The Ever-Changing World of Caregivers

Kitty Parlby

Usually, I write about positive things in our lives, or share knowledge on practical strategies for autism families, teachers, aides and community workers. This time, however, I want to share something very real and personal with you – a glimpse into our lives, if you will.

As Eric is nearing 22 years old, we continue to learn and navigate the world of care and services for adults with developmental challenges. Through our service provider, we have a community aide worker for Eric Mondays through Thursdays. However, here’s one of the main difficulties we face: typically the aides stay for only 4 to 8 months. Because of this, two years ago I had to quit my job as a special needs Educational Assistant at an elementary school; in one year I had to take two long leaves of absence when Eric’s aides quit. It can take weeks or even months to find a new community aide. I realized that this was going to be an ongoing issue throughout Eric’s adult life, and resigned from my position. I went on to start Autism Inspirations, my own speaking and consulting business, in which I can control when and where I work to coincide with Eric’s life. We just lost another aide a month ago.

One issue is that we live in the country, so the aide must drive out to our place and pick Eric up for the day, and drop him off at the end. The nearest small city is about half an hour away. If I chose, instead, to drop Eric off and pick him up there, that would mean I would be driving an hour in the morning and again in the late afternoon within the 10 am to 4 pm shift. There is no way I would even be able to run my business if I did that.