September 21, 2017
Here is a scene: I am sitting in Boston’s Public Gardens on a temperate summer day. A busker’s guitar can be heard in the near distance. A comfortable breeze rustles the leaves of the trees above me. People are laughing, gathering, enjoying this beautiful day outdoors. All except one. There is a young blonde child, no longer a baby. He’s clearly of walking age. But he has no words yet either. He’s strapped into a red stroller while his family sits on a nearby blanket. And he’s crying. Whenever this child cries, my own eyes well with tears. Can’t you help him? I want to ask his too relaxed parents. How can you just let him cry? He is scared or uncomfortable, something. He needs you. Can’t you see that? Why I’m so bothered by this child isn’t yet clear to me.
I am the mother of two children. A daughter: older, verbal, astute, and expressive. And now that she is 12, volatile and moody. As her uptight mother, I am her problem and she is mine. I love her dearly. She is my child at home.
I’m also the mother of a silent child, my son. He with the flat expression, he with the beautiful but inscrutable face. Our son does not live with us anymore. He is away—at a home with other boys like him, supervised by a staff of padded professionals, who know he can bite and pinch and hit, but who don’t feel sad when he does—who know he can also stroke a blanket softly and coo sweetly, but who don’t feel a deep love when he does. These staff people spend more hours a week with this boy than I do, which seems, at its heart, simply wrong.
I should add, that in just a few weeks this boy will be 10 years old. Ten.
Birthdays can be fraught occasions for the parents of children with disabilities or special needs. As parents, we learn very early the importance of monitoring milestones and markers in our children’s lives. Even in utero we know at what age you can hear a baby’s heartbeat and can determine its sex. After the birth, we fill the pages of baby books to take note of every new skill attained or goal reached. The baby books tell us our child should be lifting his own head at 1 month and hold it up when placed in a sitting position at 4 months. She should be smiling by 5 weeks and walking between 9 and 12 months. We celebrate those first baby smiles and baby steps in our baby books and on film, just as later we will celebrate other important firsts: first time riding a bike, first day of kindergarten, first time reading a book, just as later there will be that first date, the first car, the first school dance and, if all goes well, the first degree from college. These celebrations are often marked by rituals and costumes and songs that help give shape and meaning to this fast-moving childhood.
They help us as parents reconcile the strange way that yesterday’s cheerful baby can become tomorrow’s surly teen, the Beyond the Looking Glass wonder of seeing our children shoot inches taller over the course of a summer.
These ceremonies, I believe, help our children too. You’re no longer a baby because you can brush your own teeth and get yourself dressed now. You’re no longer a little girl because you can walk yourself to school without getting lost. You are now a woman or a man because you’ve been Bar or Bat Mitzvahed, had your Quinceañera, your Sweet Sixteen.
But how do you mark these milestones for the children who fall outside the benchmarks of typical development? The children who learn to read at 3 are hailed as prodigies, their parents' pride. But what of the children who still can’t read or ride a bike or even use the toilet at 10? Should they be a parents’ shame? I’d like to think not. But we keep their deficits to ourselves. It’s not something we chat about over coffee.
My son was late on all of his baby metrics. He was late to lift his head, late to smile, late to sit up, and late to walk. Before he was diagnosed with autism, he was diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified (PDDNoS), which is characterized by delays in the development of socialization and communication skills. Delays. We can handle delays, right? The plane is late but will take off. Delay just means “takes longer.” We’ll all be caught up at one point, right?
Doctors diagnose PDD-NoS when a child meets some but not all of the criteria of autism. We’d never heard this term PDD-NoS before—we didn't know what it meant. When our son was diagnosed with autism, a word we did know, I felt we, at last, had something to grab onto—as if we were given a more clearly laid-out map. If by map I mean we knew that we had no idea where we were going. He could be verbal and even smart, if socially awkward. Or it meant he could never speak, never be able to care for his bodily needs. Based on his “global delays” a doctor did warn me that this second scenario was more likely.
When my son was 2 and 3, his older sister would still call him her “baby” because talking for her meant the end of babyhood. But then the words never came. Could he remain a toddler then? Developmentally, he still is in many ways. On a recent weekend we took him to the pool, and there, weightless in our arms in the chlorinated water, we could hold and bounce our 10-year-old boy like the baby and toddler we still feel him to be.
We celebrate our son’s birthday every year because the ritual was and is important to us, just as it’s important to his sister. But I wonder, does he understand that it will be his birthday? Does he know what a birthday means? He can see and respond to the excitement, the cake, the balloons. Lit candles are thrilling. But does he grasp the concept of getting older, of celebrating another year gone past and a new year just beginning? I don’t think so. Neither can he tell us what he wants for his birthday, which complicates the present-giving process.
This year will be my son’s first birthday since moving out of our home. About this I feel a mix of guilt and profound sadness. I want him to know just how much he means to me, just how much I want him to enjoy his birthday. But he can’t tell us what he wants or even gesture toward a picture of something special he longs to have or experience. This concept of wishing for something material and absent, and hoping for its arrival via your parents is really too abstract a concept for him. So, with his sister’s help, we’re working on a list. What would he like? The act of loving is expressed through the guessing, through the anticipation of his happiness. There are no friends to invite to a party. We wouldn’t want the noise anyway. There’s just us and his sitter G who really know and love him and who want to see him eat cake with his hands.
And now he’ll be 10, the double digits, signaling the near onset of puberty and then teenage years and then young adulthood. For our daughter, this transition was important. Ten was a beautiful number to grow into, two digits like her two strong, growing legs standing tall.
But for our son? Every milestone requires a resetting of our expectations. I remember wishing for him to walk by age 1 and when 1 came and went, by age 2. I was grateful that by 3 he could walk. I remember hoping he might gain language by 3 and then years passed and we hoped he could sign for what he wanted. When he was finally able to nod yes and shake his head no at 6 it felt like a victory, a huge jump in our ability to communicate. At 10, I’d hoped he’d at least he would be toilet-trained. He’s not, quite. But he is on his way.
He does love. I know this. When I pick him up from his new home and drive him to his old home, our home, I reach my hands into the back seat and there he fingers my wrist and fingers with such attention and care. It’s as if he is getting to know me all over again. There’s nothing like seeing him experience the joy of the pool in the summertime. Perhaps that’s all that’s needed in our family, in the end.
But as a mother, as his mother, I can’t help but still feel the weight of something lost. I can’t help but feel even a little responsible that he’s not farther along than he is. These milestones we hope our children achieve over a lifetime, to mark the progress and success of that life, aren’t we parents in part responsible for their achievement? Aren’t we supposed to be the stewards of our children’s success?
Lately, I’ve been redefining success for my kids. I hope my daughter can attend a good college, can partner with someone whom she loves and who loves her. For my son, it means hoping that his current interest in helping with laundry and dinner at his residential home might one day translate into a job where he could be and feel useful and also experience joy. I suspect he’ll never live independently. But I know a lot can happen in the next ten years.
I can still see that toddler boy in the public gardens across from where I sit. He’s no longer crying. He’s out of his stroller. He’s being held up by his mother’s arm, walking along the bank of the pond in his blue plaid jumper. She’s steadying him as he examines a thick wet branch too large for him to maneuver alone. Her back is bent over so she can attend to him. I remember how that felt, having your back bent all day long.
In them I see what we once were and what we could have been. The desire to retrace my steps back to this moment of early childhood, this moment before my son’s diagnosis, has not diminished with time. The more my son grows, in age and in height while still retaining the habits of a smaller child, the more I fear he'll never grow up. It's hard to articulate these feelings, even to myself, because I feel I'm not supposed to admit my disappointment. But my longing is still there. I still wish to mother in this other way, following the prescribed milestones, the mapped expectations. For now, I’ll continue sitting on my bench, trying to focus on the now—on enjoying this beautiful summer day and the warmth on my skin.