Before You Tag a Special Needs Parent on Facebook...


It’s been said that we are living in the times that history books will label “The Offended Years.” Everyone is offended by something, everyone is either for being politically correct or so tired of being politically correct that they err on the side of being rude.

I don’t agree. I think these are the years  we are finally bold enough to have uncomfortable conversations and not afraid to share what is hurting us and others… and asking for answers. That’s healthy. You can’t control how people feel, only your reaction to it. So no, I don’t believe in being politically correct, but I do believe in being thoughtful, kind and objective. Not everyone will see things the way I see them, and there is a special kind of beauty in being able to step outside of yourself and empathize with others.

I prefaced with this because I want you to understand what I’m about to say has nothing to do with being offended or anyone being right or wrong. I just want us to all be a little more thoughtful in this one specific space.

That space is…. tagging parents of children with special needs in the latest “feel good” piece that reminds you of them or their child.

I know! I know what you’re thinking. It all comes from a good place. Those videos and news articles just make your heart soar and you need to share that with your friend, and we appreciate it. We do. Every time I’m tagged in a post about a sweet girl or boy who has Down syndrome, I seriously think “I love that they’re thinking about us.” It makes my heart happy to know I have friends who care so much about our little family and especially about my son. I wouldn’t trade that for anything. I hope you know that.

But.

Rarely do I actually read the articles or watch the video. Some days I might. But most days I can’t. The proud smile  you get from watching that video? Even three years later, there are still days I struggle with being in Holland. Many days are still laced with fear of the unknown. It may be because my son is younger. Perhaps this will change as he gets older. I don’t know… this is my first time doing this. So instead, I save them and say I’ll watch them another day. Another day still hasn’t arrived.

When you watch the video and see all the abilities, accomplishments and how cool it is that someone asked the most precious kid to prom, that’s not all I see. I do see the abilities, accomplishments and am proud of how inclusion is becoming mainstream. But I also see the things my child is not doing yet… my chest tightens as I wonder if those same accomplishments will be my son’s. I watch with hope that one day he will be attending his prom, but not as a sort of charity case who needs to be filmed and made viral to make everyone feel like the person going with him is an incredible human being simply for accepting his invitation.

There are always tears.

Hot stinging tears, and most times lots of smiles.

And most time lots of fears and heartache accompanying the tears and smiles.

Yes. I am describing what essentially is a hot mess, and that’s why I don’t look at them.

Every day I wake up and give my first lucid moments to God. Three years later, one part of that prayer remains the same. I do not want to focus on the challenges of Down syndrome. I know it’s silly. I talk about Down syndrome a lot, and share those same videos from time to time. I’m in groups specific to the Down syndrome community, and I interact in them. The difference is, I get to tiptoe into those moments when I choose.

It just feels different when I choose to visit the gals in my DSDN Rockin’ MomsCADS and DSAMT groups. It’s different when I’m blowing bubbles with my son, he runs to catch them and I hear a soft ding so I check my phone to see I’ve been tagged five times for the latest cutest video of a child with Down syndrome. I’m pulled from our own moment. I know, I should probably stay off social media. But, when you have a husband on the other side of the world and run a business that relies on social media for connections, that’s not an option.

I might sound particularly whiny to some and harsh to others. Who am I to not be reminded of Down syndrome’s challenges — that’s a part of our life! True. I love everything (well, let’s be honest… most things; he’s still 3, and you know how particularly trying that age can be) about who my son is. If God came to me and told me I could have him without Down syndrome, I would give a resounding no. It is who he is, he is what I love, and his diagnosis has taught us extraordinary lessons already.

Believe me, I absolutely know this isn’t a “normal” reaction. It’s possible this reaction is just mine… but I’d be willing to bet it’s not, especially for mama’s still adjusting.

Please don’t take this as a jab and say, “I’m never going to tag her in anything else, ever again.” There’s just one thing I want you to do before tagging a friend or family member. Look at their last few posts on their timeline. Have they shared any posts about their child’s disability that day? If not… I’d suggest saving the post for when you know they’re in that frame of mind. Or send it to them in a message with, “For when you need to see all the amazing things your little one is going to accomplish.”

We’ll know to look at it when our heart is ready.

Follow this journey here.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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