Thursday, May 2, 2013

Autism, hope, help and useless governments

Yesterday, there was a piece in the news about a woman who dropped her 19 year old autistic son with the government and left. Oh how I feel for her! What a heartbreaking decision that must have been. She had no hope left. And no resources to give her any respite from it. I suppose she clings to hope that this will be a better situation for all of them. I am praying for her. And all the parents and caregivers who are at the end of their ropes. I'm voting for the NDP, because they promise more help than anyone else. And I'm writing to everyone who might be able to help.

Here in BC, the situation isn't much better once your child turns 19. There's no more autism funding. There's $905/mo in disability welfare, that you can use as you see fit (this is assuming the 19 year old is unable to manage his or her own money at all, like in the case above where he functions at the level of a two year old). Depending on the person's needs, that may not cover even a quarter of what is needed. It costs me and the government combined (my own cash + autism funding + respite + distance ed school disability grant) about $3500/mo for Crackle - my most seriously disabled child. When he turns 19, his needs will not change. But we will lose all but $905/mo of his funding. Here's hoping his needs change considerably by then!

Crackle has been particularly loud for a few weeks. The kind of loud that makes my eardrums throb by days end. Not exaggerating. Days like these are the ones that make me truly understand how someone could lose it and say "Enough. I cannot do this any more". But I have hope. And he's only 7. And he likes to cuddle with me in the morning. And he's learned to kiss me. Hugs me when I ask. And even when he's screaming, he's happy. I think.

Yesterday, the woman who spends 6 hours a day here quit. Gave 30 days notice. Eep. The day before, my strata voted for a $20,000 levy from each unit so that we can do major renovations. That's right. I have to come up with Twenty Thousand Dollars. By June 3. The whole summer will be filled with renovation noise. Crackle loses it when the gardener mows the laws. Or when the vacuum is running. So, we will have to go spend time in the forest. But... the SEA quit. EEP. And to top it all off, my ultrasound revealed that my already serious gallstone problem has developed into intrahepatic dilatation (the stones may be backing up into my liver) and so I'll probably need surgery sooner rather than later (or never, as I had planned). And now there's no one to help.

Furthermore, I promised Snap a trip to VidCon in August (already mostly paid for - non-refundable) and I'm going to the Son-Rise Maximum Impact class in October (already half paid for - non-refundable, but possibly delay-able).

So, if you're the praying sort, I could use a few prayers. I don't think that God just drops in loads of cash, but maybe God could nudge some help my way? Hint hint, Old Dude In the Sky! Or Pretty Lady in the Forest. Whatever you're calling yourself this week.

I still have my hope. But I'm rapidly running out of patience. :)

x-posted to Feminist Christian Socialist

Tuesday, April 16, 2013

Hope for the world

The events yesterday at the Boston Marathon were stunning. That someone could be so deliberately cruel breaks my brain. Naturally, some people are turning to prayer and some are turning to vengeance. I even saw a call for genocide, by someone who leaped to the conclusion that this was an act of Islamic terrorism, and to the further conclusion that somehow killing every one of them for the actions of a few would somehow be fair. And some people, who are neither religious nor genocidal are shaking their heads with sadness, and trying to somehow find something good in it (some of us religious people are doing that in addition to the prayer.)

All I've got is this: Good shines brighter than evil. And there is SO much more good in the world than evil. So so so much. It's really hard to remember that when we live in the time of 24 hour news, and violence leads. So many old folks tell me the world is going to hell, and it wasn't like this when they were young, but I look at the crime rates, and yes, it really was. They just didn't have CNN piping it into their living rooms telling them how bad everything is.

I have hope for the world. Look at how people come together in a crisis. I do hope that we'll learn to come together without a tragedy. It might take revolution. It might take an epic disaster. I hope not.

Sunday, March 31, 2013

Happy Easter!

Hallelujah! Happy Easter!

Easter is one of my favourite days ever. I love the imagery. Not so much of Zombie Jesus, but of Love Never Dies. Hope Reigns. A New Day Dawns. Resurrection from death. My friend Mary Ann Dimand said this:
Christians have a special reminder today that all is not lost, that every human is precious and important, that screw-ups are not final. Today is a good day for new beginnings, toward the furtherance of life.

(So is every day.)
YES! She's so right. It really doesn't matter if it happened literally. What matters is that we remember the message, and start over, trying to get it right.

Speaking of getting it right, I'm seriously impressed with the new Pope of the Catholic Church. Not enough to go back, but impressed nonetheless. He renounced his infallibility this week. He washed the feet of women (one of them Muslim - though I have to wonder if she wanted that, or if she was ordered to by the warden. I mean, would a devout Christian want an Ayatollah's blessings? I don't know). He's not living in the papal palace. He's got a strong agenda of helping the poor. Let's see where this goes!

As I've mentioned, my church is closing. This bothers me, but all is not lost, and some good is already coming from it. The community garden that was housed at my church went looking for a new home, and resurrected the one next door to my house, meaning that I won't lose my two plots like I thought I would. That's wonderful, because I really enjoy gardening, and some of the people there rely on it for a lot of their food. And we donate a fair portion to the food bank. So glad it's not going to close.

Today was a perfect day. Happy Easter.

Sunday, March 17, 2013

Preaching again...

So they let me talk at church again today. YAY! I love doing that. Love it. This is more or less what I said (I went off script a few times and I did use my kids' real names):

As always, thank you. I’m honored to be asked to talk and very honored that you didn’t find something better to do. :) Because of the impending closure of the church, we’ve been talking about grief this Lent, and the five stages of it that Elisabeth Kubler-Ross identified. Today, I’m going to talk about Acceptance, the last stage.

I'd like you to imagine something with me for a minute. You're walking downtown one day and you see a lady talking to a homeless person. The homeless guy is laughing and smiling. She hugs him, smiles and walks away. There's something about her. Something kinda awesome. The easy way she walks and smiles. The smile in her eyes. So you smile at her. She smiles back and says hello and introduces herself as Susan. Susan is the coolest person you've ever met. She talks all the time of how Victoria doesn't have to have homeless people. She has ideas on how to end poverty. How to fix the healthcare system. How to help the drug addicts. You’re seriously impressed. Her ideas are brilliant. Innovative. And simple. Not easy, but simple.

Susan tells you you can help. She convinces you and a few others to quit your jobs, sell your house, and work with her. SCARY! Your family thinks you’re nuts. They’re pretty sure you’ve joined a cult. You’re pretty sure they just don’t understand. But you have doubts sometimes. Like when Susan wanders off by herself and tells you to wait and then yells at you when she gets back because you had the nerve to doze off. But otherwise, you’re pretty happy. I mean, she’s got these great ideas and plans, and promises you it’ll happen. She’s just so damn sure of herself.

And then one day you hear that the government is going to cut down Cathedral Grove to make a few bucks. OH HELL NO, she says. You and Susan and a bunch of others march your butts up there and she blows a gasket on them. There’s none of this passive tying herself to a tree for Susan. Oh no. She throws them ‘em all right out. And draws some uncomfortable attention to herself. And you.

Now your family is really pissed off. Your friends are telling you to get away from her. People who kind of were sympathetic to her cause, they’re mad, because she’s telling them, “No. It’s not enough to throw a couple of bucks to the homeless. It’s not enough!” and “Yes, you really do need to help sex offenders”

And then she gets arrested. You all knew it was coming after that stunt at Cathedral Grove. The media is calling her an eco-terrorist, mentally ill, a cult leader. And then you hear the worst. She’s dead. Died mysteriously in jail.

Did I mention Susan is aboriginal? Yeah. So no one cares. She’s just another dead indian as far as the cops are concerned. The media doesn’t care. She’s got no family with political clout. You’re just some homeless lunatic who followed her around.

Well. Holy. Crap. She said she could fix things! She SAID it would happen! That it was happening already! How could this be?!

That’s what the apostles were facing [Acts 1: 1-12]. They were broke homeless followers of a dead Jew in Roman territory. They had some choices. They could have just closed up shop so to speak and went their separate ways, got jobs, went back to their families, whatever. But they didn’t. There’s no mention of screaming, crying, fighting, desertion... In the next verses they go about finding a replacement for Judas! They were definitely confused though. They were seeing the resurrected Jesus here and there, and they asked him just before he ascended, “Lord, is this the time when you will restore the kingdom to Israel?’ So, they still didn’t know. They didn’t understand. And then he said, ‘It is not for you to know the times or periods that the Father has set by his own authority. “

What?! You’re not even going to tell us when? Then what are we supposed to do?! But no. He didn’t answer. He just rose into heaven in a pillar of light, leaving them standing there dumbfounded.

So how’d they do it? How did they just go on?

It’s very simple. They still believed Jesus. They still believed that the world he spoke of could exist. Even without his physical presence. Their mission didn’t change because he was gone. They didn’t believe they needed him there to do what they needed to do.

That’s what always stops us from accepting. Hanging onto beliefs that no longer serve us. I’m going to explain in a second how to do that, but let me go another direction for a minute.

I’m really good at grieving. That is, I can rock the stages of grief. All of ‘em. In one day. And back again. Heck, I can rapid cycle through them like I’m channel surfing. WHILE I’m channel surfing. I don’t just stop on acceptance, oh no. I flip back to anger. Example. The church closing. You’re probably wondering why I am the one talking about acceptance if you know just how I’m feeling about that! :) I’m damn good and mad. I hardly believe it’s happening! And I keep coming up with ways to fix it. And I’m sad. And I TOTALLY GET IT. It’s going to be okay. But damn it, I’m mad! See? All of ‘em, in seconds.

I think Erin asked me to talk about this because of my kids. And, as she put it, because I’m not Little Mary Sunshine. Not by a longshot. But I’ve done a very good job of accepting the loss of the dreams I had for my kids. I’m actually in a place now where I’m grateful for autism. Seriously. And here’s where we get to changing beliefs.

When I first started coming to grips with the idea that my kids are autistic, I was livid. SO MAD at God. SO MAD at pharmaceutical companies. FURIOUS with pesticide and herbicide companies. I’m still not a fan, but I’ve let go of the anger, by and large. I hated autism. It stole my children. That’s what I believed.

But I changed that belief. How? I got to the root of the issue which was that I was unhappy that they weren’t going to have the life I wanted for them. And I realized that children aren’t here to fulfill my dreams for them. I can be happy for them and with them no matter what life they live. If they had been neurotypical and chose to do things I disapproved of, I’d still love them and still be happy for them. So how is this different? It’s not. Simply put, I can be happy without getting what I want. I can be happy in any situation, if I choose to be.

And sometimes I don’t choose to be. Because I like the belief I am holding on to. And that is O.K. Period.

But how did I get to grateful. I love the looks on people’s faces when I tell them I’m grateful for autism. They range from disbelief to pity to utter incomprehension. But here’s why I’m grateful. Autism means I get to celebrate every single little step my kids make as a big giant step, because for them, it is. Crackle’s climbing up into his seat to eat at supper now instead of trying to use the table as a trough he can graze at. Doesn’t seem like much of anything to most parents. To me, this is cause for celebration! I miss nothing. I take nothing for granted. It’s absolutely the most rewarding thing ever. Pop is almost recovered from the parts of autism that are challenging. It’s so so so awesome. He’s still got all the quirky thinking, and I hope that never goes away, because he’s sweet and brilliant. He says things like, “Mommy, I am so proud of you. You are such a good Mommy” and “Mommy, Crackle can’t talk, but he loves you.” And he counts when he’s anxious. He counts things, counts by 5s, just counts. It helps him. And how cool is that. I have a 4 year old who can help himself calm down. And Snap! She’s 18 now (on Tuesday) and she’ll be graduating from high school in June. That’s HUGE for Snap. She’s got learning disabilities, Aspergers, and anxiety problems that make coping difficult. I have hope that one day she can live on her own, but no expectations of it right now. Scary, and I could choose to be upset about it, but I’m celebrating how clever she is to find a social community on the internet. She can use Skype to talk to new people. She’s got something like 4000 followers on her blog. I have a whopping 27. She’s trying so hard. I am so amazingly proud of her. Even though I never ever would have chosen this life for her. I am happy.

Acceptance is a pretty simple concept at the core. It’s “I can be happy even though I didn’t get what I wanted. I can be happy to work toward something else I want.” I didn’t want autism for my kids. But I can be happy with it, be grateful for the opportunities it has given me, AND work my butt off to help my kids recover from it.

Sometimes the beliefs that are holding us back are pretty ingrained. Mine are often based on judgements. I used to think I was very non-judgemental. Then I went for the Son-Rise course on autism where we learned this process of acceptance and happiness - it’s called the Option Process - and I discovered that I’m very judgey. Just in different ways from most people.

My deal? I can accept people as is if I perceive their behaviour to be reasonable. And I judge what is reasonable. Nice filter, eh? Old lady taking 10 minutes to count out nickels at the checkout? No problem. She’s old, blind and has arthritis. Reasonable. Young woman taking 10 minutes to check his lotto tickets ahead of me at the checkout stand? JERK! Same amount of time. Judgement about the reasonability of the situation determined whether I was going to be happy about it or not.

I’m working on it. I swear. For Lent, I gave up NOT letting people in in traffic. Because it made me SO MAD when people would jump to the front of the queue. How dare they? And then one day, I had to pee, and I did it. And it hit me. What if everyone had to pee? What if I just decided to believe they did? I’d already decided to believe they were jerks, why not turn it around and decide they just needed to pee? Or that the babysitter called to say their kid had a seizure. Or that their wife was in labour? Why not choose to believe the happy thing? Because it’s less plausible? Says who? Why do I have to believe that people are inherently bad when I can believe they just have a full bladder? I’m much less likely scream and swear in the car now. It’s nice. :)

Any belief can be changed. Anything we’re unhappy about, we can accept. That’s can. Not must. No one is saying that unhappiness is a bad thing - that’s a judgement. I’m saying that if you are unhappy about something and are tired of being unhappy about it, you can let it go.

Look at the grief people feel after losing a loved one. Absolutely no one is saying, “Be happy! Your Mom died, but who cares?! You can be happy!” Nope. But eventually, we move on. They’re still in our hearts, but we let go of the belief that we can’t be happy without them, or whatever belief we’re holding. Usually, we don’t do this consciously. Sometimes, like in the case of break ups, we do. “I loved him so much! How could he do this to me. We were perfect together!” “Oh honey! You’re better than him! He’s a jerk!” “You’re right! He’s a jerk! Good riddance!” And it’s more than sour grapes. It’s saying, yes, yes, I can live without him, and no, I didn’t need him. All those flaws I was overlooking - choosing to believe weren’t a problem - well, now I’m changing that belief.

And sometimes, all we can do is what those disciples did. Trust that Jesus was right. That God has a plan. That we’re part of it. And even if it’s not going the way we want, we can choose to believe that it’s the right thing, and that it will be okay. And that can be acceptance. Oh sure, I might rapid cycle back to mad, sad, outright denial, bargaining, anger again, denial again, but, if I want to, I can always find that place of acceptance if I trust God and let the Spirit guide me.

Saturday, March 2, 2013

Healing Pathway retreat, day2

Day 2 of my workshop retreat was awesome. The morning was a workshop on Encountering the Wise One. It was guided meditation and a lot of information from a woman who was a catholic nun, then trained in the shamanic tradition for 16 years. She had more knowledge of spiritual matters than anyone I've ever met. One of the most interesting ideas was a way of understanding how Jesus Christ could be fully human and fully divine at the same time. It was that he was a human who stepped into the Christ energy and didn't step out. Fascinating idea. She named the energy of wisdom Sofia and we meditated about her, asked her questions, and did some drawing. It was very woowooo, but I wanted new experiences, and was open to them. It was really quite interesting.

Lunch was... interesting. I blogged that encounter at my other blog.

The afternoon was a singing workshop. There wasn't a lot of energy healing, or even a lot of talk about energy. It just seemed like choir practice, but it was enjoyable enough. I was very proud of myself for doing what I needed. The lady next to me was singing the tunes quietly while the leader was talking, and it was annoying because a) she kept missing notes; b) I couldn't pay attention properly. So when the leader asked if everyone could hear, I jumped on the opportunity to tell the woman next to me that I couldn't because she kept singing while the leader was talking. She was so mad at me, but honestly, that's not my problem. I asked her politely not to do something that took away from my enjoyment of the class. It was her choice to react in anger. Had I not said something, it would have been me who was angry, at both her for doing it and me for not saying something. I am often too passive in situations like this, and I did what I needed to do, for me. So I'm very happy with myself. I'd prefer that she were happy too, but that's not in my control.

Friday, March 1, 2013

Healing Pathway

I went to an HPV retreat today. Okay, they really need a new acronym, because that is not supposed to conjure visions of STDs at all. It's Healing Pathway Victoria. Seriously. I don't think they have any idea. Or maybe they don't care. I think they should change it to VHP, but what do I know? :)

Anyway. Healing Pathway is crazy spiritual healing mumbo jumbo that my left brain can't make sense of but my right brain loves, and seriously, who cares, because it's awesome. It's spiritual energy healing from the tradition of laying on of hands. It's lovely, warm, comfortable and powerful. We gave and received several treatments today, and I can honestly say they moved me to tears a few times. When we shared love, I could physically smell my Mom's perfume. When we did distance healing, the man who did mine (and had NO knowledge of my physical issues) correctly dx'd several of my problems. That wasn't his intent, mind you. He only told me afterward, "There seemed like there was something really wrong and heavy right here, by your stomach, and so I worked on that". He pointed to the spot. It was my gallbladder. My gallbladder is completely filled with stones and is due to come out soon.

Yes, I know, he could have guessed, I could have been showing him somehow. I honestly don't give a crap. Because it felt good, and I came home feeling good. I'm floating on it, and I'm not going to let my logic take away the peace. :)

In the morning, there was just a lot of praying for something on the love spectrum (like compassion or mercy or joy) for a particular person. That was magnificent.

Tomorrow is two more workshops, and I'm looking forward to them very much.

Friday, February 22, 2013

Small miracles

[some how this didn't get posted when I meant to, so you get a two-fer today]

Last weekend at church, the lovely and talented Rev. Erin said something that has really stuck with me (yes, Erin, some of us do listen. :)) She was talking about the urgency of sharing the Good News. We all know the kind of people who are sure that you are going to hell if you don't accept Jesus into your heart and be born again. Like literal actual factual burning in hell. Like my friend Erin, I don't much believe in an afterlife hell. Hell is here on earth. And the Good News is that it doesn't have to be that way if we just love one another unconditionally.

How's that for hope? Starving? Don't worry about it, someone will feed you. Sick? No worries, someone will heal you. Too sick to watch your kids? No problem, someone else will. We're not there yet, but we can be. How awesome is that?!

What I'm learning, the hard way, is that those people are out there, willing to help, but most of them aren't actively seeking out people to help. So I'm advertising for them. Not kidding. I have been advertising for people to volunteer in Crackle's playroom, doing Son-Rise therapy with him. And they're coming. Really good quality people made from chocolate covered awesome. They're responding to my ad asking them to come and learn how to play with him in a way that helps him learn. I've got 2 fabulous volunteers right now, I interviewed a new one today [addendum: she's amazing! I love her], and am meeting someone else tomorrow [also freakin' amazing!]. I've had several people come and try and it didn't work out for various reasons. But they tried. and that's truly wonderful.

I have people who are willing to commit to a minimum of 4 hours per week for 6 months. I have one who spends countless hours with them because it's fun, and she loves the amazing little gains. She was screaming with glee yesterday because he said "poop". And because of my amazing volunteers (and one paid worker), my kids are making huge strides. Pop wouldn't even get a diagnosis today, I'm willing to bet. Crackle? Crackle spoke. He. Spoke. I cannot tell you what a miracle that is. That's the kind of miracle Jesus spoke of. The good news that it doesn't have to be that way. He spoke. Oh sure, he just said, "poop" and "Dad" and "hey baby" and "up room". But he's 7. And they told me if he didn't talk by five, he never would.

So those are my miracles. That my kids are recovering (miracle 1) because strangers are volunteering their time to help (miracle 2). And that I found out about it in the first place!