6/30/2012

Growing Up on Me

 Bobby is losing his boyish look.
 The girlies are getting lovelier by the day.
And Lily keeps growing TALLER by the minute.
 A proud dad and his girls.
 
She's nearly there; soon she'll be looking down at me. 
Sweetness.

6/25/2012

When a Number is Just a Number, Or Why I'm Sticking with BAPpy

While browsing facebook, I ran across a friend's posting of a link to a diagnostic test for autism and Asperger's that I hadn't run across before,The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R). According to the abstract,


The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a valid and reliable instrument to assist the diagnosis of adults with Autism Spectrum Disorders (ASD). The 80-question scale was administered to 779 subjects (201 ASD and 578 comparisons). All ASD subjects met inclusion criteria: DSM-IV-TR, ADI/ADOS diagnoses and standardized IQ testing. Mean scores for each of the questions and total mean ASD vs. the comparison groups’ scores were significantly different (p < .0001). Concurrent validity with Constantino Social Responsiveness Scale-Adult = 95.59%. Sensitivity = 97%, specificity = 100%, test–retest reliability r = .987. Cronbach alpha coefficients for the subscales and 4 derived factors were good. We conclude that the RAADS-R is a useful adjunct diagnostic tool for adults with ASD."


The 80 questions will undoubtedly strike those familiar with autism as being somewhat stereotypical; there are no options for "sometimes," either. The choices are now and as a child, now as an adult, only as a child under 16, and never. Sometimes none of those choices is quite right, and sometimes some of the questions are frustrating, like "The phrase 'I've got you under my skin' makes me very uncomfortable." WTF? What if it only mildly confuses me? Why  would it make me very uncomfortable? Or "I feel very comfortable with dating or being in social situations." Really? Not every neurotypical person is going to feel VERY comfortable--it depends on all sorts of things as to what one's comfort level will be and much of that has nothing to do with being on the spectrum.

According to the journal article, which examined the international validity,

"A RAADS-R score of 65 or greater is consistent with a clinical diagnosis of ASD. A RAADS-R score of 64 or lower is not consistent with a diagnosis of ASD (sensitivity = 97%, specificity = 100%). It must be emphasized, however, that if a subject has a score of 64 or lower but clinical judgment indicates that ASD is present, the clinical judgment should take precedence. This is due to the many limitations of self-rating scales that will be elaborated upon in the discussion section."
So, 65 or higher? Hmm. Before I read the study, I took the test. I answered the questions honestly as best as I could, having no idea what the cutoff scores were for autism. My score? 107.

The scale has several subscales: language, social relatedness, sensory/motor, and circumscribed interests, and I was over the threshold on all of them, although just barely on the language subscale and social relatedness. Those were surprising, although I was not surprised that I was high on sensory/motor and circumscribed interests.

What do I do with this new information, that I score above the threshold? Nothing. Do I think I'm suddenly on the autism spectrum or that I've always been and now know just because it scored more than high enough? No. 

I've long embraced my BAPpiness, and this test result doesn't change anything; it doesn't make me view myself differently. I've watched my children grow, seen how their traits and mine, Rick's and other family members are all so similar. I know my kids get it from us, that genes and environment have mingled in such a way that they qualify for and need the diagnosis to get the assistance they need, that these traits rise to varying levels of impairment in the three of them. It also leads to tremendous strengths, too, though. 

So even though this test, and others like the EQ/SQ/AQ suggest that I'm highly BAPpy (and sometimes tipping over the BAPpy line), I also know that I don't need the label and if the DSM criteria itself is rigidly adhered to, I don't qualify. Being BAPpy is a good enough explanation for how I see the world differently from others--seeing myself in my kids, there's a sweetness there that's also a little bittersweet. They've got some of my traits that I'm glad to see them share and others that I know cause them difficulty, and I'm sorry they have to go through some of the same things I did and still do, but because I have and do, I can help them along, give them tips and be there to understand when it's all too much.

I think we can get hung up on labels in our search for why we are the way we are, in our attempt to find our own kind. I don't need a label to do that; I don't think that label is appropriate when disability is not a fundamental part of it. But that's my own opinion, and I respect that other people have other opinions on whether autism ought to be a personality type or a disorder. 

I don't know where autism will ultimately land, if people will win the day and move it to a full, inclusive spectrum that incorporates us BAPpy people on the light end and those with severe autism that leaves them significantly disabled on the other end--if we'll find a way to discuss this in such a way that the spectrum is recognized. Heck, maybe BAPpy will catch on, and all those people who are not impaired by their cluster of traits can come over to the BAPpy side and leave autism to those who are seriously and significantly disabled by the differences in their neurology. I know for me, though, that I cannot and will not co-opt a label that is still recognized by the medical, psychological, and educational fields as a disability; it would be a disservice to my children who are hampered or disabled by their autism to say that I, too, am autistic. 


Me and my girls.


6/24/2012

Tripping the Same Neural Pathways

Dude and Frankie, 2011

It's been over a year since we said goodbye to Ibit, and Dude has grown into a fine cat who reminds us all a great deal of Ib.


Sweet, Dude.
It took many months for it to not hurt to see Dude and not think of Ibit with the pain of loss, but we've gotten there--gotten to the point where we can see Dude and feel joy that he looks so much like Ib, is the boy's cat like Ib was. It's good. 

We're only five months without my Frankie, though, and our house is filled with pictures of both him and Ib. Their pictures are the first thing I see in the morning and the last I see as I turn out the lights--wonderful pictures with their sweet eyes looking directly into the camera. I feel comforted that the memory of them won't grow dim.

Jackie and Danny are the two brothers we brought in a few days after losing Frankie, and they've been settling in, finding their place in our household and our lives. They're pretty darn comfortable, as you can see, and we all love them dearly. They are sweet boys, and Jackie trips the same neural pathways Frankie did, just as Dude trips the same ones Ibit did. It doesn't stop the grief, or keep us from missing their predecessors, but it soothes it, the love coming naturally and invoking the memory of Frankie and Ib. I think that's a good thing, to be so reminded of those we've loved before, so that it blends into the love we have for those who come new into our lives and make room for themselves, fitting in seamlessly.
Jackie and Danny.

Frankie's ashes have been on the top of the fridge since February, and instead of seeing them there with a pang of heartache, I was touched last night to see Jackie lying next to Frankie, so to speak.

Jackie next to Frankie's ashes, 2012.


 Jackie has made himself at home on my lap, as has Danny from time to time, and looking down at him lying there I find comfort that my lap is once again filled with a giant orange cat.
I take delight in watching Jackie wedge himself onto the window ledge, one of Frankie's favorite spots.

And in watching him steal Rick's chair and play with Rosie.

And stop and wash himself when playtime is over.

No, Jackie can't take Frankie's spot in our hearts, but he (and Danny) can share that spot, just as Dude shares Ib's spot. Joy mixes with the loss, and it is all good. Each kitty snuggle is precious because we know how fast our companions move through our lives, how suddenly they can be taken from us.

Rick and I are in the middle of our lives and have gone through so many beloved pets, and we know that we will have many more companions in the decades ahead, but I think we've learned that there should always be room for a great ginger cat to sit at one's feet, to steal one's chair, and to perch on top of the refrigerator and look down at us, and a grey tabby to warm himself in the sun by the door.


6/21/2012

Not What I was Expecting...

I had (don't ask me why) a mental image of what this summer would be like. Has it been what I thought it would be? No, of course not; it never is.

This has been a year of changes--I know, it sounds stupid to say that when every year is full of changes, but you have to understand that for a long time, because Bobby filled all of my days, as I worked with him one--on-one, year after year, that it felt like we lived in a time warp, or our own little bubble. Yes, we moved every three years or so to a new army post, so there were changes outside the bubble, but with the two of us, there weren't a lot of changes. We worked on the same basic skills for ten years--working out of the same workbooks, bought and rebought. Progress was minimal when it came to academics and Bobby's ability to understand the world, and so I got used to tiny changes stretched out over years, not the giant leaps of growth that my girlies make.

Bobby's life skills have grown over the years, but in fundamental ways we remain in the bubble, and it can be difficult, especially when things outside the bubble change in dramatic ways, to remember that Bobby, although a man and a sweet, wonderful, funny one at that, has challenges that he has yet to surmount. It is too easy to look at him with his scruffy mustache and assume that he can handle anything thrown at him, and then of course, end up frustrated because the truth is that he can't (who can?). He tries his best, he's always game, but then we end up both just irritated at each other and the situation. It's unfair to him. It's difficult to find that precarious balance where we push for the building of new skills without pushing too much, too far, allowing him to experience as much independence as possible while still making sure he's an integral part of the buzz of family life and the work it takes to keep a home functioning. I think we do well most of the time; he loves his volunteer work at Meals on Wheel. He never complains about being asked to do something, although it may not get done. He smiles a lot, laughs a big, boisterous laugh when he knows something is funny, even if he's not quite sure what makes it funny. He's opinionated, stubborn and gets outraged over injustices (so the news isn't on a lot here). He has a sweet, honest, open soul. He's as good a person as you will ever meet. So it makes it all the harder when we have our occasional hiccup, and I get angry or hurt over something that he says or does, when he meant no harm. And then I think of the wider world and will people give him the benefit of the doubt, stop and consider whether he understood the connotation of what he was saying, ask him for clarification, or if they'll jump to conclusions and that will be the end of that?

I watch him interact with the kitchen staff at MoW when I drop him off and pick him up, and in the year he's been there, he's loosened up, become comfortable joking with them, laughing, talking. He's at home there, comfortable in his skin, and it's so damned good to see that each day my eyes spill over with gratitude, you know? He comes out smiling, talking quietly to himself, his eyes darting up to look at me as he makes his way to the car and then he's looking down again, talking to himself as he gets in. Not once, not a single solitary time, has he ever been upset when leaving--they've all been good days for him, and that's such a blessing, such a gift, that I want to make sure that he feels the same way about home--I don't want to lock horns with him. I don't want to discourage him. And again, I think that, other than the occasional issue, I don't, but those instances where we ask for more--I hate that--those times where I am hurt or angered by his words when no harm was meant--I linger over those, feeling guilt for longer than is useful or reasonable. I want to hold him accountable only for those things he meant, not the unintended miscommunication, and that means taking time to look at a situation closely and carefully.

So much is not what I expected...we've eased back on some things at home--Bobby's time shouldn't be structured by others all the time. We started working with Lily, to build her life skills at home, and whereas Bobby still struggles with some tasks, Lily, bless her, took to them and learned them so fast that she's now doing the laundry, vacuuming, putting up her clothes, helping her sister put up hers. She's lightened my load and Bobby's by picking up some of these household chores. Where it took years of work (and still requires reminders each time) to get Bobby where he could do these things, Lily learned in the space of a week. We're working with Rosie to build her life skills, too.

Learning how to navigate the different skill sets, strengths, challenges of all three of my children is always interesting. Yes, they are all on the spectrum, but that doesn't mean they share the same issues or the same strengths. I am constantly challenged to keep up with each of them and recognize that change comes in its own time and its own way with each of them.

So, no this summer is definitely not what I was expecting for several reasons, but it's filled with treasures--watching each of my children find their way, find ways to maximize their strengths, watching what can happen when I step back and give them the opportunity to try new things. It's also been challenging and frustrating, at times, and we're only one month into the summer "break"; I can only imagine at the next two months and what growth they will bring. I'm certain that whatever happens, it won't be what I was expecting, though.

6/20/2012


Note to Self

Do not argue with realists, absolutists, or apologists. Just ignore and move on. Or leave cryptic postings so that people reading it will wonder if you are talking about them.

What Part of Industrial Bleach Do You Not Get?

MMS ( Miracle Mineral Solution) is getting some much needed attention in the skeptic community, as well as the autism community. Created by a man named "Bishop"Jim Humble, who runs his own Genesis Church, it is a potent industrial bleach when used as recommended by Humble both orally and rectally can cause serious side effects, serious enough that the FDA has issued a strongly worded news release:


FDA NEWS RELEASE

For Immediate Release: July 30, 2010
Media Inquiries: Elaine Gansz Bobo,             301-796-7567      elaine.bobo@fda.hhs.gov
Consumer Inquiries:             888-INFO-FDA      
FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS)
Product contains industrial strength bleach
The U.S. Food and Drug Administration is warning consumers not to take Miracle Mineral Solution, an oral liquid also known as “Miracle Mineral Supplement” or “MMS.”  The product, when used as directed, produces an industrial bleach that can cause serious harm to health.
The FDA has received several reports of health injuries from consumers using this product, including severe nausea, vomiting, and life-threatening low blood pressure from dehydration.
Consumers who have MMS should stop using it immediately and throw it away. 
MMS is distributed on Internet sites and online auctions by multiple independent distributors. Although the products share the MMS name, the look of the labeling may vary.  
The product instructs consumers to mix the 28 percent sodium chlorite solution with an acid such as citrus juice. This mixture produces chlorine dioxide, a potent bleach used for stripping textiles and industrial water treatment. High oral doses of this bleach, such as those recommended in the labeling, can cause nausea, vomiting, diarrhea, and symptoms of severe dehydration. 
MMS claims to treat multiple unrelated diseases, including HIV, hepatitis, the H1N1 flu virus, common colds, acne, cancer, and other conditions. The FDA is not aware of any research that MMS is effective in treating any of these conditions. MMS also poses a significant health risk to consumers who may choose to use this product for self-treatment instead of seeking FDA-approved treatments for these conditions. 
The FDA continues to investigate and may pursue civil or criminal enforcement actions as appropriate to protect the public from this potentially dangerous product. 
The FDA advises consumers who have experienced any negative side effects from MMS to consult a health care professional as soon as possible and to discard the product. Consumers and health care professionals should report adverse events to the FDA’s MedWatch program at             800-FDA-1088       or online atwww.fda.gov/medwatch/report.htm.
Yeah, I bolded and made the really relevant part red because it blows my mind to see MMS apologists say it's not a bleach and that it's no big deal. That's bullshit. This is not the FDA overreacting. This is not science bloggers overreacting. This is not over-the-top rhetoric.

Orac covered it several posts*, Emily Willingham wrote about it, Autismum wrote about it several times, Todd Drezner wrote about it, Science Mom really laid down her opinion on parents subjecting their children to this "treatment" and causing vomiting and diarrhea child abuse. iO9 covered it:

"Someone is not only promoting a treatment of bleach enemas to treat autistic children — every two hours, for 72 hours, every possible weekend — but they've started a religious organization to promote this, with 'bishops' and other church officials touting the effectiveness of the Miracle Mineral Solution."

Even parents who are using this product are noting the side effects; it doesn't keep them from doing it to their children, but it's complete bunk to suggest that there's nothing wrong with using this product:

"It's been 3 weeks since I started my son on MMS. I began with 1 drop in the p.m., then a few days later added an a.m. dose of 1 drop. He reacted strongly to this with increased diarrhea, gas, yeast symptoms, and finally vomiting."
Yeah, experimenting on your children with industrial bleach (whether you like it or not, it is industrial bleach--the FDA has said so, but again why would we expect people who excuse using a mining chelator on their children's breakfasts to have an issue with industrial bleach?) is NOT OKAY. Just because you can buy it on the internet and a kindly older gentleman who calls himself a bishop and promises it will cure everything DOESN'T MEAN IT IS SAFE.

It's warranted to be a bit forceful after reading parents posting about how sick it made their children, and yet they keep on DOSING their kids with the stuff, because all that misery means their kids are getting better.

That's crap and reasonable people know that.  Reasonable people are not apologists for MMS or the people who blindly use it. Of course, reasonable people don't dismiss FDA warnings as irrelevant and probably inaccurate.

Reasonable people don't write posts like the one Humble has on his forum, using ad hominem after ad hominem, poisoning the well, and personal attacks, along with appeals to popularity:

If the medical establishment diagnosed my son or daughter with Autism, the only documentary I’d be producing is the one that handed neurotoxic needle-pushing poison peddlers their backsides. I’d then be off to looking under every rock for my child’s cure (because I know they wouldn’t be); and if I found it, I’d produce another documentary that handed them their frontsides. This would be my only mission in life - if my son had Autism.
 ...
 Much unlike Drezner, we will be contacting the parents of the children that have reportedly made significant improvements using MMS, and we are currently collecting case by case clinical data showing MMS does what those singing its praises claim. 
The thought crossed my mind; who’s underwriting Drezner, someone with ties to the FDA or Big Pharma? In a huge effort to not allow myself to be given over to absolute speculation like Drezner, I will wait and report my findings when they become factual.

Yes, because parents who do not opt to use products the FDA has warned against, that other countries have banned, are against helping their children overcome the challenges that their autism presents them. And they totally must be being paid by the FDA and Big Pharma.

I call bullshit.

As BenMC noted on the blog, Arrow Through the Sun, this clip from The Soup is a perfect response:


*
http://scienceblogs.com/insolence/2012/05/25/selling-bleach-as-a-cure-for-autism/
http://scienceblogs.com/insolence/2012/06/11/miracle-mineral-solution-mms-and-autism-apologists-strike-back/
http://scienceblogs.com/insolence/2012/06/13/will-the-autism-biomes-underground-renounce-using-bleach-to-treat-autism/
http://scienceblogs.com/insolence/2012/06/12/best-retort-ever/
http://scienceblogs.com/insolence/2012/06/18/mms-apologists-strike-back/

6/17/2012

Rambling Cognitive Dissonance, or why compassion will save us (or where I go all zen on your ass)

I was looking through the feeds on the directory, as I do everyday, and reading the various thumbnails, clicking through on those blog posts that I thought would be helpful to read, and I was struck again by the diversity of bloggers--the various opinions, beliefs, and experiences of them, and how it can be a bit disconcerting to be hit with this huge spectrum (pun intended) all on one page. 

Some of the parents write about recovery and how slow it's going. Some write posts in support of Wakefield.  Others write about triumphs, about fights with the school districts, about the heartache they feel when their child struggles. Then there are posts by autistic individuals sharing their experiences and their realities, often  arguing strongly and effectively that their opinions, their words, should matter when it comes to how others are discussing autism. 

The entire gamut of perspectives is there, and I try, each day, to read a few of the posts so that I can be reminded of just how diverse we really are in our experiences, beliefs, and opinions. I think that's important, to read them with a willingness to listen to their realities without judging.

That not judging part is hard. It really is, especially the farther away these other people's realities get from our own realities.  And that's why it's all the more necessary to keep reading those people whose lives are drastically different. I don't want to be in an echo chamber where I only get high-fives, and I don't want to be in an us versus them contest, either. I don't want to have a sparring contest to see who can get the most points. I don't want to see other people as adversaries or as nemeses to be taken down.

I've gone soft, mushy, disconnected from much of my snark most of the time, and there's a good reason for that, I believe. I've been volunteering for hospice for nearly a year now, and one of things, the most important thing, that we do is to accept families and the dying patient where they are. We support unconditionally. We don't challenge beliefs. We don't judge those beliefs as wrong. We simply try to be there and offer comfort.

I think it's impossible to be that kind of person in that setting and not have it color your perception in other settings. Having been allowed access to some of the most difficult, painful, private moments in strangers' lives, it changes how one looks at other people and their realities.

It can't remove all judgment, of course, as we're human, but it does tinge  many experiences with empathy and compassion. So when I read posts by parents supporting Wakefield, certain that vaccines are the culprit, that recovery from autism should be sought by using every available means, I no longer get angry and feel I need to react to them personally and tell them how horrible they are or how wrong. Am I saddened, disappointed, frustrated? Yeah, but...I'd rather offer support for where they are emotionally then attack and make their lives worse. I don't want to make somebody's day worse, and I regret when I've done that in the past.

I know the vaccine wars rage on--I read those posts, too, and facebook pages where each side is certain of the superiority of its position and the quackery and nastiness of the other. There's not much difference in tone or language between the two groups as they wage war against each other. And it is war, a pitched battle, where the other side is often seen as evil--certainly, villifying the other side is the name of the game.

Take the bleach cure, for instance. Those parents who have used MMS cannot believe that it is bleach--will not. Even if they were willing to be open to what the FDA says, it's going to be an uphill battle to reach them. Mike McCrae writes about Deanna Kuhn's categories of how we evaluate evidence, noting that we move through stages, with the first stage being a realist--we believe what we see, so one can see how anecdotes would be the most important evidence to a realist. McCrae continues to the second stage--that of the absolutist, which is exactly what it sounds like--other people may think differently than us, but they're wrong and we're right. Many of us move beyond those two stages and become able to consider multiple perspectives and "open to negotiation."

When the stakes are high, and we are invested deeply in something, like parents of autistic children trying desperately to help their children become normal or healthy (if they are sick or see them as sick), being realists and absolutists is often understandably where they're going to be stuck. How can one expect a parent who's read Humble's promises (or Boyd Haley's) and bought into them to be willing to consider for even a minute that they were wrong--to confront the horror that they used industrial bleach or mining chelators on their children? And so the more we confront them, the more entrenched they will become.

We cannot, as a skeptical, scientifically-minded community of bloggers who write about this stuff, expect that we're going to convert those people who have bought into these charlatans offering cures. The best we can hope for is to reach those parents who haven't bought into it yet. 

Anger at child abuse, and make no mistake, it is child abuse to give a child industrial bleach orally or rectally, is a must--it will fuel our future writings and prompt us to action to make sure that no more children have this happen, to make that product unavailable so all those children who have been subjected to it will never suffer that abuse again.

At the same time, we need to realize that almost none of those parents will ever accept or believe they did anything wrong. 

People are complicated--our brains are wired in such a way as to make it hard to know when we're being steered in the wrong direction--we discount information that doesn't agree with what we know, and some of the time even before we are conscious of that discounting--we just flat out don't notice it. 

It's a wonder we get anything right. It's why the scientific method is so important. It's why being aware of how we tend to be absolutists is our best bet for avoiding it--or at least letting us limit the damage.

I am both amazed and unsurprised at the parents who keep insisting that MMS is not bleach, even when one shows them several sources showing it's industrial bleach (which means it's stronger). I don't get it, from an emotional level--how they can so discount that evidence. But I do get it when I look at it from the cognitive perspective, from what I know neuroscience has shown about how our brains work.

There aren't any easy fixes-- no way to make those who believe differently to jump that divide and see what we're saying is the correct information. There isn't. They have to get there on their own.

So in the meantime, we'll simply have to work hard to shut down the charlatans and get the dangerous quack treatments off the shelves. We'll have to continue to put out accurate information and hope that it has an impact.

Is it an uphill battle? Yeah, it is. And it's not for the faint of heart. I think of friends and people I know who've spent decades fighting this uphill battle, how wearying it is. But they keep fighting the good fight, and they do it with civility and with substantiated evidence. Day after day, year after year. In the end, we have to live up to our convictions and do so in a way that allows us to look in the mirror and respect what we see, and I think that if we lose our compassion for others, if we allow ourselves to see those who believe differently as enemies with evil intentions, we lose a vital part of ourselves and any chance of bridging divides.


6/12/2012

MMS Is All the Rave Among Alt-Med Parents Trying to Cure Autism

Bloggers like Orac (his first post, his second post, his third post), Emily Willingham, Autismum and others have covered Autism One's latest quack cure, MMS, in detail. Emily set up a petition at Change.org, urging the Secretary of Health, Mexico; Federal Trade Commission; Jon Leibowitz, Chairman (Federal Trade Commission); US Food and Drug Administration; and Commissioner, US FDA (Margaret A. Hamburg) to "order cease and desist on selling, recommending, or administering Miracle Mineral Supplement, also known as MMS or sodium dichlorite solution (industrial strength bleach), as "curative" for children with autism when used orally, in baths, or in repeatedly administered enemas."

Jim Humble, the wiz who decided industrial bleach was just the thing to swallow and have shot up people's colons, has set up a petition to school Emily--it's not bleach! Seriously. Emily crafts a careful, detailed petition that outlines exactly what MMS is, and Humble's response is to go "nu-uh." Now, that'll show all those science bloggers and reasonable people who decide that when the FDA says it's industrial bleach, it's not meant for internal consumption.

Sure, Jim, it's way more expensive than regular old Clorox Bleach, which you can buy for a couple bucks, and which Age of Autism totally stood against when a mother killed her autistic child by making him swallow bleach. This is completely different, of course, and when bought from the Jim Humble approved internet store,  much more expensive. It's not bleach; it's industrial bleach, according to the FDA:

FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS)Product contains industrial strength bleachThe U.S. Food and Drug Administration is warning consumers not to take Miracle Mineral Solution, an oral liquid also known as “Miracle Mineral Supplement” or “MMS.”  The product, when used as directed, produces an industrial bleach that can cause serious harm to health.
The FDA has received several reports of health injuries from consumers using this product, including severe nausea, vomiting, and life-threatening low blood pressure from dehydration.
Consumers who have MMS should stop using it immediately and throw it away.
MMS is distributed on Internet sites and online auctions by multiple independent distributors. Although the products share the MMS name, the look of the labeling may vary. 
The product instructs consumers to mix the 28 percent sodium chlorite solution with an acid such as citrus juice. This mixture produces chlorine dioxide, a potent bleach used for stripping textiles and industrial water treatment. High oral doses of this bleach, such as those recommended in the labeling, can cause nausea, vomiting, diarrhea, and symptoms of severe dehydration.
MMS claims to treat multiple unrelated diseases, including HIV, hepatitis, the H1N1 flu virus, common colds, acne, cancer, and other conditions. The FDA is not aware of any research that MMS is effective in treating any of these conditions. MMS also poses a significant health risk to consumers who may choose to use this product for self-treatment instead of seeking FDA-approved treatments for these conditions.
The FDA continues to investigate and may pursue civil or criminal enforcement actions as appropriate to protect the public from this potentially dangerous product.
The FDA advises consumers who have experienced any negative side effects from MMS to consult a health care professional as soon as possible and to discard the product. Consumers and health care professionals should report adverse events to the FDA’s MedWatch program at             800-FDA-1088       or online atwww.fda.gov/medwatch/report.htm.

It can't be a surprise, after Age of Autism supporters rallied around Boyd Haley and his mining chelator breakfast topping, that those who believe in alternative treatments and big-pharma bad-boy conspiracies would rally around Jim Humble and insist MMS isn't bleach at all; it's a miracle and if you don't use it, too, you don't care about healing your kids. Maybe they'll not only by Humble's industrial bleach, they'll also join his church.

6/11/2012

Shared Meaning

"It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings." -- Jim Sinclair, "Don't Mourn For Us" 

I'm rereading "Don't Mourn For Us," in tandem with "On Being a Cripple," for a comparison paper my comp 1 students will be writing tomorrow, and the quote above really hit me, especially given a situation my son and I navigated yesterday.

Sinclair's words, I think, are helpful. Shared meanings. So much of our communication with each other is under the assumption that things and words mean the same things to each of us, but they don't. And this is not a disconnect between just autistic people and the people who interact with them, but a reality that all people share.

Shared meanings. When it works, it's lovely, like when I said FUBAR in class, and my military students said in unison "fucked up beyond all repair." When it doesn't, like when I said, "I have a plan," and alluded to Cylons, only to draw blank stares, clearly shows what happens when meanings aren't shared: communication, at its deeper levels, doesn't happen--shared meanings don't occur. Closeness is not felt.

Language is loaded. We forget that at our own peril. If we wish to build shared meanings, then we must learn to speak the same languages, which takes work.

Rick and I decided about 18 months ago to get rid of satellite. We have the channels that the antenna picks up, Netflix, Hulu and the internet. Instead of keeping up on the latest shows, we've gone back and watched older shows with the kids so that we will have an overlapping subtext. Star Trek (all of them), Star Wars, Space Balls, all the shows that Rick and I share a deep love for and the dialogue that sprinkles our conversations: we wanted to bring our children in on that shared experience. Shared meaning.

It also means entering their realm, as well. I can talk Sponge Bob, Phineas and Ferb, and other current cartoons with them and know where a piece of dialogue offered repetitively comes from. Shared meaning.

When words suddenly jar and wound us, thrown at us carelessly or casually by one of our children on the spectrum, stopping to consider whether there's truly shared meaning underlying those words is a must. In truth, most of our discord in our relationships in general would be reduced if we stopped to consider that issue of shared meaning. If we aren't on the same page, then we need to stop and work to understand what the other person meant before we assume our meaning was his or hers.

Maybe it won't lead to something as idyllic as world peace or anything, but it will save bruised feelings and broken relationships. It will work towards building shared meaning and never feeling like one is alone in the relationship.




Obsession 2.0: You can never have enough books

Saturday, the girls and I took our money and went to the annual library book sale, where we were able to get 54 books for awesome price of $45.45. Here the girls (and cats) are arranging them.




Jack and Dan definitely approve.

Sunday, the boy and I went back to the sale since it was $6 a bag. We had spent Saturday evening collecting all the loose change in the house and were able to get 8 bags. We had a great time--Bobby filled three bags with cookbooks and science fiction for himself. I loaded up on a lot of history, sociology, and hospice-related texts, as well as some classics and cool-looking new fiction authors. When Lil, Rose and I were through laying those books out in batches and counting, we tallied 184 books, so between the two days, we managed to find 238 very cool books.

Jack amidst the books.


 Rick in awe--let's call it that, ok?
 First two bags.

Rosie surveying the goods.
Needless to say, there are still piles of books.
It's going to take awhile to organize and put them in the appropriate bookcases.
 And just because it's geek heaven, exploding Tardises.
And Daleks...
And some Sheldon!
Awesomeness!