16 April 2014

Hope and Autism

I haven't written since late February, and we're in mid-April. It's been a rough couple of months. All three of my kids had birthdays. I was sick. The SEAs all had bouts of illness. Glutened several times. Basically, life got in the way. And besides which, I had books to read, things to crochet, and TV to watch.

And honestly, shit was getting me down. Another birthday for Crackle, come and gone with no language from him. Garbage on the news. Garbage in the government. Garbage, shit, and bullshit. Everything seemed like it was exactly the same, and no improvements anywhere.

And then I snapped, blew a gasket on some people for their crap, unfriended and unfollowed some accounts that I was keeping around in the idea of knowing one's enemy, but was really just using to anger myself. Stupid. So it's gone. Cleared out.

And I'm back, hopefully more regularly, with less serious, more hopeful and hopefully some funny stuff.

On Hope, because I need some, and so do you:
Some people with children like Crackle have no hope for their full recovery. I have hope for Crackle. Why not? I mean, what's the harm in having hope for a full recovery. I don't mind the term, not because I think it's an illness, but because I think it's a social developmental disorder. And it can improve to the point where it's no longer an issue. I know it can. I have friends who have kids who have adapted so well to it that they no longer need therapies, or only remedial, catch-up therapy (like occupational therapy to help develop fine motor coordination, or speech therapy to help improve clarity). Their kids no longer behave autistically. They don't. They just don't. It's fabulous, it's awesome, it's cool, and it's true. I have one of those miracles myself. Oh, he's not quite there, but so close, it's palpable. And yes, 3 years ago, they told me it was hopeless. That there was no chance. He'd probably never talk. He'd never have a friend. He'd never have a meaningful relationship. They were wrong. And what if I'd given up? What if I'd said, "Okay. We'll teach him to cope."? He'd still be an awesome kid. I'd love him with all my heart (like I do Crackle). He'd be an amazing little liner-upper of all the things. Now? He has a friend. He says things like, "Mommy? Is tomorrow Sunday? I want to go to church to play with my friend! He's so much fun! Last week, we played with the cars." He says things like, "Oh Mommy, I love you." and "When I grow up, I'm going to watch Crackle* for you. I will teach him to talk." (Of course, he used his real name).

I remember telling Santa one year, "They're both autistic. Neither can talk. We're just aiming for a picture." This year, Pop went twice, and talked Santa's ear off.

So I said fuck this ABA bullshit, where the aim is to get a compliant child who will do as asked. I went to Son-Rise. I got hope in bunches there. If you can't get there, buy Raun Kaufman's book and watch him on YouTube.

And where did that get me with Crackle? Well, he's happier. I'm happier. He learned to nod his head yes last week. He learned to say "yeah" in the last couple of months (his only word, right now). He eats what I ask him to. He's potty trained (mostly). He's sleeping better. He's screaming less. He's making almost appropriate amounts of eye contact. He's asking to play with us. He takes us to the trampoline to jump with him instead of going out and jumping by himself all the time. He saw a little girl at my chiropractor's office yesterday, and he lit up with a big smile and gave her a hug. It's slower with him, but it's happening, and there's no reason why it can't continue to happen forever until he's no different from any one else.

Why should I give up on my dream of full recovery for him? Because he's awesome now? Of course he's awesome now. He's fucking perfect now. Like an infant or toddler is perfect. We love them exactly as they are in that moment, and continue to teach and hope and love and nurture. We don't say, "Oh, geez. He can't line up those blocks perfectly. I'm going to aim a little lower. Maybe mechanic instead of engineer." So hell fucking no, I'm not giving up my dream of full recovery. I've seen one miracle in Pop. I'm aiming for two. I am embracing their autism, getting into their world, and showing them that mine is pretty cool too.

And I am not judging those who don't believe like I do. Oh goodness no. They believe their child cannot recover. That is completely okay. They're not comfortable hoping for something they believe cannot happen. No one is. And they'll will do great by their kids. They will teach them to cope with autism. They will get the best therapies they can find for them, to help them adjust to the world as best as they can. They've got hope for learned skills, for new talents to shine. They're not without hope. They just doesn't believe, as I do, that their child could ever be indistinguishable from other people. And that is okay.

My Crackle may never get there. He may never learn another skill in his life. It doesn't matter. I love him unconditionally. And I believe that he will someday tell me his every thought. That he will someday have a girlfriend or boyfriend. That he will someday tell people "When I had autism..."

--------------------------
Oh geez. Okay, so apparently someone is mad at me, and is smack-talking me after blocking me, so I can't respond or explain. I did not say that it is, or should be, every autistic person's goal to be indistinguishable from other people. I said that's mine. For my child. And if he never gets there, I am totally okay with that. He's perfectly awesome, right now. If he ever gets to the point where he's not happy with what we're doing, I'll stop. If he ever gets to the point where he's satisfied, I'll happily stop. We're having fun. And he's learning. What's the problem again?

26 February 2014

Fuckupedness

The Olympics are over. Thank God. Well, okay, the Paralympics are still to come, but for reasons I can't understand, no one seems to give a shit about those. I wish that were true of the regular Olympics. I'm so tired of the glorification of sports. I'm so sick of how we worship at the altar of sports. It's even brought right into church sometimes. My church sang "The Good Ol' Hockey Game" as the last song on Sunday. I left in disgust. We glorify sports entirely too much. When we're spending billions on a competition to see who can slide the fastest and there are people dying of starvation, something is massively fucked up.

And speaking of fucked up, Arizona, you assholes. America already decided that you don't get to pick and choose who sits at the lunch counter. I'm stunned at all the hate coming out of the woodwork, all the people saying that it's worse to make a law requiring a business owner to serve everyone than it is for a person to be discriminated against. They spew out stupid free market lies, like, "People won't go to those establishments". Riiiiiight. Like no one ate at Woolworth's lunch counter. I even saw a gay man arguing for it this week. A libertarian. Such idiots. The useful idiots, like that gay guy, are especially frustrating. They honestly believe that a law requiring equal treatment by all to all is worse than a gay couple being told to piss up a tree when they want a wedding cake. Look, it's simple. If you're a hateful fucktard*, don't serve the public. And if you must serve the public, you can still be a hateful fucktard, calling yourself a Christian. Hang up crosses and signs that say God Hates Fags. And if those "fucking faggots" insist on shopping in your store, despite your obvious disgust, suck it the fuck up and make them a cake. Because the free market ain't gonna sort out homophobia, racism, sexism or any other hatred that is systemic.

The free market is bullshit. Because they cheat. Capitalism reinforces only greed. And greed doesn't play within the rules. Free market theory says that the market regulates itself (HA!) and that wages regulate themselves. That is, if an employer sets the wage too low, no one will work for it and wages will have to rise. Sure. In theory. In a vacuum. In practice, what happens is that the media inundates us with the message that if you don't work for any pittance you are offered, you're a lazy piece of shit. In practice, people will work for any amount if it means they are able to pay rent, even if they have to go to a food bank for food and to the government for assistance. And here's the stupid thing about that. If the government has to top up someone's income, the government is subsidizing the employer, allowing them to artificially keep wages low. If they stopped doing it, people would starve to death, and I sure as hell don't want to live in that society. Would employers raise wages? No. And how do I know that? Because in my province, employers ship in labour from China, paying them way way way less than they can get Canadians to work for, all the while saying no one here wants those jobs. Well, pay them enough that it's worth doing! Like the free market theory says they will. Bringing in outside labour is cheating.

And then there's unions. Unions can be corrupt and full of bullshit. You know, like every other institution on earth. But they actually help the economy by raising wages. If labour unites to require employers to treat them well and pay them well, the government pays out less in social services. If business is allowed to regulate itself, it doesn't, and shifts the burden to the government. And that is not fair. Not to employees, not to taxpayers. The idiots say 'Get a better job', but ffs, who do they expect will pump their gas, pick up their garbage, and serve their fast food? Sure, unions cut into the bottom line of the capitalists. That's a good thing. It means that more of the capital is being spent in the economy. When the rich hoard money, it doesn't do any good, anywhere.

I honestly don't know why people don't see this. It all seems like common sense to me.

*fucktard = fucking bastard. Not the r-word. Never. Not ever.

20 February 2014

A spectrum of racism

A Twitter conversation about racism got me thinking about how many white people do racist things and say racist things and then get really offended when they're called racist. I think there is a spectrum of racism. Each flavour is icky, but it varies from "icky like olives" (ICK! If you like them, think of something you can just barely choke down. And also, WHAT IS WRONG WITH YOU?!) to icky like a shit and staples sandwich with elephant mucus pie on the side. Okay. So it's NOT okay to be on the olives end of it. It's nasty, and it fosters an environment where it's okay to be served the shit and staples sandwich. Clear? No? Okay, then allow me to define the classes, as I see them:

Olives: These are people who are genuinely working on their racism. Any stupid racist thing they say is out of genuine ignorance, and if called on it, they will apologise, not do it again, and try to make it right. They might ask questions to figure out why what they said was racist. This is me. I'm working on it!

Pickled beets fished out of the garbage can: These are people who make stupid racist "jokes". They may have friends in the group they're joking about. They may genuinely like these people. They have no idea that their racism is harmful. They have been told, but refuse to believe it. They cannot figure out why it is not okay to retell the racist joke that their black friend told them, but they're not going to refuse to hire someone based on their colour. I used to be this person. I had friends who were Indians (as aboriginal people were called at the time). They told me Indian jokes. I retold them. Icky. Fortunately, I finally listened to reason. If you call these people racist, they will be offended and call you stupid.

Mouldy cheese: These people do not like most $race people, but they're willing to make exceptions. They blame them for their own problems. They blame them for society's problems. High jobless rate? Their fault. High crime rate? Their fault. They look at statistics in a vacuum. There are more aboriginal people in jail because there is a higher per capita rate of criminals. Houses are run down on reserves because aboriginal people can't be bothered to keep up their homes. 80% of the children in foster care are aboriginal because they don't look after their children. Etc., ad nauseum. Only rarely can these people be educated. If you point out systemic racism, the history of residential schools, poverty, etc., you'll be told that "those people need to get over it and stop blaming white people for their problems!" And "I know Kara Stonechild* and she was raised in a terrible family, and she's got a great job and doesn't blame white people. She got an education and a job! If she can do it, anyone can!"
I've never been this person. I know a lot of these people. Many of them related to me. :( If you call these people racist, they will say something racist like, "I'm not racist. I don't hate them because they're $race. I hate them because they're criminals. I hate white criminals too! Look at the stats!"

Recalled Hot Pockets: They are afraid of people of $race. They're dangerous under pressure. They are snide. They make racist jokes in the company of friends, and often in the earshot of strangers. And not the more Pickled Beets kinds of jokes that play on stereotypes, but the really mean ones. They are also resentful of the benefits that $race people get. No exceptions are made. If someone has made something of themselves in the white world, they probably did it by freeloading and special treatment, according to these people. If you call these people racist, they'll probably laugh and say, "Yeah. So?"

Shit and Staples Sandwich with Elephant Mucus Pie: This is the KKK and the like. White supremacist garbage. These people are not only dangerous under pressure, they're plain dangerous. These people want to round up the $race people and murder them all. If you call these people racist, they'll call you a race traitor and pontificate about the evils of $race, explaining why you should be a racist too. Or worse, they'll hate you too for being a $race-lover.

So again. It's not okay to be racist at any flavour of the spectrum of ick. Ignoring the grottiness of something olive-like only fosters the environment where shit and staples sandwiches are on the menu. So call it out when you see it, and fucking listen if someone tells you you're being a racist asshole. And if the person calling you out is a member of $race shut your olive-hole and take them at their word. If you don't understand why what you've said is wrong, that's okay. Don't do it again, and find a way to ask someone with a clue. I recommend, "OK. I said X. Person Y called me out. Obviously, I screwed up, but I'm not sure exactly how. I'd like to avoid being an asshole, and learn from this. Would you mind telling me what I've done?"

Okay? Thanks.

*Fictional name

11 February 2014

Budget Day Anger

Holy CRAP do I ever have a hard time being a Christian on budget day. Love my enemy? I loathe conservatives. The heartless, cold disdain for anyone but themselves is infuriating. You know how I say anger comes from fear, right? Well, that's certainly true of my anger with the Cons. I'm afraid of what they'll do to this country. I'm afraid of what they're doing to people right now. I'm afraid for the youth, the poor, the environment.

I'm angry on behalf of the trans community for what happened to Avery Edison. A trans woman locked up in a men's prison?! Are you even kidding me? Fortunately, the NDP cares, and between Randall Garrison and Peggy Nash, they got her the hell out of there. I'm angry because I'm scared of what happened to her, and that it could happen again. That's not okay. Ever.

Anger doesn't work for me. I can't use it to motivate myself. Not often anyway. I'm much better with a quiet determination that comes from looking at something, deciding I don't like it, and working to change it. Anger usually leads to me throwing things, kicking things, drinking too much, and swearing at people. Often the ones who deserve it, but also plenty who don't.

I'm filled with hatred and disgust today. It's not working for me, but I'm still doing it. I'm utterly livid with the people who think that government employees are leeches. That they milk the system. Take tons of extra sick days. Etc. It's bullshit, of course. In part I'm mad because I know how hard my husband works, and how important his project is. In part I'm mad because I know that they're trying to sell public sector cuts by turning people against hard working people like Tony. In part, I'm mad because I hate that our country is filled with people who are so scared that someone might be getting something "for free" that they rejoice when their jobs are cut.

This is Canada now? The US with better heath care and without the guns?

I don't like it. Not one fucking bit. And right now, I'm MAD. Because I'm scared that I'm stuck with living in a place I'm growing to hate. And before anyone chirps at me to leave if I don't like it, I would. But I have disabled kids. No one will take me. Because of policies just like the ones you vote for.

Harper was right about one thing. I won't recognize Canada when he's done with it.


07 February 2014

What to say to parents of special needs kids

Continuing yesterday's train of thought, what should you say to a parent with a special needs kid? Fucked if I know. Someone is always going to get offended. I'm good with, "Cute kid. Has some issues, eh?" Then if I feel like unloading on a stranger, I can. And if I don't, I can say, "Yup, sure does". Conversation over.

Some people will be offended if you completely ignore that their kid is different. Someone else will be massively offended that you had the nerve to say something about their kid being different. Thing is, we're raw. We've been through the wringer. We've had doctors blame us, talk down to us, yell at us, threaten us with child protective services. We've had family question our every decision. Blame us for every setback. We blame ourselves. We've lost friends. We've cleaned up more than our fair share of messes. We're overtired. We're overstressed. We go to more appointments, see more specialists, manage funding budgets and schedules. We're paying for treatments we can't afford on the thin hope that it might help make our beautiful baby* feel a little better. Some of us have other jobs on top of this. Some of us gave up careers to do this. Some are bitter about that. Some aren't. Expecting all of us to feel the same way about something is stupid (you fucking monster - see previous post). We're not a monolithic group. And the don't do this or you'll offend us posts miss that. OF COURSE there are some things we're sick of hearing, or as a general rule are likely to be taken in a way not intended by the speaker. 

This was all brought to you by this list on the Huffington Post yesterday. So in the interest of being helpful to other parents who need snappy comebacks to ignorant bullshit, and people who might not want to be ignorant bullshit spewers, I give you this:

1) But he looks so normal! or You'd never know to look at her!
What the parent might think you're saying: Stop whining. Your kid is fine.
snappy comeback: She hides it well in public. You could learn a thing or two from her.
Instead try: I never would have known. I bet you've done a lot of work to see that happen!

2) Is it genetic?
What the parent might think you're saying: Is it contagious?
snappy comeback: Nope. Contagious. He got it from a public toilet.
Instead try: biting your tongue. It's not your business.

3) "He's going to grow out of it, right?"
What the parent might think you're saying: OMG! HOW FUCKING AWFUL. I can't stand the idea that he'll live with this forever! That would be a tragedy. 
snappy comeback: Oh yes, but it'll come back every full moon.
Instead try: Is it a lifelong thing? - asking is always better than any question that ends in "right?"

4) "Did you cause her to be in a wheelchair?"
What the parent might think you're saying: This could never happen to me, so how is this your fault?
Not my issue, but I'll take a stab at it:
snappy comeback: No. It was her choice. She's really lazy.
Instead try: No clue. I'm thinking this is another case of just don't, it's not your business.

5)"My uncle's brother's nephew's cousin has autism, so I know what it's like" or "My nephew's cousin has autism, too. He's really good at math. What's your son gifted in?"
What the parent might think you're saying: Oooh, does he do tricks?!
snappy comeback: Diarrhea. He's excellent at that.
instead try: "Were you lucky enough to get a savant?" Please learn that most autistic people are intelligent but not savants. Actually, I wouldn't say that at all. Well, I would, but my special autistic talent is offending people.

6) "Why didn't you stop having kids after the first one?"
What the parent might think you're saying: Why did you risk this awful tragedy happening again?!
snappy comeback: Why didn't your parents stop before the first one?
instead try: minding your own business.

7) "God only gives you what you can handle." 
What the parent might think you're saying: God is punishing you. But you're not so overwhelmed that you need my help. Or my tax money.
snappy comeback: Oh sure, because no one ever commits suicide.
snappy comeback: Then God's an asshole.
snappy comeback: Oh, thank you for your unsolicited platitude. I feel so much better now.
snappy comeback: You're right. He gave me you for babysitting. Enjoy them. I'm going shopping. Alone.
instead try: Do you need some help? How can I help? If you're a stranger, try, "I hope you have a good support network! No? Tell you what, here's my email address, I will see what kind of resources are available in the community, and if you're interested, email me and I'll send you some links."

8) "Have you tried juicing?" or "Why don't you watch this movie about the keto diet?"
What the parent might think you're saying: Do some research! There's lots of options out there. Are you stupid?
snappy comeback: Oh, thank you, doctor!
instead try: This one is tricky. Some people really don't appreciate these suggestions. I'm fine with them. I'm find with the original, actually. Maybe, "Hey, my friend got a lot of symptom relief with X. If you're interested, I could give you her email address" (Symptom relief is the key word here. No one will think you're doing the cure thing if you use this term)

9) Comments on work, such as: "It must be nice coming late" after running around all morning at appointments or "It must be nice getting to relax all day since you don't have a job."
What the parent might think you're saying: You're a lazy shit.
snappy comeback: Oh yeah, it's all daytime tv and bonbons. You know, between the OT, SLP, BCBC, PT, cleaning up the pee and vomit, comforting him after seizures, cooking a separate meal for each kid because of allergies. Wanna trade?
instead try: Busy morning, eh?

10)  "He's one of God's special angels."
What the parent might think you're saying: He's one of God's special angels.
snappy comeback: Special ED angels, maybe.
snappy comeback: An angel who can swear like a sailor.
instead try: shutting your cake hole.

11) "How in the world did you break both your legs?"
What the parent might think you're saying: I'm profoundly ignorant. Please school me.
Again, not my issue, but I'll try.
snappy comeback: Kicking morons who ask stupid questions.
snappy comeback: I just stood up one day and they snapped. I think it's contagious.
instead try: Nice hardware! (Beware. This will be checked closely for sarcasm.)

12) "I don't know how you do it. You are a great mom" or "Do you really start his IVs, oh dear, I just couldn't possibly do that!"
What the parent might think you're saying: Please don't let this happen to me. Please don't let this happen to me. Dear God PLEASE don't let this happen to me.
snappy comeback: Thank you.
Seriously? WTF, other parents? This is a nice think to say. The first part, anyway. The "I couldn't possibly do that" part needs its own snappy comeback.
snappy comeback: Good thing she's not your kid then!
instead try (because apparently some people have issues): You're fabulous. Can I buy you some chocolate?

13) "I can't believe you give her (insert medicine or medical procedure here), I would never give that to my child."
What the parent might think you're saying: You're a shitty parent.
snappy comeback: Thank you, doctor. What's your specialty in, again?
instead try: Whooo. That must have been a hell of a decision.

14) "I nearly had a stroke" or "I think I'm going to have an epileptic fit" or "Are you retarded?"
What the parent might think you're saying: I'm very rude. Please embarrass me in front of all my friends.
snappy comeback: You mean, like my kid? Or in that HA HA way?
instead try: I think my heart about jumped out of my chest. I'm pretty sure that's never happened to anyone. You should be safe.

15) What the hell happened to my numbering system?

*I'm not infantilizing the kid with autism. EVERY kid is our baby. When they're 40 and we're 65, they're our babies. Chill.

06 February 2014

Every What Not To Do post ever

You know those "What not to say in X situation" posts that pop up here and there?

Every What Not To Do post
Everything you're saying is wrong. You're trying, we get that. But you've been offending people mightily, and they won't tell you. So I will, because I can speak for all people in Situation X.
1) Don't say totally inappropriate bullshit. "Is your kid a retard?" is probably going to be taken as an insult.
2) Don't say totally innocuous things either. "Oh, your child has autism. So does my brother. Mom tried a gluten-free diet with him and it seemed to help". You. Fucking. Monster. How the fuck dare you try to tell me what's worked for someone you love?!
3) Don't say something no one who is not under the influence of some serious drugs (or should be) has ever said. "Doctors? Pfft. What do they know? Take him to an exorcist. It's demons, I tells ya. Demons"
4) Don't say the two or three things everyone always says because they have no idea what else to say. "Oh, autism. I'm sorry to hear it." Really?! You're sorry my kid will have a lot more challenges than the average kid? You. Fucking. Monster. I love cleaning his shit off the walls. How dare you insinuate there's anything to be sorry about?!
5) Do NOT invoke God. Saying something that you've been taught from birth is comforting makes you a fucking monster.
In summary, thanks for trying, we appreciate the effort, you fucking monster. It's cute that you think you're a good person. Please do not ignore us, but never say anything on this list.

Every What Not To Do Comment section

So what do I say?!
- helpful ally

     If you can't speak without offending someone, you should remove yourself from the human race.
     - TrollMom

     Shut up, TrollMom. I'm in Situation X, and even I don't know what to say sometimes
      -TrollFeeder

Waaaa waaaa waaaa. All this bitching. It's not so bad. Shut up, put the internet away, and go play with your kid. (You fucking monster)
-ComplainingAboutComplaining

Well, if you don't want anyone to ask about Situation X, stay home.
-Mr.Helpful

     But I need groceries! How am I supposed to get groceries?!
     -Captain Obvious

          Order online
          -Mr. Helpful

          Seriously?! You just want us invisible so we don't offend your precious sensibilities. Stop being a douchebag. And also, I live in a place where there's no grocery delivery. So what now, Mr. Helpful?!
          -OffendedOnCaptainObvious'Behalf

I still don't know what to say.
-helpful ally

     Try "Hi"
     -Sarcastro

           If you're going to be like that, it's no wonder people are rude to you and your retarded kid. I tried!
           -AllyNoMore

                 I don't have kids.
                 -Sarcastro

                        Why are you even here?
                         -AllyNoMore

What do you mean, don't invoke God? Jesus is the Healer of All. I will pray for you, that you come to see the glory of our LORD Jesus Christ. I'm so offended that you would dare to oppress me like this.
-FundieMom

      Fuck you, FundieMom. You're too stupid to live. Go play with your invisible friend in the sky and leave the rest of us alone. You fucking monster.
      -Atheist

             Enjoy Hell, you fucking monster.
              -FundieMom

            Come on, Atheist, you're being an asshole. Please be respectful of others beliefs.
            -Headbangingondesk

                  HeadBangingOnDesk: Your name is offensive to autistic people who stim by banging their heads. You fucking monster.
                  -AlwaysOffended

      FundieMom, you're giving the rest of us a bad name. Please be considerate.
      -Luna

            Why should I?! I've got the right to be publicly religious! I've got the right to talk about Jesus whenever and wherever I like. How dare the OP tell me I shouldn't?!
            -FundieMom

                     Because you're calling yourself Christian, and compassion is a big part of Christianity?
                    -Luna

                          Not at my church. It says in the Bible that the only way to Heaven is through Jesus, and if you don't have Jesus, you're going to burn in hell, and your kid is probably retarded because of gay people. If you pray hard enough, Jesus will heal your retarded son.
                          -FundieMom

                                 He's not retarded. You're missing the point. And that's an offensive word.
                                 -Luna

                                       I didn't mean it offensively. It's a clinical term, and I was using it that way.
                                       -FundieMom

                                      You were using it clinically when you were explaining that it's caused by sin? Okay...
                                       -Luna

                                            Exactly. I'll await your apology.
                                            -FundieMom

And then I drink a bottle of wine.

29 January 2014

My Feminism Includes Trans Women

What the hell, feminists? Did you know that we're being assholes to trans women? I didn't. But I do now. Privilege got me. I didn't know. Sorry. I'll work on it. I don't think I've been an asshole myself, but I have been clueless! Big time. Because it's not my issue, and I don't have a problem with trans women. Kinda assumed, incorrectly, that most other people didn't either. Figured they had it about as bad as gay people, which is bad enough. But no.

You know what? If someone dresses as a woman, changes pronouns from him to her, wears women's shoes (seriously, you don't do that unless you're a woman or a transvestite!), risks life and limb, risks friends and jobs, or any combination thereof, she's a woman. Please have the courtesy to just live and let live.

And when you see this bullshit, don't let it go:
Cathy is a real piece of work.


You see this? This bully, this feminist bully, gave Sophia's birth name, place of work, and asked people to destroy her business via Yelp.

This needs to stop. And only we can stop it. Like Sophia says, by calling her out on her bullshit, which this is.

edited to add:
Oh and someone helpfully pointed out to me that there are trans women of colour too, and they really have it rough. My feminism includes EVERYONE. I don't write about race issues much, because I'm pretty sure I couldn't do it any justice, given my upbringing and my current community is so white... so very very white. Like you can't take a picture with the flash on because the glare off the people's faces is s... Okay. I exaggerate slightly. There are some FN people and I think I saw a black guy last week.

Let me say this once to be perfectly clear: I have a considerable amount of privilege being white and cisgendered. Even being married to a man gives me a certain amount of privilege. I have money. Lots of it, comparatively. Yes, sometimes all fucking hell breaks loose and we struggle for a few months, because we have a mortgage on our little townhouse, and three kids with autism who are expensive. But we're not in any danger of homelessness or not eating. Like our neighbours are. Or like we once were. I recognise my privilege most of the time, and don't mind being called out on it when I miss it. Please do!

So, I know there are a lot of things I don't know about. I know that FN women, black women, Asian women, trans women, Muslim women, any number of other categories of women, and any cross-section of them, have different issues than I have. And I know that I know jack squat about them. I'm reading. I'm learning. And I'm trying to boost the signal when I see them asking me to. Other than that, I'm shutting the hell up, because ffs, I have no clue. And that doesn't for one second mean I don't support each and every woman on this planet. Even the ones who are actively against us (*cough*Sarah Palin*cough*). I'll call them out on their shit, but I won't put up with anyone shooting misogynistic slurs at them.

28 January 2014

CONtrol

I find it remarkably ironic that whiny asshole cons are complaining that no one should get home delivery by Canada Post if people in rural areas don't. If they don't get it, no one should! Because everything should be equal. But socialism is EVUL...

Maybe that's why they're opposed to abortions for women. Because it gives us power they don't have.

Someone want to explain to me another reason why I can't buy RU486 in Canada, even though it's been legal since 1989 in Europe? It's not expensive. It's not socialized medicine. And it's certainly not about the babies, because Cons do not give the first shit about children. They cut funding to childcare the second they got into office. It's about power. It's about control.

Oh sure, there are some dupes. Some idiots who really believe it's about the babies. They're the useful idiots. The true believers. I've got a couple of them in my extended family (one of them has even talked someone out of two abortions, and adopted her babies). She'd take in a lot of foster kids too, if she were allowed to hit them. Not kidding. You have to sign something saying you won't spank a foster kid, and she thinks it's her god-given right to do so, so she won't. Yeah. Quality. Anyway, she and her ilk well and truly believe it's about life. And they're so wrong.

If it were about life, there'd be support for pregnant women, midwife care for all. If it were about life, there'd be maternity leave for all. There's only mat leave if you've worked enough hours to qualify for EI, and then it only pays 55% of your wage. That's not enough for most women. It's not ANY for some women. Like me when I had Pop. I didn't qualify for EI because I only worked 12 hours per week. Even though I'd worked there for several years, it wasn't enough to get a single cent. So I worked until the day I had him, and went back after 6 weeks, using my sick leave (and talking them into giving me the previous year's unused sick leave) to get those days. If it were about life, there would be a guaranteed income for pregnant women and for young families. So the kids could eat properly. So the gestating mother could eat properly. If it were about life, there would be prescription drug coverage for all. There would be dental coverage. There would be comprehensive drug and alcohol rehab, without the shaming. There would be some sort of a fuck given for women in abusive situations. There would be programs to help men who abuse, again, without the shaming.

This is about controlling women. Forcing them to give birth. And there's no better proof than what went on in Florida Texas. Keeping a woman on life support to incubate an fetus that had no hope of living. That's not life. That's control.

And it's ironic. For supporters of the party of CONtrol to believe they're opposed to socialism because it's so controlling is lolsob ironic.

So the CMA is actually trying to have RU486 approved in Canada. Good luck with that. The party of CONtrol will be sure to quash that with lies and bureaucracy. Using the media they own to vilify the women who want it. Because how dare they get to control what happens in their bodies?!

h/t to Dammit Janet

25 January 2014

Vaccines, again.

I am so very tired of the vaccine debate. I'm so sick of the whole subject I've muted all reference to it on Twitter and refuse to engage on FB. So I'm going to get this out once and for all:

I simply do not understand why my fellow lefties, who are so certain that Monsanto, Nestle, Philip Morris,  Chevron, Wal-Mart, etc. are evil motherfuckers who don't give a flying fuck about you, your health, or anything but their bottom line, can just say "Oh sure, vaccines. The companies that fund the studies and make the profit say they're safe, so I'm sure they are". WHAT?! The tobacco science here is plainly obvious to anyone watching carefully. The CDC's vaccine division is completely seeded with pharmaceutical corporation personnel and vice versa. That makes pretty much every CDC study suspect, as if they weren't already with Poulson running off with the money from them (but the studies are totally sound! Yes, because a study in which fraud took place is completely free of suspicion.)  Elias Zerhouni, used to be the director of the National Institutes of Health (NIH) He's now head of Sanofi-Aventis' research labs. Pretty much can't trust them either. So what's the argument?

Because science. Science funded by those set to make billions off their sale. That's the best you've got?

I am NOT saying they aren't safe for anyone. I am saying I don't trust them any more than I trust any other massive capitalist agenda.

Ya know what else? It's the advertising. And the fear tactics. And the "There are no studies that say they're not safe" lie. I vaccinated my first kid until she had a major regression from it. That day. I vaccinated my second kid even after that because I believed the doctors when they convinced me I was misremembering (despite my journal *headdesk*) and that the vaccine simply could not have done that, and even if it had, the odds were astronomically against it happening again. It did. Worse. Much worse.

I'm NOT saying vaccines cause autism. I am saying that some people might be genetically susceptible to significant damage from vaccines because of the way the vaccine causes an immune response. Put 20000 randomly sampled people in the sun for 30 minutes. If 5 of them get a sunburn and the others don't, it was still the sun that caused it. Because some people are just genetically predisposed to it. So don't give me this "the science is in" bullshit. It's fucking not. I want more studies. I want studies looking at what happens to kids who have autism in their families when they are vaccinated. I want studies looking at the rate of autism among the unvaccinated. No, not a 'we won't vaccinate these kids, but we will vaccinate these other ones'. I recognise the unethical nature of that. I want one where they take the vaccine exemption forms that are required by US school districts, and go find out what the rate of autism is amongst those kids. I want to know how many people who get the flu shot get the flu that they were vaccinated for. I want to know what the rates of cancer are in people who regularly get flu shots.

AGAIN, not saying there's any connection. Just that I want to know. Because I just plain don't trust companies that make billions of dollars to have my best interest at heart. And I do not trust governments to have our health as their top priority when those billion dollar corporations are the ones giving them jobs when the leave government. And if that makes me a conspiracy theorist, a whackjob, or whatever, so fucking be it. I am quite frankly baffled by other lefties who are happy to trust the tobacco science and worse, scream invectives at those who aren't.

Mmmkay?

update: How's this for a study showing they're not safe for fetuses? Now how's that for irony? (see next post).

Random update

So I'm tired. Utterly exhausted. And that's why my blogging has fallen off. It's not that I don't care about all the shit going on, that's for sure!

Medically, I'm kind of not doing the greatest. And my doctor isn't taking me seriously. She says it's stress. Which, while possible, seems unlikely to me, because I do hold a pretty good attitude about most things. And it doesn't account for my very low Vitamin D level. Stress isn't known to lower Vitamin D. Or cause any number of my other issues. But whatever. She's wrong, so I'll figure it out on my own. :)

Pop and I have been hiking a lot, and going to church on Sundays. I've found a new church that I like. I don't love it yet, but I think that'll come. Hopefully they are better off in the cash department! The ministry is awesome - good sermons! good Sunday school! YAY!



Crackle is... well, he's Crackle. Not terribly much new with him, except that he's saying "Yeah" fairly usefully, and the odd time, he's said, "No" which is fucking beautiful. My heart melted in joy when I asked him if he wanted a bath and he said "No". Best day in a long time! He's been enjoying the playground a lot. Thank God it's been a mild winter! Seems we're the only place on the continent who can say that, but I'll take it!




19 December 2013

So very tired

So much shit going on. So little time. I've been so busy with Christmas, the kids, employees who've been sick, etc.

Canada Post: Seriously? WTF? Yes, I know. Pitney Bowes. Money. Duh. Harper sucks. Old people want fresh air and exercise? Sure, in the summer. In the winter? Can't see how that could go wrong! I hope they sue the fuck out of the government for every injury.
Pope Francis: LOVE.
My attempt to find a church that fits: *headdesk* We actually left mid-service last week because the perfume/cologne was so bad I couldn't breathe. And that was at our second choice. Our first choice emailed to let me know they were serving pizza at Sunday school so I should just stay away. I'm seriously considering looking into what it would take to start up a ministry near where I live, since there is only one even slightly progressive church out here, and it has a median age of about 70.
Duck Dynasty: I had to ask people what it was. Seriously? People watch that? Why? Seems to me they're just hoping he'd say something stupid like he did.
American bullshit: Ongoing.
Canadian bullshit: Ongoing.
BC bullshit: Enbridge pipeline. Honestly, this is a clusterfuck of a disasterfuck waiting to happen. OMFG. If I didn't have kids, I'd be up there, forming part of the human wall that will come up.

My Mom's cancer finally got to the point where the doctors decided to do chemotherapy. I don't know what changed or why. All I know is she's on chemo now, and she's having "issues". She talks to me a bit, but not much. She's in Regina, which is too far away for me to easily visit.

I'm so fucking tired.

My middle child, Crackle, isn't doing so well on the latest round of biomed treatments we're trying. He's not sleeping. He's screaming more than usual. On the bright side, his receptive language skills are getting better, and I think he's been babbling. That's HUGE.

Pop is getting more and more hyperactive by the day. On the bright side, he seems to be seriously musically talented. That's cool. He's also good at math.

Snap just finished her first semester of college. She got 60 in one class (intro to digital media) and 88 in the other class (pop culture and media). If the intro class hadn't been at 8:30, she'd have done far better. She's doing well on some new meds, hallelujah, and is actually out at a party tonight. OMG.

It's appointment after appointment. Sometimes, all I want is normal. That's not to say I'm not happy for the most part. I am. I just want my house back. I'm tired of having in 6 different people in a week. I'm tired of appointments with specialists. I'm tired of managing meds and supplements. I'm tired of doctors who all think they're the only one who knows anything, and that I and all the other doctors are idiots. I'm tired of arguing with idiots. I'm tired of learning about autoimmune diseases, mitochondrial disorders, microglial activation, vaccine damage, etc.

I'm just so tired. And that, my dear comrades, is why I'm not blogging.

12 November 2013

Catholic Whining

I have two separate ideas for posts going through my head, and they're not compatible or related to each other, and I can't seem to make either work. So I'm going to just wing it. The first is about my mixed feelings about Remembrance Day and the second is about the Catholic Church. The Catholics seem easier to blog about, so...

I've heard rumblings that the conservative branch of the Catholics (like that asshole Bill Donohue, whose name I couldn't find, but Googled "fat conservative asshole" and it was in the second from the top) aren't happy with the new Pope. I like the guy. I'm not saying I'll go back to that church, because God knows there is still a long way to go (like ordaining women, making amends and reparations to the children who were abused, etc. ad nauseum). But he's made a good start, and I respect him for it.

The last few Popes have been icky. The previous one especially. I don't know why he stepped down, and I can't begin to guess how this guy was elected, but it was during the reign of JP2 that I left. Conservatives loved that guy. Ultra-conservatives loved Pope Palpatine Benedict. Francis? They're not a fan. And the whining is epic.

Aww. Poor Ms. Kurt. (Shouldn't that be Mrs. Kurt? Tsk tsk!) Poor butthurt Ms. Kurt. She doesn't like him. And why?
“It seems he’s focusing on bringing back the left that’s fallen away, but what about the conservatives?” said Ms. Kurt, a hospice community educator. “Even when it was discouraging working in pro-life, you always felt like Mother Teresa was on your side and the popes were encouraging you. Now I feel kind of thrown under the bus." 

Is she even kidding? No. She's not. But what about the conservatives? Sounds a lot like, "Why isn't he hating the same things I hate?" She feels thrown under the bus because he's not an asshole to women who choose what she considers to be a sin? Really? Wow. Entitled much?

"...they despair that after 35 years in which the previous popes, John Paul II and Benedict XVI, drew clear boundaries between right and wrong, Francis is muddying Catholic doctrine"
FFS. You mean the new guy says that there are shades of grey? OH NO. However will they manage?! Maybe, just maybe, they could rely on their own consciences instead of saying, "Yo, Pope! Who do I get to hate today?" Francis, like Jesus, is rather awesome at not condemning people. Oh sure, he'll boot them out of the priesthood if they directly disobey the orders of the church hierarchy, but I didn't hear him saying that guy would go to hell.

But you know who the Pope doesn't like? People who cheat on their taxes.  On that, he quotes Jesus saying that some sinners deserve to be tied to a rock and thrown into the sea. (Okay, he was talking about graft in the Vatican, but cheating on taxes is also stealing from the state.)
Christians who lead “a double life” by giving money to the Church while stealing from the state are sinners who deserve to be punished.
The Pope described people engaged in corruption as “whitewashed tombs”, explaining that “they appear beautiful from the outside, but inside they are full of dead bones and putrefaction.” A life based on corruption is “varnished putrefaction”, the Pope said.

Ooooh, them are fightin' words! Cons don't like being told they can't take bribes!

You know what's most interesting about all of this? The idea that people seem to be complaining loudly that this Pope isn't reinforcing their hate and intolerance and sin (I'm sorry - not really - but hate is a sin). They don't like being told to feed the poor, but they really hate being called out on their intolerance. Whiny Ms. Kurt doesn't like it that she's not being reinforced on her harassment of women. The internet mouthpieces don't like it that they don't get a simple way to say, "I'm right. You're wrong. You're going to hell! The Pope said so!" Sarah Palin is "taken aback" by his liberal statements, and she's not going to even believe he said those things. The media must be lying. Sure.

Here's the thing: Jesus said "feed the poor". The cons say, "Yeah, but he didn't say that Caesar should do it!" *sigh* Yeah. There's a difference. We live in a democracy, right? The government supposedly IS the people. The people who the cons say are mostly Christian. So why why why are they opposed to food stamps? And welfare? And various other programs for the poor? Why are they vilifying the poor? The mind boggles.

27 October 2013

Rambling about this and that

GEEZ. This has taken me a whole week to write. Busy, busy Luna.

I went back to the Option Institute for another course in the Son-Rise Program. Last week [week before last, now], I flew to New York (via Vancouver and Toronto) and then took a bus and then a cab to get there. It was a massive pain in the ass and the wallet. And it was worth every minute and every cent. I've been back for three days, and already Crackle is making better eye contact. Not kidding. Even the employees have mentioned it.

Maximum Impact, the name of the course I took, is amazing. It's about transforming myself into a force of nature, someone who can make anything happen. Watch the fuck out, Dr. Fuckface (see previous post). It was very freeing and very empowering. It seems like common sense, and to some extent it is, but breaking it down in to tiny steps is seriously useful. They did that very well, and I walked away from it feeling much calmer, more relaxed, and just plain sure of myself.

My favourite part is remembering that I can be happy about anything, and that it's okay if I'm not. But if I want to be, I CAN. And that's really, really empowering. So many lessons though. "Love First, Act Second" might be my new words to live by.

And you know what's really truly cool? The lessons we got at church last week and this week fit in perfectly with the Son-Rise program principles. Today, the scripture was the story of the Samaritan woman whom Jesus approached at the well and asked for a drink of water (*gasp*). He knew her for who she was, an outcast among outcasts, and loved her. Not despite it. But for who she was. How very much like the teachings at Max Impact. To love people as they are, for who they are, not despite who they are. To accept them wholeheartedly.

And last week, the story of the woman who came begging for healing for her daughter, someone afflicted by demons (which, by the way, is what some people still believe autism is. I'm not kidding. SMH.) Jesus sent her away and then changed his mind when she said that even dogs are fed by the crumbs their masters drop. Damn skippy. That's a lady who can fight for her kid. MY lesson was that a mother's love can change anything, even the mind of Jesus. But I think the message was supposed to be that Jesus decided there and then that God's love was for everyone.

You know what's kind of awesome? I didn't get angry this week. Not once. Oh sure, plenty of crap happened that I didn't like, but I didn't choose to be angry about any of it. Not Duffy/Wallin/Brazeau/Stevil. Not the rapes at UBC. Not the "Oh, we're not telling you how that law will affect you until after it's passed" thing that Clement came up with this week. None of it. I just decided that a) I'd do what I could, which was very little except boosting the signal; b) My anger wouldn't help anyone, including myself, so nope, not doing it. Not that it would be bad or something if I did. I just didn't want to, so I didn't. I like that.

I have learned that anger comes from fear. Every. Single. Time. Though, I'm openminded enough to work through an example that someone thinks is something else. Not to prove I'm right, but to see where I'm wrong. If you'd asked me a year ago what scared me, I'd say "dentistry and rats". Nothing else. I wasn't scared of anything, and fuck you if you said otherwise. Then ask me what makes me angry. The list is much much longer. I could go on for hours about shit I was mad about.

I'm angry with Dr. Fuckface, for example, because I'm afraid for my Mom's life, and I'm afraid of what he's doing to other people. I'm angry with Stevil because I'm afraid of what he's doing to Canada. I know I won't like it, and I'm afraid to live in the awful dystopia he seems to be creating. I'm angry with Crackle (not anymore, but I was) because I was afraid that his noises would mean I would lose my hearing, or my sanity. Or first one, then the other. Etc. This is simplified, by the way. It's much more complex. But this is the boiled down version. And so screw it. I'm deciding not to be as afraid as I used to be. If Stevil wrecks Canada, I'll live. If my Mom dies, it'll suck, but I'll live. If Crackle never stops screaming, I'll wear earplugs and miss the UPS guy, but I'll be okay. And in the meantime, I'll work my ass off to see that none of these things happen. But I'm not going to fear them any more.


11 October 2013

Throat Punch Thursday (a day late): Doctors. Again.

Dear Mom's Doctor (henceforth to be called Dr. Fuckface),

Dr. Fuckface, you have been my Mom's doctor for over 40 years. For many years, until the pelvic that made me cry, you were my doctor. I hate you. I hate you with the fury of the fire of a thousand suns. I hate your children. I hate your parents. If I could go back in time and wipe out your entire family line, I would. I hate you that much.

I know I'm supposed to be embracing happiness, and I can definitely talk the talk, but I'm mad, so fuck you. Maybe this letter will help.

Right, so I hate you. I mean, I really fucking despise you, your stupid accent that should have gone away by now, your stupid face. And why? Other than the aforementioned pelvic from hell? Other than totally missing that I had Celiac Disease for years? Other than declaring my favourite uncle in perfect health the day before he died of a massive coronary? Other than telling my Dad, who had heart disease, that he didn't need to be on a special diet? Other than all that? Because you suck. You suck as a doctor. You suck as a human.

When my Dad died, of totally preventable heart disease (that you also missed), you phoned my Mom on the day of the funeral. I was almost ready to forgive you then, but then it turned out you were calling to offer her anti-depressants, not condolence. Fuck off. She was grieving. Not clinically depressed. You shill.

When she was getting sicker and sicker, her kidneys failing, you blamed it on grief. You never once noticed that she was losing weight. Until she told you. And you said, "That's normal, dear. You need to eat more." When Mom told you she was eating fine, thank you, you literally guffawed at her. You condescending assclown.

When Mom was down 1/3 of her body weight, it finally clued in that she might be sick. By then it was too late. The cancer had destroyed her kidneys. Of course, you and your band of fucknuts didn't know it was cancer yet then. But had you done a simple blood test back when she first complained, you'd have seen what her kidneys were doing. Oh, and I'm no doctor, but even I know that peripheral edema is a great big warning sign. But you told her it was hot outside, and she should sit down more. And you know what else? This is your fault. Because you missed it. And you know why you missed it? Because you refuse to listen to more than one "complaint" per visit. Do you not see how fucking asinine that is? You cannot ever see the big picture if you won't listen to your patient tell you how she's feeling! But you want people to come back over and over, to make you more money. You sleazy pusbag. What's worse is that there's a 6 week wait to get in. There's simply no way you can be an effective doctor for someone who is actually sick. Not the sniffles. Sick. You slimy, greedy, motherfucker.

So Mom went on dialysis. And got test after test to get a transplant. Which she was never qualified for, but that's a letter to another rectal wart of a doctor. And you continued to do nothing but her annual physical and the odd sinus infection. That's fine. That's your job. To do the things I could do if they let me. Never once did you apologise to her for the predicament you got her into. Never once did you even talk to her about what was going on.

Except for the original test. Oh, that was fun. You told Mom over the phone what it said on the test. You literally read the test result to her, without interpretation. You said, "... and that could be from your lymphoma or..." And Mom thought she had lymphoma. She called all her family to tell them. I came out from BC to be with her. I came to her next appointment and asked about that last test. And that's when I figured out she didn't have the cancer you told her she had! Because of your casual use of the word "your", Mom thought she had cancer. Even after you read it again, she would have thought that had I not been there. Just for that, Dr. Fuckface, I hope you are misdiagnosed with something so you can feel the fear and then the embarrassment you put my Mom through. You insensitive, heartless, ratbastard.

And what actually prompted this letter of love today? Mom went to you for her annual exam. God knows why, since her nephrologist and oncologist basically handle all her care, but she went. And she brought the info about the cancer, since just last week did the oncologist decide it was time for chemo. She had a simple question about a lab, and just needed to talk for a second. And you told her to put it away. You interrupted her in her first sentence to tell her you would not talk about that. At all. You wouldn't even let her tell you she was scared. She's been seeing you for over 40 years. And you wouldn't let her talk for 5 minutes. You son of a syphilitic pig fucker.

I hope when you die, you die alone and in pain. Confused and lonely. Because apparently you think that's good enough for your patients.

All my love (which is precisely none for you),
Luna

30 September 2013

Taking "conspiracy theory" to a whole new level

You ever see something so massively ridiculous that you have to laugh, and then you start to feel sad that some people are just so unbelievably fucked up? That was my morning reading facebook while one kid ate and the other watched Word Girl.

The original poster is a friend of mine. I knew she was a little off... but I had NO idea this much.

The second comment is also from the original poster. What I'm hoping is that the first comment is actually someone telling her that her thought processes aren't normal. The third comment gave me momentary hope for sanity. But the fourth comment is from the same person as the third. *sigh*

Being ever helpful, I'm seriously considering offering Epic Disaster Insurance. The way it would work is if something awful happens and knocks out all the electronics, my army of awesome people would deliver water and food to people in their areas who had bought my insurance. For a mere, I dunno, say $20/mo, I would have someone in their area stockpile water and food, and bring it to them should there be a worldwide disaster. For an extra $10/mo, they could pay to say "one last thing" to a loved one in a different city. So if you think the world as we know it will end, and you have a sister in Seattle to whom you need to say, "I love you" or "I'm sorry I banged your husband" one last time before you die, I'll have that handled too.

*sigh*

29 September 2013

Compassion, Son-Rise style

Pop and I braved the rain this morning and went to church. We went to Fairfield United this time and took our little dog with us. It was a Blessing of the Animals service, where people are encouraged to bring their animals for a blessing. It was fabulous. It was an intergenerational service, which means there is no Sunday School, and the kids stay upstairs the whole time. They make these more kid friendly by either having no sermon or a very short, easy to understand one. Today was awesome. They showed a video of animals who were raised together, abused, rescued and then separated. They wouldn't live apart happily. So they put them together. A lion, a bear, and a tiger. Pop loved that. There was a little activity where we tossed around a ball of yarn, which went remarkably well in a room full of dogs. The songs were even kid friendly. We sang The Unicorn. :) So that was fun! And no one even told me I couldn't sit where I wanted to. Whee!

I like taking Pop to church. It's a good place for him to get to socialize with other kids, and the supervision is really good. He's doing so well. I cannot believe what Son-Rise is doing for him. He's amazing. Last week, at BC Children's, the doc said, "I cannot believe this. This is amazing. What are you doing?!" So I told her. She shook her head and said, "That shouldn't work this well. This child does not seem at all autistic to me!" YAY! However, on Wednesday at Sportball, I talked to his coach for the first time. Coach (as all the kids know him) said, "Pop had a great night. Really worked hard." I said, "Not bad for a kid with autism, hey?" He said, "OH! Ooooh. That explains everything. Now I understand." LOL. Not as recovered as I'd hoped, eh? Guess it's good that I'm going back to the Option Institute (Autism Treatment Center of America) in a couple of weeks.

I've been thinking a lot about why I take him to church other than socialization. I suppose many would call it indoctrination, and I guess that might be fair on some level. But mostly, it's that I want him to know God like I do. God is a source of joy and comfort to me. God helps me be a better person. I want to look at people and see them the way God does. It would be so easy to just write some people off as assholes and let them go. But I can't do that and call myself a good Christian. God tells us to love our neighbour. To love our enemies. That whatever we do to the least of God's people, we do to God. So I cannot say, "to hell with you" without saying to hell with God. And I want Pop to have that too. And I don't see that being reinforced much of anywhere else.

Except at the Option Institute. I love that place. The whole goal of that place is to help people love. Love themselves. Love others. It's amazing. I once asked Bears (Barry Kaufman) if there was anyone he didn't like. He thought about it a while and said, "No. I can't think of any reason not to like someone." He continued, and I'm paraphrasing: I might not like everything someone does, but what people do is not who they are. Good people do horrible things sometimes because they're so deeply unhappy. He said that he'd once taught a class full of Jewish people and told them they didn't have to hate Hitler. Said he didn't make many friends that day, but that the odd one understood, and that was okay.

I want that. I want to be able to look at people that society calls evil and see them the way God would. I want to love them, while being smart enough to enforce safety boundaries. I want to be able to decide I don't want someone in my life without needing to hate them first. And I want to be able to be happy even when those who are close to me aren't happy, or aren't there any more. So... more Option Institute learning, and lots of prayer.

edited to add: The Option Institute is not religious in any way. They're not Christian or Jewish or Muslim or Buddhist or or or. It's all about love. :)

28 September 2013

This week in Autism

What a week. OMG. At home, it was a hell of week. We spent all of Monday taking the ferry to the lower mainland so we could go to BC Children's hospital to see a specialist who apparently doesn't know what Celiac Disease is. Yeah. So that was fun. Nutshell: Something's wrong. Fucked if we know what it is.

Tuesday was an appointment with Snap's team. That's always fun because I can't take the kids, they can't do it here, and I can't get a babysitter. So Tony takes the afternoon off work. God bless the union for making that possible.

My new assistant is pregnant and missed two of her three days this week. The other assistant is sick. From the ferry ride. She has a terrible immune system. So while I usually have 29 hours in 4 days, this week we had 3.

And then today this story broke. A family with two autistic kids, twins, who are 16, had one of them surgically altered so that he can't scream so loudly. And the Internet went crazy. People who had never experienced the 100 dB screams 1000 times a day for 3 years jumped in to screech about what awful people they are. Many assumed they'd never tried to find out why he screamed. Many assumed they'd never tried any alternatives. Many didn't think that the potential hearing loss they were experiencing was relevant. Many didn't think that the comfort and well-being of the other boy was important. They just howled that these are awful parents no probably declaw their cats too.

Well fuck all y'all. 

If you haven't lived it, you don't know. Do you know that loud sudden noises are use to torture people? To totally fuck up their nervous system. It works too. If you consider judging these people, I want you to set up an alarm that shrieks at 100 dB once every minute for 17 hours a day. Then find a child who screams and cries every time the alarm goes off. Try to make food, play, eat, read Facebook, or even take a shit while this is happening. I dare you.

I have lived this. I continue to, but no longer that many times a day. Oh, and I don't know what pitch that kid shrieked at, but mine does it at the highest A on the piano. And for a year or so, he did it every six seconds that he was awake. Less now, but often enough. Maybe a couple hundred on a loud day and 15 on a quiet day. Now add to that that he can't be left alone.

The surgery that boy had reduced his need to scream. It is reversible. And he can still talk at normal levels. He talks more now, and he eats better. So how exactly do these parents suck? 

Right. They don't. But the judges of all things parent say they do. Why? It's simple, IMO. They see a loud kid and imagine what they would want to do in that situation. They'd want to shut that kid up at any cost, and they feel bad about that, so they imagine the worst in others so that they can feel morally superior.

Fuck 'em. 

And has anyone asked the boy how he feels about it? I'm thinking that needing to shriek about 90% less and being able to talk and eat are probably a good thing for him. Let's ask him. And if he can't answer, then it is his parents' and doctor's decision. And fuck you if you think you can judge.

And now, I have to go, because Crackle is having a 104 dB meltdown (according to my sound meter app) and Snap is ready to jump out a window to escape it. Tony and Pop are at Costco getting groceries. Someone offer me this surgery. See if I don't consider it.

edit: I approved two comments for this. One from Karen and one from KirbyCairo. Neither of them appeared. Not sure what's up. I'll try to restore them somehow. Karen asked for a link to this story, which I can't believe I didn't put in.
Here's Salon where they talk about the ethics of it.
Here's where I first saw it

21 September 2013

Family trees

Family trees. Give 'em a shake, and a lot of interesting nuts fall out. Every single tree. Every single time. As you may remember, I'm offering to do family trees for people to raise a bit of money. I've done a few for readers, and I'm really enjoying it. Y'all are being way more generous than you need to be, and wow. Thank you.

The things I find are fascinating.

I dug into the life and family of a freed black woman in the US south in the 1800s. I didn't find much except a heartbreaking lack of records, a possible mother's name, and a phone number of someone who might know more.

I found that direct ancestors of one of my readers lived in the same place as my Dad's family. Within a mile of each other. For hundreds of years. They almost certainly knew each other.

One of my readers is related to my husband. VERY distantly. But still. They're both on the same tree. And God BLESS the French Canadians and their meticulous record keeping of women's maiden names. Actually, make that two of my readers. But one of them figured that out for herself.

One part of a reader's family was easily searchable on Google, because they were a part of prairie history. She didn't know that at all.

Another's grandmother was a lot LOT more famous than she thought. Her family was full of interesting twists and turns.

My husband is a direct descendant of Adrienne DuVivier and Augustin H├ębert. Twice. He is also descended from Marie Priault, une fille du roi. He had no idea. His family is much more excited to learn they're related to the Geoffrion family. *sigh* Hockey.

And pretty much the weirdest bit of it all? In at least one family of every person I've worked for, there are people from a tiny town in Manitoba.

So, I'm re-upping my offer. I'll dig into your tree for $15/hr. If I come up blank, it's free. Email me. luna@ headingwestTAKETHISPARTOUT.ca


10 September 2013

Homeschooling and special needs

As many of you know, my 7 year old, Crackle, doesn't go to school. He's homeschooled. It's best for us; it's best for him. Anyway, we have him enrolled in a Distributed Learning program that is accountable to the government. It's called Redacted Christian. I went with them not because they're Christian, but because they offered me the biggest cut of the special needs grant that they get to provide him education. But Luna, aren't YOU providing the education? Well, yes. But I need help, and the government gives the school money to hire someone to help me, because of his considerable special needs. However, as soon as I signed up with them, the money they offered dropped by 2 grand. :(

I'm really really not impressed with this company. I know I'm naive, but I expected some sort of morality from a Christian organization, and I'm not seeing it. I like lists, so here's a list of my issues with them.

1) Their hiring policy for SEAs (special education assistants) sucks. Again, they lied about allowing me to hire whomever I want. Nope. All SEAs have to sign a contract stating that they are evangelical Christians. Ew.
1a) All SEAs are contractors. That's Redacted's way of not paying them any benefits, which I find remarkably immoral. It's legal, sure. But it's not moral.
1b) THEY decide what the SEAs are paid. The max that any SEA may be paid is $17/hr. Why? It just comes out of my budget anyway. If I want to pay $34/hr and have half the hours, why can't I? Since they're not paying benefits anyway, it seems only fair that they pay a decent wage. But no. Can't be decent people. Must be capitalist shitbags.

2) The cut. For every child that enrolls in the DL school, the government pays the school a small amount of money. The school takes a cut and pays a teacher to do a report card based on the students reporting, and to do the paperwork involved in keeping the child enrolled. If the child has special needs, like Crackle does, then the school also does an IEP (Individualized Education Plan) that the parents and SEAs use as a plan for educating that child. In that case, the school gets a large grant ($16,500, last I looked) and uses that to hire the SEAs, OT, SLP, and any other program the child might need (swimming, for example, is covered for children with muscular issues). However, in almost all cases, the school siphons off about $6500 that they use for I don't know what, because my kid never sees it. Now, I know *some* of it has to go to the teacher, because that IEP takes time. But I certainly don't see that it needs to be that much. And, my husband was a teacher, and I have the vast majority of a B.Ed (I didn't do the internship), and we know how to write an IEP. But we're not allowed. Save them time and money? Nope. No can do. It should be noted that all the schools are the same on this. They collude to all siphon the same amount of money out of our grants. It's perfectly legal. The grant belongs to the school to provide special education to us. It is not my grant. But it sucks. They're making gobs of cash that they could be providing to kids. Instead, they throw a giant convention for the EAs every year, forcing them to come down to Victoria from all over the province. Nice Christians, these.

3) They monitor email. BIG time. Every email I send to my son's teacher is also read by the administration. That's creepy shit. They don't trust me. They don't trust the teacher (who is actually quite a nice person, but she's not a teacher to my son, and it bugs me that she's called his teacher.)

So why don't I quit? Several reasons... ooooh, I smell another list coming on!

A) It's a pain in the ass to change. I already have an SEA set up with them. I already have my IEP done. That's a ton of work.
B) They're all the same. I just expected the Christians to be a little less evil. Wrong.
C) The ones that aren't the same are worse.

So why not send him to school?

HAHAHAHAHAHAHA! The school board special ed person told me not to. She told me that they can't accommodate his needs. Then she told me she'd deny ever saying that because it's illegal. But she wanted me to know he wouldn't be safe. (wheeee, another list!)

Wanc) He is LOUD. He'd be too disruptive to be in a regular class anyway, and they'd either have him alone (so why not be at home where he's safe?) or in a group of other loud disruptive kids. And he's sound senstive, so that'd go over terribly poorly
Nuba) He's terribly terribly sensitive to gluten. The kids for some reason must eat in their classrooms. That means there are crumbs on everything. One crumb makes him sick for over a week.
Yamni) He's clever. Any SEA they hire for him is going to have to be aware of him 100% of the time. And they overburden the SEAs. He would get away from them.
Doba) He's clever. And they wouldn't actually teach him much.
Zapta) The school focuses on academics. That's their job. Crackle needs to learn to be socially connected to what is going on around him first. Forcing him to give the SEA the red block when he can't even play with her isn't going to help him be a happy, healthy human being.
Shakpe) He's too anxious and overwhelmed as it is. Throwing him into a schooling situation would be a nightmare for him.
Shagowi) Right, so he's non-verbal. If anything ever did go wrong, he couldn't tell me. Imagine if you had to send your child into a situation where he or she was vulnerable to abuse, and you knew there was no way you'd ever find out.

So yeah. No school for him. None for Pop either, but only because of number Nuba and the fact that he's brilliant and would be bored out of his gourd. I'm putting him in Sportball and Scouts for socialization time. And in the homeschooling interest groups too. But I sure as HELL won't be putting him in Redacted Christian!

06 September 2013

That's some fine customer service, Shaw...

ARGH. Why why why is it so hard to get information from companies? Especially about billing? Is Shaw Cable, taking cues from Telus? I'd rather live under a rock with no internet at all than go to Telus, so I guess I'll put up with this shit, but check this shit out:

GoToAssist:
Your representative has arrived.

Melody #6443 (18:15:39):
Hi Luna, thanks for choosing Shaw, my name is Melody. How are you today?

Luna (18:16:03):
Pretty good, pretty good. Glad it's friday. :) I have a question about my bill.

Melody #6443 (18:16:12):
Sure, go ahead

Luna (18:16:56): [I know that she has access to my bill and account information as soon as we connect]
My bill says, "Effective September 1st 2013, the monthly rate for your services has been increased to $122.00". Can you tell me why? What went up? From what I can tell, it looks like my billing bundle discount was cut.

Melody #6443 (18:17:42): [Nice cut and paste...]
The rate increase you had inquired about may raise concerns from customers such as yourself.  As consumers ourselves we feel the same way.  Like your heat or electricity bill, Shaw services are exposed to economic pressures and subject to change.  Shaw is always focused on providing the best level of service to our customers at the best value.

Luna (18:18:43):
Yes, but what went up? The services appear to cost the same as always. Was the cut out of the bundling?

Melody #6443 (18:19:32):
Yes, the bundled service went up for Personal TV and Broad band 50

Luna (18:20:05):
So instead of getting an $18 discount for bundling, I get a $6 discount?

Melody #6443 (18:21:41):
All our other customers pay $119.95 for Broadband 50 and Personal TV. You are getting a $12.95 discount

Luna (18:23:52):
Huh. That's strange, because my account history says: 24-Aug-13 050-888 Billing-Bundle Discount -18.00. But my current bill went up by 12 dollars.
Luna (18:24:34):
Which tells me that was reduced to $6.

Melody #6443 (18:25:53):
The services for internet and TV went up as well. All our customers are paying $119.85 for these services. Sorry for the inconvenience but these rate adjustments are out of my control. We am keenly aware and appreciate that our customers are facing rising costs for all types of services and are sensitive to price increases.  We would like to assure you that at Shaw we closely manage our increasing business costs in order to keep our services affordable for customers while continually striving to add value to our products and maintaining high service levels.

Luna (18:31:20):
*sigh* I am not upset. I am just trying to figure it out. I'm not asking you to do anything about it. I simply wanted information. I don't really care what anyone else is paying. I want to know exactly *where* my rate increased.  The services *appear* to be the same price as they were before. So, it must be in the "other" charges, no? My new bill says that Personal TV + Broadband 50 is $107.  I can't actually see my old bills, just the account breakdown. So I'm trying to figure out WHAT went up. I am not trying to get you to change anything, or give me a discount, or anything like that. I just want to know what changed.

Melody #6443 (18:33:15):
Personal TV and Broad band went up

Luna (18:36:22):
No, they didn't. Because the new bill says Personal TV + Broadband 50   107.00. The old acct info says 109.90 when I add them up. $75 for Broadband 50 and $34.90 for Personal TV for a total of 109.90.

Melody #6443 (18:38:08):
Yes, they did. Before you were paying $96.90 plus taxes for these two services
Melody #6443 (18:38:15):
Is there anything else I can do for you today?

Luna (18:39:32):
Excuse me, but I am looking at my account information for August 13, and it says
"24-Aug-13 050-1112 Billing-Broadband 50 75.00
24-Aug-13 050-1063 Billing-Personal TV 34.90
24-Aug-13 050-888 Billing-Bundle Discount -18.00"
Luna (18:43:43):
Are you still there?

Melody #6443 (18:44:32):
One moment please

She never came back. :(

01 September 2013

Church matters

Time for a Sunday Morning church post. It's long, but not preachy, so relax. :)

The United Church is my church home. In the same way that BC is my home. I wasn't born into it; I adopted it. There are parts I love, and parts I avoid like the plague. There are people I love to be around, and plenty I don't. The doors I used to walk through on Sunday mornings have closed. Permanently, and so now I'm looking for a new place to put my butt. And so far, none of the seats are comfortable.

It's not that the people aren't lovely. They are.
It's not that there isn't a warm welcome. There is.
It's not little things like projectors instead of hymn books.
It's not the theology.
It's not even the liturgy (which is NOT my favourite thing).

So what is it?

Old. Conservative. Tedious. Stodgy. Institutional. Completely out of touch.

Well, what I like about the UCC is the liberal theology. The questioning of what God is. And the okayness of saying, "Oh, I totally disagree!" Today's service could have only been more panentheistic if they'd actually used the word. The labour rules that the church enforces are equitable between sexes, between genders, and between genders is okay with them. Women are valued as much as men. And no one gives a crap whose fucking who. That's kinda awesome.

The church is liberal. The central church. The moderator. The congregations, at least the ones I've been to, aren't.

Take today. I went to a lovely little church tucked away in a wealthy area of town (which in Victoria means the houses in the area average about $800,000). I walked in about 2 minutes late, and it had already started. There was a sea of white hair and little else. I scanned the congregation and found 4 other adults under 60 (there may have been more, but that's what I saw). And there were 5 children. The children and their parents were the only people who weren't white. Oh, and one Asian guy. Now Victoria is rather white to begin with, so this wasn't really a surprise. And not a bad or good thing, though I do enjoy diversity. Just an observation. The average age was at least 72 and probably closer to 75. We took a seat at the back. The songs were projected onto the screen, but there were also hymnbooks for those of us who like to look at the music as well (BLESS THEM! There's nothing worse at church than not being able to sing along because I don't know the tune and have no music to read).

Then it was time for the children's time. I went up to the front with Pop and we listened to the fifteen minute lecture that the old woman had prepared and read - She READ the children's "story". It included words like narthex and right relationship with God and doctrine. I literally expected her to use the word panentheism at any time, because that's what she was explaining to them. It was basically a sermon, but written for ... I don't know, adults with a learning disability? It certainly wasn't for children. And I was bored to tears.

Oh, and the "responsive prayers"? Good God, people. Either do it with some joy, or just drop them. There is very little on earth that brings on the lolsob than hearing a congregation of people reading a prayer of joy like they're 8 year olds repeating after the most boring teacher on earth. Oh God we sing your glory! We praise you Oh Lord! should not sound like something Charlie Brown's parents say. And I've never yet found a church that doesn't fail that test. Every one of them. It's painful.

So we went off to Sunday school where I usually leave Pop. But he was clinging and I had a weird feeling about it. Ugh. Another lecture. No toys. No games. Nothing fun at all. It was literally school. One of the women figured out that Pop and another boy were bored and so she took us downstairs to the nursery. Where there were also no toys. They were expected to colour quietly while talking about God. No. I am not kidding.

There are a million reasons why the church is dying. The old conservative people's idea of reaching out to young people is playing a tune written after 1970. One. For diversity, I guess. The clergy must be getting frustrated. The young ministers come out of the seminary with all these ideas and then run into councils that are filled with old white heads that cry, "But we've never done it that way!" They make tiny little changes that to them feel groundbreaking, but to those of us dying for change feel like rearranging the furniture (and sometimes, rearranging the furniture is literally the change they're arguing about making. I am so not kidding. I witnessed a large church blowup about whether a pew could be moved.) There are still choirs in robes. There are still anthems. There's still membership. You have to officially join a church to be a member of the elders which is another stupid thing (elders?! Everyone there is elderly. I was an elder at one church, and I was the youngest member of it!). This means, you can go to a church for 40 years, but if you haven't joined officially, you can't vote on spiritual issues. Bwuh? My generation says no to that. Just no.

Institutional change is needed in our churches. And I have no idea how to make that happen in a bottom-up run church. Why why why must every service be at 10am on Sunday morning? Why not Saturday evening? Why not Wednesday evening? Why must every service be exactly the bloody same? Sure, different readings, different sermon. Same shit, different day. And I mean that as gently as I can. I love a good sermon. And I guess the answer is, "Because that's what the people who still run it want". They don't like to do new things. I went to a service where the minister asked everyone to turn around to each of the cardinal directions. He honoured the directions as symbolic. Well! You'd think he'd asked them to get up and dance a jig and then spit on the cross the way they reacted.

It's a problem. Young people who might be craving a little bit of the spirit have no where to go that respects them. Show up in a UCC while being under 40, and you can pretty much expect to be asked to join a committee. Blergh. Bring a kid, and they'll want you running the Sunday School. I honestly can't think of any church job I'd rather do less. Maybe being the person who has to keep the UCW happy (United Church Women, for the uninitiated). We're young. We have jobs. Or kids who are full time jobs in my case. We don't have the luxury of being stay at home moms to kids who go to school for 6 hours a day. So it makes sense. We don't run it. We don't get things our way. And so we don't go. We don't stick it out like the old folks did. And they don't get that. I actually heard one woman say of my closing church that her church would absorb all of us. She said, "There's no other United Church around. They'll have no choice but to come here". Oh. Oh honey. No. We can choose to drive across town. We can choose to not go. We can choose to join the Pentecostals (shudder). She didn't understand that. And I love that lady. But she doesn't get it. One flu epidemic, and her church is done. There's no one there to keep it going in any fashion, never mind the way she likes it. Because there's no youth. And the way it's set up requires a lot of time, a lot of effort, and a lot of money.

You know what'd I'd really like? A charismatic church with a liberal theology. I want to sing and dance and celebrate on Sunday morning. I want to revel in God's love. I want to sing the glory. I want to wave my arms in the air. And I don't want to be told I'm a horrible sinner not worth of God's love. I don't want to hear about some literal hell where I'm going to burn forever because I think women are sexy. I don't want my friends to be unwelcome because they think God is "just" the energy of the universe. Or because they have a penis but wear a dress. I want a place where everyone is welcome, as is, and is celebrated as is. And where we can all get together and worship. And I do not see that in the United Church. Oh sure, there are some where my dancing would be smiled at rather than scowled at. And once, someone joined me (I named Pop after her. Only sort of kidding.)  But it's not the norm. And not even possible in some places.

So what's the answer? I dunno. Change for the good of the church, or die and rise from the grave. I know which one started the church... So I guess we'll see. In the meantime, Pop and I will keep looking for comfortable seats to put our butts in every Sunday. Even if they don't fit properly, we can try to find something that's close enough, and then work to make it just right.