A couple of days ago my oldest daughter said, “My friend is following you on Instagram.” I did’t give it much thought initially, but when I thought about the pictures I share and the words I write — especially about my children with disabilities — I felt a sudden sense of dread. These are the kids who go to school with my kids. Anything I write about them, their friends will know with as much detail as I share. It was a sobering moment of the responsibility I have to protect my children’s privacy.
My kids have reached the age where I can no longer write about them with the same oppeness parents do when children are younger. It is no longer appropriate.
If I, as a mother, want my children’s peers to treat them as friends, I must be the first one to uphold their dignity and treat them with the upmost respect. Disability does not change the fact that some things are not to be shared publicly. Ever. About anyone. Whether they understand it or not. Whether they are aware of it or not. Whether they are disabled or not.
My rule of thumb is, if I wouldn’t divulge those details about a typical child because it would be embarrassing, demeaning or violating, then they are embarrassing, demeaning and violating for a child with a disability, too.
I believe it is possible to be an encouragement to other parents of children with disabilities while still protecting my children’s privacy.
I can still tell my story and I get to choose how vulnerable I want to be about my own struggles.
My kids, on the other hand, have to be off limits because only they get to tell their personal stories. Anything I write about them through any social media channel or written word, I must assume will be read by their friends and peers. What do I want the friends to know about my kids? What picture am I presenting to their friends? Are my stories dignifying and respectful?
My kids’ disabilities are a part of what makes them who they are — and they are pretty incredible. I think this is what is most important for anyone to know about them.
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