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Why Social Media Is Important to This Special Needs Mom

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I’ve been a mom for more than 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 (physical therapy), OT (occupational therapy), EI (early intervention), developmental delays, cognitive delays, birth defects, rare disorders, chromosome disorders, autism umbrella diagnoses, speech therapy and almost every specialist doctor out there. I really wish I’d kept a list of every doctor I’ve visited; 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 all I want to do is share my story in the hope that others will somehow benefit from it. To me it’s about support — something I think special needs parents need more of, and one big, important word: connection.

Being a special needs parent means you often feel alone. Alone because no one really “gets it” and alone because at some point you realize just how different your life is compared to others’. You think, “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 me 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 we seek parents like us. We seek 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 created my Facebook page. I’d already been blogging, but mostly just my family reads my blog. Did I really want to share my life with, potentially, the world? Am I OK 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 when 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 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 parent voices that will propel children into greater futures.

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.

woman holding sign that reads 'welcome to my blog, The Special Reds!'

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

Follow this journey on The Special Reds.

Originally published: December 31, 2015
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