She Knew Her Allergies Before She Knew Her ABCs: Teaching Self-Advocacy Starts Earlier Than We Think

“Reglan… Zithromax… Phenergan… Versed.”

Believe it or not, those were some of the first words Halle spoke at the age of three.

Her speech was delayed due to poor oral motor tone and mild hearing loss. But slowly, she found her voice. Well… sort of.

Okay, technically her first word beyond the basics was actually “fuck”...but that’s a story for another time. Let’s just say I learned a very important lesson that year about what I could and could not say in front of my child. John was not a happy camper, but Halle and I got a pretty good laugh out of it.

Back to her first sentence of big words.

Halle was in the pre-op room, going through intake with the nurses. I was answering the usual questions while they checked her in. One nurse was filling out Halle’s red medical allergy bracelet as my sweet girl clutched her Hello Kitty Build-A-Bear. Then the nurse turned to Halle, unaware of her speech delay and asked, “And what allergies does your kitty have?”

Without hesitation, Halle replied, loud and matter-of-fact:

“Reglan… Zithromax… Phenergan… Versed.”

Now that I think about it, she sounded a lot like me. Loud and Direct.

By that point, only three years into her life, Halle had already endured numerous surgeries, procedures, hospitalizations, therapy appointments, and doctor visits. I had told her medical history more times than I could count. And every time, I answered the same question about her drug allergies.

What I didn’t realize was that my little girl was absorbing all of it. She knew her history. She knew her allergies.

But no one had ever taken the time to ask her. Sadly, neither had I.

In all honesty, I didn’t even know she could speak that much. But that day taught me something profound: my quiet, observant child had a lot to say. And on that day in 2003, she found her voice.

That moment marked the beginning of Halle’s journey as a self-advocate in the medical world and the beginning of my journey learning when to step back, quiet my own voice, and let hers be heard.

I wasn’t always great at the “shut up” part. Just as Halle would shout, “LANGUAGE, Mom!” when I cursed, she would also gently place her hand over my mouth and say,“Mom, it’s my story… let me share.”

Over the years of raising three kids with disabilities, I’ve learned how layered advocacy truly is knowing when to use my voice for my children, and knowing when my role is to teach them how to use their own.

That’s exactly why Janine and I created a three-part Medical Advocacy series on the Strength Happens podcast:

• Episode 1: Advocacy 101

• Episode 2: Teaching Advocacy

• Episode 3: Advocacy Burnout...coming soon.

  
  

These episodes are filled with the lessons we’ve learned and the wisdom our kids continue to teach us.

🎧 Stream now and join us as we talk about finding your voice, honoring theirs, and learning when to speak… and when to listen.