I know I promised to write about the National Down Syndrome Conference and I have every intention to do so but a topic has surfaced in our special needs blog/social media community and I feel compelled to address it.
In this life, many people have to search long and hard to find their calling. However, I've never had any doubt about my calling: I know I was put on this earth to advocate for individuals with Down syndrome. The blog and Instagram(click HERE) provide me with an incredible forum to do it simply by sharing our story.
Then, a fellow blogger and dear friend sent me a link to this article (CLICK HERE).
I was forced to stop and question my involvement in the blogosphere/social media realm and reassess whether I'm doing the right thing; is it worth it?
Carly Findlay, author of the article, is an adult living with a rare skin disorder called ichthyosis. In her article, it talks about how it makes her uncomfortable when parents "overshare" about their child's disability via social media and the Internet. She uses the example of when parents share embarrassing details of their child's condition and vent about the burdensome aspects of caring for this child. She questions how that will make the child feel. She wonders if she was a burden to her own parents.
Ms. Findlay makes some very valid points; but I don't think her message is exclusive to people parenting a child with a disability. Her message is relevant to all parenting in the Information Age. Anything you share on the Internet may someday be accessed by your child. Before posting, stop and consider how this will make your child feel. Is this the type of innocent embarrassing story that all moms happily retell over and over about their children? Will it be met with a groan or an eye roll from your child or is it something that will make your child question his or her worth as a human being? Will it make your child feel less loved or wanted?
While Carly Findlay brings up some truly thought-provoking topics related to blogging and sharing personal information, it is my hope that special needs families will continue sharing their stories. Here's why:
Prejudice is based in ignorance and an overall lack of exposure. The only way to advance society's perception of individuals with special needs is to allow people to meet and learn about individuals with special needs. Once the experience is there, comfort levels rise and negative stereotypes are replaced with a genuine appreciation for the individual and the gifts he/she possesses.
The Internet, with all of its pitfalls, is an incredible tool to help disseminate information quickly. You may not have had the good fortune to grow up next door to someone with Down syndrome but you can tune into this blog and gain a heartfelt appreciation for Leanne's kindness, humor, and capacity to love. Your child may not have a classmate with Down syndrome but you can show him pictures and videos of Josie and he can gain an appreciation for her as a fellow 5 year-old who has strengths, weaknesses, perseverance, and lots of attitude.
And a pregnant woman may be patrolling the internet after having just received a prenatal Down syndrome diagnosis. She may wonder what impact the diagnosis will have on her other children; on her family. Amidst the pages and pages of sterile, clinical information, she stumbles upon CCE. And she sees a female who grew up with a sister with Down syndrome; a female who was so positively influenced by and grateful for that experience that she and her husband started their family by adopting a baby with Down syndrome. And five years later, here they are - doing all of the things that other families do; living life and loving one another.
I know social media and the Internet can be a powerful forum to truly shape perceptions about individuals with special needs because I've received numerous comments and emails over the years that have reiterated this point over and over. By simply living our lives and posting occasional photos and sharing our story, we can encourage new parents, unite a special needs community, and promote inclusion and acceptance by welcoming everyone to come discover that we really are "more alike than different."
I hate when I get too verbose but consider this one last point...
In the last two generations, parents of children with Down syndrome (and other special needs) secured the following advances for their children:
1. Individuals with Down syndrome went from being institutionalized to being brought home and raised with their families
2. Individuals with Down syndrome were given access to an education
Now it's our turn. What will we do? Push for access to education in an inclusive environment alongside typically developing peers? Encourage our kids to pursue higher education at one of the many colleges offering programs for individuals with special needs? Capitolize on various career opportunities for individuals with special needs? Dance at our children's wedding receptions?
I invite other special needs parents to join me in sharing your stories. Let's join forces and advocate for our kids. Let's educate everyone on how enriching life can be when we embrace the diversity of the human condition. Let's do it compassionately and respectfully.
And maybe someday I will "hand over the keys" of this blog to Josie and she can pick up where I left off; sharing her own story. And I'll be proud of the content I contributed and the foundation I built.