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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.

Appointment for Worry

  • Posted on July 17, 2013 at 10:00 AM

After Willy had his first major seizure, the one we knew was a seizure, I took him to a neurologist up in Madison. After discussing our family history, I took Alex to the neurologist, too. The neurologist had enough reason for concern to recommend we conducted some additional tests, including a second MRI. At Willy’s last appointment, we canceled Alex’s appointment to discuss the results of his MRI, because the doctor had peeked at the results and declared all was well.

Then, the nurse called and uncanceled the appointment.

Naturally, I was concerned. Was all not well after all? Actually, those who know me better know that I was, underneath a front of my own version of normal, seething with anxiety.

We waited months, of course. We arrived in a rush, of course. Then, to my surprise, it turned out our appointment was never actually rescheduled. It took some persistence with the receptionist, but finally she called the nurse and the nurse talked to the doctor and the doctor, being the conscientious man that he is, agreed to see us.

We met with the nurse, who asked me leading questions. We met with the medical student, who asked more leading questions. I got the impression that we’d missed something, because all those questions were geared toward revealing the changes in Alex’s behaviors that we’d seen.

But, we hadn’t seen any. Alex seemed like Alex, which is far from normal, but it is his own version of normal, so I wasn’t concerned about that! Oh no, what had I missed? What hadn’t I seen? Had I been too busy to notice that something was really wrong with my child?

Then, the doctor came in. I explained why I’m here. He was obviously relieved. He explained what had happened. I was immediately relieved.

The gist of it is this: The nurse was NOT supposed to uncancel our appointment; she was supposed to confirm that the doctor had compared MRI results and verified that there was no significant change to the area of concern and that there was therefore no cause for concern. In short, Alex didn’t need to come back unless we observed significant, worrisome alterations in his behavior. So, obviously, when we showed up for an appointment that didn’t exist, the doctor thought we had observed significant, worrisome alterations in Alex’s behavior.

All that worrying for nothing but a case of the miscommunications! At least it ended with relief.

Anticipating Results

  • Posted on September 19, 2012 at 8:00 AM

I take Willy back to the neurologist today. We should get the results of the video EEG, the MRI, the blood tests, and whatever other observations were made. We already know the diagnosis is epilepsy, but I’ve learned over the last few weeks that this is kind of like an umbrella diagnosis, so it isn’t very informative. There’s a lot more we need to know about what’s going on.

I’ve been doing a little bit of foreshadowing with Willy about the upcoming visit, but I learned from the previous visits there’s such a thing as too much foreshadowing with such things. It’s not that I tried to make too big of a deal about it. I just wanted him to know what to expect.

Unfortunately, knowing what to expect gave him too much fodder to worry over. I’ve done better this time—and the relative successes of the recent visits and the relative ease of the upcoming visit help. He’s not very anxious about the upcoming visit, but he does know it’s going to happen. He’s just not dwelling on it.

Unfortunately, I am dwelling on it. Mark took a call from the clinic, in which they informed him in a vague sort of way (at least, the information that was relayed to me was vague) that they found something on the MRI. Mark compared it to what was found on Alex’s MRI.

The material regarding epilepsy that was provided to me by the Epilepsy Foundation contains a lot of general information about surgical treatment options. And the combination of something on the MRI, the EEG showing seizures starting in one area of the brain and then spreading, and the material I’ve been reading has me worried. Apparently, there’s a stronger push for pursuing surgery early as a treatment for epilepsy.

We’re talking brain surgery here. And my gut reaction is NO! My more thoughtful reaction contains an expletive. In short, I’m not at all comfortable with the thought of anyone mucking about with my son’s brain.

If a medication doesn’t work or if it has too many side effects, you can always stop taking it. There’s going to be a chance that the damage isn’t permanent (though it can be). If you remove part of someone’s brain that’s it. It’s done. If it goes wrong or doesn’t have the anticipated effects, you’re stuck with the results. After all, it’s not like you can put it back!!!

And so I’m worried. And it’s premature. I know it’s premature, but that doesn’t really change anything. Nobody—outside of the literature—has really seriously discussed brain surgery. But still I worry, because, well, it’s his brain!!!

You knew Willy had to get his overdeveloped sense of worry from somewhere, right?

A Little Reminder

  • Posted on March 23, 2010 at 9:02 PM

First, Alex came down with “it.”  The observable symptoms included coughing, sinus congestions and drainage, intermittent fever, lethargy, and vomiting.  Then, Ben caught “it.”  He had the same symptoms.  Now, Willy has it.  And now we know a bit more about what “it” is from the perspective of the one experiencing the malady.

Willy described his initial symptoms as a head-ache.  Then, the vomiting started.  Now, his throat hurts, but his head and stomach seem okay.  He’s also experiencing intermittent fever, like his brothers did.  But he doesn’t have the cough or the runny nose.  So, either Willy has something different, or his brothers had both the cough/cold along with “it.”  The latter seems most likely.

While this is a relatively simple example, one of the most difficult things involved with parenting a child who experiences a communication barrier is this inability to really communicate when something is going wrong with them.  There are certainly much worse examples.  A child who is being bullied can generally talk about it (whether or not they will is another issue), but a child who experiences communication barrier cannot do so or cannot always do so.  This creates a chronic worry.  The same is true for other forms of abuse.  Unless there are identifiable physical markers we just don’t know what to suspect and so that nagging worry remains a constant in the backs of our minds while we do everything we know how to do to keep our children safe.

I often hear parents mourn their child’s inability to tell them that he or she loves them.  While I appreciate the significance of the words, children can communicate this in many ways.  Hugs and kisses, the recognition in their face, and other forms of connection are proof that my two primarily non-verbal children feel and express love.  For me, the possibilities of illness, injury or abuse are much more profound.  Sometimes they can find ways to communicate these things; but often the means of communication are inadequate.  “Acting out” is a warning sign, for example; but it’s a warning sign for so many things.  Unless you can find facts, sometimes you just don’t know and there is no way for them to tell you.  And that’s what I consider the scariest thing of all.

These minor illnesses are just a reminder.  As if I could ever forget.