Jake is a writer. My son, whose chief foe has been understanding and expressing himself in verbal and written language, loves to write. He writes every day now, for hours. He’s written reams of pages over recent months, filling several new books I’ve bought him. He’s also taken to writing all over the pages of his favorite old coloring books, books he can’t bear to part with though long ago fully colored.
Jake has had a lot to overcome in life, having been born with an encephalocele (a neural tube defect), undergoing brain surgery when he was three days of age, and then three other surgeries by the age of five. He developed language normally as a baby, but after his 18-month check-up he stopped using the words he’d used constantly. He grew increasingly remote. After a call to his pediatrician and an assessment with a developmental pediatric specialist, Jake was unofficially diagnosed under the autistic spectrum at 23 months of age (a child must be three to be officially diagnosed). We began in-home intervention with several therapists just before Jake turned two and just before his baby brother, Ben, was born. It has been a long journey since then.
Even though Jake receptively understood many words, for some reason the words did not make themselves available for Jake to use expressively. A simple word, like yes, was elusive for Jake. He understood the concept just fine, he just did not use the word spontaneously until he was four years old. If he was pointing and finally saying “dink” (“drink”), and I showed him the options at the fridge, he would nod when I came to his choice but not say “yes“. I would repeat his choice: “Do you want chocolate milk?” Nod, “chocate mik“. “Yes,” I’d coax him. “Chocate mik,” he’d nod and say. And so it would go. Eventually he would imitate my saying “yes” after being thoroughly frustrated that I wasn’t responding to him as he wanted. I felt the same as he. Yes. A simple word and a simple concept. He understood it but he didn’t use it appropriately for a very long time.
When Jake was little, I had a dream that there was this large storage room in Jake’s brain. At the door, someone would make a requisition, and a runner would head straight away to the correct filing cabinet, retrieve the appropriate information, and then somehow get lost and confused on his return to fulfill the request. I’ve always believed God gave me this dream to help me understand, as He has from time to time, the mechanisms involved that I would need to work around to reach my son. It gave me a picture, which always helps me, and it gave me hope. I had this dream when Jake was still a preschooler and it has borne out to be true. So many things are stored up in Jake’s storage facility, and from time to time he retrieves some very unexpected and thrilling memories, described in vivid detail with words he could not have used then but can now use beautifully. It is in there; he just doesn’t invite the world in very often.
This is why it is so significant to me that he is writing, writing his thoughts down on paper, capturing what is going on in that mind of his and placing it visibly before himself. And he invites me to read it at times. In the beginning he was more sheepish about it, but as he saw my delight when he would give me a glimpse, he has become more bold about it. “I don’t want Dad to see it,” he often cautions me, although between just you and me, I have slipped Dad a view or two along the way but sworn him to secrecy. Shhh. Don’t tell. I think he’s embarrassed that some of his spelling is a bit off, or perhaps that he might be writing about things that seem trivial. But not to him, they are important to him. Girls, and very descriptive, I might add. Sports. Hobbies. But mostly music, all the instruments and their accompanying straps, carrying-cases, stands, picks, tuners and drum sticks, and other things I’m sure I’m forgetting. He color-coordinates his favorite instruments with straps that would match beautifully. He has a surprisingly keen eye for detail.
He’s a lot like his daddy, Terry, whose expression is very controlled overall and his thoughts flit about behind a wall that even a trained observer can barely penetrate. There are deep emotions and a swirl of thoughts behind both faces but the world at large won’t have access to its play unless the fellows invite you in. At church, you’d think Jake was daydreaming through the music and sermon, although he is often drumming a beat on his legs and humming quietly. But when we get home, he lets me in on snippets of scenes he observed, things that were said that were memorable to him, exactly which instruments were used that day and which musician used them (and sometimes a rundown on all the instruments that musician often employs). He’s shy around certain girls, his cheeks getting that red blush his father also has, and he looks down and shuffles his feet a bit. But Jake has been taking it all in, including who I was talking to, what kind of expression he observed on them, and he’s learned to ask how these things went from my perspective. He’s learned the key to use to see my own thought processes behind the outward events he’s observed.
Jake didn’t spontaneously tell me he loves me until he was nine years old. For many years, he’d just nod when I said it to him. At some point he began to quietly repeat it back to me, “love you”. And then one afternoon we were lying on my bed talking and out of the blue he said, “I love you, Mom.” I cried. Which upset him. I had to try to explain that these were tears of happiness, that he had made me very, very happy. He was worried he’d hurt my feelings somehow. I’ve told him many times since then how much it means to me when he tells me he loves me, when he asks how things went from my perspective, when we can talk about feelings. And he’s learning. Because he is so observant anyway, now that he has discovered how to explore my explanations of what I was feeling, he is better able to understand this crazy world of emotions.
I began writing and story-telling when I was still in grammar school. I was often asked to weave stories on the bus rides home from school and was quite famous in my neck-of-the-woods for “Skunky” stories, stories about some woodland animals and their preposterous adventures. I wrote a lot of Nancy-Drew or Trixie Belden-type stories and then I moved on to romance and family stories when I was in middle school. I still have a box of these old stories. I spent a lot of time confined to my room as a child so reading stories and weaving stories were my comforts. Stories helped me define my life, my challenges and my dreams. They captured my world and allowed me some measure of intentionality. They allowed me to create a world in which I’d want to live.
The one thing I wanted to “do” when I grew up, besides have a happy family, was to write a book, a mystery, most likely. I live the mystery rather than weaving it, but writing still helps me understand it all. Perhaps that is what writing does for Jake, as well. Perhaps it gives him some measure of stability and concreteness, when he can capture his thoughts, his challenges and his dreams in words on paper. Of all the gifts my God could have given my son, I’d never have guessed that it would be this one. Words. Captured, concrete, written words. Expressions of one’s thoughts, one’s dreams, one’s soul. My son, Jake, is a writer.