AUTISM AWARENESS DAY Redux

I’m re-posting this poem in recognition of “World Autism Awareness Day.”   As D, a sister mom from my autism tribe, has said, ” We are aware. We are very aware.”   Autism Awareness month is April, World Autism Awareness Day, April 2 and, in case the day lacks color, (as if any day with Autism […]

Folliculi, Follicula

TEND and SAVOR “Why the hair is attached to the head it will not come out please respond to me in a video.” These were the first words Bink communicated to me today, shortly after she got up.  I’ve answered this question—one of about six in the current sequence that makes up part of my […]

Integration

It has been almost a month since my mother passed. It wasn’t unexpected. She was old and ill and tired. She wanted to go, was impatient with the way those final months seemed to drag and throw more miseries her way. I was able to mark 60 of my birthdays with her still in the […]

Headway Happening Here

Smile Last time it was Tuesday, six months and four days ago. The incredible Dr. S managed a first— pedaling the chair back just a bit, your face more accessible, sunglasses shielding your eyes from too-bright light. He touched twenty dulled pearls with his counter, probing slyly, quickly, distracting with wide smiles, silly faces, a […]

WALKING HER HOME

Adrift. That’s the word that floated into my teary vision as I sat in my car outside the facility my mother has resided in for the past seven years. These after-visit pauses have become part of my ritual in the past few months. There is always someplace else I need to be, fitting in my […]

What Do You Know?

What do we know for sure? I find myself wondering, lately, if we mostly hold the beliefs that suit our ease. For some, self-contempt can provide a kind of familiarity which becomes belief. For others, there is ease in what’s left after all the anger—which is really a mutation of pain—gets bored and leaves, or […]

Accepting Autism

Ten years ago, April was designated Autism Awareness month. April 2 is World Autism Awareness day. There has been a movement towards renaming both of these, replacing awareness with acceptance . Robert Frost wrote,” Always fall in love with what you’re asked to accept. Take what is given, and make it over your way. My […]

Literally

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 […]

Notes from a Parallel Universe

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 […]

Little Big Thing

“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 […]