Advocate

I was probably a little naïve. When we received the diagnosis for Juliana there was so much information flying at us all at once. There was this test, that test, blood work, specialists to see, and therapists to schedule. It was overwhelming. Let me say that again. It was overwhelming. That is the magnitude of what I felt. This is where naivety comes into play.

I thought we could count on all these people. And to a certain extent, we could. But I don’t know if I’ve ever had to push something so hard in my life. We have had some good health and care providers and some that were not so good for us. I’m not here to point a finger at any individual.

That is not what I’m after. But what it took me some time to realize is that as her parents, we have to be Juliana’s voice all the time. We have to be her advocate. No one knows my daughter the way I do. No one will care for or love her the way I will. And while I respect and depend on the professionals to provide care and knowledge, there is a level of responsibility that I take on as her parent.

We have had incidents with Juliana in which I had to push, push, push the doctors to do more. The first thought was to find someone new and sometimes that course of action was necessary. But when your child has a history with a provider, you struggle with moving on.

In the beginning, I felt like “Well, they’re the professionals so they must be right.” Then, I started to follow my gut. When things didn’t feel or sound right that’s when I learned to push; not in a bossy, mean, mom kind of way. But in a Nooooo, that’s not quite right kinda way. How did this go over? The results have varied.

One doctor was very appeasing and said something like “I don’t think that’s it, but we’ll try it anyway.” By the way, the “it” that he was reluctant to change was indeed the problem. Go figure.

The interaction with therapists has been more challenging because they work one on one with Juliana and know her so well. But, as her mom, I know her better, and we have to get to a place where we work together. You listen to me, I listen to you and we get the best outcome for Juliana. What is so hard about that? Because I have to keep Juliana’s best interest in mind, I just won’t tolerate incompetence, bossiness, or providers who can’t move out of the way of their own ego.

There! I got that off my chest. It’s not always easy, especially when you like the provider, but I’m just at the point where nice is out the window and I have to look out for my daughter. So, as uncomfortable as it may have been, sometimes we’ve just cut the cord and moved on.

I’ve talked to other special needs parents and found that they are experiencing some of the same things. I was glad to learn that it wasn’t just me. How has it been for you so far? What are you experiencing wearing your advocate’s hat?