June 2, 2010

Present Tense

Posted in My Take on Autism tagged , at 9:35 am by autismmommytherapist

Nobody seems to agree on, well, anything in regards to autism, but I feel I can speak for my community when I make this statement: when it comes to this disorder, usually nothing is simple.

Controversies rage in almost every aspect of autism, from the cause to the cure, traditional versus alternative treatments, even whether or not it is a gift, or a curse. This last perspective has remained a bit of a conundrum to me, as despite watching both of my children succumb to its difficulties, I’m still capable of channeling shades of gray and understanding the perspective of very high-functioning individuals residing on the spectrum. I’ve read a few statements penned by extremely bright, articulate individuals who feel that autism has afforded them opportunities that would have been denied to them by possessing a neurotypical brain, who believe that without autism they never would have achieved their unique world view. I can understand that perspective, as well as their fear that a cure would mean the eventual eradication of autism entirely, as the opportunity for tests for Downs Syndrome have precluded most babies with the extra chromosome from being born. I can see that for these individuals, having a choice as to whether or not to bring babies on the spectrum into the world would feel like a rejection of who they are, perhaps an annihilation.

My issue with the gift perspective is this- if you’re mildy affected enough to be writing about autism’s bonuses, you don’t have the type of autism that has afflicted my oldest child. When Justin was diagnosed six years ago it wasn’t the fact that he possessed a label that so horrified me. Although I was a regular education teacher for years I also taught many inclusion classes, and felt very comfortable with children possessing a variety of disabilities, ranging from mild to all-consuming. Frankly, some of those children, and their families, lived far happier and more satisfying lives than some of the “normal” children I had instructed over the years. Justin’s being permanently different from the mainstream was not what bothered me.

What devastated me, what nearly consumed me at the time, was that my child suffered, and there was so little I could do about it. We immersed him in traditional therapies, tried the “autism diet” and supplements, enveloped him in consistency, and love. None of those approaches could quell the diarrhea and constipation his pediatrician and specialists could not dissipate for years. None of the therapies afforded him the ability to communicate with his mouth, rather than his hands, his often angry hands. None of our therapies were ever able to quench his desire to spin, to obsess on a scene in a movie, or to stim on the peculiar sound emitted by one of his favorite perseverative toys. Nothing could eradicate it all, and as a result, he missed out on sampling the most basic joys of his peers, felt frustration from not being able to convey his wishes to those around him, and experienced physical pain as well from years of stomach troubles. For Justin, autism had no “up side”. He truly suffered, and to a much lesser extent, still does today as well.

Perhaps I will feel differently with my second son Zachary, who is mildly autistic. Zachary’s autism presented completely differently than my first child’s, whom I believe exhibited signs as early as six months of age. Zach, with the exception of a slight speech delay, developed normally until twenty months of age, then regressed into a child with a five-word vocabulary who regarded the world with a dull countenance and an absence of joy. He is also the child who we believe responded to the autism diet and ABA therapy so well that inside of a year he was singing Christmas carols better than his exhausted parents, and ordering us around with impunity. I feel Zach will lead an independent life someday, but will always retain certain remnants of the disorder, which for him, may be a positive thing. At two-and-a-half he could name every train, caboose and tender on Thomas the Train’s Island of Sodor, and he recalls the lyrics to songs so well that he might perform better than half the contestants on American Idol did this season. He makes astonishing connections at times, and has a memory that puts a herd of elephants to shame. Seeing as he inherited neither ability from his mother, perhaps autism is the culprit, and I am hopeful he will welcome those gifts in the years to come, and be able to employ them well.

This eventuality remains to be seen however, and as I have learned with autism, and life in general, never to get too comfortable, I’m not counting on it. I’m not sure I will ever be able to regard autism as a gift when it comes to my sons, but I do believe, since it’s invaded my life 24/7, that I need to discern something positive from the experience, and I’m certain other parents living with this disorder need to as well. Besides, I still like presents, and God knows with autism and children in general, we all deserve them, so why deny ourselves?

The main gift I have chosen to give myself, and I wish strongly I could impart it upon every parent of a disabled child I meet, is the ability to relinquish guilt permanently. For months after Justin’s diagnosis I tortured myself as to how autism had come to impose itself upon my son. Was it my husband’s genes?  Was it mine?  Was it the flu shot?  Did I spend too much time lingering in the fish section of Whole Foods talking to my friends on my cell phone?

I scoured the internet for causes for many nights after D Day, and if I could have Googled “Reason for Justin McCafferty’s getting screwed” I gladly would have done so, whatever the result. Part of the agony for me was the not knowing. It seemed so over the top to have this situation inflicted on my family without being able to understand why. I really, really, resented it.

Eventually, I came to understand that what was at the heart of my need to know, my pursuit of “why”, was the fact I had so little control over the outcome of the situation. Sure, we would get all the help Justin needed, and provide him with the best care possible, but intrinsically I knew from my teaching days that ultimately, the arc of Justin’s progress would in large measure be left to his discretion, his desire, and his ability. One of my greatest challenges was accepting I couldn’t “fix it”, as I had fixed so many other things in my life before. I had to accept that spending even one second feeling guilty over whatever contribution I had made to my son’s disorder was actually hurting him, as that was one less second I was focused on eradicating undesirable behaviors, assisting him in finding pleasure in the give and take of discourse, or simply communicating to him how proud I was of his efforts. I wasn’t being a good mother by torturing myself. I would be a good mother by letting it all go.

And I am forced to admit, albeit grudgingly, that I have extrapolated this shedding of guilt to all areas of my life, and that I never would have come to this juncture so early, or perhaps at all, had it not been for autism insinuating its way into my world so completely, and so irrevocably. It has forced me to regard almost every belief I held dear in a different way, turned upside down my preconceptions about children and childhood, what constitutes a good parent, a competent mother. It has relieved me of a burden, the second-guessing of choices I’ve made in the past, and ones I’m certain to make in the future. It has freed me from my own form of worthless perserveration, and enabled me to live more in the present, to focus purely on making my sons’ lives better, and mine more fulfilling as well.

I doubt I’ll ever regard autism as a gift for my children, but it’s permitted me to inhabit a guilt-free zone, and for that I am grateful. I hope, as you’re reading this, I can impart this gift to you as well.

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10 Comments »

  1. Mom said,

    Beautifully said.

  2. misifusa said,

    The beauty in your words is astonishing ~ as guilt free is the way to be. Enjoy the moment, the present. xo

  3. Kristin said,

    I always thought “the gift of autism” was a crock. My kids went from happy active and typical, to paced out, gut issues, sensory disorders and movement disorders. Some gift! What I see as the “gifts” of autism are the wonderful and inspiring people that I have met who are also trying to help their child or children. We are doing everything we can for our kids, but also enjoying every moment we have. I never would have thought, looking back, that we would be having so much fun right now. When you mentioned “living in the present”, I could not have agreed more. Maybe the gift of autism is not how it changes your child, but how it changes you.

    • That last sentence in particular was perfect. It’s the only way I can get my head around all of this. Thank you for your sentiments, and for responding!

  4. Anita said,

    One does never know what curve ball will be thrown at you in life…I think most people experience some type of deviance from what they perceived their life to be. Seeing, understanding or at least realizing some kind of benefit I feel can ease the soul. Take that ease and run with it!

  5. Kathy Milmore said,

    Wow. Thought provoking words.


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