30 November 2016

Day 4: Patience

It's Day 4, and it's just barely past noon, and I'm done my challenge for the day. And that's good, because my in-laws arrive tonight, so I'm probably out from here until Day 13. And what's the theme of the day? Patience. LOL. Too timely.

Here's my entry:

Patience! Other than my niece's name, this word doesn't mean much to me. What's patience? Waiting calmly and happily for something? Waiting without complaining? Hell if I know. It's easier to recognise it when it's lacking, I think.



This is my piano/keyboard. My 7 year old son is taking piano lessons, and I've always wanted to learn too, so I'm taking lessons with him (midlife crisis? Maybe.) And what I do know is that patience is something I don't have with it. I want to be good now. I want to be great now. I want to sit down and accompany the family on a Christmas singalong (ha! Like I'd *ever* get them to do that.) I want to be able to sit at it and reproduce the beautiful music I hear on the radio. And I can't. I mean, I have a good ear, so I can pluck it out on one finger, no matter what the song, but chords and rhythm tend to help. :) So I'm learning to be patient with myself in learning something new at 40somethingmumble.

I think patience and love go together hand in hand. Remember "Love is patient, love is kind" (1 Corinthians 13:4-8), right? I think patience is love. Being patient with a crying child is just loving that child. Being patient with myself as I learn how to play Bach or a random Christmas carol is loving myself. And God loves us perfectly. God is patient with us as we screw up over and over again. Patience isn't getting angry and yelling or throwing thing. Patience is remembering to love the person. And maybe sometimes it's just acceptance of things one cannot change - like the long line of cars ahead of me or the racist attitudes of that in-law who never shuts up.

All I know is that patience is a virtue because it's grounded in love.

29 November 2016

Day 3: Thankful

Like I said, bad blogger. Missed Day 2. Oh well, pick up and start over! Today's theme is thankful. Here was my post:

Thankful. I'm so thankful. Even on days when I'm railing against the injustices in the world. Even on days when I see the forest around me being cut down for more single family homes. Even when I hear about atrocity after atrocity. All I can say is "Thank you", because I have so much. So much I feel guilty about it. And by the standards of my community, I'm not wealthy. (Funny story: When one of my kids was having various issues, we had a lot of support staff come in from the province. They would bring us gift cards from the local grocery store because they thought we were poor. We also "won" the Christmas raffle that year. Suffice it to say, that all was donated to actual poor people. We just look poor because we don't really give a crap about having "nice things").
ANYWAY, I am super blessed with Enough. Enough is one of my favourite concepts. I never pray for abundance. I pray for enough. Enough food, enough clothing, enough money, a house that's good enough, etc. And so often I get even more.
I had a hard time narrowing this down to one picture. I was considering a picture of my kids, my husband, my home, my Mom, my Dad, my birth parents for giving me up, the beauty around me, my son's team of doctors ... The list goes on. Finally, I just went through my pictures until something spoke to me.



This is a picture I took at the Autism Treatment Center of America, near Sheffield, Massachusetts. I was lucky enough to go there three times, to learn how to train people to work with my kids. These three trips changed my life in so many ways, I can't even begin to tell you how transforming it was. At the ATCA and Option Institute (they're part of the same thing), I learned that happiness is my choice, and more importantly *how* to choose it. I learned to view Autism as a blessing in my life. Everything about my life changed for the better when I went there. Bears Kaufman (Barry Neil Kaufman, should you want to find his books) and his amazing wife Samahria developed the Son-Rise program and the Option Process, and for that and them, I will always be grateful. If you're considering who to donate to this Christmas, consider them. They're a registered charity, and they do a lot of good work helping people come to their programs.

Day 2: Longing ... to be better at challenges

So evidently I suck at x-a-day challenges. I missed Day 2. It was "longing". I had nothing. I long for the end of greed. Not sure how to photograph that.

Anyway, stay tuned. I have an idea for today's theme!

27 November 2016

Advent Photo-a-Day Challenge. Day 1: Hope

Advent is here! I love Advent almost more than I love Christmas. On a Facebook page I help moderate, we're doing the Advent Photo-a-Day. Today's theme is Hope.

Hope. It's my favourite topic to blog about. There is no such thing as false hope. There is only hope. You can hope for the impossible and work to make it possible. And if you don't get there, you still had hope. Without hope, there is no motivation for anything.



This is my sons' playroom. This is where the therapy happens. This is where magic happens. My boys are autistic. My elder boy profoundly so. In this room, they have almost total control of their environment. The therapist plays with them where they're at, and pushes them to succeed. My littlest has responded so well that doctors are stunned. They throw around words like "miracle" and "amazing". My elder boy, he's not responding as well, but he has complex medical issues too. Have we given up? Hell no. While there is life, there is hope.

14 November 2016

Safety pins

Y'all have heard about the safety pin initiative, right? White people who consider themselves allies are putting safety pins on their coats as a sign that they're allies. Or something. Depends who you talk to. And the backlash is epic. From snark like "If only we'd had safety pins in 1933" to legitimate serious questions about what they mean? Does a pin mean that person will stand up and help? Or is it just a little feel-good way of saying #NotAllWhitePeople without doing any work? Good question. And I think it probably varies from person to person.

For me, I'm going to wear one. Why? Because if someone who is in a marginalized group needs help on the street, and they're scared that the response might be "Fuck off, $Slur", a little safety pin might be enough to allow them to ask for help. From something as little as "Can you help me get that off the shelf, Tall Human?" to "Help! I'm being harassed by bigots". And while the pin is no guarantee whatsoever, it's a tiny thing.

That's the thing. I know the pin isn't the answer. I know the pin doesn't really solve a single thing. I know the pin isn't something that guarantees a damn thing. But I also know that I have basically no power as a single individual. I can't bring down fascism myself. I can't end racism. I can't make my bigot brother vote for a decent human. I can't make my mother stop being afraid of minorities. I. Cannot. Do. This. I can keep talking to white people and learning from Indigenous people (the most marginalized group in Canada) and other minorities. And, I can offer a tiny sliver of hope that I am not going to hurt you if you talk to me, a sliver of hope that I can be trusted to help. And hell yes, trust is earned, not due because of a pin. But I also know if I need help, a wee clue about who might be safer than the next guy is a good thing. Mom always told me when I was little that if we got separated, I should look for a woman with children. It wasn't a guarantee that she'd be helpful or useful or safe, but it was definitely safer than a random man.

I see lots of angry people demanding we progressive white people do more. I'm not sure what it is we can do. Because the bigots don't listen to us either. We're losing friends, family, and loved ones to the hatred. We're not the victims, I know, and I'm not complaining. I'm saying that I have lost family, my friends have lost family, my family has lost friends. Because we are standing up for you. We are saying that bigotry isn't okay. And they don't care. We're writing to our politicians. We're donating money. We're educating our kids. But we're outnumbered. Vastly.

So no, safety pins wouldn't have helped in 1933. And they won't help much now either. But a question for the angry progressive people who are mocking the idea of a visible symbol of support, do tell, what should progressive Germans have done in 1933? And what should progressive Americans do now? And for the Canadians like me who are worried we're next in the fall to global fascism, what do we do? Because "Don't normalize it" isn't helping any more than pins are. We need concrete ideas. Plans. Roadmaps. Because we are fucking trying, and it isn't working.

And yes, I know this sounds like "me me me". I can't help that. The only experience I have is my own. It's simply this: I want to help. I don't know how. I'll keep talking. I'll keep listening. I'll keep writing. I'll keep donating. I don't know how much it'll help, because so far no good. But if I can be "the Mom with the kids" that someone might approach simply because I can use a safety pin, I'll do that too.

30 October 2016

Holy Halloween!

Last night, Tony and I packed up the kids into Mario and Luigi costumes (and me in Clara Irwin costume that I had to trial before FanExpo in a couple weeks) and went to the big Halloween party at the Pentecostal church in Colwood. This is a huge event for our area. >200 kids show up to get candy, see a "Mad Science" show, play carnival games, get pics taken, jump in a bouncy castle, and do crafts. It's a really big, really fun event.

Until we had to leave, that is. And why? Why did we have to leave? In the middle of the Mad Science show, which had zero evidence of any actual science in it while I was there, it became a Sunday school lesson. The stupid female assistant (of course) with the fake French accent (never did find out the point of that) kept screwing up the "experiment" and then it became a lesson about sin. He started asking who there was perfect. A few kids put up their hands. The man started laughing at them. Said he'd like to take them home because the kids at his house sure aren't perfect (cue laughter from parents). The one kid said, "My Mom says I'm perfect." He told her only God is perfect. And the Bible says... Then he literally used the word sin. And I said to my husband, "We're gone. NOW."

ARE YOU KIDDING ME?

My otherwise delightful neighbours' pumpkins a couple of years ago.


So we got up and left. I let Pop go for a jump on the bouncy castle and play a few games first, and Tony and Crackle went back to the van (which honestly, was probably good timing for Crackle - he was handling the insanity well, but it's best to stop while he's still having fun.)

So it was fun. Except for shoehorning their shitty theology into a public party for kids. So now my kid wants to know if God is mad at him for every mistake he makes. Because the stupid woman didn't really hurt anyone. She just couldn't do the work properly. But that's what the man used to say no one is perfect, and God keeps track of our sins. OMG. What was the last thing I thought I'd be talking about on the way home? The nature of sin.

Absolutely disgusting. I complained about it on Facebook, and my clergy friend said, "Ew, gross!" So I'm comfortable that I'm not overreacting.

This is one of the reasons that people loathe Christians. We must be better than this. We don't have to cram Jesus into all the secular events. I mean, we can think about his message of love while planning, so that we can make it accessible for all. We can remember to have treats that are non-food for the allergy kids. We can seek justice and make sure that the treats we're handing out aren't made by child slaves. We can be good Christians, spreading love and kindness. I wouldn't have blinked if there'd been a little announcement about their worship times. Or if they'd popped a little "Welcome to our church!" note in with the first treat.

Still pining for a good church. :(

25 September 2016

Epic Western Canada Adventure

Luna, you're tired. You're busy. You're overwhelmed. Why not put the kids in the van and drive 2000km? Don't forget, you'll need to pack pretty much all of their food, since they're too allergic to everything to even consider a restaurant. Then, when you get there, you can stay in an RV in your in-laws' yard for a few nights (with no data or wifi) before going to visit your Mom, who lives with the brother you loathe. Then, you can drive back. And I do mean you can drive back, because your husband is phobic of the mountains that you have no way to avoid. What do you say?

Great plan! Let's do that!

And we did. And it didn't totally suck! This is my favourite picture of the whole trip. That's not a smudge on my lens. It's low lying cloud. Somewhere near Cranbrook? I forget.


Wednesday, we drove to Osoyoos. That couldn't be a more beautiful place if it tried. The hotel sure could though! OMG. Dead fruit flies in the bed (got sucked through the air conditioner), dirty everything, just gross. Crackle cried when we got there. He wanted to keep driving. We'd been driving (or on the ferry) for about 8 hours. Thanked God and all things holy that I'd brought a bottle of brandy with me.

Osoyoos, from the east

Thursday - Osoyoos to Lethbridge, 750km. What a beautiful day and drive. I kept getting overwhelmed by how beautiful everything was. This may or may not have been related to the fact that I apparently cannot schedule things around my cycle.

Near Mt Broadwood

Friday - Lethbridge to Grandma's House in southeastern Saskatchewan. 805km. Can't give the exact location, because the population is literally 25ish. 25. People. I don't think it's ever had more than 50. Lots of wind turbines on the way through. 

Wind turbines near Medicine Hat
We stayed at Grandma's for 3 nights. They bought a fancy RV and put it in their yard as a guest house. It worked well enough! There was heat, water, a fridge, toilet (of sorts) and the bed didn't hurt my back. Win!

Comrades, it was good. My inlaws were nice. They were kind. They were friendly. They only tried to pick fights a tiny bit, and I didn't take the bait. It was magical. Some seriously unhappy people in the family though. :( I think the downturn in oil is really hard on them.

Harvest moon from the road in front of Grandma and Grandpa's house
On Monday, we headed back into Regina for 3 more nights. This time in a nice hotel - YAY! Comfort Inn and Suites on the northwest end of town. Can't beat that place! I didn't get any nice pictures of Regina. That doesn't say anything about Regina, just my photography skills. Got lots of nice ones of my Mom and the kids there, but I can't share them here. Sorry. Here's some beautiful prairie for you though.

My brother was a complete shithead. I had hopes things would go better. He knows about the kids allergies; it was a huge fight last time. This time? He brought home pizza. I flipped my shit. I mean, I totally fucking lost it. Pizza. This could quite literally kill Crackle. Did he give a shit? Nope.

It was really wet in some places!
On Thursday, we started back. We went through Kindersley where the Sask Energy truck in front of us ran two consecutive red lights. Hilarious. The rain was bad when we got there. Scary driving, that. Fortunately, Tony does most of the prairie driving. Hehe.

Friday was my favourite day. We drove from Kindersley's bizarre hotel (seriously weird place) to Revelstoke, via Drumheller. I love Drumheller. The geography, the history, the geology... beautiful place. 
Mother Earth has some great cleavage!
But even better than the natural beauty? The museum. The Royal Tyrrell Museum of Paleontology. Ho. Lee. Shit. I could have spent a week there. Easily. Alas, we wanted to get to Revelstoke before dark (which did not happen) so we left after an hour and a half.
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Erhmagherd. Ferrsils!
Tony carrying Crackle in. Crackle can handle most things if he gets to ride on Daddy's back.

You know how something has to really get seriously fucked on any trip? Well, that happened near Canmore. We hit some really strong wind, and it tore the lid off the cargo carrier while I was driving about 100km/hr. Fortunately, I was in the left lane, and it smashed behind me onto the highway and then into the ditch between the lanes. I slammed on the brakes, pulled into the middle shoulder of the #1 highway, jumped out, ran half a click back, and got our shit and the lid, which was smashed beyond repair (the lock was still engaged, and the hinges were fine too!), so we filled the van completely full, left the lid there (sorry!) Then I got moving again. It took at least an hour for my heart to return to normal. Icing on this shitcake? Tony had borrowed the carrier. From his boss.

At the stop 1/2 hour before the carrier incident.

HOME! Revelstoke to Home. This has to be uneventful, right? Oh no. 1 hour or so out of Revelstoke, Crackle started vomiting. Pureed pumpkin puke. My favourite! Tony got in the back with him, relocating some crap up to the front seat, and I drove. All the way to the ferry. I have no pictures of that part of the drive, because Tony is phobic. Stop where there's a view? Oh hell no. Poor man. He's a wee bit embarrassed of it too, which I think is ridiculous, considering I'm too chicken to get my teeth cleaned. 

So we're done. We're home. We're safe. Tired.

Asked each of the boys: What was the best part of the trip? What was the worst?
Pop: The best was building Iron Man! (Nanna bought him an Iron Man Lego set). The worst was leaving Grandma's. 
Crackle: (the best) DRIVE (the worst) NO DRIVE.






09 September 2016

We don't need no Education

Education in BC is dismal. No blame on (most) teachers for doing the best they can with limited resources. All the blame goes on Christy Clark for this one. As Education Minister under the drunk driving Gordon Campbell, she removed the right of the teachers to bargain for class sizes and student support in contract negotiations. That was 2002, when Snap was in Grade 1. Throughout Snap's time in the public schools, she was undersupported. We pulled her in Grade 1 when the teachers were doing a work to rule protest (I understood their point, but my daughter would not be their pawn). Put her back in near the end of Grade 3 because it was clear she needed testing, support, and the kind of special education I wasn't equipped to do then (I was very, very sick then.) She was untested until Grade 6. Then she got an LD (learning disability) designation. She tested extremely low on executive functions. This designation meant she could have an IED, an IED that was largely ignored. What it did not mean was extra funding. There is NO money for LD designations. Zero dollars. She was allowed extra time for tests, which she could take in a quiet room. She was allowed to type notes in class and take pictures of the board. That's it. In high school, we had the greatest Special Ed teacher ever on board, and she was finally tested for autism (mostly because Crackle was, and I insisted to everyone and anyone that the description fit Snap better. And because I kinda got in the ped's face and threatened malpractice. We don't see her anymore.) Once the autism dx was in, the money flowed. To the school. Our family got $6000/yr for support for her. Her school got $18,500. Do you know how much of that was spent on her? None. Not a cent of it. They offered "social skills" classes that were designed for people way more impaired than she was, and let her out of PhysEd. The special ed teacher, the aforementioned beacon of awesomesauce, was already part of the team before the diagnosis. That woman fought so hard for support for Snap. She got her into classes with teachers she knew wouldn't be dicks about it, and got her out of one class that was really bad. That teacher, omg, that teacher. Anyway, that's not the point.

The point is that the schools are so terribly underfunded that kids share textbooks, are in huge classes, don't get the supports they need, and graduate unprepared for life. And it falls squarely on Clark.

When Crackle was Kindergarten age, I considered school for him. I talked to the two school districts closest to me. One of them told me, illegally, that he would be poorly supported and in danger in their schools. She told me to homeschool him. The other told me that he would be fully supported - with an assistant he'd share with 4 other kids like him. LOL. Crackle is on his best days, a 1:1 kind of guy. The school he was going to go to is on a busy road, with a creek running next to it. He's drawn to water. He's sneaky as fuck. And I'm supposed to trust this? Oh, and when they interviewed me, they asked "How long can he be left unattended?" I laughed and said, "He can't." They rolled their eyes. Not shitting you. They rolled their eyes. Then asked in a slower, more condescending way, "No, how long can you leave him if you give him something to play with? Don't you pee?" I said, "Yes, I do pee. With the door open. And the front door alarmed." Oh. 10 minutes later, they asked his assistant, "So, how long can he be left unattended?" She said, "About 4 seconds. After that, he'll bolt." Again, with the peeing question. And she said, "Yes, I bring him in with me." After all that, they offered 1/4 time 1:1, with no support at lunch. He has food allergies and no impulse control. I think I preferred the illegal advice from the woman who made no effort to hide her distaste for children. She's the same awful human who hung up on our social worker and tried to impede Snap from getting help from Community Living.

BC kids are getting screwed. Huge classes with huge numbers of kids with IEPs in them, but no support staff. How are teachers supposed to accommodate the IEPs without the resources to do it? They can't. It's impossible.

Here's the deal: If a child has an autism diagnosis (not easy to get in this province, btw! But that's another post) the school they attend gets $18,500 to provide specialized education. However, that money is specifically NOT earmarked for that child. The school can decide what supports the child needs or doesn't need, and offer what they see fit. Now, of course, they also have dozens of kids with LD designations getting no money, so the money is pooled to help them a bit too (with small tutoring groups, for example). Kids with more severe disabilities need more money and more help - so some of the money goes there. And of course, the school is seriously underfunded for supplies and equipment, so if any of that is going to the special ed program, guess where the money is coming from? $18,500. Seems like a lot, right? Any kid who needs 1:1 support uses the whole thing, just paying the SEA. Equipment seems to come from another pool somewhere - I never did figure that out. It was always such a hassle, I bought the equipment myself (like Snap's Alphasmart) so that we could get it within the millennium. Special Ed teachers are also paid by the funding pool. So at the end of the day, there's pretty much no money left. It's painful.

Oh, and here's a new tidbit of fuckery! As of this year, in order to keep getting funding for each child with a disability designation, the school has to prove that the child still needs the support they were getting the year before. You know how amputees had to prove to the government that their legs didn't magically grow back? Autistic kids have to prove that their autism didn't magically go away too. Only now, we not only have to do that to the feds to keep our tax breaks (yet another post idea), we also have to prove it to the Ministry of Education to keep the funding flowing to the school. I'm not sure if that's true in the public school, or how they handle it if it is, but in Crackle and Pop's school, the teacher asks me a series of questions about what the kids can do and can't do, and then fills in another chunk of paperwork for them.

Is there any wonder that parents like me are fed up? We're heading for private schools, en masse. My kids are enrolled in a Distributed Learning school (what we used to call Correspondence School, except now it's all online.) I provide the school with a weekly update of what they're learning, and they provide me with access to about $11,000 of the $18,500 the school gets for them. Money I spend on getting them therapies and other supports. Things they'd have no access to in the public system. No access. Plus, I still get the $6000 in autism funding (and God Bless the people who still accept it! The funding unit pays so slowly that many places won't accept it any more) for various therapies. $6000. It's been that for at least 7 years (that's what it was when Snap was dx'd.) At that time, Speech Pathologists cost about $80/hr. Now, they're ~$120. Behaviour Consultants are ~$140. Occupational Therapy ~$100. Music therapy, equine therapy, art therapy, those all run about $80/hr. But $500/mo should cover it, right?

And what really bugs me, is that the only reason my kids are getting properly educated is because my husband has a good job in the civil service, under protection of the union, and that allows me to stay home. We can get by on one salary. We don't live high on the hog. We have a small townhouse in a strata (like a condo, for those not in BC) and when the social worker came to visit, she brought gift cards from the grocery store, because that's how poor we appear. We're not, we just don't spend on our house. At all. I can stay home, do paperwork, reports, sit on the phone with autism funding straightening out the latest snafu, hire SEAs, drive to equine therapy (which, omg, why does it have to be on the other end of the city?!), develop their curricula to suit them, do IEPs with the DL school, etc., where etcetera = teach my kids how to read and do math in such a way that learning is something they grow up wanting to do.

My kids have that opportunity. Now. Snap didn't. And I hate that. I hate that we didn't have the money for me to stay home and figure shit out when she was 8. That we didn't have the money for Psych Ed testing. She's paying for all that now. And so will so many other kids. And we'll pay for them too. Later. Either in disability, welfare, prisons, or homelessness. Because all those things rise when kids don't get proper educations. And none of our kids, especially not the ones with special needs, are getting proper educations in BC's shitty, underfunded, neglected, school system.

07 September 2016

Woo and science

I haven't had a good year. You'll notice that my most recent post was in January, and this is already September. What's up is that life, the universe, and everything (42!) has been getting me down. I've been fearful and angry. Too tired to even consider writing, never mind thoughtful writing.

But I had a bit of a breakthrough, and I'm hoping to get back on track again. Writing is good for me, even if it's just on my blog, read by few people.

One of my breakthroughs was kinda beautiful. Oh, people will judge, but who cares. I'm not entirely rational. Never have been. I go by what I feel, my gut, my instinct, whatever you wanna call it. It rarely fails me, and I often regret not listening to it. It's always kind of bugged me that I believe in things I can't see or prove, because I am a scientifically minded person. I like rationality. I like proof. I like data. But I know what I feel. I know how I feel. So it's an internal fight. I'll give up on things like God, unproven medicine, spirituality, prayer, energy, etc., for a few months, and then I get miserable, angry, and just all around shitty to people. Simply put, I feel better when I do irrational things like praying to a god I can't see, spending money on homeopathy (yes, I know! I really do!), etc. Some people tell me it's a placebo, and to them I ask, "So?" Seriously. So. Fucking. What.

If none of this is real, but I feel better, so? I feel better. I'm wasting my money on illusion? So? I feel better. Without drugs. Without doctors. Without weekly or monthly therapy. I feel better, for a lot less money than I see people spending on vacations, drinking, therapy, medications with serious side effects, etc. And what does it cost me? A few minutes talking to "myself" (God, the universe, whoever), a six bucks on a vial of sugar pills, and occasionally a therapy session with someone entirely unqualified by government to do therapy (What? You never got advice from someone without a degree?).

Now, of course, none of this means I'm going to eschew science, western medicine, or all rational thought. Of course not. I'm not suddenly going to decide my kid doesn't need seizure meds or that I'm never going to take an advil for a headache. That would be ludicrous and dangerous. I might take some homeopathy when I have a cold though. Or give some to the kids. Because if it tricks me into feeling better all on my own, that's better for me than some cold medication that can't cure the thing anyway. Or I might get acupuncture when I'm feeling tired all the time again. I feel better when I do that. Cool, eh? But quackery, Luna! Quackery. I know. I don't care.

I really got thinking about this when I saw how happy a friend is. She's really into something called Psych-K which is the woo-iest, quackiest thing I've run into in a long time. And my friend is Happy. People are searching for answers. Some go to woo. Some head for science. Some just get angry and try to bend everyone to their will, their view of how society should be. And some people get angry. They're clinging to their beliefs, angry at those who try to tell them it's horseshit, because in a way, they know it is, but they're using it to hold on to their happiness. I talked with my friend about this, because she's not particularly threatened, and she's not fearful. She thinks everyone would benefit from her program, and I don't. I think it's something that works for those who need it and are open to it. It allows them to heal wounds in a way that is different from cognitive behaviour therapy, or whatever the flavour of the day is in psychology these days. But it does work. For those people.

It's why energy healers are so popular. They're people who are really good at cold-reading people and telling them what they need to hear. Why's that a bad thing again? Because it's expensive? So's therapy. So are vacations. So is that liver transplant. I've gone to a few healers. First time was a lark. I thought it would make for a great blog post, and it was only $40. I was blown away. Suckered in, my husband said. :) But then he saw the changes in me, and how they lasted months. Months and months. (6 weeks is the usual standard for placebo effect time). And again, if it was completely placebo, if this guy tricked me into making myself feel better, how exactly is that a problem? Because it's not real healing? How isn't it? I mean, is it because the problem comes back? Does therapy cure you after the first appointment?

Or is it the "You are believing a lie" story? You can't believe in a lie, because... because that's not true. Bwuh? But if I'm getting better, how's it a lie? Because science can't prove it? Because it's been shown to be false? And? And again, so what? And hello, you know that science gets shit wrong all the time, right? And it changes all the time too. Is butter healthy? How about milk? Soy? High fat diet? High carb diet? Atkins? Ketogenic? One of my sons is on a drug that failed a clinical trial rather spectacularly. And yet it works for him. Prescribed by his neurologist, it's the best medication he's ever had. We're almost 2 years on it, so wellllll past the chance that the effect is placebo or confirmation bias. The latest and greatest in science says it shouldn't work. It does. Are we believing a lie? Or is it that science can't yet explain why it works? Same principle. So yeah, we're believing in what we see, what we experience, and what works for us regardless of whether scientist can prove it works or not. Pardon me!

So I suppose I wonder why people get so defensive about science, so frustrated with people like me who go by our senses instead of what others tell us is rational. What exactly are they trying to save me from? Happiness? Being wrong? Or is it about them being right? Is it about them needing to make me see how I'm wrong because it validates their view? I don't know. I do know that if it weren't a threat on some level, they wouldn't care at all. In the same way that I do not in the least bit care if someone thinks kale is edible, when I know it to be the most vile thing ever grown, but I don't go trying to outlaw kale. I mostly don't care what people think of my views. I really only manage to give a shit when someone is trying to get alternative medicine banned, or convince others not to go to church, or is screaming QUACKERY! at anything not mainstream in a bizarre attempt to convince others not to do the things that are helping them in some way, because the screamy angry person can't even fathom something that isn't rational being helpful. The resistance to letting people do whatever they want is really fucking weird. How's my acupuncture treatment hurting you? How's my reiki preventing you from living a happy life? Oh right, it's not. Not unless you find it threatening. And hey, that's your problem.

I have another friend, a science guy, a dude who really doesn't grok the idea of any of the stuff I'm talking about. He cannot begin to fathom that I'm happy to believe in shit I can't prove. I was telling him one day about how when I walk under street lamps they often dim or even shut off (and this was before that bit in Harry Potter) entirely until I'm past them. He was laughing, thinking I was lying, imagining things or bullshitting him. When I said that I really wasn't, he got quite upset with me that I would not take his word for it, as a physicist, that what I was saying was impossible. I was supposed to ignore my eyes, my own experience, and believe him that it was impossible. And then he visited me. And I took him for a walk. And the lights popped out or dimmed as I walked under them, and brightened up as I walked away. And he saw it with his own two eyes, and he believed me. His knowledge in physics was suddenly utterly irrelevant as he experienced it himself. My eyes were no longer lying. I was no longer a bullshit artist.

And so when I'm told to be rational, I remember that streetlights used to go out when I stepped under them (this changed a few years ago - I kinda miss it) and that a really smart physicist didn't believe me until he could experience it too. But it was real. Even if I couldn't show why. And the other things, the things I can't show in that way, I can believe them, even if no one else does, and it doesn't matter at all if it's 100% horseshit, because if a steady diet of horseshit makes me a healthy human, I'll just keep eating it up.

--Comments are moderated. Kindness would be appreciated--

11 January 2016

Do Some Harm?

Happy New Year Comrades!

The depression beast has been at me, so very little blogging has been happening. Also, Snap moved out into her own apartment, Crackle had 4 more vomiting episodes, and Pop takes a bunch of lessons, so I've been busy. I also acquired a genealogy project and got hooked on the stories. As usual. And of course, Christmas. One of our SEAs (special education assistants) quit and I had to hire a new one. So I've been a wee bit busy.

So if you've been here a while, you know how I loathe doctors. To be fair, Crackle currently has a decent team - his neurologist is fabulous, for example. But I feel like I've fluked into this, and should she leave, we're boned. I've told stories before. There was

Dr Prankster
http://feministchristian.blogspot.ca/2014/11/inhospitable-hospital.html

Dr Fuckface
http://feministchristian.blogspot.ca/2013/10/throat-punch-thursday-day-late-doctors.html

Dr Ego
http://feministchristian.blogspot.ca/2013/05/god-doesnt-think-shes-doctor-so-how.html

Dr Douchebag
http://feministchristian.blogspot.ca/2011/11/paging-doctor-anyone.html

This shitbag
http://feministchristian.blogspot.ca/2010/11/i-really-hate-doctors-okay-not-my-nd.html

And I cannot believe I forgot to document my appendix surgery last April. What a nightmare that shit was. But before I get to that, I'll explain what's got my panties in a twist about this all over again. I read these three articles this week:

Doctor misses cancer patient's cancer, probably because he was treating her as a "neurotic jew", where neurotic = female.
http://www.elle.com/life-love/a32907/i-confronted-the-doctor-who-missed-my-cancer/

Pain management doctor becomes chronic pain patient. Finds out what douchebags her colleagues are.
http://www.painnewsnetwork.org/stories/2016/1/6/a-doctor-learns-what-its-like-to-be-a-chronic-pain-patient

Teenager dies because doctors miss her cancer while telling her to "Stop Googling your symptoms."
http://www.telegraph.co.uk/news/nhs/11677561/Stop-Googling-your-symptoms-teenage-cancer-victim-told-before-death.html

And that all reminded me of this lady, who was having strokes but couldn't get doctors to believe her until she fucking video-recorded it. For fuck's sake.
http://jezebel.com/woman-selfies-her-stroke-to-show-doctors-she-wasnt-just-1595040093

So, this April, I had appendicitis. As you might guess, I'm not the first to go into an ER. I have to be scared I'm going to die before I'll go to one of those fucking hellholes, especially Vic General. But at 6pm on a Thursday, I went. I told the triage nurse my story, and got bumped from the main waiting room to the priority waiting room. I was in a LOT of pain. A lot. I was not given anything for it. In the priority room, there was a young woman who had somehow been stabbed with something in the eye. She was sobbing from pain. No meds. Hours long wait. An old man fell down the stairs and needed stitches. His wife sat there and bitched that "people with stomachaches" get to go ahead of him (Thanks, lady!) HE got a shot of pain relief.

At 9:30, I finally saw a doctor. He sent me for a CAT scan. Still no meds. CAT came back (the very next.. hour) and the doctor called me in to tell me I had appendicitis (DUH). At that point, I was offered Tylenol 3. Um, no. That shit is a nightmare for me. I hallucinate, my stomach hurts like I've been beaten there, and I get thinking everyone is trying to kill me. So I said all that and then said, "The only pain med I can tolerate is Demerol". The liar then said they don't stock that here. I said I'd wait, that I know it's available. He basically accused me of trying to customize the high I was going to get. I had appendicitis and he still treated me like a drug-seeker! Jesus. So then I said, "But I only need half the normal dose." And bingo, he went and ordered the demerol. Which took an hour for them to get to me. I was in a "room" (it was a storage closet - literally) with two other women. One was an addict with numerous issues - she was given no drugs at all, and she was shaking with pain (or withdrawal). The other, I don't remember well. So the three of us sat there in the storage closet, sharing stories and trying to manage our pain. It was awful. There was no call button if something were to go wrong. No one checked on us for 3 hours.

I finally got to surgery at 2:30am, with the same dose of demerol, long worn off. I was in pain, tired, frustrated, and scared. They took out my appendix, but not the gallbladder that I thought was the problem (and coincidentally, was completely full and really needed to come out years before). The surgeon said, "Oh, when we do gallbladder surgery, we also always take out the appendix, so yeah, we could have done that, but it isn't bothering you so we didn't." I just about cried. I'd cancelled the gallbladder surgery 3 times, and yeah, it bothers me. No one asked.

Afterward, pain management was a joke. Again with the goddamn codeine. I finally went home unmedicated because "We're not going to customize pain control for you" What? Why not? Shouldn't that be exactly what you do? I'd saved pills from after my c-section, and used those. This is why I save pills. I shouldn't have to. I should be treated with dignity and respect.

We are going to have to start demanding respect from doctors and nurses. I don't know how exactly, given their enormous power, and how badly they are overworked in ERs, how scarce GPs are, and how we literally need them for our survival. But I do know I am done. DONE. I am done being talked to as if I am stupid. I am done being condescended to. I am done being told not to advocate for myself by learning about my conditions. I am done being told to "stop googling symptoms" (even though I'm the one who figured out my husband's illness, my son's illness, and my mother's drug side effects, when doctors failed all of them.) I am done being told what I must do. Doctor's orders, my ass. Doctor's educated suggestion, that I may or may not decide to follow. That's how it will be. I'm done.

17 November 2015

The Least of my Brothers

I'm feeling a little dejected by the response of fellow Canadians to the terrorism in France. Instead of welcoming the refugees, we're burning down mosques, and beating Muslim women who are just going about their business. I'm seeing epic hate in my Facebook feed, from friends of friends, and worse, from my own family. My heart is breaking.

From a Christian standpoint, we have no choice but to bring in as many refugees as we can. Jesus was a refugee, and is a refugee today. Whatsoever you do to the least of my brothers, that you do unto me. Right?

To turn these people away is to defy God. Scripture is crystal clear on this one (for bloody once). From Leviticus, the city of Sodom to the epistles, and the words of Jesus himself, we are obligated to help. You don't get to call yourself Christian until it's no longer convenient. Yeah, you're scared. So? Did Jesus say "Follow me. Unless it gets scary." No. The whole message was to get out of the boat onto the crashing waves and trust that following love is the only way. Get out of the boat and bring in the refugees.

From a human standpoint, COME ON. These are human beings, fleeing from death and destruction. Suggesting that they are the problem is so fucking sickening, I can't even begin to even. GAH. The illogic. The irrational fear. It's mindblowing. There are 1.1 billion Muslims in the world. If they wanted you dead, you'd be dead. FFS.

I want to do something to let the Muslims who live here know that they are welcome and do not have to be afraid, at least of me. I smile as I pass by. I might start saying salaam. I'm tempted to start a movement in which white women wear a hijab to show solidarity, I'm so upset. There aren't many Muslims in my neighbourhood though, so I don't know what the point would be. (I live in the whitest city... it's almost embarrassing).

I'm angry. I'm really angry about this. Because I'm scared of what this country is becoming. The American-style hatred and bigotry is not something I want to live with. Closeted, passive-aggressive racism was bad enough. This is appalling.

Ya know, it hit me. The refugees aren't the least of my brothers. They're just people who need a new place to live. The racists, the bigots, the fearful Canadians who want to turn away people to die, those are the least of my brothers. (Literally, in one case.) I think I need to treat them with a little more patience and understanding. I will keep educating them, gently. But I will not allow them to hurt others in my space.

It's really easy to ignore the haters, or worse, dehumanize them. I've seen too many posts calling the assholes who hurt that Muslim woman in North York "animals". Dehumanizing angry people takes away their agency, and takes away any hope of educating them. It's literally giving up on their humanity. I'm not saying we can make the world perfect and that we can eliminate all bigotry by being nice. Not going to happen. I'm not that flaky. :) But I am saying that by dehumanizing, we actually contribute to the problem by not addressing it before it gets to that point. "Oh, those aren't men. Those are animals" abdicates our responsibility as a society to prevent crime, to prevent ignorance from becoming violent hate. Our previous government fanned the flames, made the problem far worse. We must not give up on bigots. We must show them the way back to civility. Even if it just means they stew quietly. That's far better than beating up people they're afraid of.

13 November 2015

Vive La France!

Oh France, my thoughts and prayers are with you tonight.

I would like to remind everyone that we do not know who did this yet. And the only thing we will ever hear is what the media tell us. The media, who are owned by billionaires with agendas.

Here's my truth: Whoever did this is extremely unhappy. They've been radicalized by their anger and hatred. The only way we will ever stop the cycle of violence is to find out what is causing them to believe this is their only option, and stop that.

I continue to support bringing refugees here. If I had room, I'd sponsor one myself. I do not (we barely have room for us!) so I will donate to Oak Bay United Church's plan.

And I will pray for peace. That the little voice inside our heads that says peace is better than war, that love is better than hate, is not ignored. May the Divine fill all our hearts with love, compassion and understanding. May the Great Spirit give us the courage we need to love those we are afraid of. And God have mercy on the souls of the people who contributed to this in any way.

03 November 2015

Parenting

This is what it is like to parent an Aspie (okay, MY aspie):
Let her do her thing. Watch her miss some details. Fix problem. Let her do her thing. Nag her not to miss the details again. Be accused of being a controlling bitch. Force her to not miss the details a few times so she learns. Be told this is smothering. Let her do her thing. Watch her miss the details again and again. Ask if she wants help. Be told to fuck off. Fuck off. Watch her mess up. Be accused of not giving a shit for not nagging. Offer to help clean up mess. End up doing it all, because she's too anxious. Ask what she wants. Be told she doesn't need anything. Start over.

I should make this into a flowchart.

27 October 2015

Passing the crocheted hat

UPDATED BELOW

What. A. Month. New government. Fewer teeth for Crackle (surgery involved). Snap got a new job and went on a vacation by herself. Pop's flying through Grade 1 faster than I can blink. Piano lessons, drives to the airport. Doctors. The constant cooking. It's a good life.

I've got little to say about the new government. I'm cautiously optimistic about Trudeau. I'm disappointed, but not surprised about the NDP's utter failure. And I'm ecstatic to see the end of the Con rule. You know, this is the first time in the life of either of my boys that we we not have Stevil for PM. It's a bit shocking, really.

I'm in a bit of a "every fucking thing is the same" mood lately. First sign of depression for me. Hopefully, I don't disappear down that rabbit hole again.

So, to get myself out of this funk, I'm doing some fundraising. A friend of mine is in her 30s and just had an aortic bypass (she's got a weird disease). Her daughters have the same disease. Her mother died from it last year. They were getting by okay. When she got sick, they held her job. When she came back and needed accommodation, they fired her. So then they were just getting by. Now her husband got laid off. They're going to end up homeless by the end of January if they don't find something. So I'm raising them some cash. If only to pay their heating bills.

It seems to me that people are more willing to donate if they have incentives, so here are some things I can do:

Ridiculously bad haiku: $5
Crochet hat: $25 ($30 if you want real wool - as opposed to acrylic). Other crocheted items possible.
Family tree/genealogy research: $50 
Custom Luna-style (i.e. full of f-bombs) video retelling of any Bible story: $100

I think the family tree research could make a great gift for your parents or grandparents. I was able to find a picture of Tony's grandmother's grandparents that she'd never seen. She'd never seen them at all, as they died before she was born. I've found marriage records for gggg-grandparents. I've proven M├ętis heritage. I've proven people were related to celebrities or descended from royalty. I've even tried to prove someone was related to Kevin Bacon. Okay.. that was me (Bacon is a family name), and I'm not related to him or Sir Francis, much to my annoyance. I am related to Bertrand Russell and Johann Wilhelm Hassler though, so that's even better.

Okay, about the Bible stories... here's the deal. One of the girls who works here has NO Bible knowledge, and she asked me what the deal was with Jonah and the whale. So I told her the story, my way, with things like, "So then Jonah said, "Okay! For fuck's sake. I get it. I will go to fucking Nineveh. Now let me out of this fucking fish. It stinks in here." And then God said, "Deal" and whale puked Jonah up onto the beach." The SEA thinks this is brilliant and now I tell her (and some of the others) the stories this way. They laugh uproariously and have told me to make a YouTube channel and do this regularly, but I don't have time for that shit.

I will also take donations for nothing, obviously. I can take an interac transfer or Paypal. The email address to use is a gmail.com address with the first part being selenie. (That's my way of not getting all the spam). You can also email that address to contact me if you are more of a cheque kinda person.

UPDATE: Here is her GoFundMe page. She's understating her need. Their washing machine recently broke and now she's handwashing all their clothes.

01 October 2015

Ban the necktie!

Today in Montreal, a pregnant woman wearing a hijab was attacked, thrown to the ground, and had her hijab torn off by two teenagers, in a disgusting bit of Islamophobic hate. I'm mad. I'm mad because I'm scared of what Canada is becoming.

The government is whipping up anti-Muslim hysteria in an attempt to win (steal) another election. They made a big deal out of Muslim women wearing the niqab at the citizenship ceremony, all two of them. Ever. They act like this is some sort of incursion into Canadian ideals. What bullshit. The incursion into Canadian ideals is the government telling women what they must wear! Canada's a free country, right? So where the fuck do they get off telling women they're not allowed to wear what they want?

Ban the necktie! It's literally a great big arrow pointing to a man's penis! Terribly offensive. No? Ridiculous? Why?

"Ban the niqab!" I've seen that particular sentiment in a lot of places. Why? Some argue that women wouldn't wear it if they weren't forced to. There are several problems here: 1) The idea that Muslim women have no agency whatsoever and that the government should step in to help them dress appropriately for Canada; 2) The idea that Muslim men are such animals that they force their wives to dress in a restrictive way; 3) The idea that the government should have the right to tell women what to wear, despite their own protests to the contrary.

Now, I don't quite understand the desire to completely cover one's face. But I also can't imagine wearing high heels unless forced to. Those are actually quite oppressive. They damage feet and shorten the achilles tendon. And yet, women choose to wear them. Why isn't the same possible?

Some say that Islam doesn't require women to cover themselves. Okay. So? Does Christianity require women to cover their hair? No? So why do Mennonites do it?
"But I want you to understand that the head of every man (that is Christian men and women) is Christ, the head of a wife is her husband, and the head of Christ is God. Every man who prays or prophesies with his head covered dishonors his head, but every wife who prays or prophesies with her head uncovered dishonors her head, since it is the same as if her head were shaven. For if a wife will not cover her head, then she should cut her hair short. But since it is disgraceful for a wife to cut off her hair or shave her head, let her cover her head" (1 Cor. 1:3-6).
So some women do. Most don't. But some do. Now, I know that niqab and hijab are not the same, and the government is not complaining about hijabis. But I'd like to see a poll on how many conservative Canadians want the hijab banned too. Especially in light of today's events. The pregnant woman who was thrown to the ground was wearing a hijab - face uncovered.

Other than the utter disrespect for Muslim women here, the most troubling thing for me is the government overstep. I do not want the government to be able to tell me what to wear. Ever. Dress codes for work are bad enough. Societal pressure is to dress "appropriately" (seriously, define appropriate for me.) Christian women have clothing marketed to them for dressing modestly (Holy Clothing, for example.) Get Jason Kenney in power for 12 years or so, and see if society's idea of what is appropriate doesn't start becoming a lot like that. Suddenly the dress code at work says skirts have to be below the knees by 2 inches. We already have to wear pantyhose in most jobs. Oppressive, itchy, uncomfortable, annoying, expensive pantyhose. I do not want the government influencing our clothing choices more than they already do.

Did you know that toplessness for women is legal in Canada? When was the last time you saw a topless woman outside of her home? Hell, when was the last time you went to a friend's house and saw a topless woman INSIDE her home. Our breasts are so sexualized that we do not uncover them in front of any man except our husbands and sometimes our doctors (though I know a number of women who will only see female doctors). But for some reason, we can't get over the idea of women covering their hair for the exact same reasons, in the exact same way! Some women go further than covering just their breasts. They won't show cleavage. They won't wear things that accentuate them. They cover their belly too. Hmm, much like how a small fraction of Muslim women cover their mouths? No? Why not? It's ethnocentrism, pure and simple.

You know what else it is? Misogyny. It is women being targeted in this latest bit of fear. Our rights. Our agency. Our lives. When you tell women what they can or can't wear, saying that their husbands shouldn't force them to wear these things, you're becoming the Daddy who tells us what we should or shouldn't wear. Women don't need anyone to look out for us. We're good. Now sure, there are abusive Muslim men. There are abusive Jewish men, Christian men, Hindu men, etc., ad nauseum. There are abusive men. Men who abuse their wives and control their actions, right down to their wardrobe. But answer me this, how many Canadian men do you know who would be okay with it if their wives went out topless? Or in a belly shirt? Or in a micromini? Or a bikini?

And do not give me any crap about how this is Canadian values. Beyond what I already said above about Canadian values including freedom, this just isn't that! Before Harper and his crew of Islamophobic dickbags started whipping up this fury of hate, almost no one gave a shit. But this past week, I was in Saskatchewan. I grew up there. Muslims were not exactly welcomed with open arms, but there wasn't hostility toward them either. I had a male Muslim friend - no one blinked when we were together. People were ignorantly racist, but not hatefully racist. Neither is good, but the latter is worse. Now? Wow. I saw a woman wearing a hijab walk through Victoria Park in downtown Regina. One person spit at her (but was a coward and waited until she'd walked past and didn't see). One person snarked, "Go back to Pakistan", and two others just glared at her hatefully. I was stunned. My own damn brother, who doesn't give a shit about politics and brags about not voting (ugh!), was watching a hockey game and he rewound it a few seconds to say, "Look. Do you see what's behind the bench?" I said, "What? A bunch of Flames jerseys?" (They were the away team, and I thought maybe he was whining that they got the good seats). He said no, it's this "piece of shit." It's was woman, in a really pretty hijab. I was floored. His stupid girlfriend (who is university educated, I might add) said, "Oh, she's wearing a babushka." Hijab, I said. She asked me to repeat it twice, and said, "Oh well, I just call it a babushka." *sigh* My brother started on about how this is Canada and this is disgusting. I shut him down, of course. But I sure didn't change his mind. The words he spoke were almost right out of Stephen Harper's pasty face. My completely apolitical brother.

And my point? My point is that when the government says things, people listen. Even people who don't give a crap about what the government says. It gets to them. And it's dangerous. If anti-Muslim sentiment can bring two kids to beat up a pregnant woman, and it did, it can affect all of us. Anywhere, any time. We must not allow the government to dictate what women can wear. Not even if we agree that those clothes are oppressive.

17 September 2015

No Harper, No Debate

So the Liberals are having a grand old time trying to bring down Mulcair because of his unwillingness to debate without Harper present. I've said it before, I'll say it again: It's a fool's game to debate an absent partner. Especially one who has such control on the media.

When it first came out that Mulcair wasn't going to be in the debates that Harper already wasn't part of, I was choked. Especially the women's issues debate. I mean, why do we need him there to talk about it? Right? Wrong. It's not that Mulcair won't debate Trudeau and May. It's that he won't debate without Harper there. So why not?

Think about your average debate. The moderator asks some questions. The candidates answer with some bullsshit, and then call each other out on their bullshit. Then they respond to the call outs with more bullshit. Now imagine Stevil isn't there, but is watching. He doesn't have to answer any questions. Instead, he gets to do all the calling out. But he also doesn't get called out on his bullshit call outs. He gets to control the dialogue, from start to finish. Dangerous!

So again, Harper answers NO questions. But still gets to use media to do all the rebuttals. There's no immediate chance for the other parties to do any damage control. Trudeau and May might be willing to play that game, but I think that's a big mistake on their part. Their words will get spun into complete misrepresentations. People who won't vote for Harper, but don't like what they think Turdeau said, they'll just stay home. Or they'll vote Green, which is basically a throwaway vote in most ridings (I'm sorry, Greens. It just is. Vote NDP this time, and we'll get you Proportional Representation, and then you can be more fairly represented!)

Where is the shouting about Harper's unwillingness to talk to the media or be part of the debates?! Where's the outrage? Why does the media continue to play his game, despite all the changes to the rules? Why aren't they shouting him down with questions everywhere he goes? It's terrifying. But instead, we're focusing on Mulcair being unwilling to let him control even more of the national dialogue? Really?

Look, I'm well and truly not a fan of Mulcair's. I don't like his stance on a number of things (cough*Palestine*cough). But so far, there have been no dealbreakers. Bill C-51 was a dealbreaker for me with Trudeau. Spin that however you want, he voted to take away my right to privacy and to destroy my charter rights in a number of areas. Deal. Breaker. Stevil... well, there was never a hope I was voting Con. I'd rather leave the country (and would have when he won last time, but surprise, it's not easy to find a country to take in a family with three special needs kids!) May? Well, I don't particularly trust her on labour issues, nor on pro-choice issues. But most of all, I don't want to split the vote AGAIN and end up with the bastard coated bastard with bastard filling Conservatives. I'd love to see her join forces with the NDP, but she seems to be a Liberal with Green undies.

So yeah, as much as I'd like to hear what Mulcair would have to say in a debate without Darth Steve, I don't think it's a good idea. It was a brilliant trap on Stevil's part though. Damned if you do, damned if you don't? Beautiful. Nice job falling for it, Libs!

13 September 2015

Medicare for Autism?

There is a group called Medicare for Autism Now who are rallying hard to get ABA therapy covered by medicare. This would be an absolute catastrophe, so I'm doing some writing.

My letter to candidates:

I am writing to draw your attention to the Medicare for Autism Now campaign. Their website is http://www.medicareforautismnow.org/ The campaign is advocating to include Applied Behaviour Analysis (ABA) therapy under medicare, as they believe that it is a medically necessary intervention for Autism. I understand that they have been writing all candidates, asking of their support. I urge you to not support this endeavour.

I am strongly opposed to this campaign. I cannot state strongly enough how much I do not want ABA therapy covered by medicare.

I believe that every child affected by autism should have quality therapy available to him or her. However, there are several problems with their campaign.

  • The only therapy they want to see covered is ABA therapy. They actively oppose any other therapy from coverage. Should medicare cover ABA, other therapies would be out of pocket for parents, and that would be highly detrimental to children who do not thrive in ABA.
  • ABA therapy is already considered the “gold standard” treatment, a sentiment I disagree with most strongly (see below). Doctors already recommend it, and are less than supportive of any other therapies. This is a problem.
  • ABA is explicitly decried as abusive by autistic adults who were put through it.
  • Parental choice would be removed as governments would remove funding in place for other therapies such as Floortime, Relationship Development Intervention, and Son-Rise. Proponents of Medicare For Autism Now claim these are not scientifically backed. This is untrue. For example, see Houghton, et al (2013) here: http://www.sciencedirect.com/science/article/pii/S0021992413000518
  • ABA is not scientifically sound. The studies that prove its efficacy are out of date and used “aversives”, i.e. punishments such as shocks, slaps, etc., which are thankfully not used any more.
  • The goal of ABA is full, unassisted integration into the school system, for which they claim a 1 in 4 success rate (without substantiation, I might add!). Dismal goal. Dismal success rate.

I recognise the very great need for good therapies for autistic people. None of the provinces fund it properly. BC is by far the best, and it’s severely lacking. Kids are going without good treatment, and in many provinces the only funded programs are ABA, run by governmental agencies. It truly is a short-sighted disgrace.

BC provides parents with $22,000 for kids under 6 and $6000 for children 6-18. Parents can have providers bill the government for up to those amounts. There are all sorts of problematic restrictions, and the $6000 is a bit of a joke. $500/mo buys one hour of speech, one hour of occupational therapy, and 10 hours of behaviour intervention. If you’re lucky. Apparently the school is supposed to provide the therapies needed, but that doesn’t happen. My non-verbal child runs away, eats non-food items, and is drawn to water, doesn’t qualify even for a full-time aide, never mind any therapies. Our family spends about $12,000 per year out of pocket for aides and other therapies. Most families cannot do that. Given the rate of autism is now officially 1 in 68, this is going to be a major problem when these children become adults who need full-time care.

I propose an alternative to the Medicare For Autism Now campaign. Rather than funding ABA and only ABA, adopt the BC model under the medicare system, because Autism is, at least in part, medical. Provide parents with a billing number and allow them to hire therapists and behaviour interventionists of their own choosing as contractors who invoice the government for their services. Have the wages of the therapies be set so that parents are protected from dishonest providers who would overcharge. Set up a cap per year, but allow parents to roll over what they don’t use. Don’t end coverage at 18. Autistic people aren’t magically no longer in need of services when they become adults. This would allow parents to choose their therapy, choose their therapists, and have control over the spending. No one would be coerced into ABA because of lack of alternatives or funding, but it would still be an option for those who choose it. It would save money in the long run because when children get good early intervention, they require less adult care.

Thank you for your interest. I hope you will see how this project, though well-intentioned, will cause more harm than good to the people it endeavors to support.


Sincerely,

Luna's Legal Name


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10 September 2015

Weighty matters

Life got weird for me a few months ago. On a whim, I went and listened to a wooooooo type energy healer guy. I wanted to see what they were about, get a funny blog out of it, and what the hell, it was cheap and I'm a bored housewife, that's what we do (joking! I'm a homemaker, not a housewife). I'm more or less convinced he's just the best therapist ever, and it can be passed off as magic. :D Anyway, I got lots out of it and started just listening to myself. And all sorts of shit started happening. The most obvious thing is that I've dropped about 20lbs. It's kind of cool. Seriously weird though.

Okay... I'm going to ramble rather honestly. Be forewarned.

I grew up in a house where fat was BAD. Where the sentence, "She's so wonderful. Too bad she's so fat" would happen. And I wasn't thin. I wasn't obese, but I wasn't thin. It was scary. What if I got fat? Would they still love me? (duh, yes!) Would I still be beautiful? Would I get a boyfriend? A husband? Would men still admire me? (this mattered terribly to me! I took all catcalls as a sign that I was still desirable.) So naturally, I got fat. It started with birth control. Then quitting smoking. Then having babies. After my first baby, I was up to about 210lbs. Then I hovered around 198lbs (size 18 or 20 on me) for years. Eventually that came down and I was at 175 lbs when I got pregnant with Crackle. Then Pop came three years later. And I was about 185 for another 6 years. Since April, I've dropped 22 lbs.

And here's the thing, I changed *nothing* except I sorta pay more attention to when I'm hungry. It's kinda weird. Doctor says I'm fine. But I think he's just pleased I'm in the "healthy weight" category. Of course, that's pretty much bullshit, but whatever. I feel good, so I'm not worried.

What is the most weird is the utterly odd relationship I have with my body. I still think of myself as FAT, obese, overweight, gross, flabby, icky... I went in to get new jeans, and when the shopgirl said, "Hmm, about a size 12?" I laughed and said, "More like 16". She raised her eyebrows and said, "I don't think so." She got me a 12 and they slipped on. And I did a happy dance. And then my inner feminist slapped me upside the head.

I'm a feminist, dammit. And I've internalized all the fatphobic bullshit. Terribly. I mean, don't get me wrong, I wasn't looking at other women and judging them for it. I was looking at them and pitying them for the way society treats them, and that sucks too.

And what else is weird? Other than this weird "my impression of my body doesn't fit with reality" feeling? People keep complimenting me on it. And getting really fucking mad at me when I say I just stopped exercising and dieting and decided to eat whatever the fuck I want, but really really paying attention to not eating if I'm not hungry. Like, they're happy for me if they think I deserved to lose weight, but furious if it happened for no reason. Jealousy? Or just angry that I didn't deserve it? I dunno.

The "stopped exercising" part? What's that about? Basically, I decided I hate it. It doesn't feel good when I'm doing it. It doesn't feel good after. I don't get a high. I don't get any tangible benefit (though there may be some I don't see) so I decided fuck this shit, I'm not doing it any more. I might hike a bit when it cools down, but only because I love sitting on the top of hills or mountains and meditating. Or singing. Which gets a wee bit embarrassing when I get caught, but only for a second. No one ever fails to grin. And that's fun.

I'm a little scared to gain it all back. Mostly, I don't care. But every once and awhile, I get a panicky feeling. And it correlates with the praise. Whenever someone praises me, I get a jolt of "OMG! They thought I was gross before! What if I gain it all back, as so many do?!" It's bizarre!

We're going to Saskatchewan to visit family in a few weeks. My Mom will definitely comment on "how good I'm doing". Mom... God, she tries. :)

My sisters-in-law will be terribly jealous, ugly jealous. And I must say, the latter at least gives me such joy. These were the women who would make comments about how much weight people were gaining, "She looks like the goodyear blimp!" and I'd say, "Uh, she's smaller than I am" (i.e. SHUT UP!) and they'd look at me, tilt their head to the side and say, "Oh, Luna..." (well, okay, they'd use my real name) in the most pitying damn voice. And now both of them outweigh me by a good 30lbs, and I'm gleeful. It's mean, and I'm definitely going to work on that before I go out there!

28 August 2015

Accommodation

If y'all have been reading this for more than this post, you'll know I have disabled kids. One of them profoundly so. I spend a lot of time and energy working at getting him accommodations to get by in the world. Special Education Assistants, IEPs (individual education plans), quieter showings of movies, disability day at the fair, getting through airport security, safety equipment, etc. We're in the process of trying to get him an autism support dog, and that'll mean a lot of places will have to accommodate his support dog.

And still yet, the hardest thing is food. Crackle is 9. He has the impulse control of a dog in a squirrel den. He is incapable of resisting yummy looking food. He either doesn't understand how sick it will make him, or is unable to resist despite the knowledge. He will take a cookie right out of a stranger's hand, and put it in his mouth. And I don't mean the stranger was offering it. I mean, it was the stranger's cookie, and she was going to eat it herself. He is ridiculously sensitive to gluten, corn, dairy, and a few other things. And that cookie would lay him out for a month. Not exaggerating. A month. The first week would be

I can't take him to church because there is food at every event and I can't keep him safe in that environment.

I can't take him to events with other autistic kids because every single one of them has "snacks" (i.e. crackers and cheese.)

I can't take him to the grocery store.

I can't take him to the playground unless no other kids are there.

I can't take him to a restaurant.

I can't sign him up for kids programs through the local rec centre. They ALL have snack breaks. Any lessons that are longer than 1 hour have a snack break. Even the 75 minute classes. WHY?!

I can't take him to other people's houses. Seriously, think about your home. Can you guarantee there are no crumbs? If so, you have no kids.

Now, obviously, I'm not asking for a gluten free world (though if global warming destroys the wheat crop forever, that'll be a happy side effect for me... JOKING. Chill.) I'm not asking for anyone to not let their kids eat at a playground. But how about one food free event per year at church? One food-free event with the autism kids. One. Just one. And really, do your kids HAVE to eat those fucking goldfish crackers in the library? The library? Since when is it okay to have food in the library? Ours has a sign up asking not to bring in peanuts. They refused to include gluten, dairy or corn. How about just don't bring in food?

And lastly, I'd like to be able to take him to my Mom's utterly pristine house. But my asswipe of a brother lives with her, and apparently, it's too much to ask for him not to drink beer or eat gluten for the few hours I'm there with Crackle for Nanna's birthday. Now, yes, beer doesn't have crumbs. But I gave him a chance. I let him drink it here at my house, and he left the can where Crackle could, and did, get it. I snatched it out of his hand when it was millimeters from his mouth. So he had his chance. How fucking selfish do you have to be to refuse to accommodate your own nephew for a few hours, so he doesn't get horrifically sick? It's mindboggling. Oh, and it's not like I'm asking this on game day, once a week, or anything. No. This will be our first time there in 6 years.

Some days, shit is easy. The heavens open up with nice strangers who smile at his noises, his movements, his socks and offer him rides on their boats or to pet their dog. Other days, I have to fight my own brother for the easiest thing ever. A few hours where he doesn't eat the things my son can't eat. It's just so frustrating.