Within the past year, my husband and I stopped showing up in the many drawings and cards our five-year-old daughter, Annabel, brought home from school. Instead nearly every creation was made for him: her “baby”; her “cutie boy”; her brother, Finn. A map to Candy Land for Annabel and Finny. A valentine for Finny. A magnet for Finny. Whenever she drew herself in a picture, he was always there, always small, sometimes crying. And whenever her name appeared, just below she wrote his, connecting the dot in the i of his name to the l in her name so that it resembled a lollipop. When we recently moved to a bigger home, Annabel was nervous about Finn’s having his own room for the first time. “What if he gets scared?” she asked. “Who will sing to him?” After all, she explained, “only I speak his language.”
But what is language to Finn? At age 3½, he should be speaking in sentences, enjoying silly Dr. Seuss books, and saying, “Mama!” Or at least answering to his name. Instead Finn communicates with pointed fingers and grunts, clicks and kissy sounds, having lost even the rudimentary babbling he was capable of two years ago, when he was diagnosed with autism.
Growing up as an only child, I was always fascinated with siblings. I loved to look for similarities in families I spied on buses. I relished the teasing that went back and forth between my friends and their brothers and sisters. I was determined to give Annabel someone who would share her memories and listen to her stories late at night. I never considered that anything could go wrong.
Finn was born two weeks late but was otherwise healthy. His Apgar scores were fine. We were out of the hospital within 48 hours. But at eight weeks Finn couldn’t lift his head. He didn’t smile or respond to loving gazes from me or my husband, Jeff, and we nicknamed him Old Stony Face. Then, at the three-month “wellness visit,” a shadow passed over the face of our pediatrician. She sent us to a neurologist, who ordered our first MRI, launching us on an odyssey of doctor visits and procedures that I desperately hoped would answer the questions, Who is this strange boy, and what will he be able to do?
Finally, when Finn was 15 months old, our third neurologist at our third hospital waved his hand, as though he were holding a wand, and said, “Your diagnostic pursuit is over. Your son has autism spectrum disorder.” We enrolled Finn in treatment: 35 hours a week of speech, occupational, and physical therapy. All the while, I looked for improvements and changes in his behavior. But I was the one who changed.
Although I had been a can-do kind of mom with Annabel, I became a lethargic lump whenever I met with any of Finn’s doctors. I knew I was supposed to be actively listening, asking questions, thinking only of my son and what I could do to improve his condition. But I felt a strange sensation in these cheery offices with their Sesame Street wall stickers, in the agencies with hopeful names like Building Blocks and Guidance Clinic. I felt as though my brain were being stuffed with cotton. How did I get here? I’d wonder. How did this life become my life? It all happened so fast. Couldn’t we go back to how it was before?
Jeff and I were distraught over our son’s condition, but in those early months I worried almost more about Annabel. We’d still need to find her playmates. She’d still suffer the loneliness that afflicted me growing up. She’d still have to care for us alone in her adult years, and would now bear the extra burden of a disabled brother.
For a while, I longed for a new baby, to give her the sibling she deserved, the baby who would hit all the milestones and undo whatever went wrong with Finn. But I pushed away these thoughts. A new baby would only add to our already considerable load.
Besides, the concerns that plagued me never seemed to bother Annabel.
“He’ll talk when he’s a teenager,” she said to me confidently one day.
“He may not.”
“When he’s a grown-up, he’ll talk.”
“We don’t know if that will happen.”
“Then how will he have kids?”
“Not everyone has kids. Not everyone gets married.”
“I’ll marry Finny.”
Annabel’s boundless, unconditional love for her brother is unfathomable to me because I find him such a difficult child to like. Often I discover a favorite book ripped to shreds, then have to fish a piece of the cover from his still-chewing mouth. “We don’t eat books,” I repeat emphatically. But Finn never understands. He won’t meet my eyes.
When he screams from hunger, I try vainly to quiet him. “I’m making you food. Can’t you see I am making it? I have to boil the pasta!” I turn my back for a minute and then find him gnawing on the sole of my boot or playing with the toilet water. When I take away the ripped book, remove the boot, close the toilet seat, the crying comes. A cry so shrill and relentless that it feels like someone is hitting me on the head with a two-by-four over and over again.
“I don’t want this kid,” I whisper to myself. “He needs so much. And I can’t provide it.”
Once Annabel heard my quiet venting. “He’s just a baby,” she told me. “Don’t be angry at him.”
I was dumbfounded. How could this five-year-old be more generous than I am? More patient? As the mother, aren’t I supposed to love him most of all? As the sister, isn’t she supposed to be jealous of the attention he gets? Shouldn’t she try to push him over or steal the last Fig Newton off his plate? She never does.
At times, Finn comes to me for comfort. Without looking at my face, he soundlessly falls into my lap. I rock him, and when he offers his tender palms for me to pet, I stroke them lightly with my index finger. His breathing slows, his muscles slacken, he almost purrs. And I am flush with love for this strange child. It’s different between him and Annabel. He has never tried to hug her. When she grabs him, he pushes her or turns away. Lately he has started to bite.
“I don’t get it, Annabel,” I said one day. “Why do you love him so much?”
“I just do,” she replied.
Then it hit me. Annabel can’t remember a time before Finn. She got to know him without any notion of what a “normal” brother would be. She was never burdened with the longing that felled my husband and me. She never hoped, like I did, that getting his eyes straightened or tubes put in his ears might allow Finn to look at us and answer to his name. She never believed that modern medicine would give us the boy we were supposed to have, the Real Boy.
I know Annabel’s love for Finn won’t remain this uncomplicated. As she enters the world and sees how others view him, she may want a different brother. She may feel as embarrassed as I do when Finn’s behavior draws stares on the playground. But for now she is my teacher. I can’t pretend that it doesn’t bother me each time a birthday passes without Finn’s knowing what that means. But following Annabel’s lead, I can try to love Finn for who he is. Not for who he’s supposed to be.
Like my daughter, I can take joy in his joy, the way he smiles when he jumps on the bed or splashes in the tub or hangs his head upside down from the sofa—a smile so brilliant and true that, at moments, it bursts my heart.
Alysia Abbott is the author of Fairyland: A Memoir of My Father ($26, amazon.com), to be published next year. She lives with her husband and two children in Cambridge, Massachusetts.