The Companionship of Books

“Thou hast only to follow the wall far enough and there will be a door in it.”—The Door in the Wall, Marguerite de  Angeli, 1949

In one of the very favorite photographs I have of Cliff, he is a four-year-old Reading Buddha. Sitting cross-legged on a miniature red plastic rocking chair in his bedroom overlooking our backyard, his focus on the page is almost trance like. On the floor surrounding him is the deep, wide sea of books he had already looked at, having carelessly allowed each one to fall to the floor once he reached the last page. He’s dressed in a Pull-Up and a red sweatshirt, his soft, silky light brown hair falling softly across his brow, head bent close to the page as his little tongue rests between his lips.  I love that picture for the memories it evokes, and for the serenity reflected in his posture as he "read" Love You Forever.

Cliff had always had a preference for books over toys which, I suspect,  had something to do with his difficulty figuring out the way some of his toys worked, including those for which he needed a more expansive imagination. He sometimes required my company to model the ways in which he could play with the Little Tykes play house and the kitchen set, or with building-type toys meant for kids with better fine and gross motor skills.

"Mumma", he would say in his velvety-rasp of a voice, forming the sign with his right hand, followed by the sign for "help". He had a good attitude towards at least giving each toy a go, because he enjoyed watching me act out the directions, which was as much fun if not more so, as the toy itself.

Looking at my little Buddha picture, I can recall that at the end of each day, I would go into his room and place the books back on the shelves, sometimes to the point of exhaustion. That’s how large a collection we had. I counted them out of curiosity the day I took them off the shelves and packed them into moving boxes.  The 350-plus books we had accumulated by this time traveled the highways on a U-Haul truck, through three states to our new home in Massachusetts because I could not bear to get rid of a single one. Cliff possessed an absurd number of books, which to some might smack of indulgence. But Cliff was our only child for his first six years and we loved to lavish him with all the books his little heart desired. Books made him happy and all I wanted was for him to be happy, deliriously so.

At the time the photo was taken, I had every reason to believe Cliff would someday learn to read. I knew other people with Down syndrome who had that ability and, though I knew it would take time, I was not cynical about the possibility. He had certain pre-reading readiness skills, such as naming the letters when I pointed to them, matching letters with the sounds they made and, of course, motivation. Then, cruelly and incomprehensibly, at around eleven and a half, the age at which he showed the beginning signs of puberty, he began a regression in reading and speaking that essentially was irreversible. It was very gradual, but heartbreaking in its cumulative conclusion.  

I have been told by various doctors and speech pathologists this can happen to a small number children with DS for no reason anyone has been able to definitively identify or understand. The teachers and my husband Ken and I nonetheless continued in our efforts to teach Cliff to recognize at least some sight words. I wasn't ready to give up. Eventually, however, we made the decision to stop teaching him to read words in the standard way, instead immersing him in what are called “picture symbols”; this method is a tangential form of reading that has value beyond just the reading of stories. It is also a type of augmentative communication tool for those who are non-verbal, with which the individual can point to a picture symbol of the type of food he’d like for instance, or of the activity he’d like to spend his time doing on a Saturday, to say he feels sick or hungry, or to communicate a mood--sad,happy, mad, etc.

The teachers wrote picture symbol stories for Cliff to read. Sometimes they were about his day at school (“Today I went to gym and played basketball with my friends”). When he came home, he would read to us about his daily activities. I also got in on the action by purchasing software to use at home; Mayer-Johnson picture symbols was a godsend as it allowed me to write simple stories for him about his family, holidays, and social stories about manners and emotions. There were picture symbols for everything, including pronouns, prepositions and articles. Reading had become accessible to him through a technique that made him feel successful. He never actually became fluent as a picture symbol reader, but it was enough to engender in him a genuine feeling of accomplishment and pride as we sat and read together.

When we moved into our new home in 1997, about half the books were hoisted up the attic ladder in boxes and bags to be dealt with “someday”. But many were kept in his room because his love affair with all kinds of books would continue for a long time to come. We never abandoned the books he had come to associate with cuddling on the couch next to me, especially after “Googie” and “New Baby”, his pet names for his brother and sister respectively, were born. Naturally, I continued to buy books over the years, books that were clearly meant for young children rather than a young adult. But other than the picture symbol books we created, these were the stories he still enjoyed and was able to comprehend. I did explore reading chapter books about his favorite TV show—Full House, reading two or three pages of a chapter before I realized he wasn’t really following the storyline.

Almost sixteen years later, my general frustration with the clutter upstairs had reached its pinnacle, forcing me to make time for my “Operation Attic” project.  One day while standing on a pile of my daughter’s pink flowery baby dresses that had spilled out of a box onto the floor, a switch turned on in my head. It’s the same switch that goes on when the refrigerator has too many of last week’s leftovers. I surveyed all the accumulated “stuff” of the kind George Carlin used to build comedy shows around, and I felt like a lost child in a department store, bewildered about how to find my way. In the spirit of the words of Lao-Tzu, "A journey of a thousand miles begins with a single step," I picked up the first box. No fewer than seven bins and bags of Halloween paraphernalia were the first to go. I avoided the books at first, because some of them, the ones whose titles were visible from my vantage point, were calling to me, messing with my determination to stop holding onto stuff that no longer held the same magic, but whose presence brought back to mind a little boy on the cusp of becoming a reader.

They were everywhere, spread amongst the stuffed animals and elementary school art work that likewise have a vise-like grip on my heart.  I looked into each box or bag, and whispered aloud, “Oh!” and “I loved this one!” when I picked up a particularly special book. Each corner, every area I thought held old clothes or ornaments or crib toys or junk, revealed a monumental hoard of books born of a love of reading, yes, but also of simple moments unburdened by ambitious motives.  Each subsequent discovery of yet another assemblage of Dr. Seuss and Little Critter stories weighted with memory made my heart sink; I had anticipated this excess of books, but not the bittersweet recall of an unrealized dream. Cliff would never learn to read, no matter what I had or had not done, or the choice I had made to give up and concentrate on other routes to “reading”.

 As I slid each heavy load down the unfolded attic stairs to my son Max, who ironically, reads perfectly well, but has neither the time nor the inclination to pick up a book, he would exclaim as to the discovery of yet another cache of books spilling into the hallway.

“Whoa! Mom! How many more ARE there?”

It took almost two weeks to examine each book and decide which of the piles would become that book’s destiny--keep, give-away, or toss. I  asked Cliff about some of them, but he clearly indicated, via the use of the same expression he uses when his iPod is out of power, that this would be my task, mine alone.

In the end, I was proud of myself for keeping only three boxes full. I didn’t fret too much over the books that were too damaged from age, or the ones that weren’t well-written. Many I kept simply because they are no longer in circulation and I could never replace them. Otherwise the keep pile was strictly for the books I remembered best, or those with an inscription inside the cover: "To our Cliff-Boy, Love from Mommy and Daddy", or the books Cliff might still enjoy. Some were books for which Max or my daughter, Olivia, claimed some nostalgia. I imagined reading to the grandchildren I hope to have someday. I’ll tell them, “This one used to be your Uncle Cliffy’s favorite book.”

On the last night I placed the final rescued book in its designated area, I brought Ernie's Big Mess into Cliff's room and asked him if I could read it to him before bed.   As I read, I spoke with a British accent just for the hell of it. It had a bit of the aristocracy of Downton Abbey, mixed with the silliness of a Monty Python skit. As I had hoped, my dramatic reading of Bert’s frustration at his roommate’s slovenly ways made him laugh. I said, “Cliff, you are too old for this book, but I still love it. It’s actually pretty funny, right?” His eyes were closing, but he managed to answer in the affirmative before falling asleep.

“Thanks for reading with me, Cliff Boy. Love you. See you in the morning,” I whispered.

In the grand scheme of things, that my kid never learned to read is a small speck of nothing. There are worse things, after all. None of us is good at everything; I don’t know how to swim, though I could probably save myself with a decent backstroke.  Despite my Italian heritage, and an entire family of cooks, I didn't get the cooking gene; at family gatherings, I bring the wine.

 A person can learn a lot from a kids' book:  When Ernie ran away from home after Bert became angry at having to clean up after him, Bert understood Ernie was incapable of living up to Bert’s impossibly high standards. He realized he’d rather have a messy friend than no friend, and he accepted what he could not change. It was a satisfying read about acceptance, one that speaks to the uniqueness of each one of us.

It’s like I used to tell Cliff’s somber-faced grade school teachers and special educators at his Individual Education Plan meetings. I’d finally gotten tired of hearing, “Cliff can’t do this, Cliff can’t do that, He can’t blah, blah, blah”. I looked them in the eye and reminded them I already knew what he couldn't do. I lived with him, for goodness' sake. 

“How about you tell me what Cliff CAN do and work with that?” We all have alternative avenues for getting through a day, finding a way around the obstacles that don’t have to be impediments to some kind of progress.

I’ve been toying with the idea of writing a few stories for adult, non-reading book lovers like Cliff, not about childish concerns, but about topics like work, love, dances, friendship—because he still loves books.  And my grown-up son still deserves to be happy, deliriously so.