Uninvited

I was expecting the call, but not the topic.

“How’d it go?” I asked Pat, our family caregiver who has been with us for over 20 years.

“It was great, very orderly and no medication issues at all this time.”

The camp arrival process was sometimes lengthy given the precise nature of the medication check-in. Prescriptions, labeling, and camp forms had to match exactly, an understandable requirement for the special needs population that is served by the week-long winter holiday camp.

“And how was Madison with waiting?”

“She was fine, no problems. She knew the schedule and was happy, in a great mood.”

“Great!” I was relieved. Madison was not a good “wait-er” and prone to upsets if she had to wait too long without knowing what was next on her schedule.

“But, Becky,” Pat said, clearing her throat before slowing down her words, “they wanted me to tell you that if Madison did not sleep well, she may be sent home.”

“What?” I shifted in my wheelchair, leaning forward on my armrests to press the phone harder into my ear. “They said what?”

“They said she is disruptive when she does not sleep. And they don’t have the enough staff to accommodate her when she gets up early.”

“Wait a minute; you said they will send her home?  Because she doesn’t sleep well?”

“That’s what they said.”

I could feel the anger heating up the back of my neck, but I didn’t want to alarm Pat and put her in the middle of the tempest brewing in my mind. I swallowed hard and replied in a tight voice, “Okay. Let me get into the details.” And then I added, reminding myself of the calming nature of gratitude, “Thank you so much for taking her to camp.”

I clicked off the phone and with it went much of my grateful spirit as I faced the reality of the situation. How could they do that? That camp is over an hour away. How would she get home? I can’t just run out to get her.

Paralyzed for almost 17 years now, I’ve learned to drive—but never felt safe enough to drive Madison. She can be an exuberant passenger, raising her hands above her head and fist-pumping them in unison so rapidly that the car shakes when a favorite Barney tune or Mary Kate and Ashley video pops into her head.

In fact, I usually have two caregivers take her to camp. If she didn’t stay, I would have to find transportation and with New Year’ Eve on the horizon—the whole point of the camp—who could help me?

But beyond the logistics, the process infuriated me. Madison had been a camper there for almost 10 years. And now I learn that her sleep issues are significant enough to jeopardize her camp stay? They chose to uninvite her then, at check-in, through a caregiver?

I looked at the endearing photo of her on my desk. Bless her heart, my Madison. Like many kids with autism, she’s never slept well—beginning at birth. But whether in my home, or in her residential school, and now in her adult placement, we’ve continued to address it with sleep logs, reviews, and medication adjustments as needed.

I shook my head, took a deep breath, and began my due diligence. I called and emailed and researched and escalated—all the things we do when we sense an injustice is hovering over one of our children.

I didn’t like the facts I uncovered. I learned that there is a sleep requirement in the fine print of the application. In previous years, it seems that Madison had not been making this minimum. Although I’d received a few verbal reports of some sleep issues (among the glowing reports of her many successes), I didn’t know about the minimum or its consequence. I thought I had addressed any concerns with additional sleep aids.

Apparently not.

But as I listened to these caring professionals explain the rationale of the fine print, I began to understand. Madison would often wake very early and disturb the other campers. When staff would take her out of the situation, the staffers would not get the sleep they needed.

Did I want that? I’m sure these campers wanted a good camp experience, too. Did I want Madison to take that from them and from the camp counselors who cared for them?

So when the call came two days later that she was not sleeping well, I calmly activated the Plan B I’d devised with the help of the apologetic and compassionate camp staff. Within hours, Madison was picked up and returned to her group home after a quick stop at home for our late Christmas celebration.

As I looked at my daughter’s bright but sleepy eyes, I wondered if maybe I was forcing camp in into her world. Was it time to give this up?

More importantly, how will I know?

And the next day, I began to call and email and research and escalate—all the things we do when we sense a solvable problem (I hope!) is hovering over one of our children.

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