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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.

Kids Learn to be Cruel

  • Posted on September 24, 2012 at 8:07 AM

Last year was a great year for Willy. It was so great, in fact, he didn’t want to give it up. He didn’t want to give up his fellow students and friends. He didn’t want to give up his teachers and classes. He didn’t want to give up being a seventh grader. And he wasn’t even changing schools!

Then, came this summer. I didn’t want to think of the summer as a portent to things to come, but here were are, creeping to the end of September, and Willy’s “great” has gone, gone, gone.

This isn’t the year of great. This is the year of epilepsy. This isn’t the year of wonderful. This is the year of bullying. And I’m tired of it already.

For many years, I’ve been reassured that Willy is well-liked by his peers. He was happy to go to the school (most of the time) and he was happy at school (most of the time). But all that has changed. Willy is under attack.

That may sound extreme, but I assure it’s not. Willy is being ruthlessly and cruelly teased by people who used to accept him (or pretended to), but have now decided (if it was a decision) that they can build themselves up by tearing him down (if that’s their motivation). In short, he’s being bullied. He’s being bullied about his glasses, about his coordination, and about his speech. I suspect other aspects of himself are being attacked, too, but like most kids, Willy isn’t particularly comfortable talking about it.

That’s a change, too. I get to watch my child “shell up” and lash out. I get to see his moodiness skyrocket at a time when he’s already struggling with difficult emotions surrounding his epilepsy. So far, I don’t think the bullying and the epilepsy are connected, but it’s hard to be sure.

Whatever is going on, it needs to stop. Every child should be safe at school. They should be safe from their teachers and other service providers. They should be safe from their peers. If they’re not, there’s a problem and the school has a responsibility to address it. I’m in contact with the school, and so far they’re taking it seriously. But it hasn’t stopped. On Thursday, I go in concerning another matter. If I haven’t seen drastic improvements, then Mama Bear will be showing her claws and demanding action.

Kids learn to be cruel. They can learn not to be cruel. Cruelty in our schools should NEVER be tolerated. It needs to stop!

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.

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?

The Ideal IEP Meeting

  • Posted on September 5, 2012 at 8:00 AM

So, what would the ideal IEP meeting look like for you? Would you get everything you asked for? Everything you wanted? Or would the team collaborate—discussing your child’s needs and how the school could help meet those needs—to determine what was best for your child?

How about both?

To be fair, this meeting was simply to revise Willy’s IEP to address the needs raised by his new diagnosis of epilepsy. We did not revisit goals at this time. We simply discussed his new needs and how to accommodate those needs. Even so, it went surprisingly well!

Lately, I’ve been working with a co-author on a book about special education. I have also been editing his book on IEP collaboration. I’ve learned a lot working with him, and I’m confident I have taught him a lot as well. It’s a very fruitful, effective partnership (though, not in the traditional, legal, business sense of the word).

I brought that knowledge to bear as I prepared for this IEP. I even brought along two advocates—one especially familiar with Willy and one especially familiar with epilepsy. I was prepared to negotiate. I was prepared to advocate for my son’s needs.

And I did—no negotiation needed. I was simply “given the floor.” I explained what has happened over the summer, what I knew Willy needed, what I suspected would be beneficial, and that’s what was the team agreed to do. There was a lot of discussion, but it was collaborative and productive and focused entirely on Willy’s needs—including the training the staff would need to meet Willy’s needs.

The meeting went beautifully!

Afterwards, I thought a great deal about how that happened. The “training” I’d received by working with my co-author had certainly enhanced my advocacy skills—and I’m going to provide him with a quote for his book to that effect. But, as much as my modesty would like to give him all the credit, I also have to acknowledge that there was a lot of solid groundwork that made this possible.

You see, when I go into an IEP meeting, my focus is on my children. This means that I don’t always get what I want or even what I think is right. Instead, I work with the trained professionals to get (to the best of our ability) what my children need. Some battles are longer than others—and feel very much like battles—such as the years it took to convince school staff (in thought, word, and deed) that neither Alex nor Ben were/are intellectually disabled. (Again, there’s nothing wrong with being intellectually disabled, aka retarded; but there is something wrong with assuming that a child who cannot talk is intellectually disabled and there is also something wrong with providing inappropriate services because of such an assumption.) Some battles aren’t battles at all, like graduating Willy from a one-on-one aide to a team-teaching environment. The point is, if you start with your child’s needs, then discuss how to meet those needs, and finally ensure that the services provided satisfy those needs, well, sometimes you don’t like what you get, even when you get exactly what your child needs.

I didn’t like the idea of Ben switching schools in the middle of his elementary school education. But, as the year starts and I’ve had a chance to meet with his new teacher and help prepare everyone involved for the transition, I’m confident it’s the right choice for Ben. Ben’s needs will be better met at the new school and that’s all that matters.

When you go into an IEP meeting with that attitude, when you work with staff to achieve those ends, then you build a reputation in the school district and you build a relationship with the school staff. When you provide useful input and make reasonable recommendations—versus asserting your opinions as facts and making unattainable demands—you build a foundation of trust. You respect the professionalism of those on your child’s team and you show your own “professionalism” as a parent and as an advocate for your child.

That groundwork made this ideal IEP possible. The case manager trusted me to provide useable information to the IEP team and to make reasonable recommendations. In this case, they had more questions than answers, and my answers (and the answers provided by the advocates I brought to assist in providing answers) were respected and trusted. That trust empowered them to accept all the recommendations we proposed and to propose recommendations of their own that would completely accommodate the needs we identified. We worked together, collaboratively, with Willy’s needs in mind.

In a few months, when his baseline is re-established with a new, comprehensive three-year evaluation and we sit down for a full-blown IEP meeting, things might change. By then, we’ll know more about how Willy’s epilepsy effects his education. But, for now, we’ve done all we can and we’re confident Willy’s going to have a great year!

Medicinal Improvements

  • Posted on August 27, 2012 at 8:00 AM

So, I’ve devoted quite a few posts to the video EEG. This is the last one, though it’s less about the EEG and more about the consequences.

It may seems hypocritical, considering that I’ve so adamantly resisted medicating the boys for their autism, but my main hope throughout this process was getting a medication that could reduce or eliminate Willy’s seizures. You see, autism and epilepsy is not the same thing at all. In my experience, medication for people with autism is usually recommended because autistic behaviors impact the lives of others in ways they perceive to be negative. (There are certainly exceptions to this.) When it comes to epilepsy, however, the medication is recommended to address a medical condition that impacts the quality of life of the person experiencing the seizures. In my opinion, that is the purpose of medication: Medication should help the person who is taking it, not help other people “manage” the person who is taking it. Of course, there are exceptions to this, too, especially in the case of severe mental illness in which the person becomes a danger to themselves or others, but again, that’s not what I’m talking about here.

My point is this: My goal was to get a prescription for medication that would reduce or eliminate Willy’s seizures, so he could get back to his own normal. I’m happy to say that the doctor’s first try was something of a success. The first medication works well, though not completely, and the side-effects have thus far been minimal. Not only have we gone from 3 to six seizures a day to 3 or 4 seizures a week, but Willy’s tiredness and moodiness have dramatically decreased as well. There’s still some fine-tuning to do, and it might require an increase in the amount of medication he takes, but we’re making good progress.

EEGs and Glue in Hair

  • Posted on August 24, 2012 at 8:00 AM

Before I move on from the rather momentous experience of the video EEG, we need to talk about glue. See, a 24-hour video EEG involves gluing electrodes onto the person’s head. And then, when the person tears off those electrodes during a seizure, there’s more glue. Willy had three layers of glue on his head. Cleaning it off wasn’t easy.

So, here’s a quick how-to lesson:

  1. If it is at all possible to buzz the child’s head, even if that’s not a style you’d prefer, before the video EEG, then do it. It’ll be worth it! I know, because we didn’t.
  2. If it is at all possible to convince the child to leave the electrodes on, do it. I suspect multiple layers of glue are worse than a single layer of glue.
  3. Before you start to clean the glue out of the child’s hair, assuming you failed in step 1 and step 2, be sure to have a comb or combs of varying fineness. This refers to how close together the teeth are.
  4. If the staff haven’t already done so, start by getting your child’s hair wet with a little bit of water and a lot of baby shampoo—the kind that loosens tangles without tears.
  5. Then, without washing out the shampoo, comb a small section of your child’s hair close to the scalp with the widest-tooth comb. You do this to pull up the glue “scabs” from your child’s scalp.
  6. The “scabs” will fall apart as you comb them out. Get as much out of your child’s hair as you can with the wide-toothed comb, rinsing the glue from the comb frequently.
  7. Then, use the narrower-toothed comb, again rinsing the glue from the comb frequently.
  8. Repeat these steps all around the head until you stop getting glue up with the comb. This will take at least a half an hour, probably longer.
  9. Then, rinse out the baby shampoo thoroughly. You’ll see even more flecks of glue.
  10. Then, starting with wet hair, wash (or have your child wash) the hair as normal.

It’s a lot of work getting the glue out, but you don’t want to leave it in to re-dry—because that’s even worse.

Video EEG: An Experience—Part 3

  • Posted on August 20, 2012 at 8:00 AM

So, I woke up at 5:20am on Friday morning. Luckily, Willy still slept. I poked my head out of the room, called for a nurse, who came in to watch Willy while I had a cigarette. Ah, nicotine addiction. It sucks, but I haven’t been able to kick the habit yet.

Willy woke up some time after I returned, and had a breakfast of an apple and milk (which I ordered for him from room service) and carrots (which I’d brought with me). Everyone commented about how healthy he ate. As for me, I had brought a yogurt drink and smoothie, and I drank both up, wishing I could get some protein into Willy in the mornings, but that’s just not going to happen.

By 7am, I needed another cigarette and the doctor wasn’t expected for another hour. I went through the warren of hallways and such, and for the first time I didn’t get lost on the way there or on the way back. Nice! When I got back to Willy’s room at 7:20am, the doctor was waiting. Oops!

Oh, well. He repeated everything we’d talked about, filling in a few blanks, and made sure I knew the plan of action we’d be following over the next few weeks. He also told me it’d take about two weeks before he could produce the full results of the EEG. Then, he said that we needed to give Willy his morning pill, get the gunk out of his hair, get checked out the by lead doctor and the string of interns, and then the nurse would discharge us. “You’ll be going home soon,” he said to Willy.

And here is my one point of criticism: “Soon” is a very bad word to use with a literally-minded person. See, as an adult, I know “soon” is relative. But even I struggle with the misuse of “soon.” Willy is not an adult and he struggles to reign in his overly-literal thinking when interacting with less-literal people. See, to Willy, “soon” means in a few seconds—a few minutes at most. An hour cannot be “soon,” no matter the relativity of one hour compared to 24. No, an hour is definitely not “soon,” and it is most certainly not “soon” when it’s for something—like going home—that you’ve been begging for.

So, while Willy clung to the word “soon,” getting more and more upset as “soon” seemed to get further and further away, I clung to the list of tasks that needed to be completed. Doctor and string of interns came in and did their thing. Check. Technician came in to remove electrodes and started the process of cleaning the glue from Willy’s hair. Check. Finally, the nurse came in to administer medication. Check. So, we get to be discharged now, right? After all, Willy had been weepy and whiny for the last hour and a half, waiting for “soon” to be “now.” So, now that we’ve completed the checklist, do we get to go?

Ah, no. See, the pharmacist needs to come. Why? To tell you about the medication. But the doctor already told us about the medication—twice. Once the nurse gives us our discharge papers, we’ll have a paper record of the details about the medication. But, the pharmacist has to come to tell us about the medication. Okay, fine—when? It’s hard to say.

So, for the hour and a half Willy was miserably awaiting “soon” and I was the rock, calming him down. Then, after this, Willy gets calm and I start to melt down. I’m trapped in a tiny hospital room (see how it’s shrunk from “small” to “tiny”) with a child who just wants to go home, we’ve done everything we were told we had to do, we’re packed and ready, and now we’re waiting for someone who has never met my son to tell me about the medication the doctor prescribed, who had already explained the medication and the plan of action and had not only met my son but had been treating him all night long and the medication had already been started and what the hell was this guy supposed to know that the doctor didn’t! So, we waited another half hour for nothing. Repetition—unnecessary repetition.

I felt like a dog on a chain that was too short and too tight, straining, straining, straining to be free. Trapped in a box. I needed to get OUT!!!

It’s not entirely reasonable. I know that. I do. But do NOT use “soon” with a child with autism, when it means something totally different to you than it does to him. It’s not reassuring. It’s frustrating. And do NOT give a to do list to someone who relies on them to function, only to add things to the list at the last moment after having dealt with an hour and a half of false “soons.”

It’s badness. That’s all I can say.

Luckily, the nurse picked up on the fact that this whole pharmacist thing wasn’t going over well, so once the pharmacist actually arrived she began the discharge stuff, so when the pharmacist left she was walking towards me with the discharge papers the very moment I stuck my head out of the room. Freedom at last!

We arrived home 23 hours after we’d left. And my day had just begun, because my brother had arrived the night before and the time I would get to spend with him before he headed to his new New York graduate school was short and precious and worth every little bit of exhaustion I would experience over the next week.

Video EEG: An Experience—Part 2

  • Posted on August 17, 2012 at 8:00 AM

So, the ghost haunting my child has a name: Epilepsy.

Is that inflammatory language? Perhaps, but I don’t care. At least, not right now.

I don’t mean to offend the many people who live with epilepsy. To them: You are not less of a person because of epilepsy. I know that. I respect that. I respect my child, too.

But the fact is that these seizures have haunted my son for months. He’s afraid of them. He’s afraid of what he does when they happen. He’s afraid of not being able to make them stop. They strike without warning, without a known trigger, and they haunt him with exhaustion and unease throughout the time when he’s not having them.

So, there. If it offends, I’m sorry, but that’s how we’re experiencing this thing called epilepsy, and, unlike autism, I’m not willing to let it run its course while offering support and opportunities for development. It’s just not the same thing.

Now, as I was saying, the ghost haunting my child has a name: Epilepsy.

This is good. As anyone with more than a passing familiarity with the fantasy genre should know, naming things gives you power over them. It brings to mind A Wizard of Earthsea by Ursula K. Le Guin. The story starts with a young boy named Ged who is destined to be the greatest sorcerer in all Earthsea, but he makes a mistake. I don’t remember the details—it’s been a long time since I read the series—but somehow Ged releases an evil upon the world, and he can’t stop it because he doesn’t know its name. He hunts it and chases it, all in an effort to learn its name and to stop the evil from wreaking havoc on the world.

Sure, it’s a fantasy story and may seem to have little to do with the real world. But, think about it. It’s true. Naming thing gives you power over them. It’s not really magical power, like in the story, but it’s the next best thing: Knowledge. Knowledge is its own kind of magic. With knowledge, comes power. Perhaps the power to heal. Perhaps the power to understand. Perhaps the power to cope. But it’s power nonetheless.

After that first in-hospital seizure, we had the power of a name. Later, when we came home, we brought that power with us and were able to tap into some pretty impressive resources. But, in the hospital, it was the power of the name—and with the naming came a course of action.

Luckily, Willy slept after his seizure. I talked with the doctor: Willy would start medication to help with the seizures that very night. An MRI would be ordered, because the doctor (the head doctor) saw the seizure in action through the EEG and saw that the seizure started in one location within the brain and then spread throughout Willy’s brain. He wanted an MRI to look closely at that part of the brain to see if he could find a cause. He also ordered blood work to be done, and then we’d come back to learn more about the results. We had a step-by-step plan of action, finally, with the power of a name.

When Willy was awake, he was weepy and whiny. He wanted to go home, because his house was the best place for him to be and he really needed to get back there. I’d hoped the one seizure would be enough, but it wasn’t. They kept us over night.

He had a seizure around 11pm, after I’d fallen asleep. He tore off his turban of gauze and ripped all the glued-on electrodes from off of his head, and made it out into the hall before anyone could stop him. I didn’t even wake up until they were bringing him back into the room. They got him back in bed and I helped soothe him while they glued all the electrodes back onto his head and wrapped the gauze turban around and around, looping it under his chin this time. Before they left, they turned on the bed alarm, which would sound if he got out of bed again.

Around 2am the alarm went off, and it woke me up. Willy was quicker than I was, tearing off the turban and electrodes before I could reach him, but I was able to keep him in the room. Again, they glued the electrodes on and wrapped up his head. Three layers of glue, now.

After that, I had trouble getting back to sleep, though Willy fell asleep right away. I tossed and turned as much as I could on the overly firm, narrow bed. After an hour, I fell asleep, to wake two hours later and start a long, full day.