Here is what sometimes happens when I ask Scarlett to choose a book to read. She goes into her room, and returns with my 368-page paperback copy of How to Talk So Kids Will Listen and Listen So Kids Will Talk. “This.”

“Why was that in your room?” I ask.

She shrugs. “It’s mine.”

Then she climbs into my lap and flips pages until we get to the illustrations of parents saying the “wrong” and “right” things to their children. Scarlett particularly enjoys the sections where a parent is nagging a kid about something, like leaving a door open or not feeding the dog. I do the nagging, and then she reads the recommended approach in a singsong voice. “Johnny, the dog.”

I bought the book when she was two, and it had nothing to do with my ALS. I wanted to make sure that as she grew, we continued to have a relationship that was open and candid. I wanted to answer her questions in ways that would encourage her to keep asking them (although the book advises responding to many questions with the line, “What do you think?” and when I try that, Scarlett becomes apoplectic.)

All that said, there are times when I just can’t listen so she’ll talk.

For example, in the mornings, when she climbs into our bed and begins a running commentary on basically everything she can think of. “Mommy, can I tell you something?”

“Mmph,” I mutter, with my arms around her, willing her to miraculously become tired and sleep until 9. I peek out of one eye, and she is staring at me like an owl. It is clear that she is going to behave like someone who just drank a pot of coffee, mainlined a bottle of chocolate syrup, and then won a Red Bull chugging contest.

“Sooo…today for the birthday party, I want to wear all rainbow things. I set out all my clothes, and I need to bring some rainbow decorations…LOOK, A SQUIRREL!”

Thirteen seconds of blissful silence. Then, “I only like girls, and not boys.”

“Is it time for the party yet?”

“Daddyisacrunchycarrot Daddyisacrunchycarrot Daddyisacrunchycarrot…”

“Mommy, can I tell you one more thing?”

This is when I give her the iPad.

In my opinion, 6:30am is never the time to talk. But during the day, when my brain is operational and I’m not struggling (much) to deal with the fallout from another restless night, we have lengthy conversations. Sometimes they are silly, sometimes more serious.

On Saturday evening, we were getting ready to go meet my friend Richard McBride. Richard had driven his truck down from Canada, despite the fact that he is in a wheelchair, and we had plans to get together at a restaurant near his hotel in Fisherman’s Wharf.

Scarlett has only met one other friend of mine with ALS, a man whose voice muscles are weak, and I was preparing her to meet Richard, whose progression and timeline are more like mine. “How did he drive here?” she asked. “Why are some people’s voice muscles weak?” “Does his wheelchair look like yours?”

The proper answer to these questions did not seem to be “What do you think?”

So we talked about ALS a little bit, as we sometimes do, and Rob added a few thoughts about how rare it is. We’re trying to make sure Scarlett knows that the symptoms of ALS don’t happen to everyone. That they won’t happen to her. There’s nothing in my How to Talk book that gets at issues like these.

But of course there are other books and resources out there, and we’re doing ok. Scarlett and I will keep talking. I assume we will keep role-playing scenes from her favorite self-help book. And I will work on not smothering her with a pillow in the early hours of morning.

Share this post on your social platform