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Alex’s Visit

  • Posted on August 15, 2014 at 10:00 AM

Sunday was a work day. It wasn’t supposed to be, but I stayed up late into Sunday morning getting things done. Then, I slept until Sunday afternoon. When I woke up, I went right to my prayer journaling, then my independent studies, then to work. Alex only saw me on bathroom breaks. I’d give him a kiss on the forehead, untangle myself from his pinching fingers, and be on my way. I didn’t like it much better than he did, but at least I understood it. Alex was just plain frustrated with me.

Then, my mom came over. Willy ran down to tell me she was here. I was in the middle of something and didn’t want to have to start all over, so I kept going. Then, a while later, Alex peeked his head into my doorway. He saw me, smiled, and came into my den.

I guess he thought, If Will can go down and see Mama, then I can, too! “Hi, Alex,” I said. He took that as an invitation. He closed the door behind him and looked carefully around my den. I watched him while I kept working, and let him have his look. I’m just glad I took the cobwebs down first, because he looked everywhere. He’d made his way around my five bookcases and was coming back to take a better look at my desk & table workstation when Mark opened the door.

“I came to get Alex,” he said. He seemed a little surprised to see that I was fine with Alex being in my den. I didn’t bother telling him that, since Alex doesn’t talk, he wasn’t trying to engage me in conversation to distract me from my work.

Alex didn’t need much. He just wanted to be where I was and look at what I was doing. That was enough for him. Then, when I came upstairs and said “Hi” to my mom, I made sure I gave Alex lots of attention. Unfortunately, the rest of the day’s problems weren’t so easy to solve. Sunday was a painful day that forced me to stay up late…again.

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.

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.

Asking the Right Questions

  • Posted on February 10, 2010 at 2:55 PM

Alex, who is predominantly nonverbal, has been behaving in a way that indicates that bi-polar disorder or mania may be an appropriate co-label to apply to him.  While Alex’s behavior is very different from Mark’s, who has a diagnosis of bi-polar disorder, there are certain similarities.  After discussing the matter with one of the few psychologists whose opinion I value and trust, I decided that a mental health assessment may provide useful insights and possible strategies for helping Alex be more comfortable with himself and his environment.

In pursuit of this assessment, I recently filled out a series of mental health questionnaires.  Clearly these questions were not designed to address a child who is nonverbal at the age of ten, which makes me wonder how effective this assessment process will be.  Furthermore, a lot of the questions involved internal mental processes, which there is no way for me (or the doctors) to really observe.  While I understand there is a certain statistical validity and thoroughness to a set of generic questionnaires, there is also a de-humanizing element to this process.  Considering that I had to go through a thorough series of questionnaires to even get this appointment, it seems somehow inappropriate for their data collection efforts to continue to involve questions that are so poorly tailored to my son.  It makes me wary.  Are they prepared to assess Alex at all, let alone provide me with actionable information in response to that assessment?

Then again, when it comes to psychologists, I worry about that in a more generalized fashion.  My interactions with psychology have left me with a deeply in-grained belief that much of psychology is based on unquestioned, unquestionable biases.  One bias is that “different=bad,” which I reject wholly.  A more subtle bias is that observation of behaviors equips psychologists to explain internal mental processes.  Yet, there is something inherently absurd about this bias.  First, mental processes cannot be observed, unless you’re observing the brain at the time—in which case the issue is separating the many mental processes one is observing in relation to the many behaviors that are occurring.  Second, observation is by its nature subjective.  Most of us only observe what we look for, and sometimes we see things we’re looking for when they’re not really there.  Ironically, this absurdity is made apparent through the study of psychology.

Allow me to illustrate:  If someone were to look at my hands, they might think I’m afraid of germs.  This is a logical conclusion from a psychological perspective, because my hands have sustained (and continue to sustain) physical damage from excessive hand-washing.  I have open crevices in my skin which sometimes bleed.  I have scabs over partially healed crevices.  My hands look far older than their 30 years.  Sometimes my skin is so dry and stiff that it looks like arthritis has stolen their mobility.  A common explanation for such a destructive behavior is a phobia, especially when that behavior coincides with obsessive-compulsive disorder (a diagnosis I have).

And yet, my behaviors have nothing to do with germs.  Unless you’re looking for germ-o-phobia you won’t find any real evidence of it.  In reality, as subjective as my personal reality may be, the damage to my hands is the result of a combination of raising young children and having tactile sensitivities that makes touching anything sticky, tacky, slime, gritty, sandy, flaky—well, the list could go on, but I think you get the point—an adverse experience.  So, sure I wash my hands every time I change a diaper or touch the garbage can or sort dirty clothes or pick up miscellaneous things from the floor.  Sure, I wash my hands whenever I sneeze or blow my nose or go to the bathroom or take out the trash.  These are basic sanitary actions.  What makes it excessive is when I have to wash both my hands all over because the side of my finger touched something tacky, like the glue left behind by a sticker that was stuck one too many times.  Or when I do the same thing, because my hand brushed up against something sticky, like the ring left behind by a juice cup.

Perhaps my behavior isn’t rational.  Perhaps it is compulsive.  But, far too many people have tried to label my behavior, both officially and casually, without understanding it.  Yet, when it comes to people doing this to me, I’m prepared.  I’m a highly introspective person and tend to understand myself quite well.  I know why I wash my hands until they literally bleed.  When others throw their baseless speculations at me, I can flick them off with the little regard they deserve.

I’m much more wary when it comes to my children.  While I think I understand my boys fairly well, I’m also insightful enough to recognize that there is far more I don’t understand.  I don’t know how Brandon really feels about being shuffled between two very different households.  I don’t know why Willy feels so comfortable walking up to complete strangers and starting a conversation.  I don’t know what Alex is trying to do when he colors the same drawing furiously for a half an hour, discarding page after page after page and starting again.  I don’t know why Ben closes a book or stops a video at the same part over and over again, yet seems to like that same book or video so very much.  I don’t know these things, and I don’t think their behavior alone can provide genuine insights into the behaviors themselves.  To truly understand these emotions and these actions and all that goes on in-between you have to understand the experience of the individual.  The only way I really know to do that is through communication, but even that is imperfect.  What the other says and what I interpret are and always will be two entirely different things, and this isn’t because I am specifically flawed—all of humankind faces the same limitation.  What I understand and what is meant may be close; my understanding may be sufficient, but these two separate experiences are always going to be at least slightly different.  More importantly, they can be substantially different.

So, as I prepare myself for this meeting I have tomorrow, I remind myself that they may have a greater understanding of the discipline of psychology than I, but I have a better understanding of my child and an appreciation of the limits of that understanding.  For a child who struggles so much to communicate, it may seem natural to rely on interpreting his behaviors to gain insights to his internal processes.  But, these insights are far from perfect and that must never be forgotten.  Last, but not least, as we seek to understand Alex and to help him, we must remember to ask the right questions, because the questions we ask color the experience for each of us.