This week, Kay had her six-month ENT checkup. Normally, these visits are pretty straightforward: she sees her audiologist first, then the ENT reviews any updates and follows up. Since both offices share the same suite, it is usually a smooth process. But this time, things did not go as planned.
Kay’s insurance had not approved her audiology appointment in time, so that visit had to be rescheduled. The ENT appointment, however, was confirmed, so we went ahead and made the early morning trip across town with Kay missing school and Maeve, her diabetic alert dog, faithfully by her side.
When we arrived to check in, the receptionist immediately asked if Kay had already seen the audiologist. I explained the situation, noting that the office itself had called me just the day before to cancel audiology but confirm ENT. Still, she looked uncertain and said she would have to check with the doctor to decide whether Kay should even be seen.
In moments like this, I am reminded of how easy it is for kids like Kay to slip through the cracks. The old me might have politely stepped aside and let the office decide if our time mattered. But that is not who I am anymore. Kay deserves better. She had already missed school, we had fought traffic to get there, and most importantly her health and care are not optional. I calmly but firmly told the front desk that this appointment needed to happen, even if it was quick. Thankfully, the ENT agreed to see her.
As a special needs mom, I have had to grow comfortable with moments of advocacy like this. Honestly, it is exhausting sometimes. There are days I wonder if I come across too strong. But the truth is, when you have been fighting for your child’s needs since before they were even born, you learn that your voice is often the only one that makes sure they do not get brushed aside.
Kay has Down Syndrome, Type 1 Diabetes, and was recently diagnosed with Autism. Each diagnosis brings its own unique set of challenges. But what often weighs heavier than the diagnoses themselves is the system. The red tape, the delays, the dismissals, the moments when people act like what she needs does not matter. That is when my role becomes clear: I am her advocate until she can advocate for herself. And even then, I will still be right there beside her.
The visit itself turned out to be quick and uneventful, which is fine by me. Maeve was a rockstar, calmly lying at our feet in a crowded waiting room and quietly waiting in the exam room too. She is settling beautifully into her role, learning to keep up with Kay’s busy life while making sure her girl is safe.
I share this not just as an update but as a reminder. If you are parenting a child with special needs, your voice matters. It is not overreacting to insist on proper care. It is not difficult to expect professionals to follow through. It is advocacy, and it makes a difference.
So here is to the quick visits, the stubborn moments, the wins that do not always look like wins but are victories nonetheless. And here is to Kay and Maeve, showing me every day that persistence pays off.