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),

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.


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 Hébert. 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:

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.

What if?

You know how some people can obsess over things that happened or might happen? It's the "might have beens" and "what ifs" that bother me the most. Missed opportunities, missed chances to say the super awesome snarky comeback. Wondering what would have happened if... What if that person hadn't been there? Close calls. Things like that.

For me, sometimes those memories are worse than the ones where shit really did happen.

Today, my chiropractor and I were chatting after he fixed my back up for me (God, I love that man...) and we were talking about startle responses. I was saying that mine is really stupid bad, partly because I'm always on guard for Crackle. I'm always, always alert. Always ready to jump. And I said something about the time my dear niece decided to jump out and yell "BOO". I nearly hit her. Like, the kind of nearly that is OMG, I can't believe I managed to stop myself! What if I hit her? What would have happened? It bothers me. So he said to me, "That's quite the response. Have you been attacked or something to give you that?" I said, without thinking, because I wouldn't be me if I thought for a second before I spoke, "Yeah. By Alex Ternowetsky and a few of his buddies". He said, "Boys pulling pranks?" I said, "Google his name." That's all I could say, because in my brain I was screaming SHUT UP BEFORE YOU START CRYING, YOU FUCKING MORON.

Now, what happened with me and him and his buddies didn't amount to much. I was outside at work. They surrounded me, pushed me around and generally scared the shit out of me with the stuff they said. One of them seemed scared and told Ternowetsky to knock it off (I don't remember that kid's face, but I vividly remember him saying, "Come on Alex. Don't do this"), and when Alex turned to give him the STFU look, I bolted into the gas station I was working at and locked up and called the police, who declined to come because the boys had already left. But that fucking haunts me. Far worse than some other things that have happened. What if? What if the boy who had a conscience hadn't been there? What if they'd decided to wait for me after my shift? It was dark. Late. I was alone. My car was in a dark corner. What if? These kids proved themselves to be psycho little bastards not long after.

And what if my hockey hero hadn't been at that party?

What if the doctor at the hospital I stayed in shortly after Snap was born hadn't switched out with the other doctor? I'd have been an easy target. I wasn't from around there. I was vulnerable. But the other doctor insisted on taking my case. Why? And what if she hadn't?

I have so many close calls like that. Most of them don't bother me (like the doctor). But some? I can't seem to stop thinking about them sometimes. Today was one of those days. As soon as I said that fuckwipe's name (and by the way, he's out of prison, because apparently planning and committing a murder is a minor crime if the victim is a First Nations female sex worker) I was shaking and flashing back. All fucking day I was off. For something that barely happened. I never really understood "being triggered" before today. Now I do.

19 August 2013

Who is really the monster here?

How I felt when I read it.
Today hasn't been a particularly good day. I awoke to the construction noise, followed by Crackle's noise. He's particularly loud today. (92 dB peak according to my iPad app). And maybe that's why I'm so upset by the letter to the parent of the autistic boy that is floating around*. I first saw it on Saturday. Or that is, I saw reference to it. I didn't read it until this morning. And then I cried. Oh, how I cried. I cried the ugly cry. The sobs. Maybe this is in part hormonal. Maybe not. Because that shit was ugly. The letter writer actually called him a monster and suggested euthanizing the boy. Because he's loud and autistic. Like my son. My beautiful, kind, sweet son.

He's on the trampoline right now. He's shrieking his heart out. He's naked. He's filthy with peanut butter, mashed potatoes, and spilled coconut milk. He hasn't spoken a clear word in 4 years. He has seizures that make him vomit. He doesn't play like "normal" kids. He's exactly like the boy in the letter. And someone wants that boy dead.

I know I can focus on how awesome my neighbours are. They're kind enough to ensure that the construction workers let me know in advance which days will be loud. They offer sympathy on days when he's loud. They tell me how awesome I am. (Please don't tell Autism Moms "I don't know how you do it" or "I could never do what you do". Or worse, "I'm so sorry!") And on days like today, I read that as, "I couldn't do it. Your boy is awful." 

But he's not. He's sweet. He's gentle. Even if his shrieks aren't. He snuggles up with me in the night because he's afraid of the dark. He frets and comes to get me if Pop gets hurt or upset. He likes it when the dog curls up with him. He spends the vast majority of his day playing with a stack of socks. He has a favourite. It's the green one that is made of organic bamboo. He likes to eat on the trampoline, and sneak treats to the dog. He likes hugs and kisses and going to the beach. He likes to sit in the forest and listen to the birds. He likes to play the piano (terribly). He loves it when people sing to him. Any song will do.

Someone was filled with enough hate for a boy like mine that she felt it necessary to send a letter, anonymously of course, the fucking coward, to his grandmother, calling the boy mean names, and threatening his life (albeit indirectly). You know what? My kid could never produce such hate. He could never treat someone the way she did. 

I'd way rather be his mother than hers. He's not a monster. But I have to wonder about her.

*Not linking. It's awful. I'm not putting that negativity into your world if you haven't already.

08 August 2013

Religion, politics and feminism in the news

Religion, politics and feminism are intersecting in the news again, so what's a Christian, socialist, feminist to do but blog about it? :)

First off, right-wing Catholics are pissed at Pope Francis. To that, I quote Nelson Muntz:

The gist is, "Waaaa! He wants to be nice to people!" I honestly do not understand how they call themselves Christian but are mad that he wants to focus on fixing poverty.

source: all over facebook, but the original is here
Oh, right. Hypocrisy. Like how whenever anyone complained about Benny the Rat... errr, I mean Pope Benedict, it was, "Well, he's the Pope, so shut up" but now they're all up in his infallibility. Pfft. That reminds me, they really really don't understand about the infallibility of the Pope. According to the doctrine, he's only infallible if speaking in a very specific way. Not all the time. And yet, that's how the idiots think.

I like Francis. He's not perfect (duh), and he still isn't onboard with women in the priesthood, but the way that he upbraided the press for asking about gays in the priesthood, saying that that's a matter of sin, not a matter of law and why weren't they asking about the abuse issues? *applause* And "Who am I to judge?" BEAUTIFUL.

And then there's Baird (ugh), REAL Women (ugh) and The GAY!OMG!BBQ! So really this boils down to self-proclaimed real women having their panties in a twist because someone they don't approve of is being treated as human. Listen up, Ladies, you don't have the right to be a member of the privileged class. Real Christians want human rights for all, because that's pretty much the definition of loving thy neighbour.. So Landolt, the horrible VP of REAL says (via CTV News),
"Just who does John Baird think he is?" asks Landolt while accusing Baird of using taxpayers' money to "promote his own personal agenda and endeavouring to set standards of the laws of foreign countries."
Landolt says while Baird argues that "homosexual rights are a `Canadian value,' this applies only to himself and his fellow activists and the left-wing elitists."
She adds that these are "not conservative values and that of grass roots Canadians."
Oh bless your heart. Just who does he think he is? Um, he thinks he's the Minister of Foreign Affairs. He's exactly there to try to set the standards of the laws of foreign country. Does anyone think for a second Landolt would be screaming if Baird were trying to stop Sharia law in some country or other? No. And you know what, Landolt dear? Homosexual rights? They're human rights. These are people. Hate is not a Canadian value. And you know what? I dislike you just a little more because I hate that you've made me defend Baird

06 August 2013

Adventures in Holidays

I just spent the weekend in Anaheim, California. It was my daughter's grad gift - a trip to VidCon. Disney was just something to do on Sunday. And she didn't enjoy it. Hehe. Good girl. So while she was VidConning (it's a word because I say it is), I was lying by the pool, floating in the pool, hanging out with my most awesome friend Martin and drinking a LOT of wine. Like the "I need a liver cleanse" kind of a lot. Snap lost her camera (stolen?) while there, and she's pretty heartbroken about all the missing pictures. John Green retweeted my tweet for help finding it (to more than 1.6 MILLION people), and that was amazing. Random strangers are checking the Hilton lost and found, searching the lobby, leaving their numbers with front desk to try to get it back for me. YouTubers are kind of cool people. Snap was in her glory. It's like she got there and found Her People. There were 11,000+ people there, and they were pretty amazing people. In the shuttle on the way to the con, every single person in there was going to VidCon. The woman next to me asked us all if we minded if she vlogged while we were there. As in, "Do y'all mind shutting up for 2 minutes while I video myself?" Everyone obliged happily. She accidentally caught one guy in her video and apologised profusely for recording him without permission. He laughed and said that he had waivers in his bag. HA! He was kidding, but you get the drift.

It is REALLY hard to find food in Anaheim that is gluten-free, dairy free, and meat free. Like REALLY REALLY hard. I walked 2 miles to the nearest grocery store - which sucked donkey balls - and caught a cab back. That was fun (not really). There was not a single piece of organic produce in the store. Their was no "health food" section. There were no packaged gluten free things. I bought regular produce and some peanuts and lived on that for 5 days (and gained 4 lbs). That and booze (why I gained the weight). Holy shit is wine cheap there. I bought a bottle of this for $4.50. For reference, check out the BC liquor board price.

The cabbie on the way back was funny. I asked him where he was from because he had an accent I wasn't familiar with. He said, "China". I blinked, because 1) he was black; b) his accent was decidedly not Chinese. But who the hell am I to call someone on that, so I said, "Oh. Okay." He said, "Am I the first black Chinese you've ever met?" I said, "Most definitely". So he said, "HA! I'm kidding. I'm from Africa". Smartass. So I said, "Oh, well yes, that does make more sense. Which part of Africa?" And he said, "If you can guess in 20 seconds, I'll give you half price on your fare." Hehe. So I said, "Somalia!" Nope, 15 seconds (he counts fast) "Ethiopia!" *mouth hangs open* "No one has EVER guessed. Ever. Uh... I can't actually give you 50% off." Hahahaha. So I told him that he had to give me some sort of deal (I was kidding, but figured I'd tease him a bit back) and he said, "Okay. I'll turn the meter off here and you don't have to tip me." LOL. So my $10 cab ride cost me $7.50. As I was getting out, he said, "So how did you guess, anyway?" I laughed and told him I am a linguist and collect accents in my head. I'd already narrowed it down to eastern Africa by the time I heard the first sentence he said. And I knew it wasn't Nairobi either, so... Hehehe.

Anaheim is a weird place. The economy is clearly all tourist driven. I suppose that's why there are so few grocers around. And it's clean. Like really clean. I saw someone wiping down garbage cans. All the cleaning staff speaks English, unlike every other American hotel I have ever stayed at. Honestly, I learn few Spanish phrases that I know I will need before I go, because I expect it. That said, does someone know how to say "Please put fresh sheets on the bed", because apparently I've got it wrong. Am I asking for them to be fresh like produce? Am I saying I want them to be brand new? I dunno. I've also learned, "Thank you. It looks lovely in here" and "Can I help you with that?"

I like to fly. The environmentalist in me is screaming, but I really really like flying. I like being in the air, I like looking at the clouds, the terrain, the tiny communities. On Thursday morning, my flight took off at 6am, which meant getting up at 3:15am. Ugh. But from above the clouds, I got to see the sun coming up over the Salish Sea. It was magnificent. It's times like that when I really feel close to God. I mean, sure, some of it is probably the Heaven in the Clouds symbolism, but not all of it. The sense of serenity I get up there, I attribute to the reminder of just how small everything is, but also how magnificent. And how tiny and insignificant we seem, even from above only a tiny area of the tiny planet in the tiny solar system of the immense universe, but that God loves us anyway. Or something. I dunno. All I know is I am never more calm and serene as when I'm at 35,000 ft. I rambled all of this to someone in the airport (Yeah, I'm THAT asshole) and she grinned at me and said, "And WHY aren't you a flight attendant?" I laughed and said, "Sure, or pilot, because hello, sexist!" And she laughed and said, "I am a pilot. Not commercial, mind you. But calm and serene is what we need in flight attendants." Ha!

So I'm back home, back to the real world, and armed with all of Martin's best jokes. Like, "guess who I bumped into on the way to the optician?" "Everybody".

You're welcome.

30 July 2013

Follow Tuesday?

One of the blogs I follow does #followtuesday. They post the funniest search terms that have brought people to their blog. Now, my blog doesn't get the hits they do, so this won't be a regular feature here. Hell, blogging isn't a regular feature here right now because OMGWTFBBQAUTISM, but I thought I'd amuse you all with some of the terms that bring people to my blog.

1) Encrypted. Uh, okay. So most of the people who find my blog are so worried about their search terms they encrypt them. Good to know.
2) Drug receipt. Sure. You can get a receipt for drugs. Just ask your dealer. I'm sure he won't mind.
3) Fuck the poor. Good idea. They could use the pleasure.
4) Autism United Church of Canada. Okay, so this is the single weirdest combination I've seen. And yet, I see how it got to my blog.
5) Autism usless. Usless? Um, ouch.
6) Bubbleguppies have sex. I'm sure they do. How else would there be baby bubbleguppies. Also, wtf is wrong with you?
6) feminist "humiliate him"  This is not the site you're looking for. No Jedi handwave needed.

Yeah. Most of the rest are variations of the same. Except for the Bubbleguppies thing. That was on its own.

19 July 2013

Not asking for money. Promise.

I'm fundraising. And as generous as you all were the last two times, I'm not asking for donations this time (I mean, feel free, but I'm not asking... :)) What I'm doing is offering my service as an amateur genealogist. I love to research family trees and I have access to worldwide records via Ancestry.ca. I will research your family or anyone else's.

I'm quite good at this, and quite thorough. My friend Grace knew only her father's name and date of birth. No other family members. I found his sisters, his parents, his grandparents and his great-grandparents names for her. I found a birth record for him, census records showing all them together and where they lived, and I found his parents marriage record. In my own tree, I traced my grandmother's family back to 1534 in Yorkshire. And on my husband's side, I have an almost complete tree for his Grandfather (and it is SO cool!). Of course, his is all Quebecois and God BLESS those people for their records.

I'll do it by donation, and I'll give you your money back if I find nothing. Suggested donation - $15/hr. Same as I pay the boys' SEAs. You tell me how many hours you want me to work on it.  I cannot access anything for anyone who is living and records are best for people who were born before 1914. Canada, US & England have excellent records. Ireland is shit. Germany and France are hit and miss because the wars destroyed a lot.

Who's game? Email me. luna [shift2/at sign] headingwest dot The1st2lettersofCAnada

Here's why I'm doing this: My car broke down. My dog needs expensive vet procedures. I just had to pay TWENTY THOUSAND dollars to my strata for repairs to the building. I paid for a trip to California (before all that shit came down) for Snap for her graduation. Crackle's meds and supplements aren't particularly cheap and just went up again. And I still need to find the money to get back to the Option Institute for the third (and final!) course in Son-Rise in October (and I *could* postpone that if I hadn't have bought the airfare one way because I hit a killer seat sale).

18 July 2013

This week in Autism

Holy smokes. It's been more than a month since I last posted here. It's been a bit crazy. Crackle's not had a particularly easy month, Snap graduated from high school (omgomgomg), my Mom, my brother and his gf came out to visit, my inlaws came for a short visit... We also had to come up with $20,000 for repairs on the building. The dog is pissing blood again. Crackle is still vomiting every 6 weeks or so.

So yeah, no blogging time. Mostly I'm being posty-reposterson on Twitter if I do get online.

In the autism world, a few things have come up:

Higher Levels of Several Toxic Metals Found in Children With Autism
Lead, thallium, tin, and tungsten were found in higher levels in children with autism. This would be why chelation therapy (done properly) isn't the bullshit that quackwatch and other assholes like to call it. It's not a cure, no one ever said it was - well, no one with a clue, but it is some pretty good validation for those who have tried it and seen positive effects. If people with autism don't detoxify metal properly, it would also go a long way in explaining why it appeared to so many of us that vaccines were a problem. It's not that the vaccine caused the autism, it's that the already autistic person couldn't detox the metal. And that their bodies couldn't handle the toxic load. Because the immune system is implicated too.

Elevated Gluten Antibodies Found in Children with Autism
"Researchers have found elevated antibodies to gluten proteins of wheat in children with autism in comparison to those without autism. The results also indicated an association between the elevated antibodies and the presence of gastrointestinal symptoms in the affected children. They did not find any connection, however, between the elevated antibodies and celiac disease, an autoimmune disorder known to be triggered by gluten"
This one validates all of us parents who insist that gluten is a problem for our ASD kids, even if they don't have a celiac diagnosis. My kids probably have celiac, because my husband and I both do, but most doctors don't accept that and want us to do a gluten challenge on them to get a positive diagnosis. I told them that if they wanted to look after them for the 6 weeks they were on gluten, I'd consider it, but I wasn't being in the same house with them.

Excessive Cerebral Spinal Fluid and Enlarged Brain Size in Infancy Are Potential Biomarkers for Autism
This one is just plain interesting. Crackle does have excessive cerebral spinal fluid, but he has a chiari malformation, and we thought that was the reason.

Now, I don't want to start a shitstorm, but this also popped onto my radar. 68 Research Papers Showing that Vaccines Can Cause Autism. I don't exactly buy this. But like I said above, I do not think that vaccines are safe in kids who already have autism (With exceptions, of course!). Couldn't it be that the child seemed to be developing normally (i.e. subclinical autism) and that the vaccines caused the symptoms to be noticeable? I guess I am baffled by the mentality that I see in both points of view. I mean, the anti-vax people don't seem to recognise that since the advent of the polio vaccine, polio has been all but wiped out. They don't admit it when their science is bad, but insist that everyone else does (okay, that's both sides). They flat out don't believe that vaccination causes immunity, despite the fact that you can test titers and see when someone has been vaccinated. And the pro-vax people don't seem to recognise that millions of people are having problems after vaccinations. Worst of all, what I don't understand about the pro-vax people is the idea that "The science is in. There's no arguing. If you argue, you're a crackpot". I don't think so. There've been a few studies, with obvious flaws. Like the one in which a bunch of the research money was stolen, but somehow they did the whole study anyway and managed to conclude that vaccines were safe, and it was a CDC funded study... If the science was in, so to speak, no credible scientists would still be studying it. And they are. I also find it relatively baffling that the pro-vax side, which tends to be left-wing or centrist, are willing to take the government at its word on this when everything else is open for question.

I'm a moderate on both. I vaccinated Crackle, even after I saw the damage it did to Snap. It was a huge mistake. HUGE. I ignored my instincts, and went with the best mainstream science I could find. I dismissed the anti-vaxxers as idiots. I figured the benefit outweighed the risk. It didn't. He regressed that day. That. Day. Became sound sensitive that day. Stopped sleeping properly that day. Never recovered. Don't tell me that's coincidence. Don't tell me that's unrelated. Don't tell me it would have happened anyway. It might have, but it wouldn't have been because I ignored my instincts.

Here's what I tell people who ask me if they should vaccinate: If your kid has no risk factors for autism, no immune system problems, and is perfectly healthy, sure. Go for it. DO NOT give them Tylenol for the fever afterward though. That's about the worst thing you can do. (Empirical Data Confirm Autism Symptoms Related to Aluminum and Acetaminophen Exposure. Entropy, November 7, 2012)

Oh and Jenny McCarthy joined The View. FML. Like I needed this. She's lovely and perky and funny. And OMG PLEASE SHUT UP ABOUT VACCINES. What we don't need is this. We don't need her and her pseudoscience being the voice of autism. She needs to stop talking about cures too. Especially when her kid, with his team of doctors and specialists, is still quite visibly autistic. Gah! Put me on The View. I'm not as perky to look at - I don't stop traffic, but I don't chase it either... and I'm sure my foul mouth will have the effect they want. And I won't embarrass the autism community. Much.

12 June 2013

Adventures in Bureaucracy: Disability Edition

This got long... Sorry!

My darling Snap is on PWD and PSI. Other than actually birthing her, I think getting this approved was my greatest achievement. It was almost as painful.

A little background + acronym explanation

CLBC - Community Living British Columbia - an underfunded government agency that is supposed to provide support for adults with disabilities. They were originally for people with low IQs (below 70? 80?) but recently started including people with Autism and/or Fetal Alcohol Syndrome who have adaptive function  problems.

PSI - Personalized Supports Initiative is a program under CLBC that provides services to adults who have both significant limitations in adaptive functioning and either a diagnosis of Fetal Alcohol Spectrum Disorder (FASD) or Autism Spectrum Disorder (ASD). It is NOT available to people with intellectual disabilities (i.e. low IQ) Starts at 19 year of age.

By "significant limitations" they mean "three standard deviations below the mean on any recognized adaptive functioning test". Recognised adaptive function tests include the Vineland and the SIB-R. These are vastly different. One tests what they can do and one tests what they do. So if Snap CAN brush her teeth (an example only. Not relevant to her.) but does not do it unless she is reminded, nagged, goaded or bribed, she gets full points on the Vineland, but not on the SIB-R.

The test must be administered by a clinical psychologist.

PWD - Persons with Disabilities. i.e. Disability Welfare. - $906/mo - Starts at 18. To qualify for PWD, you must be able to jump through every hoop designed by evil bureaucrats you must be significantly disabled in various areas of living. You must fill out a long application, have your family doctor fill out a section, and have either your family doctor or another professional fill out another section. If you do not have a family doctor, the advice is to find one.

Okay. Sounds easy right? Ask the school district to do some testing. No, they say. We did that 4 years ago. But that's not new enough! Too bad, we got our funding, screw you. They literally did not return my calls. I finally got hold of someone in the last week of school in Grade 11. Of course, that made it too late for that year, and "we don't do testing in Gr. 12". So...?

Just find a psychologist to do the right adaptive function test. Easier said than done! The ones around here all do the Vineland, and that grossly over estimates what Snap can do. Look for one to do the SIB-R. Bingo. Found one. In Nanaimo. Okay, drive up to Nanaimo. Pay the good lady $1500 for the test (she dug through 2200 pages of documentation, provided a 100 page report and spent 4 hours with us). Okay. Good. Next?

Have the social worker fill in the application and send it to CLBC. Make sure it says that she has Autism, but not an intellectual disability... OOPS. The psychologist who did the adaptive function test can't actually say she doesn't have an intellectual disability because she didn't test for that. Have the Social worker call the school district psychologist who did educational testing in Grade 9 and ask her to send a note saying she doesn't have that. But what? That psychologist won't do it? Why not? Good question.

Social worker: It's your own report. I just need a little note saying she doesn't have an IQ below 80.
Psychologist: Why?
Social worker: To send to CLBC so she can get on PSI.
Psychologist: I've never done that before. I'm going to need this request in writing.
Social worker: Why? It's your own report! I'm just asking for a tiny clarification. All the numbers are there. I just need a simple statement.
Psychologist: I'm going to need that request in writing.
Social worker: I don't understand the problem here. I need this now, not in a few weeks. We have YOUR report here. I can fax it to you so you don't have to look it up. Just a simple fax saying, "Snap's IQ is above 80".
Psychologist: I told you. I need that request in writing.
Social worker: I know you told me that. I want to know why.
Psychologist:  Well, I need the request in writing and that's all there is to it. *hangs up*
Social worker: *gapes at me* SHE HUNG UP ON ME. Oh, we shall just see about this!

So... now what? Can't get on PSI without the psychologist who said she had the higher IQ to put it in writing, but she won't. The other psychologist left the school district and the psychologist above flat out said she would not sign off on that work ever, no matter what, because "I didn't do that. It's not my work. I'm not signing off on anything I didn't do!" and when the social worker said, "That's fine, it's all in your report, you can sign off on that!"

So we called the psychologist who did the adaptive function test. She said, "Oh, I wish I could help, but I didn't administer that test, and I can't sign off on the district psychologist's work." Oh. Uh oh. So then I mentioned that I didn't know what we'd do because the only other report's author was gone. She perked up, "OH! She's not available! Then yes, I can sign off on that. When the author isn't around to clarify, I am allowed to give my best guess about it, and in this case, all the numbers are so clear, it's not even guessing. She's obviously not a low-IQ case!" PHEW!

Okay, so she faxed that right over, no charge, and off went the application to CLBC. Approved! Woo! Next up, PWD.

For PWD, first you have to fill out a long application online. There is no way to do this with a ministry employee. There is no way to do this on the phone. There is no way to do this on paper. So we filled out the long application, and then waited. And waited. Finally, we got a call. During the call, I basically had to reiterate everything from the application. Then I was given an appointment date and address. Except the address didn't have the suite number on it, and the complex was huge. So I called to find out the address. I was told RUDELY that I had no right to call on behalf of my daughter, and they weren't telling me anything. I told them she is still a minor (she was then) and they grilled me about why she was applying, what her diagnosis was, and why she couldn't talk herself. For an ADDRESS! Finally, they gave me the address and confirmed the appointment time.

So, we showed up at the appointment with all the things on the list (ID, etc.) First thing, the sign says to take a number and wait. So we did. Then a nice lady sitting beside us overheard us say we had an appointment and told us we didn't need a number if we had an appointment. Good thing she was there! So we went to the counter and a large security guard asked us what we needed. We told him we had an appointment and he let us up to the window. We told the receptionist and she told us to sit back down, they'd call us when they were ready. Oooookaaaaay. So we sat. We sat with the mentally ill, the addicted, the criminal element who collect welfare while they sell drugs, the homeless. The down and out, basically. Now, if you know me, you know I have a LOT of empathy for these people. I'm also not above sitting with them, sharing my lunch, whatever. But it's a recipe for disaster. Get someone with autism in there with the noise, the smell (oh your multiple fucking gods, the smell), the harsh lights, the over-crowded waiting room, and just see if there isn't a problem. Snap did fantastically. And she needed several hours alone afterward to unwind from it all. Might be an idea to have a few streams, some quiet rooms, etc.

Finally, they called us. We went and sat with a man who I have discovered may be the single best intake worker ever. I've shared stories. He was kind, funny, gentle, and he took his time. Now, he forgot to get a consent (which caused a bit of trouble later), but other than that, he got the ball rolling. He asked us all the idiotic questions, like "Do you own any foreign property?" "Do you own any watercraft?" Um? No... After "Do you have any assets", the answers are all obviously NO. Duh. But he asked, and we laughingly answered. Finally, he sent us away with our forms. These forms are incredible. They basically re-ask everything that a) we'd already answered; b) is already answered by all the medical and psychological reports we had to bring with us to the appointment. The forms had to be filled out at length by the family doctor and another professional (or the doctor again). If you have no GP, as many many many do not, you may not apply. Period. The advice is "find one". Check the College of Physicians website, there are NO doctors in Victoria taking new patients. And honestly, good luck getting a new doctor to fill all that out for you, because they'll think you're scamming them, and not want to put their ass on the line for a patient they don't know well enough. We do have a family doctor, sort of... (longer story) and she was horrible about filling it out. I answered all the questions on a separate piece of paper, and put page number references to the myriad documents included with it. She checked to make sure I had the stuff right, and more or less copied my answers. It took her 6 weeks, and cost Snap her first check, which fortunately she didn't need because she was still living here. Then we sent the form to the same psychologist who bailed us out last time, and she did the other part. There was no way for them to do it at the same time. One form.

After the form was done and sent in, we waited. Finally, we got a call that she was approved. But they needed her SSN, because the intake guy hadn't included it. Also, there was no consent on file, so they couldn't talk to me about all this. Eesh. So we had to go down to the office. This time, the downtown office.

The downtown office is flat-out terrifying, mostly because the security guard looked like he was scared shitless. But we managed to get let upstairs to the community living worker after surviving the guard's suspicious looks. So, as I was looking at the consent, I noticed that our address was wrong. Off by one. Something like 737 instead of 747. Well shit. Now they wanted us to prove it, prove who we were, etc. Managed that, and she changed it. She gave me a phone number for the bus pass program, issued the cheque and then said the next one would be direct deposited. Hallelujah!

Except not. The date for the deposit came and went. So I called and left messages for 5 days. Finally someone called. I told her what happened and she looked it up and said, "She hasn't been approved yet." I said "What?! She got her first cheque! What do you mean she's not approved?!" She did some looking and found that oh yes, she HAD been approved, but no one told the computer to start issuing cheques yet. So she fixed it, confirmed my address with me and told me she would put the cheque in the mail.

While waiting, I called the number the worker gave me for the bus pass. I spent 45 minutes on hold to find out she had given me the wrong number. The woman on the line sent the bus pass application anyway, but very very condescendingly told me that next time I would have to phone the right number.

And then the cheque arrived. At my neighbour's house. They sent it to the wrong address. The bus pass application also apparently went there, but he didn't think to bring it. Only when he saw that it was a cheque. In fact, the guy didn't even know us, and wouldn't have known to bring it at all, but Pop's magazine had the same problem, so one day when I saw him outside, I asked him if he'd drop off any magazines that went there by mistake.

So... More phone calls today to change it. Another hour on hold. Apparently they had a home address, the one the person confirmed with me, and a mailing address, which was wrong. Should be fixed now. So I asked if she could send a bus pass application again. Yes, she said, but did I know I could apply online now? No, I did not know that!

So, off to the web! Oh shit. It only works in IE 8 or better. I use Chrome. Find IE. Try again. Oh shit. It needs the newest Adobe Reader. Install that and... Nada. It doesn't fucking work. So, I saved the link, opened it manually and it worked. But, as I found out when I had to do something with the boys, it must be submitted within a certain amount of time. So I had to go back, re-download it and try again. Success!

And now we wait. For the next cheque. And for the bus pass.

Now tell me this, what if Snap didn't have me? What if the psychologist hadn't signed off on the work of her colleague? What if I hadn't had the $1500 to pay for the assessment? What if I hadn't known about the failings of the Vineland? What if she had no one with the patience to wait on hold for hours? What if she had needed that June cheque for rent? For food?

She would have fallen through the cracks, that's what. And I wonder how many people there are like her who have.

30 May 2013

God doesn't think She's a doctor, so how come doctors think they're God?

Dr. Ego wrote a letter to my doctor and copied me on it. Gist? There's nothing wrong with me that a little counselling couldn't fix. Literally, he said, "Despite her protestations, I suspect that Ms. FCS is suffering from stress, and could benefit from counselling"

Dr. Ego? I already get counselling. He didn't ask. I fully well and truly believe that everyone would benefit from counselling. Everyone. So yeah, I'm already doing that, but whatever. I just hope my doctor doesn't take his words as gold. If she does, I'll inform her that Dr. Ego said that she was stupid for sending me to him in the first place. "These gps. So stupid. They have no idea that these numbers [out of range labs] are normal. So they waste my time sending perfectly healthy people to me."


Forgive me Comrades, for I have sinned. It has been two weeks since my last blogpost. And that was a screaming rant. I'll get down on my knees... wait? Is this still the confessional?!

Okay. I'm a bit off today, OBVS. :) Crackle and Pop have been sick. Right. So then, back to puking kids. Crackle and Pop are so different, in every way. Even how they puke. Pop politely asks for a pail and then delicately pukes. Crackle does something worthy of a horror movie. Isn't motherhood glamorous? :)
Tony's had it too. I'm holding it all together, and as soon as they're better, I have plans to fall the fuck apart. The last couple of weeks have been blood and vomit-filled. Doctor visits... DIGRESSION ALERT!

I saw a new doctor yesterday. An endocrinologist. A man with the ego the size of Minneapolis (I don't know why I picked Minneapolis, it was the first city that popped into my head. Aren't there cities in Canada I could have chosen? Probably.) Right. So Dr Ego is an old white man, which I think leads him to believe he can be a condescending prick if he so chooses. Some snippets of the appointment:

Dr Ego: What disease have they put into you?
Me: Ha! (thinking, okay, this guy could be all right!) Good question. I think they want you to answer that though.
Dr Ego: Whatever it is, you don't have it. You're fine.
Me: Well, that's good to hear, but since I'm here anyway...
Dr. Ego: Yeah, I might as well go through the motions. Ya never know. There are some outliers. But I can tell you now, you're fine. I can tell by looking.
Me... Uh...
My brain: ABANDON SHIP! ABANDON SHIP! No, wait, you'll get a good post out of this. Stay and take notes!

About 4 minutes later:
Dr. Ego: So, you work out a lot, do you?
Me: Yes. I go for long hikes up steep hills, quite regularly. If it's not pouring, about 4 times a week.
Dr. Ego: And you can't lose weight?*
Me: Nope. Nothing seems to help.
Dr. Ego: You eat too much.
Me: No, I don't.
Dr. Ego: Yes, you do.
Me: No. I don't. Because of the Celiac, I've been with a dietician off and on. I eat 1200-1500 calories per day, and ...
Dr Ego Interrupticus: I doubt it.
Me: Excuse me?
Dr Ego: Well, what kind of calories?
Me: Oh, so that matters now? Well, I'm about 95% vegan.
Dr Ego the Super Douchecanoe: *mutterssomethingthatsoundslikebullshit*

*I didn't actually tell him I wanted to lose weight either. He assumed it since I weigh about 180 lbs.

Dr. Ego: So your daughter has Hashimoto's?
Me: Yes.
Dr. Ego: What is Hashimoto's? (He's an endocrinologist; this is his specialty. This is clearly designed to find out what I think it is, not ignorance)
Me: It's an autoimmune disease that...
Dr. Ego Interrupticus: NO. It is not a disease. (also)
Me: Okay... Disorder?
Dr. Ego: NO. It's a condition.
Me: Okay... autoimmune condition then.

Dr. Ego: You're tired because you have 4 kids.
Me: 3. Only 3.
Dr. Ego: Then why did you put 4 on the form?
Me: I didn't.
Dr. Ego: Yes, you did.
Me: No. I didn't.
Dr. Ego, flipping through the papers, muttering, 'well, I didn't read it wrong': Oh. Yes, 3.

Dr Ego: Your memory recall is fine.
Me: Not really. I can't remember my own doctor's name, right now.
Dr. Ego: Well, you're getting older.
Me: I'm 38! And this was fine last year!
Dr. Ego: You're not as young as you used to be.

Dr. Ego: Beware of the crap on the internet. There are a lot of idiots out there.
My brain: And in here. Also, those idiots are my friends. (Hi idiots!)
Me: Yes. I know. I'm a researcher, or I was, anyway, and I can weed out the good stuff from the crap.
Dr. Ego. Don't worry yourself with this stuff though. Just stay off the internet.
Me: No, I'm a researcher by nature, and I will worry more if I don't understand. I know good research from a bunch of morons jawing on a bulletin board.
Dr. Ego. I doubt that very much.
Me: Well, that's your call.

And, my favourite:
Dr. Ego: The amount of gluten in Synthroid can't hurt someone with celiac disease. It's tiny.
Me: Any amount of gluten is dangerous to someone with Celiac disease.
Dr. Ego: That's simply not true. That amount would not be noticed by the body.
Me: That has not been my experience.
Dr. Ego: It just doesn't work that way.

*sigh* THEN, he had the nerve to tell me that other doctors mismanage Hashimoto's terribly, and that I should get my daughter a referral to him. Um. Look. I have thick skin. I left there laughing about this guy. If I took Snap there, one of three things would likely happen:

Scenario 1: Snap shuts down entirely and refuses to answer him. Eventually starts to cry. Doesn't stop for hours.
Scenario 2: Snap tells him to fuck off and die, storms out, and leaves me standing there. Then cries for hours afterward
Scenario 3: Snap grudgingly answers questions, and then is utterly furious with me for a week for taking her to him. Any new attempts to get her to a new doctor are ignored.

Okay, that was a long digression. But necessary. This old man decided by looking at me that a) Nothing was wrong with me; b) I eat too much and am too stupid to know how much that is; c) I'm too stupid to use the internet responsibly, know how many kids I have, know what is normal for myself or know what my own body is doing with gluten.

As in any walk of life, there are good doctors and bad doctors. And this week, the medical profession lost a good one in Dr. Morgentaler. What a man. He didn't dismiss women as stupid and punish them for being pregnant. He listened to what we needed and fought to make it legal for us to have autonomy of our own bodies. I am so happy that he had the courage to do what he did. Making abortion legal for women across Canada was stunning. Opening in St. John's, to hundreds of protesters, so that women had better access? Amazing. This man saved so many women's lives, it is truly humbling. Rest in Peace, good sir.