Let's face it. I've been wanting to use "purple" as my theme color for awhile now! I bet you're thinking I'm going to start right in on the topic of royalty and the privilege of being a child of the King of Kings. Not so fast. Really, the only thing I was thinking of when purple came to mind was wacky, weird, and wonderful!
Be honest. Don't you think the color purple is one which makes you sit up and really know you're alive? I recently wore a luminously vivid silk purple shirt to school, and a student commented cheerfully and with obvious approval, "I think that's the brightest shade of purple I've ever seen!" This particular student had worn a purple shirt himself on a dress-up "away game" day, and so I instantly recognized him to be "friend"and not "foe."
Wacky, weird, and wonderful. Yes, that about sums up Michael. On a day which is singed and not burnt by autism's flame, I can look all feats and failures squarely head-on, and know that my son is purple, and that it's OK to be purple. Insert thought: I must go find and re-read the book, Harold and the Purple Crayon to see if there is a special message just for me in its classic pages...
Michael is purple. Michael does purple things. I see screaming shades of purple when he does them. I feel uncontrollably purple when he does them. I become overwhelmed with purple angst when I live them. And I see purple, all shades, in others more clearly. I do not scorn the woman whose child is screaming his head off in the grocery store. I don't join in with unfeeling and chiding conversation about critiqued parents who "need to get hold of their child" or "set some limits!" After all, there is the chance that these children - are purple, too.
There are different streams of thought within the autism community, and anyone who purports to know about or care for such individuals must certainly know of the dichotomy. Of course as in all things there are varying degrees of opinions, as numerous as the talk-show hosts and guests who placate audiences with tireless discussions of all sides. But as one who lives and breathes with autism, I see two sides to this inequality, where A is not equal to B, and B is not equal to A. I perhaps belong to a third group, somewhere in the middle and struggling to see if the most lucid path veers to the left or right.
One group of people seems bent on healing, fixing, supplementing, bypassing, denying, justifying, excusing, correcting, fleeing, or ignoring autism. They are all really the same in their intent: Autism is not normal. And so we must fix it - or give up. There are nutritional deficiencies and metabolic imbalances which must be corrected. There is brain chemistry which must be optimized. There is toxic overload which must be purged and cleansed from the hypersensitive immunology of the child. There is sensory touch which is lacking due to autistic aversions to tactile stimuli. There are social skills fully undeveloped, and in need of one-on-one prompting. And there is behavior - lots of it - which must be managed through repetetive and structured training. This has been just a minute portion of the exhausting ritual we've endured in the past 16 years.
With this first group, there are the ever-increasing "miracles" one always hears about. One therapy "cures" autism, another allows a child to speak for the first time, and a third treatment spurs books to be written, and lectures given, all in an effort to arrive at a color less "weird" than purple. Articles are clipped, website links forwarded, and talk shows recorded and perused for "answers." Support groups are formed, guest speakers are commodities to be had, and conferences abound, world-wide. Doctors come alongside, modulating their preconceptions, and implementing constantly new treatments and tests. And all are trying to fix the dreaded autism before it is too late and has ravaged the world, one parent at a time.
The second group is one to which I give the highest praise and affirmation, and yet as an outsider to it, cannot fully understand. This is the growing network of high-functioning, expressive, insightful adults who have either at one time, or currently, been labeled "autistic." I came across members from this group somewhat by accident a few years ago, as I entered a chat in which the merits of certain treatments and autism therapies were being debated.
I vividly remember being referred from that page to a beautifully written website, whose pages I was not yet ready to unveil in my own heart, and whose truths pierced me such that I could not read them for very long. It was written by a mature and sensitive autistic adult, and gave a glimpse into his daily struggle for acceptance in a loveless and critical world. As I found it both stimulating and intimidating, I also found it depressing, imagining such a life continuing on, and on - for my son. I never did bookmark that website, and took the easier path of never searching for it again.
In its pages the voice of one who could just as easily be that of my very own son, should he ever be able to fully communicate his thoughts, drew shades of purple which I had never before witnessed. They told of a world I couldn't fully see or relate to, and of the reasons behind the autistic - and, in his mind, necessary - behaviors which I could merely experience as unwelcome, and base. And in these musings, written by a scholarly and insightful autistic writer, there was anger and bewilderment at the relentless quest of others outside of their community - to "fix" or "heal" autism. He was intent on espousing the relative normalcy of his "illness" - preferring to think of it not as an illness, at all. He argued simply that his behavior, wants, needs, and oddities were "his" normal. And with that, he had gracefully learned to cope.
Those who responded on this message board concurred with its host, eloquently asserting that their value as human beings was masterful and complete as they were now, with no need of change or repair. They were all offended by the world at large, being a group misunderstood, and undervalued, every step of the way as they had matured and successfully entered the communities in which they lived. Most held jobs, many had advanced degrees, all - were purple, and discussed it openly. Why wouldn't the world just let them be that wonderful creation?
So where is my position in light of these two competing attitudes? Of course I would want to hope if I could choose complete "healing" or recovery. Of course I would want to believe, because in the absence of believing there is doubt and fear. And each new "thing" that comes around the block is fodder for despair, as none of them are "our miracle" - but rather that of someone else's child. Each time we stand up, and lift our heads high with victorious expectation, we are humbled again by the stark reality of sameness, and of tireless continuance.
And so I am left as if by default with a third responsive choice, and that is the quickly deadening hope which engulfs and causes me to shiver. It has indelibly left its stain in my psyche, and I feel that I am changed forever, never to emerge fully victorious, fully free. Yet we stand because we must, or we have at very least developed the habit of standing. It may seem a stalwart demeanor to some, a reticence to move forward or to seek healing of heart at least in my own life, but the very act of standing firm has caused the blood of living hope to pool in my awkward and uncertain limbs, and I am somehow made fragile through the process.
What should be my apt response? Destroy, fix, or ignore what is purple? Or as the second group testifies, should we instead accept and live with autism without trying to change it - simply wondering why everyone else is seeing us as so purple? Or, as a reaction to which I seem to have fallen prey, do we allow the purple to fade, as a much-worn garment whose lustre and life yearn to be reborn, and yet are cast aside as to a second-hand clothes shop? When you put it that way, the choice seems ridiculous. Acceptance is the pride and splendor of the second group, the autistic individuals themselves. And if they accept their purple plight, why shouldn't we?
I lament that I cannot seem to grasp that idyllic perspective. It is just outside of my clumsy reach. I find instead that the fading garment is daily tossed aside, and then reclaimed with dignity and hesitant anticipation when I look into the heart of God, with a deeper love. Can I dare to hope that I may edge closer to a truly Divine love for my son? I believe that I have found a life journey and calling in acquiring such a depth of acceptance, and it is one for which there will be no human or material approbation or reward. But I am filled with hope.
Purple! Wow. Weird.
Wonderful.
Painting with purpose,
Elise
No comments:
Post a Comment