You are currently browsing all posts tagged with 'epilepsy'.
Displaying 1 - 10 of 19 entries.

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.

The Counseling Angle

  • Posted on December 13, 2013 at 10:00 AM

I’ve never been much of one for counseling. I’ve tried it for depression. I’ve tried it when Mark and I were working our way through a rough marital patch. I’ve also watched Mark go through counselors until he found one he more or less clicked with. It’s hard finding the right person, and sometimes there just aren’t enough options.

After Willy started having seizures, he struggled to cope with them. The seizures destabilized his moods and made him prone to irritability. When he started taking anti-seizure medication, we expected his moods to stabilize, too. Instead, his moods got worse. In a moody fit, Willy wrote us a very scary letter that expressed suicidal feelings without suicidal ideation.

Mark is diagnosed with bi-polar disorder. I’m diagnosed with depression. We know way too much about emotional imbalances to let something like that slide. I made an appointment with Willy’s pediatrician, showed him the note, and asked for a referral. Actually, I didn’t have to ask for the referral, because the pediatrician offered me a referral before I got the chance to ask. Of course, Willy’s doctor was well-versed on Willy’s autism and epilepsy diagnoses, so he knew we’d need someone with special skills. He had just the person in mind.

When I made the call, I explained the complexities of our situation to the receptionist and asked for an appointment with the person Willy’s pediatrician recommended. It turned out that the person our pediatrician had in mind was a psychiatrist. The receptionist confirmed that she would be the very person she would recommend for a family in our situation, if we needed a psychiatrist. The receptionist recommended, however, that we start with a psychologist. She selected one based on our criteria and we scheduled our initial appointment.

Willy’s counselor turned out to be a great fit. She was easy for me to talk to, which is important because I’m the one who has to explain the complexities of our family dynamics. She’s also easy for Willy to talk to, which is even more important because he’s the one she’s trying to help. She has a solid understanding of autism, a good understanding of epilepsy, and a fabulous understanding of how special needs and adolescence can collide.

During our next neurology appointment, I showed the same letter to the neurologist. I talked about the counseling and I also talked about my discovery that mood instability and depression were a side effect of the prescribed medicine. After discussing our options, the neurologist recommended that we try a supplement called B6 before we considered changing Willy’s prescription. We were very lucky to find a medicine that eliminates Willy’s seizures with such a low dose and there’s no guarantee that another medicine will have the same results. In his experience as a neurologist, B6 had helped several patients with such side effects, though there wasn’t a documented medical explanation for it.

I can’t tell you how much of the transformation is due to the B6 and how much is due to the counseling. All I can tell you is that Willy is doing much, much better. It’s going a bit far to say Willy’s mood is stable, because he is, after all, a teenager. But he’s not depressed and his mood instability is not abnormal in its frequency or its severity. While we’re not ready to stop the counseling sessions quite yet, we’re focusing more on skill-building than on damage control. The hope is that, when we’re done, Willy will be better able to cope with life without the safety net of counseling, though we’ll continue the supplement.

Purple Pumpkins

  • Posted on October 25, 2013 at 10:00 AM

Alex went on a field trip to a farm, which is one of his favorite field trips during the school year. He came back with a pumpkin. Mark told me about the Purple Pumpkin Project. You paint your pumpkins purple to raise awareness about epilepsy. Then, Mark’s parents brought us four more pumpkins that my nephew sent for his cousins. Mark wants to paint them all purple. Or, perhaps, it’s more that Mark wants them all to be painted purple. I don’t know that he actually wants to do the painting, but he’s accepted that responsibility.

I hope to have a picture for posting soon.

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.

Epilepsy: The School to Summer Transition

  • Posted on June 19, 2013 at 10:00 AM

This school started with some big news: Willy was diagnosed with epilepsy, another neurological disorder to go along with his autism diagnosis.

Willy was a lucky kid when it comes to his epilepsy. The doctors’ first guess at which medicine would control his seizures was correct, and the dosage he needs to maintain control is relatively low. Now that 2013 is almost half over, I’m glad to say that he has been seizure-free throughout this calendar year. Many people with epilepsy aren’t so lucky or so easy to treat.

A big part of the success of this treatment, however, involves Willy remembering to take his pills in the morning and the evening. He needs both doses. He needs to remember every day. This is important.

It’s also easy to forget. When you feel sick, it’s relatively easy to remember to take your medications. When you don’t feel sick, it’s easy to forget. Willy hasn’t felt sick in many months, which is a really long time for him.

I was worried that the change in routine would mess things up. After all, Willy’s pill-taking revolved around his school schedule, and changes to that schedule tended to mess things up during the school year.

I’m happy to report that Willy has made the adjustment almost completely independently. He takes his morning pill when he wakes up, whenever that happens to be, and he takes his evening pill before he goes to bed, whenever that happens to be. He’s needed few reminders. He’s exercising almost complete independence.

I’m so proud of you, Willy! Great job!

2013: Where the Boys Are

  • Posted on January 7, 2013 at 9:00 AM

So, to start off the New Year, let’s take a quick look at where the boys are now and where I hope to see them going in the coming year.

Willy: Now

  • Willy is in last year of middle school.
  • His medication seems stable and his seizures are under control.
  • His mood is not stable and we’re looking into treating him for depression and/or anxiety.
  • Willy has some dreams of what he wants to do as an adult, but we haven’t made any concerted efforts to ensure he’ll be able to pursue his dreams, other than providing him with necessary accommodations to access his scholastic curriculum.

Willy: By Next Year

  • By this time next year, Willy will be in high school and I plan to make the transition as easy and successful for him as we possibly can.
  • I hope we can keep his seizures under control.
  • I hope we can stabilize his mood and help restore his self-confidence, his sense of self-worth, and his enthusiasm for life.
  • I hope we have a plan in place that will enable him to pursue the dreams he has for his adult life.

Alex: Now

  • Alex started middle school this year and seems to be adjusting reasonably well.
  • Alex is going to be assessed for possible seizure activity.
  • Alex will be assessed for assistive technology to help him communicate more complex feelings and thoughts.
  • Alex’s weight, eating, and growth are becoming worrisome again.
  • I have no idea how to help prepare Alex for life as an adult, but I believe that pursuing his art is a worthy goal and have been making small strides in getting him more exposure to art mediums.

Alex: By Next Year

  • By this time next year, I hope that we will have been able to meet Alex’s health-related needs, whether that means treating seizures or other neurological conditions and/or getting him back to the Feeding Clinic (if we can’t get his weight up and steady soon).
  • I hope to have a communication system in place that will empower Alex to communicate what’s going on in his head successfully.
  • With the communication component in place, I hope to begin discussing with Alex (instead of trying to decide on his behalf) what he wants his adult life to look like.

Ben: Now

  • Ben moved to a new elementary school this year to be placed in a program (special education environment) that was supposed to better meet his needs, yet we’re seeing a very similar cycle of escalation that shows us (at least me) that his needs are not being met.
  • Ben’s communication skills seemed to be developing at a quicker pace earlier this year, but now he seems to be sliding back into some of his more non-verbal habits.
  • Ben’s weight and health seem to be good overall, and even his sleep cycle is becoming more normalized.

Ben: By Next Year

  • By this time next year, I hope that we have, as a team, figured out what all of Ben’s educational, sensory, and behavioral needs are and how to meet them.
  • I hope to get his aggressive behaviors under better control by meeting his needs.
  • I hope we can get his language development and learning back on track.

So, that sounds like a lot. These are some pretty big issues to deal with, but I think with concerted effort and a supportive, capable team for each child, we can reach these goals and discover new and better goals to meet along the way.

Epilepsy Awareness: The Buzz Word is Control

  • Posted on November 8, 2012 at 10:57 AM

So, November is Epilepsy Awareness month and, apparently, the color is purple. Well, I think I’m covered there!

At this point in our epilepsy adventure it’s all about control. Last time we went to the neurologist, he upped Willy’s dosage of Trileptal. Since then, Willy has had only one seizure (that I can remember being told about) and it was after he missed a dose. I’ve gotten him a fancy pill box that holds a whole week’s worth of pills, with boxes for both morning and evening doses and with extra boxes if he gets mid-day doses added to his medication schedule.

It may be too soon to feel so confident, but I think this medication and this dosage will continue to be successful with seizure control. Willy has enough medicine in his system now that even if he does miss a dose it doesn’t automatically mean he has a seizure. Though, I’m getting better about checking to make sure he doesn’t miss a dose and he’s getting better about remembering to take his medicine so he doesn’t miss a dose. None of us want to take that chance.

While controlling the seizures is a major victory, other issues of control have arisen. I recently attended an IEP for Willy. We discovered that the periods when Willy’s anxiety and depression-like symptoms have seemed to get better at home, they’ve gotten worse at school, and vice versa. So, there’s not a reduction of anxiety. It’s simply being displaced between his different environments. Along with the anxiety and depression, we’re seeing decreases in his self-control and impulse-control. Now, after two years of not needing one, we’re going to have to create a behavioral intervention plan for school.

Unfortunately, there are too many unknowns. Is the re-emergence of these behaviors and the increase in emotion instability a result of the onset of epilepsy? Is it a side-effect of the medication? Is it the result of puberty? Is it a combination? Or is it its own thing? To try to get answers and help, we’re going to seek out a therapeutic psychologist with experience with children with autism and we’re going to try to make sure the psychologist, the neurologist, and the school can work together effectively.

On the up-side, bullying no longer seems to be an issue.

Our Hidden History

  • Posted on October 26, 2012 at 8:00 AM

In an effort to prepare for Willy’s appointment with the geneticist, I pulled the major records from all three boys’ medical files. Each packet of documents in these old files corresponds with a story point on the memoir I’m writing, but I hadn’t pulled any of them yet. For a while, I just re-read what had been said and what had been determined. I spent a little longer on Ben’s, because getting an accurate diagnosis was a bit more difficult with him. I thought about the moments and the hardships that had gone along with each of those packets of papers.

Reading them again, I was surprised at the hidden prejudice I saw so clearly. Alex, who is the most severely autistic of my children, was diagnosed with PDD-NOS, not autism. Though his verbal and nonverbal communication delays are extreme, he’s more socially-inclined than expected of an autistic individual. His ability to engage socially is impaired, but his desire to engage socially (with adults) is not. For this reason, he did not meet the criteria of autism.

As time has passed, as their skills have improved, neither Willy nor Ben showed this dramatic decreased desire to socialize that was expected of Alex in order to obtain an autism diagnosis. Their ability to socialize is impaired, and this ability is impaired in some different ways than Alex’s is, but the desire is there and it has always been there with all three boys in one way or another. Just not the “normal” ways.

One thing my husband and I learned early on is that if we wanted to engage our children in a social way, we’d have to do so where they are, which wasn’t where we’d expected them to be and it certainly wasn’t where we were. So, we adapted. With Willy, we were able to adapt the most successfully, because we could understand what motivated him. With Ben, we were able to adapt with moderate success, because we could understand enough of what motivated him to do so. With Alex, we’re still trying to figure out what motivates him. We’re still adapting. He’s still very much where he is, and we have to come to him to make the connection—but sometimes he just seems out of our reach.

The motivation is there, but with such a severe communication disability, we can’t quite make the fully satisfying connection that Alex craves.

The possibility exists that part of the reason that Alex struggles as much as he does is because he’s having seizures that we’ve failed to recognize. Until we saw this neurologist, the possibility of seizures—of Alex having seizures “now,” instead of developing them later—was never mentioned. He was never tested for “hidden” seizures, because we didn’t know that he should be. The more I read about epilepsy, the more I wonder: Is this the missing piece? Is this the key?

We won’t know until after a few more appointments—one for the initial evaluation and one for the video EEG and one for the post-evaluation, and possibly more in between—the first of which has been scheduled for early December.

Flipping back through these packets of information, I read the doctors’ words and there are passages that slap me in the face. These assessments that we endured to get where we are now were wrought with prejudice: Everything about them is underwritten with the assumption that it is wrong to be autistic. And what’s worse, the answers these assessments provided might not even be enough.

Since almost the beginning, I recognized my children as neurologically different or neurodiverse, and yet it’s only within the last few months—with the onset of epilepsy—that I’ve taken any of my boys to a neurologist. Always, it’s been psychologists. When I define autism for publication, I start by referencing the DSM-IV, a psychology manual. Throughout this time I’ve been suspicious of psychology, of the nature of the discipline, of its start with Freud, of its connection to eugenics, of its overzealous classification of “disorder.” And yet, here I am, realizing with not a small bit of guilt, that I’ve been enabling them to define autism for my children, for my family, and even for my writing. I’ve been enabling them to define, despite my resistance, the nature of my children’s being. I’ve been enabling them to set value (rather, lack thereof) on their worth.

I can justify it. The neurologists were always too difficult to get to. The referrals were always for psychologists. The system funneled me in this direction, and to get my boys’ the services and accommodations they needed I had to work within the system. I know why I did what I did.

But it all sounds hollow now. Empty. Mistaken and misguided.

What if, this whole time, Alex was having untreated seizures? What if treating those seizures empowers Alex to make the connections that have so long eluded us all?

Whether that’s true or not, I can’t help but feel that, despite my best efforts, I’ve failed my sons.

Writing in Anger

  • Posted on October 22, 2012 at 8:00 AM

There’s a fine line between passionate persuasion and outright anger. In the blogosphere, we often cross that line with ease. There’s no censor. There’s precious little moderation. I know, in this realm, I’m far from the angriest of writers who write about autism and neurodiversity.

Lately, however, I’ve been doing a lot more professional writing. Seeking a wider, more diverse audience requires a moderation of tone. Luckily for me, I have a co-writer on some of my projects who doesn’t hesitate to tell me when I’m writing from an angry place. He’s even gone so far as to say that I don’t sound like me when I’m angry.

There’s part of me that wants to stubbornly cling to my anger. I feel as if I have a right to be angry. Considering some of the injustices we’ve faced, I’d even go so far as to say I’d earned it. But that’s not even the point. Whether I have a right to or not, I am angry.

But, when it comes to my writing and what I’m trying to accomplish, my anger doesn’t really do much good.

Then again, there are times when anger has its place. Those pieces are shorter and for a more select audience (which is part of the reason it works so much better on a blog). It just takes knowing when and where to unleash it and when and where to keep working at it until I can produce the content I want with a moderate tone.

The fight for justice will not be won with anger alone, but anger does have its place. You just can’t get stuck there.

Where the Footprints Lead

  • Posted on October 15, 2012 at 8:00 AM

Adolescence, epilepsy, and the onset of bullying: Willy’s got a short fuse. I understand this. I appreciate this. But, at the same time, it’s getting frustrating. My lovely, empathetic, wonderful little boy has become something of an explosion-waiting-to-happen. Anything can become a match that lights his fuse, and his fuse is short indeed. TriggerBOOM! With very little time lapse.

Recently, for class, I relived that Friday when Willy had his grand mal seizure. Though I didn’t intend it, my teacher came away with the impression that my story showed how much I wanted to take my son’s pain unto myself.

I can’t.

I know I can’t.

I have a mug that I use as a penholder (because the coffee would get cold before I could finish if I used it as a mug):
“During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you.”

The lines are from the poem “Footprints” (of disputed origin), which my mom knows I love, which is why she bought me the mug.

As much as I want to take these hardships from my son and let him once again find his full-time joy, I can’t. I know I can’t.

And I know, though my son has a lovely faith in the Lord, that even He won’t simply take away these hardships—any more than he “takes away” my own.

We just have to follow where the footprints lead and support each other as we find our way through the hardships of our lives, even when it feels like we’re walking quite alone in this world.