Welcome, new readers. Your support is greatly appreciated. Please be advised that, due to the way my brain functions, my typical pattern of online presence consists of 1-5 days of intense activity, followed by weeks or even months offline. I am trying to learn to engage on a more regular basis, but my disabilities don't… Continue reading Welcome!
This blog is where I write primarily about disability rights, drawing both from my job as a caregiver and from my own experiences as a person with chronic illness. I have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as… Continue reading Things that need saying
I got some new mints and let 11-year-old Nightingale try one on our way to the beach. He pestered me for another... and another... and another.... the whole way there. Finally, at the beach, I told him, "no more until after lunch." I put them in my purse and set my purse down on a… Continue reading Sneaky Kiddo!
I've decided that, since I'm probably going to embarrass somebody without meaning to eventually, I'm going to put myself through the same treatment. Part of my writing about disability is going to involve sharing my own worst cringe-worthy moments. It's not an easy thing to consider doing. But I feel like it's the right thing to do.
A true story: My 12-year-old nonverbal client and I are having a picnic at the park on a beautiful summer day. We sit on the grass. I try to read to him a bit, but he turns away and begins to vocalize loudly, so I assume he isn't in the mood to listen. I put… Continue reading A picnic, with nonverbal communication
My client and I are walking up the steep, dusty hill from the nature trail to the road. A few years ago, he was terrified of this trail. His older brother would charge up it at full speed while we took the longer, paved path. The first few times he tried this hill, he clung… Continue reading Special Moments
Recently, I went to a restaurant at a shopping mall with a mostly nonverbal, preteen client (let's call him Josh) and his mother. There was a cafeteria-style food counter, and next to that, a place to stack used dishes, a slot (like a mail slot) for used silverware, and bins for trash and recycling. Josh… Continue reading Behavior is Communication, but it’s not always easy to interpret
How do I turn those conflicted feelings into some sort of opinion about what the future of Down Syndrome should be? At what point are we accepting unnecessary suffering and at what point are we throwing the baby out with the bathwater?
The search for a cure or prevention should never overshadow the need for acceptance and accommodation of people already living with those conditions.