Advocate is a word that can be a bit intimating for people-for people like me, just a mom, someone who is really not 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 4.5 years after a certain someone came into our lives, I find myself advocating. And it’s really not at all as I pictured it.
4.5 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, and out of our mouths. We didn’t know a lot about “Ds”, as it is more commonly known to us moms and dads. Sure, we knew the occasional 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 in to 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 had been painted 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.
The word has come to mean something different for me now-encompassing more. There are plenty of ways to advocate, I’ve discovered. Something as simple as a tag line in an email. A Facebook post. A bumper sticker. A blog. A conversation. Anything done in a manner of educating another about Down syndrome constitutes Advocacy for me now. Don’t get me wrong, there are plenty of opportunities for us parents to advocate for Ds the way I had always envisioned. There are times to get your Super Advocate hat on - for education issues, for research funding, for orphans halfway around the world, for services, for inclusion settings. The list goes on. There are always letters you can write, emails you can send, phone calls you can make, 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 almost seek them out now. J I 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 his chromosomally-enhanced friends. I keep in mind that these kids, for the most part, cannot be their own voice. They need friends and family to get their point across.
If you are reading this, you know Penny and one of her wonderful sons-Wyatt. Tuck a mental picture of that sweet boy in the back of your brain, especially this month. October is Down syndrome Awareness month. No better time than to get your Advocacy hat on and educate yourself, your family and your friends about our world of Down syndrome. God Bless.
thank you karen, for this beautiful post!