Category Archives: Epilepsy

Showering in the Dark

I remember the first time it happened. I had lived in my new apartment for a couple of weeks and went in to take a shower at the end of a typical busy day. I like to shower in the evenings; I can take my time, and it affords me the mental and physical luxury of washing off the day. I got in, wet my hair, and began lathering shampoo, feeling myself winding down, thinking about the evening ahead. I would do some yoga, check my email, and then watch a movie with Nigel. Suddenly, without flickering, the bathroom light went out. It was completely dark in the windowless room. I panicked, thought of both Psycho and Silence of the Lambs, and gathered my courage to step out and turn on the heat lamp that I had not yet used but figured would be bright enough for me to finish showering with. Naked, dripping everywhere, I fumbled my way around the still-new bathroom, found the switch for the heat lamp, turned it on, and got back in the shower to rinse my hair.

Later, I would discover that the bulb in the regular light had not burned out. I had decided to change it the next day, and that night while reading in bed, it suddenly illuminated the bathroom of its own volition. Glad that I didn’t have to change the bulb, I chalked it up to faulty wiring (since, upon inspection, I could jiggle the wall switch to turn it back on) and went about my life with a temperamental bathroom light.

No activity was exempt from its sudden desire to go out. I would discover this while sitting on the toilet and find myself yet again in total darkness, having to get up and hobble over to turn on the heat lamp. I would be washing my face, with soap in my eyes and water running down my arms. Shaving my legs. Dying my hair. It got to the point where if I were going to be doing something that made it difficult to stop and turn the light back on, I would just turn the heat lamp on at the beginning instead of the regular bathroom light.

This worked fine until summer. I absolutely could not take a shower with the heat lamp on. So of course as soon as I lathered up my hair, the light went out. I stood there in the dark, water pelting me, shampoo beginning to drip down my forehead. I stood there and thought maybe this is what it’s like taking a shower when you’re blind. I have no idea; I certainly don’t want to be ignorant in conjecturing about something I have no experience with.  But I wanted to try it. So I finished lathering and rinsing my hair in total darkness. I applied what seemed to be an appropriate amount of conditioner. And as I stood there, feeling my temporary deprivation of sight, feeling the water spray my body, listening to the sound of it, smelling it, trying to get in touch with my other senses, I realized something.

It was not profound. But for some reason I had not thought of it before, and I think that relaxing and learning what there was to learn from that experience is what caused me to try reaching my arm out of the shower to turn the light back on. Instead of panicking and leaping out of the shower to turn on the heat lamp, I enjoyed being in the dark for a minute, reached my arm out to the side of the shower curtain and around the wall. And I easily reached the light switch for the regular bathroom light. I turned it back on and started shaving (wasn’t brave enough to do that “blind”).

Of course, as I am wont to do, I tried to apply this experience to life metaphorically. I guess it’s just a reminder not to panic when something unexpected happens. Don’t freak out when you don’t know what to do. Relax, and clarity will come to you. I learned this with Nigel’s seizures. After he’d been having them a while, I realized that I needed to force myself to remain calm. I somehow thought that it wasn’t doing him any good if I freaked out, that he was picking up on my energy. And when I kept calm, I became clear. I wondered if I talked soothingly to him if that would help him. I told him, as he violently convulsed, that I was there with him, that he was okay. Even though he was not conscious, I gently told him to relax, relax. And immediately he began unclenching his feet and his hands, even as he still convulsed. Then his convulsions subsided, much sooner than usual. To my knowledge, it was his shortest and least violent seizure ever. And his recovery time was 10-15 minutes, instead of the hour or two that it used to be.

A year and a half later, my bathroom light still goes out on a regular basis. I’m still spending time every week in complete darkness. But also in total clarity.

image courtesy of Wikipedia

At the Threshold

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

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There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four.  And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong.  I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.   

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I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.

image courtesy of http://www1.cgmh.org.tw

When It’s Not Okay

I call my son’s name about five times to try to get his attention. He is clambering on top of a 5,900-foot high volcanic plug in southern Oregon called Pilot Rock. Everyone in our group has reached the summit and is walking around on the larger, more easily accessible area, but Nigel has opted to climb over to the more difficult portion, separated from everyone else, and has happily been there for quite some time. I continue to try to get his attention to let him know we are ready to start our descent, but he does not respond, even though I know he is well within hearing range. He is in his own world, verbally stimming. He is 18 now, and autism is alive and well.

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I haven’t posted for a while, and there are several reasons for that. I could delineate each of them, but there’s one that stands out.  It’s huge and it’s overwhelming. And it’s not talked about enough in the autism community.  It’s usually hidden, brushed under the rug, and denied, when really it’s the bear in the room no one wants to poke. Some of us with older children – young adults, even – are reluctant to talk about it outside of our immediate families because we don’t want it to affect our children’s (possibly soon) future plans and dreams (yes, I’m referring to myself). But maybe that’s part of the denial. If I don’t talk about it, maybe it will go away.

In the past year my sweet, gentle son has become aggressive. And I will not go into detail except to say that it has sadly gotten to the point where I have had to look at supported living options for him, in the event that he can no longer live with me. I hate writing this. But I feel that I must because I know there are other parents experiencing this, not knowing what to do. Feeling blindsided. Feeling alone. Asking why me?

The first thing to do, if you have not done so already, is to contact your local Developmental Disability services office. This is usually handled by the county, but it may be different in other areas. There may be an evaluation process to determine eligibility, so get started as soon as possible. Once your child is found eligible, you will be assigned a case manager who will work with you to discuss housing options and tell you what services are available, including a behavioral consultation that may help determine the underlying causes of the aggression and what to do in the short term to manage it. I also contacted our local police department to tell them about my son and to determine ahead of time what the procedure would be if he were having an aggressive episode and I needed to call 911.

The second, and equally important, thing is to try to figure out what might be causing the aggression. In Nigel’s case, it started about a year ago when we increased his anticonvulsant medication (because he was still having seizures). Each time we needed to increase the dose, he had an aggressive episode, and they continued to get worse. I didn’t make the connection at first, but after six months, I finally did. I did some online research – not just chat boards (although those were very helpful) – but also medical trial reports and studies. It appears that my theory was correct. However, I noticed that he had a couple of aggressive episodes not during a dosage increase, and I also noticed several other symptoms that I recognized as indicative of bipolar (since I have it). So I finally got his neurologist to start him on a new anticonvulsant, but it’s not yet at a therapeutic level for us to decrease the “bad” one. And I finally got Nigel in to see the county’s adolescent psychiatrist just last week. She said that autism and bipolar are often comorbid disorders. And after a thorough evaluation, he received a diagnosis of bipolar and was prescribed a mood stabilizer. Bipolar is often treated with anticonvulsants, but the doctor felt that Nigel’s case is severe enough to warrant additional medication. Furthermore, due to some anxiety and OCD symptoms, Nigel had previously been prescribed an antidepressant, which was no doubt causing manic episodes and aggression.

At the time of this writing, we are still very much in med-change mode, and we have not yet been able to decrease the first anticonvulsant, so there’s no change to report. But I do have one positive note to end on – that we obtained this additional diagnosis while he is still with me, so that I can get him the medication he needs, and above all, that he can feel better. Because to say that he has not been himself is a huge understatement. I know how awful bipolar has been for me, and the thought that his is worse than mine pains me greatly.

I realize that I may be criticized for writing this post, for exposing my son’s problem behavior. But I did not write this post for attention or sympathy, I wrote it for the same reason that I started writing and blogging about autism five years ago: to connect with other parents and help those in the same boat. Our children’s aggression is scary, bewildering, and very hard to talk about. But it’s often part of what we face as parents of children with autism, and we have to talk about it. We owe it to ourselves, and we owe it to our children.

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Eventually, Nigel noticed that I was summoning him, and he got down off the rock. But all the way back down the mountain and to the car, he strode on ahead of the group at least a tenth of a mile. He was argumentative in the car. And that night he had one of his worst aggressive episodes ever. I may never fully determine what causes his aggression; most likely there are multiple causes (sounds familiar, I know). But I will do everything in my power to figure it out and help my son. Autism has been our bedmate for quite some time. It’s still alive and well – but, with a few adjustments along the way, so are we.

The Few. The Proud. The Ineligible.

Dear US Marine Corps Recruiter,

First off, I wanted to express how much my family and I support and appreciate those who put themselves in harm’s way and sacrifice time with their families while serving in the military. We have a special Veteran’s Day tradition that Nigel started years ago, and we always remember that Memorial Day is not National BBQ Day. My great-grandfather served in World War I and my grandfather was a US Marine who served in World War II, of which I am especially proud. My father served in the military and so did my sons’ father. But Nigel, my older son, cannot.

When you called last night as we were finishing up dinner, I was slightly amused by how you said, “May I speak with Nigel, please?” For one thing, it’s very rare for him to receive phone calls outside of immediate family. Nigel has autism, and while I know that that alone does not make him ineligible for the military (I did my research), he’s been in special education since the age of three and has a documented six-year emotional delay. I completely realize that you didn’t know any of that, and that you would have had no way of knowing that. I wanted to see what would happen if I put him on with you.

And he did great, didn’t he? You guys talked for about five minutes! He very clearly stated that his after-high-school plans were to move to Los Angeles, go to film school, and work for Disney. And you didn’t miss a beat in telling him that he could film documentaries for the Marines! I gotta hand it to you, you’re good. Nigel, who loves military history, was pretty excited about that prospect, mostly because he thought that he could go straight out of high school to be a filmmaker for the Marines. That’s the way he thinks, and if you don’t tell him differently, how would he know? And he also didn’t know that having epilepsy makes him ineligible for being in the military. So that’s why he didn’t mention it when he was talking to you, and why, as he told me afterward, he was looking forward to talking with you again (since you told him you would call again).

Mr. Recruiter, if the school district allows the US Marine Corps to obtain a list of private citizens’ phone numbers so you can call them during the dinner hour, would they not also allow you to ask for a list of any students who have a Seizure Protocol on file? It certainly would have saved a lot of disappointment on my son’s part. He can’t drive, can’t take baths, has to limit screen time (which, as an aspiring filmmaker, is incredibly disappointing), and now he finds out he can’t be in the military. I know, he needed to find out anyway. I just wish he hadn’t gotten excited about it beforehand. So I told him last night, and he said that he wanted to tell you himself the next time you call. Because he still has his pride, even if he can’t be a Marine.

Thank you.

Nigel’s Mom

The Aura

I was going to write a hopeful post, an “it-will-be-okay” post, about how even though Nigel had a seizure last week, and I discovered him postictal, face down in a huge pile of Lego, bleeding from several cuts on his forehead, nose, and neck, he told me the next day that he thought he understood what is meant by having an aura, the feelings or sensations one experiences immediately prior to having a seizure, that he was starting to recognize his, that it’s a “woozy” feeling. I was going to write a post that at least there was that, that maybe he could learn to use his aura, as some with epilepsy do, to circumvent the seizures, not just because they are scary to witness and he gets cuts on his face, but because, according to research, the more seizures the body has, the more the body gets used to having them, but also because they can be fatal, and that terrifies me.  I was going to write that post and then just a few days later he had another seizure, a massive one I witnessed from the beginning, and as it was ending he stopped breathing a few times, and I should have called 911 but I felt paralyzed, focused on willing my son to breathe, telling him to, in his unconscious, agonized state, and he did and I collapsed in relief, shaking, shaking, too shell shocked to cry, not daring to wonder what if.

The next day I asked him if he had experienced the “woozy” aura and not surprisingly he said no. I know it takes a long time and lots of practice to develop it, but the fact is I don’t think he would have had a chance with a seizure like that, which is how all of his are. Big. Bad. And although I often try to be Zen-like about the seizures I find that I undeniably have PTSD and my heart involuntarily starts racing with terror every time his eyes roll or his hands stiffen or he makes an unintelligible vocalization and of course whenever I’m out of the room and I hear a thud or a series of thumps, and I curse the seizures, hate them hate them hate them, even though I’m all too familiar with the New Age tenet What you resist you draw to you, but how could I not resist them? How?

Things That Go Thud in the Night

 

They happen at night.

Sometimes it’s a resounding thud, the unmistakable sound of a body hitting the floor. Other times, a series of repetitive thumps, as rigid limbs strike the wall or pieces of furniture. My blood runs cold. I never understood that figure of speech before, but now I do. And my heart beats wildly out of control as I run down the hallway to help my son.

Because I know, before I even get to him, that he is having a seizure. Of course, I didn’t know the first time. But from that day forward, a sort of PTSD kicked in, and now, whenever I hear thuds or thumps in my house at night, my body reacts. I leap out of bed, even out of a sound sleep (although since my boys were born, I’ve rarely slept soundly), or I bolt upright if I’m sitting at my desk or on the couch. I’m on high alert as the end of the day creeps near.

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It’s been a year now since Nigel’s first seizure. He went for six months without having another one, and then for the past six months he’s had several. They have all been very similar – classic tonic-clonic (grand mal) with loss of consciousness, eyes rolling back in the head, labored breathing, frothing at the mouth, rigidity and convulsing of limbs, lasting approximately two minutes. Two minutes is a long time to be watching your child’s body betray itself, to be praying it will stop soon, to be wild with fear, wondering if you should run and get the emergency medication which must be administered rectally for seizures that last five minutes. Nigel’s most recent seizure lasted an agonizing four minutes.

And all of them were triggered by screen time – either watching movies or working on his computer. So now, we’ve had to adhere to a new house rule – no screen time after 9:00PM. And for a sixteen-year-old who has loved watching movies all his life, that’s really hard. With all the difficulties he deals with throughout his day, he always had his evenings to relax and do his favorite thing. Now that has come to an end. He can still watch movies, of course, but he has to schedule them so they end by that time. The time when his brain starts misfiring and he is more susceptible to the trigger of images on a screen.

I tell myself that at least there are the two constants of the trigger and the time of day. I tell myself that chances are good he won’t have a seizure while he’s riding his bike to school or taking a shower. I tell myself these things, but the 24-hour EEG he had recently tells us differently. The results indicate “frequent, random” spiking, and his neurologist warns that he could have a seizure at any time of day, in any activity. Nigel started taking an anticonvulsant medication recently, and I’m hoping that as the dosage gradually increases, he won’t experience any of the negative side effects associated with it (among them, dizziness and double vision – not good for those who ride bikes and take showers). Per his doctor, Nigel can never take a bath again, something he had always enjoyed.

The diagnosis of epilepsy, which affects 25% of people with autism, has been a difficult blow for us. As with his autism diagnosis nearly fourteen years ago, our lives are forever changed. I find myself, as I did so long ago, diving into books and searching websites (at least there are those this time around!) and contacting my wonderful blogosphere friends who have lived with their children’s epilepsy for many years. They have been such a comfort to me as I navigate this new territory in special needs parenting.

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A few nights ago, I awoke to the familiar, unwelcome sound of thumping against Nigel’s bedroom wall. I bolted out of bed, somehow had the presence of mind to glance at the clock (3:15AM), and ran out into the hallway.  It’s a horrible way to wake up – shaking, adrenaline pumping, heart pounding, leaping out of bed. But worse was the realization that he was seizing in his sleep, which had not happened before. I opened his bedroom door and turned on his light. His body had stopped convulsing, which was good (this one lasted less than a minute), but he was on the edge of his bed with his arm hanging down to the floor. His breathing was heavy, but regular. I waited to make sure he was fine, and then, not sure what else to do, I dragged my still-shaking self back to bed. I tossed and turned, unable to sleep the rest of the night. I debated if I should tell Nigel and ultimately realized that I should. For one thing, I consider myself very blessed that I can tell him, that at his age and level of development, he can comprehend what I say. And I want him to know as much as he can about his seizure disorder and how it affects him.

In the morning I go to his room and sit on the edge of his bed after he’s woken up. Gently I say, “Nigel, you had a seizure last night in your sleep.” Immediately he says, “No, I didn’t.” I tell him that I heard thumping against the wall last night and came in and found him on the edge of his bed with his arm hanging over the side and his eyes moving under the lids. “No, I was just having trouble sleeping and was rolling around in bed. I remember when you came in and turned on the light, and I was just trying to keep my eyes shut so you wouldn’t know I was awake.”

Relief washed over me. Thank God! He didn’t have a seizure in his sleep. And thank God I decided to talk to him about it, and he could tell me, or I wouldn’t have known, and the worry would have plagued me. Oh, the worry will still plague me for many reasons, of that I am sure. No doubt we will face plenty more hurdles as we continue our journey with autism and epilepsy. But at least for now, sleep is still sacred, and seizure-free. I am hoping it will always be so.

(image courtesy of Wikipedia)