All his life has he looked away…
to the future,
to the horizon.
Never his mind on where he was. Hmm?
What he was doing.
A Jedi craves not these things.
We took a drive through the valley of the Special K Ranch on our way home from Billings last Sunday. I don’t know the name of the valley itself. All I know is that it’s Autumn, that bursts of red and yellow and orange line the banks of the Yellowstone River. That sandstone cliffs rise open faced into the sky on the other side. And that the Beartooths stand like a row of rounded, white pyramids along the horizon, across seemingly endless fields of shaggy gold grass.
Nothing lasts forever, does it. Not the leaves. The trees. Not even the mountains or the rivers. It is something that I’ve contended with all my life. I try to hang on. Too tight sometimes. I do it in all sorts of ways. Sometimes I deny it when I see things changing. What? Nothing’s changing! Sometimes I get mad at people when I see things changing. Like change is their fault.
Sometimes I try to use guilt.
I got this one from my grandmother I think. She used to be the grand master of guilting people into doing things her way. No one dared miss thanksgiving dinner for example. Or show up less than famished. Or leave early. It was like watching a conductor orchestrate a symphony.
I don’t like this about myself. I believe guilt to be the single most useless emotion there is. I mean, it serves a primitive function, in that guilt is the thing that tries to get us to stop when we’re doing something wrong. But I also believe it to be the reason we humans don’t want to look at the things about ourselves that keep us from being who we want to be. It actually keeps us from looking, because we don’t want to feel the guilt, which keeps us from growing past ways of being that no longer serve us, and keeps us from getting better.
What if we all just clipped guilt off when it arose? Like a weed? I think we could see ourselves much more clearly if we didn’t have to beat ourselves up in the process. We could just decide to try a new way of being, could just move forward with anticipatory joy.
My point is that things change. And once they do, they can never go back to being the same again. But I don’t want to manipulate people today. I don’t want anyone to ever feel guilty about anything to do with me ever again.
I don’t know much about the Special K Ranch itself. But I’ve often been asked if my son might end up there some day. As we drove by, I saw houses and cattle and wide open spaces. Greenhouses lined the road for awhile - they clearly grow a lot of vegetables. And it is in a beautiful location. Its probably the best place in the state for kids with special needs. People probably wait years and years, and hope beyond hope that an opening becomes available to them.
I only resented it. Best place or not, how could anyone care for my son better than me?
I still have to sing Cale to sleep at night. He wants me to. Just last Wednesday night, as I came in the front door after a meeting, I heard the familiar sound of him jumping out of his bed. His feet hit the floor with a thump, and the pitter patter of his footsteps grew louder as he ran up the hall and rounded the corner into the entryway.
Shane had put him to bed already so that he could start getting things ready for us to go to Billings. But whenever Cale hears me come into the house, even if his eyelids droop with sleep and drool creeps towards his pillow, he jumps out of his bed and runs to the front door.
He stopped in front of me.
Cale has this way of looking up at me. He stills his whole body as he finds my eyes. Then he cocks his head, his own grey eyes shining in the light from the kitchen, and lets his face lift into the biggest smile. Our eyes stay locked as he walks to me. He takes my hand. Then he stands there and watches me like that for a moment, as if I’m the most beautiful person he has ever seen.
Then he starts pulling me toward his bedroom. I’m supposed to lay down with him and sing him his night-night song, even though Shane has already done it. It usually annoys the crap out of me. By this point in the day, I really just want to put my own pajamas on, crawl into my own bed, and maybe watch a little Star Trek before going to sleep. Yet I have to put Cale to bed first. Even though it has already been done.
But it didn’t annoy me on this night. As we walked to his room, my chest swelled with love for him, and with so much gratitude for having him in my life. I tucked him in, laid down beside him, and began to sing. He started giggling.
Cale’s night-night song has begun to bore him a little lately. So I’ve started changing it up a bit. I sing the words with softness and passion, punctuated, every now and then, by a sudden and loud, tongue-made farting sound. I follow this up with a look of shock and an “excuse me.”
Cale laughs so hard. Every time. Full body, belly laughing. I usually laugh too, my stomach cramping with the force of it. My son giggles himself to sleep at night. It’s the best thing. His eyes get heavy and eventually stop opening, but he still smiles, his tongue trying to form farting sounds - pssths - as he drifts off.
How had I always taken this for granted?
Earlier that afternoon we had gotten a call from Cale’s caseworker. Cale’s psychiatrist apparently feels that he has reached the end of what he can do for Cale.
Cale has had a tough year. But when hasn’t he? He’s eleven years old now, yet he still can’t talk. He can mimic a few basic words that he uses every day. And he can use his iPad to get items that he wants or to communicate that he needs a break. But he can’t say what he’s thinking. How he’s feeling. And during this past year, in particular, he has developed a rather serious case of O.C.D.
He gets stuck in one spot, for example, sometimes for an hour at a time, because the boots or the cups or the pillows or whatever he’s collected from around the house, won’t line up just right. It takes him twenty minutes to get out of the bathtub in the morning because he’s got to get his twelve cups lined up just right along the edge of the tub, but then he’s trapped in there because he can’t get out without knocking some over. And it takes him another twenty minutes to get his socks and shoes on in the morning because he has to flip him in the air, over and over again, until they land just right, before he can put them on.
I hide a couple of the cups every now and then, thinking it might be easier on him if he has less to keep track of. But he notices this, and he screams and looks for them - and I mean for three straight hours - until we’re so desperate for peace that we finally give them back to him. And the school bus refused to take him to school for a week, a few weeks back now, because he screamed - while taking his socks and shoes on and off, and on and off, etc. - upsetting all of the other children on the bus on the way to school.
This sort of thing has happened with every item of clothes he has at some point this year. And it would be fine if he just wanted to take stuff on and off all day long. The problem is that he perseverates on it. In other words, the longer he takes stuff on and off, or tries to get stuff lined up, or whatever, the more upset he gets. He gets more and more upset until he finally reaches full blown meltdown mode, complete with self harm and violence towards others.
I started photographing the wounds he leaves on people this year, and showing them to his psychiatrist. Perhaps I shouldn’t have done that.
The problem with it is that he suffers. And others suffer from it too.
Last summer, he woke the whole house up in the middle of the night with his screaming, on a regular basis, as he took clothes on and off and on and off. I eventually got rid of his dresser and put his clothes in bins on a high shelf in his closet. But he’s eleven now and not stupid. He just pushes his bean bag over, or gets a chair, and gets the bins down. And there’s no stopping him. I eventually have to turn away to make dinner, or pay one second of attention to one of my other children, or fall asleep at night. And when I turn back around his clothes are spread like carpeting all over his bedroom floor again.
And when I take all of his clothes and hide them in a bag in the basement, he just gets into everyone else clothes. It is relentless. And unstoppable.
One night last summer, sometime around 3am, as Cale woke the entire house with his screaming one more time, I told Shane that I was going to take all of the clothes in the entire house and burn them in a bon fire in the back yard. I got up, rummaged through a drawer for a couple of lighters, then went into Cale’s bedroom to collect the clothes he was screaming about right then first. But when I got into his bedroom, he was sound asleep in his bed. Screaming.
He was DREAMING about obsessing over his clothes.
I knew then that not even burning all the clothes in the entire house would bring us any peace.
So the psychiatrist has changed, and increased, and changed, and increased, and changed, and increased, the dosages of Cale’s medications nearly every month all year long. We’ve had the hardest time getting Cale back to normal - well… normal for him - this time.
I came to accept, a long time ago, that even though Cale always does well for a little while after a medication change, or some new compression clothing, or whatever, he’ll probably always eventually slip away into some sort of suffering again. Then we’ll change his medication or whatever again, he’ll do well for awhile, but will eventually slip away again. And so forth. We’ve seen it over and over again. I’ve always just figured that this is how it goes with kids with Autism and chronic and persistent developmental disorders.
I guess I never realized that the professionals could reach the end of what they can do. I never thought that, one day, Cale might slip into some sort of suffering that we might not be able to get him back out of. I have feared it, here and there, I admit, but have been told that it is an unfounded fear. So to have the caseworker actually say it…
We’ve got an appointment with Cale’s psychiatrist in a couple of weeks. It’s scheduled to be an hour long meeting, and the psychiatrist doesn’t want Cale at this appointment because he wants us to be able to pay attention. Because, the caseworker said, we’ve all got some difficult things to discuss. It’s time to start talking about long term care.
“Long term care? What does that mean?” I asked.
“Institutionalization or group home placement,” she said.
My heart landed in my stomach. And it’s been there ever since I’m afraid. I can’t see straight. I can’t think straight.
The funny thing is that Cale is doing so well right now. He hasn’t been aggressive at all lately. He’s been calm and happy for the new babysitter. He’s been falling asleep at night giggling and making farting sounds. But I guess he’s on the highest doses of his medications that he take. In fact the psychiatrist is quite nervous about how high the dose of one of them. So the next time Cale slips away into the unrelenting torment of boots refusing to line up just right - picture me rolling my eyes - we won’t be able to up his dose again.
The next time he slips away, it might be for good.
At any point.
We never know.
Of course, this has always been the case. Shane and I have always known not knowing when to be our reality about Cale. And this psychiatrist is only one doctor. There will be more doctors. More ideas. More things that we can try. But one of these times, we might not get our son back.
Shane had just gotten off the phone with his parents when Cale’s caseworker called that afternoon. We’d already made the plan to go to Billings for the weekend, because Shane’s mom was feeling down and wanted to see us and her grandkids.
Because the doctors have come to the last thing that they can do for Shane’s sister too. If it doesn’t work this time, there won’t be any more that they can do.
Shane and I held each other on the couch for the rest of the afternoon and cried. Cale kept sticking his knees into his dad’s tummy, laughing and trying to get Shane to wrestle with him. And the next day, even though it wasn’t quite the weekend yet, we put the kids in the car and went to Billings.
We had an incredible time. We laughed together, cried together, and laughed a whole lot more. We talked to our kids about life and death. About holding on and about letting go. We got to show them what it means to be wide awake in the present moment. To be really sad, yet okay at the same time. To be okay while not okay, if that makes any sense.
I don’t believe the point of life is comfort or pain avoidance. The point of life is to be alive right now. To feel all the grief and all the joy, all the love and all the change. What a gift it has been to be able to love people so much that I want to keep things the same. And to feel the leaves crunch under my feet on the sidewalk. To watch the Autumn colors explode like fireworks in the skies above house-lined streets.
Alden’s friend, Bret, said, Funny, we like the leaves the most as they are dying.