Posting Embarrassing Stuff About Our Kids on the Spectrum

So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be.  I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs.  Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see.  This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do.  No clear pictures of faces, no names, no locations.  There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more.  Mostly about why I started this blog in the first place.  It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face.  This is apparently still a problem.  People are given this life-altering information and no help.  I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing.  Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web.  But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy.  After all, I am his mom, and capable of making lots of decisions about his life.  As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal.  Thoughts?

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