Saturday, September 20, 2008

Royally PISSED OFF...

I do not need to be lectured for over 30 minutes by a person who has NO IDEA what goes on in my house about:

  • while there is obviously a rise in autism, it can't be due to environmental factors as the environment is so much cleaner these days.
  • the fact that Salamander is really struggling with his LDs right now is really not that big of a deal as "he's obviously so smart, he'll be just fine."
  • and that, considering that there are 10s of thousands of kids with autism these days that, really I should just trust the school, as they *should know by now what to do*.

While there is truth in all of the above, it's not quite that simple and straight forward. And would it have *killed* the other party to just *shut up for 10 minutes* and let me say my piece?

After all, who's dealing with all this stuff on a daily basis; him or me??

For full disclosure, I like this guy. I really do. He's smart and articulate, he's very involved with his kids, and I adore his wife. Plus our collective brood absolutely love each other and they play great together. But sometimes the guy can be a really pompous d1ck.. and well, right now my tolerance for pompous d1cks is just not very high.....


At 5:40 PM, September 20, 2008 , Anonymous Jeanne said...

Maddening!! When are these people going to make the connection between how well the boys are doing and WHO IN THE HELL ensured this??!?!

Damn, you put up with a lot. I don't know how you do it. Really. I can hardly stand the couple times a month negative shit I have to put up with by various people in my life. I cannot imagine having the other half of the parental unit questioning my every move and daring to say the things you've had to hear.

You just keep on doing as you've been doing and ignore the complete ignorance of others. Those of us who understand what is going on TOTALLY GET you and what you are doing, and we so totally respect you for it!

:-) My hero!

At 6:01 PM, September 20, 2008 , Blogger Petra said...

Actually, it wasn't the other half of the parental unit this time (but it could have easily been, I'll grant you that)...

I just added a little clarification.

At 8:48 PM, September 20, 2008 , Blogger Petra said...

Boys are in bed, so now I have a little more time to read what you actually wrote.. LOL...

Truth be told? I really don't let anybody tell me what I should or should not be doing with or for the boys, and most of the time I do not even feel compelled to explain or defend (or God forbid, ask for permission or approval). Really, if I had listened to all the armchair experts around me, Salamander would have been on a feeding tube by now and most likely under heavy duty psychotropic drugs. Potatey would have developed full blown autism (considering his 3 week regression into autism land after his varicella vaccine at approx. 15 months).

But that being said, the various levels of b## s## around me does get under my skin.. some days/times more than others. And I am sure if the boys had not been progressing (and are progressing) the way they have been, I may have just caved under all the negativity...

While it would certainly be nice if some people in the boys' life would be more willing to consider that maybe, just maybe, the *wacked out* life style I *force on the boys* has something to do with how well they are doing, I no longer expect that to ever happen. I think that for some people it is just *too damn scary* to take charge and to start rowing against the tide. Their loss really, not mine. After many years of trying to explain, of trying to get support from certain people, I finally got to a point of "You're either with me, or just get the f#ck out of my way."

Has that attitude cost me? Hell yes. But at the end of the day, this isn't about me. This is about my boys, and about giving them the best possible chance at a happy and healthy life (and considering their genomics, as well as *stuff* present on both sides of the family, their odds weren't exactly stacked in their favor).

At 10:51 PM, September 20, 2008 , Blogger daharja said...

You're not the only one pissed off.

I went to my first ASD parents group last week (for parents with kids with ASD, not parents with ASD! *lol*).

Turns out that of the 5 mothers present, 3 of us were on Epilim (sodium valproate) during our children's pregnancies.

This mirrors my experience in Melbourne, where a sizeable proportion of autism kids were exposed to this drug during pregnancy.

Of course, the mainstream opinion is that Epilim is still not officially linked to autism, and no warnings are given to women who take this drug and are of childbearing age.

When I chose to get pregnant (in 2004 - not exactly the dim dark ages), I asked specifically what the risks of epilim were. I was told they were spina bifida and cleft palate. That was it. So we did the checks by scan, and both were ruled out. There was no mention by my neurologist of autism, and ironically (how I laugh hollowly now) I *chose* to stay on the drug because the risk of possibly having a seizure was decided to be a possible problem (my epilepsy is well controlled, with my last seizure being back in 1995!).

Yay. How I regret that decision now. Boy, how I regret it.

But here's why I'm pissed off. The drug Epilim is STILL being prescribed to pregnant women and women of childbearing age, and STILL no warning about autism is being given to them.

This is one of THE most common causes of autism, one we CAN do something about, and yet we're doing NOTHING.

I go to chemist shops, and can see all the distinctive purple boxes of Epilim lined up behind the counter. And all I can think is "autism. autism. autism. autism."

That's why I'm pissed off.

As for my son, he's doing well. He's got mild autism. But every single day I have to remember that I was told lies, and every single day I have to think that somewhere out there another woman is taking epilim, and thinking about having a baby.

I'm going to cc this to Kim Stagliano, and hopefully she'll publish it on the autism blog. I didn't intend it to be such a rant. Sorry.

But yes, Im listening to you about being pissed off.



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