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A Matter of Instinct

  • Posted on August 22, 2014 at 10:00 AM

As Willy makes his way through adolescence, I can’t help but notice that he’s definitely a guy. I’m not talking about physical attributes here. This has nothing to with his Adam’s apple, body hair, or body size. I’m talking about the behavioral instincts that are surfacing.

Don’t get me wrong. Willy’s always been competitive. In the past, however, Willy’s competitiveness has always come across as an aspect of how he feels about himself: He took the words “winner” and “loser” far too seriously and would do almost anything to be recognized as the “winner.” Over time, we were able to address the root problem and teach him better gamesmanship. Still, there was always a part of Willy that sought out external validation.

Recently, I’ve been witnessing something entirely different. Just short of beating his chest like a gorilla, Willy has been exhibiting very masculine behaviors. I’m talking about the I’m-going-to-keep-pushing-until-I-impress-the-girl kind of behaviors. The only problem is that I’m the only girl here and that Alex and Ben are (usually) not seen as the primary threats. So, yeah, things are getting uncomfortably Freudian.

Last week, after Will kept pushing over something really stupid while Mark was actually trying to teach him something, i.e. not trying to engage in one-upmanship, I just had enough. Without going into anything Freudian (though Mark just had to bring it up), I explained to Willy what he was doing, why he was doing, and why I was definitely not the right person to impress. Then, I explained to him as best as I could that, despite the very male instinct he was displaying, these behaviors rarely really worked.

Maybe it’s just me, but I have never changed my opinion about a guy one iota (at least, not in a positive direction) because he won some sort of machismo contest with another guy. Who can dunk a better basket? I don’t really care, but if I had to guess I’d say Michael Jordan. Who can arm wrestle best? I’d guess the Hulk. Not the Hogan guy, either. I’m going with the green one. Who can beat the video game faster? Um. I’d guess the guys who designed it.

“No, no,” they’d tell me, “between us!”

I never got the point of these episodes until I got to college. It’s not that college boys made this any clearer; it’s just that I studied more human behavior in college. I remember raising my hand—I don’t know if it was my first psych class or the class on human sexuality—and asked, “Does this ever really work?” The professor (who was a guy) smiled, shook his head, and said, “But that doesn’t keep us from trying.” He went on to explain that it was genetically coded precisely because there was (must have been?) a time in human history or human evolution when it really did work.

I understand that, from the points of view of anthropologists and evolutionists, this “must” be the case, but I have to wonder if it isn’t just as plausible that human psychology was just as messed up back then as it is now. Guys did it because they thought it worked, just like guys still do it because, on some level, they’re sure it will.

Now that it’s my own son it’s ceased to be the least bit amusing. And I do NOT want to hear about Freud! After all, the dude thought young women “fantasied” about their fathers molesting them, because he couldn’t acknowledge that the fathers of respectable families could really be sexually abusing their daughters. Um, yeah. That’s credibility for you!


  • Posted on October 23, 2013 at 10:00 AM

I can’t help but be enthralled, and a little nostalgic, to see the way my boys are growing up and maturing. I suppose it’s a wonder for any parent to see the little person they knew becoming a grown up. However, I think it’s especially wonderful for me, because of the many times I was told children with autism don’t really grow up. It’s bullshit, of course. And I knew that. But, still, it’s nice to see my boys as living proof of it.

Don’t get me wrong. I understand how the mythos developed and I get why some parents tell themselves that it’s true. In some ways, it’s easier to see our young adults (and even grown up children) with autism who are significantly disabled as children. If we acknowledge they are adults, it becomes increasingly clear that they are being “left behind” by their peers and even clearer that their lives will be significantly different than we may have hoped. Yet, by living in an illusion of perpetual childhood, we’re doing them a disservice.

From the outside looking in, it’s easy enough to see the many ways Willy is maturing. He’s becoming his own man. He still has his playful, childlike side, which most teenagers do, but he’s also growing up in much the same way most teenagers do. His emotional and intellectual development continues to make leaps forward, but some areas are still underdeveloped. He’s becoming responsible, self-regulated, and intense in his need for self-determination. Best of all, he’s a good kid growing into a good adult, of that, there is no doubt.

From the outside looking in, it’s easy enough to believe that maturation has left Alex behind. He still has the same interests he did as a little child—art and Veggie Tales. He still doesn’t talk and he still struggles to perform academically, due to his communication deficits. He still has more physical needs than Willy does and is obtain a lesser degree of independence, and his gains come much more slowly.

But Alex is maturing in his own ways and in his own time. Unlike Willy, he’s not “out-growing” his earlier interests. But those interests are changing, developing, and refining. He’s becoming more aware of others and is seeking more mature, if atypical, interactions. He’s aware of his body’s changes and he’s aware of the inner changes, though it’s hard to know whether he understands what it means. Self-regulation comes more difficultly for Alex—it always has—but he’s making strides. He’s becoming more responsible, too. And he is also becoming more intense in his need for self-determination, but he also has more obstacles—primarily in communication—to achieving whatever his goals are. Sadly, we don’t always know what they are and it’s becoming more frequent that we don’t.

If we deny the changes our children undergo, we can’t help them to be all of who they are. We can’t help them reach their potential. Even though their potential is different than that of their peers, it’s still important for them and for us that they have the best chance they can to reach their own versions of success.

It’s a parent’s job to nurture children into adulthood. It’s also a parent’s job to let them go when it’s time. That means different things for different children. Sometimes it means moving far away. Sometimes it means taking risks we don’t like. Sometimes it means making choice we’d rather they didn’t. Sometimes it means being more themselves and taking a different place within a family unit. It’s different for each child, even when it seems very much the same. Sometimes it seems very different indeed. Yet, at the heart of it, it is the same. Children grow up. It’s our job to help them do that. First, we need to see that they can.

Growing Up

  • Posted on May 20, 2013 at 10:00 AM

The boys are growing up. Willy is 14. Alex is 13. Ben, my baby, is 10 years old.

In our society, especially now that a lot of women are pursuing careers before families, there’s a lot of talk about the ticking of biological clocks. I had my children young, so I’m still usually younger than the mothers of my children’s peers. I don’t really identify with the ticking biological clock. I’m in my early 30s. I could still have more children if I wanted to.

But I’ve got my hands full. And I can’t help but notice that Willy is only 5 years away from the age when I had him. That’s my biological clock.

I think back to who I was when I was 10, 13, and 14. I look at my children. I worry.

I remember people saying things like, “She’s growing up so fast.” Though, as a child, it never seemed like fast enough.

People don’t say that about my kids. They say things like, “They’re getting so big!” They say, “I can’t believe how tall he’s gotten.”

My boys are growing up. Their bodies are getting bigger. Willy is taller than I am now. Alex, still standing on his tip-toes, of course, can look me in the eye. Flat-footed he has about two inches to go before he hits my height. Ben is smaller. But, still, they’re all growing and maturing.

At least physically.

When it comes to emotional, social, and other life skills…

I worry that I won’t be able to provide them with the support and resources they need to pursue their dreams. I worry that society will still be stuck in its unacceptable attitudes that deny them the right to dream like their peers. I hope that they dream anyway. But hope doesn’t feel like enough.

Post-Op: My Tough Little Man

  • Posted on January 30, 2012 at 8:00 AM

In many ways, Alex still seems like a young child.  He enjoys Veggie Tales and other forms of entertainment geared for younger children, though admittedly Veggie Tales is one of those things that can be enjoyed for a lifetime.  He’s reliant on others for daily care needs.  He struggles so much with relatively simple tasks.  From a strictly “independent doer’s” perspective, Alex is very much like a young child.

But Alex isn’t a young child.  He’s a young man, a tween.  He’s a boy learning how to become a man. Brandon and Will’s paths to manhood, though each different from the other, have been more or less typical.  They each have their atypicalities, but the paths themselves form a linear progression, with ups and downs, regressions and bursts of development, lags and rushes, but more or less straight courses moving forward.  Their gains in independence have been fairly easy to mark and recognize.  Alex’s path is very different.  In some areas, he seems to make very little progress.  In others, he’s growing and changing.  But you have to be willing to see it, to recognize it, to acknowledge it.

Certain events and experiences show our characters.  These events come in many shapes and forms, but all represent hardships of one kind or another.  According to the movie, Shadowlands, C.S. Lewis compared these experiences to the master artisan chipping away bits of stone to form the beautiful statue we are to become; it’s painful, but necessary.  Other Christian references refer to the refiner’s fire or baking clay to make pottery.  The idea is that God is crafting us, as any master craftsman crafts his creation, and we are becoming more perfect by our times in the fire.

But not everyone survives this process, let alone becomes more perfect because of it.  We all struggle, we all fall, and we all fail at times, but some of us get back up and try again, try to be better.  Some of us sell out to earthly temptations.  Others break under the strain.

The vessel that is Alex—the outer shell, the body and its limitations—is childlike in many ways.  But inside Alex is growing strong and sure.  He endures.  He seeks comfort when it is needed, and accepts it when it’s offered, but he no longer clings to me as he did when a little child in truth.  He’s growing, he’s enduring, and he’s becoming the man he will be, slowly and surely.

I don’t know how to put into words what I observed.  It wasn’t so much a matter of doing.  It was how it was done, the spirit it was done in, and the way it was done.  Once, Alex was the happiest person I knew.  Despite his limitations, he was joyful and happy and exuberant.  The spirit shined and it was a light in our house that shone brightly and with a constancy that I dearly miss.  But the limitations and frustrations, not to mention the daily trials and intrusions Ben has placed on his older brother, have worn away that shine.  Alex is struggling.  But, as he suffered his recovery from surgery that first day in my mom’s house, I saw a renewal of that spirit, a glimpse that assured me it wasn’t gone or worn away, that it would shine again it its own time, as it shone that day he bore his pain and his new, if temporary, limitations.

The next day, Alex was back to struggling and discomfort, irritated and aggravated and frustrated.  But the light is there, waiting, banked against the daily trials, looking for the chance to shine again.  The vessel may not be perfect by man’s standards, nor even normal and acceptable; the spirit may still need perfecting by God’s standards, as we all do; but the soul in that little boy, who is becoming a man, is a great soul, full of something special that has nothing to do with “needs.”  Someday, and I’m committed to this, I will help to find a way for Alex to share this with the world, for he has something to contribute, something to be “productive” about, and I will not all that contribution to be stopped by earthly, able-minded prejudices.

My Little Cheesehead is Growing Up

  • Posted on December 14, 2011 at 8:00 AM

Alex turned twelve over the weekend. For eleven days out of the year, Willy and Alex are “the same age,” which pleases Willy to no end, though Alex doesn’t seem to care one way or the other. To celebrate Alex’s birthday, we had an Alex-centric meal of pizza, followed by brownies, because he prefers brownies to cake.

Alex is very much a Wisconsinite when it comes to the consumption of cheese. Cheese is Alex’s primary source of protein, including cheese sticks (not individually wrapped), grilled cheese sandwiches, and, of course, cheese pizza. He likes to peel the melted cheese off the pizza and squish it into a cheese-laced-with-tomato-sauce blob. Then, he eats the blob. He eats the pizza crust last. Well, he might. But he might not. This time he ate some of it, but concentrated on the cheese on the pizza and the breadsticks. He’s a very loyal cheesehead, just so long as you don’t expect him to care that the Packers are kicking butt.

Of course, when it came to presents, he had to get something VeggieTales, so I got him The Pirates Who Don’t Do Anything. The boys love it, though apparently it’s not as good for stimming as Moe and the Big Exit. I also decided to try something new. I bought him a gyroscope. I figured as much as he likes to look at things from all angles and as much as he likes things that spin, a gyroscope might be a good toy for him. So far it’s been met with a mixed reception. He likes it, but it’s not as interesting as VeggieTales. Go figure! One the up side, I learned the basics of how a gyroscope works, though this one doesn’t seem to be properly balanced.

As wonderful as Alex’s birthday celebration was, I can’t help but take a moment to reflect on Alex getting older. He’s twelve. He’s a pre-teen. In a year, he’ll be a teenager. Somehow his delays seem more significant in that context. While other kids his age are starting to look at gender differences and are exploring their feelings towards potential dates, Alex is still watching a show which is designed to teach little kids Biblical lessons.

I’m guessing that pronounced developmental differences like these are what lead to the perpetual-youth-myth when it comes to kids with severe disabilities. The myth certainly does have its appeal. How do you teach a young man who doesn’t talk, who has little control of his own waste removal, who is still fascinated with little kids’ shows, who, as per his own behavior, seems like a little kid, about his own sexuality? How do you prepare this young man for the decision he’ll face as an adult?

It would be easier to deny his sexuality and impending adulthood. He has the mind of a child, so he is a child. He’ll always be a child. We will always have to make his decisions for him. He’ll never be sexually active. He’ll never decide how he wants to live as an adult. That’s just the way it is.

There’s something appealing about that line of thinking. You see, if it were true, it would make things so much easier. And that’s the crux of it. Being a caregiver—oh the tremendous, horrible burden of caring for someone with special needs!—is easier than conscientiously parenting a child with special needs into the adult they will become, and putting the work and the skill-building into the effort so the child will be the best adult they can become.

It would be easier to deny Alex’s maturing sexuality, but I can’t. If you’re willing to admit and are in position to observe his more intimate functions, like changing diapers and bathing, you’ll realize that his sexual development isn’t going to wait for his emotional and mental development to catch up. It’s already started. To deny that won’t help anyone. Which isn’t to suggest that I have any idea what to do about it, but it does mean we’re going to have to come up with something better than burying our heads in the sand singing la-la-la-I-can’t-hear-you.

It can be difficult when your child becomes a teenager, as Brandon has proven for us. It will be difficult helping Willy to grow into his new role as a teenager. In a way, we don’t have to worry about some of the same things with Willy that we do with Brandon. But we’ll worry about other things. Alex becoming a teenager is going to be something else entirely. I just don’t know what yet. I don’t know how we’re going to handle that or what we’re going to do. For a long time, these problems seemed so very far away. Now, they’re almost here and I don’t know what to do.

But I do know that I won’t fall into the perpetual-youth trap. Easier doesn’t make it better. It certainly doesn’t make it honest. Alex is going to mature. He is going to become an adult. And it’s my job as a parent to figure out how to help him do so as best as we all can. Just like it’s my job to help Brandon and Willy become the best adults they can be.

It’s not about what’s easiest. It’s about Alex. And Alex grows, matures, and changes, even though his development is at its own pace and on its own track. He may not appear much like a typical pre-teen, but he is a pre-teen nonetheless. His body is maturing. He’s growing up. Denial is not the answer.