I suppose all parents have those first moments of recognition; the sudden realization that the world has pushed itself inside your child’s innocence, the bittersweet rush of comprehension that s/he will never be quite the same again. Having a child with disabilities creates a different trajectory. Timelines are unpredictable. Those milestones that mark the development […]
One of my goals as a creative person is to put more of my work out into the world. If writing and art-making gets short shrift in the bigger picture of my life as Bink’s mom and chief advocate—and it does—the amount of time I spend on submissions is barely worth a mention. All writers […]
I’ve written a fair amount about life with my adult child. As I plod ever so slowly towards creating a book about the journey, it occurs to me that the pace at which I’m working on that is in sync with the overall pace and rhythm of our life together. Bink will turn 28 this […]
It’s been just over a month since my dear friend and soul sister Marina died, after a quick and nasty tussle with appendiceal cancer. She visits my consciousness daily, in ways both fleeting and substantial. We talked a lot about the afterlife in her last months. She told me clearly that, when she visits me […]
“Stay in awe of life. The little things are the big things. “ ― Richie Norton “I’m cold.” Bink had just gotten up, a good hour later than she used to get up on any given pre-Covid Monday. My eyes scanned her body, noting the hybrid pajamas I’d hastily grabbed for her to put on […]
It’s been a time of times, a steady landslide of uncertainties. Yes, the Covid, the shutdown. Yes, Bink and so many other adults with disabilities being home all day every day for many weeks, with all the usual programs and activities canceled. Yes, the mass suffering and loss that has accompanied this pandemic around the […]
What a time! We are seeing and hearing wide ranging effects of the Covid-19 pandemic on, it seems, every populated part of our planet. In our corner of the world, Bink’s autism and accompanying dependence on schedules has collided headfirst with current realities. Every activity in her life, from her weekday program to her favored […]
Bink loves girl hair. For the uninitiated, this translates to long straight hair hanging down, on a female of any age. Preferably, the hair should be visible equally on the right and left sides of her head. I’ve had long brown hair for 25 of my daughter’s 27 years. At one point, it grazed the […]
Bink loves food. In fact, her relationship with it goes far beyond what tastes good and satisfies her hunger. She loves looking at cookbooks, finding recipes on the computer, and watching cooking shows. The painting subject she selects for her weekly art class is often something edible. The paintings on our walls at home, and […]
I’ve been finding it challenging to encapsulate life with my daughter, Bink, lately. Hard to shape words for the page and even for casual conversation with friends, many of whom have their own experiences with parenting and/or caring for people they love who have special needs. It’s not for lack of material. Bink continues to […]
