“To me the supreme meaning of Being can consist only in the fact that
it is, not that it is not or is no longer.”
C.G. Jung
Just before we left our counseling appointment, the
counselor said to us, “Gosh, it’s really too bad that your son can’t get the
therapy he needs here, and that you guys don’t have respite care. You really need the respite. Have you considered moving back to Arizona?”Shane answered, “We’re going to give it a year here and see what happens. After that, I don’t know. Moving here was a big change for the kids. We’d hate to change everything on them again.”
“Well,” she said, “You two need a support structure in place, an entire support structure underneath you. You need your whole community to come together and help you. You need your community to rally.”
I thought this was an interesting choice of words actually, because one thing that our community does, and does incredibly well, is rally. I’d go into the details, but it would only be bragging about a bunch of fantastic people who probably don’t want to be bragged about in a blog. So I won’t. But I will give you a little example.
One time, when Shane was willing to watch the kids for me so that I could get out for an afternoon, I went to a barbeque amongst my friends and sat down next to a woman that I didn’t yet know very well. “Hi, how are you?” I asked.
She squirmed in her chair and said, “You know, I was really scared to come here today. I was afraid that I wouldn’t know anybody very well, but it turns out that it doesn’t matter that much how well you know people. I was incredibly uncomfortable just before I got here. Isn’t that silly? But now I’m really glad that I’m here.”
Refreshing, isn’t it? Tell me how you’re REALLY doing. My point is that small talk is practically non-existent in my little world. Yet I’m afraid that I’ve recently been guilty of saying, “I’m fine. I’m fine. Just fine. How are you?”
Boy is that an effective way to let my own mind devour me completely. Unfortunately, I know how to look good. I know how to put on nice clothes and a smile big and tell you want you want to hear. And lately, when someone has asked how I’m doing, I’ve said, “Fine. Just fine. So glad to be home again.”
It didn’t take long for somebody to call me on it.
“Are you just saying that?”
Pause.
“Yes. Yes, I am,” I answered.
I spent the next fifteen minutes vomiting chunks of everything that’s been going on (the state stuff, the money problems, the worrying about my son) onto this guy, and he didn’t mind a bit. But finally, he looked at me and said, “You know that God is the answer, right?”
“I know, I know, I know,” I replied.
“No, really,” he said.
“I know,” I said, trying to sound just a little bit more sincere.
“Hmmm,” he said, “Can I do something with you right now? Can I pray for you?”
He took my hands (I actually looked around to see if his wife anywhere wondering why I was holding hands with her husband in the parking lot) and he prayed for help, guidance, and direction for me in a moment when I couldn’t have done it for myself.
After that, Shane and I asked this guy if he would come and finish out a room in our basement for us, as we were never going to be able to get it done ourselves. And this guy was in our basement every day for the next few weeks, getting a taste of the exact nature and consistency of Cale’s behavior (the non-stop screaming, the non-stop sounds of things hitting the floor, the daily flooding of the bathroom, a house that always looks like it’s been hit with a tornado, and two other children that hide in their room so as to escape all the chaos). And one day, he found me upstairs crying. I hadn’t showered in days. Again. And I found out later that evening that he had just been downstairs telling Shane that we’re his heroes because he doesn’t know how we go through what we go through with Cale. Whoops. What a hero to have, huh?
We proceeded to have a conversation about self-discipline. He said something about always thinking that he can discipline himself into better living, but that the word that always sticks out to him is “self.” We spent a few minutes correlating “self” and ego, and then began talking about how using our own egos to discipline ourselves with is a bit like using the same hammer that gave you a headache, to relieve the headache with – you can’t fix the problem with the problem (or by even focusing on the problem). You can’t make things go your way by being attached to them going your way, because it will always fail eventually (if it even works at all in the first place). Then he talked about letting God discipline him instead. He said that our relationship with God is the only the thing, the ONLY thing, that really matters. And when I’m focused on that, everything else seems to fall into place.
Now, this doesn’t mean that we don’t look at our lives and figure out what’s working and what’s not. In the case of this therapy that I might be getting, for example, for what the counselor is calling “clinical depression,” I’ll be taking an inventory of sorts, of all of my experiences regarding my children. And once I’m through the pain of it (taking inventory is painful so I don’t draw it out for too long), I’ll have an objective list of my thoughts and ideas about things. Then I’ll be able to discard the ideas that are no longer working for me - I like to put them on a piece of paper and give them to God (burn them).
Focusing on the problem for long enough to take an inventory is appropriate I think. But taking a good, honest look at the problem is only a beginning. There must then be a solution to the problem - a way to live on a different basis (it’s different because it’s no longer based on old ideas that no longer work). I have to acquire some new, good ideas. And in this case, this guy was asking me to let the God idea be my new (well, not so new actually, but refreshed) idea. He was asking me to step onto the shore of faith, and begin to live again as though there were a God in my life.
When I get really honest about it, I want my son to learn how to talk so that he’ll stop tantruming so that my life will be easier. And while this isn’t an entirely unjustified desire (because his tantruming sucks, frankly, for him and everybody else), it’s still motivated by “self.”
Motives based on “self,” no matter how well intentioned, never bring about the desired results. It’s like it’s one of those funny laws of the universe or something. And until I actually change my motive - Dear God – what do you want to have happen? Give me the knowledge of your will for me (and just me, I don’t get to have the knowledge of God’s will for anybody else) and the power to carry that out – I’ll never have any peace.
Finally, he asked me if we could pray again, only this time he had me say the words.
After this, it was almost like the top came off. People started coming out of the woodwork all over the place asking what they could do to help us. Things like, “So, I was driving down the road yesterday and I couldn’t get you out of my head. I’d really like to do something for you. What can I do?”
And do you know what to do when someone asks you that, that specifically and that directly? You think of something. Anything. You also see what you can do to help somebody else.
I had an Autism parent over for coffee last week. I cleaned up all of the evidence that Cale lives in our house, so that it didn’t look like a depressed person lives here. We planted non-depressing flowers in the front yard. I put pots of non-depressing flowers on the front porch. I took a non-depressing shower before this person came. And I made a non-depressing cups of coffee for each of us to discuss our children over. It was the least depressed I’d felt in weeks. It’s amazing how that works.
“When I got your message,” I said, “you said something like, “One of our shortcomings as parents is… “ And the part that actually bothers me is that you think you could possibly have shortcomings as parents.”
This person said, “So you don’t think I should beat myself up too badly then, huh?”
“No, you shouldn’t,” I said, “In fact, I think that you should take the entire idea (that you could’ve somehow failed, or be failing, as a parent) out into the woods and shoot it dead,” only I can’t remember if I actually said that last part out loud or if I only thought it really hard.
Good advice, huh? And it seems as though I should be practicing what I preach. The guilt is definitely going onto my list of ideas that no longer work for me.
The people here have been really helpful. I could go on and on, but again it would be bragging. But one thing that’s brought a tremendous amount of relief is that we have a couple of financial experts (ha ha!) that are going to help us with our finances. They refuse to make actual decisions about what help Cale will be getting and what he won’t be (an example – do we stop taking Cale to the psychiatrist for his ADHD, which costs us $360 per month, not including medication, until our high deductable is met for the year, and use that money to get him a little bit of speech therapy each month instead?) as these kinds of decisions are brutal and can only really made by us. But they will help us to set a budget for our family, and help us to allot an appropriate amount of money to Cale (because Cale is only one of five people in this family). Then we’ll be able to take the appropriately allotted amount of money and get whatever we can for him with it.
Yes, he’ll still have a great number of needs that won’t be getting met. But I won’t have to feel so guilty and unsure all the time about every last penny we ever have NOT going into Cale alone. It’s an incredible relief not to have to make these kinds of decisions by ourselves, because frankly, Shane and I are too emotionally attached to the situation to be able to make objective decisions about it.
The room is the basement is nearly complete now, thanks to our friend. This will give Alden and Isabel a quiet place to play while Cale is screaming. And people have been babysitting for us, and have taken Alden and Isabel out to do things and get some attention that certainly wouldn’t have gotten at home. And I’m so grateful for these things that I can hardly keep it in.
Shane and I were talking about all this help recently, and I asked him why he thinks it is that I start crying every time I think about someone helping us. I mean, it’s a happy thing right? So why the tears? And he said to me, “Because when you’re asking for a lot of help, it means that you need a lot of help. And that’s kind of hard to swallow because it’s very, very humbling. But it’s also okay.”
I was at coffee with my spiritual advisor of sorts last week, telling her that I don’t know how to make peace with the future institutionalization thing. And she told me about a friend of hers who ended up institutionalized when she reached adulthood. She told me that this person’s parents dreaded this for the entire time she was growing up, but that when it finally happened, this person actually thrived in the place.
Then she said to me, “You know, maybe Cale is beyond human aide. Maybe no human power will be able to relieve his Autism.”
“What?” I asked, “What did you say?”
“I said that maybe no human power will be able to relieve Cale’s Autism,” she said, echoing something that I thought I had heard somewhere before, “I mean, I know that you’re feeling guilty about giving up all the therapy so that you could move here, but didn’t Cale get back to back therapy sessions all day every day for over two years straight in Arizona?”
“Yes,” I remembered.
“And there were no results, right?” she asked.
“Nothing that lasted,” I answered.
“So maybe Cale is beyond human aide," she continued, "Maybe nothing can be done for him. Maybe you’re not here for Cale at all. Maybe you’re here for the rest of you to get healed up for awhile."
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