Caregivers Who Don’t Care

by Lillian Csernica on June 29, 2013

I’m seeing a really alarming trend in the news lately.  There are more and more reports of teacher and aides abusing special needs children.   The very people we’re supposed to trust with the safety, care, and education of our learning disabled, medically fragile, and behaviorally challenged children are bullying them and physically abusing them.  This has raised awareness to the point where parents are calling for surveillance equipment in the classrooms to make sure more special needs students don’t suffer at the hands of people despicable enough to abuse their powers of authority.

My younger son John is autistic and has in-home aides who help him after school.  Such aides come to us from the care agency which is contracted with the state agency who pays for this service.  I’m here to tell you that some of the people sent to us by this agency shouldn’t be put in charge of blowing their own noses, much less taking care of a special needs child.  One particular aide John had was a sneaky wretch.  She was all smiles and shipshape manner in front of me, but I found out from one of the other mothers at the park where John played that this aide grabbed his arm and shook him, or she’d drag him around by the arm, and this was before John did anything that might merit strong action.

The day I fired this woman, she stood there in my living room ranting for ten minutes about how the situation was all my fault.  Not until I told her I was about to call the police would she shut up and get out.  I informed all of the mandated reporters I knew about this aide and made it clear to the agency how she had abused my son.

Caveat emptor, my fellow special needs parents.  Just because the state and county agencies say they’ll provide a one to one aide either in school, at home, or both, don’t take whoever they provide at face value.  You would not believe some of the horror stories I’ve heard from other parents about the kinds of people who go into home care, both as nurses and as aides.  Regarding aides, it’s often more or less unskilled labor provided by somebody old enough to make sure the child stays out of trouble and can call 911 if a medical crisis occurs.   That’s not good enough!

Many parents don’t know the right questions to ask, especially when they’re still coping with the shock that follows realizing their child may have special needs.  Many parents aren’t familiar with all of their rights in regard to what they can ask for, and how they can go about making sure the school district provides it.  When Michael reached an age where he could enter the school system, I really wish I’d had somebody there to tell me all the details and guide me through the decisions I had to make.  With these concerns in mind, I’d like to offer this list of helpful and informative links:

Coping with Learning Disabilities

The Assertive Patient

The rights Special Needs Parents have under the IDEA

Expected Standards for a Professional Health Care Worker

The qualifications Care Agencies require from potential in-home workers

As parents, we are the primary caregivers.  We must speak for those who cannot speak for themselves.  We must defend those who cannot defend themselves.

Related articles

• FIVE Core and Essential Qualities a Caregiver Must Have (carewithcarecanada.wordpress.com)
• Caregiving Stress Busters (baptisthealthforyou.com)

A Writer’s Dilemma

by Lillian Csernica on June 26, 2013

Tonight I’m pondering opportunities and trying to see my way clear to the best combination of factors.  There’s an anthology with a submission deadline of June 30.  I have a story already in inventory that fits the theme.  The story needs to be one thousand words longer, and it needs to be stronger in terms of the horror content.  I think the story has some good selling points.  And yet, I’m torn between several considerations.  It’s hard to buckle down and write when I’ve got all these thoughts churning in my mind:

Do I add the thousand words, or do I keep it short?

Do I make it more to the gore-laden end of horror, or do I keep it in the dark fantasy spectrum?

Do I write in the first person to increase the immediacy of the action, or do I go with third person limited, which most editors seem to prefer?

Do I go ahead and submit to this market because this particular story suits the theme, even knowing the money and exposure will be relatively limited?

Do I build the story into something longer and better and take a shot at a higher-paying, more prestigious market?

How do I decide what my artistic priorities are?

How do I decide what my business/career priorities are?

How do I weigh them both against each other and come up with one prioritized list?  Can that be done?

At what point do I decide I’ve done right by the story, by my career, and by myself?

Time is money.  If I alter this story too drastically, I might cripple it for a wider range of markets.  Yes, I can keep a draft of the unchanged story on file and go back to that.  I’ve already done so.  Still, when do you take the leap of faith and blow up a story, reshaping it into something you hadn’t considered earlier, just on the chance that you might make the sale?  When do you step back and say, no, I’m going to let this one pass.  I’m saving this story for something/somewhere else.

I’d love to hear from you!  Let me know what you think.

What To Do When You Hit A Plot Snag

by Lillian Csernica on June 24, 2013

There you are, sailing along, achieving your process or productivity goals, when suddenly you crash into that iceberg of despair, the Plot Snag.

You’ve written yourself out on a limb.  You don’t know what to do next, who does it, why he or she does it, and where to go from there.

You’ve painted yourself into a corner.  Simple logic plus the conditions you’ve set up in your story dictate a few limited possibilities, none of which will take you to the ending you want to create.

You’ve discovered a logic flaw that will require considerable rewriting to repair.

Somebody in your critique group points out that your Crucial Gizmo a) can’t exist in the world of your story due to lack of materials and/or technology, or b) wasn’t invented until fifty years or more after the period of your story.

Your main character is making decisions and acting on them in a way that might advance your plot, but does not ring true in terms of characterization.  If an author has to treat characters like puppets just to push the story along, there’s something wrong with the story.

Let’s not even talk about that dreaded sin, Author Intrusion.  The writer who thinks that’s any solution to a plot problem needs to sit down with the works of the Masters and abandon all such shabby tricks.

So what do you do?  Read back through the story and find the point where the plot started going in the wrong direction.  It might have been a line of dialogue.  The main character mulls over some new information and makes a decision that takes him or her to a place that not only doesn’t advance your plot, it tangles up the story.  Maybe there’s something wrong with a particular character’s motivation, and that causes complications that interfere with the desired course of the story.  Once you’ve identified that point of divergence, then you can start steering the story back on course.  Don’t think you have to throw out everything after that point of divergence.  Some of what you’ve written might still be useful.

I mentioned the works of the Masters.  Let me offer some comfort and inspiration from these fine authors:

Stephen King, On Writing:  “There is no Idea Dump, no Story Central, no Island of the Buried Bestsellers; good story ideas seem to come quite literally from nowhere, sailing at you right out of the empty sky: two previously unrelated ideas come together and make something new under the sun. Your job isn’t to find these ideas but to recognize them when they show up.”

James M. Frey, the How to Write A Damn Good Novel series: “You can kill the spell of identification just as easily as you can create it—if you lose the readers’ sympathy for the character.  You can lose reader sympathy by having your character commit acts of cruelty to another character with whom the readers identify more strongly or for whom they have strong sympathy. You can lose reader sympathy by having the character make dumb choices—acting at less than maximum capacity. The idiot in the horror story who responds to creepy noises by going into the attic armed only with a candle is an example. You can lose reader sympathy when a character seems too ordinary, is stereotyped, or doesn’t struggle hard enough. The reader wants to cheer a fighter, not witness a milquetoast wallowing in, say, self-pity.”

Nancy Kress, Beginnings, Middles, and Ends:  • The shape of an effective scene is this: First, it orients us in time and place (How much time has passed since the last scene? Are we in the kitchen or outside on the patio? What does it look like?) The scene introduces a question we want answered (What will the heroine decide to do now? How does this new piece of information change things?) Finally, it finishes on some sort of slightly rising note: another question or a heightened emotion or a new complication or a change of situation—something to keep us reading into the next scene.  (This quote comes from Nancy Kress on How To Get Out of the Slush Pile)

Jack Bickham, Scene and Structure  “Writers write.  Everyone else makes excuses.”

Lawrence Block, Telling Lies for Fun and Profit:  “One thing that helps is to give myself permission to write badly.  I tell myself that I’m going to do my five or ten pages no matter what, and that I can always tear them up the following morning if I want.  I’ll have lost nothing–writing and tearing up five pages would leave me no further behind than if I took the day off.”

The Plot Snag is just a speed bump on the road to completing your story.  It can be annoying and inconvenient, but it can also be avoided by planning ahead.  That can mean a full scene by scene outline, or it can mean a few notes jotted at the end of one work session to keep the next session on track.  Remember, rewriting is your friend!

Friday Reads: Productivity for Writers

The key phrase I found here is “attention management.” I already do some of the practices suggested here, and my productivity does improve.

Full Hands Means a Full Heart

by Lillian Csernica on June 21, 2013

 

John’s being John again today.  Uppity, stubborn, argumentative, all those lovely traits the educational system sums up under the term “noncompliant.”  It’s very tiring to remember all the tactics I have to use so I don’t fuel his conflict spiral or mirror his behavior.

I just happened across the graphic above.  I see a lot of pro-autism signs and memes and whatnot, but this one really spells it out.

See, June is a very hard month for me.  June 15th is the anniversary of the day I lost my first baby.  It’s one of those days where I either keep myself really busy and try not to think about it (aside from a time of private remembrance), or I go hole up somewhere so I don’t have to deal with people who know what day it isand come looking for me to make sure I’m “okay.”  Hell no I’m not OK.  Does one ever stop mourning the loss of a child, especially a baby?  Until I lost James, I’d never seen a baby-sized coffin.  That right there made it all so real I just could not continue with the funeral home process for a good several minutes.  The first time I ever got to refer to myself officially as “mother” was when I signed the papers for James’ funeral arrangements.

So I know about empty hands.  That’s why I look at this graphic about autism and I remember how much I love John, how glad I am that he’s my son, and how even though he can be a pain sometimes, I’ll take that pain and a thousand more like it for the sake of my boy.  The same goes for Michael with all of his needs and medical conditions.

Yes, each of my sons is a handful.  A handful of treasure, of love and joy and funny moments and the wonders of watching them grow into the men they will become.

Keeping Our Spirits Up

by Lillian Csernica on June 19, 2013

So here I sit at my keyboard, contemplating today’s Writing To Do List:

 1) Write Nightmare #10 reviews for Tangent Online.

2) Get my flash fiction ready for the Big Event this Saturday.

3) Push on with the edit of the Japanese historical novel.

 4) Socialize media-wise for the day.

Michael’s seizure threshold is down, so he’s having multiple small seizures.  John’s fixation with Aladdin‘s genie lamp is in full swing again, meaning the latest one arrived in today’s mail and he’s already talking about the next one he wants to buy.  The new nurse starts on Saturday.  First I had no ride to the appointment I have tomorrow morning, then I had two due to communications unknown to me by members of my family, and now I’m down to one once I got that straightened out.

Being a responsible adult is such a pain in the butt.  I have at last reached the stage where I know it does in fact beat the alternative.  Someone I know once made a comment about “teenagers with gray hair and wrinkles.”  I know a few of those, and I know I don’t want to be one.  I’m all for enjoying one’s second childhood, but I’m not that fond of people who refuse to grow up.  The Peter Pan Syndrome is not as charming as some people like to think, especially when the attendant irresponsibility makes life harder for the rest of us.  I’ve been a caregiver since I was eight years old, thanks to being an Adult Child of an Alcoholic.  These days I have to keep an eye on my mother for signs of anything that could mean serious trouble.  She can still take care of herself, it’s just that some of the parts are beginning to wear out.

It’s hard to step out of our own individual little worlds and take responsibility for what happens in our part of the larger world.  It’s hard to do the work before we play.  It’s hard to watch other people who have lives that are so much easier than our own.  Some days it just sucks to be us.  And that’s just how life is.

Allow me to share with you the secret of staying sane amid the pressures of a normally hectic life, to say nothing of the life lived by those of us in the special needs community:

Always have something to look forward to doing.  Large or small, give yourself something that keeps you looking ahead in happy anticipation.

Maybe it’s that novel you’ve been dying to get your hands on.  Maybe it’s that nap you’ve been promising yourself.  Maybe it’s getting somebody to take care of the kids for the weekend while you run off to lock yourself into a hotel room somewhere and write like a maniac, eat whatever you want, then watch bad TV.  (OK, so that’s my personal fantasy.  Sounds good, though, doesn’t it?)  Figure out what floats your boat, what lifts your spirits, and keep that list somewhere handy.  Build one of those items into your day, your week, your month, whatever you can manage and, more importantly, on a basis regular enough to do you the good you need.

Tonight it’s Wednesday.  John just came in to remind me it’s Family Night.  He baked chocolate chip cookies, and now he’s waiting for me to come watch TV with him.  Gotta go!

Lessons From a Life on the Spectrum | Child Mind Institute

Lessons From a Life on the Spectrum | Child Mind Institute.

Interview with author Lynne Soraya.  This book looks to be well worth reading.

Baring My Soul

by Lillian Csernica on June 17, 2013

ONE CONFESSION:

Here it is, the grand finale.  I’ve been mulling over this post. contemplating some serious topics.  You know what?  I’d rather have some fun.

Taken in its milder sense, a confession is the admission of having done something you’ve kept quiet about because you’re too embarrassed to admit you’ve done it.  Here, then, are a few of the skeletons in my closet who wear Hawaiian shirts.

When I’m at home I’m generally dressed in my bathrobe because A) I’m lazy, b)it saves on laundry, and c) there’s considerable precedent for the bathrobe being the uniform of the working writer.

I spend more time sleeping on the living room couch than in my bed because I stay up too late, the cats drape themselves all over me, and before I know it my insomnia meds have kicked in.

If something happens that sets me off, either depression or grief or total knickknack-smashing frustration, my husband will put me in the car, take me out, and find some place where he can buy me a rock.  Seriously.  That’s how I got the labradorite heart that I treasure.  It probably has something to do with me being a Capricorn.

I sleep with a stuffed toy cat.  (Or I would, if I could find the box we packed it in when we moved.)

I once went sneaking out with my male BFF in high school on my first experience of toilet-papering a house.  The next day at school we found out that in the dark we’d gotten turned around and missed our target house completely.  I still wonder what came of that night.  Who lived there?  Who were their suspects?

And now, here it is, the Big One:  I’ve written fan fiction.  I won’t tell you my pen name, but I might be willing to tell you which fandom(s), and who I ship(ped).

Five Gifts My Father Gave Me

by Lillian Csernica on June 16, 2013

As you know, I’ve written about my father in a previous post.  My father wasn’t all that comfortable with expressing emotions.  He tended to let money do the talking.  That meant I got a lot of presents.  Was I spoiled?  Probably.  My brother and sister would say so, but they might be biased.  I’m the only child of my mother’s second marriage, which makes me my father’s only child.  That was no easy honor, especially when I think everybody (including me) would have been happier if I’d been born male.

My father taught me the importance of taking pride in your work.  When I was in elementary school, I could say with pride that my Daddy could fix anything.  He’d been an aeronautical engineer in the Navy.  If it was a mechanical problem, be it a toaster or a lawn mower or the engine in a car, he could fix it.  He was patient, he was thorough, and he brought a lot of experience to the task.  Now that’s what I call a role model.

My father had a bad temper.  I’m not exactly a mellow person myself.  I learned to use anger as my first line of defense as well as a fallback position.  This is not healthy.  Daddy was living proof of that.  I think the stress his temper put on his heart and lungs contributed to the breakdown of his health.  Now that I am old enough to understand that anger is a choice, I have learned to make other choices, healthier choices that do not damage my relationships with the people around me.  This understanding is a gift from my father because it was through observing the damage his anger did to him that I made the important realization about choice.

My father loved me.  He taught me to fish and shoot pool and play poker.  We went horseback riding.  He taught me to go bowling so well that I was allowed to join his team in the company league.  Daddy bought me my own custom-fitted bowling ball and had a shirt made for me with my name embroidered on it.  My father was proud of me, all the trophies I won on the Speech and Debate Team and the few As I got on math tests and the goofy prizes I won in costume contests and pumpkin-carving contests and other kid stuff.  Daddy had his problems, and I wasn’t exactly a joy as a teenager, but the one thing we were both sure of was that he loved me.

My father showed me that people can change.  He was an alcoholic who remained sober for nineteen years before he died.  In the world of recovery, that’s a staggering achievement.  My father acted as a sponsor for other people who wanted to make the hard journey to sobriety.  Daddy even became a volunteer literacy tutor.  This angry man who was absent for so much of my early childhood because he was out drinking his paycheck got ahold of himself and did all the hard work it took to become a different person.  Again, this is what I call a role model.

My father has given me, through the wonders of genetics, my son John who looks just like him.  John loves to go bowling, he likes to shoot pool, he has a good time playing pinball.  I’m sure if I ever took him fishing he’d probably have a good time doing that.  He’s not that fond of card games, so I don’t know if poker will ever be an option.  Maybe I can get him to play Spider Solitaire on the laptop.  My father’s mother, brother, and sisters have seen John, and they know that the best of Daddy lives on inside him.

Happy Father’s Day, Daddy.  I love you, and I always will.

Smiley Hieroglyphics

by Lillian Csernica on June 15, 2013

TWO SMILEYS THAT DESCRIBE YOUR LIFE RIGHT NOW:

Pffffft.  They haven’t invented the smiley that can sum up an average day at our house.  The shark, maybe, or the crazy face.  Otherwise too much gets left out.

😀   I am happy that the school year went so well and ended on a high note.  I am happy that I have a new laptop and found my novel file intact after the transfer.  I am happy that the weather has been reasonably mild so far, keeping me from feeling like my brain is boiling inside my skull.  I have waist-length hair and I can’t wear it up because it gives me a headache.  Try wearing a fur coat all summer long.  Makes me feel deep sympathy for my cats.

😛   There’s all the usual stuff to be anxious about, along with a few new items that are just so wonderful I don’t even want to talk about them.  Anxiety management is an important life skill.  They really ought to teach it in high school.  Now that would be something valuable to carry with us, especially when facing the rigors of trying to get into a good university.

So much for this, the penultimate item of the 10 Day Challenge.  The grand finale will feature “:-( One Confession.”  Stay tuned!

 

 

 

This is my first name in hieroglyphics, courtesy of Hieroglyphic Print Machine version 2