“But at last I could not help being gripped by the problem, in all its urgency and difficulty, and I found myself compelled to give an answer.”
C.G. Jung
I think that my nephew spies on my son at school. This is because every time I’ve gone to the
school this year (for a holiday program, or a meeting, or to give Cale his
medication because I’d forgotten to give it to him earlier that morning, or to
pick Cale up for a doctor’s appointment), I have found my nephew in the hallway
outside of Cale’s classroom.
He’s sneaky about it too. I mean, I don’t usually see or hear him at first. But then, as if out of thin air, he’s suddenly standing right beside me. “Hi Aunt Jessie,” he says, looking directly into my eyes until I begin tearing up, and then looking away again.
This sweet nephew of mine has Autism as well. I remember watching his behavior when he was little and believing him to be the actual definition of “a parent’s worst nightmare” – no eye contact, no snuggling, hiding under the table when people came over, fits of rage that made the Hulk’s transformation looks like small beans, and hyperactivity that could rival the speed of even world’s fastest race cars.
This particular combination made for huge and continuous battles to accomplish even the smallest of daily tasks for good number of years. It also made for a constantly trashed house, regular calls to the police department because he had escaped again, and a mother whose exhaustion eventually settled into her so deeply that she finally just stopped. She got to the point where she would sit down at family barbeques and refuse to get up for any reason at all. And when a family member would come to her and say, “He’s running away again,” or “he’s destroying something again,” or “he’s having a fight with so and so,” she would respond with, “Well, feel free to try and stop him.” Then she would lean back in her chair, put her feet up, and savor her salad like it was the last bit of food on the face of the entire planet.
This nephew’s early prognosis wasn’t good. He was just like Cale is now, the only difference being that Cale has always made good eye contact. Not only did the doctors say that this nephew would probably never speak functionally, they also said that he would probably never even be toilet trained. But today, not only is he toilet trained, he’s also in a regular education classroom at school (with breaks, obviously, so that he can wander the halls and keep an eye on my son). And he speaks so functionally that he can make direct eye contact with an Aunt who begins to cry nearly every time she sees him.
I must confess that having a child like my nephew was the worst possible thing I could imagine for a great number of years. But now my hope is that Cale will become just like him, instead of becoming like my mother in law’s nephew with Autism – the one who’s in his twenties now and is institutionalized because he’s still non-verbal. And do you know what the difference between these two nephews is? The one who keeps an eye on my son got therapy (years and years and years of therapy). The other didn’t.
A few weeks ago, I went in for a treatment with our healer because I wasn’t feeling well. And, after working on me for a few minutes, she told me that I’m going to have a heart attack. And not within a matter of years or months, but within a matter of weeks. “But I choke down vegetables and shit like that. And I work out every day. And I don’t smoke anymore. Well… okay… not very much anyway,” I told her.
“It’s not that,” she said, “It’s stress. I think that it must be the stress of having two geniuses for children.”
“Oh, here we go again,” I thought.
But then, a couple of minutes later, she amended it to, “It’s guilt! Oh wow honey, it’s guilt. What could you possibly be feeling so guilty about? You know it’s not your fault that your children are the way that they are, right?”
A thirteen year old actually sprung out of the core of being and nearly said, “Um, DUH,” but I quickly stuffed her back down where she belongs so that I could use the words of an adult instead, “Yes, I do know that, thank you.”
“Well,” she replied, “you need three vitamin e tablets per day. And you’ve got to stop doing whatever it is that you’re doing to yourself.”
“Guilt,” I said to myself later as I was popping vitamin e tablets, “That’s the most ridiculous thing I’ve ever heard in my entire life. I mean, just because I’ve given up everything that my children had going for them – all the therapy that they had in Arizona – so that we could move back to Montana, doesn’t mean that I feel guilty.”
“Just because I’ve given up everything that Cale needs in order to learn how to talk, everything that he needs in order to have even the slightest, tiniest chance at becoming a functioning, and possibly even taxpaying, human being some day, doesn’t mean that I feel guilty. Just because he’s probably going to end up institutionalized (and maybe in the not so distant future) instead of having a shot at becoming like his cousin, or maybe even like Temple Grandin, just because his mother so selfishly insisted on living near her friends and family here in Montana, doesn’t mean that I feel guilty. And just because my other two children don’t get to have a mother because I’m so damn busy dealing with Cale all the time, doesn’t mean that I feel guilty. I mean, really? What could I possibly have to feel guilty about?”
An opening came up for a Medicaid waiver here about a month and a half ago. It’s called a Medicaid waiver because it’s Medicaid that’s given to children with disabilities based on the disabilities, not on the family’s income. So they “waive” the low income requirement, so to speak (actually, I think that they base it on the income of the child alone instead of on the income of the family, or something like that).
Wait, let me explain this first - When we decided to move here, I thought that there were fifty Medicaid waivers available in the state of Montana to children with Autism. What that meant was that fifty children with Autism, out of the entire state, have Medicaid to cover Autism therapies, and that the rest of the children with Autism in this state whose family’s aren’t yet dirt poor (who either don’t have medical insurance or whose insurance companies don’t cover Autism therapies) are simply being thrown to the wolves, metaphorically speaking.
I know that sounds a bit like something out of the stone ages, but I thought that it was the reality here in Montana. And we were (and still are) entirely dependent on Cale receiving one of these Medicaid waivers (and Isabel too, even though she’ll never get one because her need isn’t as severe) since our medical insurance doesn’t cover any therapies for Autism. Cale (let alone Isabel) won’t be getting therapy until he’s selected for one of these waivers because we can’t afford the cost of the therapies out of pocket (which for Cale comes in at around $4,000 per month for the basics, and for Isabel comes in at around $2,400 per month for the basics – that’s $6,400 per month (just for the basics) that we’re expected to pay for therapy, out of pocket, if we want to feel like good parents – and we don’t have anywhere near that kind of money).
When we applied for the Medicaid waivers for Isabel and Cale, Cale went straight to the top of the waiting list out of all of the children with Autism. This is because placement on the waiting list is determined by the severity of disabilities. And, compared to other children with Autism, Cale is severe (he’s almost six years old now and is still nonverbal). Therefore, I figured that even though it would be a wait (they informed me that they wait for people to die around here for these slots to open up), he’d surely be selected eventually.
When the opening came up, it was immediately filled by somebody else. So we called the state and asked why. The reason was because a child with Cerebral Palsy, who had serious and immediate medical needs, filled the slot. “So, let me see if I’ve got this straight,” I exclaimed, “It’s NOT that there are fifty waivers for children WITH AUTISM here? It’s that there are fifty waivers TOTAL, for all of the children with disabilities, here? Do you mean to tell me that there are children with serious and immediate medical needs, along with children with Autism, being thrown to the wolves around here? And, yes. That’s actually what’s happening. This isn’t the stone ages. This state isn’t anywhere near as advanced as they were during the stone ages.
Cale has a lot of medical needs, yes. But they aren’t, and probably never will be, considered serious and immediate, especially when compared to children whose medical needs actually are serious and immediate. The reality is that Cale is probably never going to be selected for a Medicaid waiver here in Montana. So, in spite of what all of the research says about how important it is for children with Autism to get therapy while they’re still young, and in spite of all of our family experience, Cale isn’t going to be getting therapy here. And he’ll eventually be institutionalized for the rest of his life as a direct result, an unimaginable cost to taxpayers compared to what it would cost if they would only invest in him now. But, whatever. It’ll be the taxpayers’ problem. I’ll apparently be dead from a heart attack.
This, along with the long, slow realization that my healer really isn’t helping Cale in any kind of significant way, sent me into the strangest bout of sadness. The weight of it has been truly unbelievable. I mean, I’m a person who has a lot of tools for keeping the blues away. But that’s the problem with this type of thing, isn’t it? You just don’t care enough to actually use the tools.
I’ve had to come to accept that not only is there not going to be any therapy, but that no doctor or healer or anything or anyone is ever going to be able to help Cale (I’ve officially tried everything that I’ve ever been able to think of). And future institutionalization is something that I just don’t know how to make peace with. And it isn’t going to change. No matter what I do. It isn’t going to change. It’s going to stay like this. And, for a little while anyway, I thought that a heart attack might not be such a bad thing. In fact, I even quit working out and doubled my cigarette intake so as to expedite the process.
Did you know that the orphans in Uganda are the lucky ones because the children there get more care in the orphanages than they do in their own homes? We have a friend who just came back from there. I could never go to Uganda. I’d come home with a baby if I did and, with my luck, it would end up having Autism too. I guess my point is that if you ever find yourself feeling sorry for your child that the state in which he lives couldn’t possibly care less about him or his future, you don’t have to look very hard in order to find more intense suffering.
This is ordinarily how I derail self pity - I find people who have real problems. But somehow, that just hasn’t been good enough this time. Somehow, I’ve been hurting like I did when I first found out about Cale’s Autism, and I didn’t think that it was possible to ever feel like that again. Well, not only have I come to know that it’s possible, but I’ve also come to know the full weight of not being able to get myself out.
At the rather insistent urging of both of our spiritual advisors of sorts, Shane made us an appointment with a counselor (and, come to find out, this is the one thing that Shane’s insurance company is good for – it won’t provide the therapies that a child needs in order to avoid future institutionalization, but it’ll provide all the counseling the parents need in order to get through the pain of it). And I thought that this counselor was going to be your average, run of the mill marriage counselor, but she turned out to be a master’s level psychotherapist instead. “Uh-oh,” I thought, as I was looking over her credentials on the way to our appointment.
You see, I have a B.A. in psychology, which basically means that I know just enough to be dangerous. And I’ve often thought that I might be developing symptoms of depression from all of this Autism stuff, but I’ve never really wanted to land in front of a psychotherapist and have it confirmed. Sure enough, however, Shane and I went in for a session of marriage counseling, and I came out with Post Traumatic Stress and symptoms of ongoing grief – the magic combination for a real, live chemical change in the brain.
The words Clinical Depression nearly hit me in the head as they flew out of her mouth. And I didn’t even tell her about the really traumatic stuff – like all the times that Isabel threw herself onto the ground in parking lots and started banging her head onto the pavement in front of or behind moving vehicles, or about how Cale still escapes from the house, or struggles free from my grasp (he’s getting so strong), and runs out into the street in front of moving vehicles, or about the tantruming - the sometimes truly unbelievable and constant tantruming (yea, there’s no “Post” in the Post Traumatic Stress of these last two because these are things that still happen all the time). I also didn’t tell her about the fact that these things are never going to change. I mean, call it guilt, or trauma, or grief, or depression, or whatever you want to. The point is that my sweet little boy is never going to get better.
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