Probably the most terrifying option for parents of a non-verbal daughter is a group home. Anna can’t tell us, “Yes, I’m ready to try living with roommates.” Instead, she started giving indications like saying, “No” as we turned onto our street and pulled in the driveway. Then, when I told her I would check about her living with friends, she would make two fists and give a squeal, as if she couldn’t wait. Did she understand? What seemed most clear was how unhappy she was at home, just bored and really done with Dave and me. Anna always wanted to be in a room that we weren’t in. If I’d go into the library to work on my laptop, Anna would exit within minutes. So, I decided to dive in, headfirst, to explore the many options in Iowa City.
One of my good friends recommended I speak with another mom whose daughter had been with REACH for 17 years. That’s a long run. This daughter was also nonverbal and had many more physical needs than Anna. I finally called the mom and we talked for about 20 minutes. She had nothing but praise for REACH and its staff. When I asked how she really knew what happened during the day, she said, “Oh, her roommates will tell you!” “They don’t miss a thing. And staff will want your input,” she said. It sounded too good to be true. The ball continued to roll. I met with REACH staff and she put Anna on the list. Never did I guess the call would come in two short weeks.
“We have a spot for Anna,” Diane said. “Already?” I replied. I wasn’t ready for this. She asked if I wanted to see the place. I agreed. Immediately I checked it out on Google Map, using the satellite image to inspect it. Next, I drove by. I knew this neighborhood, not great, not terrible. The duplex was on the corner of a cul-de-sac. It looked nice, not in need of repair. Still, I felt so anxious about the whole prospect.
Now, it’s two-months since Anna has moved. It’s been a rough process and I’ve learned not to expect perfection, ever. Once one issue is reported, addressed and resolved, another arises. Staff changes all the time. One woman, who I’ll call Cici, left after two weeks. Poof. No one heard where she went or why. “Happens all the time,” Ryan said. Ryan is our Family Coordinator, the one I contact with any questions or concerns.
In the first days and weeks, we talked a lot. Now, I’ve learned to call the house when I’m going to visit. I only call Ryan for bigger things, like staff who aren’t the best at helping. One woman, I’ll call Dorothy, was so negative. She was always complaining, especially when Anna didn’t sleep for her. “I told her, you gonna sleep for me,” Dorothy said. She called Anna “manipulative.” Really? It was obvious that she felt Anna needed to follow her rules. I called Ryan and he heard me out. After a long pause, he said, “Dorothy isn’t trainable.” I agreed. Instead, they decided to move her to another home. Such a relief. Anna needs an advocate, not a control freak.