By Ann. A. Mom
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.
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).
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.