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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!

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.


  • 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!


  • 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.

Summer Swim #2

  • Posted on June 23, 2014 at 10:44 AM

Last Thursday was another Summer Swim. As you might recall, the last Summer Swim didn’t go very well. Thursday was a much calmer day for me. I wasn’t in a rush. Thursday was a much calmer day for Alex. He’d spent much of the day over at my mom’s house. Thursday was a much better swim day.

Perhaps it was because he started out so much calmer. Perhaps it was because the pool was just a tad bit warmer. Perhaps it was because there were fewer people there this time. Perhaps it was just a little more familiar.

The moment Alex got into the pool he crossed over to the other side. We were still in the shallow area, but we were on the far side, which just happened to be away from almost everyone else (at least for a while). Alex started to play in the water right away. He liked pushing the mini-surf board down in the water. It was designed for a child to lie on so his torso was supported while he paddled across the water, but Alex tried very hard to sit on it. He also played with a ball. The inside was soft sponge and the outside was coated in plastic. I suppose at one time it was waterproof. Now, the coating was cracked and punctured. So, Alex filled it up with water and then squeezed the water out, sending spouts of water over his face and into the air around him. He loved that! It also turned out to be a great alternative to pinching.

Last time, I could barely get Alex to go out into the deep end where we could just barely touch. This time Alex not only gravitated to the deep end, but he wanted to go over the floating line to the deepest end where we couldn’t touch at all. In the deep end, we worked on getting him to lie flat and he did. We worked on getting him to kick his legs and he did. We worked on getting him to float on the board and he did. Then, after much urging on his part, I took him past the rope.

We made it out a little ways and he was swimming with the help of the board and the life preserver. He kicked his feet. He clung to the board. Then, he pushed the board away from him and sunk into the water. I grabbed his waist while he laughed and I swam one-handed back to where I could touch the bottom. We went back over the rope to where it was safe. He tried to go back out into the deepest end several times before it was time to go, but I wouldn’t let him. When he got upset he squeezed the ball instead of pinching me. We stayed in the pool until the lifeguard called out the time and then we slowly, reluctantly made our way to the ladder. We left with smiles.

A Taste of Summer

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

Last weekend was a long weekend. Not only were the boys home from school for three days in a row, the heat index climbed enough for me to turn on the air conditioning. This being Wisconsin, I can’t help but point out that it was just last week that we had the furnace running at night. Of course, a house with better insulation and windows that can open safely would improve things, but I’m not making that kind of money yet.

More to the point, both Ben and Alex decided to be particularly irritable on the same sweaty day and lashed out at each other. Separating them was a challenge, because they both seemed inclined to take their frustrations out on each other. Neither one of them was particularly interested in being soothed or distracted. They went after each other, even though neither of them was the real source of their different frustrations.

I look forward to summers, because it means I’m not a “slave” to the morning routine regardless of my level of sleep (or not), which is particularly unpleasant considering I really do need a sleep study – if I can actually sleep for them. On the other hand, it’s nice for Alex and Ben to be separated for a good chunk of their waking hours, because they tend to get along better when they don’t get quite so much of each other.

Maybe this summer will go better. Maybe they’ll learn to like each other or at least not to hurt each other. Maybe. Maybe we need a plan B.

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.