Tuesday, March 1, 2011

The Dive Bar Welcomes: _______

Jillsmo at Yeah. Good Times has an occasional feature called The Dive Bar where people can send her things they'd like posted, but don't want to post to their own blogs for one reason or another. Today's post hit close to home:
Tuesday, March 1, 2011

I figured rather than saying "Anonymous," I'd be a little more creative. 


Autism is kicking my ass.
Because I hate how relieved I am when the bus shows up in the morning.
Because I hate that my heart starts beating faster when it returns in the afternoon.
Because every day is like walking through a mine field lately.
Because every day I hold my breath, waiting to see if my child will be breaking things or barely holding them together.
Because nothing is helping any more, not one fucking thing.
Because no one is interested in helping anymore either, autism like this isn't so cute.
Because we have been doing this for years and beat to a pulp.
Because we have tried diets and supplements and tested pee and mailed shit samples and been on ever psychiatric medication under the sun and nothing.
Because I always scoffed at those people who let their children go to an inpatient facility.
Because I always thought that would not be us.
Because now, I am painfully, painfully aware of where those people are.
Because now, that desperation and that feeling that autism has taken far too much control and you just can't let it take anymore, that feeling sucks.
Did I say autism is kicking my ass? I take that back. 
It's not just kicking mine, it's trying to knock down my child and for once, I'm out of moves to fight back.
Reprinted with permission from: http://yeahgoodtimes.blogspot.com/2011/03/dive-bar-welcomes.html
 I've been there. For months at a time. Whenever GL's meds stop working. And during those times, we don't know when they'll end, or even if they'll end. Neither does his psychiatrist. I'm not being pessimistic here; anything more optimistic would be lying. We try one med after another, and nothing helps. Some meds make things worse, even though worse seemed inconceivable. Every time so far, we eventually found a med that helped. Things would improve for several months. Then they'd start to decline again, and we'd have to increase his dose. Eventually, the new med wouldn't work at any dose. It's called tachyphylaxis. For GL, it typically takes about a year, but it has been as long as 18 months, and as short as 6. Every time so far, his psychiatrist has been able to find a replacement that works. There's no guarantee that will continue.

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3 Comments:

Blogger jillsmo said...

Thank you for sharing this :)

March 1, 2011 at 5:50 PM  
Blogger Arby said...

This was a refreshingly honest yet painful post to read. I hope the fmaily in question finds the help they need.

March 2, 2011 at 7:50 AM  
Blogger Big Daddy Autism said...

Love the Dive Bar (I've sat on stool there myself several months ago) and I especially love this post.

March 4, 2011 at 1:37 PM  

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