08/12/2014 01:04 pm ET Updated Dec 06, 2017

Life, Liberty, and the Pursuit of Independence for Young Adults With Autism

This is the first column I've written since the winter. Back in those frozen, dark days, I chronicled my quest to beat cabin fever by de-cluttering my house. When I'd cleaned out all the cabinets, I moved on to the basement, then the attic, and finally, my closet. At that point the weather got particularly cold, but only because I'd given away most of my clothes.


All that frantic activity was a way of delaying what I really didn't want to do: get on my computer and find a place that would enable my 22-year-old son Casey, who has autism, to live as independently as possible. Why didn't I want to do this? Because my gut told me there'd be nothing. Nada. Zip.

My gut was right. I was looking for a supported living residence where Casey could have his own apartment, meaningful work, a structured social life, and assistance with several activities of daily living for which he requires support. Right now, I provide that support. But what happens to him if something happens to me? The more I Googled, clicked and read, the more frightened I became for my son's future. There's nothing where we live for young adults like him.

But my gut was wrong, too. I discovered places cropping up in other areas of the country, in California, Minnesota and New Jersey, in Cape Cod, Chicago, and Louisiana. Places formed by parents just like me, with kids just like mine.

And then my gut said something I really didn't want to hear. That if nothing like this existed where we live, I was going to have to do something that scared me almost as much as the thought of what my son's life might be like after my death. I was going to have to stop hoping "someone" would do "something." I was going to have to stop praying that the perfect supported residence would magically appear in my community. I was going to have to stop worrying and start building.

Me. A woman who can't drive a nail into a wall without smashing her thumb and destroying the paint job in the process.

But build I will. Or more accurately, we will. With the assistance of a wonderful attorney well-versed in the nonprofit world, and two whip smart, well-connected friends (one of whom also has a child with special needs), I formed Casey's Place in June. Our mission is very simple: to build a supported living residence for these exceptional young adults right here in their hometown.

Of course completing this mission won't be easy. We need to finish our business plan, get buy-ins from the powers that be, and convince some kind soul to give us a piece of property. And if we can't find such a soul? We need to raise at least three million dollars to cover land and construction costs. That's a lot of money, but I'm just enough of a hopeless optimist to believe we can do it.

If you'd like to help, or simply be kept apprised of our progress, drop me a note at I promise to respond between meetings and bouts of de-cluttering. Yes, I'm still a clean freak, but six months ago I did it so I wouldn't think. These days I do it so I can. Today I'm cleaning out the garage in an effort to come up with a sure-fire fundraising plan, and maybe even enough room to park the car. Wish me, and Casey's Place, luck.