A Father’s Tribute to His Son With Down Syndrome

It may be best to approach MALLKO AND DAD (Enchanted Lion, 120 pp., $19.95; ages 6 and up) as a picture book that’s not really for children, or at least not for children to read on their own. It’s a book that seems aimed at helping parents of children with special needs — and perhaps those children themselves, as well as their typically developing siblings — come to terms with their shared lives. Through a playful blending of words and drawings (conveyed in a smooth English translation by Mara Faye Lethem), the illustrator Gusti, who was born in Argentina and now lives in Barcelona, offers an autobiographical account — part sketchbook, part collage and part fragmentary story — of how he, his wife and their older son dealt with the fact that his younger son, Mallko, was born with Down syndrome.

The sentence “I did not accept him” sprawls in giant, heavy, capital letters across a spread early in the book. Toward the end, typed small below an indecipherable but nonetheless endearing drawing presumably by Mallko, Gusti writes, “Kids with Down syndrome are an endangered species.” These two sentences span the journey the book takes from Gusti’s early fear and confusion over Mallko’s condition to his blossoming awareness of how rare, precious and wonderful his son is.

Sometimes Gusti’s pictures feel almost manic, splashed all over the pages, which are treated like open canvases. There are photorealistic drawings in colored pencil, anxious pictures in pen, and countless cartoons and comic panels. Taken together, this assortment of styles represents a mind shuttling between feelings of love, fear, uncertainty, hope and gratitude — a dizzying cocktail that may feel familiar to many parents.

Down syndrome, for Gusti, becomes an opportunity to examine and more deeply inhabit his love for his son, whose world, as Gusti illustrates it, is filled with wonder. For instance, amid a sketchbook-like series of drawings of Gusti and Mallko riding tricycles, Gusti writes, “Every day I tell myself: Don’t forget to play.” In one of those drawings, Mallko looks directly at the reader with a piercingly curious gaze, as if asking: “What’s your problem? C’mon, let’s do something fun.” Dozens of images of Mallko drawn in every imaginable mood beckon the reader into his illuminated world.

According to the last page, “Mallko is now 11 years old and he is very happy.” That makes him the same age as my son, who has severe cerebral palsy and whose life has been nothing at all like the life I had imagined or hoped he would have. My son is very happy, too, and I am very grateful for him. Like Gusti’s, my early years of parenting were filled with hope and dread. Yet, having gone on a journey like his, I find myself resisting what feels at times like Gusti’s binary vision of special needs parenting. He seems to propose two poles: acceptance of a child, and the opposite of acceptance. I recall a million gray areas, and nothing as stark at the beginning as Gusti’s “I could not accept him.” In Gusti’s drawings, I recognize countless shadings of what love feels like.

When I read the book with my 7-year-old daughter, she said she thought it might even help special needs kids better accept themselves, though my son and, it seems, Mallko are blessed with unusually effortless love for their lives. They might not need that help. And most of the parents I know with special needs kids have developed their own fierce and subtle ways of understanding their own and their children’s lives — they may find Gusti’s terms difficult to accept.

Then again, my resistance may be evidence of the power of the book. Perhaps I cling too defensively to the terms of my own journey, which, now, are precious to me; they’re the ways I love my son. Eleven years ago, however, when I felt alone, worried and afraid to be hopeful, I would have been extremely grateful for this book.

Craig Morgan Teicher is a poet and critic. His latest book is “We Begin in Gladness: How Poets Progress.”

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