When Bink was young, I didn’t know if she’d ever be able to ask questions. She had words at age three and four, five and six, but not in a conversational way. She didn’t point at things. Figuring out what she needed or wanted involved some combination of detective work, intuition, and guessing, the way it is with new babies. Could she be hungry? Well, it had been a while since her last snack. Did she need to be changed, or was she about to need that? ( She was very late to the toilet club compared to…well, mostly everyone). Did she want that toy she seemed to be eyeing, or could it be that her eyes were fixed instead on the fluttering leaves visible from the near window?
I got better at reading her actions and reactions. Her vocabulary began to grow. Still, no questions, no gesturing. I’d carry her to the various rooms in our home, finding assorted objects and pointing them out and saying their names over and over. When she got too heavy to carry, I’d toddle around with her and do the same thing. After awhile, I began to add the beginnings of a question. I’d point at something, try to get her eyes to follow my finger, and then say,” Wh, Wh, What. What is it? It’s a ….light! Wh, wh, what. What is the sound? It’s a …..doorbell! In front of the mirror it was Wh, Wh, Who. Who is it? It’s….Bink!”
Like many aspects of autism, the gaps in typical development were frustrating, and also fascinating. Bink’s inability to inquire about the world around her created an odd, passive dependency. I could never be sure what or how much she was taking in from anyone’s efforts to talk to her, or from overheard conversations, TV shows, or picture books. Weeks, months, even years later, I’d hear her repeat phrases or snippets of old conversation that told me she was absorbing more than most people thought she was. She didn’t observe others, but she did seem to be able to associate what people said with what they might do, sometimes. She and I developed an ability to communicate using pictures, gestures, and songs. I was her interpreter, filling in the gaps when kids and adults tried to communicate with her in the ways they knew. “ I think she wants….”, I’d say to them. “ Bink, Susie wants to sit close to you and play.”, I’d explain to her, while demonstrating this with my own body and a nearby toy.
I don’t remember exactly when she began to form the W’s. I know it took a long time. Years. The questions, when they came, were repetitive. Often, they still are. In fact, is not unusual for Bink to ask the same question during phases that last months, over many years, and multiple times a day. But I’m getting ahead of myself, as I often do.
Bink’s delivery gradually expanded from vocalizations directed at nobody in particular, to words sometimes uttered in the general direction of a person. Years later, there were more words, scrawled on a napkin that she’d leave on the table where, perhaps, someone might find it and be able to decipher it. Later still, there were typed lists. Many of her questions, now, involve why someone said a certain thing to her (or did something in her presence). It can be a challenge to explain why a certain teacher said a particular sentence on that second June Tuesday in 2003, or why her now deceased grandfather played a certain game with her when she was two years old that she didn’t like. The notion that he may not have realized she didn’t like the game is foreign to her. Doesn’t everyone just know what is happening in her head? Do others have different thoughts, feelings and preferences than she does? These concepts can be pretty advanced to those on the autism spectrum.
These days, Bink is a veritable fountain of questions, mostly about her past, and most of them are directed at me. “ I don’t know”, or “ I wasn’t there” is not a satisfying answer for her. I know she uses the answers as a learning tool, and so “ I wasn’t there, but I can guess” is my default intro to an answer that I hope will help her understand.
In a recent post, I shared some of the rituals and routines that punctuate life with Bink. Her Friday questions list is one of them. She types up a list of ten questions, titles it according to what is in her head, and I answer them as I think the named person or thing would answer them. It sounds convoluted when I try to explain, but this is part of the rhythm of our lives at home now.
If something is troubling her about why a certain instrument sound happened on a particular song on a specific CD, there may well be a list of ten questions for me to answer the way I think the song on the CD would answer them. Her Occupational Therapist, the one she loved and knew in 1997, used Jello animals during sessions. Bink has probably asked me about this two hundred times. Why did that OT use those animals and no other OT did? No iteration of my answers has satisfied her curiosity. There have been many lists of questions for Tina, the beloved OT who died long ago, typed out for me to answer them the way I think she would answer them. Maybe someday Bink will be able to accept an explanation that you or I would find eminently reasonable, and then she’ll close this particular file in her head. Until then, the questions will continue, asked and answered slightly differently.
I admit that the questions list is often a challenge for me, and something to fit in between all the other things that demand my attention. Yet, I remember myself as Bink’s young mother, twenty years ago. I imagine she and I, meeting today for tea. “ What do you mean, too many questions?,” she might sputter, eyes wide for emphasis. ” Do you know what I would give to have my little Bink ask a single one of them?”
I’d have to be humbled, and tell her she’s right. I used to just hope and pray for that which sometimes overwhelms me now. I know Bink’s questions are a banner of progress, and a reminder that she is always learning and growing.
Indeed, if my young mother-self were sitting with me now, I’d reach across the table and take her smooth hands in my older, weathered ones. “ Keep the faith,” I’d whisper. “ She’s going to surprise you and delight you and make you very, very proud.”