The question has always been there, hanging over our lives. As Max gets older, it looms larger: Where will he live when he's an adult? Will he go to a group home or some sort of residential facility? What kind of options might exist down the road that aren't available now? Who will look after him the way Dave and I do? Or will Max always be at home with us? A few days ago, I thought I glimpsed a potential answer...but it really wasn't.
Sabrina signed up to volunteer at a local temple for a Saturday morning service for adults and young adults with disabilities. Max had speech therapy, but might attend at some point. Sabrina and I headed over, found the classroom and chatted with the woman leading the service as attendees arrived, middle-aged adults with Down syndrome and intellectual disability accompanied by aides. A lot of them lived in group homes, I found out, run by an organization in our state.
A young woman walked in wearing a t-shirt emblazoned with "Love Love Love" in sparkly letters. The leader told me that she resembled another young woman who was her best friend and soon enough, that woman arrived and they hugged. They did look alike, and she was wearing the same shirt in a different color. At first, I wasn't sure if they were attendees or volunteers. Later, I found out they lived in a group home together. They appeared to be in their twenties and of all the adults there, they were most comparable to Max in terms of communication and social engagement. I was intrigued.
Sabrina paired up with a woman who needed help turning the pages of the service book. Minutes later, I left and went outside to the car; I wanted Sabrina to be independent. I sat there and googled the name of the organization, and discovered that they ran 11 group homes, a supervised apartment and supported living arrangements in our area. I was floored. All this time, I never knew.
Turned out there is a group home in our town, an even bigger whoa. It took some digging but I found the address. It's located in a part of town that's fine but not especially nice, and per the Google maps appeared to be across from a park where Sabrina has played lacrosse. I stared and stared at the photo, as if looking could tell me something. The home appeared to be well kept. But what lay inside?
The window to the classroom was open and I heard the prayers and songs drifting out, enveloping me in hope. I returned before the hour was done and stood in the back.
One of the "love" t-shirt women was pouring cups of juice for the group. Two attendees, a man and a woman, sat in front of me next to an aide. I watched as a volunteer walked over to the woman, leaned down, grasped her shoulders, looked her in the eyes and said, "We've known each other for a long time. You know I love you, right?" The woman beamed at her.
My eyes filled with tears and I turned my head to the side. I was overcome with emotion. I wondered if the older adults had family who visited them. I pictured Max as an adult in that room, accompanied by an aide, alone without me. It was too much to ponder.
I wiped my eyes and turned back to watch the end of the service. The final song was about what God had created each day of the week. A man jumped up to sing it and once again, the voices in the room rose in song, especially ebullient at the end of each refrain: "And it was good."
Most of the group headed to have lunch afterward. We couldn't stick around but going forward, Sabrina will be there for that and the afternoon program. Maybe Max, too.
On the ride home, I felt compelled to drive by the group home. But we were having a photographer come over for a family photo shoot and Sabrina needed a couple of hours to do her hair and get dressed, because: tween.
I got there early the other morning. Sure enough, it was right across from the park I knew. I drove into the lot directly across the street, got out of my car, stood there and stared. Nobody was around. It was a gray day. The home's curtains were closed; all I could glimpse was a lit light fixture. The house was pleasant enough. Caught up in my anxiety about Max's future, though, it looked depressing. I thought of those aides in the classroom. Some had seemed warm and nice. Some had appeared to be a bit brusque, treating their clients like errant children, which perturbed me.
Who would be there to help Max with food prep? To help him take a shower? To talk with him about his interests and engage him? To encourage independence? What friends would he have in a home? Would his therapists go there? What activities would they do? Would he miss us?
I felt increasingly anxious as I stood there. Finally, I got back into the car and drove off to do errands.
I've tried looking up the other homes. My search skills are pretty good, but I managed to Google only one nondescript ranch. I'm guessing the fact that they're not easily found is purposeful, to protect residents' privacy but also potentially shield them from small-minded locals who might not appreciate having such a home in their neighborhood. I could probably find more of the houses by asking around, but I think that would be headed down an (even more) stalker-ish, obsessive road that will do me no good.
Finding residential placement isn't easy in our state. I've heard of parents pooling resources, including funding from their states; purchasing homes for their adult children; and staffing them with aides. Or perhaps Max will choose to live at home, and Dave and I will spend our retirement visiting fire stations around the world with him. (Yes, I've mulled over that, too.) In my fantasies, Max is living on his own or with a friend, but I am dubious mainly because of the life-skills help he needs.
What I do know is that Dave and I will be there, when the time comes, to research the heck out of all possibilities—residences, along with supportive organizations and parents who've been there, done that. We have pushed and fought and paved the way for Max for these past 15 years, and will do the same for housing when the times comes, guided by both his needs and wishes. Hopefully, he will advocate for himself as well.
What I also know—the common sense that forces that anxiety monster to stop rearing its head—is that Max will be OK. It's impossible to even guess what his capabilities will be as an adult but no matter what, he will still be that charming, cheerful, good-natured yet determined person. He will find his place in the world because he always has.
To paraphrase that line from the prayer-service song: "And it will be good."