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Books in the Home: Reading with Sophie: Finding Books for a Teen with Special Needs

How do you choose a book for a child who doesn’t have the capacity to choose one for herself? As the mother of a nonverbal teenager with autism and developmental delays, it is a question I ask myself all the time. When Sophie was first diagnosed in preschool, we were told that she was intellectually similar to a typically developing three- or four-year-old. She still had verbal language until she was around six, when her speech became less and less understandable. Now seventeen, Sophie cannot read or write, and while I will always hold out hope, she will probably never be able to. Sophie can communicate basic needs, such as what food she wants to eat and what TV shows she wants to watch, by using a communications application on her iPad, which allows her to point to pictures and symbols that speak for her. (Though it seems remarkable to me, she can even use it to do such things as find a video of Cookie Monster singing “C Is for Cookie” in Portuguese.) But she cannot express her desire to hear a scary ghost story, a romantic saga, or a fairy tale, or even her preference to not hear those stories. 

When Sophie was younger, it was easy to choose books for her. We had, and still have, shelves filled with picture books. All I needed to do was hold up these familiar books for her to pick one. Or she would pull one off the shelf on her own. Rosemary Wells and Iona Opie’s My Very First Mother Goose and Here Comes Mother Goose books are still on our shelf, battered and taped up so much that they’re hardly usable. We have well-worn copies of Goodnight Moon and Molly Bang’s Ten, Nine, Eight tucked away in Sophie’s baby box after two years of reading them to her every night before bed. I loved picking out stacks of picture books from the public library, which is right behind our house. She would sometimes close the covers of these unfamiliar stories and request an old favorite, but usually she listened to the new books happily. 

Like many children with autism, Sophie has had her periods of obsession with various objects, and that includes books. For a few months when she was a toddler, we couldn’t leave the house without Sandra Boynton’s A to Z, which she would clutch in her hands as tightly as her doll. As a toddler, and then a preschooler, Sophie would pore over picture books for long periods of time, staring at the pictures and flipping the pages of multiple books. She looked so serious, so deep in thought, as she did so. Even with her diagnosis, I assumed at the time that she would become a reader since she seemed to love books so much—and in the overwhelming early days after a diagnosis of autism, future skills are hard to predict. I knew she would never get her driver’s license, but it never occurred to me then that she wouldn’t be able to read. As she got older, I reveled in picking a variety of early chapter books (such as the Mr. Putter & Tabby series) and classics (such as The Mouse and the Motorcycle). But as it became clear that she still couldn’t read, and was incapable of letting me know what her preferences were, it also became harder to choose the right stories. 

Now that she is seventeen, it is far more of a challenge. I am an aspiring children’s book author. I have a master’s degree in children’s literature. People love the books I give as gifts to their children. Yet I often stand in the library in a daze, unsure of what to pick for my own child. Most seventeen-year-old girls know exactly what they like, and aren’t afraid to tell you. I remember the books I chose at that age, swapping favorites with my friends. Though my mother would give me the occasional book to read, I cannot imagine having all my books chosen by someone else. I wish Sophie could tell me that she doesn’t like stories about cats, or that she is dying to listen to a biography of a pop star. I would gladly choose anything she wanted. 

Still, I persist, continuing to read to her as I have since she was a few months old. It is part of the routine she craves (as do so many other children). Every day after school I will read her a chapter or two of a book, hoping it will appeal to her. Right now that means middle-grade fiction, usually realistic stories like The Penderwicks or The Misadventures of the Family Fletcher, in which I know, or can at least guess, that she will relate to the plots about school, sports, and family. My husband Mike always reads a bedtime story to her as well. At the moment, they are enjoying the Nathaniel Fludd, Beastologist series by R. L. LaFevers, and Mike, an entrepreneur like the book’s protagonist, still talks about how much he liked reading Gary Paulsen’s Lawn Boy with her a couple of years ago. 

But what about YA and more typically age-appropriate stories? Not to mention the more challenging subjects that appear even in middle-grade fiction, such as child abuse, bullying, and war? I stopped reading a book to Sophie halfway through when I realized the main character was about to come across her mother’s suicide. I am a fierce opponent of censorship, but it doesn’t seem fair to read about a difficult topic she may not understand or have the ability to ask questions about. Did I do the right thing? I think so, but it’s easy to doubt yourself when you are the parent of a special-needs child, making decisions for your child that other children make for themselves. 

I don’t know what she understands about the stories I read to her, but I always presume competence. She doesn’t always look like she is listening, and I’m sure she doesn’t get every nuance (again, like many children), but she does seem to like our storytimes. I’ll ask if she wants to hear another chapter, and she will nod her head. Sometimes. Other times she will hand me a bookmark to signal all done. But that happens rarely. 

Once when she was a toddler, she was watching a Maisy Mouse video (something she still does) in which Maisy was riding in a hot-air balloon. Sophie ran over to me holding a copy of Harold and the Purple Crayon and pointed to the page where Harold is also riding in a hot-air balloon. She was making connections! I often wonder if she is still making these connections with the stories I read to her. Despite her developmental delays, she has good receptive language for someone with severe autism, and I credit the thousands of stories she has heard over the past seventeen years. And whatever other effect the stories are having, we are spending time together doing an enjoyable activity. 

I wish I had better guidelines. You can find booklists for all kinds of readers. There are lists intended for reluctant readers, for emerging readers, for Harry Potter fans—you name it. But I have rarely seen a list for someone in my exact situation. 

I appreciated Ashley Waring’s September/October 2010 Horn Book article “Reading on the Spectrum” about choosing books for her son, who has autism. And I have read about book clubs for teens and adults with special needs in which you don’t have to be a reader to participate. But I think I will always struggle to pick the right story, whatever that is. Compared to the choices we will have to make when Sophie turns twenty-two and has aged out of the school system—and everything about her life will be up to her father and me, from where she lives to how she spends her days—storytime decisions may not be life-or-death. But they are still important. 

At the end of the day, all I want is for Sophie to enjoy the written word as much as I do, whatever the genre. It would be wonderful if she learned how to read. And I wish she could tell me exactly what she likes. But I really just want her to remember all of the hours spent together sharing stories. And I hope she makes more hot-air balloon connections, in her own way.

From the September/October 2019 issue of The Horn Book Magazine.

Catherine Shepard

Catherine Shepard is a writer with a master’s degree in children’s literature from Simmons University. She lives in Watertown, Massachusetts.

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Elayne Kelley

What a wonderful piece! Thank you! My favorite line in this essay is, "I don’t know what she understands about the stories I read to her, but I always presume competence." It's the outlook of a wonderful parent...we always hold out hope...we always presume they will or can do it!

Posted : Sep 30, 2020 07:41



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