Friday, August 15, 2008

Sometimes You're Up..

8/17/08 - the comment line to Barbie's piece just keeps growing. Mostly by folks who can relate to what she wrote. And then again, there were of course several *autism isn't like that* comments too.. Well, here's what I got to say about that: If your reality of autism is not like what Barbie described and has never been like Barbie described, I am thrilled for you, and for your child(ren). And I hope you never ever have to experience what some of us go through. But that sure as heck does NOT give you the right to downplay (or sugarcoat) our experiences, or to try to take the *gut punch wake-up call* out of describing our experiences by immediately launching into a song and dance about how happy some people are that they have a spectrum disorder....

Once Salamander can tell me he's happy dealing with all the b... s... he deals with on his not-so-good days, then fine, I'll back off and my job as a parent is done. But until such time? Just get the heck out of my way and let me do what I need to do....


and sometimes you're down.. But oh boy, going down with a child on the spectrum can lead you to the deepest darkest bowels of hell.

Read this piece, written by a fellow *sister in the 'hood*.

I am sure there are going to be many out there who will think that she should not have written what she did, that she should have kept this private, that she should have kept the *everything is just fine* mask firmly in place.

I'm so glad she didn't.

Barbie, if you happen to pop in here: you are one gutsy lady with a set of big brass ones. And it is so so so d#mn obvious from what you wrote that you love your Jimmy dearly and that you'll travel BACK to the bowels of hell 50 more times if that is what it takes to give Jimmy a shot at a decent life. You are an inspiration, and you've given ME the courage to keep writing about the not-so-good and the downright (f)ugly stuff that can be going on here. Keep the faith, sister. Keep the faith.

[and yes, I am crying as I'm writing this... You see, Barbie's story could have been mine. Has been mine. Just change a locale, change the mode of transportation, and a few other *minor* details..]

ADDED at 11:15 am:
And then of course there are always at least a few who will try to downplay what some of us experience with a sugary *but not all kids with autism go through stuff like this* coating. Yup, that's right. Not ALL do. But many DO.

I fully admit that I have a very snarky tongue today, and it probaby shows in my comments on AoA. So bite me!!

Oh, and the Grand Universe can be a really twisted Bi(o)tch. Most of the time I pay no attention what so ever to horoscopes. But lookie see:
"You may find that your emotions are a bit erratic today. It could be that your mood comes and goes in powerful waves of energy. [..]. Let your heart speak its truth at all times."
Yup, indeed and guess I did that already...

4 Comments:

At 12:30 PM, August 15, 2008 , Anonymous Anonymous said...

Your "very snarky tongue" has been quite entertaining today!

:-)

 
At 12:52 PM, August 15, 2008 , Blogger Petra said...

Glad my mouth running away with me is making somebody smile :)

I'm tired, so tired, so very tired. I have *accident* laundry everywhere, I almost drove off the road this morning while trying to keep Salamander under control in the backseat, and I had to basically dump a crying Potatey at daycare earlier today (as Salamander this morning could not tolerate anybody around him but me, and as he was about to flip out at Potatey's daycare) and then run (at least Potatey is now in a safe environment and will be well cared for). Sure made me feel real good as a parent...

Then after Salamander and I got back home and I took 5 minutes in my home office to take care of a few work things, Salamander almost put his head through a computer monitor as *his* computer just took a tad too long starting up.

TG things have calmed down considerably in the past 45 minutes or so.. but I'm on eggshells as I just don't know if we're through the worst of it, or whether there's more *brewing*.

So anybody want a helping of MY *autism flavor du jour* today?

 
At 1:27 PM, August 15, 2008 , Anonymous Anonymous said...

honey, rant rave scream holler all you want!

I love what you wrote here and on the AoA page.

We cannot forget that even through the "vanilla flavored" times, we still have "vomit flavored" times and we have to help eachother through them and in turn, they help us realize that we are not alone in this!

 
At 3:44 PM, August 17, 2008 , Anonymous Anonymous said...

I love the story and the honesty. I find the parents who sugarcoat their lives with autism to be rather pathetic and are fooling no one.

 

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