Category Archives: Parenting

How to Talk

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.) Read More>

|Categories: Life, Parenting, Relationships | Tags: , , | Permalink

Speed4Jenny

Today I’m introducing a new Face of ALS to the site. Jenny Smolinski was diagnosed with ALS in 2013 at the age of 35. I met Jenny online last year, and can identify with her in many ways. We are close in age, and we both have young daughters. Our ALS had a similar onset. We’re from the Midwest. We enjoy avoiding our ALS clinics. There’s probably more, but I’ll stop there, and move back to the more relevant data points.

Jenny and I also share a fear and sadness of leaving behind the kids who still need us. Her daughters are five and two. ALS with young kids is terrifying, but it can also be truly heartening. Our little girls don’t care that we’re in wheelchairs. Scarlett even uses mine to impress people. I took her to a new gymnastics place yesterday, and she made sure all the other kids could see her as she hopped up on my lap and we cruised out the door after class. When the ramp folded out of the van, two girls from her class gasped. “Cool!” one of them exclaimed. Scarlett preened.

I hear that’s not *always* the reaction from the older kids. Read More>

|Categories: Faces, Parenting | Tags: , , | Permalink

There Will Be Blog

Scarlett is home sick today, so I won’t have time to blog intelligently. That is why I decided that Scarlett is going to be today’s guest blogger. But when I said that to her, she screamed NO at the top of her lungs and ran into the garage. So this might take some time.

My plan today was to blog about choices: why it’s good to have them, how we make them, how they empower us. I came up with this idea in the middle of the night when I found myself facing the decision of whether to ignore the discomfort in my legs or wake Rob up to roll me on my side. Lucky for me, after a few minutes of weighing the pros and cons of either choice, I heard Scarlett barreling towards our room, coughing and snorting like a troll with emphysema.

Rob took her back to bed, and when he returned, I casually asked him to flip me over. No biggie. We had about an hour more of silence before the little beast returned. She was taken away again, but it was hard for me to get back to sleep. When she finally showed up at a decent hour, everyone was exhausted, so we just laid there and she coughed in my face for a while. Read More>

|Categories: Life, Parenting, Relationships, Venting | Tags: , , , | Permalink