Tuesday, December 28, 2010

Define "normal"

A few years ago, I was considering moving Tevis out of the group home and back home with us. Over the years, his explosive, aggressive behavior had decreased, and I thought that it might work. When I had a meeting with the owner of the group home company and some other staff people, I was taken aback at their negative reaction to the idea. One of them said, "It's not normal for someone Tevis' age to move back home with his parents. People his age are leaving home, not moving back."

I've thought a lot about that statement since then, and especially since Tevis moved with us to Saint Louis. What exactly is "normal?" When someone has significant disabilities, why single out one facet of a normal life (moving out of the family home) and use that as the standard of what is normal? In doing so, many other aspects of a normal life are sacrificed. What is normal about being "cared for" (I use the term loosely) by an ever-changing staff, on three shifts, weekday and weekend, with a very high turnover rate? What is normal about having to worry if the next staff person will be fired and/or arrested for assaulting a resident? What is normal about spending most of your time shut in your room, watching TV, sleeping, and, well, let's say, entertaining yourself? What is normal about being unable to help yourself to a snack or go outside by yourself?

So, according to those folks, Tevis has regressed by moving back to his parent's home. But by every other standard his life is now much more normal. He spends his days in a variety of activities: drawing, taking pictures with my old digital camera, watching a little TV, playing his electronic Leapster games, and working on my laptop. He fixes his own breakfast, lunch, and snacks, does his own laundry without being told, and takes the trash out to the dumpster. He goes to the grocery store and library, and plays basketball with The ARC on Saturdays. He checks his blood sugar twice a day and takes his own medication. He can cook a grilled cheese sandwich, and he recently bought a blender and is now the "Smoothie King."

Recently I've been taking an online course on psychosocial rehabilitation. It's defined as providing the skills and supports to enable a person to live in their environment of choice. "The environment of choice" is the key. At Thanksgiving dinner, my son Jesse was asking everyone what they were thankful for. Without hesitation, Tevis said, "I'm thankful I don't live in the group home any more." Enough said.