Posts Tagged 'group home'

2015’s most visited blog post

While looking over (okay, listening to) stats from this year’s Safe & Sound blog, I discovered that more people visited here on May 10 than any other day in 2015. No surprise, really. That’s the day we published Mike’s very moving post called “Our version of all right.” The post was part of his weekly Mondays with Mike series, and I’m republishing it today for any new readers who missed it the first time. Those of you who read it back in May might want to read it again, too — it’s that good.


Mondays with Mike: Our version of all right

Originally published May 10, 2015

A couple weeks ago as I walked to a sandwich shop I was stopped in my tracks by the sight of a boy in a wheelchair and a man, presumably his dad, collecting themselves on the sidewalk. They had clearly just unloaded from the car parked nearby, and were readying for a walk.

We had a nice visit.

We had a nice visit.

It wasn’t the kind of wheelchair designed to be propelled by its user. It was, instead, focused on holding the boy—who clearly had substantial physical disabilities—in proper posture, with a headrest, and foot rests arranged for that purpose, and with high handles to make it easy for someone else, in this case his dad, to push. Seeing it was a flashback to my own rituals of outings with our son Gus.

The father made a last round of adjustments to the boy’s ball cap, to his seatbelt, and then gathered himself to push his son on a walk.

For a moment, I wanted to walk up to him to say something like, well, I didn’t know what. That it’ll be all right? What the hell did I know about whether it would be all right? And as a frog the size of Alaska grew in my throat, I thought better of saying anything to him just then, because well, a stranger walking up and breaking into tears might not lift up his day.

By the time I left the shop with my sandwiches, and I was more composed, the man and his son were long gone.

This past weekend Beth and I traveled to Wisconsin to see our son Gus, who is 28 and living in a group home with three other guys. The weather was nice, and—though Gus did eventually learn to propel his own wheelchair, I supplied the horsepower this time, pushing him with Beth holding onto my arm. (Whitney stayed in our hotel room, as she is either jealous of or unnerved by Gus; a little of both, I think.)

We had a happy, uneventful visit, like we always do, and are always grateful to have. We took our Zipcar back to our Milwaukee area hotel, visited with a friend who moved up there recently from Chicago, and spent a quiet night.

The next morning, we headed to the Amtrak station and boarded right on time. We sat up front in the disability seats so Whitney had room to stretch out. A woman who was sitting in the disability section across the aisle from us noticed the dog after we settled, leaned over and asked whether we wanted her space, as it provided more space for Whitney.

After a few seconds, she realized we had the same kind of spacious accommodations and said, “Oh, I didn’t see you already have room.”

Minutes later, after the train eased out of the station, she leaned over and said to Beth, “Can I be so bold as to ask how long you’ve had that dog and how it’s working for you?”

Well, 20 minutes later we’d learned that she’d lost her sight in one eye and the other was in bad shape. All to diabetic retinopathy—the same thing that got Beth’s eyesight decades ago. That she was a couple years older than us, and that she’d been diabetic for 50 years. A nurse herself, she’d always been praised by her doctors for being a model diabetic. But that’s not always enough.

She and her husband’s situation is a lot like Beth’s and mine had been some 30 years ago. She’d had good doctors and bad doctors and doctors who had the bedside manner of Attila the Hun. She can see some out of one eye and is in that awkward phase where she is doing just well enough and badly enough by herself to annoy or frighten the people around her. She isn’t blind—yet, but she wants to get ready in case total blindness comes. But how? She needed help but didn’t want to drag down her husband with endless needs, nor did she like losing independence and needing his help. For his part, her husband, a “type A” as she put it, seemed to be struggling not to over protect.

Her experience rang so familiar that it gave me that feeling I had when I saw that man and his son. This time, though, Beth could carry the conversation while I reset myself. Eventually, as Beth and I related our experiences—and how similar they were to our new acquaintance—it seemed almost revelatory to the woman across the aisle.

On her request, I wrote down the title of Beth’s book and said, “I added my email address, too” and let her know she could contact us. We said goodbye and I followed Whitney as she led Beth off the train. An Amtrak redcap came to assist our fellow traveler.

I would’ve liked, I suppose, to tell her everything will be all right. The same thing I guessed I’d hoped to be able to say to the young father on the street.

But I didn’t. Because I couldn’t, honestly. Beth and I are better than all right. But it isn’t the all right either of us had in mind. And it was harder than hell to get to our version of all right. That’s what the father and his son on the Chicago street and our stranger on the train face. Even if they have great friends and family and resources, it’s going to be really hard.

What I realized, though, was what I saw in that woman’s face was not so much a revelation as relief, relief in knowing, even briefly, that she wasn’t alone.

And if I ever see that man and his son again, that’s what I’ll tell him. You’re not alone.

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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