27 January 2012

Passing the hat

You may have noticed the widget on the right. I'm asking for money. I HATE asking for money. But this is my kids. I'd crawl across glass for my kids. And I intend to even cross into the United States for them - something I swore I'd never do. Read on:

Snap is almost 17. She was diagnosed late and hasn't received treatment. She's high-functioning, but needs a little extra help. I'm not asking for this for her though, even though it will benefit her too. We can manage her help on our own. We're asking for help for our boys.

Crackle is almost 6. He's almost totally non-verbal. and almost totally disconnected from his older brothers and only nominally relates to his Dad and me. We have been praying for a miracle, while also researching and exploring medical pathways. Like every other set of parents, we want our child to fulfill his potential. Without special intervention, our boy’s future is extremely limited.

Pop is turning 3 soon. He's verbal and much more connected with us. He's higher-functioning. However, he's full of anxiety and is quite limited in interests. We want to keep him from regressing and teach him that the world isn't as scary as he thinks.

Government programs for Crackle have failed miserably. And anyway, at 6, he's all but cut off from them. We'd rather not wait for them to fail with Pop too.

In the last few months we’ve found a center that is having high levels of success bringing children through their state of autism: The Son-Rise Program at the Autism Treatment Center of America (for more information see their website: http://www.autismtreatmentcenter.org/).

I plan to travel to the Autism Treatment Center of America in April for the Son-Rise Program Start-Up Program to learn how to run a home-based program for our sons, and then I want to return for a week of intensive training. Through this training we will be able to work more effectively with the boys over the next several years to help them through their autism. The success rate of The Son-Rise Program instills hope in us for his freedom from this mysterious condition. It is difficult for us to understand fully the issue of autism and reversing it, but we are diligently trying to do so for the sake of their future.

In order for us to attend these training sessions, we must come up with about $10,000 for these two training sessions, expense of travel, and help around the house while I'm gone. Of course, we will personally carry as much of this as we can, but with a single income —and three kids—we will need some help. Therefore, we are asking family and friends that can do so, to consider helping us with the expenses associated with this training. We're hoping to raise $3000 for the first trip (see the widget).

It is not our intentions to place you in an awkward position, and we assure you that we fully understand and respect the fact that you may not be able to help. However, if you can, we will forever appreciate it.

We plan to leave for Massachusetts on April 21 , 2012 so your rapid response will really help. If you want to visit with us about any of this, feel free to email selenie@gmail.com . We would love to hear from you, whether you can or cannot help with the costs.

We would not ask this favor if it was for us, but our concern for our boys compels us to humble ourselves and ask. Thanks for reading our note, praying for us if that is your way, and for any financial help you might be able to give.

With sincere thanks,

Luna and Tony

P.S. If we receive more money than we need, we will quickly return the extra.
P.P.S. If you're not a fan of Paypal, email me, and I will provide an address and real name.

26 January 2012

DSM-V and all that nonsense

Well crap. I thought I'd posted this on Monday. I guess not. Anyway, here it is:

The Autism community is freaking out this week about changes to the autism diagnosis, and I can't say that I blame them. The high-functioning folks are worried that they'll test out - that is, be too high functioning for diagnosis and by extension, services. The low-functioning folks are worried that their autism symptoms will be attributed to their intellectual disability and not vice versa. So, for example, Jim has low-functioning autism and an IQ of 50. Jim's autism isn't caused by his low IQ, but some of the symptoms, like inability to understand complex directions, could be attributed to it. Enough of that goes on, and he tests out of autism and into developmentally disabled, mentally retarded, intellectual disability. Everyone is scared.

A classic autism symptom: lining up objects
And why not? It's not like the services we get now are even close to enough. The schools are terrible at accommodating our children now. Take their diagnoses away and there's no funding. No funding, no IEPs, no aides. No fun for anyone. And services for adults? Even worse. Just try living on the paltry sum the government deigns to give you for disability. $750/mo here in BC. Considering the average price of a 1 bedroom apartment is about $675, good luck. Especially if you need meds. Or enjoy eating.

I'm not overly concerned for the low-functioning folks. Reason being, I think the latest versions of the proposal took out the clauses about the symptoms not being otherwise explained by other developmental disabilities - that's where their worry was. I'm pretty sure they're not going to get squeezed out. The Aspies? Maybe. There might be issues there. My Aspie would certainly still qualify. Pop? Maybe not. But that's because of extensive biomedical interventions. Remove those and his symptoms intensify considerably.

There are several problems with autism diagnosis. 1) It's very hard to differentiate between unusual and abnormal. Where is the defining line? 2) It's a spectrum disorder. Everyone is different. No two people with Autism are identical; 3) There seem to be a number of underlying causes of autism. Some people have mitochondrial dysfunction. Some have heavy metal poisoning. Some have genetic copies or deletions. Some have low folate levels in their spinal fluid. Etc. To me, this means there are dozens of different disorders causing a set of problems in the same areas of the brain. And that leads to the problem I think is the worst: 4) Autism is not a psychiatric disorder. It shouldn't be in the DSM at all. Autism is a neurological disorder. It is physical. It is biological. It is not brought on by trauma or abuse. (FWIW, there are a good number of "psychiatric" disorders that are neurological)

So why are they doing this? They claim that there are too many cases of autism now. That their diagnostic criteria were too broad. Um, or how about there are more and more cases of it because of the onslaught of environmental toxins causing genetic defects? Every. Single. Family. in my complex has at least one kid with an Autism Spectrum Disorder. It's bizarre. And then I remember we live next to a golf course that sprays pesticides all over the place all summer. You cannot redefine the disorder and have any kid change. It's like changing the poverty level and then congratulating yourself for lowering the poverty rate. The bottom line is that there is a larger number of disabled kids than ever and something needs to change. But it's not the diagnostic criteria.

19 January 2012


We got a little snow yesterday. Every snow day in Victoria is Snowmageddon, or alternatively, SNOW MY GOD! Because we are not equipped to deal with it. Not enough plows, not enough sanders, and worst of all, not enough room. That is, the roads here are very narrow. Not Europe narrow, but they're certainly a hell of a lot narrower than in Regina or Edmonton. So when we get one of these babies, plows can't even get down some streets because of the cars parked on them.

Anyway, I'm not bitching. It's easier to send the kids out to play in the snow than it is in the rain. And I live close enough to walk to a grocery store, so I'm set. I do rather feel sorry for the people who live up in the hills with the glorious views of the city who can't get down their roads. Oh, no wait. I don't. HAHAHAHA.
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08 January 2012

Newt Gingrich: Asshole

Newt Gingrich is such an asshole. This is not news. The Simpsons made fun of him tonight, which is just made of win. Homer had his own show on Fox News (though they didn't call it that, it was pretty obvious) and Marge said something to him about how awful he was. He said, "Oh Marge. It's just a character. Like Stephen Colbert. Or Newt Gingrich." God, how I love The Simpsons.

Anyway. Last week, the blowhard said, "On Thursday morning, the two points came together when he said he would go to the NAACP convention and explain "why the African-American community should demand paychecks and not be satisfied with food stamps."

Um, no. There are so many things wrong with this, it's not even funny. First of all, most people getting food stamps also work. They work shitty, lousy, hard, miserable jobs for too many hours for too little money. No one lives on food stamps and is "satisfied" with it. Second, propagating negative stereotypes like 'the lazy black man' doesn't help anyone and is just plain wrong. Third, is it even true that a disproportionate amount of black people are on food stamps? I honestly don't know. This indicates that, yes, that might be the case, with the exception of the Dakotas (because hello. if you're black and impoverished, you get the fuck out of the Dakotas if you can).  So, is one's conclusion that black people get food stamps because they're too lazy to get good jobs? HELL NO. Could it be that black folks get crappier jobs and need food stamps because of racism? Hell yes.

Now, when I first heard what Gingrich said, my first thought was "YES!" but that's because I was coming at it from a socialist angle. Hell yes, the impoverished working class should stand up and say "NO! This is not enough. This is not acceptable. We need good jobs. We need benefits. We need health care. We need good food and good food availability. We need daycare. We need to be paid what we're worth." But that's not what Newt was saying, and I knew that immediately because I *never* agree with that over-privileged piece of festering shit and so I had to step back and figure out what he was saying and what I was hearing and how they differed.

I used to joke that Canada had elected Newt Gingrich and a parliament of Newts and Kucinichs. But Newt? He's like Harper if he thought he could say whatever he wants. Like drunk Harper. It's scary shit. I mean, this is what he's saying while campaigning? What the hell would he do with power?

04 January 2012

Merry Christmas!

It's still Christmas until 12th Night. So there. Another Advent, another Christmas. Come and gone. Onwards to Epiphany, which I think is my favourite celebration of the whole Christian year. Because I'm weird. But you knew that.

This year, all through Advent, I told everyone and anyone that I wanted charitable gifts for Christmas. Didn't get a single one. I think people are way too set on the idea that they have to give a Thing. I told my Mom that I'd like some of the dried garlic she got me a few years ago, and that was enough. With the rest of the money, buy an Oxfam gift. No. She bought me a casserole dish I don't need, Tandoori spice with recipes (all of which were for meat - I'm vegan. Mentioned this to Mom. She said, "Well, some were chicken." Uhhh, okay... I said, "Chicken is meat. I don't eat it." Mom: "Not even a little?" Oh well. Tandoori potatoes?), some plastic cookware I won't use (PLASTIC? In the microwave? No way.) Now, I don't want to sound ungrateful. I love that she was trying to help me out in the kitchen. God knows I spend enough time there what with all the allergies. But I didn't need all that stuff. And someone did need to eat. Or be protected from malaria. Or have a place to go if her husband was beating her. Or have a warm place to sleep.

[AC] Promo 2011 from Advent Conspiracy on Vimeo.

It's not too late. The problems aren't gone.

Oh Christmas. I love Christmas. I love seeing the joy on my little guy's face when he opens a present. I love the lights. I love the hustle and bustle. I love the food. I adore the mulled wine a little too much. I love the message of being saved. Of God's love, Of hope for the future.

I didn't love that Crackle was so sick from gluten (RAAR. HULK MAMA MAD. AUTISM SERVICE PROVIDER NOT KEEP BABIES SAFE FROM EVIL AWFUL GLUTEN! HULK SMASH. HULK NOT SEND BABIES BACK TO THEM.) We couldn't even go to church because Crackle was absolutely hysterical all day on the 24th and not much better on the 25th. We're at almost 4 weeks post-gluten and he's JUST getting back to normal. Like today.

So why do I like Epiphany? It's pretty simple. And somehow I can't quite write it. Revealing God the Son to the Magi, the wise men from afar, made it clear that God's love is for everyone. That we're all the same. That there is no room for intolerance, bigotry, racism, or hatred, in Christ. There's no "Us" and "Them". Everyone "belongs" to God. We are all of God. And it doesn't matter if we call him God, Allah, Jehovah, Yahweh, Vishnu or any other name. And it's okay if we don't believe. God loves us. Pretty sure God would like to be acknowledged and loved back, but also pretty sure he's got his big boy panties on and won't condemn someone to an eternity of misery for not seeing him. My God's just not vindictive that way. Better not be, because I've gotten pretty mad at God a time or two. Like shaking my fist in anger and screaming, "FUCK YOU. YOU BASTARD!" kind of angry. We're good now though. Mostly.

I so wish people would stop twisting the message into "Jesus is for everyone. Therefore everyone MUST have Jesus as their Saviour OR ELSE!" It's not that God isn't Great (as the late Christopher Hitchens said) it's that people are pretty damn good at Missing the Fucking Point and/or Warping the Message.