Challenge, sadness, worry, fatigue….I can write just as many pages about how those words relate to mothering a child with disabilities as any other “special needs parent”. I surely can. But here’s the truth: there are so many things I’ve come to like, or outright love, about this journey. I’m not diminishing the fear for the future, the worry about Bink’s vulnerability. They exist, ever-present, woven into the fabric of my life. That fabric, though, is a complex pattern of hundreds of different threads. Oh, those threads! There are shiny ones among them, and silky ones. There are pleasingly nubby ones and fuzzy ones and the ones that defy color categories and seem to call for names like sunset tea and Albanian mountain meadow and Cape Cod ocean in mid-June. Truly, my life is a quilt, made up of many fabrics. I suppose everyone’s life is like that. Mine is not the smooth, uniform whole cloth quilt I may have thought I wanted. It’s more like a big, sprawling, messy, crazy quilt with snags and holes and funny odors in places like old clothes that have been in the attic too long, unwashed. And you know what? The most interesting patches are the ones I call autisms. I’ll share a few here.
What color is this song?
Bink can hear colors in songs. It took me many years to figure this out, because communication as most people know it came along slowly. Fact is, it’s still coming along and always will be. The presence of this glorious synesthesia is something I discovered by piecing together a string of clues, over years. Piecework. It’s what we do here. My apparently more ‘normal” mind cannot make heads or tails of this color-in-songs thing. I can’t figure it out, but I can sure as hell enjoy it. And I do.
First of the month is CD Day
In our home there are many rituals. We all have those, I know, but ours are essential pieces of the pattern that keep Bink relatively calm and help her feel safe. The first of every month is Make the CD Day. Ten iTunes songs of her choosing, ordered in exactly the way she sees fit. My husband, Super Guy, helps her with this; I’m sort of technologically challenged. The CDs are planned months in advance, and they are given the most wonderful names: Potato Burla, Honey Margie, Barbara King Lamb Stew, Brownie Gaily. Rudimentary artwork decorates the labels. Bink remembers the contents of each CD. When she is swinging in the backyard, she’ll often belt out a whole CD, songs in exact order. It took me awhile to figure out that she wasn’t just randomly singing. My “normal” mind didn’t catch the pattern…you see the recurrent theme.
Alarm clock soprano
Each weekday morning, I am expected to awaken Bink at the appointed hour with a novel song. Appointed hour means only one minute leeway, and that’s the early side of on-the-dot. So, if the wake-up time is 7am, I can enter her room singing at either 6:59 or 7am. If I am one minute late, she bangs on the wall. Yes, you heard that right. She is often awake, you see, waiting for me to come in and, well, officially wake her. Oh, and I must have girl hair when I wake her. This means hair down, visible on the left and right sides of the head, for the uninitiated among you. Girl hair accompanies the nighttime ritual as well, but that’s an autism for another time.
Now you may be asking yourself why we have not moved on to an actual alarm clock. Well, for starters, alarm clocks can be very loud and shrill. They also require a certain level of dexterity to manage the off function, the ability to get the message from brain to hand relatively quickly. A jarring start to the day can mean a difficult day all around. I am aware that there could be music programmed to awaken Bink. I am. She’s not interested in that, though, says she is not ready. Some years ago I began to really appreciate the fact that this dear girl loves to be awakened by my voice singing a soft, sweet song. There’s something rather magical here that makes this an autism I cherish. Weekend days are exempt, and vacation days too. On those days she sleeps as late as she wants. This can mean lying in bed looking at the clock waiting for it to land on, say, 8am. These days we are creeping a bit later, towards the daring hour of 8:30.
My crazy quilted life with Super Guy and Bink isn’t always pretty. There are lots of loose threads and some big snags and the afore-mentioned holes. It is sometimes unpresentable, and it can smell strange. It’s also wonderfully warm, and soft, and endlessly interesting. I wouldn’t trade places with anyone.