Lifeline

Last month I went to our Asperger’s Support Group meeting to listen to a talk on…puberty. I think—I hope—we are two or three years away from THAT, but following the line of thought that has so far served us well—that it’s never too early to prepare for something you know is coming down the pike—I decided it would be good to go. Somewhere, in-between the PowerPoint slide on personal hygiene and the diagram about raging hormones I thought to myself: If going through puberty was bad, then dealing with kids who are going through it is going to be a virtual nightmare. And dealing with Asperger’s AND puberty is going to be…well, a little unimaginable at this point. But one of the many valuable tips and tricks I took from the meeting—before I shut down at the thought of what lay ahead, and began planning my next day’s work activities--was the idea of a privacy notebook. The idea is simple: Step 1: buy a notebook Step 2: tell your child that the notebook is there for him to write down questions and concerns Step 3. Tell your child that once they have written down their question or concern, they are to place the notebook on or under a parent’s pillow Step 4: The parent retrieves the notebook, reads the question, writes down an answer, or comment, and then places the notebook on or under the child’s pillow There is only one rule, but it's an important one: the parent can’t engage the child in conversation about the contents of the privacy notebook, unless they have asked, in writing beforehand, to have a conversation. This rule is critical—especially for us, since sorting through all the dimensions of a conversation is stressful to L., especially when he’s unprepared. I love this privacy notebook idea, for so many reasons. I can see how it would work well for most kids trying to negotiate all the changes and upheavals surrounding puberty, and their budding interest (or revulsion) in sexuality and hygiene, and all those thorny unmentionables of young adulthood. It’s much easier for a child to write a question down in a book, and hide it under his parent’s pillow, then it is for him to look them in the eye and ask a loaded and embarrassing question; it’s easier for the parent, I imagine, to have the time to process the question in the first place, before being forced to muddle through the answer. But for a child like L., who finds typical conversations so stressful and who often has no idea how to initiate a conversation in the first place, or to put voice to his fears and worries, a privacy notebook could make all the difference. And why wait until puberty, I thought, as I drove home from the talk. Why not start using one now? It took an entire year before L. could articulate his fears about a book he read in third grade—a book that sent his anxiety into a frightening tailspin. But what if we had set up a privacy notebook for him? Would he have used it? Could he have written down what was bothering him, what caused him to wake up each night, in a full-blown panic attack? Some weeks ago, in the middle of horrible week—a rough patch—as I wrote about, I found a three word note from him tapped into my iPod. Since then, he’s tapped out other notes. Short ones, longer ones, and from time to time I’ll put one in the notepad for him too: things like I’m sorry you had a bad day or I love you or I’m really proud of you. What had appeared one afternoon as a simple three-word message connecting me to my son, in the middle of a dark and frightening time, became an improbable lifeline, a strong rope between the two of us. I grabbed hold and pulled, I bound it to me, for those awful moment when L. becomes unreachable, when I pull and pull on the line and it comes back empty. Yesterday, I went home and dug out an unused notebook. I made a label for the cover and told L. about my idea. “Hmmm…” he said. “Do you like it?” “It could be interesting,” he said, and then he skipped off into the office and shut the door behind him. Later that night, I took the notebook out and wrote a few lines on the first page. I moved aside the stack of books, and carefully slid the notebook under his pillow. “I left something for you under your pillow,” I mentioned casually to him. He didn’t answer right away, but later, on my way past his room to get a book I saw him shoot something back under his pillow, quick as lightning, when he saw me. I caught his eye. He caught mine. I smiled. I grabbed the rope. I wrapped it tightly around my hands, and I held on.
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