“The world always makes sure that you cannot fool yourself for long about who you really think you are by showing you what truly matters to you.” -Eckhart Tolle
My head has been spinning a bit this week. A couple of things happened last weekend that I missed, the first of which was that our best friends moved away from our home town in Montana and I wasn't there to hug them way too hard for way too long, sobbing uncontrollably and begging them to stay. I wasn't there to help load the truck or chase it down the street when they took off. Why I had the urge to do these things is a bit beyond me, especially since I don’t live there anyway. What difference does it make to me where they live? I think I just wish I could’ve helped, wish I could’ve taken the opportunity to show them my love in a way that they could see with their eyes.
The other thing that happened was that my old church camp had a reunion, and I wasn't there to… well… re-unite. Instead I was at my house in Arizona, trying to decide whether or not to remove the ceiling fans and face-plate covers from the electrical outlets before listing it on Monday.
I decided to keep the face-plate covers, and as I was unscrewing the stupid little things from the walls and replacing them with the old, white plastic ones, I thought about everything I was in the process of missing. And it brought to mind an activity we did at that camp one year when I was maybe fourteen or fifteen years old. The camp staff put together a treasure hunt, of sorts, for us campers. We had to go through a series of obstacles, and if we made it through all of them then we got to go to heaven. I know. But try to set aside any specific religious ideas and humor me for a moment if you can.
One of the obstacles in the course involved getting past the “Demon of Pride.” It was really just a camp counselor dressed in black with some sort of ski mask over his or her face. Each camper was given an item. It was something silly… like a bible maybe. Or a mitten. Hell, I can’t remember. And the idea was for us to give our items up to the demon. We weren’t told what we were supposed to do however. We were supposed to just know.
Now, I must say that spiritual principles have never come quickly to me. In fact, to this very day I have to sit with a spiritual principle for some time before it starts to sink in. This one sort of makes sense to me now – that you can’t fight pride with pride, because if you do then pride wins anyway. It also has something to do with detaching from things I think (people, places, things, situations, specific outcomes, old ideas that don’t work anymore, etc.). But, at the time, I just didn’t think very abstractly. And it just made no sense to me what-so-ever why anyone would give anything to a demon.
He/she jumped out of a bush, growling loudly and grabbing for our items. It was so dramatic that I really had to focus in order to keep from rolling my eyes. The kids I was with handed their items right over to the demon. That baffled me, and I really wasn’t sure what I should do. Long story short, I ended up in a wrestling match with the “Demon of Pride.” And as I walked away from it, still carrying my item, he/she yelled to me from behind, “But you were supposed to give it to me!”
I wasn’t allowed into the next obstacle with my item, so I had to go all the way back to the bush and find the demon. There was no growling or grabbing that time, just a disgusted set of eyes encircled in black ski mask, and an outreached hand. I gave my item to the demon with a red face. And shockingly, I still managed to leave camp that year having no more idea of how to let go of things than when I got there.
Someone is going to buy our house, along with everything we've put into it - granite, built in Bosch appliances (you can stick a whole chicken into a Bosch dishwasher, by the way, and it will magically disappear – just sayin'), and cherry wood floors, for almost $60K less than we bought the house for three years ago. And we’re among the lucky ones around here I’m afraid.
And we’ve found out why Shane’s company said “no” to Shane doing his job virtually. They’re re-organizing the whole team Shane works on, which means that everyone on the team is in danger of being “displaced” (which is a nice word for “laid off”). Now, they’ve assured Shane that he’s a valuable asset to the company (he’s also an MBA hire which is a hefty investment on their part), so the picture probably isn’t as grim as I think. But still, change is definitely in the air.
Shane has been applying like crazy for roles on other teams within the company (some virtual and some not) in part because of the re-org., but also because we’re still waiting to hear whether or not Cale will be selected for Montana’s early invention program. If Cale is selected, then we’ll drop everything and move to Montana (job or no job). And if he's not selected, then I'm not sure what we'll do. I suppose it'll depend on whether or not Shane gets stuck working here in Hell, oh... I mean Phoenix. In a nut shell, every possible thing in our lives is up in the air, and all we can do is wait and see where everything lands.
It’s kind of strange actually. After all the work we’ve put into our house, I thought I’d feel some sort of sick, heavy sadness about letting it go. But instead I’ve felt the exact opposite. I’ve felt relief, almost like I’ve been digging my way out of a tunnel with a teaspoon and I can finally see daylight. And we don’t mind letting go of Shane’s job if that’s what happens. We’re creative, resourceful people who can probably get through whatever comes. Alden and Isabel would probably do fine in any school in any city.
The only thing I really care about is whether or not Cale gets selected for Montana's Early Intervention program, because I still think it might be his last best chance of learning how to talk. They’ve already had one drawing in which Cale wasn’t selected, but there’s one more drawing before his birthday (which is the deadline for selection) so I still have hope.
You wouldn't believe what I've gone through to get Cale ABA therapy here in Arizona. Because we don't have insurance that covers anything for Autism, I've had to rely solely on state help. Arizona only provides Cale with two and a half hours of ABA therapy per week, and it’s actually ABA parent training, not direct ABA therapy. The therapist comes to teach me how to do ABA therapy with Cale, not to work with Cale directly.
Doing the therapy with Cale myself has been great for teaching him basic daily life skills. But for something as extensive as teaching him how to talk, I simply don’t know how to put in the needed hours. Not without neglecting my other two children anyway. Plus, I don't really know what I'm doing. When it's me trying to do it with him alone, it just turns into a big power struggle and makes us both miserable. It's excruciating to be in the position of having to decide whether to do therapy with Cale or to be there for my other kids, especially because Cale screams and cries and fights me the whole time I try to do the therapy with him.
Every day for the whole past year I’ve had to make decisions like - should help the kids with their homework and make dinner, or should I make Cale scream for another hour? Should I clean this massive, disgusting house for four hours or should I make Cale scream for four hours? Should I take Alden and Isabel to the birthday party, or should I make Cale scream? Because if I don't make Cale scream, he might end up in an institution some day.
It takes the whole "bad mother" thing to a whole new level. I'm a bad mother because I don't take Alden and Isabel to the birthday parties and, at the exact same time, I'm a bad mother because I can't get Cale to talk. And when I decide that I simply don’t want to make Cale scream, I’m a bad mother for not trying.
Not only is this what we've been doing for the past year, but it hasn't brought anything but the slightest of results. And it's extremely difficult to not resent your child when everyone else has been neglected so that he could have his needs met, when he’s fought it tooth and nail every step of the way, and when he still hasn’t made any progress.
The state of Arizona gives us these two and a half hours of ABA parent training per week, and will for an extra year past the age when they would ordinarily stop, because I'm the biggest, whiniest, loudest mouth around. I’ve learned how to be a very persistent pest. But they've repeatedly assured me that this is absolutely the most we’ll ever be able to get for him here. In Montana, if he gets selected for the Early Intervention Program, he will get 20+ hours of one on one ABA therapy per week, direct from a master's level therapist that isn’t me. Oh, I hope he gets picked.
Cale is going to be five years old next month. And if he passes the age of five without talking, then his chances go down. It's not that he wouldn't sort of learn how over time (maybe), but the chances of any real, significant, steady progress goes way down. My sister in law (Shane's sister), who has two children with Autism as well, told me that both of her kids were talking by age five.
And at a party a couple of weeks ago, I had a two year old hand me a sucker and say, "Can you opin dis pwease?" which caught me off guard and snapped my heart in half. How do you explain to a two year why opening a sucker makes you cry, while your own son, who's a full head taller, walks around in little circles and screams at his suckers?
Maybe it's God's plan for Cale to not talk. And maybe, when I finally get to heaven and get my hands around God's neck, he'll explain to me why I had to give this one up to his silly demon. He/she can have the location of my friends, our houses, income, cars, whatever. But Cale talking? That one just seems too important to give up. Or, maybe, it’s too important to not give up. That’s the thing that keeps coming to me over and over and over again - that I need to hand over my attachment to whether or not Cale talks. It’s a terrible attachment. And being free of it might just be heavenly.
The heaven at camp was a shady spot under the pine trees at the edge of a hill. It had a perfect view of the lake. We ate grapes and fresh Flathead cherries, and we got to be with our friends, simply because we gave something to a counselor in a ski mask (amongst other things). Oh, wouldn’t it be nice if it worked that way today?
I guess that heaven for me today is loving people so much that I wish I had the money to fly to Montana to help them move. And it’s loving people who probably barely remember me. I’m going to make it to that reunion someday, and whether those people remember me or not I’m going to give them full blown hugs and kisses and tears. There will be none of the old “too cool to hug” shit. I’m going to find people and I’m going to knock them over. They’re going to see my love with their eyes, and they’re going to know beyond a shadow of a doubt that any “coolness” I may have once had is completely gone :)
My love for people, through the process of letting go of Cale talking, has been a sort of repellent for negative thinking. I’m trying to think of how to explain that. Or maybe I should give you a scene out of a movie.
Oh! I’ve got the perfect one! And after talking about this, I’ll never be in danger of being cool again :) In the fifth Harry Potter movie, at the end, just after Harry’s Godfather (along with his dream of having his own parent someday) dies, the evil wizard penetrates Harry’s mind in an attempt to torture him to death with all of his worst fears and all of his very worst memories. But he sees his friends, and he forces himself to think about them.
You can see the battle inside of his mind, like a slideshow of flashing memories that flip from good memory, to agonizing memory, to good, to agonizing. What’s fascinating to me is the nature of the good memories. They’re such lovely, typical, every day type memories of his friends and family (hugs, laughs, simple hanging out, etc.). The battle finally ends with such a steady stream of love and friendship memories, that it repels the negative thinking and fear, and ultimately forces the evil wizard out of his mind.
I’ve always been intrigued by the character of Harry Potter (who's actually J.K. Rowling), because I’ve never been able to relate to the way he just seems to think naturally. I’ve had to learn how to think that way, in part by reading (and watching) J.K. Rowling’s gorgeous little stories.
It’s such a paradox that having to let things go brings into focus the things that matter. Erma Bombeck says in her book - If I Had My Life To Live Over (written after she found out she was dying from cancer) – “I would have burned the pink candle sculpted like a rose before it melted in storage, I would have invited friends over to dinner even if the carpet was stained, or the sofa faded, I would have cried and laughed less while watching television and more while watching life, I would’ve taken the time to listen to my grandfather ramble about his youth, when my kids kissed me impetuously, I would never have said, “Later… now go get washed up for dinner.” There would have been more, ‘I love you’s, more I’m sorry’s.’ Don’t worry about who doesn’t like you, who has more, or who’s doing what. Instead, let’s cherish the relationships we have with those who do love us.”
Yesterday, I had a friend tell me that every time he sees me he thinks, “There’s the proof.”
Proof? “Proof of what!?” I asked.
“Proof that God exists,” he answered.
My chest almost caved in on itself. I mean, is that the sweetest thing to say or what? I managed to refrain from saying, “Are you crazy!?” Instead I just let myself experience the full course of my very favorite emotion – laughing and crying at the exact same time.
Thanks friends. And I love you.
