Advocating for your child doesn’t always look like big, loud moments. Sometimes, it looks like sitting on hold… again. Sending the same paperwork… again. Explaining your child’s needs to yet another person… again. And doing it all with patience you didn’t know you had.
For the past month, I’ve been deep in what feels like the world’s most frustrating game of telephone, trying to get Kay approved for pull-ups through insurance. What sounds like a simple, straightforward need somehow turned into multiple calls every single week between her pediatrician’s office, a medical equipment company, and insurance.
To her pediatrician’s credit, they’ve been amazing, sending over everything that’s been needed, more than once. But somewhere along the line, things kept falling apart. After denial after denial, her doctor’s office realized that the medical equipment company we were using didn’t seem to be forwarding all of the documentation to insurance. Which, of course, explains why we kept hitting a wall.
So now, we start again, with a new medical equipment company and a new prior authorization submitted. And we’re hopeful. Cautiously hopeful.
What’s been especially frustrating in this process is being told that Down syndrome alone does not qualify a child for pull-ups through insurance. And while I understand that policies exist, I also know families whose children with Down syndrome do receive coverage. So, like any parent would, I advocated. I explained. I pushed back—respectfully, but firmly.
Because Kay is not just a checkbox on a form. Kay has Down syndrome, Type 1 diabetes, and autism. And all of those things matter.
Children with Down syndrome often take longer to potty train, and there are real reasons for that. Lower muscle tone can make it harder to recognize and control the muscles needed for toileting. There can also be developmental delays that impact communication and body awareness. It’s not about lack of effort or consistency, it’s simply that their timeline looks different.
And I do see Kay learning. I see the progress. I see the understanding starting to click. But with that progress can come regressions, too. That’s part of the process.
Now layer Type 1 diabetes on top of that.
Blood sugar fluctuations can increase urination, make routines unpredictable, and add another level of urgency and complexity to something that is already a learning process. It’s not just “go to the bathroom”—it’s managing a whole body that doesn’t always cooperate the way you want it to.
And yet, despite all of that, insurance guidelines would approve a quantity that equals about three pull-ups a day. Three.
I had to politely point out that most people use the bathroom more than three times a day. So expecting that to be sufficient for a child who is still learning, and has additional medical needs, just doesn’t make sense. If we needed more (which we absolutely do), we were told we’d need a prior authorization. So that’s what we did.
And that’s where things fell apart the first time.
And now, here we are again. New company. New authorization. Same hope.
No one plans to still be buying pull-ups at age five. But here we are. And if there’s anything I’ve learned from being Kay’s mom, it’s this: everything happens on her time, and that’s okay.
But wow… they really make you work for any kind of support.
Advocacy isn’t always loud. It’s not always a big moment or a big win. Sometimes it’s persistence. Sometimes it’s repeating yourself ten different ways until someone finally listens. Sometimes it’s trusting your gut when something doesn’t feel right and starting over when you have to.
And sometimes, it’s just refusing to give up on something as “simple” as pull-ups—because you know your child deserves the support they need.
Even in the small things. Especially in the small things.