On the “Not Proud/Proud” Moments of Disability Parenting

Today, after my husband got Fiona dressed for school, she plopped herself on the living room floor and flipped through a book.

“Time to eat, Fee,” my husband said. He’s the one who usually fries her eggs, and she’s usually eager to eat them. She’s usually signing “eat” before she reaches the dining room table.

But today she shook her head and said, “No.” She kept flipping through her book.

“Fiona,” my husband called from the dining room. “It’s time to eat.” I checked the clock. We had thirty minutes before she had to leave for school.

“No,” she said again, matter-of-factly with a headshake, and kept looking at her book.

I smiled, welling with pride. My pride was equal to that of a parent who watches her kid perform a ballet recital. It was equal to that of a parent who spots her kid sharing a toy, a gesture as rare in a preschooler’s world as a pygmy three-toed sloth. But my daughter hadn’t shared a toy or performed Swan Lake. She’d said no. Easily, quietly, defiantly. No.

And this, friends, is what we call a “Not Proud/Proud Moment” in disability parenting.

Perhaps you know what I’m talking about. Perhaps you’ve had your own Not Proud/Proud moment. Here is another example. You take your two-year-old with gross and fine motor delays to a restaurant. For the first time, he tosses food on the floor. And not just a few, but copious amounts of French fries, grabbed into his fists and then scattered all around his chair. Patrons turn their heads. A woman offers a sympathetic smile. A couple cringes and looks away, vowing never to have kids. You have a choice: play along with their assumptions and tell your child to stop it (Not Proud) or do what is natural, let a broad smile spread across your face, look to your spouse, and say, “Honey! Look! He’s grabbing small objects and then releasing!” (Proud)

In other words: You are simultaneously not proud, because your kid is doing something problematic, dangerous, socially unacceptable, or otherwise bad in some way, and proud, because your kid! Is doing! What kids need to do to learn!

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Snapshot of a crowd cheering energetically. They’re all looking in the same direction. Some have fists in the air. Some are shouting, their hands in mid-clap. One woman looks like she’s in the middle of a lioness roar.

Other instances of Not Proud / Proud moments:

Your kid puts a raisin up her nose. Typical response: Don’t put things up your nose! Disability Parenting Response: Holy shit! You just separated your thumb and index finger into a pincer grasp and used it functionally!

Your kid says “poop” again and again at the dinner table. Typical response: Don’t say poop while people are eating! Disability Parenting Response: Oh my God! You just hit the word “poop” repeatedly on your AAC device because you’re telling me you have to go the bathroom!

Your kid grabs the butt of your velvet-pants-wearing aunt. Typical response: Don’t grab people’s butts! Disability Parenting Response: Holy smokes! You just overcame some sensory processing issues and voluntarily engaged in an uncertain tactile experience! 

Here’s why Fiona’s “no” is a proud and beautiful thing. A few weeks ago, while driving the kids around town, I was listening to Brené Brown’s The Gifts of Imperfect Parenting. Brené said that anyone who parents children of a certain age is accustomed to hearing “No.” I thought of my three-year-old, who constantly defies me. Please finish your dinner. No. Stop sitting on me while I’m trying to do push-ups. No. Stop groping my boobs in public. No. Brené, whose husband is a pediatrician, added that doctors actually want to see a child defiant at this age. Defiance is a sign of a healthy developing self. Kids are built to test boundaries, she said (and it’s a parent’s job to uphold the boundaries). If kids don’t test boundaries, they won’t learn how to draw and maintain their own.

I thought about Fiona. It’s not that she never says “No.” Her preschool teachers sometimes report that a day was laden with refusals. But she is far less defiant than her sister. She’s much more willing to go with the flow. The other day, I asked her a series of yes/no questions. Are you tired? Yeah. Do you want to get your pajamas on? Yeah. Do you love me? Yeah. Am I the best mom in the world? Yeah.

It’s possible that her genuine answer to my questions was indeed Yes. But Brené Brown’s talk heightened my awareness of Fiona’s compliance. So when Fiona decided to start her day in clear defiance, I was: not proud, because we really needed her to eat her breakfast so we could get her out the door, and proud, because my kid was exercising the rights of selfhood that will be paramount to her future.

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Fiona standing and touching hear head. She’s wearing a raspberry sequined beret, a mint green jumpsuit, a magenta sleeveless blouse tied at the waist, and navy converse sneakers.

I love Not Proud / Proud moments in disability parenting. They are baffling and hilarious. They remind me just how contextual is everyone’s experience. They let me straddle two worlds simultaneously—normal and unique—and because those worlds are far enough apart that my straddle is a near-split, I laugh, delighted.

Tell me, what are your “Not Proud/Proud” moments?

 

 

 

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10 thoughts on “On the “Not Proud/Proud” Moments of Disability Parenting

  1. One of my not-proud/proud moments – when Eleanor gets hold of a bottle (shampoo, lotion, whatever) and she unscrews the top and dumps the contents, so much faster than I expect! I am still slow in taking bottles like that away from her because I forget how good she now is at something that for years she was unable to do!

  2. I don’t have a disabled child but the proud / not proud experience can be the same. I have twins. One is “the boss” and the other the has always given in. Recently the boss tried it on and the other finally retaliated! Not proud she punched her sister. Proud she stood up for herself!

  3. Yay Fiona!

    Like Jen, I don’t have a disabled child, but I have definitely had these proud/not proud moments with my 3.5 year old son. The one that most stands out was when he wanted a yogurt pouch. We had put them on a high shelf on the fridge, and when he asked for yet another yogurt pouch we told him no. The next thing we know he’s opened the fridge door, pulled over his step stool, and is getting a yogurt pouch. So proud of him for his problem-solving there, so annoyed that he ignored our no.

    PS: I don’t comment often (at all?) but I love your blog. Your writing is so good. Thank you for letting us into your world.

  4. My child has autism, and generally doesn’t speak to peers, or much at all outside the house. I (secretly) celebrated the day I heard she got in trouble for talking when she wasn’t supposed to.

  5. One time when a nurse went to deep suction Lucia in the emergency room she summoned all of her might and used both her hands to swat her away from getting the suction into her nostrils! I think the nurse was less than pleased but she didn’t understand what a big moment it was! I on the other hand jumped out of my seat screaming, “way to go Lucia!”

  6. When your deaf first grader (who had no language at all at 3 and no speech until after age 4) gets written up on her weekly behavior chart for talking, it’s definitely a not proud/proud moment!

  7. In a very nice restaurant where the whole family was celebrating my mother’s birthday, Katherine walked out of the ladies room and announced to the world that she had pee peed in the potty. Fortunately she was using sign language. I was so proud that she had not wet her pants, this potty training thing being new, and that she was communicating. I was also pleased that she was proud of herself.

  8. Kind of gross one here. We’re toilet training. My son has close to zero awareness that anything is about to happen/is happening/has happened. (Timed training in an attempt to help with awareness). Recently he’s started reaching into his nappy, pulling out the poo and playing with it. Really mixed “yay, he’s noticed something has happened!!” vs “OMG stop that, argh!!!” emotions going on here!! With bonus “isn’t it wonderful that he’s overcoming some of his tactile sensory issues” vs “NOT ON THE WALL OMG!!!” emotions.

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