I attended the inaugural conference of the Profound Autism Alliance in April 2024, Burlington, Massachusetts. The conference had over 500 attendees who included parents and caregivers, self-advocates, professionals, and elected officials. It was an overwhelmingly positive and well-received summit, with presentations by leading autism researchers, autism support organizations, in-the-trenches parents, and medical and behavioral specialists. For each of the talks I attended, I paraphrased points and added my own observations and tweeted these. The bulk of the talks I enjoyed centered on real-lif ..read more

I was thinking today of the things I got done, chores mostly, and feeling some relief that I am a useful human being. Bought groceries, paid some bills, filed medical for reimbursements, did laundry. Whew, I have justified my existence. Well that is just a stupid waste of brain, to have to justify your existence. So instead, I thought about what I’m grateful for in my life. No justification or explanation or rationale necessary: Strong marriage Humor House Garden Healthy sons Extended Family Guitar My guitar pedal (Screamer) Jerry Garcia Robert Hunter Bob Weir John Perry Barlow Bob Dylan Bike ..read more

So happy today. Everything moved forward and curled around us like a ribbon on a present. We rode our bikes 20 miles, eating breakfast in the middle. But it was later on, almost 4 o’clock, when we discovered a new thing in something very old. We thought we’d seen the whole Outer Cape thing—Ptown, bike path, Nauset Light, Wellfleet Harbor—and yet there it was, as never before. It’s a river leading into the bay. A woman told us about it; neither of us remember who she was. “At the end of the parking lot, the very end.” We couldn’t park yesterday but we could today—thank you Labor Day—and as we w ..read more

I’m making a test blog post for Nedde Sweets ..read more

Please enjoy my latest piece in Psychology Today, about what makes for a successful group home for developmentally disabled adults. You may be surprised by what I think. Read it here ..read more

Isolation is a huge and common problem these days. We hear about it in the context of Covid-19 and children staying home, whether because of safety concerns, or quarantine. The autism parent, however, faces these challenges as well as unique issues particular to their child’s situation. Today my thoughts have been heavy and colored with this special form of isolation. Because I am a lonely and isolated autism parent. I always have been. For autism parents like me, our sense of alienation and Other-ness begins at the earliest stages of parenthood, when we realize our children are following a di ..read more

The call came, as always, when I least expected it. Of course it does, because if I had been expecting it I would have called him first. But there I was, blithely going about my business, doing my work, as if I were like anyone else. But, you see, I’m not. I am an autism mom and that means I need to be life-or-death alert like a rabbit, on call like an ER surgeon.  My beautiful bright son Nat is now 32 and so capable, so competent, mature, and dependable. But he is strung so delicately, like a fine old Stradivarius, and his music is just as beautiful, but it doesn’t take much to knock him ..read more

If you’ve been following me for a while, you know that I started bellydancing in June of 2006. Recently I got my 82 year old mother to try it! This is the story, run by my alumni mag the Pennsylvania Gazette. Enjoy ..read more

My August piece in Psychology Today is about accommodations on a personal, down-to-earth level. In other words, Nat taught me how to garden in peace ..read more

Please enjoy my July 2021 Psychology Today piece. I’m hoping to do a series covering a few different ways that we are preparing for the future when we are no longer able to be Nat’s guardians. We are slowly breaking in Nat’s two younger brothers, Max and Ben, to the concepts of SSI, ISP, group home life and day program happenings, which I’ve covered here, in Psychology Today June 2021. I’m also recording other strategies I have found helpful, to come ..read more