Choices

Christy Shake
Calvin's Story Blog
Originally published February 13, 2019

Here is an excerpt:

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

The blog post is here.

Study questions why thousands with developmental disabilities are prescribed antipsychotics

Peter Goffin
The Toronto Star
Originally published August 23, 2017

Researchers with the Centre for Addiction and Mental Health and the Institute for Clinical Evaluative Sciences have called for “guidelines and training around antipsychotic prescribing and monitoring” for doctors, pharmacists and care home staff after finding that nearly 40 per cent of people with developmental disabilities were prescribed antipsychotic drugs at some point over a six-year period.

One-third of the patients prescribed antipsychotics had no documented diagnosis of mental illness, according to the study, which tracked more than 51,000 people with developmental disabilities who are eligible for provincial drug benefits.

“We don’t know, with the data, why this one person was prescribed or this (other) person was prescribed so we’re trying to almost guess at why,” said psychologist Yona Lunsky, lead author of the study.

“It could be behaviour, aggression, self-injury, agitation.”

For people with developmental disabilities who live in group homes, the rate of antipsychotic prescriptions was even higher.

About 56 percent of developmentally disabled group home residents were prescribed antipsychotics. Of those, around 43 percent had no documented mental health issues.

The article is here.