I wrote this essay 12 years ago, and am struck by how much has changed since that time, and how much is still the same.
The call from my son’s teacher caught me off guard that Tuesday afternoon. Daniel had bitten again, this time another child, his peer buddy from the integrated classroom.
Despite a history of such incidents, the news was a blow, and I chastised myself for breaking down. This was old ground, after all. My son is 11 years old, and I am seasoned at this game, an old hand at the mercurial nature of this disorder. An expert at setbacks, of despairing quietly alone, or ranting wildly to anyone at hand. Of trying new tactics and behavior plans, of adjusting medication, of learning physical restraints to subdue without injury.
I am an veteran now, of autism: hanging on, living through, never, never giving up.
My son had excelled in recent months, with a new interest in words and flashcards, proficiency on the computer, the endearing habit of shadowing me as I moved throughout our home. More than ever before he sought our company, remarkable in relation to the isolated, self-contained world he so often preferred. These modest gains were welcome respite from the struggles with behavior, the anxiety that pervaded my thoughts each day.
Now his progress seemed a cruel sham.
“I was set up,” I thought desperately, as his teacher detailed the circumstances of the latest incident. “He is past that now, he must be past that now.”
The “bitee,” my son’s peer buddy, was just fine, handling this un-buddy-like display with surprising maturity, testimony, perhaps, to sensitivity training: the blending of children like my boy with normally developing children, whose ups and downs do not include raging, aggressive outbursts, like the one later that same Tuesday morning during community training at the mall. That episode required full body restraint, twice, by his teacher, in the middle of the food court.
People stared, of course, and wondered what was wrong with my child, who appears normal, on the surface; who is, in fact, beautiful. I can say that, you know, unashamed: he is beautiful. He has that going for him.
****
We are working on the animal cards tonight. He struggles to decipher the name of the animal printed on one side, waiting for the moment I turn the card, and he sees the picture, for he knows dozens of animals now by sight.
“Deh.” “Rahba.” “Tee-ah”. Deer. Rabbit. Tiger. Speech apraxia makes discerning his words difficult, but I understand him. He is learning. He watches my lips for a hint: earnest, heartrending, trying so hard to gain a skill so burdensome.
“Cah.” “Whey.” Cat. Whale.
Good job, Daniel. High five.
****
I fear, in the bleak moments like Tuesday afternoon, that this disorder will engulf me, the person I could have become washed away by the demands of caring for this boy, of loving him so dearly. I see myself forced to assume a role I’m incapable of performing, certainly not performing well. My hold is weakening on the half-formed dream that someday – soon – I’ll begin my real life, my chance to become the person I’d envisioned fading with each passing day: a person of worth, of accomplishment, of substance.
Reading the loose script drafted for my son and me, I sense that key themes of my life have already been written, that I will not so much forge my own identity as step faltering into one chosen on my behalf. Ready or not, I must adapt: as a warrior, an advocate, a wretched Sisyphus pushing a rock up a hill, laden by numb certainty that it will fall, again, and again, and again. I know now that another teacher’s call will come, another incident demanding attention, or remedy, or stop-gap solution, sapping the energy and time and will to discover the real person I was supposed to be.
Other parents seem to manage better than I do, adjusting to these circumstances more gracefully, understanding, perhaps, that success is most fully measured by our ability to meet with dignity the unwelcome demands which touch all our lives. I am ashamed of my struggle to find meaning from this challenge. God picked me, after all, to mother this special child, so He must think I’m very special. Or so I’ve been told. Sure, I wanted to be special; this just isn’t the kind of special I had in mind.
I’d rather cling to the clouding image of the life I thought I’d lead, grasping an ice sculpture after the party when the guests are gone, as it slowly melts in my hands, little pieces of my life dripping away until its shape is unrecognizable. Oh, yes, I want to hold on. Denial is preferable to facing the dark fear that my legacy will be my failure to give my son a normal life; that even my profound love for him will not make him well; that the best I can do is keep pushing a rock and never give up.
****
“Zee-ah.” “Duh.” Zebra. Duck. Always tap the raccoon card because its tail is distinctive. Unlikely to read by conventional methods, Daniel progresses slowly, one word at a time. We hope to build a sight vocabulary through painstaking repetition. “Aight.” Alligator. I stroke his neck when we come to giraffe and comment, “See how long this is!” As I turn the next card he watches my face and I want so much to cheat and help him. “Wah,” he says. Walrus! There is no joy more stunning than his pride as I cry with delight, “Good boy, Daniel! My smart, beautiful boy!” You will read someday if it takes us ten years. You can learn to read …
****
Oh, and they say that God does for us what we can’t do for ourselves. Kicking and screaming, it seems I am becoming what I wanted to be all along. What a painful path to understanding that while I longed to be “exceptional,” I was unprepared for circumstances that truly are so. How slow I’ve been to recognize that the challenges I’ve been fighting have made me more than I was, forced me to become a woman with more on her mind than what to serve at her next dinner party. The real life I’ve been waiting for is here, with these flashcards, and they are my salvation.
****
It’s a difficult evening, and we are alone together. Undefined discontent, expressed through Daniel’s whining and floor-flopping, has been simmering all afternoon. “Just an hour until bedtime,” I tell myself. “Just an hour more to go.”
The phone rings, and I converse distractedly with a friend. Daniel joins me on the sofa, back arching and crabby, thrusting a packet of flashcards in my lap. They are the more difficult set of animals, words he has not yet mastered. I would have preferred a more familiar exercise to calm him and possibly avert a tantrum. Winding down my conversation I begin holding up cards, the pictures facing away from him, trying to concentrate on my friend’s words. I hear my son’s frustration as he struggles with a word he hasn’t memorized. And giving him now my full attention I see him tapping his neck.
Giraffe. He recognizes the word giraffe.
The rock doesn’t seem so heavy just now.
We went up the hill today.
Beautiful writing again, Kristen. I am curious, though, as to what you would see is still the same and what has changed. I found myself reading each line and wondering whether you’d still feel that particular line to be true today. There’s a line from Sue Bender’s work that says, “Nothing you are doing is wasted time.” I thought of that line when I pictured you pushing that rock up the hill and hoped that you realize the beauty and importance and value of even the most mundane or repetitive things you do. Love to you, dear friend.
As always, your comments are insightful, Kary. When he was 11 years old I couldn’t imagine Daniel living as he is now, away from home for seven years, away from my care, even as I knew that day would eventually come. Our relationship is so different now, but the longing for his welfare remains, as does my worry about his future. That will never go away. It’s hard now to separate the individual I am from my role as mother, as I’m sure most mothers feel the same. The stark desperation I felt back then is no longer so acute, but I’m more wary now than I used to be, before autism came into our lives. Less self-pitying, I hope (debatable, perhaps) but getting there. For all the “hopes adjusted downward,” (one of my favorite David Royko lines) I wouldn’t change a minute of the time we spent with those flashcards. Daniel never learned to read (yet…) but the time we spent trying are some of my best memories. Thanks for reading, dear friend, and helping me along a path of thoughtfulness. xo
Kristen,
Poignant. My hope for you and Daniel is that you keep going up that hill. Daniel is a beautiful boy.
-Alyson
Thank you, Alyson, for your good wishes. We’ll keep going up the hill, and the beauty part is that Daniel is learning to climb on his own, a little at a time. Thanks for reading!
Don’t know how you manage to capture the honest, hard truth of it all with something so beautifully written. Made me cry, of course. Made me feel very good to hear it said. You are exceptional.
Ellen, your comment made me think of all the beauty inherent in our challenges with our sons, even during the very worst, most painful passages. Maybe that is why the moments of grace touch us so deeply, because they are so often overshadowed by the hard truths. Thank you so much for reading, for sharing the long journey with me. I know you understand, all too well.
Funny how the more things change, the more they seem to stay the same. I think I remember you reading this piece at our group many years ago but it still brings back a familiar chill. Even though I have accepted that caring for special needs children is a lifestyle and not a stage, the thoughts and feelings you so eloquently shared still ring true today and probably always will.
On a lighter note, I have to smile at mantra we repeat all these years later. ‘At least he has that.’
Marla, I do think I read this at one of our groups — lucky for readers of this blog, I edited it out a bit. 🙂 I love your phrasing “caring for a special needs child is a lifestyle, not a stage.” I guess that’s what I was mourning back then: the relative carelessness with which I expected to experience adulthood. In many ways I am grateful that didn’t turn out to be my path. It took a lot of wailing and self-pity to get to this point, of course (much of which you bore witness to over the years — thank you). And yes: “at least he has that…” You make me laugh even when I’m crying. xo
Such an eloquent, moving piece, Kristen. I feel the same. Whatever idea I had of the “person I’d become,” it was pretty shallow, really. Some are born deep, some achieve depth, but I know I had depth thrust upon me, very unwillingly. Thanks for this lovely essay!
I love the way you put it, “had depth trust upon me, very unwillingly.” I still don’t know if, after all this time, I can consider myself “deep” at all! And I cringe remembering how painfully I struggled, how much self-pity I wallowed in. But I forgive myself more these days, understanding that so much of my reaction was born of fear: that I couldn’t live up to my son’s needs, that I would fail him, again and again. Thank you so much for reading, and taking time to comment.