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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.

Back to the Genetics of It All

  • Posted on September 21, 2012 at 8:00 AM

So, as I said, it was premature to worry about saying “NO!” to brain surgery. It’s not going to happen. Even the doctor doesn’t think it’s a good idea. Yay! On the other hand, it means Willy will probably be on anti-seizure medication for the rest of his life. So, there’s that.

I learned quite a bit from this visit. First, I learned that all the seizure activity recorded by the EEG started in the same spot in Willy’s brain and that they also saw spikes in this location even when the spikes didn’t become seizures. After a seizure started, it became generalized throughout Willy’s brain. Second, I learned that several anomalies were identified in Willy’s MRI. The main one concerned his ventricals, which are structured atypically so that they “leak” cerebral spinal fluid into a part of the brain that isn’t common. Near this site, there are also “extra” folds in Willy’s brain. And, Willy also has a cyst that is not considered significant.

This data has led Willy’s neurologist to suspect that there is a genetic factor, so Willy will be seeing a neurogeneticist to see if we can learn more. Identifying a genetic cause may just be a “point of curiosity” that does researchers more good than it does us, but it may also indicate other associated anomalies to watch out for, like heart conditions or something.

Due to the possibility of a genetic factor (which may or may not be hereditary), the neurologist is also concerned about Alex. There is a possibility that Alex experiences subclinical seizures that we don’t know how to identify, so I’m to get his pediatrician to refer Alex to the doctor and the doctor is going to order Alex’s MRI to see if there are similar anomalies that the other doctors missed because the ones identified on Willy’s MRI were subtle and because Alex’s doctors weren’t looking for it.

While I’m not overjoyed at the possibility of 24-hour video EEG round two, I realize that it would be better to catch any seizure activity earlier rather than later. I also read an article that suggests (though the article admitted the data was insufficient to be conclusive at this point) that treating children who have autism and who also have irregular EEGs, even when they don’t have observable seizures, can improve the child’s quality of life, including their autism symptomology. An extreme example was a child with autism who was non-verbal before starting seizure medication, but who was able to use verbal communication afterwards.

All in all, it was a lot of information delivered in a relatively short amount of time. We’re all still processing what this means.

EEG: Round 2

  • Posted on August 8, 2012 at 8:00 AM

So, we went to see the neurologist and I must say I was impressed—and that can be pretty hard to do when it comes to providing services for my kids. This is not to say, however, that I was pleased.

Getting there involved a lot of anxiety on Will’s part and none too little on mine, though for different reasons. (I’m not so good with going places I’ve never been before.) When the neurologist came in, the first thing out of Will’s mouth was “What language are you speaking?” To which the neurologist replied good-humoredly, “English,” in a rather pronounced Asian accent. I admit I cringed with that one.

His accent, however, did not impede our ability to communicate with one another, and the appointment proceeded at a rather rapid pace, with me providing information that was (for the most part) already in the questionnaire that I’d filled out, which he didn’t take until the end of the appointment.

The sum result of the visit is that he can’t diagnose Will yet. This is where the disappointment comes in. However, the reason is because he doesn’t have enough hard data, which is what impressed me. I guess I’ve just spent too much time listening to psychologists, for whom behavioral data is THE data, so I’m not used to actually needing conclusive tests.

And so the long story short is that the first EEG was not conclusive. The neurologist is not satisfied that epilepsy has been ruled out, though he did talk about the possibility of “frontal lobe seizures” without explaining the implications—he wants to know what we’re dealing with before he leads me down any rabbit holes (my phrasing, not his).

So, we’re going back tomorrow to have a video EEG which may require an overnight stay. The goal, once again, is to actually record a seizure event and we’re going to stay until we do even if it means staying overnight, which Will and I would rather not do for a whole host of reasons.

Wish us luck!


Thoughts and Well-Wishes

  • Posted on August 3, 2012 at 8:00 AM

First, I’d like to thank you all for your positive thoughts, comments, and well-wishes for Willy. For those of you who don’t know, he’s going through a tough time now. Shortly after summer kicked into full swing, Willy started having mini-seizures that we didn’t recognize as such at first. Then, when we went up to Colorado to visit my brother, he had his first grand mal seizure. Since then, these mini-seizures (which a little birdie has told me are called “walking seizures”) are happening with more frequency—we’re up to 3 to 5 a day now—and more intensity.

As you might imagine, Willy is scared. His anxiety is through the roof. He wants it to stop. And he’s praying for God to make the seizures stop and is asking others to join him in his prayers.

He also wants people to know that we tell him about the positive thoughts, comments, and well-wishes people are sending his way, and he’s very grateful for them. He’s cried “tears of joy” to know so many people care.

Thank you all, and please keep them coming!


  • Posted on July 6, 2012 at 8:03 AM

Willy chose sooner, rather than later.  So, he went to bed right around his usual time.  Four hours later, I woke him up.  The three primary pre-EEG conditions were 1) four hours of sleep maximum, 2) no caffeine, and 3) clean hair.

The EEG wasn’t scheduled until 10 am the next day, so those eight hours of forced wakefulness were pretty rough.  Willy kept trying to go to sleep on me, but I couldn’t let him.  Willy told me he didn’t want an EEG after all, but that wasn’t a choice.  He said he wanted to heal his seizures all by himself and I told him “That would be wonderful, but we don’t know how.”  He said, “Well, I wish I had magic, then.”  I said, “You know, so do I.”  He folded his arms across his chest, harrumphed at me, and flounced away.

At this point he was more grumpy than anxious, which was something of an improvement.  At his doctor’s appointment, I’d used the pain chart to ask him how anxious he was.

He chose number 9.  He was scared that the doctor was going to send him to the emergency room and that he would die there.  I’m not sure where this came from, since his own emergency room visit went relatively well.  We reassured him, of course.  I did.  The nurse did.  The doctor did.  But Willy was unconvinced.  I drove him by the hospital the next day, showing him the big hospital and the (relatively) small emergency room wing, and showing that we’d be going to the big hospital for his EEG.  I found a YouTube video of an EEG and we watched it together.  We talked about seizures and EEGs.  All told, these efforts reduced his anxiety from a 9 to a 7.  Being sleepy and grumpy trumped anxiety and brought him down to a 5.

Seven and a half hours of grumpiness later, it was time to go.  We drove to the hospital, avoiding the entrance that shows the big red EMERGENCY ROOM sign.  When Willy got inside, he was in hypersocial mode, trying to introduce himself and chat up everyone in the waiting room.  I had to caution him against stepping in front of people who were in a rush to actually get some place, but otherwise I tried to let him do what he needed to do to make himself feel better.

The best part was when Willy introduced himself to two gentlemen who were talking in the lobby.  I knew who they were—rather, I knew what their function was—but Willy had no clue.  So, when the receptionist asked one of them to take us up to the next waiting room, Willy was shocked (imagine a cartoon-style performance, with bug eyes and dramatic gestures) and said, “I just met you!”  So, we explained that the gentleman was a volunteer who made sure people got where they needed to get when they needed medical care.  That eased Willy’s anxiety quite a bit.

Then, of course, there was the waiting in the waiting room, and that’s never good.  But finally, we got to the appropriate room, met the very nice and understanding sleep technician, and spent quite awhile getting Willy hooked up.  Getting him hooked up took longer than the actual EEG.  Even getting him unhooked took longer than the EEG, but the hooking up took longest of all.

She started with a wax pencil and a tape measure, making marks in the shape of plus signs to indicate where the electrodes should go.  Then she “erased” the center of each plus sign using an exfoliant, which she called a “scrubber” for Willy’s benefit.  Then, she gooped up the electrodes and stuck them on, placing a bit of cotton over them to hold them in place.  I didn’t count how many wires she used, but there were lots of them.  Finally, after all the electrodes were in place, we were ready to go.  She dimmed the lights.

There was a lot of closing and opening of the eyes, without strobes, then with strobe lights, then with progressively more “aggressive” strobe lights.  (I don’t react to strobe lights, but even I felt they were aggressive.)  Willy had a hard time complying.  At first, it wasn’t a problem, but towards the end of the strobe light session he wouldn’t keep his eyes open because “it’s messing with my brain.”  Willy was not at all comfortable with the idea of actively triggering a seizure, even with the technician and me right there with him.  Later, when it was time to try to sleep while hooked up to the EEG wires, Willy was especially uncooperative.  He feigned sleep, but he resisted actually letting himself sleep.  Even afterwards, he wouldn’t let himself sleep.  So, I can’t help but thing that, whether it’s conscious or not, Willy has some self-defense mechanisms against triggering seizures.

So, I’m not sure how productive the whole thing was.  I’m hoping they could see enough to tell if they had found what they were looking for even though they did not trigger a seizure, but the technician wasn’t allowed to indicate the relative success of the EEG.

However, a little birdie did confirm that the minor fugue episodes we’d been seeing were examples of seizure activity.  After the grand mal, I’d been working under that assumption—not that there’s anything I can do about it at this point—but the birdie confirmed it.  Like the technician, however, the birdie is not a neurologist, so it’s a birdie, because birdies can’t get in trouble for passing along information that’s above their pay grade, I mean medical qualifications.  Still, I trust the birdie.

Now that this part is over, Willy’s a lot less anxious, even though nothing has actually been resolved.  He’s still clinging to both Mark and I and he still needs a lot of emotional support, but his anxiety levels aren’t hovering around 9 anymore.  Now, it’s back to the waiting and the hoping that there will be answers that give us the power to do something.