Already Saved?

  • Posted on March 31, 2014 at 10:00 AM

As an inactive Latter-Day Saint, there are times when the missionaries come around for a series of visits intended in reconnecting with me and my family and to encourage us to be more active in the church. Right now, there are two lovely ladies who are fulfilling this role. They are bright, cheerful, and enthusiastic. I enjoy my time with them and the extra spiritual focus in these difficult times. I’ve shared my passion for changing the world to make it a better place for my children and for the many others who are like them throughout the world. They are encouraging and supportive.

But when it comes to my children, there is a recurring statement I find rather misguided and disturbing. You see, in our church, being “saved” is about being “accountable.” If you haven’t reached the “age of accountability” by the time you die, then you are already saved by Christ’s grace. Nothing is really required on your part. This is in contrast with the doctrine of many other churches, including the Catholic church, in which babies are baptized shortly after birth (and definitely before death) to give them the benefit of Christ’s grace. In the case of my children, who have disabilities that impact their ability to be held “accountable,” the same assumption applies—they’re already saved.

Now, from the perspective of many Latter-Day Saints, our time on earth is a trial period. What we do here impacts our lives for eternity. We must prove our commitment to God, even in relative ignorance, through the lives we live. By assuming that my children are already saved, they are assuming my children aren’t here to be tried. The natural extension of which is that my children are part of my trial. This, in turn, reduces them from the role of willful actors on the world stage to mere objects to be acted upon.

Before a whirlwind of criticism rains on the Church of Jesus Christ of Latter-Day Saints, I’d like to point out that they are not the only Christian group that holds similar beliefs and that I’ve yet to see any of these Christian groups, including members of my own church, follow the logic of this particular belief. In fact, this belief is usually expressed as, “God loves them so much He made sure they’ll make it back home to Him.”

It’s a nice sentiment and I understand why a church that is so concerned about accountability and choice, and the importance of communicating an understanding of God, would be satisfied with a doctrine which recognized those who aren’t able to meet the church’s standards in traditionally recognized ways by covering them with a blanket of grace. In short, they mean well.

Now, I believe that we are all sons and daughters of God. I believe we lived with our Heavenly Father in a pre-mortal, spiritual existence. I believe we were given a choice to come down here and that, when we made that choice, we knew what kind of life we would be given and the choices we would face, at least in part. I believe our conscious knowledge of this is hidden by a “veil,” because if we knew now what we knew then it wouldn’t be much of a test. I believe we will all die and return to our Heavenly Father in some form or other, though not all of us will be able to stay. I believe we will all be held accountable for who we choose to be here on earth. All of us, within the scope of our choices, will be held accountable.

For me, the difference is this: God is not limited. Sure, despite my best efforts, I cannot communicate the teachings of the Church to Alex and determine whether or not he wants to participate in the Church. Nor can I do so for Ben, at least not yet. Willy learned the basic teachings of the Church and chose to be baptized. He, however, does not choose to attend church. Mark and I have respected each of the choices Willy has made. Mark and I respect the fact that we cannot successfully communicate these choices to Alex or Ben. The reason is simple: Mark and I are limited and so are Alex and Ben. God is not limited.

I believe that God has a relationship with each of my children. They may not always be conscious of this relationship; then again, I’m not always conscious of my relationship with God either. They may not always be able to communicate about this relationship; then again, I’m not always able to communicate about my relationship with God either. But I know it’s there. I know it’s there and I know that God will be able to hold Alex and Ben accountable, within their own limits, just as He will be able to hold me accountable within mine.

The Church may never know what choices Alex and Ben make. When it comes to their faith (or lack thereof), I may never really know what choices they make. But they do have a choice and God knows what choices they make and what they mean. Because God does not operate with the same limits we do. He understands us, even when we don’t have the words or when the words we use don’t make sense, because he is not limited by our language. His communication is perfect, just as He is perfect.

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Learning to Lie

  • Posted on March 28, 2014 at 10:00 AM

Lying is a learned behavior. Unfortunately, kids learn this pretty young. They learn it from their parents, from other kids, and from the entertainment industry. Even lessons about not lying can, in fact, teach people to lie.

For many years, Willy would tell us the truth, whatever it was, and we would reward this behavior. Brandon learned to lie much earlier, but he also learned that telling a lie and getting caught was cause for added punishment. Telling the truth, even if it was a “bad” truth, meant leniency; sometimes his punishment was limited to a lecture. Still, Brandon would try to lie when he thought he could get away with it. I’m sure some of the time it worked, but not always.

Now, Willy’s learned to lie. He has not, however, learned to discern when he can and cannot “get away with it” very well. He threw up on Sunday, but told Mark that he hadn’t. He got caught because he didn’t clean the vomit from the toilet seat.

First, we talked about why he lied. Willy is disappointed because the school year has been extended due to too many snow days this winter. He didn’t want to get another day added on to the end of his school year, so he wasn’t willing to miss a day of class because he was sick. So, he lied.

We explained the faultiness of his logic—missing a day due to illness does not add another day of school on at the end of the school year; only snow days can do that—and then we talked about lying. Willy still isn’t comfortable lying, so it was an easy lecture.

But it just goes to show that learning to lie is part of our culture. Even when the internal inclination is to tell the truth, we try to protect our interests by lying. We spend our childhood learning this skill. If we’re lucky, we will spend our adulthood learning to unlearn it.

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Smelling Sick

  • Posted on March 26, 2014 at 10:00 AM

Parenting brings about some pretty strange super powers. One of mine is the ability to smell when my children are getting sick. I don’t know what it is, maybe a pheromone or something, but when the boys are coming down with something they start producing this faint odor. It’s not unpleasant and it’s not strong, but it certainly catches my attention.

I don’t make my decisions about keeping the boys home from school due to illness based on this smell alone, but the smell does give me a warning to pay closer attention to the signs that the boys might be getting sick. Since the boys don’t necessarily tell us when they’re sick, this can make the difference between keeping the boys home in comfort and getting a call to come pick them up from school.

Alex was grumpy this weekend. Several times I saw him get up, start to do something, and then seem to give up or forget and go back to what he was doing before, which required less energy. I do that all the time, usually because I have too much on a mind disengaged by too little sleep. Alex sleeps pretty well and usually is more focused, in his own way, than that. It was a sign that he was extra tired. He also lashed out more readily at others, especially Ben. He cuddled more and I found him laying down several times. I thought it was odd, but I wasn’t too worried.

Sunday evening, after Mark told me that Willy had thrown up (and then lied about it); then, I smelled the smell on Alex. Together with the smell, I had enough information from the behavioral change to consider him sick despite the lack of fever or vomiting. They both stayed home Monday. Alex got some extra rest and an extra quiet (Ben-free) day and seemed to recuperate by the end of the day. Willy recuperated a bit faster, but still needed the extra rest.

Now, they’re both back at school. I just hope Ben doesn’t get it, too!

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Samuel Rising

  • Posted on March 25, 2014 at 10:51 AM

I’ve just finished watching Roswell for the first time. The episode “Samuel Rising” stood out to me as a testament of the integrity of the show. Roswell is the story of three human/alien hybrids who are trying to live their teenage human lives while finding out why they were created and sent to earth by their alien parents; it is also an exploration of what it really means to be human. These human/alien hybrids have diverse gifts and one of Max’s gifts is the ability to heal. An on-going conflict in the show is how Max should use his gifts: merely to hide the truth of his identity or to help others in need?

Earlier in the series, Max conceived a son who taken from earth before birth and is now trying to contact him. When Samuel, a child with autism, comes up to him in a restaurant and says, “Daddy,” Max believes his son is using Samuel as a conduit to contact him. After a failed attempt to achieve mutual communication, Max’s human girlfriend suggests that maybe Samuel talked to Max for Samuel’s sake, not for Max’s.

In an effort to help Samuel for his own sake, Max sneaks into Samuel’s house late at night and tries to heal him. Afterwards, he expects Samuel to talk to him, but he doesn’t. Frustrated, Max returns to his girlfriend at a loss. This is what happens next:

She says, “So, what happened?”

“It didn’t work,” he says. “I couldn’t heal him.”

“Well, maybe he didn’t need to be healed. You heal people who are sick or hurt, but Samuel isn’t sick or hurt. He’s just different.”

After some thought, Max says, “Maybe I was trying to heal the wrong person.”

The next thing Max does is have his sister, who can walk in people’s dreams, try to bring his parents into it Samuel’s dream. Samuel’s dream proves he does know what Christmas despite his father’s earlier assertion that he didn’t (represented as a tree, train, presents, and love). When the dream-version of his parents arrive in his dream (versus the “real” ones watching) he says, “I love you, Mommy. I love you, Daddy,” just as he would do if he could use words outside his own head.

When they wake, Samuel’s daddy calls his (ex-)wife and asks to come over. Samuel gets to live a part of his dream and he gets his daddy back.

I’ve watched many television shows that include an episode on autism or another disability. Most are disappointments. A few come close to getting it right. I’m glad to find one that really, truly gets it right.

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What’s Your Stage?

  • Posted on March 21, 2014 at 10:00 AM

Lawrence Kohlberg researched cognitive moral development across fifty or so countries in an attempt to discern the different ways people think about ethical issues. Based on this research, Kohlberg created a six-stage model of human moral development:

  1. Stage 1: Obedience and punishments are the main determinants of behavior.
  2. Stage 2: Satisfying one’s own needs regardless of the cost are the main determinants of behavior.
  3. Stage 3: Gaining social approval are the main determinants of behavior.
  4. Stage 4: Following established rules and supporting established authority are the main determinants of behavior.
  5. Stage 5: Principled thinking that transcends rules, authority figures, punishment, rewards, and social approval to seek after the welfare of your society are the main determinants of behavior.
  6. Stage 6: Principled thinking that transcends rules, authority figures, punishment, rewards, and social approval to seek after the welfare of all people are the main determinants of behavior.

I wanted to know if there was a test to assess your cognitive moral development. I found one, but I found that most of their choices were inconsistent with my reasoning, even if they reflected a portion of the action I would take. For example, one scenario involved stealing or not stealing a life-saving medicine; using creative problem-solving to create an ethical alternative means of accessing the medicine wasn’t an option. If you want to take the test, you do so at your own risk. Personally, I don’t put much stock in it.

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Ethical Autonomy

  • Posted on March 19, 2014 at 10:00 AM

It’s spring break from my classes, so I wanted to use this time to share a few of the things I’ve learned in my ethics class last week. In administrative ethics, the dual focus is organizational ethics and individual ethics. Ethical autonomy is where this dual focus collides.

Apparently, there are a variety of theories that try to explain how organizations erode the individual ethic of their members. We see the results of this erosion in our government sectors, our business sectors, our nonprofit sectors, and even in our advocacy groups. I find the theories, as I understand them, of Alberto Guerreiro Ramos most compelling, because of all the theories covered in Terry L. Cooper’s The Responsible Administrator it is the only one that seems to see this tendency in the larger culture, instead of restricting it to within the organizational environment.

Essentially, human beings become compartmentalized in order to fit into society by placing themselves in one of society’s defining boxes. In order to combat this tendency, we need to emphasize our whole personhood and hold onto that, which will allow us to make individual ethical judgments, even when they go against the assertions of the organization(s) we participate in. In more loaded words, we have to remember that we are individual people—whole people—in order to keep ourselves from unwittingly selling our souls to the organizations we choose to work for/with.

Last week’s studies made me think of some of my previous employment experiences and the effort trainers and managers made to bring me into the fold. Cooper, citing Milgram (1974), describes this process as the agentic shift, which involves diminishing one’s conscience in order to conform to an organization’s hierarchal structure. I realized, quite readily, that I was never any good at this. I may “buy in” to an organization’s message, but as soon as it involves compromising my own ethical standards I disengage, reexamine, and reassert my sense of self.

I don’t know how extensive this is, but I’ve found a similar tendency among many people on the autism spectrum, and it’s one of the autistic “traits” I tend to admire most. Perhaps part of the social “deficiencies” associated with autism is an inability or an unwillingness to submit oneself to a collective conscience or ethic. Being neither a psychologist nor a sociologist, I wouldn’t know how to test this theory and I’m not even sure I would know what to look for to see if someone else had already done so. What I do know, however, is that, from my point of view, if this is true of all or part of people on the spectrum, then I must say it’s a good thing and may even be an adaptive measure to correct some of the corruption rampant in our societies.

I am conscious of my individual responsibility: It doesn’t matter who tells me to do something, if I think it’s wrong and I were to do it, then I know I would be responsible for having done it. So, I don’t do it. Apparently, this consciousness is unusual. Ethics researchers are actually investing resources in discovering how to make people conscious of their own culpability. They talk about building an ethic of awareness, which means that people need to be aware of ethical situations in order to choose ethical action. They also talk about limiting organizational loyalty, meaning they’re looking into ways to prevent people from submitting themselves completely to their organization(s).

These are things I do naturally. I haven’t always had the courage to stand up for what I knew was right, nor have I always known how to go about it, but I’ve always felt it. What does it mean for our societies that ethical autonomy is abnormal? I think the answer goes far to explain the rampant corruption in our politics, our governance, our businesses, and our culture. Perhaps the real question is this: Why, in such a society, would anyone want to be normal?

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Nothing About Us Without Us: A Presentation

  • Posted on March 17, 2014 at 9:39 AM

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Grooming Civility

  • Posted on March 14, 2014 at 10:00 AM

Self-help and life skills are all a part of raising a civilized child. There’s a sense of conforming to the norm, because it is normal for a child of a specific age to be able to dress, feed, and wash up by himself, as well as performing regular hygiene and grooming tasks, like brushing hair and teeth. In addition, when raising a child with autism, obtaining these skills is important for independence and quality of life purposes. So, yes, we are conforming to society’s expectations in a way that the child may not initially appreciate.

The problem comes into play when we expect or even demand that these skills be developed in the same way and/or on the same timetable as more typical peers. Such expectations and demands only lead to mutual disappointment and frustration. I’ve seen parents who have, at least for the most part, maintained the same timetable by make significant adjustments to the way the skills are developed. I’ve also seen parents sacrifice the timetable by waiting for the child to develop these skills at his or her own pace. I’ve tried both routes with mixed success, resulting in a rather mixed approach.

In the end, the question is not whether we need to conform to society in these regards; the question is how much we are willing to conform to society. Where we draw the line, as parents, matters. It impacts how we perceive our children and how our children are perceived by others. More importantly, it impacts how our children perceive themselves. It impacts the levels of chaos and order that exist within our homes. It impacts the comfort and adaptability of our children. It impacts their quality of life with regards to how expectations and methodologies relate to their frustration, their aspirations, their self-direction, and their self-authority.

In the end, our children will become adults. In the end, our children will find ways to communicate their own ideas, their own beliefs, and their own experiences. As we judge where our own parents drew their lines in the sand, so too will we be judged by our children. If you doubt that for even a moment, take a look around at the dialogues of autistics adults that pervade the blogosphere.

So, whatever struggles you face today, I caution my fellow parents to keep this thought in the back of your mind: What do you want your children to say about you when they can? Don’t forget that respect others’ personhood is part of civility, too. The way you teach your children to do that is to do unto them what you would have them do unto others. Autism doesn’t change that.

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Dressing Oneself

  • Posted on March 12, 2014 at 10:00 AM

Once the boys became toddlers, getting them dressed became a wrestling match. Pin and pull. One pant leg on. Pin and pull. Second pant leg on. If I was lucky, the first pant leg had stayed on. If not, then the child had pushed it off again in the struggle. Socks were the worst, however, with the occasional kick to the face. The biggest trouble with shirts was the hassle of getting the front of the shirt aligned with the front of the child. Then, the biggest difficulty was ensuring the child stayed dressed. Of all three, Ben was the most resistant to clothing and he’s now the only holdout. Ben will wear clothes out of the house, even at school now, but won’t wear them (for long) at home.

I once despaired of teaching the boys to dress themselves in a reasonably timely fashion. They’ve been able to do it for years. It’s like undressing, simply in reverse. But it could literally take them hours to dress themselves. Now, Willy does it in a flash. Alex will only dawdle through it for about ten minutes. Ben will get dressed pretty quickly—if he’s willing to dress himself at all, which is still hit or miss.

So, once again, it gets better. Developing skills helps, of course, but mostly it’s a matter of time. They come around, more or less. Then, of course, there’s Ben who will—as soon as he gets home—strip off his coat, his boots, his snowpants, his socks, his pants, his shirt, and throw them in a pile that is more or less “away.” The only deviation to this routine is the outer garments he’s wearing. Luckily, the pull-up usually stays on.

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The Cutting of Hair

  • Posted on March 10, 2014 at 10:00 AM

When we first learned about autism and sensory integration disorder, we learned (among many other things) why haircuts seemed so traumatic for the boys. Simply put, they seemed traumatic because they were traumatic.

I remember how the boys would writhe under the scissors or the buzzer (an electric hair clipper). It used to be that I would sit down and hold one of the boys on my lap, while my mom cut their hair as quickly as possible. We’d all get covered in hair, the child would cry, and it would end with us in a breathless, exhausted tumble of remonstration, remorse, and reconciliation.

Once we understood that, yes, they acted like haircuts hurt because, to them, it did! When we understood the impact of sensory integration disorder and ineffective communication skills, we changed how we did things. Mainly, we performed haircuts in short bursts and separated each burst of haircutting with intense sensory regulation strategies. The result was a little less trauma, but otherwise the same. As the boys grew older and stronger, it seemed—at first—that the only thing that really changed is that Mark was the one to get covered in hair instead of me.

Then, something miraculous happened. It started with Willy. You see, he started becoming adept at self-regulation. He gained more self-control. So, while he still put off haircuts as long as possible and continues to dislike haircuts, he became able to endure them to the point that he could sit for them himself, he could tell us when he needed a break, he could regain his own self-control, and could tell us when he was ready to come back.

Alex’s journey is this regard was a little less straightforward and isn’t as progressed, but he can also sit for haircuts by himself. He’ll let my mom know when he’s had enough. He’ll come back when he can tolerate more. He can self-direct his participation. And they can both tolerate the buzzer!

In Ben’s case, the story is a bit different. Becky, Ben’s therapist, took over the responsibility of cutting Ben’s hair. She volunteered herself and has kept it up over the years. The results are satisfactory and we trust Becky completely, so we’ve let her choose when to cut Ben’s hair, how to cut his hair, etc. So, she manages the entirety of the project. Ben still cannot tolerate the buzzer, but seeing as Becky does it all by herself—controlling the environment in which the hair is cut is one of her strategies—Ben, too, must be doing better.

When the boys were little, I despaired of ever reaching this point. I know there are parents out there who are in the midst of that despair. But things do get better. Hang in there!

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