Category: autism

Back before everything changed, my husband and I were eating ice cream cones on a summer evening at the Baskin Robbins near our new home.  We’d walked there with our puppy, and leaned against the storefront as the sun went down, glowing warm against our faces.

Nellie pranced at our feet, lapping up drips as our ice cream melted faster than we could eat it.  We were newlyweds then, laughing, exuberant, sure of the world before us.

A woman in her fifties sat nearby smiling at us, then walked over and leaned in next to me.

“I just have to tell you,” she said confidentially, “that you and your husband are the most beautiful couple I’ve ever seen.”

I was flattered, as you may imagine, and told her so.  And, though I could not technically agree with her, I did agree in principal.  It felt as though we had it all.  I remember us that evening:  sun-kissed, confident, happy, so unprepared for what was to come.

*****

I remember as clearly a winter morning at the Northern Suburban Special Education Association, where I’d begun attending “mom and tot” classes with my son, Daniel.  I’d had some experience with classes like these with my first-born, my daughter Natalie, who was two years older.  The Park District offered forums for mothers with toddlers to meet, chat, and exchange ideas, shepherded by an early childhood educator lending tips to us new moms who wanted so badly to do it right.  Those first years after Natalie was born were the happiest days of my life.  My daughter was a beautiful, healthy baby, with a ready smile and even disposition.

The moms and tots class I attended two years later, however, was a different story.  Our children had problems we had not foreseen.  Some had Down Syndrome or were physically disabled; some used wheelchairs or leg braces; and some were like my boy.  I don’t know how those other mothers felt at these gatherings, whether they were faring better than I, whether they were rolling with the flow, as I told myself I was doing.  But I know now that I was shutting down, closing off even as I needed to open up, to greet a new way of life I hadn’t expected, but would face determined, optimistic, and positive just the same.

But that is not how it worked for me.

Daniel was almost three years old that winter morning when an NSSED therapist I barely knew told me he would never be normal.  She said it casually, bemused that I didn’t yet get it, that I hadn’t grasped this fundamental concept.  There was no room in her mind for ambivalence, for easing gradually into the dark.  Maybe she thought I had better face the truth and get with the program, and that she was qualified to tell me so.  The doctors and therapists we’d seen thus far had been able to tell us very little about the long-term outlook for our son, only that early intervention was critical.  They simply could not predict how his life might unfold, could not lay out a reasonable plan of expectation for his future.  But that threatening uncertainty was still preferable to the finality of those awful words.

That therapist was right, of course.  My son will never be normal.  He’ll never drive a car, hold an independent job, or enjoy an intimate first date.  We’ll never whoop and cheer from the audience as he accepts a degree, or host his rehearsal dinner.  It has taken me years to come to terms with these truths, but in 1994 I was not ready for the truth.  I’ve never forgotten that therapist’s words, her brutal insensitivity.  She did not even realize how utterly she had crushed me, quashing the hope I’d been clinging to:  that somehow this would all be ok, that “anything could happen”, that he’d grow out of it, or even that this was all just a dream.  It was not her child, her world spinning out of control.  She didn’t recognize how fragile my hold was then on sanity, on the need for possibility.  She didn’t know how incomprehensible this diagnosis was to me, this autism.

My denial began in earnest that day.

*****

Once Daniel’s diagnosis was established, we were quickly sucked into a special education system we never dreamed we’d get to know, swept along with our heads nodding in numb shock, grateful for the experts who gave us some direction.  But in those early days I was frozen inside, unable to be proactive for several years. I was not a vocal presence demanding treatments or inclusion from our school district.  I could hardly bring myself to learn about this disorder now central to our lives, for that would have meant embracing it.  I read what they gave me to read, of course, the wonderful, caring team at Northwestern University Speech and Language Clinic who were the first to evaluate Daniel.  I paid attention to our neurologist, our pediatrician.  I listened, I nodded, I obeyed.

Daniel and I went three mornings a week to Northwestern for speech, play and occupational therapies, and when he turned three he joined an early childhood class through NSSED.  My husband and I practiced the techniques designed to engage him at home, despite his bitter resistance. We tried to adjust our thinking, our actions, the whole course of our vague but dearly held plan for his future.  We tried to let go of the assumptions we’d had when he was born, and relinquish the dreams we didn’t even know we had for our cherished little boy.  But a wall of fierce, self-protective denial had come down around me that would stay in place for several years.

I read an article once by the psychologist Ken Moses, in which he contends that parents cannot be asked to “accept” that which is unacceptable, but instead, merely to acknowledge, that in all its injustice and mystery, it is still, unavoidably, so.  I struggled with this for years, at first believing that submitting to Daniel’s autism would mean giving up on him, would be admitting defeat before we even fought for him.  As reality inexorably crept in, I raged that it was not fair, it sucked, it simply could not be.  I wanted answers, the how and why from the God I thought I knew and trusted.  I tried every way around it that I could fathom: isolation, bitterness, prayer therapy, writing, spending, delusional thinking and endless self-pity.  I have not gone gently into the good night of autism.  But it took me years to learn how to fight productively, and understand that surrendering to the truth was the only way I could truly help Daniel, or myself.

*****

During these years I learned truths about myself as well.  I’m not unique, but spent years believing that I was, until I faced something truly exceptional, realizing only then how afraid I was to meet that challenge, how little I believed in myself, how inadequate my abilities now seemed.  Other losses further eroded the security I so urgently craved:  the collapse of my marriage, my father’s death, the slow disintegration of my mother to Alzheimer’s disease.  It all seemed too much to bear.   

“How are we supposed to keep going,” I asked myself, “to keep fighting, when we know we will not win?  How do we keep climbing, knowing we’ll never reach the top?”  How desperately I wanted someone to tell me, precisely, how to go on when despair is overwhelming; when you are physically and emotionally exhausted; when putting out fires becomes a way of life; when the rules you thought were in place change so dramatically, and the props you’ve used to make you feel good enough can no longer support you.

I don’t know if I have the answers yet, but I’m getting there.

Mine is not a story of traditional victory, of ultimately beating the odds.  We knew early on that there would be no final moment of triumph to aspire to.  My son will never be normal; I have found no magic cure for him.  But what I’ve learned, and continue to learn each day, is to manage the best I can, to keep trying to help him toward the fullest life possible.

Learning to live within new and unwelcome parameters is difficult, often heartbreaking.  But mostly, now, it’s actually ok.  Maybe I have the answers to my questions after all.  I have not given up, and most of the time I believe I’ve done the best I could.  To understand that this is enough, that this will have to be enough, is actually a relief.  Getting here has been turbulent, and painful, and I know there will be more pain to come.

But my eyes are fully open now.  And I won’t give up.