A Bright Spot for Madison

We did it! Somehow we triumphed—at least for thirty-five minutes. I’m not sure exactly who we defeated—the meds, the hormones, or the autism—but for thirty-five glorious lunchtime minutes, I had my daughter back.

It was heaven, a far cry from the rough patch visit when she tried to dump me out of my wheelchair or the more recent incident of self-injurious behavior that sent her to the ER.

This time she was calm. Attentive. And surprisingly verbal.

Madison’s speech is limited, and painful I think. You can almost see the hurt in her eyes as her mind searches for the words. She spoke at age five, but only after months of a specialized therapy with flashcard-like drills that repeated the same questions until she memorized the answers.

If she does speak, it is a learned response to a short question:

How are you?                       I’m fine.

What’s up?                          Not much.

How’s life?                          Not bad.

Or it can be a short phrase she has mastered in response to a prompt:

I want ___?                        Milk, please.

                                         Potty, please.

                                         Graham crackers and peanut butter, please.

                                        Schedule please.

But in my last visit, I couldn’t get Madison to look at my eyes, much less respond to any questions or prompts.

“Hi Madison!” I said as she came into the room where we’d brought in her favorite McDonald’s lunch. “Give Mommy kiss.”

And she did, and then plunked down beside me and dug into her chicken nuggets. As she munched on her fries, I started our scripted “conversation.” She answered every question and responded to every prompt. She was back!

“Becky, she asked for you,” her aide said quietly.

“Without prompting?”

“Yes, as soon as I walked in the room she said, ‘See Mommy please?’ And, she’s been asking about C-A-M-P,” she whispered, mouthing the letters of the word Madison knew well.

I was stunned. That was the rarest of all—unprompted speech. It made me happy and sad at the same time. I was happy that she expressed herself, but sad because I knew I could only answer one of her precious requests.

“I’m here, Madison,” I told her as I took her hand and rubbed it. I touched her cheek, still swollen, but better. “No hit, Madison,” I said softly. “Be gentle.”

My touch seemed to soothe her. She smiled and we got a quick photo. I knew I would visit again, but wondered if camp could ever be a possibility for my Madison again.

She finished her lunch with the treats from home—Cheetos, fig newtons, and peanut butter graham crackers. Then we looked at a photo book I’d made of happier times.

She was content.

I was over-the-moon with joy and gratitude.

Until a few days later when I received another 4 p.m. Friday phone call. From Madison’s nurse. In the ER. More self-injurious behaviors. She’d targeted her cheek again.

“As parents of children with autism, we’re fighters,” Baltimore sportscaster Rob Long said three days later at our Pathfinders for Autism golf tournament dinner. The crowd quieted at those words, so direct, so true. Each with a different battle, I thought to myself, but a common resolve that steadies us, steels us, and propels us through the rough patches to celebrate those bright spots, however brief they may be.

We have to “kiss the joy as it flies,” the poet reminds us.

And I had.

But now, it’s back to the trenches, to the fight, to the resolve that every parent has when they wonder, What can I do to make my child’s life better?

Maybe I will visit next week. Maybe the meds need more time to be consistently effective. Maybe camp could be a reward. Maybe we could try it for a day or two…

—

Becky is a current officer and a founding board member of Pathfinders for Autism. She was paralyzed in 1997 by Transverse Myelitis, a rare inflammation of the spinal cord that began as the flu.