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163 Children Healed From Autism? Nope.

For my babies, who are perfect just as they are, inside and out (but won’t be, if I start giving them bleach enemas…):

No More Bleach

Dear Internet,

The bleach people claim they gave healed 163 kids from autism,  but have they really? After spending months in their forum,  you begin to wonder. Every so often,  a new story pops up and the bleach people rejoice.  The latest was #163 from France:

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As it turns out, there is no #163. This child, the one who was miraculously healed,  does not exist.  This story was fabricated by someone questioning the authenticity of Kerri Rivera’s claims.  As suspected,  Ms. Rivera took credit and used this story as further “proof” that CD can cure autism.  You can read the entire account of how this went down here:
http://saulniercamaut.tumblr.com/

And when you’re finished,  share it with your friends. These kids are being abused and the parents are being lied to.  Kerri Rivera belongs in jail, along with anyone else recklessly promoting this dangerous snake oil.

Until Next Time,
#nomorebleach

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My Thoughts on Murder–Part 2

Sorry, I had to take a break there. I intended to post more the next day, but I was crying all over the place, etc etc, blah and blah, so on and so forth… behold my final thoughts:

In conclusion: no one will ever convince me that killing a child is the right thing to do. But equally, if you present me with someone who *does* believe that, then you’ll never convince me that person is sane, either. Regardless of how they got there, regardless of background factors, regardless of the minutiae of their life which I (and you) can’t be privy to, it’s typically INSANE people who feel like they have to kill themselves/their kids/other loved ones. In which case, if you see this sort of situation unfolding somewhere, and you’re in a position to do so, for the love of all that’s holy, get in there, make calls, protect them, protect their loved ones, ESPECIALLY protect their kids–but don’t act like you know best and it’s your right to judge them. It’s not, and more importantly, it helps NOTHING and NO ONE. And what’s more important–making yourself feel holier than thou, or potentially saving someone’s sanity and someone else’s life?

Issy Stapleton’s attempted murder is a tragedy, and I cannot read about it over and over again. If I did, it would grind my heart into sawdust. And many of the things I’ve read about Kelli Stapleton DO make me question her own compassion and empathy for her daughter, if I’m honest. But for fuck sake, who do I think I am, that I would get to judge her? In some of the clips I’ve seen from a couple of years back, she looks like she’s on the brink of crazy to me, and I don’t even know the woman. If her husband, his/her parents, their wider family, their pastor, Issy’s professionals, etc etc etc didn’t see that something was wrong with Mommy Stapleton, then she’s not the only problem.

This society we live in, that instantly vilifies people for doing batshit crazy things, needs to change. What we need, in my not-so-humble opinion, is a society that’s better at recognizing “on the brink of batshit crazy” and helping people BEFORE they land right in the middle of Batshit Crazy Land. Please, believe me. When you find yourself on the train to *that* place, and you don’t know how to get off, and you need some help, the very *last* thing you need is to be shamed into staying silent. And for all I know, that’s what happened to Kelli Stapleton–she was told too many times to think positively, to look at the help Issy had, to make the most of the therapies available, to continue trying to “cure” Issy (ASD can’t be cured, folks–and the suggestion, when you really look at it, is an ugly and dangerous one)… and the result was a never-ending battle of wills, a futile attempt to “re-wire” a child’s brain through dodgy therapies, the erosion of a woman’s sanity, and worst of all, the near-death of a beautiful, innocent child.

That shit has got to stop. We have *got* to get to a place where people can say, “I think I’m going nucking futs,” without feeling the stigma behind it. We have *got* to get to a place where we can acknowledge that children with special/complex/different needs are exactly that, to raise (complex, and arguably more difficult) without assigning any blame to the kids themselves–or the parents. We need to get to a place where, when an autistic kid has a meltdown in a store, society doesn’t judge the parents and strangers don’t try to “discipline” the kid themselves (has actually happened, to me)… THAT is the kind of shit that makes parents feel like they *have* to alter their kids’ behaviours. It makes them feel like they *can’t* always let their kids develop at their own pace (because when some cock of an old dude comes up behind my daughter and shouts wordlessly at her in a store, and in the moment I’m not quick enough to think about calling the cops and pressing charges, my first thought is “Oh no, my sweet baby; how can I make her stop acting like that, so that bastards like him don’t try to scare her?” as I sit there struggling not to cry).

I get it. When you see the way some people treat your child for being different, you become DESPERATE to make them seem less different. That’s not hard to understand, really, is it… and it has to change, or shit like Issy’s almost-murder will keep happening. And as sorry as I do feel for Kelli Stapleton, it pales into nothingness beside what I feel when I think of Issy herself… or of randoms shouting at *my* baby girl, in a store, and the hurt, bewildered look on her little face… of that woman who berated us and told me my son was badly behaved, for not knowing (at the age of 3) that it’s not okay to take a stranger’s hand (hers… what a fucking douche, she was–I cried loudly and publicly, that day, after losing my cool and shouting at her)… that whole pile of SHITTY SHITTY SHIT has got to stop, and it will only ever happen when people with ASD and their parents aren’t made to jump through eleventy-billion hoops, just to get the kids treated like human beings. So-called “mercy killings” are only a symptom of the problem, which goes much, much deeper; and I believe the problem is the result of personal mental health issues, plus the way society treats people suffering from them.

So, y’know. Be the change. When you see someone struggling, be the person who offers practical help, but also, who tells them it’s *okay* to feel like this. It’s *okay* to feel like you want to leap off a cliff, sometimes. It’s *okay* to think that you’d want to take your kids with you. It’s *okay* to need to talk to someone professional, about these feelings. Sometimes, talking about it is the only thing that will stop you from *doing* it… so if you see someone who needs to talk about that sort of thing, please, don’t shame them into silence. Accept and understand them into getting help, and maybe, just maybe, we can avoid the terrible tragedy of another attempted murder-suicide…. maybe.

So. I did a good job keeping this one short and sweet, yeah?

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My Thoughts on Murder–Part 1

Okay, as the mother of 2 kids with ASD (and suspected ASD, myself) I feel I’d be amiss if I didn’t comment on the Issy Stapleton situation… if you need background, that’s what Google is for. The internet is awash with information about Issy, and her mother, who is (as far as I know) awaiting sentencing at this very moment. I have far too much to say about this, and I’m trying to make it as brief as possible, so here goes:

1) Everyone knows that murdering people is wrong. If you try to murder your child, you are in the wrong. No one–regardless of their compassion for the family, including Issy’s mother–is trying to say otherwise. If anyone actually believes otherwise, they need a throat-punch… or, some crazy pills/counselling/etc. Which brings me to point 2;

2) I felt compelled to kill my kids, once. I *immediately* realized that my thoughts were batshit-crazy, and I got some help, and actually made my partner risk losing his job by having him take 2 weeks off work while we waited for my meds to kick in (they did, SO fast–I thought it was all kinda bullshit, and they wouldn’t do anything, but after 2 weeks on an SNRI and about a week on a standard SSRI plus an anti-anxiety med, I could think, again… and I spent DAYS weeping over how close I came to doing something that, in my right mind, I would never never never have even contemplated). But perhaps some background, re: feeling like I had to kill my kids:

3) First of all, it was never my eldest–she’s the more severely/obviously/classically autistic–because I figured she’d get a free pass, on the Day of Judgment. More background? Oh, alright. When I have a near-psychotic break, apparently I fall into an extreme depression with a distinctly hellfire-and-brimstone flavour. So, I was going to ask God for forgiveness, then kill myself and my “higher-functioning” son, because *I* was toxic and ruining my kids’ lives, and I wanted to spare *him* from Hell by making sure he went to Heaven when he was young enough to get in. (Why did I think I was literal poison, to my kids and everyone else? Why did I think my boy would go to Hell, but my daughter’s more severe autistic traits would cause her to be spared that eternal punishment? I’m not qualified to examine that question, really. Give me another few YEARS of these psych classes I’m taking as and when, and I’ll get back to you on that… but how about, “I was FUCKING CRAZY at the time,” for starters?) But moving on to how this affects my view of the Issy and Kelli Stapleton debacle:

4) Because of my background, I am always going to assume that a mother who hurts her child/ren isn’t quite right in the head. Because I remember how I felt, when murder-suicide seemed like the only right choice, I am never going to assume that someone else isn’t SUPREMELY fucked up mentally, when they pull a stunt like that. For that matter, any time I hear of *anyone* killing themselves, I don’t see it that way… as someone else said, depressed people don’t kill themselves–depression kills them. Or schizophrenia, or bipolar disorder, or any other mental illness, when it becomes so bad and so distorting that the reality of others is no longer a reality you’re even aware of. Which brings me to my final point:

5) Unless you’ve personally lived with the kind of mentally-distorted perspective that can make you believe, e.g., your presence is literally poisoning those around you, and you HAVE to cut yourself out of their lives, quickly, as soon as you can, like so many cancerous cells from a human body… unless you’ve been there, you don’t have the right to comment on other people’s (fucked up, undeniably wrong, morally indefensible) actions without some empathy and compassion. And if you HAVE been there, then, like me, I’m guessing you watch these sorts of proceedings in a perpetual state of heartbreak, tears ever-present at the back of your eyes, thinking no thoughts at all without the ever-present mantra repeating endlessly inside your skull: “There, but for the grace of God, there, but for the grace of God, there, but for the grace of God….”

[And…. I will continue this tomorrow, I think]

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On Autism–Part 2

So, to recap, my children are unique and struggle uniquely, but they are wonderful, as well. Here are some of the reasons why:

Conversations with my son. Now, this is a child who never made the expected “babbling” sounds; all developmentally on-track babies make noises like “ma” and “da” and “ba” by the time they’re around 9 months old. (My daughter, who’s the “more” autistic of my kids, would actually pitch-match, at that age–I’d sing a note, she’d sing it back, we could do 3-4 notes in a row. Anyway, I digress.) My son was nearly 3 before we heard him do anything other than laugh or cry, and he started using words after his 3rd birthday (and at first, every word he knew was a number). Now, he’s nearly 6, and what a difference a couple of years makes. One of this week’s highlights:

Gabriel: “Oh! It’s a poopies. That’s okay. Ah! It’s stuck! Help!” this afternoon, after requesting his nappy (diaper).
Me: “Oh, is it an ouch? It will help if you drink more juice. Would you like some?”
Gabriel: “No, thank you.” (He’s a stickler for the niceties.)
Me: “Are you sure? Drinking the juice will make the poopies soft, so they won’t get stuck.”
Gabriel: “No. Finished.” As he sits down, evidently much more comfortable.

It’s in my best interests to just give him the nappy, to be fair–when I don’t, he shares his displeasure (and spurting wee-wees) with the world. When I do, I get conversations like the above.

Another wonderful thing about my kids is… uh, conversations with my daughter, actually. And just her sense of humour, really. Again, this is a child who had about 10 words and phrases when she was a year old, who lost them one by one (the worst 18 months or so of my life, probably) and then slowly gained them all back, and more. She’s less proficient with language than her little brother, but even so, she’s a lot of fun. An example from last night:

Naomi: “Naomi is a fish!”
Me: “Naomi is NOT a fish. Naomi is a girl.” And I make it into a little song, because Naomi loves music.
Naomi, laughing hysterically: “Naomi is fish fish fish fish!”
Me: “Naomi is not a fish, Naomi is not a fish, Naomi is a girl, Naomi is not a fish!” still singing.
Naomi, red in the face from laughing so much, changes tactics. Setting her hand on my knee, she goes: “This one’s Naomi and Gabriel’s leg!”
Me: “That is NOT Naomi and Gabriel’s leg–that’s my leg! Mommy’s leg!”
Naomi, pointing at herself, giggling like a fiend: “THIS one is Mommy.”

And the game continues. Just for the record, she’s also the sort of person who’ll move your belongings while you’re not looking, and watch you out of the corner of her eye, giggling maniacally, as you search for them.

Another thing I’ve noticed about my kids is the… longevity? continuity?… of their personalities. My daughter is not, and never has been, one to get hysterical over minor injuries. If she falls down (flat on her face, in a way to leave numerous dark bruises) she’ll go, “Oww!” in a sort of annoyed grunt, and then she gets up and goes back to whatever she was doing. She’s much the same over routine changes (somewhat surprisingly)–if we tell her we’re going somewhere, she just shrugs, grabs her boots, and heads to the front door. Stoic, that’s what Naomi is… but surprisingly tender-hearted, as well. Falling and smashing her nose open might not make her cry, but if I raise my voice at her, I’d better be prepared to put her on my lap and cuddle her until she stops weeping… which is actually rather nice.

My son is phenomenally cheery, even when bad things happen. If he has to do something he doesn’t like, chances are, he makes it into a game and just starts laughing over it. Case in point, as I type this, Naomi’s taken a toy from him, and she’s holding it out of his reach. He’s annoyed, I can see it on his face, but he can’t help but laugh a little, as well. Getting up to retrieve his toy for him, I step on his foot and kinda kick the back of it, and I can tell it hurts him a little, and he just goes, “Oh, whoops!” and kinda grins at me, because he knows he’s right–I’m just clumsy. Sometimes when things like that happen, he tells me, “That’s okay, it was an accident!” and when I kiss him better, his response is usually, “Aww, thank
you, Mummy.”

I’m telling you, they are the best kids I’ve ever met; and if they’re a representative sample of autism, well, I vote for more autistic kids in the world 😉 I cannot think of 2 people I’d rather spend time with, than my little lovelies–and woe betide you, if you should say something about what a tragedy autism is, in front of me. Many an online commenter has had me rip them a new one over that, and rightly so–life is largely what you make of it, and when life gives you apples when it’s giving other people oranges, well damn. Just make a pie, instead of wishing you had orange juice.

The pie might take more work, but it’s just as nice as the orange juice, in the end.

And if that rather convoluted analogy didn’t make sense to you, just take this away with you–my kids are fruits. The sweetest fruits of my life so far.

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On Autism–Part 1

I’m going to call this entry that, but it’s not really about autism; I’m not a trained professional in that field, and it’s been a couple of years since I read anything written by a professional, on the subject. This entry is going to be about my 2 kids, who happen to be autistic, with just enough background information to give you an idea of their struggles as well as their triumphs. In the interests of brevity, I’m going to give you 2 examples of the areas in which they struggle most.

First of all, autism presents a… unique series of challenges, for my kids. Loud noises don’t startle them, so much as terrify them and temporarily obliterate their confidence. I spent 2 years carrying my boy everywhere outside, because the sound of a car (just driving, not turning on or back-firing or anything–it was just the sound of the motor) sent him to the ground, back against the nearest wall, hands clamped on ears, too scared even to cry. Even now, at nearly 8 and nearly 6, both of my kids stop cold and slam their hands over their ears, eyes darting feverishly, mouths slack with fear, if they hear an unexpected loud noise (especially in an unfamiliar place). I won’t lie; this can make things tricky on a good day, and downright dangerous, besides–they have been known to suddenly bolt across, for example, a parking lot, in front of the very real threat of moving cars, to escape the noise of something that is essentially harmless.

Secondly, pretty much every food known to man does, or has, made them physically sick. New (or old, but hated) tastes, textures, smells, even colours of food, can make them do anything from gag lightly to projectile vomit everywhere. They’re not faking it, they’re not trying to get out of eating their greens–my daughter spent 3 years throwing up whenever *I* ate something sloppy, like spaghetti bolognese, and my son most often gags when we try to give him sweets. (We’re odd, I suppose–I just want him to enjoy a chocolate, or a hard candy, or a gummy bear, or something.) This dislike of random textures extends to things like brushing their teeth… my son will just about let us brush him thoroughly (and he hasn’t had a cavity yet) but my daughter’s dental hygiene is very hit-and-miss, and she had several baby teeth pulled/capped/otherwise altered, to proactively protect her adult teeth. As to why we don’t just brush her teeth… have you ever tried to hold down a kicking and screaming 7-year-old, while holding her mouth open, while brushing her teeth, while pinning her hands, while stopping her from running away? There’s no gentle way to do it, and when she’s not cooperating, it’s a 2-person job. A heartless-seeming, brutal, soul-destroying 2-person job.

These, and many other challenges, can be disheartening, frustrating, terrifying, ridiculous, maddening, and occasionally, hilarious; but for all that, I have to say, I wouldn’t trade my babies for any other kids in the world.

(TBC)

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While My Naomi Gently Sleeps

I wrote this nearly a year ago, and never posted it. As it is still relevant, as my girl still prefers non-verbal communication and her own agenda, most of the time, I’ll post it now.

These are the things that make my life worth living. Just sayin’.

Life with Naomi and Gabey has it’s ups and downs, but some of the best ups are the firsts that come later than expected, but are all the sweeter for it. After 7 years and hundreds of songs and 2 toddlers, neither of whom wanted to hear my singing voice at all, I have just sung my daughter to sleep for the first time ever. I sang Brahms’ Lullabye (Guten Ah Bend Gut Nacht) as taught to me in a highschool chorus a thousand miles away (and as many years ago, or so it feels).

There is something beautiful about using a German lullabye–for which neither one of us understands the words–to bridge the chasm of silence and misunderstanding that has so often stretched between my daughter and my own heart.

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