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Monday, March 30, 2009

It pays to Twitter

Because then you find out about things like this:

Slow Recovery

The house of ick is slowly getting better. The boy's been a limp noodle for most of the day, but his fever is gone. The girl came down with the ick last night, but she only lost one meal and has done much better than the boy did. 

We're in the process of trying to decide what extra services we'd like to ask the state to fund this year. We can get a family grant for partial funding for something. We need to find out if they're going to recommend the AAC device, and if so, how much we owe. If the AAC is no longer a recommendation, I think we'll look at some private OT or ABA services.  

Sunday, March 29, 2009


The boy is sick this weekend. It's no fun at all. And studies about fevers and autism? Not in the mood for it now, tyvm. I can't stand it when he's a limp noodle and wants to sleep all day. Poor baby.

I will say that he could reliably hit the toilet with puke, which gives me hope he can do the same with poop in the near future. And on the further good news front (knock on wood) none of us have come down with the symptoms.

Wednesday, March 25, 2009

Saw Peter Bell

Yeah, that Peter Bell. Currently of Autism Speaks and formerly of Cure Autism Now. He seemed like a nice enough guy, and he certainly seemed like someone who was only working for what he thought was best for his sixteen year old son. 

However, I still have such mixed feelings about Autism Speaks. I'm not going to condemn them for wanting to cure autism. I know plenty of adults on the spectrum who would, but I also know plenty of parents who don't think of "curing" as completely getting rid of what makes their children unique and quirky. I'm not going to condemn them for being an organization aimed at parents or for doing research on genetics. I think there's room for all of that. 

They sent me a 100 Day Kit, which really was helpful. They send money to state organizations that do help with education. They lobby for insurance reforms. They do a lot of good. 

They also do a lot of harm. Their weaselly statement about the Omnibus decision was really stupid. It didn't accurately portray the nature of the decision, and the statement that they're going to continue to fund research into vaccine-autism links makes me think they'd be wasting money on pointless research instead of advancing science. 

I also don't like that "biomedical" has become a code word for "quackery." Parents end up spending a ton of money on treatments for their children, and if Autism Speaks offers them the same level of clear information that they did with the whole Omnibus statement? Hooboy. 

So, yeah. I have mixed feelings. 

Saturday, March 14, 2009

Made some T-shirts

Just one design, since I just slapped something together today. Maybe I'll add more later, or maybe I'll rotate the designs around until someone buys something. I'm thinking  I might add peer reviewed citations to the back. 

Or, you know, maybe I'll lose interest and never make another design. I deliberately priced it at the break even point to upgrade to a pro level shop.

Wednesday, March 11, 2009

Been Reading

So, I've been reading The Daily Gonzo, and she's just cracking me up. And making me angry. Not at her, but at my favorite quackery spokesperson, Jenny McCarthy. 

She's brought up Jenny's complete and total salesmanship on this. It's almost irrelevant about whether or not she believes or doesn't believe in what she's selling. She's definitely selling it -- and herself. She's getting paid big bucks for speaking engagements. She's got a "non profit" website that sells crap and sells advertising spots to more places, and she's obviously been coached (or has a good instinct) for how best to market this. Gone are fart jokes, naked photos, and goofy faces. Also gone are any references to "Indigo Moms" or "Crystal Children." Referring to God in new agey terms is out, too. In are "serious faces" and "Gosh, now I'm a mommy so my life is sooo changed" remarks. Out is having a special child, in is having an injured child. Whether or not he's "cured" depends on the day of the week and the direction of the wind, from what I can tell. 

Hey, it's true that being a mommy changes your life, but it's disingenuous to claim your son's autism was caused by the toxins in his vaccine when you  smoked  through pregnancy and went straight to formula.  Also? I find it ironic that she's got a love of injecting herself with diseases. Does she know what botox is? Well, I suppose bacteria is organic. 

Anyway, I'm leaning less on the idea that Jenny really believes this stuff and more on the side that she's found a marketing angle and is playing her audience for fools while relying on mommy sympathy  to deflect criticism. 

Now, I don't think selling yourself for speaking engagements, selling your products, or selling commercial slots on your website is wrong (obviously), but selling quackery you may not even believe in with a carefully crafted image? That. Pisses me off. 

Tuesday, March 3, 2009

Busy in Thought

So, for those wanting to know about the girl's IEP. They told us that further evaluation was probably warranted, since there were quite a few things we all agreed on that tended to make them think we might be looking at autism with her, too. 

Yeah, not thrilled to hear it, but I do think they have a few points. They made it clear that her school services would not change. They are already integrating some social therapies into her speech therapy (teaching her to recognize nonverbal cues.)  And since she's high functioning, she wouldn't be eligible for any outside funding for therapies, either. 

Because of all that, it makes little sense to get her evaluated right now. Perhaps we'll tackle that when the insurance company won't charge us several hundred dollars for a "covered" service. Or perhaps we'll tackle that if it ever comes to the point where she isn't coping well in school in spite of supports.