My Child’s Biggest Advocate

When you have children, you are their advocate. When you have a child with special needs, the advocating can be even more prominent. Whether you’re fighting for their education, trying to secure the additional help they may need, or cheering them on in every endeavor — with peers and friends — a parent’s work advocating does not end. As a parent, you want to make sure your child is treated fairly, that their extracurriculars help them be successful, and if needed, that you receive answers to the medical questions you have about their health.

As a parent, you fight for your child.

The last couple years have been challenging. In the fall of 2022, our son suffered what seem to have been back-to-back seizures at the doctor’s office. The doctor’s office called 911 and the staff was amazing, and quickly stepped in to help and to make sure my other children were away from the scary scene.

This event started the biggest fight I have faced for my son. We were sent to a local neurologist and we were misdiagnosed. This doctor had his mind made up before even seeing my child and before doing any testing. He undid years of progress we had made with my son in one visit. You see, we have taught my son since the day he was diagnosed with autism (and a slew of other related diagnoses), that he was fearfully and wonderfully made. He was made special and his brain just worked differently. If asked before 2022 about his autism, he would proudly say, “My brain just works different, and that’s okay!” But after this visit in 2022, where a doctor spoke of my son (who was in the room) as a “problem” and used phrases like “with all his issues” or “with his problems” and even “with the way he is” or “in a normal child… but not in him,” the doctor left my then six-year-old child in tears and asking, “What is wrong with me? Why am I this way? Why can’t I be normal?” The love and care we had poured into raising our son to understand that autism wasn’t a curse, but a beautiful thing that made his brain special, was crushed in the five minutes we were with this doctor.

As we left that doctor’s office that day, I made my son a promise: we would NEVER see that doctor again.

At that appointment, I was made to feel dumb and worse, I was made to doubt my gut feeling that something wasn’t right with my son. Because of this, we have gone a year and a half believing that what happened was not a seizure and all the spells since were not either. But everything changed on February 22 when my son had another episode. This time, he was at home, under no stress or anxiety, playing with a cousin. He collapsed shaking, he stopped breathing, and we knew something was wrong. The episode lasted 30-45 seconds; it was pure terror. We talked to my son’s pediatrician and she wanted to send him back to the same neurologist we had seen. I felt broken. We talked about the visit we had previously had with the neurologist, and she tried to get us in with a different doctor, but their policy wouldn’t allow for that, so we saw a nurse practitioner. The nurse wanted tests done but only if we would see the original doctor, but I wasn’t willing to do that because of the promise I had made to my son. So we spoke with our pediatrician and she found another neurologist who saw us very quickly.

It’s been a whirlwind since then and though we still have a ways to go, this doctor listened, asked questions, was compassionate, and talked to and about my son as a human being rather than someone who is less than. Thankfully, my son doesn’t fear seeing this doctor. This neurologist told us that my son was misdiagnosed in 2022.

My son still makes sure we will not be seeing the “mean doctor” any time we go to any doctor’s office. I still could kick myself for not saying more in that initial visit, but I was so taken aback that a pediatric doctor would conduct a visit the way he did. We are still healing the wound that a doctor left in a little boy’s heart, but one thing I know for sure is that the situation we found ourselves in has made me my child’s biggest advocate to this day.

Do not be afraid to stand up for your child, because if you don’t, who will?