Who will Care for my Son after I’m Gone?


If you ask any special needs parent, they will tell you that their number one fear is worrying about who will care for their child after they are too old or die.

It’s mine for sure.

I have spent countless hours staring at my beautiful, innocent son and worrying.

When I wipe his face. Or his bottom. When I wash his hair in the bathtub. When I walk him across the street or through a parking lot.

I worry. He is 8. He needs constant supervision.

He will most likely need life-long care.

Jamie and I talk about it when we can. I want you to know it’s not an easy subject to bring up either.

Our kids are supposed to grow up and move out.

It took us years actually to be able to both talk about it rationally.

Life-long care. And I don’t mean our lives. I mean Cooper’s. Let that sink in for a minute.

Cooper needs life-long care.

When we first started talking about it I’d usually end up crying. Or we’d end up fighting.

He was younger then. We still didn’t know what the future held. We still thought….maybe. Just maybe.

But as he’s aged, we know now. We have to talk about the future. We have to plan.

Just like any parent, we want our children to live long, healthy, happy lives.

But what if we are the only ones that make sure that they are healthy, safe, cared for, loved, and clean?

Who will do it when we no longer can?

The thought of putting him in a group home doesn’t feel right. At least not right now.

He’s too vulnerable.

We have talked at length about starting our own group home. We’ve talked about renting or buying a house that we can convert and manage ourselves. Then we would know he was safe.

Although I’ll tell you that puts a different spin on retirement.

Or we could convert the basement of the home we own right now into a safe space for Cooper. We could eventually hire 24 hour care.

Both of these options are so expensive.

I’ve joked with other special needs moms that we should build a gated community with a grocery store, a gas station, a bar and a Starbucks that will be completely safe for our adult children.

We would all live there together.

Only one rule. You must have severely autistic adult child. It would be a dream come true.

Our kids could move around ‘safely.’ Everyone would understand autism. Everyone would care.

Also not feasible. Unless we win the lottery.

But in reality, we really don’t know what we are going to do. We don’t have enough money to buy another house. And we know we won’t live forever.

We can hope that Cooper’s siblings will care for him. But there are no for sures in this game.

Let’s just say his long-term care is on top of our minds.

So, I was absolutely amazed and intrigued when I stumbled across a story on Wisconsin Public Radio about a group of parents in Wisconsin, my neighboring state, taking steps to help their adult autistic children find housing that is both affordable and fits their needs.

How you ask?

Well, they are looking to build it.

Their goal is to build an apartment complex that will open in 2020. They’re calling it Home of Our Own.

(Photo from a Home of Our Own’s Facebook Page)

I was blown away. I was in awe. I was amazed.

These parents are doing everything I had dreamed of doing for Cooper. They are paving the way. They saw a problem and they are creating a solution.

Home of Our Own’s leaders, Mary Anne Oemichen and Susan Wallitsch, met more than 20 years ago, when their children, Amy and Frank, were young. Amy Oemichen and Frank Wallitsch both have autism and are functionally nonverbal.

The two mothers often spoke about their children’s futures, even when they were still small.

Just like Jamie and I, they asked questions like, “What happens when our children grow up? And where are they going to live? And what are their lives going to look like?”

And like Jamie and I, they worry about putting them in a group home over fear of abuse. Sexual, financial, emotional, physical. You name it. People with disabilities are so vulnerable.

The founding families insisted on several points: Home Of Our Own would be open to people with disabilities at any level of severity; income would not be a barrier; and it would be an integrated setting in which their children and others with disabilities would live in a community with people who do not have disabilities.

This is my dream for Cooper.

I highly encourage you to check out their website at https://www.homeofourown.org/ and follow their Facebook page. Let’s learn from these amazing parents.

As for next steps for their apartment complex?

Home of Our Own has applied for tax credits, which would largely cover the $8 million project. They’ve also gotten approval to build the project from New Glarus. They’ve secured a plot of land, which is almost six acres and overlooks the Little Sugar River. With help from an architect, they’ve drawn up building designs.

They are getting close!

And one question….any of my Minnesota friends want to help me build an apartment complex?

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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  1. Morgan Medeiros on February 21, 2019 at 5:09 am

    My mother encountered the same obstacles for my brother, who is severely intellectually disabled. She created a 501(c)3 AFH for adults and it runs beautifully. Challenging, but not impossible. Good to be looking ahead!

  2. Fran on April 25, 2022 at 9:01 pm

    Hello, I am an adult foster care licensor for a county in MN. I read your blog and I was wondering if you would be ok with me adding it to my newsletter it would only be sent to current licensed providers in my county so about 78 people. The reason I ask is you illustrated so well in your blog the thoughts and emotions our families go through when they helping their adult children with disabilities find a home away from home. I would of course document your name and even supply a link to the blog and your new book.