What does it mean to be an advocate for your child and others within the community? It means you’re willing to write your local legislators, equip yourself with knowledge and have meaningful conversations with others from both sides of an issue. Guest blogger Karen Prewitt, Vice Chair of the Exceptional Student Education Advisory Committee, shares her views on advocacy as a parent for children with disabilities. - Ale’ta Turner
Advocate can be defined as “one who speaks or writes in support of another or a cause.”
Advocate is a word that can be a bit intimidating for people — for people like me, “just” a mom, someone who was never really an outgoing person by nature. I never envisioned myself as an advocate. The word always struck a little fear in my heart. It would mean writing letters, picketing, protesting, putting myself out there. But more than 8 years after a certain someone came into our lives, I find myself advocating. And it’s really not at all as I pictured it.
Eight and a half years ago, our son Caleb was born … with Down syndrome. We didn’t know prenatally, but we managed to get over the shock and emotion of it fairly quickly, and got down to business. “What will it mean for him? How will his life be different? What should we expect?” These were all questions that ran through our minds at the time. We didn’t know a lot about Down syndrome. Sure, we knew the occasional grocery store bagger, and maybe a cousin of a friend who had it. But really, what we knew was nothing about how our lives were already on the road to changing.
I dove into the world of Down syndrome — online, in person, any way, any contact, any organization I could find. We soon learned that although the picture wasn’t as dark as the one that had been painted for us, we had a lot of work ahead of us, and so did our son.
One thing it meant, for me personally, would be getting out of my comfort zone on occasion, as a voice for our son. As his advocate. Fortunately or unfortunately, as my husband and I discussed last night, parents with children with disabilities will have to advocate, in some way, shape or fashion. It’s just part of the package that comes with your child. We will face challenges and obstacles — in school settings, in society … sometimes even in our own families.
Advocating has come to mean something different for me now. There are a number of ways to advocate, I’ve discovered. Relatively simple things like a hashtag, a Facebook post, a bumper sticker, a blog and a conversation. Anything done in a manner of educating another about Down syndrome, or disability issues, constitutes advocacy for me now. Don’t get me wrong, there are plenty of opportunities for us parents to advocate for students with Down syndrome the way I had always envisioned. There are times to get your “Super Advocate” hat on — for education issues-local and national, for appropriate services, for inclusion settings. The list goes on. There are always letters you can write, emails you can send, phone calls you can make, and disability days you can attend.
But more and more, I find advocacy has crept into our daily living and is there to stay. The simple act of heading to the grocery store turns into advocacy when people inquire about our son. I never hesitate to answer questions, and figure the more people who know what our lives are like; that they’re really not so different than that of a typical family; the more people will be at ease with our son and others with disabilities.
I would encourage other parents to learn to “be a voice” too. Share your experiences, help to educate others about your child, be an active and engaged partner in your child’s educational experience, look for resources and people who can help. They are there to support you, and your child.
Learn more about the ESE Advisory Committee of Duval County Public Schools.
Vice Chair of the ESE Advisory Committee