Listening, a step to finding my true parent advocacy voice

As a parent with a kiddo who currently cannot speak for herself, (we will get there 👊 #IntegrateAAC), I have had many occasions where I have gotten fired up in an effort to protect or speak up for my child. I have tried waiting patiently. That does not mean I have always been effective or clear, or had a good attitude. Recently, I have been thinking about those moments I am not proud of.

Image for post

While practicing mindfulness, I caught myself asking “Am I doing enough?”, it crossed my mind that maybe there IS one area I can be improving.

This month, I have focused on being more present and in that, I have been thinking more about listening. (I have shared many quick thoughts on “Being present” in my Instagram stories.) As part of listening more, I am aware this applies even in the most difficult moments. If there is a heated topic, or a painful emotion surfacing, what can I do first to listen before speaking? Then, when I do speak up it will be with purpose and clear; my true voice.

So for parents who have been on this journey for a while, learning their child’s development and educational needs, while probably also navigating the complexities of multiple therapies and doctor appointments, these thoughts are for you. They are here for us to discuss, if you are in a place like I am, looking to grow myself to better advocate for my child.

Image for post

Listening comes in many forms, there are many experts who write on this topic. You can find some good points from Elle Kaplan and Dr. William Lane right here on Medium. So why read mine?

I’ve been on this mom advocacy journey for almost 9 years, if you start from the first seizure and the first doctor’s conversation. I’ve been a part of a family advisory council at our children’s hospital for the last six, after we settled into our journey and felt we had something to give back. I’ve been on parent panels and presented to professionals at The Institute for Patient and Family Centered Care international conference.

I am also an experienced business communicator who believes in building effective relationships where everyone benefits. Effective relationships look different in the corporate world compared to personal relationships. However, neither of those fit this space where we live as special needs parents.  Which leaves this really unique, gaping hole for those of us who have to be very personal, but on a professional playing field — with teachers and therapists and doctors and child life specialists. All these people have letters after their names, they are experts in their fields. Who are we to question them? It’s a common thought we face as parents. But we are experts in our kiddos. And that is why our voice matters, because our children’s voices matter.

Image for post
Instagram quote from

If that feels familiar, then I have distilled my current state of mind here into three simple acts that can help with those tough moments. I really do want to hear how others have managed through difficult conversations.

  1. Listening is not just with our eyes, so what am I seeing in the moment? Am I rushing to judgment? Am I seeing the whole picture? Am I seeing any stress signs from my child? Is she telling me in her way that she needs my help?
  2. Listening by asking questions first — to the other party — maybe a healthcare provider or maybe a child — asking what is the problem, what are the concerns? And then truly hearing them completely, practicing active listening, before responding.
  3. And maybe the hardest thing to face, listening to myself. This could be in a split second, but most likely it may require at least a few minutes of being still, and focusing to get to the heart of the moment.

Now this self awareness goes both ways. It can push us to speak up more, and it can also give us the strength to pause.

Many moms I have connected with believe in the mommy gut. I have trusted it many times and it has told me something is wrong, speak up! It was the first to sense she was hemorrhaging after brain surgery, and it’s been right more than wrong. And yet, it can sometimes get the better of my emotions.

Image for post

Listening to myself should also mean figuring out what I really want or need in the moment. If I speak too soon, will I confuse things and not have an effective conversation? I have been guilty of this and I have witnessed other parents speak up only to fumble through their words because the emotions are clouding the clarity they feel in their hearts. Luckily, this is a journey and we get to learn and improve as we go.

Communicating effectively is hard. Being an effective communicator while under heavy stress and/or overwhelmed by a huge mess of questions and concerns, just makes it that much harder to find clarity. I really believe this is a key step in parent advocacy — find your true voice by listening first.


Find me on Instagram at

Find me in Twitter at redcarrie