Thursday, August 13, 2015

Parenting in the Information Age: Am I Oversharing?

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

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.


  1. I love following your Instagram for exactly the reasons you intended. It gives me hope for my daughter's shirt term and long term future, has a sense of humor about our children's differences, reminds me to be positive and enjoy it all. I also love to see therapies and interventions that work for Josie. I am grateful that you are putting yourself out there to give those glimpses into your life. A generation ago I would have been all on my own, but now I have access to a world of information including perspectives of other mothers who have shared on social media. Thank you.

  2. I always think you portray your all's life experiences here in a positive light. I am sure there are blogs out there that spend more time emphasizing the negative. There has to be a good balance. I know there are times on my blog where I have been overly stressed or discouraged with the craziness of raising 4 kids and have vented. I hope I didn't go too far!

  3. I think you do a great job of being responsible about sharing. You keep information about your kid's full names and location private and you don't share embarrassing information, at least from what I would consider embarrassing. What you share comes from a point of informing and teaching and not venting. I never get the impression from you that any of your kids are anywhere close to being burdensome, they fill your life with joy! I agree with Carly's points of not sharing very personal details about toilet training or bed wetting or things about disabilities which may be particularly embarrassing or sensitive, and I think if we all just ask ourselves the questions you mentioned before posting something, no matter if our child has a disability or not, we'll be sharing responsibly.

  4. I am one of the parents that googled "Down syndrome blog" when I was totally overwhelmed by a prenatal Down syndrome diagnosis. There are only a few blogs that I still follow, and yours is one of them. I think you do a great job of realistically sharing, with a sense of humor. I don't think you are humiliating your kids in any way, and you keep your personal info private. So thanks for doing what you're doing

  5. Girl do u! Don't worry about that article. You know ur motives & u don't owe us an explanation. We read & see urssincerity on each blog post u share! I am one of those people who do not know anyone with down syndrome & thanks to u now I feel like I know alot!

  6. When we received the prenatal diagnosis, you - by sharing your life story and life choices - comforted and inspired

  7. Sorry - I was cut off - I just wanted to thank you again for being there when we were in that dark prenatal place. And I enjoy your blog so much!

  8. To be honest I was a smart child and not very accepting of kids with disabilities. My cousin was diagnosed with autism when I was a teenager (she was 3) and my views started to change. Seeing blogs like yours really is helpful to me. I am a teacher and have not had any disabilities yet in my mainstream classroom (starting my 6th year) but I hope to create an inclusive enviro

  9. Environment when I undoubtedly do one day! I think your blog does spread awareness. (Sorry I got cut off in the first comment!)

  10. I just want to say, thank you! I work for an agency that provides services for individuals with developmental disabilities through a day program, workshop, home and community involvement and also through residential housing and a life sharing program. You are such an inspiration to me and make me want to give my all every single day to the individuals that utilize our programs. We have individuals who utilize our services from their 80's on down to young adults. You can really see how the younger generation tend to thrive, learn new skills faster, and are generally happy in their life! My thought is that it is mainly because they have family that are still very much involved in their lives! The older generation never had that and if they did have family interaction it was pretty limited. Often times the parents were pretty much told they had no other choice than to institutionalize their children and were basically given no hope that their child could lead a fulfilling life. By writing this blog and sharing your experiences you are showing people how rewarding it is to raise a child, with a "disability" or not. All children need love. All adults need love. I really do admire you. You are a great mom to all of your children!