By Ann. A. Mom
I cringe a bit lately when I read stories about recovered children. I'm ashamed to admit that these stories conjure up an enormous amount of self-pity and just plain jealousy in me. This hasn't, however, always been the case.
Years ago, recovery stories used to fill me with hope for my son John, who was diagnosed with severe autism back in 2002. I still remember when I first read about the success of the GFCF diet. I vividly recall standing in the natural foods aisle at the grocery store, looking at what was then a very miniscule selection of gluten-free foods (my how these selections have grown over the years!), and seeing eight or nine developmentally disabled young adults on a group outing, being led through the store with the guidance of an assistant. One of the young men, maybe about 21 years old with wavy blond hair, stopped walking and stood just inches away from me, with his fingers curled into a strange position beside his face while he fixed his gaze upon some product on the shelf before us, and moaned a little. I stood there trembling a bit, in outright fear of the future, and then pulled myself together and told myself, "John won't turn out like this. We can change his diet and he will get better!". I filled my shopping cart with gluten-free and casein-free items and drove home filled with hope.
The early years of autism went by in a blur of special diets, sleepless nights, visits to autism specialists, blood draws and lab results, countertops filled with an ever-increasing selection of supplements, middle-of-the-night tip toe visits into John's bedroom to give B12 injections without waking him, ABA therapists marching in and out the door, puzzles and fine-motor manipulatives and laminated matching cards covering every square inch of the house...you all know the scene. Yet despite all these efforts, along with time spent bouncing around from one inappropriate educational placement to another, it seemed that we still had an incredibly long way to go. Recovery from autism was nowhere on the horizon. I started to identify less and less with the parents who'd seen overnight success with simple dietary intervention, and found myself spending more and more time on the message boards for those with the so-called 'tough nut', non-responder kids. Sure, we had gotten a little bit of functional language, but not nearly enough to help him survive independently. Cognitive skills remained a very real struggle. Behaviors would improve for awhile, only to plummet back into extreme obsessions or horrific meltdowns. All in all, it had been quite disappointing, as well as enormously expensive.
I'm pretty sure I did what any normal parent might have done under similar circumstances: I became a bit jaded and disgusted with the whole ordeal. In between praising my son for his accomplishments, I am fairly certain I also gave him some looks that demonstrated disapproval and frustration. I know in my mind I compared him unfavorably to other 'normal' kids his age, and even to children his own age who had autism. I didn't handle each and every tantrum with patience and a willingness to understand; in fact, I distinctly recall some blood-curdling screams coming from my direction. I'm pretty sure that by this point in our autism journey, I was not giving off too many of those warm and fuzzy maternal feelings I had initially felt for my son. In a nutshell, I was seriously burned out.
But as we all know, life has a way of stepping in to wake us up, especially when we most need it and least expect it.
Like so many kids with autism, John has always had a love affair with water.
We happen to be especially fortunate in that my parents' house is situated on a small lake. A thrilling diversion for John has always been to spend the day at the lake, which is what we were doing on this particular August afternoon. I was sitting in a lawn chair on the beach, talking with my mother who sat beside me. Our conversation drifted from autism to books we'd just read, to recent happenings with family members and relatives. (I had been out of the familial loop for almost a decade now, as John's severe sensory issues have always made it impossible for us to attend family functions.) All the while, we were casually watching John and my husband playing in the water. My husband would alternate between falling forward and backward into the water, making a huge splash as he submerged underwater and came back up. John would laugh with glee, posturing his hands near his face in his usual display of pure delight. Then John would take his turn (turn-taking - hey, another goal we could check off as mastered! Hooray!). He would stand straight up, fall like a board into the water, going under and coming back up, with a quick look around for admiring eyes and applause from us onshore. A perfect day at the beach, enjoying a rather typical childhood activity, with me getting a chance to actually sit down and converse with another adult - not a common occurrence for those of us who are autism parents.
My husband went underwater again, and stayed under for a bit longer than usual. John apparently decided it was a long enough wait for Daddy, and dove underwater while my husband was still submerged. My mom and I watched from shore, idly chatting, until we both sensed at the same time that something was clearly amiss. John was not coming back up. My husband had since resurfaced and was wiping the water from his face, looking around for John. I leapt off my chair and ran to the water. Together we reached around underwater and lifted John off the sandy lake bottom, his body limp and extremely heavy. As John's head slumped backward, my husband and I looked at each other in sheer horror; our only goal now was to carry his body the fifteen foot stretch back to shore. Suddenly, his 90 pounds of solid muscle slipped out of our grasp and fell back under water, and we quickly pulled him up again as the sand raked its way through the skin on our arms and legs.
In what must have appeared to be the world's clumsiest, most pathetic rescue, we finally managed to reach the shoreline and drop John onto the sandy beach. By this time, he was simply a lump of dead weight, not breathing, eyes closed, his skin a cross between pale blue and ghostly white. I screamed to my mom, "Call 911" and she quickly ran off to find the telephone. On my knees, crouching over what appreared to me to be my son's dead body, a thought lodged itself into my mind: This is IT? This is the end? Only eight short years of life with this beautiful child, and I have spent most of them trying to fix him? He is going to die believing that I never thought he was good enough.
I despised myself for ever thinking badly of John. Here on the ground before me was a child who would offer a smile to anyone on earth, regardless of their flaws or shortcomings. He judged no one. He would often walk up to elderly people whom he'd just met and offer them a handshake. He never held a grudge; after any conflict, he would gently tap our arms in a gesture of peace and forgiveness. Without even speaking, he managed to make friends wherever he went. How dare I presume he was not good enough?
I desperately began trying to recall what I had learned years ago in CPR training. My God, at least twenty five years had passed since I nonchalantly muddled my way through one of those classes with those creepy dummies dressed in sweat suits. Back then, the main message I took away from that class was how outrageously funny my girlfriends and I thought the obligatory "Annie, Annie, are you okay?" question was. (One girl from our gang was named Annie.) Christ, I even owned a How to Save Your Child first aid video which I bought after a marble-choking incident when John was three, but with the incessant demands of autism, I never got a chance to watch it. Now here I was crouched before my apparently dying child, with my adrenaline-loaded brain racing through options such as "clear the airway", "give 'x' number of breaths" (no idea how many), "give chest compressions" (again, how many?), "turn the body on its side for drowning victims", the list went on and on. I performed them all, in probably the most botched and haphazard manner possible, all the while believing that John was, if not dying, then already dead. I even prayed. I'm quite ashamed to admit to that one; as a Philosophy major with an emphasis on existentialism, I had renounced the existence of God way back in college, declaring myself an atheist (think Recovering Catholic).
So here I was, praying to a God I did not believe in, giving mouth-to-mouth resuscitation to my cold and bluish son, both of us soaking wet and covered with sand and bloody scrapes. I never heard the ambulance and police car sirens, I never looked up to see where my husband and mother were. I was engaged in a serious battle with myself for ever having made this angelic child believe he was not good enough just as he was. I chastised myself for each and every one of the disappointing looks I must have directed toward him, from the less than stellar ABA sessions to the unruly behaviors in the grocery stores, to the violent tantrums that were thrown during die-off reactions from antifungals, antibacterials, anti-you-name-it's. I had been, I surmised, a horrible mother.
Whatever act of nature stepped in next (God? Luck? Certainly not my spastic CPR efforts), John's eyelids fluttered a bit, he took a breath on his own, and opened his eyes. He vacantly stared at me, groaned, and began to slowly move his body. He was alive. He was ALIVE!
I was going to get a second chance. A chance to love him and accept him, severe autism and all. A chance to endure the maddening OCD rituals, the restrictive diet, the tantrums, the hitting, the pinching, the laughter, and the look of absolute trust when his eyes meet mine. A chance to show him that he is not inherently flawed, but rather that he is loved unconditionally.
In the days and weeks following the accident, I walked around in a state of shock and utter despair. Not only had I screwed up big time by allowing my CPR skills to lapse and by not staying close enough to John while he was swimming, but worse, I felt as though I had betrayed my son with my non-stop efforts to fix him. I started to wonder if this is what 'they' meant; I began to seriously think about those folks out there who condemn us for attempting to fix our children. Maybe they were right after all. Maybe just embracing autism and accepting our children exactly as they are really was the way to go. Gravely, I asked myself, should I stop trying to treat John's medical problems, should I allow his autistic behaviors to run their course, should I give up on trying to reverse the damage done to his entire biological system? Should I simply let him be as he is, and enjoy life in whatever way he can? In some way, taking this route suddenly made sense to me. And yet...
In theory, I suppose it would have made for some interesting material to ponder over in a few more Ethics classes, but in reality, I had before me a child who was (and is) medically ill. How could I ignore all those lab results that covered my desk and took up space on my computer - those test results that showed multiple serious food allergies, or the colorfully printed reports that revealed a half-page long list of pathogenic gut bugs lurking in his GI tract? Or the tests that indicated intestinal inflammation and severe malabsorption of nutrients? And was I just supposed to ignore all the physical symptoms like the strange rashes and the abdominal bloating that made him look like he was forever eight months pregnant? Or the headaches so severe that he would often cry "head hurt" and slam his head so hard he would leave dents in the wall?
No, in the case of my particular child, ignoring all these medical issues was in my opinion simply not an option. And furthermore, I couldn't ignore the fact that much of the dietary and nutritional intervention actually had helped in some small way. No, he wasn't recovered. Not even close. But I had to admit that he was somewhat better off than when we began our biomed journey. Gone were the years of incessant diarrhea (which 'coincidentally' began directly after his MMR immunization), thanks to a restricted diet and supplements. Gone were the perpetually dilated pupils and those horrific nights filled with endless screaming. Gone were the 104 degree fevers that sprang up out of nowhere every two or three nights. Gone were the hours and days in which he avoided us and preferred to go off somewhere and spend his time utterly alone, quietly banging his head on the wall. In place of those problems, John now had fairly good eye contact, a small amount of spontaneous speech, a strong desire to socialize, and a budding sense of humor. But most significant of all, he no longer appeared to be in constant physical pain.
The answer was clear: it was worth it; it had been the right path to take for this particular child. I can't predict the future, but I don't think we will be one of those miraculous recovery stories. We've made baby steps in our attempts at recovery, but we are nowhere near the finish line called normalcy. Does that mean we should stop trying? I don't think so. What I do realize now is that in all my frenzied attempts to resolve John's medical and behavioral issues, I had gradually ended up overlooking a huge part of the equation: his emotional well-being. But I also know that all the love and affection in the world isn't going to repair his inflamed and damaged brain and gut. And I know for certain now that when I try to resolve the medical problems that contribute to his behavioral problems, it doesn't mean I dislike who he is and want him to be someone else; it means I desperately long for him to have the life he was originally meant to have, unhindered by all the medical conditions that are holding him back and causing him to suffer.
And so, during these past few years I have been working on discovering how to walk that very fine line between repairing the physical and mental damage done to my child, and still letting him know he is flawless just as he exists right now. I still eat, sleep and breathe biomedical treatments. I still research and where appropriate (and affordable), try many of the ever-evolving forms of therapy for him. And to paraphrase the words of another biomed parent, if rolling around in cow dung would help my kid get better, I'd do that in a heartbeat. But what has changed since the incident is a bit more of an examination into how each approach directly affects John. Rather than a fiercely determined, experts-say-this-will-work approach, I'm a little more careful about how each newly tried treatment or therapy makes John feel. Physically, yes, but more importantly, emotionally and spiritually. And if that means cutting back on a supplement that is supposed to help him but clearly makes him feel like crap, or if it means we spend a little less time on reading sight words and a little more time on giggling, then so be it. Quite simply, I'm learning to ask this question: am I pushing him away, making him feel more alone and inadequate, or am I helping to make him feel more connected to us and everyone in the world?
More than three and a half years have passed since the near-drowning, and many of the details of that day have faded from my memory, but I do recall one thing for certain, and even though this seems so utterly obvious, I'll say it anyway: I did not (and do not) want him to die. And even though a huge chunk of the daily grind involved in parenting a child with autism can be immensely frustrating and downright maddening (and I'm writing this on a good day!), I keep reminding myself to stop focusing on the future and my desperate longing for John's eventual recovery, and I'm learning to focus instead on the experiences we are sharing moment to moment. And maybe next time, it won't take a near-fatal accident to get me to pay attention to what is really important. Whether or not we ever reach that elusive goal of autism recovery, I hope that in the end I could say that I spent my minutes and hours and days enjoying my son for who he is right now. I guess we are in it for the long haul, and we'll keep stumbling along, sometimes falling, sometimes getting lost, on this path to recovery. Only now, I'm making sure we remember to stop and admire some of the scenery along the way.