realize the Truth in the Bhagavatam verse tat te nukumpam…”personal difficulty and hardship are not only not a bad thing, but rather my actual inner necessity come by God’s Grace to assist my real inner development.” Then the question becomes, “Why not me, God?” Iron character is forged in the fire of ordeal. Among those who know us, there are those who think my good wife Krishnaashrita(literally one who has taken shelter of Krishna) Dasi is a saint, and that as a soul, I have no choice but to take shelter.

Now our daughter is 17, still has no speech skills and the basic mentality of a toddler (who is 120 pounds of mostly muscle.) Sometimes out of frustration over her own communication impairment (she is actually quite an intelligent soul) she can scream/shriek/howl inconsolably like a banshee/pterodactyl (or someone being brutally murdered) at the top of her healthy lungs for minutes/hours or days. As you might well imagine, the neighbors really love us for it and we’re very popular in the neighborhoo d. In the past year she’s developed the apparently uncontrollable tendency to grab at strangers in public which has forced us to be unable to take her anywhere. Recently, hormonal-based rages and toddler-like temper tantrums have caused her to repeatedly break the glass in the picture frames throughout our ashram thereby causing an already extremely difficult situation to become dangerous. Our “living” room used to look like an altar before we had20to remove nearly all the Sacred pictures which previously gave us Their Holy Association and Comfort. Little by little, glass panes are being replaced with plexiglass. And our Spiritual Friends have begun to return.

Nonetheless, our life is in constant turmoil and upheaval. Even still, when she is upset about not getting her way she is prone to shriek inconsolably for hours as she breaks dishes, picture frames, windows, walls (anything vulnerable or weak), in fits of rage while simultaneously ripping/ shredding the shirt right off of her back. She can be happy at times but mostly our life is lived under a constant siege of terror from an immature bully selfishly seeking to have it her way or else turn everything to ashes. No she hasn’t learned how to play with fire. She has plenty of other handy implements of our mass destruction.

Take water for instance. She’s obsessed with water. Not for drinking, but for splashing. Everywhere she can, like some demented priest desperately trying her best to purify the dirty=2 0world around her. She’s progressively ruining our plumbing and septic system by her liquid obsession in spite of our feeble attempts to thwart her onslaught by locking her out of bathrooms and turning off other sinks at the valve.

Food is fun too. She has no patience to allow for hot food to cool and so frequently ends up angrily squishing a meal before she slings it like a mushy claymore bomb on the fl oor and walls. Anything she likes even a little bit quickly becomes incorporated within her inexorable routine, a particular DVD, where we drive in the car, how and where we shop and which specific route home always making sure to tap me on the shoulder when it’s time for me to use my turn signal.

We’ve been through the best that modern medicine can offer along with several well regarded alternative therapies. We chose not to subdue her with birth control pills, blood pressure meds and anti-anxiety/anti-psychotic meds which would have left her drooling peacefully in her chair with potentially dangerous side-effects. That’s the best they could do for her in the end. We’ve also tried the gluten-free diet for years on end with very little result excepting for her frustration and disappointment in watching others eat the prohibitive foods she wishes she could also eat. No we haven’t tried the dolphin therapy yet. Even if we could afford it, there’s a two year waiting list with little possibility of a follow-up treatment. And we9 9ve heard the theory about childhood vaccination side-effects but feel this doesn’t apply in our case because we observed certain behavioral and developmental abnormalities prior to her vaccinations.

After several years of involvement with the experts at our local university hospital they commended us for doing such a good job with our daughter and subsequently put us on their inactive list. Understandably, as with all conve ntional professions they seek a certain level of success in their work which in this case would mean eventually successfully “mainstreaming” an autistic person into a regular classroom environment and hopefully some eventual semblance or facsimile of a regular life. As if. Wouldn’t that be nice.

We wish there was a school for her but the severity of her impairment has made it impossible as she has no
speech skills and quite possibly never will. You can imagine the Pandora’s box of fear over her inability to tell us of her potential mistreatment (I can remember a line from the Simpsons TV show about their youngest child going of to daycare at the only pre-school in Springfield currently not under investigation).

This combined with her own angry, frustration over her basic inability to communicate her basic needs have
made her extremely volatile and difficult to handle even when both parents are in the home. Unfortunately, economics prevent the reality of this necessity from manifesting a s most weekday mornings I leave for my construction job at 5AM, usually traveling an average of well over a hundred miles roundtrip before finally arriving home just before 5PM. This means that most of the time my wife is left trying to hold down the fort while I gruel away hours from home just so we can have basic food, shelter and clothing. Worrying the whole time that my poor wife will be unable to manage to control this wild, primal being who is our daughter.

There are some who would suggest that the government bears a large degree of responsibility in helping to ameliorate our ongoing and expanding domestic crisis with autism. Or that there is some “cure” for autism as if it were cancer or an infectious disease. Wouldn’t that be nice. Or idealistic. Possibly there are some individuals less severely impaired with greater chance of having success with therapies alternative or otherwise. Autism is a spectrum disorder and so there are autistic people who are able to become more adapted to a more conventional existence. This appears to not be the case with our daughter who is at the more severe end of the spectrum. The character portrayed by Dustin Hoffman in the film Rain Man was nearly normal by comparison.

It took a long time for me to accept that there was something not quite right about my firstborn child, just as it has also taken a long time to accept the inevitability of my wife and I being the only ones to personally effect her mandato ry 24/7 lifelong care-giving. At 50, we feel old, and very unsure about the stability of our future. Never mind about Social Security. We have no choice but to steel our nerve and heart to boldly face the severity of our impaired existence. Self-pity is one of the first things to go along with any semblance of regular family and soci al interaction as we are virtually left in complete isolation to fend for ourselves or perish with the spirited attempt. Rather than look outside myself for blame and solution to my own predicament, my own inner resolve is to become ever more self-reliant, constantly reaching deeper reserves of hidden strength to face the difficult task of raising and caring for our child. I must become evermore convinced that I possess everything necessary to continually rise above the challenges of apparently perpetual severity. I often consider the potential heartbreak and eventual disappointment of new parents of autistic children in their dealings with the medical/scientific community who admittedly know less about autism than there is to know.

I don’t mean to paint a picture of complete bleakness. When she is happy about life our daughter is a joy to behold as she uninhibitedly enjoys a favorite song, meal or movie, river raft ride or walk in the woods. So, in spite of frequent harshness of our situation, it’s not all doom and gloom. And I have no complaint about the extremely positive effect our daughter has had causing me to become a much deeper person than I wou ld have ever imagined possible. The difficulty of our situation is in fact exactly what I needed to grind away any lingering attachment to superficial being. My daughter’s enduring gift to me for posterity is to ensure to make me real. Finally. At last. Or kill me in the process.

And yet this soul whom I know as “daughter” has at times transcended her impairment in very unique and unbelievable ways. From an early age we noticed how she was prone to smile broadly at sad strangers, literally having an electrifying effect of at least temporarily transforming their sorrow to the momentary joy of an unconditional smile shared between fellow souls. As if she had turned on her love light and shined it as a beacon instinctively into the darkest corner of the room causing a spontaneous chain reaction of mutual inner effervescence. She cannot speak to express or communicate her basic needs which has caused us as parents to develop a profound sense of intuitive, non-verbal communication. A language without words. Yet filled with deep feeling. And sincerity.

In calmer moments, being cognizant of our enduring sacrifice on her behalf, she can gaze at us with a look of love and appreciation so intense and bright it lights up the room and makes us think it’s all worth every bit of the trouble.
Understandably, because of the extreme severity of such a situation many children like our daughter eventually end up drugged into submission and living in a group hom e because their parents cannot sustain tolerating the strain of such a great burden. I cannot judge others’ unique circumstances but can only speak from my own experience and understanding.

Mere philosophical theory breaks down completely as we are forced to exist at a much deeper level of functional awareness. We have no choice but to take shelter in a very real way as all pretensions fail. Literally, we must learn to “fly our own plane,” or go insane. matra sparshas tu kaunteya… is chanted like a mantra in our ashram. trnad api sunichena is sung like a hymn. Because of our daughter’s condition and subsequent vulnerabilities she requires 24/7 care-giving with absolutely no respite to us. We haven’t had a “baby-sitter” in more than a decade. I joke that we have “no respite insight.” It is undoubtedly, a very special type of consciousness, developed under extreme pressure.

Once on Sri Vyasa Puja, she said, “Prabhupada.” And once on Sri Radhastami she said “Radhe.” Each time without any external prompting. She cannot speak to express or communicate her basic needs (we’ve had to learn to be extremely intuitive in order to facilitate her) and yet at this writing she is learning to say “Hari!” Possibly, it may be the only word she ever learns in this lifetime.

Rather than a burden, she is actually my Teacher, manifest by the Divine Will, and has expertly taught me with great skill lessons about Unconditional Affecti on and practical detachment which I could have never learned from a book alone. The extreme difficulty of this severe situation is my real inner necessity. It forces me to exist at a much deeper level. Like the Vedic yogis, she is my “ring of fire.” Like the example of the tortoise in Srimad Bhagavad-gita, I can actually feel my senses beginning to retract from the sense objects. For this boon, I am most grateful to my daughter, my teacher. Without her Grace, I would be superficial, a mere surface dweller and philosophical theorist, in essence an idolator and ritualist confined by a catechism of superstition and empty ceremonialism. Some day or other, I might really learn my lessons, as my Teachers cannot Live, Learn or Love for me. A superstitious conception of existence will of course cause me to think otherwise. And the thusly corrupted mind will cleverly offer many excuses as to why I cannot simply BE a SOUL!