Thursday, June 9, 2011

this and that....

Wow, what a morning of good posts in the blog-o-sphere.  I need to share some of them.

First, over on Diary of a Mom, Jess talks about how hard it is to be around people who are superficial, who aren’t REAL.  She talks about how many of her relationships have faded in the time she’s been an Autism mommy.

Its interesting, because I was literally just talking to my friend Allison about this yesterday, and its been an ongoing conversation with another mom friend of mine. .  Dominic has exactly zero playdate friends.   Part of that is scheduling and schools – the kids we used to play with are in other parts of town, different schools.  Dominic’s schedule is nuts.  Part of that is that it is really difficult for the people who knew Dominic pre regression to relate now, to understand what would be something he’s able to do.   Some of it is that many of the superficial friendships you have in a mom’s group can’t hold up to this kind of intensity.  (the handful of adult  friendship’s that HAVE held up are the ones that took root outside playdates)

We went to the zoo with Allison and her kids earlier this month.  Dominic did great – one episode of non compliance, and some minimal fixating. I was so proud of him.  Allison was surprised that his behavior was as good as it was; taken aback by the fixating; and absolutely exhausted in watching me.  Hearing someone tell you that a child requires 100% supervision is very different than watching said someone provide that supervision.  I do not take my eyes off of him in public, period.    The funny thing about that day is, I didn’t feel like I was doing any more than I usually do. Which probably explains why I’m generally tired most of the time.  

The other link I want to share is to Autism mommy bloggerGinger Taylor, who is a fierce activist.  She’s had to become that for her son.  She is the director of the brand new Canary Party.   In its infancy, it is a political party geared towards clearing medical/pharma corruption.   Her blog post today talks about the evolution she’s gone through, from being an Autism Mommy just documenting what helped her child make progress to becoming an activist. 

Quoted from her blog – because its worth the read.   And really, go read the rest of it too.  I am making time to be a part of the Canary party, time I just don’t have.  Because its important.

“As [my son] got better, and I got excited about sharing his progress on biomed, I found more and more bad faith players. I made the oh so naive mistake of thinking at a middle aged physician using an internet moniker to mock doctors he didn't like might actually have a good faith conversation on autism causation and treatment. I thought the American Academy of Pediatrics would want to know about treatments that make struggling kids healthier and would want to reform their practices and policies to prevent neurological damage to children. I thought that the Centers for Disease Control and Prevention would actually want to Prevent and Control Autism. This blog is a long history of all the people I took at their word when they said that they wanted to prevent autism and serve those who have it.

It took me a full year of making excuses for all these bad actors, of thinking... 'well if they only knew that______ then things would change quickly' and 'I am sure that they will want to sit down and look at all this amazing information any day now' and even 'If they would just talk to us face to face and see our kids videos, the will see we are not crazy people and the dialog can begin'... and then CDC et al ignoring David Kirby's book, that I finally started to think... 'oh... maybe they know all this and don't want to deal with it'….

Well at this point if we don't declare these people working in Bad Faith, then we are just morons and we get what we deserve. That is all their track record shows, for much longer than the seven years that I have been documenting these issues.

And when we look around us, we are only one of the groups that is being treated like this. Families struggling with cancer, lupus, chronic lyme disease, chronic fatigue, diagnosed mental disorders, and dozens of other problems, they are getting jacked in one way or another by abuse and neglect from the medical establishment.

It is time to call a spade a spade and say outright that corruption in the medical establishment is rampant, that power and profit motives are being served at the expense of patients, and it is time for the corruption to be cleaned out and for the abusers to loose their jobs. …

We have to separate the wheat from the chaff, remove those bad faith profiteers posing as health professionals and replace them with people of good faith, actual healers, who do their jobs.

We know who the bad faith actors are. We pretty much knew it after our first encounter with them, but pushed it off and waited for them to prove it 20 or 30 more times over before get around to asking that they be replaced.

But as we have learned that our good faith and reasonable "asks" are just ignored (and sometimes mocked).  It is now time to DEMAND the medical system change, or change it ourselves.

Thus is born The Canary Party.”

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