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Of the World

  • Posted on March 5, 2014 at 10:00 AM

When I took on this whole parenting thing, I didn’t want or expect children with autism. I knew very little about autism, disabilities, or my own neurological differences. I wasn’t an advocate. I didn’t even know that parents needed advocacy skills.

That being said, I didn’t want or expect “normal” children either. Both my husband and I are different from the norm. Part of that difference—part of what we’ve come to understand about ourselves through our efforts to raise our children—is that we’re neurologically divergent. Mostly, though, we’re just weird. And we actually like it that way!

“In the world, but not of the world” is a common Christian phrase used to describe the relationship Christians are expected to seek with their surroundings. The general idea is that Christians are called to live in and act upon the world—love your neighbor, do good unto them that hate you, etc.—but are not supposed to be of the world—seduced into worldly beliefs, worshipping idols, etc. It’s a delicate balance between maintaining our beliefs and acting on them.

When I think of “normal,” I think of people who are “of the world.” I think of how “business ethics” is accepted as an oxymoron. I think of how bullies are accepted in schools as part of the way things are and always will be. I think of how people think it’s unrealistic to expect us to end things like rape, molestation, and domestic abuse. I think of how it’s “normal” to cheat on your taxes or steal from your employers. It’s “normal” to use or manipulate others. These behaviors are perfectly normal, even expected, and yet there’s nothing admirable or praiseworthy about them. They are “of the world.”

Now, I’m not saying everyone who is consistent with the neurological or physical human norm do these things, nor am I claiming that people who are not consistent with the neurological or physical human norm don’t do these things. I’m just saying that when I hear “normal,” I think of the many unethical and irresponsible “normal” behaviors that permeate my society and the world.

I never wanted my kids to be normal!

I suppose that made it easier to accept my children as they are for who they are. Then again, I accept my step-son, who is neurologically normal, as he is for who is. I try to teach all of my children how to live good, responsible, ethical lives. I don’t want any of them to settle for being “of the world.” I don’t want any of my children to be normal.

Worth

  • Posted on November 22, 2013 at 10:00 AM

What do you do to reinforce the worth of a child in a world that’s better at tearing people down than building them up? The schools have their own strategies, though those seem to be better at making people feel good than enabling abilities. What do you, as a parent, do to build up your child’s worth?

Do you tell them you’re proud of them? Do you tell them why? Do you encourage them in their interests? Do you continue to support them when their interests change? Do you recognize both the good and the bad, and encourage them to be all of who they are? Do you tell them you love them? Do you show them you love them unconditionally?

Worth is something that must be instilled. A lot of people erode others’ worth for their own sense of self importance. You need to instill more than others erode. It’s just part of a parent’s job.

Discovering Fibromyalgia

  • Posted on November 28, 2012 at 9:00 AM

As part of my new-found determination to engage in self-care, I thought a good first step was to take a closer look at some of the health concerns I was experiencing and to take corrective action. I would take the time to take my own health seriously.

It started with researching the symptoms that I believed were associated with my history of gallstones, to see if there were better ways to avoid, alleviate, or eliminate the time-consuming, energy-draining pain and discomfort. I was surprised and a bit taken aback when my searches consistently led, not to gallstones, but treatments for irritable bowel syndrome (IBS) or inflammatory bowel disease (IBD). In comparing symptoms, the IBS seemed more consistent with my experiences.

Then, I discovered that IBS is strongly correlated with fibromyalgia. I remembered learning, during my early research into autism, that children with autism were strongly correlated with mothers with fibromyalgia. So, I clicked on the link to fibromyalgia to see what the symptoms were.

I was amazed to find, between the list of symptoms for IBS and the list for fibromyalgia, all but one of my health “complaints.” (The suspected diagnosis was a bit of a surprise for a lot of people, because I’d been trying not to complain.) I already knew the cause of the other one and had already started addressing that problem.

I admit to spending a rather lengthy night trying to talk myself out of these discoveries. Fibromyalgia and IBS are both among a set of disorders that are only recently acknowledged by health professionals and are also among those where there’s no real “fix” for the problems. And one of the problems is chronic fatigue.

I was prepared to discover that I was “stuck” with chronic pain; I was not prepared to discover that I was equally stuck with chronic fatigue.

I have four children, three with diagnoses of autism, two (soon to be three) teenagers, and a husband with chronic depression. Add to that my high motivation, my business, my classes, and my desire to expand my writing projects. The math clearly states that I cannot afford chronic fatigue.

The whole point of all this research, after all, was to increase my productivity, which has been in a downward spiral, tanking after the latest discovery of epilepsy. I had absolutely no interest in coming to terms with my limitations. Nope. Not gonna happen. I was resolute.

That lasted until a family member who is also a medical service provider, who happens to have some expertise in fibromyalgia, came over the next evening. I discussed my suspicions with her. She touched me in two places and I didn’t provide a fibromyalgia-type reaction. For a moment I thought I was in the clear. But I kept talking and she decided to test the other trigger points.

I’d felt the pressure she exerted against the first two points. It was a poke. When she “poked” my shoulders, my back, my hips, and my chest it felt like she was jabbing me instead. The pain was sharp, intense. It faded slowly—far more slowly than I would have expected. She tested me around 7 PM. I was still awake with a dull, aching pain in each of those areas until 2 AM. A piping hot bath helped a little, but the pain lingered in a dull, lazy sort of fashion until well into the next day.

Slowly, with a sinking feeling in my stomach, this new reality set in. My first response was to talk to my husband about the tests, because he’s the most likely (aside from me) to be impacted. Then, I shared the probable prognosis with my co-author, who is another person who is likely to see a considerable impact. Next, came my mother, but only because she was sleeping and prefers to talk; so, I had to wait until the next day; whereas, I communicate with my co-author mostly (but not exclusively) through e-mails, so I could blast our suspicions off for him to read at his convenience with the specification that this convenience be after his vacation had concluded.

Then, as the pain continued into the wee hours and I still couldn’t sleep, I thought back. The first time I could remember Alex “jabbing” me with his finger in a tender spot was two years ago. That’s also around the time the “gallstones” got less occasional and the associated discomfort stopped responding to the sarsaparilla. That’s also around the time I started feeling “old,” meaning that I would wake up stiff and sore, requiring longer and longer periods of time in the morning, creeping from fifteen minutes to two hours, to work out the “kinks.”

After finally getting some much needed sleep, I took a good, close look at those symptoms again. Damn. Damn. Triple damn. I’d already given up the denial, but now I was convinced. That doesn’t mean I have to like it.

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.

Check Out My Revamp

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

I have finished the overhaul of my website, Stephanie Allen Crist!  Yay me!

Please take a moment to check it out.  Pay special attention to some new pages:

And introducing…

Of course, if you’re an editor looking for a new writer, feel free to contact me.

Quick Breaths

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

I’ve been taking something of a break during this gap between courses.  It’s not that I’ve stopped.  I rarely stop.  If I stop, it’s because I’ve crashed.  But I’m going more slowly, pushing myself less hard.  I’ve noticed, though, that I still hear a lot of people telling me to take it easy.  (What, this isn’t easy?)

It can be a challenge, keeping up.  I don’t mind it, really, except for the paper work, the documentation.  If I could avoid that, I would, so I procrastinate until it’s so urgent it must be done.  Other than that, I like to stay busy.  I like the sense of accomplishment, especially when I know there’s so much more to accomplish.

But when I do slow down, when I remember to breathe, to relax, to enjoy.  I like that, too.  It just doesn’t last and I’m not ready to make that leap that will make it last.  There’s too much to do.

I’ll take this quick breaths, then I’ll plunge back into the fray of too much work and too little play.  What else can I do?

Reliving the Moments

  • Posted on March 12, 2012 at 8:00 AM

I love being a writer.  I’m glad being a writer gives me the means to share my stories and to advocate for my children.  But, honestly, sometimes it sucks, because impacting the lives of others requires sharing my own, especially the painful moments.

I’m working on a book that I describe as a “persuasive memoir.”  It’s more than a typical memoir, but it relies on sharing my experiences to show how I got to where I am.  I’m also collaborating on a book about special education, and this first one that we’re working on focuses on what parents need to know when they’re just getting started.  It seemed, from the conversation I was having with my collaborator, that he thought I sort of knew what I was doing when I first entered the world of special education.  But I didn’t.  So, I had to put into context for him what my entry into special education was really like.  And then, he wanted me to write up that story for the book.

It hurts.  Even though I’ve moved on from these moments, even though I understand the importance of sharing them, it hurts to write them down.  Part of my process in writing is to immerse myself in the moment again, to capture how it felt and what was going through my head.  I’ve come a long way since these moments, but going back to them still hurts.  Perhaps it always will.

But this is what I do.  It’s what I need to do.  By sharing my experiences, I help those who are living them now to know they are not alone in those experiences, and that there is a time after those experiences when things do get better.  It’s about humanity and hope; it’s also about helping others to get the information and wisdom that I lacked, that I wished I’d had, without having to come the long way around to discover it.

And sharing my experiences with a professional of the caliber of my collaborator also benefits me.  I’m still learning.  The curve is steep, and I’m still climbing.  Every new bit of information, every trick, every technique helps me to serve my own children better.  Sharing that with others helps them to serve their kids better.  And, in the end, the world will be a slightly better place for the work I’m doing.

That’s worth doing.  But that only makes the pain worthwhile, not less.

A De-Stressing Surprise

  • Posted on September 3, 2011 at 9:51 PM

So, while I was taking a short break from blogging in order to make more time to help my boys transition back to school I was also researching an article idea I had about stress and parenting children with special needs. I wanted to provide my potential readers with a greater understanding of what stress is and how to cope with in relation to the challenges of special needs parenting. As a reasonably well-educated and well-adjusted mother of three children with autism, I thought I could write from a position of authority on this topic.

I wasn’t wrong, but I wasn’t right either.

You see, for some silly reason I thought I had a pretty good handle on my stress. Maybe, relative to some, I do. But, as I started researching the signs of excessive stress (or, to be particular, excessive unmanaged stress), I realized that I wasn’t managing my own stress as we as I should.

The following list describes some symptoms of unmanaged stress and my reactions. You might want to check your own reactions, because the consequences of unmanaged stress are bad for your health (not to mention your ability to parent your children effectively).

Symptoms (my responses):

  • Memory difficulties. (Um, what was the question again? Um, yes, I got that.)
  • Difficulty concentrating. (While I’m sure my children being out of school—and the subsequent increase in volume—is part of it, concentration has been an issue.)
  • Poor judgment. (Not so much…unless I’m judging that poorly.)
  • Seeing only the negative. (Not only the negative.)
  • Anxious or racing thoughts. (Um, yeah, but that’s kind of normal for me.)
  • Constant worrying. (Again, normal—for me.)
  • Aches and pains. (Not really.)
  • Nausea, dizziness. (Thank goodness, no.)
  • Chest pain, rapid heartbeat. (Definitely not that.)
  • Frequent colds. (I work in a wet basement, so I’m not sure my perpetual sinus condition counts.)
  • Moodiness. (Unfortunately, yes.)
  • Irritability or short temper. (Yeah, I got that.)
  • Agitation, inability to relax. (I’m getting better, really I am!)
  • Feeling overwhelmed. (Does it count if you are actually overwhelmed?)
  • Sense of loneliness and isolation. (Nope. The boys are way too loud and active for me to feel lonely or isolated.)
  • Depression or general unhappiness. (Yes, but I’m clinical, so that doesn’t really count.)
  • Eating more or less. (I’ve eaten today, so I’ll count that as a ‘no.’)
  • Sleeping too much or too little. (Too little time=too little sleep. Duh!)
  • Isolating yourself from others. (Did I mention I work in a wet basement?)
  • Procrastinating or neglecting responsibilities. (Um, well, yeah, there’s that…but only a little.)
  • Using alcohol, cigarettes, or drugs to relax. (I’m addicted to cigarettes, but that’s not new. Though, stress is the reason I started to smoke and the reason quitting doesn’t go well. So, that’s a ‘yes.’)
  • Nervous habits. (Yeah, again, that’s kind of normal for me.)

The symptoms of unmanaged stress correlate rather closely with the symptoms of certain anxiety-related disorders. Go figure! I have been diagnosed with both depression and OCD, so it’s hard to separate out what’s going to be normal for me and what’s actually manageable stress, but it looks like I need to work on this some more.