Speaking up is an empowering aspect of life with angioedema
Here's how we found a clever way to teach this important advocacy skill
“I’m a winner, and I’m special, and Jones don’t take no stuff. No stuff!”
“Say it again!” I yelled rhythmically to our 5-year-old as I drove him to school.
“I’m a winner,” he repeated, “I’m special, and Jones don’t take no stuff. No stuff!”
After discovering that our oldest son, nicknamed Bubby, had become the target of the class bully at his elementary school (a fellow kindergartener who was an inch taller than him), we spent several days trying to cheer him up. Although his tormentor had never hit him, her surprisingly vicious verbal insults did nothing for our son’s self-esteem.
Although his teacher would always reprimand the girl, the young lady still got in verbal jabs during recess, in the lunchroom, and even when Bubby patiently waited for dismissal. He ignored her every time, which weirdly worsened the situation.
My husband, Paul, immediately discouraged my solutions: creating a list of elementary-appropriate insults for Bubby to memorize, or showing up at the school to take on the little tyrant myself.
“We don’t want to teach him to insult kids, and we don’t need you causing a scene in a kindergarten class,” he said, chuckling. “We just need to build his confidence so he speaks up for himself when we’re not around.”
Sure enough, with some brainstorming, the catchy “Jones Chant” was born. Sure, it wasn’t grammatically correct, but it worked. Every day for the rest of the month, Bubby and I would rhythmically chant on the way to school. Soon, not-so-great days at school turned into amazing days, and according to the teacher, our son was one of the few students who’d speak up for himself and defend other students.
I didn’t realize these sessions to build self-esteem would benefit us many years later.
Supporting self-advocacy
When our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE) in 2021, one of the hardest things we faced was getting her to speak up for herself. Often, by the time she did say something about recurring symptoms, abdominal pain, or pain in her face or lips, she was past the point where a single dose of Berinert would keep her out of the hospital.
And if we did get to the hospital, I’d have to prod her to tell her incredible nurses and doctors how she felt, what she needed, or if she was feeling better. Because trips to the emergency room and hospital stays were already overwhelming, pushing a fifth grader to express herself only added to the stress.
“What if they don’t listen to me?” Ladybug asked me during one of her hospital stays.
“They’ll listen to you,” I replied. “That’s what they’re here to do.”
“Why?” she asked me.
For a moment, I thought about telling her that medical staff members took an oath to help people. I even entertained the idea of reminding her that they’d listen because they’d have me to deal with if they didn’t. Instead, I settled on a tried and true method.
“They’ll listen to you because you’re a winner and you’re special,” I finally said.
The room was quiet before I heard her whisper, “And Jones don’t take no stuff.”
Later, when a nurse came in to administer some IV medication that was known to sting, Ladybug promptly asked her if she’d diluted it enough. The nurse answered in the affirmative, and we finally saw a change in how Ladybug treated her own care.
After scores of hospital stays, Ladybug can confidently discuss her pain levels, advocate for her medication, and somehow get staff members to paint and play with Play-Doh and card games.
As long as we’re able, my husband and I will remain at her side while she’s on this HAE journey. But one day when we’re not around, I’m confident she’ll be able to navigate her health journey because she’s equipped with the knowledge and experience … and because “Jones don’t take no stuff.”
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to angioedema.
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