Advocating for My Child Who is Blind

I’m not a very confrontational person. Before I directly accuse somebody of something, or announce a grievance, I try to consider all sides. I don’t like jumping to conclusions, and I generally think people act with good intentions.

Over the nine plus years Eddie has been in my life, there have been many times when I needed to stand up for him because he couldn’t do it for himself. Sometimes, I rose to the occasion. Other times, I’ll admit, I decided to play things safe. Safe as in not ruffling feathers…not being a crazy mom…and not being “that parent” which we all try to avoid.

I’ve sat in meetings at school, and wanted to cry, or shout, or both. I’ve sat in doctor’s offices and wanted to ask another question, and another, and even more, but chose not to because I felt like I was asking too much. Most of the time, when I silently vote to keep calm waters, I regret it.

Because I know that I can be meek at times when I shouldn’t be, I often have advocates (friends or family) with me in meetings…and well-prepare myself for the meetings I attend alone. People who know me, might not realize that I’m not always a strong advocate for my son…but, honestly, it’s exhausting being that person all the time. That part of me…the “strong advocate” tends to save herself for the days it really counts.

When those days come, it feels really great to be strong. Last week, I took Eddie for some routine lab work, which included a blood-draw. The technicians tried twice to find a vein, and were unsuccessful. In the past, I’ve let techs try again, or let them find somebody else that may have more training with a kid like mine.

This time, in my gut, I knew that we were done with that hospital on that day. I simply wasn’t going to let them poke Eddie again; because I wasn’t confident they could get it done with another try. So, I stood up, took Eddie’s hand, asked for his lab slip back, and told them we were going somewhere else.

I wasn’t rude…or sharp…or even sassy. I was simply decisive, and it felt great. Standing up for him always feels good, and it makes me want to do it more often. I immediately thought about some wrongs I wanted to right, and when it comes to Eddie, there is always some kind of battle to be won.

Self-advocacy is extremely important for kids who are blind. However, parents have to learn how to be advocates, too. It isn’t always easy, and it makes me uncomfortable at times. I don’t want to hurt anybody’s feelings, but that can’t stop me from being there for Eddie. If I ask, “What is right for Eddie?” and that answer requires action…I have to be strong enough to do what needs to be done.