Sunday, August 17, 2008

Unlocking the door

When you become part of the world of special needs, there's a lot of emotional crap that goes along with that. I have a good friend who runs Sibling workshops -- that is, workshops for Siblings of people with special needs. She told me that the most critical thing she does before starting a session is to verify that everyone in the room is, in fact, a Sibling, because there are things said in the room that you don't say otherwise.

It's not just that you don't say them to other people, it's that you don't say them to yourself. You say them in this room, you unburden yourself of these words, these thoughts, these feelings, and then you leave the room, and you go on with your life.

My friend, of course, is a Sibling herself, and so while she is much more aware of my own emotional crap than most other people, she's not a Parent. (That is, she is not a Parent of a child with special needs; she is a parent to four fantastic children.) So while her empathy, like her friendship, is something I treasure, it can only go so far.

In the first days after D's diagnosis, when I really thought I would lose my mind, this blog was my room. It was the place where I could say the things you don't really want to say to yourself about your child.

In the beginning, I was like an addict new to The Program. I went to meetings a couple times a day. And over time, I have gotten the addiction under control. Except for when it isn't, of course.

My purpose has changed over time. I want to be a resource for parents of kids with Sotos syndrome. I want to be a friend to parents of kids with special needs. I want to amuse and entertain.

I am toying with the idea of putting my name on this blog and linking it to my professional blogging endeavors. If I do that, I will probably edit a handful of posts, which bothers me. I'm trying not to think of it as censorship, more as not needing to go out of my way to hurt people, not that all people necessarily deserve that courtesy.

I am NOT toying with the idea of leaving this blog. Not for a second. God, no! I'd rather give up eating.

I would love to hear from any of you who have come out on your blogs, what led you to that decision, and how you feel about it now.


ella said...

I think this blog would be a great resource for a wide audience, and I think your writing is exceptional and publicizing it would be great.

That said...Don't understimate the importance of a "safe space" where you can say (or scream) all those things that you'd otherwise keep bottled up. If you do put your name on this, perhaps you might move the un-edited versions of those few posts to a new anonymous/private blog (password-protected, or only available to e-mail addresses you've authorized, or whatever) so that you still have that kind of forum, for the moments when you need it.

DESJ and Company said...

I, like you, am a Parent. I, like you, have a blog where I VENT. I use my full name on my blog-my friends and family (and increasing amount of strangers) read my blog. I hope that if my friends don't like what I say, or get offended by something, that they stop and think for a moment that they have not walked in my shoes and surely cannot judge me. Also remember that it is the CHOICE of any person to come and read the blog every day-if they don't like it, they don't need to read it.

Anonymous said...

As a new parent with Sotos baby, 17th month old, your blog make me laugh a lot concerning the description of the beginning, (exactly the same story, worse everybody is high level university doctor in the family)...and cry for a same "sadness" concerning the disability. (no is not going to school)
But today in the play ground, a mother very kindly told me "oh, is not walking, oh, is not talking either" and I answer "you know, you get what you get...." and I felt good.... Thank you
Another coincidence, I am also discovering the world of special needs....

Melissa Ramirez said...

I have a blog about my extraordinary kid and I posted recently after a craptastic day. I had people asking if I was "ok." I deleted the post. I am known for being a strong and encouraging woman. So, when I don't feel strong and encouraging, I don't post.

I want to tell you to come out so I can read your other stuff. You have talent. But, if I were you, I'd stay anonymous. Your blog has an honesty that not all can unleash so freely.

Then again, we Parents have to stick together and if you could help us even more by coming out, then come on.

Basically, I can argue either side. Good luck with that one.