What Do You Do After an Epic Fail?

I’m not sure this Thursday’s “thought” will be very inspirational. I’m reporting from a dark, lonely place. The pit.

As most of you know, Madison, my 24-year-old daughter with autism, has hit a series of rough patches in the last two years, including two psychiatric hospitalizations, multiple trips to the ER, new doctors, meds, and additional cause and effect tracking of her self-injurious behaviors at her residential placement. Late last summer, she was admitted to a specialized in-patient unit that assesses these negative behaviors and creates treatment plans to address them. We felt fortunate to have her there. Upon discharge, they provide extensive training to the residential placement staff to insure a smooth transition back to the day program and group home.

Madison’s progress has been incredible.

However, shortly after her admission, her residential placement notified us they would be discontinuing their adult services, both the day program and the group home. Shocked, we immediately began the difficult task of finding another placement for her.

Madison has been with them for nearly ten years.

In early December, we thought we’d found the perfect choice. We made it through the first round of reviews and were invited for a site visit. A welcoming staff, a wide range of adults with varying disabilities, and a warm and knowledgeable management team greeted us. I was impressed by their long history of successful group homes and day programs, their deep roots in the community, and their forward thinking attitude toward community-based programs.

Finally, another evaluation team visited Madison on the in-patient unit a few weeks ago. The admissions committee had every piece of information you could possibly imagine about my daughter. It looked like the perfect match.

We were told a decision would be made, either way, by last Thursday. I was both excited and nervous; after almost three months of searching for a new residential placement for Madison, this was the only opening we had found.

We waited.

As my father used to say, when you’re going through rough seas, make sure you have people in the boat with you.

So I did.

Thursday morning I reached out to my family, friends, special groups at church, and the staff and friends from Pathfinders for Autism, the non-profit I helped found seventeen years ago. I even posted on Facebook, asking all who knew my Madison or me to think positively and prayerfully about this decision and hope the answer would be yes.

At 6:15 p.m. Thursday evening, I got the answer.

It was not yes.

As I listened carefully to the voice delivering the news to me, I heard what sounded like a soft “no.” The representative conveying the information indicated she may go back to the decision-makers the next day to point out some considerations that may have been overlooked.

Wait.

Overlooked considerations?

Really?

Before I let the tiniest bit of acceptance of the “no” enter my mind, my sales training from my IBM days kicked in. Maybe we were still in the hunt. Maybe it was time for what we used to call “best and finals” when a customer narrowed the selections and asked one more time for the best we had to offer.

“Oh, let me help with that,” I offered. “What are their concerns?”

Apparently, they felt like their staff could not give Madison the support she needed. So I went into hyper-creativity mode, brainstorming with those who had helped me with Madison’s previous transitions. I worked until 1 a.m. and was up at 4 a.m. with even more ideas—a transition assessment consultation, recruiting/retention incentives, recorded staff trainings, and a possible internship program. Perhaps this kind of support would relieve their concerns. I sent these ideas plus my pledge of steadfast support and advocacy to those who mattered at 7 a.m. the following day.

I got crickets.

Nothing.

All. Day. Long.

Perhaps they were just giving it careful consideration. But given all the effort I had put in, it felt like an epic fail. What do you do when you think you’ve done everything possible to make something happen and it doesn’t?

I had dinner with a dear friend that night. We popped popcorn and caught up on episodes of Victoria. It was refreshing to let this young queen’s escapades take up room in my mind.

The following day, Saturday, I got up and hugged my dog extra tight. He made me laugh when I put a Snapchat filter on him.

He’s not the only one whose mind had been blown.

That morning I took a little extra time with my coffee, inhaling it deeply and letting the sweet cream bring it to life with flavor.

But all the distractions could not comfort me. My heart ached for my daughter and what I could not provide her. It was like an emotional hangover. My head ached with spent efforts. I was mentally depleted and physically nauseous with disbelief.

I guess I had binged on hope.

After my quiet time readings, I decided to let time rule the day, not my agenda. It was time to get out of the driver’s seat and become a passenger.

Eventually it was time to have breakfast. Then it was time to let the dog out. Then the sun peeked out from behind some clouds, reminding me that the new day was moving forward, with or without me, so I might as well get on board and see where it could go.

Hope can be exhausting.

Acceptance can be a relief.

But, was it time to accept it? Even if they say no again? For now, I know I must accept this: I have no control over what happens next in their process. I can only control how I respond to whatever is next.

So I am down, but not out. I am crushed, but not destroyed. I’m in the pit, but I don’t plan on staying here long. I can hear Dad reminding me, “God didn’t bring you this far to drop you.”

So what am I doing next? We’ll start looking for a plan B while still researching the decision factors. That will be important in whatever placement is next.

Meanwhile, I am getting more people in this boat with me! If you have autism expertise on securing adult group home placements or have connections with someone who does, please let me know. This challenge is not mine alone. This is a concern of many parents who have adult children with autism.

Thanks for letting me share my story. I’m feeling better already. And who knows, maybe by the time you receive this, I’ll have an inspiring update to share!

My best–always,

Becky  (Nana B)

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