Trusting our kids who are adult with disabilities to the world

Our son Gus was born with a rare genetic disorder called Trisomy 12p, and at first, no one was sure he’d make it past that first day. Thanks to excellent and skilled medical care, Gus did make it: today, September 3, is his 28th birthday.

Gus lived with us until he was 16 years old, and his dad and I went to visit him at his group home Saturday to celebrate. Here’s my husband Mike with a guest post about that visit.

Happy Birthday, Gus

by Mike Knezovich

Gus and Beth.

Gus and Beth

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 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.

When we visited to celebrate his birthday, he was especially pleased to see us. The shrieks and claps and laughs went on pretty much all afternoon.

Beth caught a few rays on Saturday.

Beth catching some rays

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, oh, 5 to 11 years old. They were playing kickball on the baseball diamond, while their bikes sat parked near the pavilion.
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— one I reckon to be 5—came by to pet Beth’s Seeing Eye dog 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.

Our new buddy eventually returned to the playground, and we 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 to see him again the next morning. Things changed when we realized: He’s happy to see us, but really, he’s got his own life now. Not like our contemporary’s 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 that 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.

*Back to me, Beth. Every family living with a person who has a disability faces unique challenges. Early detection and intervention are the essential first steps, but there is also an urgent need for increased funding and services for children once they grow up. A number of our Easter Seals affiliates offer services for adults with disabilities, and you can search here to find out if the Easter Seals near you is one of them.


 

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  1. Beth Finke Says:

    You know, these comments from you guys tell me there isn’t enough written about transitions like these that work out. I wonder why that is? We all could use more success stories…


  2. Kris Says:

    Thank you so much for sharing this story. It’s so helpful to read such perspective. Our son is growing up and we are faced with when and how he will move away from us one day. Helps to see when others succeed. So appreciate the encouragement.


  3. Beth Finke Says:

    Glad to hear this post helped some. All parents worry about their children, of course, but those of us who have children with disabilities have some pretty unique things to be concerned about. Trust me, you are not alone.


  4. Hilde Says:

    Thank you so much for sharing..it somehow assuaged my fears for my very loving daughter..she has Down’s Syndrome with Autism that manifested late when she was about 12. Yes, the hardest thing is to trust her to the world. I fear that people may not be nice to her and that could spoil her sweet disposition.
    But really, your story relieved me somehow.


  5. Beth Finke Says:

    Yes, I guess that describes me: I am an adult with a disability, and while Gus was living with us, I was taking care of our son who had a disability.


  6. Beth Finke Says:

    We’d be honored to have you feature this post in your newsletter. I hope your readers find it helpful.


  7. Valerie Lentz Says:

    Thank you Beth and Mike for sharing your story. I think this blog post will resonate with a lot of parents. I write the monthly newsletter for the pediatric center at Easter Seals Joliet Region. If it’s okay with you I would love to feature this post in our newsletter for October. I think it would be very meaningful for a lot of our parents who are always worrying about what the future holds for their children.


  8. learning disabilities nursing Says:

    Some people with adult disabilities are caring for a partner or friend, and often as families grow older the person who is being cared for may start to care for their parent or carer.


  9. Beth Finke Says:

    Oh, you are so welcome. Thank YOU for reading the post and taking time out to comment to let us know you liked it. I’ll pass your thanks on to my husband Mike, too.


  10. E. Hart Says:

    Thank you for sharing your wonderful story and message!


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