Followers

Blog Archive

Search

Powered by Blogger.

Friday, December 11, 2009

Adventures in Christmas Programs

And audiologist exams, and vision screenings, and potty training, and....

Let's just say the boy's not been much in a cooperative mood lately.  He's been sick recently, which doesn't help matters, but he's been a royal uncooperative crank in the last month or so.

This is actually good news in some ways. I mean, it's a royal PITA in a lot of ways, but it's good news because he's no longer the passive, "good baby" that he used to be. He doesn't sit in the shopping cart or stroller and watch as the world goes by. He won't stare dully at you when you try to get him to make a choice.

He's decided he should be part of the world and interact with it, and express opinions. That opinion is usually "no." That's very typical for preschoolers. It's the first and easiest opinion to express.

But as I resign myself to caring for his Christmas program meltdown, and get frustrated that he won't wear headphones for a hearing screening or tell the nice clinician what's on the card on the room is full of all sorts of other things to see, I remind myself that this is a positive step. A frustrating and annoying step at times, but a positive step.

In other, somewhat related news, teaching to the test begins early. The preschool teacher and we agreed that we should start teaching him to point at specific objects when asked and to find the difference between a series of objects when asked. Why? Those are two skills commonly used in IQ tests. We're trying to give his baseline assessment for kindergarten as much of a boost as possible. We all agree that he belongs in a regular classroom, not in a resource room.

Tuesday, December 1, 2009

Wednesday, November 25, 2009

IEPaloooza

So after having 10 people sit around in a circle to discuss one little four year old, we have an IEP for half a year. And the school district is threatening to force us to go to a different school if we want summer school. Because taking an autistic boy and putting him in a strange environment with new teachers for three weeks in the middle of the summer is productive. Yeah.

Anyway, they're thinking he's going to outgrow his AAC and need something more advanced soon. It's clearly appropriate for him. He navigates it like a pro. However, he's also created new problems by having a voice. Just as with spoken words, sometimes he's communicating wants and needs, and sometimes he's just making noises for internal reasons not relevant to the discussion.

The preschool directer thinks they pretty much have this one under control, and I tend to agree. Rather than saying something like, "No talker!" or "Talker down!" like the school district suggested, the teacher just says, "But we're not talking about X right now. Let's talk about Y." Just like any other kid babbling about something unrelated to the lesson. Sometimes when the lesson is over a skill he's already mastered, they just turn down the volume on his AAC and let him explore as much as he wants. This? This is why I am not taking him to a school district preschool.

Our next IEP will be for transitioning to kindergarten. I have to admit I'm concerned about this. I have faith in the school he'll be attending, but I can't control all the variables there either. What if he gets a horrible teacher? How much are they going to underestimate his abilities? How bad is it going to get next year when he's stuck in this new routine?

I'm glad he's doing so well with reading, because I feel like that's something that shows proof that he's educable. And it saddens me that he needs that. I feel like when it comes to special ed, some kids are taught, and some kids are warehoused.

Monday, November 9, 2009

Conventional Wisdom

Yeah, I'm a slacker. I learned more at the autism conference I recently attended than what testing goes on inside a DAN! office.

ABA is on the decline.  Several speakers with a background and education in ABA spoke of the shortcomings, including a certified and practicing behaviorist. Mainly that while it's effective in some cases, it's often pushed as a panacea and the only therapy anyone should use. One professor said that kids who had the sometimes recommended level of 40 hours a week of intensive ABA were simply overwhelmed by it.

I tend to agree. I have concerns about the true effectiveness of ABA beyond teaching a discrete behavior. Yet I, like many others, tend to hold it up as an example of an evidence based practice, because it's certainly better than admitting that there's very little evidence based practice in the education system, period. This would certainly be a better place to throw research money than disproving the vaccine-autism connection again.

The problem is that many states are starting to role out mandated autism coverage laws. What gets covered? ABA. Speech therapy, occupational therapy, and ABA. That means there are situations where a family would be told that they can get ABA or nothing. Let's hear it for teenagers that demand a reward for every action. Let's hear it for kids being taught that food is a reward. ABA in theory isn't that, but in practice it quite often is.

That said, we're in the process of hiring a behaviorist for potty training. Using the toilet seems like a behavior where rewards and positive supports would be effective. I really hope it works. He's going to kindergarten next year. And while it's not surprising that he's not potty trained, he's got enough social barriers as it is. He doesn't need a poopy diaper incident to follow him around his school career.

Another point:

The phrase "genetics loads the gun and environment pulls the trigger" is in some ways an invocation of Bettelheim. We didn't cause autism in our genetically predisposed children, though sometimes prenatal stress seems to make the difference. And that's an environment we already do our best to control.

Wednesday, November 4, 2009

Hamthrax Vax

So we got the kids their H1N1 vaccine. They didn't sprout extra limbs, get the flu, or develop strange neurological symptoms. I did notice my son had autism after the vax, though.  

You'd think preventing a potentially deadly illness with a treatment with low risks would be a no-brainer. But it is not. Thanks, mercury militia. The chance of having a severe allergic reaction to a vaccine is roughly the same as the chance of being struck by lightning in a given year. And yet, I had parents asking me if we noticed "any symptoms."  I saw someone else asking if it was normal to have a sore arm the next day or if it was a sign of a bad reaction.

One told me that she was foregoing vaccination, since she'd driven H1N1 away by giving her son some homeopathic remedy at a 30C dilution. For those not familiar with the dilution required - that dilution is so extreme there is no trace of the original solution. Yes, she knew it was nothing but water. She said it was an "energy" thing.  Well, I'll take knocking on wood and crossing my fingers. Just as effective, but a lot cheaper. And whenever someone in my family doesn't get sick, I'll credit my finger crossing, and when they do get sick, I'll claim I forgot to cross my fingers or didn't do it soon enough. 

Anyway, nuttiness.

Thursday, October 22, 2009

Getting Inside a DAN! Head

So I went to a presentation from a DAN! doctor. I'm already a skeptic, I'll own that. And yes, I knew I was mainly there for the snark, but I'm also curious. What is the appeal?

Ok, so her background. She's a health administrator who went back to school to become a chiropractor with DAN!, "detoxification," and HBOT certifications. That's a lot of woo in a very concentrated package, but she's labeling it "integrative care." And there's not a single one of those things with any solid, evidence based science behind it, but all of those treatments do require regular, repeated visit$.

Anyway, as she was giving her presentation, she focused on tests. Tests are good. Tests sound very scientific, don't they? Turns out DAN!s love their tests. Actually, I'd gathered that from listening to other parents.

It was rather vague about why they chose particular testing. It sounded a lot like a shotgun approach - give them tons of tests and then treat anything that comes back abnormal.

On the surface that doesn't sound too bad, except for a couple of things. For one, she already questioned the test range. She seemed to think that the labs determined their normal ranges from people who submitted samples and were "mostly sick," so she seemed to think a result in a normal range wouldn't necessarily indicate a realistic normal range. I didn't get a chance to ask her how exactly she determined a normal range, since the labs apparently didn't do it. Does she guess? If so, why test?

Anyway, another problem is that when you take enough statistical samplings, you will eventually find something that isn't in the normal range. Because it's an average, and some people are going to normally and naturally fall at either end of the curve due to natural variation, lab errors, etc. That doesn't always indicate a problem. If someone isn't showing symptoms, chances are there isn't a problem. She seemed to think people wouldn't always exhibit symptoms when they came back with abnormal results, but they should still be treated. She also seemed to think some people would exhibit symptoms but have normal lab results. Those people should also be treated. So people should be treated whether or not they had symptoms and whether or not they had abnormal test results.

There were blood tests - too hight of cholesterol was a problem, as was too low. Normal results could also indicate a cholesterol problem. That seemed to be a theme. Even if the tests come back negative, you're still sick and need treatment.

Allergy tests - and beyond the blood IgE testing, (not as accurate as skin testing, but not as traumatic on the child) she liked to do IgG tests and claimed allergies could have a 72 hour reaction. Ok, first off - IgG is not in any way shape or form a valid allergy test. But now picture this. Your trusted practitioner gives you a laundry list of allergies and tells you that you could see "symptoms" up to 72 hours later. So for three days you're chasing shadows to find some vague symptom. Oh, a headache - must be an allergy. My kid must have had something he shouldn't have had. I've already got a taste of this with lactose intolerance, which does manifest itself the next day as a nasty diaper, but 72 hours later? Good golly, I'd never get any work done with the backtracking to figure out what he ate.

You somehow get past the impossible allergy and cholesterol testing? Well how about yeast. Yeah, we can find some yeast in your poop. We can find yeast in just about everyone's poop, because that's where it grows, but now you get the disgusting and OCD inducing joy of knowing just how much and what type if they can culture it.

I asked if yeast was always a problem or if she had a level at which she thought it should be treated. She gave a vague answer that some yeast would be ok in a normally functioning gut but that other people would need to have it entirely eliminated. In other words, if she deems your child to have a bad gut - and autism, according to her, involves "toxin and bacteria" in the gut - she's going to say you've got to get rid of all the yeast. Ever try to get rid of a standard, common yeast overgrowth in a young child's mouth? Let me tell ya, that stuff doesn't want to go away. Now I'm trying to picture getting rid of it entirely, and I'm thinking she's got a cash cow. If only cash cows were bulls, because we could... never mind.

Toxins, oh the toxins. She does indeedy chelate. My partner in crime asked her several questions about the safety of chelation, and she seemed to think that oral chelation was hunky dory in the hands of a qualified specialist like herself and that any safety/ethical concerns about clinical studies on chelation involved IV administration. The chemical involved is EDTA, which could be either IV or orally administered. If anyone in the know could tell me if the proposed studies involved oral or IV EDTA, I'd be much obliged.

Celiacs, celiacs, oh my.
One of the other things she finds is a lot of "non enteropathic celiac disease" My Google tells me that enteropathy is a disease of the intestines, and celiac disease is gluten sensitive enteropathy by definition. So a non enteropathic version would be an IgE reaction to wheat? Or possibly another case of "even if the test comes out negative, you're still sick."

IgA deficiency. This seemed to be the only thing she mentioned that when I Googled actually existed as a real problem. And, surprisingly enough, you can have it and be asymptomatic. Score one for the testing.

HBOT
Yes, HBOT therapy. It's the new secretin. She cited a study by BMC Pediatrics, and my thought was what's so special about HBOT? What's different that couldn't be done with a weighted vest and an O2 tank? My partner in crime asked her if there were any studies available in journals that weren't open access and then suggested several reputable journals where one might find medical research. She answered that the study met with the approval of some HBOT industry group. Isn't that a bit like Toys R Us approving a study that claims people should buy more toys?

Anyway, I'm sure I'll remember more at some other point in time. I've got some good thoughts from the conference to blog about, too.

Tuesday, October 20, 2009

One step forward...

Right now he's learning "Ouch! Are you Ok?" which would be better if he wasn't banging against the wall to make the ouches. I don't think he's actually injuring himself, but it's still disturbing. He went through a phase of fake sneezing and asking for bless you's, so I guess this is along the same lines. Sometimes I wish I had the magical answers of how to react in these cases. Right now I'm going with ignore it and reward any other activity.
Oh, oral fixations are back, too. I had hoped he'd outgrown it. I've been giving him cinnamon gum, which he loves. I'm hoping the strong flavor and chewing will satisfy whatever it is that is giving him the urge to chew on inappropriate things like strings, knobs, doors, shirts, etc.

Saturday, October 17, 2009

My Partner in Crime

So, I was at an autism conference. As usual with most conferences, there was a mixture of great info and really bad stuff. One otherwise good presentation mentioned Thoughtful House as a great organization and then went on to stress the importance of quality research. Um...
Anyway, I had a partner in crime. Over lunch I was talking with a couple of self advocates, and I mentioned Jenny McCarthy and woo. He looked up and said, "You don't by any chance blog, do you?" Ha!  Turns out he thought I was kwombles. Not quite, but a really good guess. She's brave enough to go sans pseudonym.
By far the best of the worst session we saw was a DAN! presentation. It was in a lecture hall. We sat in the back, or as he put it "closer to heaven and further from hell."  He asked her about safety concerns with chelation and the validity of HBOT research. I asked her if she thought any detectable level of yeast was acceptable or if she treated all of it.  She didn't have fantastic answers but, that all is a blog post for another day.

Sunday, October 4, 2009

More vids


And part 2:



Thanks to Orac for the tip.

Friday, October 2, 2009

Not dead yet...

Just busy and distracted. Things of note, I suppose:
My son is talking more. Having the AAC has really helped him find things to talk about. He's attempting polite small talk.

Very few people would actually understand any of this. He's mostly speaking in vowels, and our familiarity with what he's saying and context let us know about it, but the rest of the world remains pretty clueless. Which is another good reason he's got a talker.

And now for the outrage.



Really, Autism Speaks? Really? This is how autism... speaks?

Boy, I'd sure love to give you a donation. Might help you buy some more holy water and crucifixes to fight this demon thing off before it breaks my marriage up for fun. Let me find my wallet. Shoot, where'd I put it? Dagnabbit, Autism! I told you to stop stealing my money! Ack, it's got me! ... Brains.... must eat brains....

Saturday, August 22, 2009

We Have a Talking Box

Long time, no blog.

Let's see. My son has a shiny new AAC. In less than a week of using it, he managed to reprogram the food page to show only the button for pizza. I'm thinking that was inadvertent, but it still makes for a funny story. Oh, and then his sister took it to the other room, where we heard the device repeatedly say, "I have diarrhea . I have cramps. I had a stroke. I have diarrhea."

Oh, and then my husband lost the cord and remembered throwing what he thought was an old phone charger away. Guess what he found after we spent $70 ordering a new one? Yeah.

Good times.

I do think his talker will do him some good, though. At the training session, they stressed that we should also push buttons to demonstrate how it can be used for communication instead of just as a noise-making toy. We did a couple of times, not a huge amount. We're still getting used to it ourselves, right?

Anyway, he still likes to stab randomly at it to see what all it says, but if you ask him if he'd like something to eat, he'll press the eat button or "eat" and then "it" or "eat" and then "food," or sometimes a specific food choice offered to him. Yeah, food really is the way to a boy's heart. Anyway, I think he's getting the hang of it. Hopefully by kindergarten we can get him a real method to communicate when words are failing him.

Speaking of words, we were downtown today, and someone had a Great Dane. My son loves dogs, so he wanted out of his stroller to go pet him. When we approach the owner, my son says, "Clifford!" Heh.

Friday, August 7, 2009

I can't believe she went there

No, it's not Jenny McCarthy. It's Sarah Palin. She went there.

And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

Quit it. Just quit it.

A system where profit determines who gets health care and the sick, elderly, and disabled are denied services because they don't help the company bottom line is just evil. And when you act like a douchey cheerleader for their cause, you're not helping matters at all. I particularly love the implication that those of us who want greater health care regulation are not only unamerican, we're also pro-slaughter of the elderly and disabled. That's so sweet of you.

Tuesday, July 28, 2009

Gastrointernonsense

So I'm off on the interwebs debating people on the new Mayo clinic study that found no connection between autism and GI problems. It's exactly like LBRB says. The argument is "That can't be, my kid has a gluten allergy! This study is wrong!"

Ok, let's take this one step at a time.



People can have autism AND allergies or food intolerance. However, having autism doesn't make you any more likely to have them than the general population. It just means you got two challenges for the price of one.

It means tinkering around with GFCF diets as a matter of course is not necessarily helpful unless you're noticing physical symptoms like rashes, hives, diarrhea, vomiting, etc . And by "not necessarily helpful" I'll say that making complicated, time consuming, and expensive changes to your child's diet, especially when they may already have feeding issues? Probably not wise.

Also, Wakefield = Full of shit. But that one was pretty much a given. Special GI symptom causing autism? Uh, no. Special colonoscopy causing researcher, more like.

Now there's another study on GFCF diet specifically and whether or not it helps improve problem behavior. I'm expecting it to have the same results as a smaller scale study, in that GFCF diets didn't help, but parents thought they did.


Tuesday, July 21, 2009

Stupid in My Inbox

Yeah, I'm not sure why I end up on mailing lists sometimes. Someone sent me an invitation to this conference. It wasn't to a newsgroup or something. They sent it directly to me. Odd.

Anyone who has talked to me for more than two seconds would probably know that this conference? Do. Not. Want.

Doesn't it look nice and professional? I particularly enjoy the gigantic and random fonts used everywhere. Yeah, ok, I'm a design snob sometimes, but make an effort, people!

Anyway, the list of speakers is like a who's who of people who make me angry they're getting a platform to speak. Seriously. The Geiers? Of chemically-castrate-children with Lupron fame? Lisa Sykes, the sue-happy-go-lucky mom who thinks this Lupron and chelation stuff is awesome? Lori Knowles and Dr William Shaw, who are also trying to sell you crap science in a bottle? BTW, she's another example of someone who uses conventional speech therapy and dietary woo and credits the success to the woo. Now she'll happily sell it to you! Oh, and there are more pill pushers there, too. But don't let those evil pharma shills attend the conference with all their science and reason. They're just trying to sell you drugs, man.

So I should ask for the time off work, hop in the car, and shell out $100 by August 1st so I can get the "free" copy of the Geirs/Sykes book, right?

Let's Internet Diagnose Everyone

I guess I've finally "made it." I got a comment in my last entry with a link to an Amanda Baggs denier. Amanda Baggs, for the uninitiated, is an autism rights activist. She lives independently with a lot of supports and speaks out about her experiences. She shot to e-fame when she created this video:


And then she was on CNN and CBS. Where they, btw, interviewed her state-supplied caregivers. If she's faking it, damn, she's good. She's just like Obama with his ability to go back in time and make Hawaiian newspapers print birth announcements.

Amanda Baggs has a lot of strong opinions, which she makes in both video and written form. I don't necessarily agree with all of them, and I don't necessarily disagree with all of them. She is a person with opinions, and they are informed by her personal experiences.

I guess, however, that sometimes the easiest way to disagree with opinions of a disabled person is to decide that the person making them must somehow be faking it. Deaf people couldn't possibly mean it when they say they don't want to hear, and that they are proud to be Deaf right? And yet, they do. And sometimes they even *gasp* express opinions on how hearing people should raise Deaf children. Are Deaf people faking it? So why should it be any different when someone who is autistic says they don't want to be cured?

Sunday, July 19, 2009

Queen for a day

Having a child with autism is nothing like having a child with cancer. If you have no idea what I'm talking about, there's a pile of bitter vomit over at AoA. Thanks to Countering Age of Autism and Gonzolog for the link.

Holy fuck, woman! Get some damned perspective. And some therapy, stat. Yes, it's harder than some people realize to parent a child with autism. Yes, there are extra expenses you didn't consider. Speaking of dead children and mourning for your very-much-alive child that is "dead" in your eyes at age eight is just, just... wow. I think you get the new refrigerator and the crown!


Wednesday, July 15, 2009

Health

The health and insurance debates are making me a little depressed. I keep getting emails to "call Speaker Pelosi" and tell her to cover autism. Right now, I'm just not sure if scraped knees are really going to get covered.

Monday, July 6, 2009

Happy 4th

So we took the kiddos for a long day of fun having. One of the firecracker stands near us has camel rides. Go figure. Anyway, took the kids there. I suppose a less paranoid mom would have just let both kids ride at the same time, but I was concerned that the boy would not keep his hands on the handlebar. It's a long drop. Didn't feel like risking it. Plus? Camel ride. ;-)
\Then we were off to the downtown activities, including a bouncy castle, a carnival ride type thingy with suspended chairs that twirled around, and a bouncy obstacle course.

Guess who absolutely loved each and every ride or event and absolutely melted down with each turn waiting in line and each time his turn ended? Uh, yeah. But our boy tends to have short meltdowns that make it possible to go to something, say sorry about the crying, and go on to the next thing. I figure eventually he'll catch on to how it all works.

Then we ate fried oysters, went home to take a nap for the big event. We got the boy to shout "Boom!" at the fireworks. He, of course, loved them. Loved the colors, loved the loud noises, loved the whole thing. The girl did, too. I was a bit concerned that she'd be upset at the loud booms, but she was fine with them. It's interesting what sets her off and what doesn't. Don't even try to flush the toilet before she gets her ears plugged.

Anyway, the kids came home very tired and very happy. The girl wanted to make sure we'd get to do this again next year. I think we will.

Thursday, July 2, 2009

Progress and the Boy

It's been a while, so here's what all's been going on.

The boy will have his AAC. Insurance is even paying for it. Wow. We can use our family grant money to cover the initial exam and possibly some training on how to use it with him, yay.

I don't doubt that it will be a tool to get him to talk more, not a permanent substitute for vocal speech. He may need some sort of AAC forever, we'll see, but he's definitely making more and more strides toward actual understandable speech.

He's picked up on my repeated attempts to get him to add adjectives to his noun labeling, so he'll point and say things like, "Blue fish. Green pants. Red bird." He actually seems to get some facial expressions. He's been playing Starfall.com a lot, and his favorite game is now the "All About Me" module. He's learned "boy" and "girl," though he doesn't always label correctly. He's learned happy, smiling, sad, and grumpy, and he'll make facial expressions to match. They're still exaggerated, but that's some big progress there!

I don't have to watch over him constantly to make sure he doesn't run away at events and in the store. He'll actually walk next to the cart. He told us he was ready for that step, and he was. Please, please, please let him tell us he's ready to potty train next!

Tuesday, June 30, 2009

A Demonstration in Speculation


So you take your kid to see the doctor. Your kid is vaccinated. Within a week, they develop a fever and start losing language and showing signs of regressive autism. It must have been the vaccine, right? Not necessarily.

Here's a great example of that sort of thinking. Billy Mays. Here's how Fox News reported the story. (This isn't meant to pick on Fox. Other news sources speculated along the same lines.)
They report the timeline: Billy Mays flew in on Saturday. He hit his head in a rough landing. That night, he didn't feel well when he went to bed. He was dead by morning.

It must have been just like Natasha Richardson, right? She hit her head while skiing and didn't initially even appear to be that hurt, but she later died from a brain injury.

Well, wrong. The autopsy says Billy Mays died of heart disease. The rough plane landing was a coincidence.

So, now back to that regressive autism. Was it obvious cause and effect, or was it all a coincidence? After all, kids get sick and have fevers. Sometimes they have harmless fevers as a mild reaction to a vaccine, too. Kids get a lot of vaccinations. Kids typically show noticeable signs of autism around the time they're getting vaccines. I even read one article on *gasp* Huffpo, that says about 600 hundred kids a year would show signs of autism within one week of a vaccine just by random chance.

So when studies and scientists tell you that they can't find a connection between vaccines and autism, they're not doing it to piss you off or discount your personal experiences. Nor are they part of some vast conspiracy to poison children for money. Not that I expect this message to ever get through to the people who really need to hear it, but I'm going to keep saying it.

Friday, June 19, 2009

All my free time

What's been taking up my posting time? I've been working on the website for my local autism support group. Well, I've been overdoing it, but that's ok. I do that. It's going to have a forum, and individual blogs, and an events calendar, and a library system for checking out books, and, and, and ...yeah. 

Those are things that don't write themselves, so I've been spending all my spare time on it. But the cool thing is that I'm building skills I can use later if I wanted to build another social networking site. And I've got other projects in mind already. 

The time with my kiddo has been really rewarding, too. He's still obsessed with Blue's Clues. He's also picking things up from other areas. He sings with me more often. He gave me kisses today. He pointed at his Buzz Lightyear pajamas and labeled the face parts for me. 

"Eyes"
"Nose"
..."Happy!"

Awwww. 

Thursday, June 4, 2009

Sudden onset of skills

These are my favorite posts. Mr Man put on his own pajamas, took off his own clothes, spontaneously got my attention by saying, "Mommy," and watered the plants. Um, not in that order. And he wandered into the bedroom and launched his favorite movie from iTunes.

So many of the things he does just happen when you're not looking, and then it's like he's been doing them for ages.

In possibly related news, he's become quite fond of Blue's Clues. He's started saying thank you for everything, and he occasionally "skidoos." I could think of worse shows. Blue's Clues overtly teaches self care skills and basic preschool concepts and even throws in some sign language.

I had no idea

Someone who's blog I'd been following for the last three and a half or four years turned out to be intentionally making her already medically fragile child sick. I had no idea. She's confessed, and they caught her on tape, so I guess the chances are good that she can get therapy and get help, but I doubt she'll ever be granted custody of her children. 

When I look at her blog now (or the archive of what she hastily tried to erase,) it's obvious she knew her daughter was going to keep taking turns for the worse. I don't know how long she was doing this, but there are so many chilling entries in retrospect. Things like this entry from last year:

Is there something I'm doing incorrectly? Why is it that one night she's fabulous, no problems at all and the next night we see numbers like that? I would love to be able to do another sleep study to see what is going on but as sure as we do she'll be having one of her good nights and probably never even need oxygen (we do have nights like this occasionally where I swear she'd be fine without it). Last night was fine, no problems, even when the cannula came out of her nose she didn't desat too terribly low. Tonight she's dropped to the 60's several times with the cannula in her nose! I swear as soon as her nurse walks through that door she'll totally change and start behaving

Yeah. Coincidence that she improves when the nurse shows, or maybe not. It makes me wonder how long she'd been doing this. And why. Her daughter had a very rough NICU experience that it would have been hard to fake. She was told multiple times that she probably wouldn't make it. Did the anticipatory grief finally drive her over the edge as her daughter improved until she worked to finally get the loss over with? Did she just get used to the constant level of attention with a sick baby and a blog? Did she want more presents to get sent to her by strangers reading along? I don't know. Whatever it is, she needs a lot of help. I hope she gets it, and I hope her children are kept safe.  

Friday, May 29, 2009

The truth, it burns...

The Onion has a good article showing responses to science arguments from a vaccine-denier's perspective. 

Thursday, May 28, 2009

Autism in babies

So this is hardly conclusive proof or anything, but it struck me as I was going through some old videos - my son really never was good at that whole eye contact thing. Here's a video I made a while back to show how to fold cloth diapers. I shot two takes. The half a second where he glances in my direction is the most eye contact he makes in either take, and I'm not sure he ever actually looked at my face. 

It could be typical behavior for the age. I'd certainly have told you it was back when I shot the video. But now - not so sure.   


Wednesday, May 27, 2009

AAC in Your Pocket

Remember how I was wondering why nobody made a simple software solution for AAC using modern, cheap hardware like netbooks? Well, it seems someone has. Proloquo2Go is a $150 software app for iPhone or iPod Touch w speakers.

This is awesome. It won't help my son - he's still a bit wee for something that sophisticated (and easily broken,) but it looks awesome for when he's a bit older if he still needs AAC.

Oh, and it looks like there's another one, iConverse, but it's slightly less sophisticated. It's also considerably cheaper.

Feh

So I'm talking with someone who has children about to enter college soon. She earns about twice what I do, since they have a two income family at this point. She's complaining that the selective admissions schools her kids want to attend will mean she'll have to come up with an extra $25k a year to pay for them.

I sympathized, since that's about what it would take to give my kid the recommended level of intensive therapy he needs. She then said, "Yeah, but my expenses are not optional." Yes, because paying for Princeton is not optional. Obviously. And supports for the cognitively disabled are just nice perks. Ugh, people suck sometimes, and they don't even realize why.

Sunday, May 24, 2009

Stroller


Just got back from a weekend trip, and the boy spent the entire time in the jog stroller. Eventually we'll probably get a special needs umbrella stroller just to get the higher weight limit, but for now, our jog stroller does the job. It's a little less maneuverable in tight spaces, and it doesn't fold down as small, but it makes up for it in comfort.

King didn't want to leave his stroller, even to eat at restaurants, even to play with toys. Several people assumed he was in a wheelchair, which provided a few teaching moments about autism. But he was more than content to remain there and protested whenever we tried to unbuckle him anywhere but the hotel room.

Thursday, May 21, 2009

College Fund

The estimate was a little higher for the AAC device, since it includes the software, strap, and other stuff to make it actually work. We can absorb it, but it will mean we may have to sacrifice other things along the way, and right now I'm still waiting for my job contract for the next year. I don't think I'll be out of a job -- I just don't think I'll be getting a raise. If I can convince grocery stores and utility companies not to raise their rates for the whole year, I'll be golden. 

My husband mentioned the AAC device to his dad, and my FIL said that if insurance and the school district don't want to pay for it, he will. He said they'd been stashing away a college fund for the kids. 

If he learns how to functionally communicate and is able to handle it, I think we'll figure out how to pay for college when we get there. 

Wednesday, May 20, 2009

AAC






















So the university got back to us with their recommendations on an AAC device. 

They recommended the SpringBoard Lite.
Now we get to figure out how to pay for it. They're going to bill our insurance and take the rest of our Medicaid, and then I think we'll discuss things with the school district.  

You know, I really wish I could just buy software and laptop. Both are cheap enough that it ought to be possible.  In one of my fantasy careers, maybe that's what I'll do - make software mods for laptops. You could take old tablets and convert them to AAC devices running modified Linux. 

Tuesday, May 19, 2009

Why Wolfram Alpha Sucks

Wolfram Alpha is this new computational search engine that is supposed to be finding answers to search queries by searching through a curated list of sites. Rather than showing you sources, it shows you the results. Pretty cool, right?


autism | (psychiatry) an abnormal absorption with the self; marked by communication disorders and short attention span and inability to treat others as people


Yeah, thanks. That's ever so helpful. I'm sure that's exactly what people searching for autism want to see. Add vaccines to the mix, and it doesn't know what to do with your search query at all. 

If I want to find out why the sky is blue or how far Mercury is from Venus, it's all over those answers, though. 

| current distances | light time Mercury to Venus | 0.406 AU | 202.6 s

Maybe in the future it will be the awesome research tool they claim it will be. 

Friday, May 15, 2009

Jenny McCarthy Is Full of Poop

Warning. This is a gross post. 

Ok, so I read Jenny McCarthy's blog over on Oprah's site, and it's pretty much as vapid as I thought it would be. A recent post illustrates this about as well as anything. She waxes poetic about poop. About how she regularly has her son's analyzed, I guess so she can have an OCD meltdown about all the bugs that are in everyone's poop.

Seriously? That's what poop is. That's why you wash your hands after you come in contact with it. It's full of bacteria. That's normal. It's true of everyone's poop. And if it's not, you're in for a world of hurt, 'cause you've killed off things that help you digest. Sheesh! 

I guess that's a big thing in the woo-sphere now, though, to be convinced that some product is clearing your poop of all the hordes of hidden parasites. Someone even once linked me to some forum where they actually *gag* examined the stuff with a pokey stick to see what all imaginary critters from the black lagoon they were killing off. 

Anyway, she was shocked to find out her poop was just as full of yeast and bacteria as her son's. Gosh golly gee, it couldn't have anything to do with that being normal, ordinary, everyday poop, now could it? It must mean she should immediately consume evil big pharma products that kill yeast. (You see, big pharma is ok when they kill naturally occurring internal flora, and it's ok when it paralyzes part of your face to hide wrinkles from all the chain smoking you used to do, but it's not ok if it saves the lives of children from measles. )  Everyone clear?

Anyway, who does this? Seriously. I've heard about taking a crap all over the blog, but she's doing just that literally. I bet her tweets about crapping are just as entertaining. That woman craps pure yeast and bacteria infested gold. Speaking of gold, this post on it was hilarious

Let's finish up with a song, shall we?


Thursday, May 14, 2009

Legos by the Pound

So there comes a time in many a young autistic boy's life, when other toys cease to amuse him. He must move on to Legos. I swear, I have friends who should just buy stock in the company. Their kids can quote kits and prices and only want one thing for Christmas. 

Anyway, King's been playing with Legos, and Princess Pea digs them just as much, so we've decided to put the Mr Potato Head kits, wooden blocks, peg puzzles, and other toys that aren't as fascinating in the closet for a while. Maybe they'll come back. Maybe they'll go to the preschool. We'll see. 

Turns out they sell Legos by the pound on eBay, so there's a nice bulk package heading our way. I hope the parts don't all suck. His OT was surprised he was using regular Legos at this point, but he's able to handle them pretty well. So fine motor skill builder, yay. May very few of them end up under our feet. 

Monday, May 11, 2009

Now this looks promising... an educational summer

I hadn't seen this before. Mrs Riley's PageBuilder.

Instant visual support builder. Very helpful. Reasonably priced, too. I tried it out on preview mode last night, and it looks like it would do exactly what I wanted it to do. Except change from squares to business card templates. Sigh. 

My husband is now insisting he can do the same thing for free using Avery templates and clip art. He's stuck on the templates because he wants to use up the 23432432432 stacks of business card paper we have but haven't yet used. 

But he's digging the idea of a visual weekly planner for the summer, so if he wants to do the work and is willing to use the system, he's welcome to do it however he'd like.  Plus I secretly suspect it will make him more organized to have a visual schedule with things like back yard play and craft time written into the day. 

We found a magnetic white board at Target for easily a quarter of the cost of one over at Office Depot, and the plan is to use magnetic business card backs we also have on hand to tack the items to the schedule.  I'll resist the urge to smuggle sarcastic lolcat captions into his day.   

Sunday, May 10, 2009

Funding? What funding?

My state decided it was ok to take all the small grants from families and increase the years long waiting list for medicaid waivers. And then they cut public school funding.  Awesome. You see, it's a recession, and everyone has to make a few sacrifices right? Because being on a waiting list for several years wasn't apparently a sacrifice and everyone unable to get waivers got the small grants for wasteful government spending on partial payments for things like AAC devices and wheelchairs. Who needs those?  

Oh, and that was the one that had matching federal funding. So everything they take away has bigger impact than just the funding they saved. Sweet. It's a twofer. 

I'm just a little pissed at this right now. I was hoping when I originally heard the news that they'd shifted funding from the grants and were instead using it to reduce the waiting list. It would make financial sense, since the matching funds would increase the impact of every dollar they spent. But no, it was apparently just dump on the disabled week. 
 

Monday, May 4, 2009

Jay Turnbull

Jay Turnbull died in January at age 41 of an unexpected heart attack. That part is not as important to the story as his life is. You see, Jay faced multiple disabilities that would ordinarily meant that his life was spent mainly inside some sort of sheltered group home or cared for full-time by a family member. That's not what happened. 

Jay worked at a real job and earned actual income, not the pretend salary of group homes. He lived in his own home. He had friends. He had regularly scheduled activities and a social life. He was part of the community, not someone shut up somewhere behind closed doors. 

Jay was autistic and intellectually impaired. He had bipolar disorder. He'd been kicked out of a group home for behavior issues like biting, hitting, and choking. He was functionally illiterate and couldn't drive. Jay's mother was constantly told that he was "the most disabled" student in the class and reminded that her expectations were too high. 

I saw a presentation last week by Jay Turnbull's mother, Dr Ann Turnbull, and I'm still processing everything. I can't type without tearing up a bit. I'm still crying just a bit.  Forgive me if I get some of the details wrong. I'm going from memory. 

Basically, he grew up with some good and some bad educational experiences, and once he aged out of the school system, they put him in a group home. This was 20 years ago, and that was just what you did at the time. Well, it was a nightmare. He had horrible behavior problems there and they kicked him out of the home. They recommended a more restrictive setting, which was the alternative at the time. 

When his sister visited him in the hone, she was furious. She told her mom, "I don't want to live there. You don't want to live there. Why is it ok for Jay?" She also found out they were waking him up by squirting him in the face with a water gun in the morning. Does that sound like dignity and respect?

So they decided they'd work out a way to do better. She found a job for him at KU. She felt guilty about it at first, since she was using her position to find him a job, but then she realized lots of people find jobs through friends and family. He sorted recycling, delivered mail, did clerical work, and did other things they'd have to pay someone to do anyway. It was a real job. He needed a job coach, but he was able to do everything. 

She hired someone to take him to the gym to exercise, and from there it ended up working out that he'd regularly attend frat parties on campus. Yes, frat parties. His behavior issues were totally not issues when it comes to frat boys. Really, what's a little hitting and biting and inappropriate farting in a frat house? Do they care if you're flapping your hands or singing really loud to the music? They adopted him as an unofficial member, and after that he was given honorary membership to a different frat house in town. 

It was his frat brothers that ended up proposing the solution that got him a home. With the help of his parents (who could manage money and plan budgets, something he could not do) he moved into his own home. Several frat brothers became roommates. In exchange for free housing (and salary for his primary assistant,) they helped him with daily living issues like cooking and cleaning, setting up his budget, scheduling activities, and buying clothes. And they genuinely liked his company. 

That's something she stressed over and over. He was surrounded by people who genuinely liked him. Some roommates would come and go as they graduated and moved, but many stayed. He most recently had the same roommates for seven years. 

Meanwhile, he had time for activities, such as music therapy, speech therapy, yoga, and weekly massage, paid for with his medicare waiver. He rode taxis and then later the bus to work and around town. He regularly went places. He found fierce advocates in many places, such as the owner of a local restaurant who trained her staff on how to treat him. She told them that he'd always want to be seated in the same spot, so that's where they should seat him. That he'd always want spaghetti and meatballs and couldn't read the menu, but that didn't matter. They should always give him a menu anyway and take his order, just like they would any other customer.  

So one morning, Jay got up and told his roommates that he'd like waffles for breakfast. He went to the bathroom to get ready for work, and he died. The university published a statement mourning the loss of their longtime employee, not the part time worker who needed a job coach.

That, my friends, is dignity, respect, and inclusion. And exactly what we all want for our kids, no matter their level of ability. And that's what neurodiversity advocates are trying to say when they defend themselves against accusations that the movement doesn't include those with the lowest functioning level. 

Saturday, April 25, 2009

Bullying

I ran across this article, and it's disturbing me on so many levels. That poor child. He was 11. Eleven for Pete's sake! It breaks my heart, and it scares the hell out of me. 

He was bullied by being called gay. I don't know if he actually was gay, and it doesn't matter. What matters is that his mom and the school were aware of the problem, and it still continued. It continued to the point that a fifth grader killed himself. 

All of us with kids on the spectrum need to look out for this. Bullying is a huge problem for Autists, and it's ironically worse the more "high functioning" you are. I have a colleague with Asperger's who tells me he was beat up daily. Daily. He didn't understand why. Well, hell, I didn't understand why people picked on me, and I've got a bit of a leg up on understanding social behavior. 

Friday, April 24, 2009

Jim Carrey Talks Out of His Ass

Yeah, remember this scene?



It's being reenacted over at the Huffpo, only not as intelligently. 

Jim Carry decided to weigh in on the whole vaccine issue, since he's such a huge expert. Now, I've heard from other parents who are confused as to why I call this anti-vaccine, so I'll explain. Jim Carry's technique is what's known as concern trolling.  

He pretends to be on the side of vaccines with concerns, but the intent is really to get people to stop using vaccines. Some of his concerns are hyperbole. Some of them are outright fabrications.  No matter how many times he and Jenny McCarthy and their ilk say they're "not anti-vaccine," it's a lie. Repeating the phrase doesn't make it true.  

Apparently back in February, CNN commentator Campbell Brown said:







"As a mother, with a second child on the way, I believe this is vital to the safety of our children and must be said. The verdict is in. There is no connection between vaccines and autism. And it is time that all of us get our children vaccinated."

Seems a reasonable enough statement to me. But what do I know, I'm just a highly educated mother. It's not like I'm some famous Canadian actor or something.  

Carry's take on it:

But with all due respect to Ms. Brown, a ruling against causation in three cases out of more than 5000 hardly proves that other children won't be adversely affected by the MMR, let alone that all vaccines are safe. This is a huge leap of logic by anyone's standards. Not everyone gets cancer from smoking, but cigarettes do cause cancer. After 100 years and many rulings in favor of the tobacco companies, we finally figured that out.

Firstly, calling the Omnibus decision a "ruling against causation in three cases out of more than 5000" is disingenuous. What actually happened is that the lawyers representing all those claims found their three best cases, their three most clear-cut slam-dunk cases to represent the three most popular theories on how vaccines could cause autism. The three theories were:  thimerosal-containing vaccines cause autism, the MMR vaccine causes autism, or that the MMR vaccine causes GI problems (ie Wakefield's leaky gut theory.)

Not only did they present their three best cases, they didn't have nearly as much of a burden of proof as they would to scientifically prove MMR causes autism. They only had to show "50% plus a feather," meaning it was possible that the MMR could cause autism in the way they outlined, not that it was probable, not that it was the best theory around. They failed. The courts ruled that none of the three theories were at all plausible, and in fact “The evidence was overwhelmingly contrary to the petitioners’ contentions.”

So, Mr Carry, put a fork in it. It's done. Campbell Brown is right. 

But no, he goes on to claim that "no one without a vested interest in the profitability of vaccines has studied all 36 of them in depth." That's  a cruel thing to say to researchers who work to try and save the lives of children. If profit were the only motive, we'd have fewer vaccines. Medicines to try and treat infections are far more profitable.
 
Anyway, he goes on to smear anyone who works for the CDC and the AAP along with anyone who ever took research money from a pharmaceutical company.  And, of course Dr Paul Offit, because he once worked on a Rotavirus vaccine, which means he's tainted for life and unable to articulate any opinion on vaccine safety. 

Not only did I forget to wear my tinfoil hat, which I think is a requirement to truly understand this vast government conspiracy to vaccine injure children, but it overlooks the obvious and clear profit motives of vaccine opponents. Seriously. Wakefield anyone?  Geier?  
  
Carry also moves the goal posts and throws ADHD into the mix with autism as something that vaccines supposedly cause. That's handy, because if you add enough conditions in there, you'll eventually find a few that haven't had vast amounts of research done showing there's no connection to vaccines. 

Carry keeps up with the "too many too soon" argument, confusing children with dogs and some condition they supposedly get, claiming that since the US gives children more vaccines we must somehow be injuring them. (Except that we don't have a higher rate of autism than countries that vaccinate less often.)  Too many too soon is still an anti-vaccine argument, especially when you don't define which are too many and how often is too soon. The net effect is that parents will vaccinate less "until we know the answers,"  and we'll lose herd immunity on all vaccines. 

Then he tries for the "vaccines are full of poison" argument. He contends that vaccines are full of "aluminum, mercury, ether, formaldehyde and anti-freeze." Ugh. 

Ok, ethyl mercury has been removed from all vaccines except for the flu shot and trace amounts from manufacturing.  Aluminum? I really don't get tired of this one. Hello, you get exposed to so much more aluminum just from eating food. Opponents argue that "yeah, but you don't inject it into your body!" The aluminum in breast milk goes straight into a baby's blood stream from their natural open gut system. Formaldehyde is in our bodies, too. It's in the food we eat. It's everywhere. 

Ok, and ether and antifreeze? Please! There is not antifreeze and ether in vaccines. This part is straight Ace Ventura ass talking. 

For the love of  children, Mr Carry, please go back to making movies. You really are miscast when you try to play Dr Carry, Concern Troll.  Orac is so right when he calls him Fire Marshal Bill. You should his post on this, btw. It's brilliant. 

Fixating on vaccines as cause harms our children. It takes away from real research and it encourages parents to not vaccinate, which increases the risk that all of us will be exposed to vaccine preventable illness. 

Friday, April 17, 2009

Anniversary

One year ago today, my son was diagnosed with autism. It wasn't really as surprise at that point, since the appointment with the specialists had a six month waiting list, and by that time I knew what they'd say. 

Anyway, I thought I'd highlight some of the things that have happened in the last year:

My son can now:

Communicate in two or even three word sentences
Say words that are understood without signs and gestures to back them up
Repeat things after me
Pull his pants up and down by himself
Say "diaper" and pay attention to his toileting needs at all (still not toilet trained, but that will happen eventually)
Sing songs
Put together Legos
Zip up his own jacket
Sit in chair in class without constant prompting
Name members of his family and teachers
Sound out words
Clean up after himself

I know he can do much, much more. But those are a few things he can do. He's so much bigger this year than he was last year, and I'm sure next year he'll be leaps and bounds ahead of where he is now. Yay progress! 

Tuesday, April 14, 2009

Eating Opposites

It cracks me up sometimes how opposite my kids are in terms of eating habits. King loves food and will try a variety of items. Miss Sugar Plum Princess, on the other hand, prefers her carbs straight up. She'll tolerate a bit of veggie, but only if it's so covered in cheese that she can't tell its there, such as spinach artichoke dip. 

Went to the relatives for Easter, and the boy ate small portions of salad, deviled eggs, fruit, raisin bread, chicken noodles, green beans, etc. (and then probably snuck some M&Ms or something else with dairy in it, or so his diaper seemed to indicate yesterday, ugh.) And a few Peeps. 

The girl, on the other hand, had biscuits, bread, and candy, including most of the Peeps. Yeah. I suppose I might have gotten some cheese covered carb in the form of au gratin potatoes into her, but by the time the meal actually started, she'd filled up on biscuits. 

I have a friend who puts jars of baby food veggies in the spaghetti sauce to get some veggies into her picky eater. Anyone else have any picky eating strategies to share?

Sunday, April 12, 2009

Words Are Awesome

Quick note for some continued progress with King and talking. The other day we went out to dinner with friends, and he said hi to the waitress and thank you when she gave him a lollypop. Totally unprompted. I was impressed.  

When he was done eating,  he said "all done," and then he wanted to "wash hands." Yay. 

When we went home, my friend pulled out a camera. He stepped in front of the camera and said, "Say cheese!" He pointed out the "doggies" when the neighbor let hers loose in her yard, and we talked about the fire and how it was hot. 

He's really be echoing back new words when he encounters new things and using words appropriately. This is such huge progress. I don't know how his communication will look as an adult. He may still need some form of AAC for times of high stress, but I'm comforted to know he'll be able to use his voice some of the time.

Friday, April 10, 2009

Happiness

Today's thought brought to you by a radio interview about something entirely different. Listening to an Indian immigrant tell her story of coming out to her parents today, and something she said struck a cord with me. 

To paraphrase, all parents want their children to be happy. And they think the things that will make their children happy are the things that made them happy. Sometimes that isn't the case, and you just have to accept that your children may have very different needs entirely.  

Wednesday, April 8, 2009

Allergy Testing?

Yeah, no surprise here, those blood allergy tests totally over-diagnose allergies.  I know people who have them done and then end up with these gigantically long lists of foods - wheat, rice, beef, corn, soy, chicken, celery, apples, cheese (but not milk,) etc, etc.  And then they have to make all their food from scratch and carry it with them wherever they go. This is on top of the people who try GFCF diets. 

I'm reminded of this, because my son is allergic to dairy. When we first eliminated it from his diet, it just seemed like he was reacting to any amount of dairy, no matter how small. So we got rid of it all, and his symptoms (foul gas, foul poop) went away. Now we're getting to the point where we can challenge them a little to see exactly how far we have to go. 

So far, it appears that baked goods containing small amounts of dairy are ok.  Yay for hot dog buns. Yay for cookies. 

The other day we tried cheese. Gave him a slice of cheese pizza. Ok, I can definitely say that we won't be doing that again anytime soon. We changed foul pizza diapers the whole next day.  We might challenge him with lactase at some point. We'll see.  

Tuesday, April 7, 2009

And Then I Cried

The other day I was at a meeting for a committee I'm on. We have a member who is mentally ill. It's not autism, and he is under the regular care of mental health services. He's mostly harmless, but he has some behavior issues. 

When it was my turn to say something, I started crying. I just suddenly saw my son as a grownup with a room full of people deciding how to delicately avoid his less socially acceptable behaviors without rejecting him from the club.  I really don't have the answers. 


Friday, April 3, 2009

Why Jenny Pisses Me Off

First off, she gives an interview to Time which is full of the stupid. She now thinks it's mercury (which her son didn't receive) aluminum (can of soda pop anyone?) and the viruses in vaccines (oooh, you get those when you don't have the vaccine) that cause autism.

Next up?

If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles.
Uh, no. No. I'd rather my son have the autism, thanks. It won't kill him. Plus it's a false choice since, you know, vaccines don't cause autism.

She also thinks that autism is on the rise because schoolteachers (in her opinion) haven't seen so much of it. My autistic cousin got all the way to high school before his MR diagnosis shifted to autism. Perhaps we're just diagnosing differently? Nah, couldn't be. It's not like the rate of kids in special ed has remained relatively constant during this massive "epidemic." Oh wait, it is.

Oh, and she refers to autistic children as shadows. You know, because they don't actually exist as full people? Wha? That's almost as offensive as her co-author's reference to them being soulless and sucking the marrow out of family members. Quit calling my kid a non-being.

But the real cherry on the sundae is her acceptance of diseased and dying children as collateral damage in her war for "safe vaccines."
I do believe sadly it's going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it's their f___ing fault that the diseases are coming back. They're making a product that's s___. If you give us a safe vaccine, we'll use it. It shouldn't be polio versus autism.
It isn't polio versus autism. It's your stupidity versus polio! And there isn't a thing you could do to vaccines that would make them safe in an anti-vaxxer's mind. Not a thing. If you get rid of the mercury (which was done before her son was born), it must be aluminum. Or it must be the frequency. Or it must be the viruses in the vaccines. And if you show them study after study, they'll find a way to refute them as being "biased by big Pharma" or the CDC (since the government is in on the conspiracy.)

In other words, it's an irrational fear that the stabby thing that made my baby cry must also have damaged him in some other way.

I've heard people claim that McCarthy is "getting the word out" or "doing a lot for autism awareness." No. No she isn't. She's doing a lot for autism fear. There's a big difference.

Wednesday, April 1, 2009

Jenny @#%$@#$#@ ing McCarthy

Gah. So pissed off at her.  She's promoting her latest book, and apparently she thinks it's just fine and dandy that children will die from not being vaccinated. What an awesome attitude. 

It's late, but I feel some T-shirts coming on. 

It's that time of year again...

Time to be "aware" of autism. I'm aware of it a bit more often than once a year. I'd love to move beyond awareness and toward understanding. And services. 

Peter Bell said Autism Speaks was pulling some stunt in Central Park. I hope it doesn't involve vaccines. I really don't want the take home message about autism to be that parents are loonies. 

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

Siiiiick

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. 

Friday, February 20, 2009

Eggs and the power of no

I've been doing a lot of choices by asking twenty questions. Sometimes King knows the words, and sometimes it's a matter of finding the thing he doesn't say no to. 

This morning for breakfast. 

He followed me into the kitchen and said what sounded like "cup,"  but he said no to all the cups I offered. I lifted him up and he picked out a plate. I asked him what he wanted on the plate, but he couldn't say. Finally I pulled out a pan and asked if he wanted eggs. Yes. He wanted eggs.  He practiced saying and signing eggs while we cooked them.   

It's as if he's finally hit that "language explosion" that most kids get at around age two. He knows what language is. He knows he needs to learn it, and he's taking lots of notes. Sometimes literally. He's taken to writing "BINGO" on his magnadoodle lately to get us to sing along. 

Tuesday, February 17, 2009

This Question Has Been Asked and Answered

Ok, I love her. Well, for this anyway. She made a controversial comment on that whole Autism Every Day video that I had a lot of problems with, but on this? She's totally right.

Alison Singer says she left Autism Speaks because they kept using their limited resources on vaccine research instead of focusing on things that actually had some potential. I've had this frustration, too. It's dead, Jim!

Here's another story. A few weeks ago, Jodie went to the pediatrician. She had Tdap [tetanus-diptheria-pertussis] vaccine, a flu shot and a vaccine against meningitis. The next day her teacher remarked to me that Jodie was much more attentive and participated in class much more than usual. Her gym teacher said that for the fist time Jodie was able to compete in an obstacle course. Should I start pontificating that vaccines are a great treatment for autism? Of course not, that's not science. That's called coincidence. Here's the full Newsweek article.

Monday, February 16, 2009

Sewing anxiety

Princess is good at sewing. I mean, she's seven, so she's not making prom dresses or anything yet, but she's very good at sewing for her age. She stopped sewing for a while, and she kept telling me that "sewing was boring." She'd get exited about wanting to sew something, but would most likely not start the project, would ask me to do it, or would declare it to be "boring" the first time she ran into any snags. 

Yesterday we finally got over some of that hump. Really what was going on was that she was worrying too much about making mistakes or poking herself with a pin, and it would distract her to the point where she couldn't actually do any work. I also suspect she's like her mom and gets bothered when the project seems overwhelmingly big. 

Anyway, she wanted to sew a fairy dress for a book report. I traced off the simplest pattern I could - basically  a long T-shirt, so there were only four pieces to sew, and I hemmed the collar for her. She struggled with it at first, but when she finally got into sewing, she decided that "sewing makes my brain calm down!"  When she'd start to worry about the next step, she decided that "my brain is too worried - I need to sew to make my brain calm down." And she did. And she finished her project and asked if she could sew some more tonight. 

Blue!

King is in a total no phase, which is mildly annoying in two year olds and a big relief in four year olds that previously weren't talking. He's even stopped his scripted response to "Are you all done?"  

It used to be that we'd ask him if he was all done, he'd automatically say "yes" and then get upset that his things were taken away. Then he moved towards saying yes and then shoving you away to keep working on whatever it was. Now he says no and runs back to the table to continue with his activity. 

Last night he pointed at a patch of blue wallpaper and clearly labeled it as blue. Yay for colors. Well, one of them, heh. And then he said Blue's Clues, so he's associating the word Blue with something besides one specific shade of blue, so good there. When I try with other colors, he's associating them with fruit and doesn't label the color, except for orange, heh.

And then earlier he wanted to sing Bingo, so he brought out the magna-doodle. I pretended to not understand his intent and wrote "CAT" on it. I swear he said, "Stupid, no, stop!"  Wow. Ok, then. Back to writing BINGO. 

Thursday, February 12, 2009

Kirby also needs to go away

Ok, here's the story. Olbermann does his "worst person in the world" stick. 





It's Wakefield! For forging data. And deservedly so. 

But noooo, that's so not fair, since according to David Kirby, (a man with a huge financial interest in maintaining vaccine paranoia) Brian Deer, the reporter who broke the Times story, was the original complainant in the medical review of Wakefield and this fact was not disclosed in the article.  

Which prompted Olbermann to name Deer the next day:

Well, aside from the fact that I wouldn't be bothered by a reporter calling the police on a criminal and then later reporting more about the bad deeds of the criminal, it turns out that the accusation was flat out not true.  Deer didn't make the complaint. As is easily shown with the power of a bit of Google-fu. Sheeesh. 

And Kirby wrote Evidence of Harm, one of the reasons vaccine paranoia jumped to the US.  I didn't see Kirby post this conflict of interest over at Huffpo. I just saw links to his book. 

Oh, and in case you're not tired of Kirby and Olbermann smackdown, here's some more

Wakefield Needs to Go Away

Andrew Wakefield has pissed me off for years. Why? He's responsible for the whole vaccines-cause-autism paranoia. 

Once upon a time, a researcher named Wakefield got paid by a legal team to help them in their case against the MMR vaccine. At the same time, and quite probably for the same reason, he decided to do a study on his hypothesis that autism was caused by measles lingering in the "leaky gut" of a subset of kids. He took 12 kids, some or all of whom had parents involved in the lawsuit by the legal team, and put them in his "study."  

"Why that would be unethical" you might say. Why yes, it would be. It would be even more unethical to give these children, ages 3-10, unnecessary medical procedures such as MRIs, colonoscopies, and spinal taps, now wouldn't it? Especially if you didn't quite actually have ethical approval for this study.  

And then it would be even more unethical if you were to not disclose your relationship with these children and the full source of all your funding and then publish your paper in the Lancet. And yet, that's exactly what he did. 

Oh, it gets better. He claims to have found measles in 8 out of 12 of those kids. His assistant didn't see it, but maybe his assistant just didn't want to believe as much as he did.  That's the sort of behavior that gets you brought up on charges of professional misconduct. Which he was.

Recently he's been brought into the spotlight again by accusations that he also outright falsified his data

But, oh, the poor Wakefield. Why won't Brian Deer leave him alone? Maybe because Wakefield's theories are totally bogus?

Monday, February 9, 2009

Seeing the Good in the Meltdown

So yesterday was a bit of an up and down day. King's been ill, and I think he's still a bit cranky. We had some kettle corn earlier in the day, which he loved, and he kept asking for more "pop." 

The last time around, he comes over and asks, clear as day, for "more popcorn." I would have loved to have rewarded him, but we'd all just finished the bag. I told him we were all out of popcorn. Instant meltdown. 

I suppose I could be bummed, but I'm not. Not only did he ask clearly for something, he understood me when I told him we were out. He wasn't sad because he wasn't communicating. He was sad because we didn't have any popcorn. 

That's big progress. 

BTW, he had a bowl of Cheerios later on, and that turned out to be a just fine substitute snack for him.