THE BLOG
12/18/2013 06:17 pm ET Updated Feb 17, 2014

Autism and Holidays

I sent out the email six weeks in advance. The subject line: "When Holidays Collide."

Dear Family, I wrote. Whether you're celebrating Thanksgivukkah or Festivus this year, this is your official invitation. Manischevitz-brined turkey? Challah stuffing? Cornucopia of cranberry gelt? Who knows? Don't forget to pack a menurkey.

In an unprecedented and happy convergence of the Hebrew and Gregorian calendars not seen since 1888, the first day of Hanukkah was the same day as Thanksgiving. I cooked for a week. Fretted over the menu, the party rentals, the decorations, the flowers. In the midst of my manic preparations, I read an article in the New York Times that reframed the holiday, called "In The End It's Not About The Food."

"I don't care if you put your elbows on the table. I care only that you are happy," the author said. "A desire to serve... is the ability to be able to give yourself to someone else to try to make their life better... The dinner party is an opportunity to serve your friends, if only for one evening. Holidays are a chance to do that for your family."

That grounded me. It got me to slow down. Concentrate on what mattered most. It wasn't about reproducing a menu from Gourmet Magazine.

In our large family, I am the Keeper of Thanksgiving. I savor it all: the crimson and umber perfection of cranberries simmered in maple syrup and orange marmalade. Spiced yam pudding nestled in its crust of crushed gingersnap cookies. Meaty-rich mushroom tarts. Early Thursday morning the kitchen filled with the whir of the mixer. The burr of the coffee grinder. Ella Fitzgerald smooth on the stereo. I was knee deep in pandemonium and preparations. But thanks to that article I felt centered. Peaceful, as we unpacked rented chairs and unrolled newly cleaned rugs. Serene, as I smoothed tablecloths and folded napkins into graceful shapes. I'd found my mellow.

It lasted despite broken glassware, cranberry relish on the spotless rug, and certain relatives who pulled me aside to complain about other family members. Ah, yes. The simultaneous comfort and constriction of being with family.

After dinner, our 26-year-old son Jonathan took charge. He and his cousin Lily had organized a gift-giving game. Everyone had been asked to bring an inexpensive, wrapped item. Each of us drew a number. The first person got to pick from the pile of gifts. The second person could either choose to pick from the pile, or "steal" the first person's gift. I'd wrapped up a Gnome Away from Home -- a mini traveling gnome figurine and booklet of gnome travel tips and travel lore kit. Everyone cracked up. "Mom, you really got the spirit of this game!" Jonathan said.

Our autistic 21-year-old son Mickey couldn't follow what was happening. "Just watch how the game is played," I told him. "The gifts are really silly." We watched his cousins unwrap The Wit & Wisdom of Winston Churchill. A Sarah Palin Going Vogue Magnetic Dress Up Doll. Mickey didn't understand.

"What's so funny?" he asked, forcing a loud laugh whenever the crowd erupted. He looked bewildered. My heart pinched for him. How hard always to be one beat behind. Not to get the joke everyone else is in on. It was upsetting for him. I could feel his anxiety. But this thought was swept away in a fresh round of hilarity.

"Can I go now?" Mickey asked. My husband Marc nodded. When the game ended, the gift giving for Hannukah began. I called Mickey back for his present, a Nickelodeon video we knew he'd wanted. "Thanks Uncle Marty," he said. He tilted his body against my brother, presenting the top of his head for my brother to kiss.

"Now can I go, Mom?" he asked plaintively. He slid between chairs and disappeared into his room.

"The gifts and the game added a whole new dimension," my cousin Ina said. "It's so much fun to connect as a group."

"What a memorable day," my cousin Carole said. "Lots of love went into this."

I was plating pies when Marc appeared. "I need to talk to you." He whispered. He pulled me into the hall. "I think Mickey had a seizure."

In the midst of so much joyfulness, it was as visceral as a slap.

"What?"

"I went to check on him. He had the Wii Nintendo controller in his hands and asked me, 'What is this?' He had no idea where he was. He asked, 'When are we leaving? When can I go home?' and climbed into bed still wearing his clothes."

I was blindsided.

It has been eleven and a half months since his last seizure. I'd let myself be lulled into complacency. Had dared hope that maybe, just maybe, he was outgrowing them. The seizures had set in with adolescence. I'd hoped hard that as he entered adulthood they'd abate. In fact, they had. He'd gone nearly a year without an episode. Why now? Because we'd lowered his dose of Topamax a month ago? We'd been lowering it incrementally since last winter. Had Mickey finally reached the tipping point? Maybe he hadn't had enough sleep. Enough food. All he'd wanted was pumpkin bread. I'd coaxed him to try turkey, but he'd only taken two bites. Too much sugar? Too many people? He'd been overwhelmed. We'd let down our guard. Forgotten to stay vigilant.

I sat on his bed and stroked his head. He was drowsy. "Did you have a seizure, hon?" I asked.

"I think so..." he said. I kissed his forehead and tucked a quilt around him. "Sleep," I said. "I'll be back soon."

Marc and I returned to the shambles of our kitchen. No one knew that Mickey had had a seizure. Our guests were consumed with their own family theatrics, oblivious to our family drama. Here we were, in the bosom of family, on our favorite holiday of the year. Reluctant to share our sadness and ruin anyone else's evening. Berating ourselves. Feeling so alone.