Posts Tagged 'Bethesda Lutheran Communities'

Mondays with Mike: The kindness of strangers

Every time we visit our son Gus in his little yellow house in the quiet little town of Watertown, Wis., we love seeing him. And we are always, just a little, discombobulated. Even after 12 years of his living away from us.

Gus and Beth.

Gus and Beth.

Gus is severely disabled. He can’t talk. He can walk a short distance, clumsily, using a walker, but he spends more time in his wheelchair—which he can propel and steer well enough to get around the little ranch home he shares with three other developmentally disabled guys, and with the staff of Bethesda Lutheran Communities, which operates the home.

He invariably recognizes us, letting us know by letting out a sort of shriek of joy, just as he claps his hands right in front of his face. He makes Gus noises—anyone who’s been around him knows what that means. For those who haven’t, I don’t think I can describe them adequately. But they tell you a lot—whether he’s happy, sad, puzzled, anxious.

Saturday—when we visited to celebrate (in advance of his 28th birthday on September 3)—he was especially pleased to see us. The shrieks and claps and laughs went on pretty much all afternoon.

We walked him in his wheelchair to the little park across the street. We wheeled up to a picnic table, where Beth reclined to catch some rays. Some kids were there—and it was a scene that I remember well from my youth but which I rarely see today. They were anywhere from, o,h 5 to 11 years old. They were playing kickball on the baseball diamond, while their bikes sat parked near the pavilion.

Beth caught a few rays on Saturday.

Beth caught a few rays on Saturday.

There were arguments about in-bounds and out-of-bounds, cries of joy when some one kicked a good one. And then they broke up and reconvened to start a new game of dodgeball of sorts on the playground. It was a game that an outsider could only partly understand, but they clearly had crafted and memorized their own rules.

What really stood out about the whole scene: There was not an adult in sight. The kids had organized this themselves. It was straight out of our childhoods. During summer vacation, we’d leave early and come back late. Entertaining ourselves with invented games, getting bored, inventing new ones. It all was kind of quietly astounding, a dreamy escape to the past.

Gus enjoyed it all, too. He can tell when people are having fun, and he gets tickled by that.

While we sat and took in the breeze and the sun, a little guy—the one I reckon to be 5—came by to pet Whitney, who was off harness. He told us about his dog. Pointing to Gus, he asked whether “that guy broke his knee.” After some back and forth, we surmised that his grandma had “broke her” knee and had been in a wheelchair, hence the question.

We eventually said goodbye and walked Gus back home. We said our goodbyes. It was a good visit.

When he first moved away, we’d stay longer, and usually stay overnight. Things changed when we realized: He’s happy to see us, but really, he’s got his own life now. Not like our contemporaries’ kids—who are going off to college, starting careers and such. But it’s his life nonetheless. He’s happy to see us, we’re happy to see him. It’s our normal.

Always, I wish we lived closer than the 2-1/2 hour drive we have, so we could just drop by when we felt like it.

But always, I leave grateful that he has a home. That he’s done just fine out of our house. There have been glitches, sure, but there were glitches when he lived with us. We didn’t get everything right.

There was a time when I thought I could never let him live elsewhere. To trust him to the world. That’s what all parents have to do. In that way, Beth and I are like all parents who watch their kids leave. Except we’re not. Of course we’re not.

Years ago Beth, in her infinite wisdom, arranged for me to talk to another father who’d thought the same way about his son as I did—no one can take care of Gus like we can. Like I can. And this father ended up hitting an inevitable wall.

That helped me see ahead, and realize, I needed to learn to trust Gus to the world. For me, for Beth, and for him. So far the world’s doing a good job.

Okay, here’s how it is

Me with Gus at lunch in Wisconsin.

It’s our son’s birthday! Gus is, gasp, twenty-five years old today. Seems a fitting occasion to dust off one of the first essays I wrote and recorded for National Public Radio:

Commentator Beth Finke describes the struggle of placing her developmentally disabled son into a group home and the unexpected relief it’s brought both of them.

You can listen to the essay from the NPR site, but if you’d rather read it, hey, I’ll print the transcript here, too. First, though, some back story.

My producer/coach on this piece was Ari Shapiro. These days Ari reports on the White House for NPR, but back then he was a mere voice in my headphones, coaching me to sound more natural during the recording session. My speech was particularly stilted on the first line, “Our teenage son wears diapers.” I tried it over and over, and over and over again, until Ari came up with a brilliant solution. “Start out saying, ‘Okay, here’s how it is,’” he suggested. “Then say the first line.”

It worked. Sound engineers edited out those first five words, and when I start talking about Gus in the finished piece it sounds like I’m talking to you from across the kitchen table. Here’s the transcript of that essay:

Our teenage son wears diapers. He can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him. Gus’ genetic condition doesn’t have a name like Downs or Asperger’s. It’s known by its clinical description: Trisomy 12p.

Mike loved his son from the day Gus was born. It took me a lot longer. Truth is, I was angry at Gus. He wasn’t the baby I expected. A baby was supposed to bring us joy. The way I saw it, Gus brought nothing but trouble.

I did therapeutic exercises with Gus. I cuddled him, played the piano for him. But none of it was heartfelt.
Until one night, when I was singing Gus to sleep. Suddenly understanding washed over me: None of this was Gus’ fault.

“You didn’t want it to be like this,” I said, starting to cry now. “It’s not your fault, is it?” Over and over I repeated it. “It’s not your fault, Gus.” I kissed and hugged him, finally able to love him and to tell him so.

Sixteen years later, Gus communicates by crawling to whatever it is he needs. When he wants to hear music, for example, he scoots to the piano. Gus laughs and sings with the tunes, and claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing.

But as Gus has grown bigger, Mike and I have grown older. Shortly after Gus’s sixteenth birthday, we realized it was time for him to move away. We HAD HOPED to have Gus live near enough to drop by, TO take him out for ice cream, have him for an occasional weekend. Like so many other states, however, ours is in a budget crisis. IT’S ALREADY SHUT a residential facility that was home to hundreds of people with developmental disabilities.

Realizing the waiting time for Gus would grow even longer, Mike and I placed him on waiting Lists all over the country. A facility four hours away contacted us last summer. They had an opening.

Gus cried his entire first weekend away. So did we. “It’ll take some time for us to all get used to each other,” the social worker assured us over the phone. On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter, realizing it really was me. When I stood him up to transfer him from the wheelchair to the car so he could join us for lunch, I realized how much he’d grown. He was up to my chin!

As I leaned down to kiss Gus goodbye, he took off. Couldn’t wait to wheel himself back to his friends in the activity center. Now, when we visit Gus, it’s all fun. No hoisting him onto the toilet, no muscling him into the shower, no changing his diapers. No drudgery.
He seems relieved, too, finally allowed to do things independently of his parents. Hmmm…maybe Gus has more in common with other teenagers than I thought.

Today, nine years after Gus left home and that piece aired on NPR, I raise my cup of java to our 25-year-old and the dedicated staff at Bethesda Lutheran Communities who make his life — and ours — so wonderful. Happy birthday, dear Gus. Happy birthday to you.

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January 2017
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