Floating Holidays

Madison wave 3 DSC_0101

Photo by Brian Doyle

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

It wasn’t my idea.

Three weeks ago, she asked if Madison would be home before the holidays.

“I’d like to get some photos of Madison with the kids,” her step-mom had asked.

“Sure,” I replied, wondering how I could pull that off. Although our reconfigured families are more than amicable—flexible visiting arrangements, shared holidays and even an annual vacation together—Madison is always a wild card when she joins us.

The holidays are the worst.

One Christmas, I had purchased a large TV/DVD/VCR combo, the pre-flat screen 53-pound version. I had hoped to use it to transition Madison from VCR tapes to DVD’s. After she went to bed, the other kids helped me swap out her 13-inch combo for the monstrous replacement. We plugged it in and hooked up the cable. We thought she would love the bigger screen and especially all the new buttons. She had already worn the lettering off the REW button of the old set.


Christmas morning, she raced into the room to grab a video to play, her customary first activity of the day. She stopped cold, confused by the new TV. We showed her how to work it and put in a new DVD—“Barney”, of course—and returned to the tree for more presents.

“Mom,” one of the kids hollered. “Look at Madison!”

As I spun around to peek into her room, I saw Madison lifting up that humongous TV and pulling it off the counter, the cable connection the only thing stopping her.

“Madison, put down,” I instructed. “Look, new TV, new video,” I said and pointed to the VCR opening. This time we put in an old “Barney” tape.

Again, she seemed ok, until she disappeared to the basement and came back with the old TV.

She looked at us and said one of her few meaningful phrases, “I need help please.”

So we swapped back the TVs and eventually made a plan to keep both TVs and phase out the old one. But, that Christmas morning was stressful—almost dangerous. If she had dropped the TV it would have been disastrous.

Another Christmas morning, Madison began her day soiling her pajamas and then finger-painting with it. My oldest daughter, then 14, had to clean up the mess since my wheelchair prevented access to her room and our regular caregiver had the holiday off.

That was it for me. After that episode, I decided that our family needed floating holidays. We would celebrate when we wanted to celebrate and not let the calendar run—or ruin—our life.

Our best gatherings with Madison are generally food-based and short. If there are too many people or too much commotion, Madison loses it, tantrumming in anger or crying quietly with tears streaming down her face as she sings her sad song of mournful crescendos. Both break my heart because I still don’t know what causes them or how to stop them.

But we try.

Floating holidays help. We pick a time and location that works best for everyone, plan for the happy-mad-sad-Madison possibilities, and execute.

So Thanksgiving this year became a photo-shoot Saturday, with plenty of food, caregivers, photographers, and wardrobe changes for both families.

Madison was extraordinary. She let her sister dress her twice and actually looked at the camera a few times as we prompted her, “Madison, show me your shiny teeth,” and “Madison, say, ‘cheese.’”

But the best shot was her response to my prompt, “Look at Mommy,” as I waved my hands high in the air to get her attention.

True to form, she waved back—the darling.

And we all laughed, even Madison. She was so engaged, a rare treat for all of us.

And I was relieved, but mostly grateful and deeply happy that I, too, had responded to a worthy prompt.

Even though it wasn’t my idea.