What Are We Going To Do?
Today I got two phone calls. (And honestly every day I get at least 3 calls anymore)
The first was from an 82-year-old grandmother.
Her husband is even older.
Together, they are raising their grandson with autism, a young man in his twenties. She told me they are struggling. They saw me on the news and heard about Dylan’s House. She was hopeful. Maybe, just maybe, there was a spot for him in our new home in Struthers.
I had to explain that we just finished our first house.
One house.
Three bedrooms.
And there are already far more people who need help than we could possibly serve.
I barely hung up the phone when the second call came.
A case manager from Mercy Health called about a patient who is homeless. His adult son has autism, and they have nowhere to go.
Nowhere.
Again, I explained that Dylan’s House just completed its first home. Again, I listened to the desperation in someone’s voice. Again, I added another name to a list that keeps growing longer by the week.
There are at least thirty families on that list already from the last month alone- There are many more on numerous lists out there.
And those are only the people who found us.
What about the ones who haven’t?
What about the families who are quietly struggling behind closed doors, exhausted and scared, wondering what happens when they can no longer do this?
Then I look across the room at my own son.
Tonight, Dylan is with me at the lake.
And if I’m being truthful, it wasn’t an easy evening.
From four o’clock until nine o’clock, he repeated the same phrase over and over and over again.
He was wound up.
He wasn’t listening.
He was rambunctious.
I struggled to get him into the shower.
At one point, I lost my patience and told him that if he couldn’t act like a young man, maybe he wouldn’t get to keep coming to the lake.
The words came out before I could stop them.
Now I sit here feeling guilty because I know better.
I know he isn’t giving me a hard time.
He’s having a hard time.
And I also know that tonight, like many nights, he will probably be awake for much of it.
The truth is, I do this twice a month now.
That’s it.
Two weekends a month.
And tonight I found myself asking a question that hits me harder every year:
How did I do this for seventeen years?
How did I survive the years when there was no break?
No respite.
No housing.
No staff.
No routine that belonged to anyone but me.
And if I’m asking that question after one difficult evening, how are all of these parents still doing it?
How are these grandparents doing it in their eighties?
How are families carrying this every single day?
What are we going to do?
Because this isn’t a future problem.
It’s happening right now.
The housing crisis for adults with autism isn’t coming. It’s here.
Parents are aging.
Grandparents are exhausted.
Caregivers are burning out.
And adult children with autism are waiting for services, housing, support, and dignity.
I still don’t think the average person truly grasps the size of this problem.
Until you get the phone calls.
Until you hear the fear in someone’s voice.
Until you realize that building one house doesn’t solve the problem—it simply reveals how big the need really is. You just can't understand this if you don't live it.
Tonight, my heart is heavy.
Not because of Dylan.
Not because of one difficult evening.
But because I know there are thousands of families just like ours.
And for every call I answer, there are countless others who don’t even know who to call.
