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The Mystery of the Undisclosed Diagnosis

  • Posted on November 12, 2014 at 10:00 AM

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

Culture and Consciousness

  • Posted on November 10, 2014 at 11:21 AM

Clearly, it’s taking me longer to recover than one might think. I’m feeling much better than I have been, but if you could hear my voice you’d know first thing that I am still sick. I am still congested and still coughing quite a lot, though no longer so much and so deeply that my sides ache. What’s more obvious than that is that my voice is still recovering from a bout with laryngitis. Still, I have been “off” too long and I’m doing my best to get back to being productive. As I am starting to get back to work, I wanted to take a moment to share some of the thoughts that have been with me these past several weeks.

I’ve wanted to read James Charlton’s “Nothing About Us Without Us” for a while now, and I finally got my own copy. Currently, I’m reading five books at a time—each book covering a different subject. (This count does not include textbooks.) Don’t be too impressed, because I’m reading them all very slowly, because I’m not just reading them, I’m also reflecting upon their contents and studying them as deeply as I can. I like the eclectic nature of it, even if it means my progress is slower than it might otherwise be, because I come away with a much deeper understanding than a cursory reading would provide. Besides, sometimes the things I read from these different books click together in unexpected ways.

I hope you read my confession, because this is directly related to that post. Something that Charlton wrote on page 27 helped trigger the realization I describe in that post:

“Most people with disabilities actually come to believe that they are less normal, less capable than others. Self-pity, self-hate, shame, and other manifestations of this process are devastating for they prevent people with disabilities from knowing their real selves, their real needs, and their real capabilities and from recognizing the options they in fact have. False consciousness and alienation also obscure the source of their oppression.”

Charlton goes on to explore the meaning of consciousness, culminating (on page 29) in this:

“The point is that consciousness cannot be separated from the real world, from politics and culture. There is an important relationship between being and consciousness. Social being informs consciousness and consciousness informs being. There is mutual interplay. Consciousness is not a container that ideas and experiences are poured into. Consciousness is a process of awareness that is influenced by social conditions, chance, and innate cognition.”

I live in a culture that systemically devalues people with disabilities. I live in a caretaker culture, in which our government is expected to take care of people with a variety of disadvantages in a variety of ways that further reinforces the notion that they cannot take care of themselves. This culture is being reinforced through my “human resource management” studies, which consistently uses ablist language and caretaker ideas while purporting to support diversity.

It’s left me feeling like I’m getting it from all sides. On the one hand, I firmly believe that the “safety net” the U.S. and other “developed” nations provide is necessary and beneficial to society. Furthermore, I believe the “safety net” should be stronger than it is in the U.S. Simply put, some people fall through no (or little) fault of their own and these people “deserve” to be caught in the net. Other people fall due to their own failings and vices and, though they seem less “deserving,” it is still in the best interests of our society that these people are caught in the net. Finally, there are people who are “pushed” by our society, who have few natural chances to succeed, and need to be caught be the net. Unfortunately, the fact is that this “safety net” we’ve created often fails to catch people. But the true social crime is that we have inadequate means of helping people out of the net and back up into “regular” society.

On the other hand, I reject the paternalistic, caretaker attitude out society projects towards people who get caught by the net. (Note that these condescending attitudes are even stronger to those we’ve failed to catch in the net.) The underlying prejudice is that the people who provide the net are “better than” those who get caught in the net. Many of the existing mechanisms that are put into place to help people out of the net (or to make sure they don’t have to rely on the net at all) are just as paternalistic and condescending as the net itself, including affirmative action and the many other mechanisms that “promote diversity.” The idea here is that these people shouldn’t be treated differently; to ensure that they aren’t treated differently (because we know that they really are treated differently) we help them out of the net using “progressive” initiatives (because we know that they cannot succeed on their own). The whole system is a subtle, but powerful reinforcement of the underlying belief that the people our society casts off really are “less than” those that society embraces.

This is one of the reasons why I just can’t support Democrats. The language they use and the policies they so often create are just so patronizing that their underlying belief in inequality seems blatant to me and it’s offensive. But it’s also one of the reasons why I just can’t support Republicans, either. They’re less patronizing, but they’re also less apt to care enough to create the policies and programs that can actually help people. It’s frustrating, because neither the “safety net” nor the “hands up” need be patronizing or paternalistic. That attitude is not necessary, but it is beneficial if you’re more interested in maintaining a voter base than you are in actually helping people. The more people who are dependent on Democrats’ initiatives for basic survival the more people are likely to vote for them. And our bureaucracy often expresses both the political interests and the patronizing attitudes inherent in the system, when they’re not reinforcing them outright.

So, I’ve been struggling with my own limitations for over a month now. Not only have I been stressed beyond what I can bear, not only have I made myself quite literally ill (thrice over now), but I’ve also been imbibing this ablist garbage, while also reading two books (Charlton’s and a book about revising government) that help me to better envision how things could be. I’ve come away from this mess—rather I’m trying to climb out of this mess—feeling very weak indeed. Physically, I am weakened. More than that, I’m demoralized, because I’ve learned that I am not immune to this culture that I live in. I internalize it. When I’m strong enough, I reject it. Mentally, I reject it outright. But emotionally, when my filters and defenses are shredded, I internalize it and it sticks with me. I spew it back out in the form of self-talk that makes it harder to stand back up and get back to work. Then, I have to go back and clean the garbage out of my system by analyzing it, weighing its merits, and then discarding it once I realize (again) that it really doesn’t have any. Before all of this, I was arrogant enough to think I was immune to this garbage, because I was conscious of it. I know it is garbage, so why would I be susceptible to it! But it doesn’t work that way. Intellectually, perhaps I am immune, but how I feel is something entirely different. Sadly, I hear it, I feel it, and it hurts. When it gets its slimy tentacles tangled up inside me, it hurts more than I can bear.

My Confession: I Have a Disability

  • Posted on October 29, 2014 at 9:56 AM

If you haven’t guessed by my blatant lack of posting, I’ve been having a hard time of it lately. I’ve been feeling like Job; except, I have conscience enough to feel guilty for feeling like Job, because I know Job had it way worse than I have got it. After all, Job’s miseries started with the loss of all of his children in a “freak” accident. Thankfully, all my children are alive and well.

It all started with a good thing. I decided to try Chantix to help me quit smoking once and for all. It worked for my uncle. It was working for my mom. I was ready to bite the proverbial bullet and have a go. I was warned that it might make me “a little more tired” and that it may cause some “vivid dreams.” These warnings did not prepare me for what was to come.

While on Chantix, I slept 18 to 20 hours a day. The worst part, though, was that I wasn’t even aware of how much I was sleeping because I had very vivid dreams that I was living my life, including turning in the assignments I’d promised to my clients.

This went on for two weeks before I accidentally missed a dose and I started to realize that things weren’t making much sense. I became suspicious—paranoid, really—and I decided to intentionally miss a dose. I was sick with headaches, nausea, and a pervasive dullness that made me want to crawl right back into bed, but I was also aware, with a growing sense of dread, that there was a distortion in my sense of reality.

So, right before my mom’s hip replacement surgery, I stopped taking Chantix altogether. I spent the day at the hospital, which is its own kind of misery. We had a bit of a scare (regarding the delay in my mom’s “recovery” period). Yet, I was able to stay awake and alert and conscious of my surrounding throughout the day. I committed myself to ‘ssessing out what’s what.

The next day, Tuesday, went by pretty quickly, as I needed to be there for both my mother and my children. But that evening I hunkered down to try to figure out what had really happened and what hadn’t. I had over 800 e-mail messages in my in-box. That freaked me out. I shut down my e-mail and went to my assignment folders. I couldn’t find any of the work that I remembered doing. I went back to my e-mail, sent off a frantic message to my co-author, and called it a night. Honestly, I just wasn’t up to facing the dreadful truth. I was hoping to wake up to discover that this was just a nightmare and everything was really just fine and dandy.

Wednesday morning my co-author and I had a Skype meeting and he gave me the nitty gritty from his end of things. I’d been gone for two weeks. He couldn’t get in touch with me via any of my known methods of contact. He’d honestly feared that I, and possibly my entire family, had died.

By then my e-mail in-box had over 900 messages (mostly spam). I tried to sort out the spam from the legitimate messages, got through about 400 messages (just sorting them), and sent off heartfelt, honest apologies to my clients. I then went upstairs, told my husband how thoroughly I’d messed up, and cried on his shoulder for a good 15 minutes before I was ready to face the music. I went back downstairs and started reading the messages I’d missed.

Despite the mess my business was in, life went on around me and there were many needs I had to meet. My mom was in the hospital until Friday; then, she was moved into a nursing home. The boys needed me, my mom needed me, and my clients were all very understanding. I struggled to get everything back under control, but my confidence was shattered. I’d messed up so thoroughly and, even though it wasn’t exactly my fault, it was definitely my failure. I felt it keenly.

Day after day I tried to manage everything I needed to do and everything I hadn’t done—and I failed. Day after day, I tried and I failed. Again. Again. Again. Again.

The stress exploded exponentially and I succumbed to a fibromyalgia flare up that floored me completely. Before the Chantix I’d gotten my daily, regular pain down to a 3 out of 10 (10 being bad). Now, I was at a 7 out of 10. (For context, my broken wrist, delivering my children, and my bouts with my gall bladder usually rang in at around an 8 out of 10.) My ability to concentrate was at a 2 out of 10 (10 being good). I just could not do my work. At all. I could barely meet the needs of my children and my mother. I could barely function. I felt even more like a failure.

Last Wednesday was my day. I woke up, got the boys off to school, and decided I could afford to take a nap. I overslept. Scrambled to get ready. Arrived late for the IEP I was going to duck out of early. Contributed nothing and left anyway. I scrambled to finish getting ready at my mom’s, but we just got later and later. We were supposed to leave by 2:30 PM. It was well after 3 PM when we actually left. I tried to make up the time as best as I could, because we were driving down to Chicago. This was going to be my night. This would turn everything around.

I was doing fairly well—just a bit late—when we ran into a major slowdown that suddenly became a parking lot. We waited for over a half an hour before things got moving and by then I was definitely late for my night. It was pass time for things to start when we got off the interstate, but I was determined to make an appearance anyway. This was my night!

I was going to my alma mater, except I drove right passed it because the building had been completely refaced and was now unrecognizable. I backtracked. My mom decided we could park; I didn’t need to take the extra time to try to drop her off in front of a building we couldn’t find. So, we parked in the underground parking area, right near an elevator which would take us up to the street. I unloaded her walker and we were off, albeit slowly.

I managed to find my school, about a block and half away, and we made it into the building and to the room where the event was taking place—just as people were leaving. I wormed my way forward to present myself to my former advisor. She got out the mic and got people’s attention. She introduced the award that was being given and then she introduced me, the recipient. I read an excerpt from the piece that had won me an award for overcoming adversity. I was able to read it without any anxiety, because, honestly, how much worse could it get? I watched the audience respond to my piece with gratification. Then, when I was done, the audience applauded. This was my moment. This was the moment when everything would magically turn around for me.

Except it didn’t. It started with the walk back to the car. We walked back much more slowly, for my mom’s sake. And it was during that long, slow, excruciating walk that I realized that the cramps I’d gotten from the long drive would not be worked out of my legs before I had to get back into the car and do it all over again. Once we were back on the interstate, we still had to swerve through endless miles of non-existent road construction, where miles and miles of the road were “under construction,” but there were only two areas (with many miles between them) where workers were actually working. As bad as that was, the worst was yet to come.

The “highlight” of the evening was our stop at the Road Ranger. Mom didn’t like to pay at the pump, so we went in to pre-pay. My legs were still cramped and my mom still had her walker, so the walk to the store was slow going. Mom pre-paid for the pump. We went to the rest room. We got some drinks and hot dogs. Then, we made the slow, painful way back to the pump. But the pump wouldn’t work. I walked back to the store and the clerk explained that our transaction had been canceled, because we took too long. I walked back and my mom elected to use her credit card to pay at the pump instead, because I really, really didn’t have to walk back to the store. So, I swiped the card through, made the appropriate selections, and set up the pump. The gas didn’t come. I waited and waited, but the gas didn’t come. So, I let go of the handle, turned back to the pump, and tried to see what was wrong now. Then, the gas started to flow and it started with so much force that the pump popped out of the gas tank. I turned just in time to be sprayed from head to toe with gasoline—mostly in my face and all over my skirt.

I stomped back to the store and reported the incident to the clerk. She just blinked at me. I stomped into the rest room, cleaned myself up as best I could, but I still reeked of gasoline. I stomped back to the car and did the only I could. I popped the trunk, threw my coat and my skirt into the trunk, slammed it shut, and put on the trench coat I’d lent to my mom. The shirt I was wearing was a tunic, long enough that some people—but definitely not me!—might wear it as a dress, so this wasn’t quite as “revealing” as it might sound.

Finally, I got into the car and was prepared to drive away and never, ever come to a Road Ranger again. But my mom said she wanted her receipt. So, I drove her up to the store and got out her walker and let her go in by herself. She came out a little while later, saying that not only did the clerk say that I must have “done it wrong,” as if I hadn’t been pumping gas without incident since I was fifteen, but also claiming that she’d already given me the receipt. My mom told me to come in with her so she could get her receipt.

“Mom, I’m not wearing any pants!”

And that was that. We drove away. When I’d finally gotten us into my mom’s garage it hurt to get out of the car, because my sweaty skin had stuck like glue to my mom’s leather seat. I limped to the other side, helped my mom get out and up into her house. Then, I changed back into the clothes I’d worn for the IEP and I went home.

The days that followed didn’t get better, because the sinus infection I had had become full-blown bronchitis, and got progressively worse. My productivity went from being negligible to be nothing at all. And I was angry. I was angrier than I had been in a long time. As a person of faith, I’d been praying this whole time for some help—divine intervention. The Bible tells us that God answers such prayers. My prayers were being answered with silence and I was angry. I’d had enough. I couldn’t take it anymore and I couldn’t do it anymore and I was done. I was DONE. I QUIT. And if God wanted to change that He’d have to do something big.

But we develop routines for a reason—at least, the ones we develop on purpose—so, the next morning I did my prayer journaling, grudgingly, then I did my independent studies. And, while my anger and resentment didn’t evaporate, I realized something. There was that nagging voice saying, “Of course you couldn’t take it, of course you couldn’t do it, of course you should quit...” And I finally stopped long enough to examine why.

I am a person with a disability. And as long as I’ve lived I’ve heard that people with disabilities can’t… It doesn’t matter what it is, there’s always somebody saying that a person with a disability can’t do it, or can’t do it well, or can’t do it enough, and shouldn’t try to do it at all. And for as long as I’ve been aware of the disability rights movement I’ve been fighting this kind of stereotyping. I’ve been fighting the oppression that says that a disability—any kind of disability—dictates what we can and cannot do. Each of us has things that we can do, things that we can’t do, and things that we cannot do very well but might enjoy doing anyway. Disability doesn’t change that. I know this. I believe this! I fight for the world to see this!

But it doesn’t save me from that subtle and not-so-subtle voice I’ve heard all my life.

So, here is my confession: I am a person with a disability and I gave up—just for a day—for no better reason than that I believed that, because I am a person with a disability, I couldn’t do it. But I won’t live my life like that—that’s really something I just can’t do.

Allegiant: A Critique

  • Posted on September 19, 2014 at 10:00 AM

Veronica Roth wrote Divergent, Insurgent, and Allegiant. I watched the movie and then got the books and I blew through the first two, becoming far more immersed in the stories than I should have been considering that I had a business to run and course work to do, not to mention a family to nurture.

Then, very early in Allegiant, what I read felt like a punch in the gut. If you want to read the book and haven’t yet and don’t want any spoilers, then stop reading; if, however, you also have adverse reactions to “triggers,” then you might want to consider reading anyway. I promise I won’t give away the ending.

There comes a point when the main characters learn what “this” has all been about:

A few centuries ago, the government of this country became interested in enforcing certain desirable behaviors in its citizens. There had been studies that indicated that violent tendencies could be partially traced to a person’s genes—a gene called “the murder gene” was the first of these, but there were quite a few more, genetic predispositions toward cowardice, dishonesty, low intelligence—all the qualities, in other words, that ultimately contribute to a broken society.

…despite the peace and prosperity that had reigned in this country for nearly a century, it seemed advantageous to our ancestors to reduce the risk of these undesirable qualities showing up in our population by correcting them. In other words, by editing humanity.

Allegiant by Veronica Roth, pg. 121- 122, emphasis added

I literally became sick to my stomach when I read that. The feeling persisted until the end of the book. And I was disappointed, because nobody in the book realized that the problems they were facing were an inevitable product of the original decision to mess around with humanity’s genes.

See, my problem with all of this, with the whole big mess, is that NONE of the characters react to what has been done in a way that it deserves. They react to what these scientists are doing in their own present in a variety of ways, which I sympathize with because these behaviors also deserve a strong reaction. The story’s present is the primary concern, after all. I understand all that and think Roth does a fairly good job presenting the variety of reactions.

But at no point does anyone even stop to wonder if they had the right to do what they did or whether the proposed goal is worthy or good or justified. We’re talking about eugenics! And, despite the disastrous consequences, nobody steps up to say, “You know, maybe you shouldn’t have been messing with humanity’s genetics in the first place and should stop messing with them now for that reason, if for no other.”

I have to wonder if it occurred to Roth. Did she realize that she was writing about eugenics, the same pseudo-science that the Nazis used to “excuse” the Holocaust? Did she realize that there would be a revolt before the country engaged in any mass eugenics project? Did she know what she was talking about at all?

Is It Just Me?

  • Posted on September 15, 2014 at 8:56 PM

eBooks are the way of the present and will, I’m told, become more prevalent in the future. There are a lot of reasons why authors are particularly eager for the acceptance of the ebook. It allows them to reach out directly to their readers. As a writer, I share their enthusiasm—until I have to read one.

A friend of mine wrote a novel and published it as an ebook. I bought the ebook and began to read it, got frustrated, and then distracted. There was nothing wrong with the story. For as long as I could forget the screen, I could get into the story. Then it would be time to “turn” the page. It made it all-too-easy to put it down.

That was before my diagnosis of fibromyalgia, which means it was before I started to have to really think about what encourages my own productivity. Recently, I had two ebooks I was supposed to read for my course work. I tried and failed. I literally could not get past the first page.

One of the reasons for my failure is that the system wasn’t user friendly. The publisher who made the book available as an ebook clearly cared more about protecting copyright than they did about the readability of their ebooks. For example, I couldn’t access the ebook via my Kindle. I had to zoom in to see an eighth of the page at a time to read the thin, gray text. Every time I tried to scroll to a different part of the page, it reset me to the top of the page. It was a “horrid unpleasant” experience.

Another reason for my failure was that, inconvenience aside, I couldn’t concentrate on the text in this format. This is kind of peculiar, because I read text online all the time. I realized, however, that my brain has different modes for reading different things. The mode for reading novels is different than the mode for reading text books. The mode for reading online is different from either of them.

As I considered this issue in more depth, I realized that there are lots of things I have avoided reading online. If I get a short PDF, I will waste the paper and print it out. If, however, it is a lengthy blog post I’m fine reading, then it’s fine for me to read it online. I can read online news article just fine, but I can’t get in the right reading mode to really enjoy an online short story. This has been true for a long time and it’s become more pronounced since the onset of my fibromyalgia.

I broke down and bought the text books, because I realized that was the only way I was going to get through this class. I’ve realized that the mode I get into when reading course materials and fiction, while different, both involves being unaware of my surroundings and becoming immersed in the material. This is not possible when I’m online, accessing the material via my computer. I assumed my discomfort would change with increased exposure, particularly on the Kindle, but I’m beginning to wonder if this is just one of the quirks of being me.

I can’t help but wonder: Is it just me?

A Request: Limits, Challenges, and Opportunities

  • Posted on August 20, 2014 at 10:00 AM

I’m currently working on a set of introductory guides that I would like to make available sometime in the relatively near future. These guides are intended to be less overwhelming and less prescriptive than most of the books I’ve encountered, as well as being decidedly shorter. At the same time, they’re intended to be more thorough and more comprehensive than many of the booklets and pamphlets I’ve encountered. I’m trying to produce a happy medium.

Each of these guides will introduce a form of disability (starting with those that I’m most familiar with and maybe staying within only those) to a generalized audience. On the one hand, I want it to be useful should a new parent or newly diagnosed individual pick one up. On the other hand, I want it to be something that can be handed out to co-workers and service providers as well. I want these guidelines to explain what a specific label—autism, for example—is and what it means for the people involved.

To this end, I would like to humbly request those of you who would be willing to do so to please share the limits, challenges, and opportunities that you have experienced as people with disabilities or have observed the people with disabilities in your lives experience.

If you’re willing to share, please leave a comment on this blog and I will contact you or you can contact me.

Thank you!

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.

A Look Forward

  • Posted on July 18, 2014 at 10:00 AM

As the boys grow older, there are some things that are hard to ignore. Their bodies are maturing and we need to help them understand that. They’re heading for major life transitions and we need to develop a plan for what their lives will look like after school. There are choices to make, services to acquire, and things to set in motion.

These things are difficult in the sense that they consume time and energy. They need to be planned and those plans need to be led, not by Mark or me, but by our children who will be living those plans—for better or worse. These things are easy in the sense that there are choices, paths, and opportunities. We can do something about these things.

Sometimes thoughts sneak up on me that I did not expect. Earlier this week, as I was talking with our friend about her young children, it occurred to me that we might someday have a similar discussion about our children’s children. If scientists are to be believed, the human race—like every other species on earth—has a natural impetus to reproduce. The mating process encourages survival of the fittest. If all that is true, then there seems to be a lot of unanswered questions, like how “fitness” is decided and why social structures perpetuate qualities that do not seem to be in the best interest of the species.

Personally, I believe man-made science seeks to explain what God already understands, because God created a system that truly works. I know, despite our best efforts, we’ll never completely understand how the universe works, because we have finite minds and a system like the universe works on levels far beyond what we can grasp. As an example, what are the full implications of light that can act as both a particle and a wave? Why must light be both a particle and a wave to serve its purpose?

Whether or not my children have children of their own isn’t going to be determined by science or who is fittest, but by the choices they make and what God wills for them. That’s what I believe. Yet I think there’s something to that natural impetus. I’m too young for grandchildren, but that doesn’t mean that I don’t want my children to be able to have children of their own. I think that should be between them and whoever they might conceive the child with. It’s not up to me, nor should it be. It’s not up to the government, nor should it be. It’s not up to society or any self-entitled group or person.

Unfortunately, human society has produced numerous people and groups that believe they should have the power to make those kinds of decisions. This results in dramatic, world-changing affairs like the Holocaust and the other genocides that have been committed in the name of various forms of purity—as if any kind of purity could be acquired by drenching the earth in human blood. This also results in less dramatic, but equally evil affairs like forced sterilization and denial of reproductive rights.

I can influence many things about my children’s future. I can fight with every ounce of my being that eugenics does not prevail. Yet I know that this silent, hidden enemy is alive and well and plays a very current, if less dramatic role, in contemporary society. I don’t want to look into the future and see this possibility, but denial doesn’t mean it isn’t there.

Back in Time

  • Posted on July 17, 2014 at 10:00 AM

A friend came to visit while I was sick. I tried to stay away, but she poo-pooed that idea. I met her twins—a boy and a girl—for the first time (at least it was the first time I could remember). They’re fifteen months old and their adventures made it perfectly clear that our house was no longer baby-proof.

Over ten years ago, I went on a journey of discovery. I found Birth to Three, I found a doctor to diagnose first one son, then another. I navigated IFSPs and IEPs. I wrangled with diagnoses, labels, and services. And now I see this friend beginning a similar journey.

She knows she’s “different” and she has received diagnoses of disabilities for herself. Now, she’s seeing herself repeated in her daughter and she’s seeing other traits that are duplicated but different in her son. They both have developmental delays, though they started services early enough that they’re “almost caught up.” They both have sensory issues and may or may not have autism, Asperger’s, and/or epilepsy. (I didn’t see any pronounced signs of any of these diagnoses.)

This woman’s situation is complicated by the lack of a spouse, an antagonistic “support system,” and the involvement of social services. As a person with disabilities, she was vulnerable to the maneuverings of people who wanted CPS to remove her children from her home. Now, she’s taking the hard road back to regaining custody.

Hers is a different journey than mine in many ways. There are things Mark and I have no experience in. There are other things that we do know more about than she does. We can share the wisdom of our experiences. We can empathize with her frustrations and her struggles. We can remind her that, above else, her first job is to acknowledge that her children are different, that it’s okay that they’re different, and that focusing on what is and isn’t normal is not the best way to serve her children.

We can be for her the friend we didn’t have when our children were that little. It seems small, but it’s something that means a lot, at least to us.

Sleeping Through the Night

  • Posted on June 20, 2014 at 10:00 AM

I have this goal that somehow, someday I will be able to go to bed at night, sleep through the night, and stay awake through the day. In other words, I want a normal sleep experience. I want to have this normal sleep experience consistently. This may or may not involve an occasional nap, but that’s okay.

This is a dream that seems far from my reality. My sleep schedule is no longer a schedule. I can get four hours of sleep at a time, sometimes up to six, but that can happen at any time. I can force myself to be awake at a certain time, but the effect is only temporary. My sleep schedule rotates from being awake during the night to being awake during the day, with about two complete shifts per week. I rotate from a 18 hour day to a 36 hour day (in contrast to a 24 hour day), but those are just rough estimates. The point is that my sleep “schedule” is definitely not healthy.

So, I had a sleep study to start the healing process. That happened Tuesday night. I arrived around 9 pm. I was brought into a room that resembled a hotel room, complete with a bed, two night stands, a bathroom, and a television. I watched a video that explained the sleep study process and what they might discover about my sleep. After that was done, I got into my jammies.

Then, the technician wired me. It was similar to the boys’ EEGs, but different, too. The technician told me that most sleep technicians were actually EEG technicians. There were wires for my head, my face, and my legs. There were straps with wires across my chest and my abdomen. These wires were tucked in a “ponytail” and clipped to one of my straps. While they were uncomfortable, they felt psychologically restraining.

The sleep technician went off to her other patient and I filled out the paper work I was supposed to have completed before I arrived, as well as the few forms that I got from the technician. I finished shortly before the technician returned to plug me in so I could go to bed. I was definitely drowsy. A few more wires were added, including a bandage-like one for my finger, which would measure my blood oxygen levels.

It was all pretty painless. Then, I went to bed on the adjustable bed. I made it a soft (but not too soft) number 50. The pillows were thinner than I usually prefer. The technician became a disembodied voice over a speaker. She ran me through a few maneuvers – breathing, wiggling one leg, then the other, looking (with just my eyes) up, down, and to each side. Then, I was allowed to roll onto my side, using one of the pillows to help support my upper leg, and go to sleep. Sometime during the night, the disembodied voice told me to sleep on my back, so I did. Then, I fell asleep again and had a weird dream about being strapped and wired with a disembodied voice giving me commands. It wasn’t frightening, but it was a sci-fi version of the real experience I was having and it was a bit disturbing.

I woke up around 4 am and had to go to the bathroom. It’s a good thing it wasn’t urgent, because she had to come in and unplug me before I could go, which was different from our EEG experience. I told her that I wouldn’t be able to sleep again, which is usually true. She needed me to lie down for another hour, even if I didn’t sleep. So, I did, though I didn’t want to. I was restless and awake and annoyed for some time, and then I heard the disembodied voice telling me it was time to wake up. Somewhere in between those two events I fell asleep, though it didn’t feel like I had. It seemed like I was conscious of the time between, but maybe I wasn’t. I wondered what level of sleep I’d reached in the duration, but I didn’t ask. She unplugged me, unwired me, asked me a few questions, gave me a few instructions, and I got dressed.

I slept through the night and I felt better rested than I usually do. I wasn’t as sore as I usually am in the morning, but I don’t know if it was because I didn’t toss and turn as much (because I was conscious of being wired, even in my dreams) or if it was because I’d made the bed much softer than my own. I was able to drive to the convenience store and then to Dunkin’ Donuts and then home without a problem, even though I hadn’t had my morning medicine. I took that when I got home and tried to get back into my routines. It was difficult, because everything was different. It was disorienting. But I’d slept. Hopefully it provided the doctor with the information he needs to help do it more often. We’ll see.