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!
Two of my favourite loving and inspirational women joining forces in one fabulous blog! I love it, and I love you both, Penny & Karen - sending hugs always from whichever side of the world I happen to be on xxxx
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