By Jagabandhu das
It’s been another one of those weeks wherein caring for our severely autistic/mentally daughter has very nearly eclipsed all other activities. Again. Same as every minute of every day. For years on end. In order that we might truly learn and grow deeper with sincere affection from the difficult experience which the Supreme Lord has sent as mercy to reform us from all selfish considerations. Or complaint (tat te nukumpam…) about the severe circumstance we must necessarily endure. As each endless day of severest ordeal crawls on it’s long journey into darkest night. Iron character is forged in the fire of ordeal. We are thusly compelled to continue anew each morning with our impossible life. As if the material energy had focused like a club specifically fashioned to brutally beat the spirit of mundane enjoyment completely from our consciousness. In order to cause all superficiality of being to be harshly scoured like a veneer from our souls.
Needless to say, we don’t worry much about threats of nuclear war, global famine or possible pandemics. Because universal devastation is continually revisited upon us as a constant daily occurrence within our household. As if this life were only training for the next hardship. And even the promise of eventual death is no guarantee that the next life will be any better (“Hello Mr. Sunshine!”) in our learning sojourn into Forever. And our journey to Love.
Much of our present difficulty is pertaining to our daughter’s full onset of OCD (Obsessive Compulsive Disorder) with her becoming an adult. Apparently, with adulthood various symptoms of OCD manifest within childhood can often become intensified and more severe. This has certainly been the case with our daughter who now has become completely obsessed with endlessly repeating each and every ordinary everyday activity. As if she were trapped in a rut of endless repetition—while constantly looking to us to reassure and somehow facilitate her every movement. Like she had become a zombie who also takes a certain perverse glee in observing our frustrations as we have to repeatedly urge her to take each bite of food. And each sip of water.
After finally being toilet-trained at nine years old (we used to jokingly refer to this important day as Independence Day because it happened on the Fourth of July) her obsessive compulsions have nearly caused this to be lost as she requires constant prompting for every little thing. And I mean every little thing. After being able to dress herself since early childhood—she is now unable to do so. Or completely unwilling—at least. And gleefully resists attempts to help her do what she already knew how to do. Each moment only feels like a lifetime. Her OCD has caused her to often violently demand (for her mother especially) to be forced to fulfill her every little need. As we dance madly backwards on thin ice trying to avoid potentially dangerous emotional outbursts. While simultaneously worrying about the neighbors might “think” of the ongoing litany of accompanying primal screams (“The hurricane inside the house has just started WWIII again—would someone please shut the windows!”).
OCD can be treated in cognitive adults who wish to achieve some measure of rehabilitative therapy. Of their own volition. Our child is more like a chimpanzee. Wild. And almost without any language skills whatsover. There is absolutely no possibility of a medical professional trying to “communicate” or reason with her about getting help overcoming an disorder which she not only doesn’t see as a problem—but actually a cause of self-stimulation. This combined with the self-stimulating textbook SIB (Self-Injurious Behavior) which she exhibits in a severe way common to many autistics. Apparently many severely autistic people eventually have all their all their teeth removed after they’ve finally picked away at their gumlines to expose raw nerves at the root. Like camels who enjoy eating thorns because of the bloody taste and “pleasurable” pain which is thereby incurred.
Whew! Thank God for small slivers! Life stings. And how was your day?
In the past couple of years that I’ve been publishing articles for the worldwide Hare Krishna community, I have often wondered about other special needs children (and their brave-hearted loving parents), but have heard very little about them. In fact, almost nothing as if they were merely some unpleasantness to be marginalized, discounted and swept beneath the “carpet.” Some time ago, after reading “Futility is the Principle,” parents of a special needs child contacted me for advice. From what they told me of their impending ordeal they were handling it quite well in a Krishna Conscious way. But were nonetheless very dismayed by the apparent lack of compassion which they had experienced from “devotee” friends in their local temple community. And they were very surprised to discover that non-devotee “karmis” were actually more compassionate and sympathetic to their parenting ordeal. Although the name of their child has been changed in respect for their privacy and anonymity what follows is the parent-to-parent advice I gave them. May Sri Guru and the Supreme Lord Shri Krishna Chaitanyadev kindly bless them and other loving parents of special needs children with ever deeper spiritual understanding with which to embrace their difficulty and lovingly raise their children.
It sounds like your long first two years with “Hari” is more physically severe than what we initially experienced with our daughter (who has become more difficult as she has grown older, larger and bigger). Hopefully, you have a good relationship with your pediatrician. This can be very helpful. When your son begins to walk pay special attention to toe-walking which can denote autism. Because our daughter cannot speak we haven’t been able to have her vision tested. But as your child’s speech hopefully develops it might be more possible for you to do so.
I’m sorry to hear of the obvious lack of real compassion which you have experienced with those local practitioners of Krishna Consciousness with whom you have contact. It is shocking to perceive firsthand that those who should be repositories of Mercy and Divine Grace can sometimes be so devoid of basic compassion. Unfortunately, this stonehearted mood appears to have permeated much of the world in a way that is almost too awkwardly painful to mention.
Our own experience is that by having a child which requires special attention and greater affection from the parents forces us to go to a much deeper place of real love which transcends philosophical theory. Those who make a mere catechism of philosophical theory (without actual realization and maturity of insight) cannot appreciate or understand the potentially positive transformation unconditional affection may have upon the heart. Please forgive them for what they obviously do not have the “eyes” to “see.” (All of us can only ” see” what we can “see.” And “be” what we can “be.”)
What advice I would give to good parents like yourselves with a very young child with special needs and developmental delay is to love them with all your heart in an extremely unconditional way. Such affection with the help of Supersoul (the Guru within) will teach you deep things which might not be possible to learn from the Scriptures alone (or from ceremonial religiosity alone).
Resist the natural temptation to compare your child with any other “normal” children. You are souls. You must see this child as a soul which might be helped greatly by the influence of transcendental sound vibration erupting from your own hearts and out into the ether which surrounds you in your own home. Make your child like a Deity by your devotions towards whom you are constantly singing the kirtan of Sri Hari! Formal considerations of official puja or temple worship may become less possible because of the natural constraints of your own situation. This makes it so as a soul you must make the vibration of Hari kirtan from your own heart, lungs and tongue a constant existential salient point until the Holy Name Itself becomes your Deity. Please know that this child who has appeared to you with the name “Hari” is a great Mercy upon you so that you will be completely consumed with the Holy Name “Hari” which you will be sure to hear, chant and r emember with great forebearance.
Depending on degree of severity in your child’s impairment, possibly some help might be derived from conventional medicine or alternative therapies. With affectionate discernment avail yourselves of what help you might be able to get, but don’t be disappointed if convention largely fails you in your noble sojourn to find help for your child. Be wary of alternative “therapies” which self-promote “cures” under the auspices of an expensive price tag (which often inadvertently exposes insipid profit motivations by charlatans). And if possible avoid conventional medicine’s standard approach to prescribe pharmaceutical ameliorations (as a last resort they wanted to prescribe respirdol for our daughter which is a powerful anti-psychotic with potentially fatal side effects like diabetes and an otherwise rare form of liver cancer).
At first our daughter was diagnosed with PDD (Pervasive Developmental Delay) at the age of three. At age four we received the full-on diagnosis of autism. Nothing has helped us more than being literally forced to “fly our own planes” and become the souls we really were. Finally. After all. At last.
From such informal inspirational depth of being we can “see” that as loving parents we are indeed fully-equipped as jiva souls to deal with all adversity (‘adversiddhi?”) which comes our way by the Sweet Will of Providence. And that such external difficulty is not only not a “bad” thing but is actually our true inmost necessity and requirement come to help us become reformed within (tat te nukumpam…) and awakened with actual spiritual consciousness in a way that is completely transcendental to any external considerations whatsoever. If we can catch the gist of such a penetrating idea and embrace our apparent hardship with grace, courage and compassion it can transform our world in an extremely positive way.
Please know that I also suffered a great deal emotionally as my long sought after first born child was diagnosed as autistic and mentally retarded. They might as well have given me the news of her death, which is how it felt at first. I was emotionally devastated by this and it very nearly ruined my life at the time. I went from being a top Ford salesman to being virtually unable to sell anything (after a lifetime of sales work). I cried a lot with self-pity, “Why me, God?” This caused me to call out to Krishna as if I was at the time of my own death. Eventually, by His Grace I evolved from within to divest myself of all self-pity (as the most useless human emotion) by harmonizing spiritually from deep within until I could ask, “Why not me, God?”
Unfortunately, we are also very shocked to see that some “devotees” have very little compassion towards each other or especially towards the “meat-eating, demon, karmis” who they often appear to like sneering down their noses at with impervious disdain. For many years I have not viewed other souls who do not know of Krishna consciousness with such hateful disregard. I see “non-devotees” as souls in forgetfulness of their true inner natures. Yet, I nonetheless feel compelled to share affectionate friendship with them. As I always seek the goodness within others as fragmental portions of the same Supreme Spirit which suffuses all beings and all things. And I hope that by my unconditional friendship with them t hey might eventually become positively influenced towards real spiritual awakenment in a very positive way.
Please forgive me for saying that those persons who demonstrate a manifest lack of genuine concern for the suffering of others are themselves suffering from want of compassion in their lives which are dried up by extreme tendencies towards philosophical theory and subsequent heartless renunciation. Please show them your unconditional compassion and affection also.