Jenny McCarthy,the DAN protocol, and Big Guilt: or, How I stopped worrying about my son's recovery and started working on my own

(First published as a "note" on Facebook on August 8, 2011.)

First: some background.

1) My son has autism.

2) Among the treatments for autism is the so-called DAN (Defeat Autism Now) protocol, which I describe in some detail below

2) There is a barrage of information and misinformation on autism available on the internet. 

Speaking of misinformation...on to Jenny McCarthy.

A recent posting on twitter of Ms. McCarthy and her ongoing campaign for "Autism Recovery" set me off on one of my recurring spirals of rage, guilt, frustration and fear. Most of the time I can talk myself down from these episodes, but this time I needed to write about where the feelings come from and why they are so focused on her so-called "activism".  I bear none of these feelings for her personally. I don't know her, and, in fact,  I understand completely where she is coming from. 

Five years ago, my son was diagnosed with autism at age two, and, at the time, I felt that the world had ended. I felt sorrow and Big Guilt (what did I do wrong? How did I ruin him? What did I eat or drink or think that did this? Am I a bad mother?).  I felt grief over losing the boy I thought I was going to have - the one who played with his friends, ate too much junk food, asked me "why" over and over, called me "Mommy" and begged me to play with him. (My son did none of these things at the time, nor did he until much later.)  I felt frustration and anger over the role I now felt I had to play in his life - I wanted to be his mom, not his goddam therapist.  I wanted to take him to birthday parties and play "go fish" with him and teach him soccer, not sit with him for hours trying to get his attention long enough to get some kind of recognizable response. (Exactly how many times would I have to repeat the same frickin' word over and over??) And, most of all, I felt fear. (What will happen to him? Will he ever talk? Will he ever love me back? How will he cope? How will *I* cope??)  All of these feelings ran throughout the ones that drove me to try to help him anyway - the main one, of course, being Big Love, the kind you can only feel for your child. 

And there I was, with a new baby girl who might have autism and a toddler boy that absolutely did. Of all the feelings that snarled deep inside me, the ones that kept popping up were Big Love and Big Guilt.  I felt driven to do the best I could by my children, but how? What could I do to help them? And, most compelling of all: How can I spare my daughter from this? This was the time where I was at my most vulnerable, the "bargaining" stage of my grief. I was, in fact, ripe for Jenny McCarthy and the DAN protocol, and their promises that my son could "recover", and be the boy that I (and, it seemed, everyone else) thought he *should* be. Recovery! No more practically begging him to look at me! No more backing out of taking him to the park or to playgroups because the other parents started giving me The Look! No more having to explain to my family why my son did the things he did, when even *I* didn't fully understand what he was experiencing! It seemed to good to be true. All I had to do was follow the DAN protocol to the letter like a good, determined parent who loved her son and everything would be fine. 

First, research. I found some books on the "Starving Brain" explaining how children with autism could not adequately absorb nutrients essential to development. I found a doctor that would provide the blood tests and vitamins we needed. Although none of this was covered by insurance, by golly I loved my son and it was worth every cent (thanks to my mother, who was willing to help me financially, or we would have gone broke.) I found out that my son was allergic to casein, but not to gluten. Still, he had "leaky gut" in which gluten blocked essential neurotransmitters in his brain (or something like that... like all religions, it seemed to make sense at the time) and we had to cut out gluten and casein *immediately*.  Oh, and we had to not vaccinate because of the toxins and heavy metals in vaccines (never mind that mercury had not been used as a preservative in vaccines since the early 90's, there was other stuff in there.)  In fact, we had to de-toxify his environment as much as possible. No carpets, no plastics, only lead-free paints and metals, no nickel, only an organic mattress. I got rid of our carpets, and only used glass or stainless steel to cook with. I only used pyrex to store food in. I bought him an organic futon to sleep on. (Actually, this was one of the lifestyle changes I kept.) And, most of all: supplements, supplements, supplements to feed his starving brain.I had to give him detoxifying clay baths. If I kept to the regimen, I was sure to see results, I was positive of this. Other parents said so, Jenny McCarthy said so, and, most of all, my Big Guilt said so. If it failed, it was because I wasn't trying hard enough.

If it failed, it was because I wasn't trying hard enough.

At three years old, my son was taking up to thirty vitamin supplements a day. He wouldn't swallow pills, so I had to empty the capsules into milk and add a lot of agave sweetener so he would drink it.  He remained the same sweet boy he always had been, but something began to change.  He started to act more lethargic, more moody. I thought this was progress. My husband began to do some research of his own, and found out that, on the advice of the DAN physician, we were giving our son amounts of zinc that was toxic for adults.  He had a bad reaction to another one of the supplements, but the physician's response was "keep giving it to him, he'll get better."  These things, combined with the lack of any notable "recovery" on his part, caused a war in my heart between Big Love and Big Guilt. 

Big Guilt said "You're failing! You haven't gotten rid of all the gluten, somehow! The doses aren't right! There are still toxins in his body! If you quit now, he'll never recover and it'll mean you didn't love him enough!" while Big Love said "This treatment isn't working because it's not the right treatment for him.  It's making him sick and miserable, and you broke and miserable. Find the treatment that is right for him and discontinue the one that isn't. You tried your hardest, and now it's time to try something else." Luckily, Big Love won this round. 

And here it is: the crux of my feelings toward Jenny McCarthy and the DAN protocol. They both use the complex machine that is Big Love and Big Guilt to push the idea that autism is a disease that must be destroyed, like AIDS.  That our kids with autism are suffering, damaged, broken, hurting, and it's not only our fault (because we vaccinated them, or breathed the wrong air, or ate the wrong thing, or thought the wrong thoughts), but it's up to us to fix them. If we don't try, then we are bad people who don't love our kids enough. And, worst of all, if it doesn't work, it's because we just weren't trying hard enough. 

While it's true that many parents report that their kids have responded will to GF/CF diets and/or the DAN protocol, it's not a magic cure-all. And it won't work for everyone. And if it doesn't work for you, it doesn't mean you don't love your kids enough.  I would read stories about how someones' child seemed to change overnight from a child deep in the well of autism to a social, outgoing butterfly, all due to some magic formula of the DAN protocol and chemical chelation of some kind, and I would cry with frustration and jealousy.  And then Big Guilt would start whispering to me that I was failing my son because, after all, how did I know I had gotten rid of *all* the gluten? How did I know that he was taking *all* the vitamins? Or that, if I quit now, he wouldn't just be lost to me forever? 

This is a terrible, dangerous message to spread, not only to the autism community, but to the community at large.  The worst part of this message is that it exists only  in the subtext of Jenny McCarthy's activism - she never comes out and *says* any of this, it is only implied in the minds and hearts of those of us in the throes of Big Guilt and Big Fear.  So, we OD our kids on vitamins and refuse to vaccinate them and grow to fear and distrust the science and medical community. While it's true that they don't know everything, they are trying their damndest to learn all they can on how to best help our kids, through sound, repeatable research.  That's all any of us can really ask of them.

As for me: I'm in recovery. While it was hard to deal with the hard truth that there is no magic "cure" for my son's autism, there are tools we can use to further his progress. So far, the best treatment we've found is consistent ABA sessions with people he knows and trusts. At nearly seven, my son is reading, using the computer, starting to talk appropriately (not just echolalia) and starting to play with his little sister - this things are not happening because my son is recovering. They are happening because he is progressing. He calls me "Mommy" and holds my face in his hands, looks me in the eyes, and smiles - and I'm feeling better about his chances in the real world.  The feelings I described in myself are still there, and will always be there, but their voices are quieter now.  

Thanks for reading, even if you skipped to the end ;). 

Comin' Out of the Dumbass Closet

I am coming out, folks. 


I'm pretty ignorant about most things, especially politics, science, philosophy, particle physics....uh, yeah. I keep seeing the Richard Dawkins Foundation for Reason and Science and have been avoiding it like the plague, not because I wouldn't read what I saw there, but because I would a) not understand most of what I there, and b) get all uppity and pissed off when I read an opinion that conflicted with my own (mostly) uninformed one.


Why not do the research, then? The answer is pretty lame but also quite simple - I can't be bothered to make the time to do so. I've got a family and I spend most of my brain energy on them. To actually become informed would be to make a substantial (for me) time commitment to read up on things that mostly only interest me in passing so I can join discussions and sound erudite. That just ain't me.


Most of you who know me seem to feel that I am fairly intelligent, which makes me feel good. But being intelligent - and being able to express myself in a fairly sophisticated way - does not mean I am likewise educated. Don't get me wrong - I am interested. I'll read your posts, listen to your rants, get all worked up about something I feel strongly about, and post my opinion with the best of them - but don't expect debate from me, b/c you're not likely to get it. Debate requires research and facts, something I just am not willing to make time to pursue. 


In short, I am ignorant. Willing to learn, but ignorant.


I've come out....and darn it, it feels good. 


(Okay Teabaggers....your turn. Come on, do it...it's the Right Thing to Do. God wants you to.)

Awww....SHOOT!

I know, I know...this is looking like me beating a dead horse. Gun ownership, Second Amendment Rights, Everyone Play Nice, yadda yadda. However, some things have occurred to me for the very first time regarding my ambivalence about gun ownership and I want to share them before they get eaten by Vodka Particles.

First: I know some of my good friends who believe that everyone should be able to bear arms a) know my opinion and b) have probably stopped reading by now. Friends, it's okay, I understand. Many of you have a knee-jerk defensive response to anyone who suggests otherwise - I have those triggers too (haha, get it?!). Let me assure you that I have no intention of attacking you.  That being said, here are some of the reasons I have heard, along with my response.

1) "It's my right under the Second Amendment"

Yes. Yes it is. I won't belabor the point regarding the historical context of the Amendment itself, that's a whole 'nother argument and I'm not well educated enough to tackle it anyway.  However, exercising that right to carry a gun around is sending me ('cause it's all about *me*) a message. And that message is: you have to trust me implicitly that I won't use this gun to shoot you.

When I see someone with a gun who does not have a uniform, a badge, or both, I don't see someone who is exercising their right to defend themselves. I see someone who is a direct threat to me.  I assume that, since you have a gun, you intend to use it. Without that badge or uniform I have *no* way of knowing what kind of training you have recieved, if any. Cops are neither omnicient nor omnipresent, so I can't trust that you didn't just pull it out when cops weren't around. You are asking me to trust that you won't pull that gun out and use it to demand that I suck your dick. If you are a stranger, that is asking a HELL of a lot from me.  Just like you should have the right to carry that gun, *I* should have the right to not get shot by some deluded trigger-happy asshole.

Which brings me to my next reason:

2) "I only use it in self defense"

I took this wonderful self-defense course last fall where I addressed my concerns about using a gun for self-defense: namely, how does one decide when deadly force is called for? The police officer told me that, when one recieves their weapons certification, they are taught just that: when they can a) recognize when their life is in danger, and 2) the appropriate use of deadly force. In other words, they are taught many of the same ways to judge a situation that a police officer is taught.  I thought that was definitely worth learning.

See, I don't think someone running off with my purse justifies me shooting them...it's just a purse. I also don't think that someone breaking into my home to take my stuff is justification for shooting them...it's just stuff. However, if they threaten me or my family, I do feel justified. My problem is: at what point has that person (or persons) crossed the line between threatening my stuff and threatening me? And what if I'm wrong? What if that person wasn't carrying a weapon at all, but a bag of Skittles? And what if the gun they are threatening me with is my own?

That is a hell of a lot of responsibility to shoulder. That is why I am not a police officer, and why I have so much respect for individuals who *have* taken on the responsibility for deciding who lives and who dies. If I'm right, I'm a hero even though I've killed or injured someone.  And if I'm wrong, I've committed murder or assault.  That leads me to the next reason:

3) "If everyone had a gun, we'd all be safer"

Guns are the great equalizer. You don't have to know how to use a knife, or your fists, or verbal coercion: you just point and shoot. So, having a gun gives you power. I believe that, more than anything else, is why people want them so desperately. Having a bad day at work? Boss walking all over you? Girlfriend thinks your a pushover? Not anymore...now you have a gun. You make the rules, because no one can stop you. Now what?

I'm cynical enough to believe that having that kind of power brings out a darker side of human nature.  Anyone - ANYONE - can become a murderer, no matter what your background or training. Access to a tool such as a gun that would enable you to exercise that power more readily would enable more "impulse" shootings. You have the tool, you may not be thinking clearly, you can take charge. Why not just do it?

"But the other person has  a gun, too" you might be thinking. I honestly have no idea if that is any sort of deterrent for someone with murder in their heart. And if I have a gun too, and we have a John Woo-style standoff, one or both of us will end up dead. Doesn't exactly make me feel any safer. 

4) "I only collect them"

Guns are beautiful pieces of technology. They are thrilling to hold. That greasy, sleek heaviness that can only come from a gun barrel, beautiful, smooth wooden stocks, the smell of gunpowder. And, of course, the rush of power you feel when you hold a gun, aim, and shoot. Target shooting truly is fun.

That being said...unlike knives, guns have one purpose and one purpose only in their design. To Kill. Hunting rifles are just that - they are made to hunt. Pistols are made for easy portability, easy wielding, and easy access. To. Kill. 

I can understand the appeal of having a collection of deadly weapons, I really do. As I have said, guns truly are awe-inspiring, not only in their design, but in their deadly potential. So long as we remember - they are weapons, not toys, not trophies. 

Over all, I know there are perfectly responsible gun-owners out there. I don't know how many of those people have successfully defended themselves against danger by using their gun - I'm not sure there is a way to tell, really. I understand that owning a gun gives you a sense of power that you might otherwise be lacking. I just can't support an umbrella policy that EVERYONE can and should be entrusted with the responsibility of owning a gun. Some people have absolutely no business owning a gun.

There are no easy answers to the question "So, Pam, how would *you* determine who should have a gun and who shouldn't? Who gets the power? Who can use it responsibly?" I can only answer that power, ultimately, corrupts. Someone who might not otherwise hurt another person might shoot if they had a gun, because they can. That's what power does. I don't trust myself with that kind of power. I think Harper Lee nailed it when she said "Having a gun is an invitation for someone to shoot you."

Confessions of a Grown-Up: I Play Video Games

I was llstening to one of my favorite podcasts this morning and the host mentioned to the guest that he loved the game Portal 2. The guest said that he used to love video games...before he "became an adult. You should try it sometime."

These folks were comedians and I knew it was all in good fun, but this is not the first time I've heard video games disparaged as an activity for the immature.  I believed it myself - just mentioning the words "video games" conjured up images of out-of-shape youths in black t-shirts and acne yelling phallithropic profanity at their middle-aged peers .  My husband played video games, mostly on the computer, and I found myself feeling appalled at the amount of time he could spend staring at a screen and moving avatars around. "What's the point in all that? Don't you think you should do something useful with your time?" I'd mutter to myself.  Games were for kids, Life was for grownups, and that was that.

Two very important events changed my mind. 

There were other factors, of course - there always are, but these two stand out. First: the games of today are *nothing* like the Asteroids and Pac-Man of my time.  Games now are rich in storyline, visually spectacular, and can be completely immersive and character-driven - so much so that I find myself caring as deeply for these computer-generated avatars as much as I would for my favorite character in a TV show, or a book.  I used to watch my brother play DungeounQuest on our AppleIIE when I was a kid, with the blocky graphics and slow pacing, and eventually played it myself, but these could only hold my interest so long.

What turned it around for me was when I watched my husband play Diablo II and listened to him talk about the different characters, different tactics, different items and so forth with our friends, and my curiosity was piqued...and I felt left out. So,  I started playing Diablo II myself and found a new topic of conversation - actually, several topics of conversation - in which I could engage in with my husband. I didn't disappear into Diabo II, but I did spend a great deal of time playing it, and enjoyed talking it over with him.  That, and I truly enjoyed it, and still do.

The second thing was this: my realization that I was an adult, and that living an adult life, making adult choices, and doing adult things was overrated.   I have two children, I cook and (sometimes) clean every day, I pay bills, I make decisions for our family. I'm bored and sad and lonely sometimes, because as responsible adults, we have to stay home at night for our children.  We have to budget so no cable, and I dislike most programming anyway. We can't just drop everything and go see a movie or go see a live show anytime we want to.  So, when I saw Jim playing Dragon Age, I asked him what kind of game it was, and he described it as a "Choose Your Own Adventure / Dragon's Lair kind of thing" and once again, my curiosity was piqued - it seemed more like an interactive cinematic which, of course, it was.  I could escape into this marvellous world where I had (almost) complete control over what happened, where I could be powerful, and, most importantly of all, I could have do-overs. I could leave the game and pick it up again any time I wanted, I could play for one hour or four or six. I would leave the game with my head spinning with stories, ideas, plans, and anticipation for the Next Thing. I felt my imagination stirring again. If I was bored, I could imagine myself in that story and mull over my choices, ready to try something else the next time I had a chance to play. 

Immature? I might have thought so at one time. Escapist? Probably. But what video gaming is to me is...Saving my Sanity. Giving me something else to do besides be a Responsible Adult. And I am a high-functioning gamer...I can still talk about other stuff (right, Podcast Listening Club?) and I can go days without it, especially when there is just too much to do. And...it is still there for me when I need to just Not Be Me for a while. 

I acknowledge that my demographic may be a bit unusual (or maybe not, the video game audience is vast and pluralistic). I do get funny looks and am even challenged by people who think I'm a poseur (and it is the funniest thing ever, how pissed they get over a Girl trying to be a Gamer.)  I geek out over new releases and am sure at least some of you are just shaking your head over it.  But I do feel that, by taking steps to maintain my own sanity, I'm probably far from immature. That sounds pretty much like Responsible Adult to me.

The Little Mermaid...My Little Thorn

Visually striking, catchy songs, beloved heroine, handsome prince...this story should have it all, and it should have captivated my hopelessly romantic sensibilities to the point of adoration. Yet, of all the Disney movies out there, this one....

I can't stand it. It makes me sick.

Now, I've got nothing against mermaids. I love them, really. No, really - their graceful beauty, mystique, and their utter inaccessibility to an air-breathing bipedal monkey like myself puts them on the same pedestal as, say, gorgeous movie stars.  But this movie takes Ariel, one of these lovely entities - the most lovely, talented and bravest one of all, according to the setup - and topples her down to the most helpless of movie damsels, the one who simply cannot live her life in her castle and her family, but must reach toward the inaccessible...in this case, the world of air-breathing bipedal monkeys.

And why? Not just because of the stuff we have, but because she sees one that's kind of a Baldwin and decides to sacrifice everything just so maybe he'll notice her. For Chrissake, she goes to a sea witch and undergoes major body adjustment in the hopes - the HOPES - that he'll fall in love with her. Yeah, all that fascination with humans, their stuff, their world - it's all wrapped up in the snuggly package that is Prince Eric. And she can't do it on her own - no, she has to have some crab follow her around and give ol' Eric pokes in the right places. And still, it's not enough. No, he's gonna marry the girl he *thinks* saved his life because her singing voice is kind of nice, never mind the hot piece of fishy ass right in front of him. You remember her - the one who gave up everything for him. 

But instead of being filled with the appropriate righteous rage, Ariel still just can't live without this guy who kind of digs her but is marrying some stranger with a nice voice - well, just because. Somehow it all works out that she stops the wedding and gets her voice back and Eric suddenly says "hey, there's this hot piece of ass who *also* has a nice voice, ooooh, I better go get me some a' that" and goes after the witch and kills her and holy cow, suddenly he's in loooooooove.  And all Ariel had to do was get kidnapped by said witch - Jeebus, she could have just done that and saved herself some pain and suffering.

Yeah, I really dislike this movie, and it makes me kind of sad that my daughter is so interested in Ariel - to me, the *least* inspiring of all the Disney "heroines", even less so than Snow White. Hopefully this will pass (it usually does) and she may form her own conclusions about Ariel.  Until then....I'll keep pushing the Wonder Woman. 

My Personal Definition of an Asshole.

WARNING: I'm overgeneralizing here and have no concrete examples readily at hand to present in support of my opinion. 

I'm reading various articles which address the struggles of LGBT individuals in America, particularly of those in the Mormon community.  I'm also remembering the deaths of children from treatable conditions because their parents believed that God's Will should prevail. Or about children being disowned and turned out from their house and/or community because of their conflicts with the faith of their parents.  So, how does my brain connect these  things?

Any parent who puts their religious faith ahead of the health, welfare, psychological well-being and personal safety of their children is an Asshole. Period.

These are your kids, dammit.  What is WRONG with you??? How can you put God, whom you've never seen, touched, heard, had daily direct contact with and personal responsibility for, above your children??? Yes, I know most would argue that this is incorrect, but I've certainly never seen God give you a hug or tell you about his day.  He's in your head. Your kids are right there in front of you. Take responsibility for what you can touch.

Short rant today.  But sometimes less is more.

Autism. Is. Not. A. Disease.

Okay, I'm gonna rail on semantics today, which is not something I usually do. In fact, I often get very annoyed when other people do the same thing I'm about to do. However, I recognize the power of words and how mere language can shape our perceptions. That being said, here goes:


I keep seeing autism in the writing of others, being described as a "disease". Ahem. Autism. Is. Not. A. "Disease".


I haven't looked any of the following up. It comes straight from my own beliefs and ideas. However, I believe we can all agree that certain words hold certain connotations, and the word "disease", to me, suggests the following:


1) A "disease" may be cured.
2) A "disease" may be contagious.
3) A "disease" is degenerative, often fatally.
4) A "disease" is the word we use to describe something in the body gone horribly, horribly wrong. Something insurmountable, alien, terrifying. Something that must be stopped.


Here is why, to my mind, autism is *not* a disease:


1) There is no "cure" for autism, no matter what literature or anecdotal evidence might say. Even people who have progressed to the point of having the diagnosis removed have the same brain and body they had before. And they must maintain treatment if they want to keep from regressing.
2) Autism is not contagious.
3) Although some autism presents as regressive (usually around age 3), sometimes quite alarmingly (Rhett's syndrome), actually having autism will not kill you. (The behaviors of a person with autism could, though (not responding to being called while lost or in the middle of the road, for example, or stimming by banging your head against the wall over and over).) 
4) This one is tricky. For years, I wanted to "cure" my son of this "disease" by "fixing" what was wrong with him. 


My son is not sick. He is, in fact, quite healthy and has a fairly thin folder at the doctor's office. My son, however, is strange to me, and probably to almost everyone else. I love him - deeply, irrationally - but his ways are strange to me. In the old days we might have called him a "changeling" and assumed the fairies took our kid and gave us one of their own. Since we seem to be raising one of the Good Folk, the logical course of action now, is....learn to speak Good Folk. And teach him our ways, while we learn his. 


So, what do we call autism? We are human, we need labels and names for things in order to organize our world and make it bearable to live in. It's not a disease, then what is it? Autism is a thing we live with, and is a permanent part of our lives, like it or not, and we need to know what to call it when we talk about it. 


For now, for lack of a better word, I've been using "condition", "issue", or even, "deal". As in: "Daniel's got some issues today, can we come another day?" "We've got some potty deals today...get more toilet paper" or "Autism is a neurological condition which impedes the individual's ability to interact socially with others". 


Oops, gotta go. Thanks for reading :). 


(Sorry for the pansy-ass use of "may" in my first list - I just knew there were diseases that were contagious, non-contagious, fatally degenerative and non-fatally degenerative and was pretty sure that if I was too declaratory it would come back to bite me in the ass.)

Aw, the hell with it...

My posts on Facebook have gotten ridiculously long, so it's looking like I've got a lot to say. So, here 'tis....my brand-new, shiny blog! If you've known me for a while and you're reading this stuff and saying "hey, I've read this before..." you're right, you have.  I'm cross-posting onto my blog, partially for the freedom to write with abandon without worrying that Facebook will bury it in the Timeline Vortex, but also because I'm getting ancy and want more people to be able to read my stuff.

Right. That being said...onto the Blog. Welcome and thanks for coming!