THE WHY NOT THEN
When my daughter (alias Bink) was younger, sometimes friends or family would say,” Why don’t you write about her?” I was dismissive, back then. So many other people had done that—written articles, poems, a book about their child with autism– and done it well. I just didn’t think I’d have anything new to add. And – more truth to tell – I doubted my ability to do her, and my life with her, justice with my words. And then there was the SLEEP thing. (More about that later.)
Recently, the mental and emotional fog that seems to go with raising a child who has BIG needs, has begun to lift. In the semi-clarity I now sometimes enjoy, it has dawned on me that nobody else has a Bink. I am the one who is most privy to her Binkness, and the world just shouldn’t be deprived of the richness of knowing more of her.
So I have written some poems about life with Bink, and an article or two. There will be blog posts, and, Spirit willing, a book someday. I figure I owe it to the world to make her known, autisms and all.
ABOUT THAT SLEEP THING:
In those early years, ( say, the first twelve or thirteen in Bink’s life) I was weary. That’s putting it politely. Fact is, I was often just barely making it through the days. Generally Bink would go to bed at 8pm, which she called “Owl” and fall asleep within an hour. Often, though, she would wake at midnight, or 1 or 2 am, and be up and wired for the rest of the night and the whole next day. I was flying solo by the time she was six, and it would be years before Superguy landed in our lives. I was exhausted so much of the time. I remember being so fatigued, driving Bink to her educational program and her various therapies and doctor’s appointments, that I’d open the windows wide to get blasts of fresh air in my lungs and slap my cheeks, bite my tongue and lips to keep myself from falling asleep. I was also diagnosed with mono somewhere in all that haze, but I soldiered on because, well, I had to. Asking for help was never my strong suit. There were many daily rituals to go through with Bink, so that she would eat, and void, and be clean enough and have her clothes on correctly. The level of energy required to care for her well and keep up with all the paperwork that went with all the appointments, doctors, therapists, school…it took a big chunk of my mental and emotional capacities to keep all that in line. Many days felt like a marathon. I am not writing this to complain per se, rather to explain that I was in no place to write about any of it, during those years.
THE WHY NOW
That was then. The waking in the wee hours, agitated and buzzing with anxiety, gradually faded away. Medications have helped. Along the way she also learned to tolerate being alone in her room for periods of time, or in the living room in front of a video, when she couldn’t sleep. She still gets up in the night, somewhere between two and six times per, but she usually just visits the bathroom and then goes back to her bed. And so, I am relatively rested. And in the ten or fifteen years that have elapsed, even more other people have written poems, articles and books about their child with autism, and done it really well. Still, I am the only one uniquely qualified to tell you about this parallel universe, life with Bink. I think it’s time.
More to come….