Displaying 1 - 10 of 537 entries.

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!

The Importance of Being a Trustworthy Parent

  • Posted on July 25, 2014 at 10:00 AM

Assuming our children are verbal, we expect them to answer when we talk to them. We expect them to listen, to answer our questions, and to tell us the truth. We learn, over time, that our kids will lie upon occasion. We try to teach them the importance of honesty, of authority, of coming to us when they’re in trouble. Rarely, it seems, do parents stop to wonder whether they’re worthy of what they demand of their kids.

From the beginning, I was reluctant to teach my kids to believe in Santa Claus. I still remember learning the truth of that. I didn’t learn the truth about Saint Nicholas. I learned that Santa Claus was a lie that adults told to little children. I learned that the letters, the news broadcasts, and the presents were all lies. I’d already figured out that the guy at the mall couldn’t be the real Santa Claus. But to find out there was no such thing…

As I child, I believed in fantasy. I thought, maybe someday, maybe if I’m lucky, I’d get swept away into Narnia. Or maybe I’d discover my own magic world—there are lots of them—and I’d get to go there. Maybe I’d get to go any time I wanted to. Life was rough and I clung to this fantasy longer than most kids. I read A Wrinkle in Time and the books that came after it, and I thought that maybe if I had my own magical, transformative experience I’d turn out alright, too.

When bad things happened to me when I was a child, I didn’t tell my parents. I didn’t tell them, because I didn’t trust them. Would they blame me for what happened? I got blamed for things that weren’t my fault all the time. Would they believe me? They didn’t always. Would they be honest with me about the consequences? Would I ever really know what would happen next? I didn’t know what to do, but I didn’t know what they would do either. How would they react? What would happen to me? I didn’t trust them. So, I didn’t tell them, even when I needed them.

I wasn’t completely alone. I didn’t keep everything to myself. But I didn’t tell any adults either. I told other children and we coped with each other’s problems, helping each other as best we could. I remember what that was like. I remember what had happened to me and how I dealt with it. The truth is that the events of my childhood almost destroyed me. Not only did I get myself in situations where I could have been killed and in situations where other people wanted to kill to protect me, but I nearly killed myself. I seriously considered it. And the only reason I didn’t is because I knew two people in my life would miss me too much if I did. Neither of them were my parents.

I remembered these events and I decided to tell my children the truth. I told them that Santa Claus was for pretend and that it was alright to pretend. I made it perfectly clear that it was perfectly okay with me if they wanted to believe in Santa Claus, but that they didn’t have to. I taught them the difference between what’s real (like a brother) and what’s pretend (like a story or a toy). I told them that they could play pretend, but that it was just pretend. My children—autistic though they were, disillusioned though I was—learned to play pretend just fine. They didn’t lose any of the magic of their childhood. But they knew the truth. And they knew I would tell them the truth if they asked me.

Being trustworthy isn’t easy. We’re socialized to shade the truth. We’re indoctrinated with the “goodness” of white lies. We’re taught to fudge the details, to shape arguments to our advantage, to shape opinions to be like our own. We’re taught that charisma and glamor are qualities to have and to believe in, to follow. And then we have to break down these socialized tendencies and tell the truth, even when it’s hard, even when it’s uncomfortable or unpleasant or even “unnecessary.”

It’s not that my children don’t lie to me. Each of my children who know how to talk has learned how to lie, whether they lie well or poorly. And they do lie. But, when it really matters, when it’s really important, they know they can tell the truth, no matter how hard it is, and they know they’ll get my help and that they’ll have input on what kind of help they get. In other words, my children know they can trust me—even the teenagers—because they know I’m worthy of their trust.

The Importance of Respecting the Personhood of Your Children

  • Posted on July 23, 2014 at 10:00 AM

You make love and you make a baby. For nine months, that baby grows in his or her mother’s womb. The baby is born. The mother holds the baby. The father holds the baby. They laugh, they cry, they rejoice together. Their love has made another life. This is their baby.

This is a common enough scene and a common enough sentiment. I know I’m fiercely territorial when it comes to my children. You try to hurt them and you discover that this mama bear’s got claws and teeth. I’ll shred you to bits if I have to in order to protect my children.

There’s a difference between these two sentiments. It’s subtle, but important. It’s one not enough parents seem to make.

A territorial parent will:

  • Protect their children,
  • Nurture their children,
  • Provide for their children, and
  • Make a home for their children.

Some of us go to extreme lengths to achieve these goals. We seek to guide our children and imbue them with the morals and values we believe in. We shape and mold our children, like clay, into the adults we’d like them to become.

A possessive parent will:

  • Protect their interests in their children,
  • Develop their interests within their children,
  • Provide their children with the things they wanted as children, and
  • Make a life for their children.

These parents may go to extreme lengths to make their children into the people they’d like them to be, and that’s often people like themselves. They seek to order their children’s lives and imprint them with the morals and values they believe in. They shape and chisel away at their children, like stone, to shape them into the adults they’d like them to become.

Children are not property. They aren’t possessions. They are human beings. They are individual, little people who grow into individual, big people. They have thoughts, feelings, and dreams that are all their own. Someday they will have the power to leave you. When that day comes the only reasons they have to stay in your life is because: 1) they love you, 2) they respect you, or 3) they’re too afraid to do without you.

Personally, I’d rather be loved, though I hope to be respected as well. I have no desire to be feared—by anyone, least of all my own children.

I’m a territorial parent. I’m active in my children’s lives and I feel a welcome obligation to be present, both for their sakes and for society’s sake. But I am not a possessive parent. As much as I say they’re my children, I do not consider them property. I do not own my children. They are my own, but I do not own them. The difference is subtle, yet important.

I look around and I see possessive parents, parents who are trying desperately hard to make their children into mini versions of themselves or to shape them into who they wanted to be but couldn’t be. You see this in upper class parents who demand their children live up to the family name. You see this in aspirational parents who demand their children be all they can be. You see this in impoverished parents who tell their kids to be realistic if they say they want to be doctors or presidents. You see this in gang families that expect their kids to get into the biz. You see this in sexually-abused single mothers who allow their young daughters to be sexually abused, too. You see this in families who take desperate measures to convince their self-announced gay child to be “straight.” And you see this in families where typically-developing parents take desperate measures to force their atypically-developing child to be “normal.”

History is on their side. It’s only relatively recently that children were recognized as people having rights and those rights aren’t fully developed yet. We still talk about “Tiger Moms” and wonder if it’s a good thing. There’s debate and discussion. It’s not clear to many how these behaviors show that the parent is dictating to the child who the child should be—not what, as in a doctor or a lawyer, but who.

Our children are people. They will grow into adults. What are you doing to make sure that the children around you have a chance to grow into people you want to be around and who will want to be around you?

My Myopia

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

First of all, I am myopic—in the medical sense of the word. Myopia really refers to nearsightedness and I’m nearsighted. I’m also farsighted, but that’s another story and another eye. Myopia has come to mean lack of foresight, obtuse; narrow-mindedness, intolerance. This is similar to how idiot used to refer to people who had an intellectual disability and is now used in a derogatory way to suggest that a person without an intellectual disability is foolish, senseless, and does things without thinking—which, if you’ve ever met people with intellectual disabilities, doesn’t often correlate to them at all.

Anyway, in common usage, I’ve come to hear myopic and myopia to refer to someone who is overly focused on one thing at the exclusion of other things, like the way a person with myopic vision (without glasses) will hold a book right up to their nose to read it, and will therefore not see what else is going on in the room. This is the sense that I’m using the word, and I feel wholly comfortable using it in that sense, because I’ve been both the person who is literally myopic and figuratively myopic, especially lately.

Most of my posts have been about me, my health, and my children, at the exclusion of everything else that has been going on. I’m not up on the news. I haven’t heard the latest. And I’ve actually found that I’m totally and completely okay with that. Unfortunately, I imagine that reading as I prattle on about my little life has gotten rather boring.

So, I’m sorry for being so myopic. I’ve put my glasses back on. Later this week, I’ll tell you what I’ve been seeing.

A Look Forward

  • Posted on July 18, 2014 at 10:00 AM

As the boys grow older, there are some things that are hard to ignore. Their bodies are maturing and we need to help them understand that. They’re heading for major life transitions and we need to develop a plan for what their lives will look like after school. There are choices to make, services to acquire, and things to set in motion.

These things are difficult in the sense that they consume time and energy. They need to be planned and those plans need to be led, not by Mark or me, but by our children who will be living those plans—for better or worse. These things are easy in the sense that there are choices, paths, and opportunities. We can do something about these things.

Sometimes thoughts sneak up on me that I did not expect. Earlier this week, as I was talking with our friend about her young children, it occurred to me that we might someday have a similar discussion about our children’s children. If scientists are to be believed, the human race—like every other species on earth—has a natural impetus to reproduce. The mating process encourages survival of the fittest. If all that is true, then there seems to be a lot of unanswered questions, like how “fitness” is decided and why social structures perpetuate qualities that do not seem to be in the best interest of the species.

Personally, I believe man-made science seeks to explain what God already understands, because God created a system that truly works. I know, despite our best efforts, we’ll never completely understand how the universe works, because we have finite minds and a system like the universe works on levels far beyond what we can grasp. As an example, what are the full implications of light that can act as both a particle and a wave? Why must light be both a particle and a wave to serve its purpose?

Whether or not my children have children of their own isn’t going to be determined by science or who is fittest, but by the choices they make and what God wills for them. That’s what I believe. Yet I think there’s something to that natural impetus. I’m too young for grandchildren, but that doesn’t mean that I don’t want my children to be able to have children of their own. I think that should be between them and whoever they might conceive the child with. It’s not up to me, nor should it be. It’s not up to the government, nor should it be. It’s not up to society or any self-entitled group or person.

Unfortunately, human society has produced numerous people and groups that believe they should have the power to make those kinds of decisions. This results in dramatic, world-changing affairs like the Holocaust and the other genocides that have been committed in the name of various forms of purity—as if any kind of purity could be acquired by drenching the earth in human blood. This also results in less dramatic, but equally evil affairs like forced sterilization and denial of reproductive rights.

I can influence many things about my children’s future. I can fight with every ounce of my being that eugenics does not prevail. Yet I know that this silent, hidden enemy is alive and well and plays a very current, if less dramatic role, in contemporary society. I don’t want to look into the future and see this possibility, but denial doesn’t mean it isn’t there.

Back in Time

  • Posted on July 17, 2014 at 10:00 AM

A friend came to visit while I was sick. I tried to stay away, but she poo-pooed that idea. I met her twins—a boy and a girl—for the first time (at least it was the first time I could remember). They’re fifteen months old and their adventures made it perfectly clear that our house was no longer baby-proof.

Over ten years ago, I went on a journey of discovery. I found Birth to Three, I found a doctor to diagnose first one son, then another. I navigated IFSPs and IEPs. I wrangled with diagnoses, labels, and services. And now I see this friend beginning a similar journey.

She knows she’s “different” and she has received diagnoses of disabilities for herself. Now, she’s seeing herself repeated in her daughter and she’s seeing other traits that are duplicated but different in her son. They both have developmental delays, though they started services early enough that they’re “almost caught up.” They both have sensory issues and may or may not have autism, Asperger’s, and/or epilepsy. (I didn’t see any pronounced signs of any of these diagnoses.)

This woman’s situation is complicated by the lack of a spouse, an antagonistic “support system,” and the involvement of social services. As a person with disabilities, she was vulnerable to the maneuverings of people who wanted CPS to remove her children from her home. Now, she’s taking the hard road back to regaining custody.

Hers is a different journey than mine in many ways. There are things Mark and I have no experience in. There are other things that we do know more about than she does. We can share the wisdom of our experiences. We can empathize with her frustrations and her struggles. We can remind her that, above else, her first job is to acknowledge that her children are different, that it’s okay that they’re different, and that focusing on what is and isn’t normal is not the best way to serve her children.

We can be for her the friend we didn’t have when our children were that little. It seems small, but it’s something that means a lot, at least to us.

Still Progress

  • Posted on July 16, 2014 at 10:00 AM

Two steps forward, one step back. It’s not the kind of progress I want, but it’s still progress.

Willy got sick. He felt unwell for less than 24 hours. I got sick, too. I felt unwell for three days. Neither is particularly unusual. Willy has a robust immune system. I don’t. Willy inherited his from his father.

So far, neither Ben nor Alex has shown any signs of illness, though I suspect my mom might have it. Willy had gone over to her house to play, ended up getting sick, and then spent the night. Still, I was the one who came down with it second, after Willy. If my mom got it, she waited a few days before showing signs of it.

I may have been exposed earlier than her, but neither Mark nor the younger boys are showing any signs of it. It comes down to my physical weakness. It was a rather mild illness, as far as those things go, consisting of headache, a slight fever, and nausea. The weakness lingered for me, forcing me to sleep even though I was too comfortable to sleep well.

I had just gotten back on track to where I wanted to be, then I got sick—and I was forced to sleep—and got shoved off track again. My battle with my to-do lists is so tenuous it doesn’t take much. Losing a single day sets me off track. Losing three… *sigh*

The only thing that’s saving me right now is that I wasn’t going at my full pace. I wasn’t even trying to be full-time. So, in that sense, it should be easier to catch up. Of course, the reason I wasn’t going full-time was because I don’t have the strength for it, so I doubt I have the strength to “catch up” either.

Two steps forward, one step back. It’s still progress, but that doesn’t mean I have to like it.

Speaking of Progress

  • Posted on July 11, 2014 at 10:00 AM

Having surgery, then sleeping through a good portion of my recovery, gave me something of a power boost. I felt better than I have in a long time. My mind was clearer, at least for a little while. After I came back to work full-time, I realized two things:

  • First, the time I put in when I could only work part-time wasn’t as clear, coherent, or organized as it seemed at the time.
  • Second, my priorities had shifted because I’d had plenty of time to consider what was going well, what wasn’t, and what I could do about it.

I cleaned up my messes. I cleared up my backlogs. Now, I’m feeling like I’m really and truly back. I’m ready to walk my walk and make it work. My priorities truly have shifted.

I’m going to keep these shifts close to the vest, but I’ll give you a hint…I’ve talked about doing this before, but then I lost track of it. I’m starting fresh, breaking free, and doing a little cheating.

It’ll make sense in time. For now, I’m just going to enjoy being back and keeping my little secret. :)

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.

The Mystery of Sleep

  • Posted on July 7, 2014 at 10:00 AM

So, it’s very early Monday morning. I have an hour to decide whether or not I’m even going to try to sleep. It’s around 3 am. I have a meeting at 9 and an appointment at 11:30, which means I have to be up at 8 at the latest, which means if it’s going to be worth it at all I have to be in bed shortly after 4 am.

My mind is still buzzing. I feel the pull of work. But I know I’ll be exhausted by 10 am and I can’t miss my appointment. My meeting might give me the buzz I need to keep going. But I’d been hoping to use this as an opportunity to switch over to a day schedule. Day schedule, schmay schedule, you say…but I like being awake for the boys. The quiet of the night has lost its allure.

I don’t get it. I really don’t. After my surgery, I slept as much as I needed to, more than I thought I possibly could. I continued to sleep well for a few days. When I was able to stay up more, I felt better. Better than I had before the pain that made the surgery necessary. I felt good even.

And then, just like that, I was back to my lack-of-sleep schedule.

Within days, I was back to being tired. Not nearly as tired as I’d been before, but more tired than I should be considering I’m getting more sleep than I was…it’s just during the day. It’s still about two weeks before I see the sleep doctor. I really, really hope he’s got a solution in mind, because I’ve got nothing. I have no idea how to fix this.