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It’s a Matter of Trust

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

There are those who believe that people with autism, i.e. adults with autism who have the resources to self-advocate, should lead the discussions and decisions related to autism. Many of them have expressed it this belief as a matter of logic; others have expressed it as a matter of justice; and others have demanded it as their right. Those outside of these circles sometimes see this demand as self-advocates wanting to wrest the decision-making powers from parents and researchers and practitioners.

There is some truth to their claims on these powers, but there is also some untruth to these claims. With regards to researchers and practitioners, it’s a matter of scientific practice and scientific integrity. They want to control their own efforts, and they have a point in that regard; a scientist should not be forced to study something that does not interest him or her. Fortunately, the public doesn’t have to fund the objectionable research particular scientists may wish to engage in, but that doesn’t mean they won’t find funds elsewhere. But, for the moment, I’m not concerned with researchers or practitioners.

As a parent, I empathize with the position of parents. That position can easily be summarized: You don’t represent our children. Whether we’re talking about adults with autism or researchers and practitioners, the truth is that you do not represent our children, no matter how much you might want to do so. If our children are of age and have the necessary resources to self-advocate, then they can self-advocate and then we have to accept their rights to do so. If our children are not of age or cannot advocate for themselves, then we have the right and responsibility to advocate for them.

For some parents, it truly is a matter of power. Some parents continue to exercise excessive power over their children long after their children are able to engage in self-determination, self-advocacy, and self-fulfillment. They actively seek to deny their children the necessary resources to self-advocate in an attempt to maintain control of their children; they may also actively discourage self-advocacy. For the moment, I’m not concerned with them.

I’m concerned with the parents who advocate for their children because life has taught them that no one else will do so. I’m concerned with the parents who have been burned by school systems, medical facilities, and governing bodies. I’m concerned with the parents who know that their children’s interests are threatened and who stand up to speak out against those threats.

We will not let you advocate in the names of our children, because we don’t trust you. Our ability to trust has been damaged, assaulted, and betrayed. We’ve learned the hard way that “the system” doesn’t really protect our children’s interests unless we advocate for them. We recognize that you may be well-intentioned, but that doesn’t mean that you know what our children need. Furthermore, we recognize that you may not be well-intentioned; you may be self-serving and we know what serves you does not necessarily serve our children.

If you earn our trust, then we can cooperate with you and even collaborate with you. But we cannot step aside. We cannot leave the work for you to do. Our children need us to speak up. We cannot trust you to do so.

Is Peace Possible?

  • Posted on September 8, 2014 at 10:00 AM

Peace is an elusive concept in contemporary society. On the one hand, we fight wars abroad and we’re so comfortable in our lives that many seem to forget that we’ve been continuously at war for over a decade. On the other hand, we fight different kinds of wars on our streets—wars against immigrants, against drugs, against gangs, and against each other. If we had yet a third hand, we could count the verbal wars that take place in our political bodies, in our dialogues about significant matters, and even in our dialogues about trivial matters. And if we had yet a forth hand, we could count the wars that rage within each of us between what our conscience dictates and the weakness of our flesh—wars for our very souls. So, it seems self-evident that peace really isn’t possible.

There are powers within this world that would have us believe that is true, that peace isn’t possible; if we give up on peace, then we give those who want war power over us. Yet peace is a choice. We can make peace with ourselves, both between our spiritual potential and our earthly present. We can make peace with those we disagree with and even cooperate and collaborate with them. We can bridge the divides that separate us and make peace on our streets. We can even make peace in the world. So, contrary to the obvious, peace is possible.

The autism community is fractured. There is a side—a loud, squeaky-wheel, powerful side—that wants to do anything and everything to cure autism. There is a side—a loud, squeaky-wheel, growing side—that wants to do anything and everything to protect people with autism. There are various factions interspersed among these two sides that prove that our reality cannot be defined and delimited as a dichotomy. The autism community is at war.

There are some among us that will never choose peace. This is not due to their convictions that they are 100% right and the others are 100% wrong, as it may seem. It is because they want war, because they thrive on controversy, because they choose to grasp for power, to exert their control, to have their say, and to get their way. For some, war is a way of life, but these people are only a small percentage of the autism community. They succeed only because we let them.

Most of us want peace. We want cooperation. We want collaboration. We want things to get better. And we’re willing to work for it. But we feel overwhelmed and overwrought. It can be so hard simply getting through the day that we leave ourselves little energy for peacemaking. It seems easier to fight for the specific things we believe in and want than to make a peace that will provide those things. Besides, we have few contemporary examples on how to bridge such divisive issues into workable, cooperative, collaborative solutions. Is peace possible? Perhaps, perhaps not. The answer lies within us. We have to choose.

The Upcoming Appointment

  • Posted on September 5, 2014 at 10:00 AM

It’s finally happening. After waiting for over a year, Alex finally has an appointment at the speech clinic. I’ve waited so long that I’ve almost forgotten what it is I’ve been waiting for; but, now that it’s really happening, all that hope comes back to me. Alex…fitted with a communication device. Alex…able to tell us what’s on his mind. Alex…obtaining the power of words. Now that it’s so close, all of these hopes sound too good to be true.

I know it won’t be as easy as matching him up with a device and seeing magic happen before our very eyes. He’ll need to learn to use it. We’ll need to learn to use it. We’ll need to work together to make it work. But, still…part of me expects that this will be some sort of magic key that unlocks the inner workings of my child and reveals all that he’s been waiting so long and trying so hard to tell us.

I want to believe in magic. Part of me, the childlike part of myself that I’ve never lost, really does. I certainly believe in miracles. But it seems like too much to expect either. Between hope and anxiety, I wait for the upcoming appointment with tingling underneath the skin and tears right behind my eyes. I know there are words inside that boy!

Will this be the way we can at last get them out?

School-Year Anxiety

  • Posted on August 8, 2014 at 10:00 AM

After the muddled end of my last school year, I admit I’m anxious about starting up school again. I still haven’t quite gotten a handle on my fibromyalgia. My business is growing, but it’s growing primarily in a way that involves me doing more work to make it grow, as well as the work I need to do to provide for my family. I’m not up to a full day’s worth of work, quantity wise, even though it takes me a full day (or longer) to do it. I’m not sure how I’ll strike a balance between work and school once it starts, since both are priorities. There is so much that is unknown and I feel so unprepared, that there’s definitely an anxiety factor involved.

Willy, on the other hand, seems willfully unaware that school will start in less than a month. He will acknowledge it if I bring the issue up directly. He’ll discuss what concessions he’s willing to make with regards to new clothes, new school supplies, new shoes, and a new backpack. He’s willing to talk, briefly, about how he felt last year went. He won’t talk directly about his hopes and fears about the coming year. It’s difficult to weigh his anxiety levels, because he asserts a blasé attitude that seemingly belies his willfulness on the matter.

Alex, of course, is impossible to gauge. Honestly, I think getting back to the routine of school will be good for him. We have had something of a routine this summer, which has helped; but it’s a routine that spreads across the week, not over a single day, and it’s subject to far more change than the routines of school. This is not to say that he isn’t experiencing anxiety over the start of school. It’s more to say that it’s difficult to judge that anxiety relative to the buzz of anxiety he seems to feel most of the time. There are times when he’s completely free and, by noting those times and repeating the surrounding circumstances, we’ve even been able to increase them. However, the onset of anxiety is never so easily pinned to one cause or another, because he can experience both instantaneous and delayed reactions, depending on his processing during the moment. He seems to be handling the idea of returning to school well, but it’s hard to tell.

Ben is another matter. He seems genuinely unaware of the imminence of school. If I bring it up, his behavior reflects a belief that what I’m saying is not interesting, and therefore not worth attending to. This doesn’t necessarily suggest a blasé attitude similar to Will’s, because Ben’s hyper-focus can be very difficult to break through, even if you attempt to do so with something immediate, tangible, and desired. Ben has very much been “in his own world” this summer. He’ll zone into something desired and prolong it as long as possible. The easiest way to break him out of it (not that we do this on purpose or anything) is to give Alex the opportunity to do something he likes to do that annoys Ben. Ben will stop whatever he’s doing, wherever he’s doing it (as long as they’re both in the same house) and try to make Alex stop. If Ben cares one way or the other about the start of school, then he’s not saying so. I suspect he’ll care once he has to go back to focusing on tasks and timetables that other people set for him.

Of course, Mark is the stay-at-home parent who is not going to school, so the start of school means something different to him. I remember what that was like and, if he’s anything like me, he’s looking forward to the relief. After all, he’s borne the brunt of a difficult summer. He’s definitely ready for a break! And he definitely deserves it!

Time to Shop

  • Posted on August 6, 2014 at 10:00 AM

As those of you with school-age children will know, it’s time to do the before-school shopping, where you get all the school supplies the school says your child will need for the year, as well as a closet-full of new school clothes (if you can afford that sort of thing). In a household with children with autism, this ritual is modified. While the modifications depend entirely on the child, here are a few things that might occur:

  • Your child does NOT want new clothes—no matter how cool they happen to be. Even new socks and/or underwear can ramp up the before-school anxiety.
  • Your child does NOT want a new backpack—even if the old one is falling apart and held together with duct tape.
  • If your child MUST have a new backpack, then it MUST be the same style, size, and color as the backpack that is being replaced.
  • If your child MUST have new clothes, then the outfits should emphasize comfort and should not be stress-inducing or exciting; whether the clothes are “cool” or not may not matter to your child.
  • Your child may require a set of “school” supplies for home, as well as for school, because paper, pens, pencils and crayons are always welcome. Your child might “break into” his or her school supplies if a set of the most desirable items is not purchase for immediate, at-home use. This can also reduce anxiety about going back to school.
  • Your child does NOT want a new pair of shoes—even if his or her shoes are too small or have holes in the toes and in the soles.
  • If your child MUST have new clothes/shoes, then they should be as adaptable as possible, meaning that it is ill advised to get a new summer set and then, later, a new fall set. If possible, get a new set that will be adaptable until the next growth spurt, adding new items as the seasons change.
  • Your child may have absolutely no interest in going shopping with you; the added stress of shopping on top of the near-constant back-to-school stress may be too much for your child to bear. If your child says, “No” in any way, shape or form, honor that choice if at all possible.
  • If your child MUST go shopping with you, please respect your child enough not to drag him or her to multiple stores in pursuit of the best deals—the cost savings is not worth the stress this will cause your child. If possible, avoid peak shopping times.

For many children with autism, going back to school is stressful enough. For many children with autism, going shopping is stressful enough. Combining the two is a disaster waiting to happen. Please honor and respect your child’s needs during this stressful, anxiety-ridden time.

If I were a witch…

  • Posted on August 1, 2014 at 10:00 AM

In the last couple of months, I’ve watched all 8 seasons of Charmed. I didn’t much care for the Prue/Paige switch up. I didn’t much care for the way they axed out Cole. But I kept watching. Unlike the upheavals in Buffy the Vampire Slayer, I didn’t buy into it nearly as much after a while. I mean, I “get” the whole Paige deal, both from a practical angle and from a story angle. But, really, did they have to make her quite so consistently, persistently bratty?

The Cole thing really bugs me. To go ahead and spoil things, Cole starts out evil, then he falls in love with his “mark” and becomes good, then he becomes evil to save the one he loves, and then he becomes good by being stripped of his powers, and then he saves the one he loves and becomes evil again—this time through absolutely no fault of his own. And then they “kill” him for it. Except, dead isn’t so very much dead for him. He comes back, less evil, and tries to be good. But they’re just done with him.

The thing that brought Buffy to mind is that it was once revealed that Buffy’s two vampire romances were both metaphors for different kinds of abusive relationships. It was intentional. I suspect, on some level, the Cole thing was the same kind of deal. The message being that love can’t save someone who is abusive.

On the one hand, Cole reminds me a bit of another topic that grates. Cole will do anything to save his love. As a parent, I will do almost anything to help my children. Yet, I define help as being “help my children to be wholly and completely the best selves they can be” and not as “help my children to become normal.” That’s a distinguishing factor. I also define help as “do no harm,” which means I’m not going to risk their health to make them what I want them to be. I stress almost anything because there are trade-offs. I’d rather be poor and raise my children than rob a bank and give them wealth. If an attacker broke into our house and threated my children, then I believe I’d be able to kill to save them, but I could never be an assassin to earn our bread. Almost anything.

Cole doesn’t get the value of almost anything.

If I were a witch, it wouldn’t be like Charmed. I have a tenacious belief in free will. Being a werewolf or a vampire or a human being doesn’t make you a monster. What you choose to do with what you’re dealt makes or breaks you. You don’t have to be evil just because others say you are. You have a choice. Cole’s choices, while misguided, were driven by the greatest power this world knows: the power to love another more than the self. That can be nurtured. That can be harnessed. That’s the stuff of miracles.

I’m all for saving innocents or, rather, innocence. But I can’t help but think that Christ didn’t come to save the innocents. He came to save the guilty. We all fall short. We all make mistakes. We’ve all sinned. We’re all fallen. None of us are truly innocent. But that doesn’t mean we can’t choose to be good and it doesn’t mean we’re not worth saving.

If I were a witch, I wouldn’t magically cure my children. I might try to write a spell that enables Alex to talk, but he’d talk as a person with autism, a person who is one version of autism. If I were a witch, I wouldn’t devote all my energies to saving innocents. I would devote my energies to helping people see the consequences of their choices, so they could make better choices. I would try to empower others, using magic to release the untapped potential in those I meet. But you don’t need magic for that; you need love—the kind of love that values others as much as or even more than the self. Then again, maybe that is magic, maybe it’s the best magic of all.

What’s Out There?

  • Posted on July 30, 2014 at 10:00 AM

Parents worry a lot about what it will be like when our children go out there, out into the world. For some, worries revolve around the violence and crime that permeates our world. For no reason, for no reason at all, a car could slam into a child and take that child from this world. Does it really matter if the road was slippery due to rain or snow? Does it really matter if the driver was tired or drunk? Does it really matter if the driver was in a get-away-car or going for a joy ride? What matters is that the child is gone and there’s no reason for it.

For some, worries revolve around society and the judgments society makes about individuals. For no reason, for no reason at all, a child can be harassed or bullied or killed. Does it really matter if the child is gay or straight? Does it matter if the child is typically developing or developmentally delayed? Does it matter if the child is autistic or crippled or seemingly normal? Does it matter if the child is black or white? What matters is that the child is hurt, scarred, or gone and there’s no reason for it.

For some, worries revolve around the child. For no reason, for no reason at all, a child can be sick or dying. Does it really matter if it’s leukemia or AIDS? Does it really matter if it’s epilepsy or traumatic brain injury? Does it matter if the disease is rare or common? Does it matter if it’s acquired or if the child was simply born that way? Does it matter if the life expectancy is a month or a year? What matters is that a child is hurting, growing weaker, slipping away, and then gone and there’s no reason for it.

I look out into the world and sometimes what I see terrifies me. I don’t want to go out there. I don’t want my children to go out there. And I honestly just don’t get it. There’s enough pain and suffering in this world that we can do absolutely nothing about! Why in the world would anyone want to bring more pain and suffering onto others by committing crimes, acts of violence, or acts of negligence?

I realize, logically, that these people aren’t thinking about other people. The man who drinks himself stupid and then gets behind the wheel isn’t thinking about the people he might hit along the way. He’s drowning some sorrow in booze and then thinking, if you can call it that, about getting home. The man who holds up the convenience store isn’t thinking about the people he’s robbing or the people he might hurt or kill in the process. He’s thinking about what he wants and the quickest way to get it. The kid who bullies another isn’t thinking about that other kid. He’s thinking about his own pain, his own inadequacies, his own need to feel better, superior, cooler, or whatever.

I think about other people. I think about my family, my friends, my neighbors, and the strangers that are around me. I look before I backup. I drive carefully and soberly. I don’t drive when I’m impaired. I’m cautious, careful, hardworking, and loving. In a moment, my world could be changed by someone who isn’t like me. In a moment, my child or my husband or I could be gone from this world. And so I worry. I try not to think about it, but I worry nonetheless.

Sometimes I wonder why parents like me, parents of children with autism, try so hard to get their children out there, out into the world. Sometimes I think we’d all be safer if we just stayed home whenever possible. Go to work, go to the store, go out to eat upon occasion, but stay home and stay safe as much as possible. But even that kind of safety is an illusion. What’s out there can come in here without warning.

Self-Stimulation

  • Posted on July 28, 2014 at 10:20 AM

From the outside looking in, perseveration can look upsetting. Imagine Alex, a fourteen year old boy, waking himself up at 5 in the morning so he can get the first crack at the computer. For two or three hours—however long it takes for someone else to wake up and take a turn—he’ll sit, stand, bounce, and jump in front of the computer to the sound of the VeggieTales theme song. The clip lasts from one to three minutes, depending on the version he finds on YouTube, and he watches it over and over and over again. Occasionally, he’ll move to different versions of it. Sometimes he’ll even move on to different songs, like “The Hairbrush Song.” Rarely, he’ll watch a whole episode.

Alex “stims” on VeggieTales. “Stim” refers to self-stimulation, which is an outside-looking-in coinage of autistic behavior. Basically, the implication is that the person is providing him or herself with stimulation, and that this is somehow unusual.

Think about that for a moment. When I was growing up, all the parents—not just mine—were always encouraging us kids to “amuse ourselves.” You’d hear parents of typically developing children encourage the same thing now, except that it’s so much easier to do when we provide our kids with technological devices like Wiis and smartphones, so “amuse yourself” barely takes any encouragement at all. Instead, we hear parents complain that their children are too connected.

Therefore, one must conclude that self-stimulation isn’t the problem. This leads to the obvious assumption that the unusual nature of autistic self-stimulation is the perceived problem and that, because it’s unusual, it is somehow damaging or destructive.

So, let’s go back to Alex. If you interrupt him before he gets it all out of his system, he gets upset. When upset, he may bite his wrist. He may pinch others. He may pull at others, especially the person who displaces him in front of the computer. The problem here isn’t that his self-stimulation is atypical, nor even that he’s compulsive about it. The problem is his inability to cope constructively with being upset.

The thing that gets me is that it’s supposed to be self-stimulation. We all do it. It’s a normal behavior. But since autistic people aren’t “normal” people, the way they choose to stimulate themselves isn’t “normal,” either. And the point is…? They’re not trying to stimulate “normal” people, they’re trying to stimulate themselves, so why not just let them get on with it?

Let’s do some contrast. Mark is a compulsive Facebook user. He’s in groups. He even started his own group. He plays games. He chats with friends and strangers alike. He’s more social on Facebook than he is in “real” life. And, from the people I’ve seen out in the “real” world, these are perfectly normal behaviors. But they’re not behaviors I do, nor am I particularly empathetic to Mark’s compulsivity with Facebook. I just don’t get the attraction.

On the other hand, I like to watch television shows and movies on my computer. I’ll start and stop them in between doing my work. I’ll compulsively run through an entire television series in a matter of weeks, depending on how long the show lasted. Considering that Netflix and Hulu thrive on this trend, I know I’m not alone. It’s a perfectly normal compulsion. But they’re not Mark’s behaviors, nor is he particularly empathetic to my compulsivity with Netflix. He just doesn’t get the attraction.

We don’t get the attraction for Alex, either. But it doesn’t matter. It’s a “live and let live” thing. It’s self-stimulation!

Recovery-In-Progress

  • Posted on July 9, 2014 at 10:00 AM

So, I went to my post-surgery check-up, but the surgeon wasn’t there. I don’t know why I thought he would be. Instead, I met with another assistant. She checked out my incisions, but other than that the check-up was all verbal. I told her what I had experienced, good and bad, with my recovery thus far. She was pleased with my progress.

Her informed assessment, however, was something of an obvious conclusion. I’ve had too much stress. On the one hand, my life is stressful. This is seen as being particularly true whenever I bring up the boys. I brought up the boys to make the point that I’ve spent too much time putting their health (and educational) needs first; and that I’ve been putting my own health on the backburner for far too long. Her point was “Wow, three with autism, that’s got to be stressful all by itself.” Hm. Yes, I suppose it is, but not nearly as much as people might think, especially now that we’ve figured out what works for them.

On the other hand, she also made a point of stating that my body has been under particular stress lately. My crash or flare up, my diagnoses, my sleep issues, and now surgery – there is absolutely no “wondering why” I’m physically fatigued. No matter how much I may want to accelerate this process, and just be better already so I get back to things that matter, the fact is that my body is still healing, still recovering, and that this matters, too.

There’s so much I want to do…but if I focus on that, instead of on what I can actually do right now in this given moment, then I just add to my stress unnecessarily. For some, this might seem self-evident and obvious. For me, it’s kind of revolutionary. My idea has generally been: “Get through this as quickly and thoroughly as possible, so I can get on to the next thing.” It’s not that I am in such a hurry that I forsake quality, because that isn’t effective. It’s that I’m so focused on doing as much as possible that I’m actually reducing what I’m capable of because too much of my energy and focus is spent worrying over or planning for things I can’t do yet.

Here I am trying to recover, trying to build my capacity, and I’m eroding my good intentions with unnecessary stress. [Grumble, grumble.] I swear I’m going to get this balance thing right one of these days.

Ben’s Happiest Time

  • Posted on July 4, 2014 at 10:00 AM

When Alex leaves the house, the Ben comes out to play. This is not to suggest that Ben doesn’t play when Alex is in the house or that Ben doesn’t play when he goes out of the house. Ben is a typical kid, at least in the sense that he can play wherever he is and will do so without the least bit of encouragement (as long as you don’t account “typical play” as the only kind of play).

Still, it’s hard to say who enjoys Alex’s respite time more. Alex has a blast, whether he goes with his respite therapist or whether he goes with my mom. Ben has a blast because Alex is gone. They both enjoy their time away from each other.

Now, when things are reversed and Ben is out of the house, Alex enjoys Ben’s time away, too. The difference is that Alex, while having more fun than usual, is also calmer than usual. He doesn’t have to worry about Ben bursting in on the scene and stealing his fun away. When Alex is gone, Ben has his fun without trying to be the least bit calmed by it.

I swear, these boys’ ability to aggravate each other is epic. The term “epic” has become so overused I’m pretty sure it’s not “cool” any longer; but really, there is definitely something epic about the Ben/Alex battle. There is the typical sibling rivalry, of course: They like many of the same movies, toys, and activities, but don’t want to share them with each other. It’s more than that, though.

Alex exacerbates Ben’s sensory issues. Ben exacerbates Alex’s sensory issues. They have mutually exclusive coping strategies. Ben’s been such a bully for so long that Alex has given up the nice-guy routine and let’s loose on him. Ben is more vicious, but Alex is bigger. Alex still loses unless he’s willing to go all out; luckily, he has a genuinely gentle nature; unfortunately, that means Ben wins more often. It’s sibling rivalry on autism and I don’t like it.

So, Ben’s happiest time is when Alex leaves and my happiest time is when they’re both having fun, even though it happens when one of them isn’t here. It’s not that I want one or the other out of the house; it’s just that I want them to be happy—both of them at the same time.

Summer’s going great, let me tell you.