A Choice Age


“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”

With a fresh coating of ice on the last three inches of snow, I pulled up in front of my computer desk and dialed the number.

No answer.

It was time for Madison’s annual review. When she turned 21, she moved from the school setting to the vocational setting, from an Individualized Education Plan (IEP) to an Individualized Service Plan (ISP).

“I’m not sure if they are there or not,” I texted again, “but I’ve decided we shouldn’t go.”

The meeting was an hour away. My van was pretty good in the snow—extra heavy because of the built-in ramp for my wheelchair—but my driveway had not been plowed nor had our neighborhood access road. I wasn’t sure it was even safe for my sitter to come in to drive me.

I dialed again and this time reached a staff member. Most of the team members had made it in so we decided to press on and arranged a conference call. We had rescheduled twice already, thanks to the ridiculous weather.

We discussed Madison’s residential program, her behavioral plan, and completed a thorough medical review noting improvements in all areas, including sleep. But the most interesting change I heard was in the vocational program.

As we reviewed her goals, I kept hearing words like, “her choice to do,” “unless she refuses,” “she can comply or not,” “if she likes.”

“Is this language different from her IEP goals? Has something changed?” I asked the team on the other end of the line. “It sounds like she doesn’t have to do the work anymore. Is it now all optional?”

“You are correct. It is different,” said one voice. “It’s not entirely optional, but yes, Madison now has the choice to refuse to do the work.”

I learned that because she is 21 and receiving adult services, the provider was required to structure her program that allows for “choice and individual preference.”

As I mulled that over, I wondered about that requirement and the message it sends. Just because Madison is an adult now, she can choose not to do the work? Hadn’t I just spent 21 years trying to keep her on task? Spent extraordinary time, money, and effort trying to figure out ways to address non-compliance? And now that she’s an adult, refusal behavior is acceptable?


I’d been taught and taught others to “not give in” to her refusal to do what was asked of her. “Always come back to what she’d refused to do,” we’d learned. “Don’t let her get away with it.”

“Try better,” became our mantra.

After more research, I learned that even though Madison technically has the option to refuse the work per the adult program requirements, she is still encouraged, receiving positive reinforcement for the choice to do the task. She may need more breaks or be allowed extra time to complete the work, but additional rewards are built in to encourage task acceptance.

And, if she makes a choice to refuse to do a task, the consequence may be a challenge to do another.

Choice and consequence. I liked those terms used together.

I thought about my other kids, adults both living 3000 miles away from my hands-on guidance. I’m sure in their work and school life that they have refused to do the work on occasion.

But not without consequence.

And now Madison joins them in the adult world of choices and individual preferences. I can only hope the lessons of “try better” stays with them and serves them all well.

This column was originally published as part of my “Tuesdays with Madison” series at AutismAfter16.com.