Wednesday, December 30, 2015

Why Special Needs Parents Love Social Media

I've been a mom for over 12 years now. Having three uniquely diagnosed children means my brain is a jumble of all things related to special needs parenting: Haberman bottles, IEPs, FAPE, LRE, PT, OT, EI, developmental delays, cognitive delays, birth defects, rare disorders, chromosome disorders, autism umbrella diagnoses, speech therapy, and almost every specialist doctor out there between the three. I really wish I'd been keeping a list of every doctor I've visited over the last 12 years--I think I would surprise even myself. My children have certainly kept me busy, and now that things are slowing down a bit, I find that all I want to do is share my story in the hope that others will somehow benefit. It's about support, something I think special needs parents need more of, and one big, important word to me: CONNECTION.

Being a special needs parent means you often feel alone. Alone because no one really gets what you are going through. Alone because at some point you realize just how different your life really is compared to others. Who can I REALLY talk to about my life? Who would even begin to understand? Who would know what all those special needs terms mean without having to explain them? I have a handful of people like this in my real life, but I think this is why many parents like me blog, because this is what we seek: parents like us. CONNECTION. And with the magic of social media, we can reach others, in a big way, and feel connection like never before.

Honestly, though, I was never more scared than when I published my Facebook page. I had already been blogging, but mostly family read my blog. Did I really want to share my life with, potentially, the world? Am I okay with many people reading my story? It took a giant leap of faith for me to begin my page, and there are still some days that I would rather hide from the world. But I have to keep telling myself that publicly sharing is how moms like me make changes for the special needs community. We are making a better future for our children by sharing the information we have, by sharing stories about our children. We are helping to end the stigma related to disabilities because of our openness. And being open leads to connections with parents that I never would have met otherwise.

My little network of "online friends" from my page and from other pages continues to grow, and I love it. I love that I can talk to people who get it. I don't feel alone anymore. I feel confident in my story, because I know people who get it, too. These connections are what keep me going, day after day, in sharing my life as a special needs mom. And this is why I will continue to write about my children, because I am adding to a large volume of voices that will propel all special needs children into greater futures and potentials. I am not doing it to become famous. I am doing it to help someone else not feel alone in their journey. Connection is what it's all about. Thank goodness for social media, because my support group has never been larger.

And by the way, if you know what all those terms are in the first paragraph, you are already my friend.


  1. So glad you feel connected to others. We all need that in some way or another. How wonderfully wise and proactive of you to have reached out and created it, not just for yourself, but for others as well. I thought your poetry was beautiful. Love and miss you!

    1. Thanks so much, Lindsey! You are so kind. Connection is everything in this motherhood journey.