Category Archives: Special needs

Caring for two teenage boys, one with cerebral palsy and seizure disorder, one with low spectrum autism.

#atozblogchallenge D is for Don’t


by Lillian Csernica on April 4, 2019

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Some of the lessons I’ve learned in my writing life have been firsthand experience, and some have come from observing the disasters other people have brought upon themselves. Since seven is widely considered a lucky number, I’ve distilled these “teaching moments” down to a list of seven Don’ts:

 

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Don’t burn bridges.

I have written three different regular columns for three different magazines. More than once what I wrote became rather controversial. One of my editors decided it would be a wise move to show my column to someone in the field before the column was published. I did not know about this at the time. What I did know is the way the editor insisted I make changes to that column, all of which were later revealed as being specific points complained about by the person to whom the editor showed it. Were these valid editorial objections? No, they weren’t. They had nothing to do with The Chicago Manual of Style or proper grammar. They had everything to do with private personal agendas. That editor sold me out. Once I found out what had really gone on behind the scenes, I was quite angry. Did I call the editor out? I did not.

Notice, please, that even though this happened twenty years ago, I’m still not naming names. Why? Because in the writing field, which really is a small world, it’s not smart to burn bridges. You just never know where that editor might turn up next. Sure enough, this particular editor went on to work at a magazine that had considerable importance in my chosen profession. Burning that bridge would have had serious repercussions.

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Don’t forget to say thank you.

Nobody owes you anything. If somebody does you a favor, show appreciation in an equivalent and appropriate way. I’m always passing on market information to my fellow writers. At least two of those people made their first sales based on info I sent their way. Writers ahead of me on the career food chain have introduced me to my heroes such as Ray Bradbury and Robert Silverberg. Once a successful writer gave me a roll of gold foil Autographed Copy stickers. Years later there came a day when I met Joseph Malik, a newly published writer, in the SFWA Suite at WorldCon and made sure he had some Autographed Copy stickers for his books. What goes around, comes around. Let’s all help each other.

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Don’t waste energy on self-doubt, anger, jealousy or fear.

None of those will get you where you want to go.

I live with grief, depression, disappointment, and constant fear. I can let them suck all the strength out of me. I can point to all the reasons in my life, valid reasons, for why I don’t get more writing done. Or I can write. Make the time, make the effort, get it done.

Take those emotions and use them to power your writing. Even if all you do is spew your negative emotions into your personal journal, writing is writing. As my dear teacher Andy Couturier says, “Keep the pen moving!”

Don’t be afraid to offend people or make them angry.

When I was little, my mother taught me not to talk about politics or religion. Mom said that was the surest way to start a fight. What do I write about now? My historical novels involve a certain amount of political intrigue. My fantasy often has some kind of religious content. A while back I appeared on a lot of religion panels at conventions. I would often end up defending Christianity, which really upsets some people. Those people took a serious dislike to me because of my beliefs, and that had some career repercussions. Oh well. This is still the land of the free and the home of the brave, at least for the time being. St. John Maximovich, Archbishop of Shanghai and San Francisco, once said, “Where there is no adversity, there is no victory.”

Just write. Tell your story. You are not responsible for how people choose to react. If you let fear control your voice, you’ll never say anything dangerous or exciting. Who wants to read safe, boring, middle-of-the-road writing?

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Don’t think you’ll remember it later.

You won’t. Write it down.

Don’t stop learning.

There is so much out there to know. Learning opens doors, and not just in terms of a college degree or a certificate or a license. Like most writers, I know a little about a lot of things. More than once, when I’ve met someone new, I’ve been able to find some common ground almost immediately thanks to knowing about food or music or folk art from their part of the world. And if I know nothing? I ask questions. I listen. I get excited, because I love to learn something new. Just the other day, at the local dollar store, I heard a man speaking a language I thought I recognized. Sure enough, he told me it was Arabic. When I mentioned how beautiful the Arabic script is, the man told me something I did not know. Arabic is read right to left. See? Always learning!

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Don’t stop writing.

I lost my first baby. He’d just started kicking. I was so happy. Called my parents, called the in-laws, told them all about it. Three days later, I ruptured early and that led to a miscarriage. I stopped writing in my personal journal. There was no way I could write down what I was feeling. I could not live through it all again.

Two or three years later, something must have happened to break up the emotional log jam inside my mind. I began writing in my plain spiral notebook with my plain black ballpoint pen. Then I wrote a pirate romance novel for fun and escapism and maybe even profit. I got an agent, who sold that novel. And so Ship of Dreams came into the world.

Keep writing. Every day. Meet your time, fill your quota. It adds up, and you will become a better writer.

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Filed under #atozchallenge, Blog challenges, Conventions, Depression, Eastern Orthodox Christianity, fantasy, Fiction, frustration, historical fiction, history, Lillian Csernica, mother, parenting, publication, research, Special needs, travel, Writing

How To Deal With Peculiar People


by Lillian Csernica on March 27, 2019

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The Younger Boy (TYB) and I were out running errands the other evening and we stopped in at our favorite pizza parlor. There are six, count ’em, six big flat screen TVs. We’re regulars, so the staff lets us have a remote and watch whatever we like while we’re eating our food. Most often we watch cooking shows or paranormal investigations or whatever YA show TYB prefers at the time.

On this particular evening, I witnessed the ritualistic behavior observed by another regular patron. I’d seen this woman two, maybe three times, but I hadn’t noticed the details that would have cemented her in my memory. That was about to change.

For the sake of both anonymity and clarity, let me call this woman Barbara.

We were sitting in our favorite booth eating pizza and watching a show TYB chose. Most of the flat screens in the pizza parlor are set on sports games, so I’m in the habit of making sure the close captioned subtitles are on. That way I can keep the volume down and still know what the people onscreen are saying. This is important. Bear it in mind.

Barbara comes in, sees us sitting there, and stops dead in her tracks. She looks up at the screen we’re watching, looks back at us, then goes to the register to place her order. She keeps glancing over at us, then chooses one of those bistro tables where the chair and table legs are extra long. From the bag she’s carrying, Barbara takes out a seat cushion, plumps it, sets it on the chair, adjusts the angle, plumps it again. She moves on to the napkin dispenser and pulls out several paper napkins, unfolds them completely, then takes a long time making sure there’s a solid layer covering the tabletop.

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This particular pizza parlor is kept in a good state of tidiness. I’ve seen it messy only during the lunch hour all-you-can-eat buffet when turnover is rapid and the staff are busy making more food. The floor is always clean. If I ask, somebody comes out right away to wipe down the table where we like to sit.

Even so, Barbara takes extreme pains to prep her chair and her table.  Then she looks up at the flat screen across from her. It’s the one designated #3. TBY and I are watching #4. Barbara comes around the railing that divides the bistro tables from the booths. She ignores me completely and greets TBY by name. She’s vaguely familiar, so I figure she must be somebody we knew from the years my boys went through the local school system. TBY doesn’t recognize her, and has no interest in doing so. This makes no difference to Barbara, who begins explaining how she’s going to watch a certain show now, she really likes that show, so would that be OK with him? He gives her a polite yes. This is making him uncomfortable. Barbara goes through it again, still not making any eye contact with me.

At that point I realize what’s really going on. When I want to change the channel on #4, I ask anybody who’s sitting in that area if that’s OK with them. Most people aren’t even paying attention, but they do thank me for taking the time to check first. Barbara wasn’t trying to be polite. Barbara was telling TYB what she was going to do. There was a script running inside her head and we weren’t giving her the replies she was after. I suspect we were watching the flat screen Barbara usually watches. The disruption of her ritual might have caused her the predictable rise of anxiety in someone who has OCD or OCPD, which are two separate and distinct diagnoses. I could be wrong. This might have been nothing more than one more garden variety control freak with territorial imperative, which is a lot more common than clinical OCD or OCPD.

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Barbara had crossed the line into Bothering My Child, so I gave her a smile that didn’t reach my eyes and told her we understood. Translation: Thank you, now go away.

I thought that settled the matter. Nope. The staff brought out Barbara’s order. That prompted her to scurry back to her table and begin the process of arranging her plate, drink, plastic cutlery, etc. OK fine. None of my business. Barbara was in my line of sight, so watching her was something I couldn’t really avoid doing. That’s what helped me spot the problem when it happened.

Barbara’s show came on set #3. She cranked up the volume so high it intruded on all the other sets and on general conversation. Other people started giving Barbara annoyed looks. To say she was oblivious is an understatement. The way she sat in her chair, leaning forward and hanging on every word spoken by the main characters, told me this show was really important to her. Again, OK fine. We had the close captioning on our set, so TYB kept watching his show and didn’t seem to mind. He did turn the volume up a little bit.

Barbara aimed the remote she was using at “our set” and dragged the volume down to nothing.

Not OK. Trying to be a grown-up about this, I let myself assume Barbara did not know that each remote can affect the other sets. TYB set the volume at the polite level.

Barbara promptly turned it down again.

When this happened a third time, I was more than ready to tell this woman off.

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Fortunately, I’ve learned to take a breath and weigh my options. TYB was done eating. It was time to move on. This particular TV show seemed to be very important to Barbara. Maybe I was witnessing what amounted to a Big Night Out for her. It’s also possible she did not connect turning down the volume on #3 with having any impact on us. Keeping these thoughts in mind, all I did was return the #4 remote to the guy at the register. He glanced over my shoulder at Barbara, sighed, and rolled his eyes. Clearly this was a regular event.

People do have issues. Sometimes those people are also rude. Is it worth it to call them on it? I could see Barbara had a genuine problem of some sort. In all fairness, I must say she did make an effort to be polite and reasonable. Now I know what might happen if and when we cross paths at the pizza parlor again.

Times are hard. In the big picture, this incident was odd and irritating, but really no big deal. It costs me nothing to be charitable to people who are probably just doing the best they can.

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Filed under autism, charity, Eastern Orthodox Christianity, Food, frustration, neurodiversity, parenting, perspective, Special needs, therapy

Nevertheless, I Persisted


by Lillian Csernica on December 3, 2018

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Hi there. I’ve tried at least twice to write blog posts since last we met. Got interrupted, fell asleep, had family crises. Never a dull moment.

People who aren’t all that familiar with writing think it’s a great job you can do at home whenever you feel like it. For those of us who are regular, habitual writers, it’s often like that one nightmare where no matter how hard you run, you can never quite reach the thing you’re after. We struggle to find or make the time to write. Then we struggle to produce our desired word count. We sit there second-guessing ourselves, and that’s before the actual editing process starts. Then we rinse and repeat, pretty much every single day.

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NaNoWriMo — Yes, I participated this year. What’s more, I am now the Municipal Liaison for the Santa Cruz County Region, along with a nice woman who handles the UCSC campus which is a city unto itself. This meant I hosted the Kick Off Party, I was there for the Tuesday night write-ins at the library, and I organized the final celebration. Details below. Did I win? Yes I did. 50, 141 words written mostly by hand in my notebook at my favorite Peet’s. So now there is indeed a novel in the Kyoto Steampunk universe.

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Training two new aides for Michael — We have been fortunate enough to hire a second RN and two new aides for Michael. Now that he’s out of school, he needs people to help him fill his day. There are no day programs available to accommodate someone as medically fragile as he is. Michael is a grown man now, and my joints aren’t getting any younger. I am deeply grateful for all the assistance we receive.

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Mom in the hospital, then heart surgery — My mother has been in the hospital for weeks now. She has Stage 4 kidney failure. Home dialysis never did go right. The MDs switched her to hemodialysis after the whole ER panic in August. Unfortunately, MRSA is a tenacious affliction. In the course of treating that, the cardiologist discovered Mom had a weak mitral valve in her heart. This led to a twelve hour surgery to replace the valve. Mom is about to turn 82 come January. I have no words to describe how frightened and stressed out I’ve been during all this. Mom is improving, but it’s at an incremental pace.

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The Night Of Writing Dangerously — The big NaNoWriMo fundraiser. Thanks to the generous donations of my writer friends, I raised the required amount to attend NOWD. What a blast. I drove to San Francisco, found my $12 parking space (thank you, SpotHero!), and made it to the Julia Morgan Ballroom on time. The next eight hours were full of writing and food and jokes and prizes and meeting other writers. I needed a great night out and this was definitely it.

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Thanksgiving — With Mom in the hospital, this was a bittersweet event. She wasn’t at her usual seat at the table. She didn’t make us all wait while she took photos of the food sitting there on the table getting cold. She didn’t make us pose and then sit there until our smiles wilted, resulting in the usual expressions of mild sedation. Those habits might annoy me, but they’re still part of our family tradition, dysfunctional though it may be. We did have a great dinner, cooked by my husband. And I am very thankful Mom is still with us.

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John’s cake looked better.

John’s birthday — Given that we were running back and forth to the hospital and taking care of Michael (fewer caregivers on the weekend, especially major holidays), we stretched John’s birthday out from Friday through Sunday. Chris took him to Dave & Buster’s on Friday. I took him to see Fantastic Beasts: The Crimes of Grindelwald on Saturday along with various other fun stops. On Sunday we had his party with his custom made birthday cake and a pile of presents. My baby is now 20 years old. Next year, Chris plans to take John to Las Vegas.

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The Thank God It’s Over party (NaNoWriMo) — Once again I dressed up and headed out with my bag of NaNoWriMo swag and the prizes for the Bingo sheets we all filled out and various other little mementoes of the month’s adventures. Woodstock Pizza in Santa Cruz is great. The heaters out on the patio kept us cozy while we ate and drank and read from our novels and made the people sitting nearby wonder who all these crazy people were. NaNoWriMo is my happy place in the midst of all the stress I live with daily.

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Mercury might be in retrograde right now, but we did it. Every single one of us who did our best during NaNoWriMo is a winner. I’m exhausted, and I’m still worried, of course, but life is good.

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Coming up next: It’s time to answer this year’s letters to Santa Claus! I already have eight waiting for me!
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How Writers Dress for Success


by Lillian Csernica on August 6, 2018

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On days when I’m not going to be leaving the house, I observe the time-honored tradition of working in my Bathrobe. By the end of the day I’ve usually accumulated an interesting variety of odds and ends in the pockets.

In my right pocket, where things most often end up, I have my comb, two small butterfly paper clips, an unopened alcohol wipe, and a green plastic fly.

In my left pocket, where I carry more important items, my SFWA secret decoder ring awaits being used on relevant emails.

My nightstand is littered with the bits and pieces I pull out of my pockets before I go to bed at night. I’ve learned to make a ritual of this. There’s nothing like a few harsh metallic noises coming from the washer or dryer to cause the Spousal Unit unwelcome distress.

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There are different schools of thought on how writers should suit up for their daily work count. Some dress as if they were going to the office, because that is what they are doing. Some dress in a manner that helps them connect with the material they’re working on. I find that idea entertaining. If I were to dress in a manner suitable for the heroine of my current novel, I’d be wearing a yukata and zori. For the short story in progress, Victorian attire of the 1880s. Of the two I’d choose the yukata for summer comfort and ease of movement. I’ve worn corsets, but I confess I’m not a big fan of steel boning.

Pro tip: Nothing says we have to look like the back of the book photo all the time.

Back to the Bathrobe. Built for comfort, if not for style. When I’m writing, I want no distractions. If my shoes annoy me, I take them off. If the clip in my hair isn’t comfortable, out it goes. I’ve never carried this idea to its ultimate extreme, largely because I do most of my writing either at my favorite coffeehouse out in public, or here at home on the living room couch. Neither is an appropriate context for creating while I’m in my birthday suit.

I find that I do my best work when I’m comfortable. This means more than just wearing slippers and sitting in a comfy chair, although those can be important elements. I can’t write when I’m hungry. I really can’t concentrate when my blood sugar is low. I need a certain amount of background noise to help me focus. I don’t mind being a little cold, but I can’t stand being too hot. Total silence makes me jumpy, because the selective hearing I’ve developed over 22 years of having a medically fragile son keeps me alert for the sounds I should be hearing.

All this explains why I hang out at my local Peet’s Coffee so much. It provides everything I need to do good work.

There’s one really great aspect of the Bathrobe. Remember when we were little kids and pinned towels around our necks for capes? Or we used those old sheets to make a pillow fort? We could be anybody in those capes. The pillow fort could be a crater on Mars or the penthouse in Tahiti. That’s what the Bathrobe does for me. Because there’s no pressure, there’s no appearance to maintain, I can relax and be whoever I need to be for that day’s writing. Let the record show I own three different bathrobes.

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In her article about Authors and the Clothes They Wore by Terry Newman, Vanessa Friedman writes:

As Ms. Newman discovered, Virginia Woolf actually had a name for this awareness: “frock consciousness.” She used it to refer to the way she employed clothing to denote character, and changes in character, particularly as they applied to her book “Mrs. Dalloway.” But really, it’s a (not surprisingly) perfect turn of phrase that could apply to us all.

What do you wear when you write? Do you have a favorite set of writing clothes?

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Filed under classics, creativity, editing, Family, fantasy, Fiction, history, Humor, Lillian Csernica, marriage, research, romance, special education, Special needs, Writing

How to Get Everything Done At Once


by Lillian Csernica on July 26, 2018

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People ask me how I manage to keep writing and selling fiction given everything I have going on at home with my two special needs sons. Some days I don’t get any writing done. That’s not a happy feeling. I have to make sure I get it done. That means on some days I shove everything else to the side, grab the laptop or the notebook, and just WRITE. God help anybody who interrupts me.

What is the secret of my success?

I make To Do lists. I mean one for each separate areas of my life. Here are the categories I work with every day:

Son #1 — He’s the medically fragile one who takes more or less eleven different medications each day, along with nebulizer treatments and other health-related activities.

Son #2 — School’s out for him, so he’s in need of something fun to do each day. Given that he has ASD, he’d spend every waking moment playing with something electronic. It’s important to get him out of the house. He often rides along with me when I go to appointments or run errands.

Writing — This gets done in my favorite coffeehouse, during downtime in waiting rooms, and here at home late at night. You will learn to write when you can, wherever you can. It’s the only way to get it done.

Phone calls — Doctors, medical equipment suppliers, the pharmacy, and anybody else with whom I do not communicate by email.

Appointments — We have lots of these. I have two weekly appointments. Regular check-ups for the boys come around every six to twelve months, which doesn’t seem like a lot until they show up right in the middle of a packed week. My writer’s group meets once a month. I have conventions coming up. I must also keep in mind when my husband plans trips and when other people in the household will be away. Big impact on the caregiver schedule.

Errands — The usual. Groceries, picking up meds, whatever prep I have to do for conventions in terms of PR materials, taking Son #2 on his outings, etc.

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Once the To Do lists are made, I begin to prioritize.

What absolutely has to get done today?

Let’s take tomorrow as an example. I have to be up at 6 a.m. with Son #1 for his morning routine. The RN is coming to relieve me in time for me to rush off to my first appointment of the day. When that’s done I’ll have about thirty minutes before I need to drive to the second appointment of the day. Then I have to rush back home and fill in as caregiver until the regularly scheduled person comes on duty. That will give me five hours of time with Son #1 during which he gets two separate doses of medication and one breathing treatment.

During those five hours I might be able to write, depending on how my son is doing. He’s been having more frequent seizures this week, so my attention span has to be focused mainly on him. I might be able to get some reading in, since I can glance up as him at I turn pages, which I do at a pretty quick pace.

Once the aide comes on duty, I have more freedom, but this is the nonmedical aide so I have to draw all the doses of medication Son #1 gets between 5:30 p.m. and 10:30 p.m. I will probably sit on the couch in the living room with my laptop and catch up on email, or I’ll do the writing that still needs to be done. Lately I’m writing by hand in spiral notebooks because I seem to write more quickly and in a better creative trance.

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And, last but not least, I have to spend some quality time with my cats. Around 10 p.m. two of them get the rips and demand a game of chase-the-ribbon or catch-the-mousie. Then one of them claims my lap while the other sits on the back of the couch right behind my head.

Figure out your categories. Pick the one most important item in each. Those items go on a new list. Can you make them work out together on the same day? If not, keep going up and down the lists until you can get at least one thing on each list done in the course of one day.

It’s all progress. It all counts. The tasks do not have to be the same size or of the same importance. What matters is getting them done. If this method gets to be too much, scale back your efforts. Consider only the three most important categories. Delegate more tasks. Say no more often. Protect your time.

Most of all, make sure you WRITE. Ten minutes, thirty minutes, two hours, whatever you can manage. Just do it, and do it every single day.

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Three Reasons Why June is A Great Month for Writing


by Lillian Csernica on June 8, 2018

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All good stories begin with a change in the status quo, the problem situation, that plunges the main character into turmoil. Change is the writer’s best friend, and June is a month full of changes. In many cultures, the biggest changes in a person’s life are marked by rites of passage. June is a great month for two very important rites:

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Graduation

The transition from one level of education to another is always significant. Kindergarten to elementary school, from there to middle school, and then the big move to high school as the launch pad for college. Mainstream students deserve to celebrate their achievements, those who struggle and those who shine. Today’s world places so many demands on children while at the same time burdening them with so many distractions. It’s a wonder so many students can focus long enough to do so well.

Yesterday my family attended the graduation ceremony for my older son Michael. At 22 he has now aged out of the school district’s post-graduate program for seniors in the county special education class. This means leaving the learning environment and the network of teachers, aides, therapists, bus drivers, and the registered nurse who have all been part of Michael’s life since he was 3 years old.

With the help of his classroom aide and one of his adaptive communication devices, Michael made a speech that included a little bit about himself, two of his favorite jokes, and a warm thank you to all the people who have helped him come so far. When you live in the world of special needs families, you celebrate every sign of progress no matter how small. Michael and the 6 other students also graduating today demonstrated the passion, dedication, patience, and love present in the parents, teachers, and administrators gathered there. So many stories worthy of being told.

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Weddings

June is a favorite month for weddings. Clear skies, lots of sunshine, and plenty of flowers make for ideal conditions, indoor or outdoor. Summer weather also means a wider selection of honeymoon destinations. The happy couple is about to embark on a whole new phase of their lives together.  There are all those people, the family and friends, who wish the pair getting married all the best. Then there are those people who…don’t.

I’m of an age now where I’ve been to several weddings. As a writer I know that any large event that brings together intense emotion, lots of money, family dynamics, and alcohol is going to bring out the best and the worst in people. Given that most weddings also drag God and the Law into the situation, there’s so much pressure to meet so many expectations. Put all this together and what do you get? Conflict! The key element of any strong story.

Here’s a quick list of my favorite wedding movies:

My Big Fat Greek Wedding

Muriel’s Wedding

Four Weddings and a Funeral

Shrek

Pride and Prejudice (Yes, the one with Colin Firth.)

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The Summer Solstice

Summer is the season of freedom. Long days, short nights, no school, family vacations. We can all call to mind a family vacation where at least one thing didn’t go as planned, leading to the kind of drama that makes a story worth telling.

The Solstice itself is celebrated all over the world. No matter how far we get in terms of advanced technology, everybody wants to make sure the sun keeps rising and setting. The summer solstice marks the waning of the sun. No wonder summer is full of so much partying! Midsummer Eve is known for being one of those occasions when the veil between the worlds grows thin, much like Halloween. Gateways, boundaries, borders, and other points of transition are all natural settings for big changes and great stories.

For more on the folklore attached to the summer solstice, click here.

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Filed under classics, creativity, fairy tales, Family, family tradition, Fiction, Halloween, Lillian Csernica, marriage, mother, parenting, romance, special education, Special needs, travel, Writing

#blogchallenge: Fortune Cookie #20


by Lillian Csernica on May 20, 2018

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Today’s fortune says:

A loved one is of utmost importance at this time.

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I sat there on the generic brown couch, staring up at the TV screen mounted high in one corner. Hospitals. Designed to give you a crick in the neck. You were lying in bed looking up at the TV, or you were sitting in some “Family Lounge” praying the news was good or at least bearable.

It was four a.m. on a Tuesday in late April. I sat in the “Family Lounge” trying not to cry. One of the CNAs, Delia, slept on the other couch. Using her lunch break to take a nap. I didn’t want to wake her. She’d rather sleep than eat. That said a lot about how little sleep she generally got.

I knew all about sleep deprivation. Tommy was back in the hospital again. Another infection. The immune system of a premature baby isn’t very strong. Tommy had made it to age ten, but even so, none of his systems were all that strong. He held on. He kept breathing. His heart kept beating. His organs continued to develop. The doctors were amazed. If Tommy’s life had been a song, that would have been the chorus. The doctors were amazed. And so I sat there, recharging my phone, watching the minute hand of the clock move or staring at the blank black mirror of the plasma screen TV.

Tommy had to live, to go on surviving. If he didn’t, that would finish me. Losing Bobby had been hard enough. Eighteen weeks. Early rupture. He was fine. It was me, my body, that couldn’t carry him to term. I lost him. That horrible moment when I really understood the emptiness where he had been. He’d just started kicking. I was happy, really happy, for the first time in years. That lasted two days, maybe three. Then my water broke too soon, and the nightmare began.

I knew a lot about hospitals. I could write a Lonely Planet guidebook comparing the beds, the food in the cafeterias, what there was to do in the surrounding neighborhoods. I always knew where to find a bookstore, or at least a drugstore with a news stand. When Tommy had to spend a whole summer in the Pediatric Intensive Care Unit, I blew through at least a dozen books. When I finished them I’d leave some for any of the RNs who wanted them.

The clock said five a.m. Delia’s phone alarm went off. She sat up, smoothed her hair, tugged at her scrubs, then gave me that smile that was part pity and part professional compassion. She went back to work. The Infectious Disease unit. What fun. I’d want to burn my clothes and throw away my shoes every single night.

Two hours until shift change. The blood draws usually started at six a.m. so the results were ready in time for Rounds. That was a three hour window of muscle-knotting tension spent constantly on the alert for the five or ten minutes of the specialist’s time. Were the test results good? Did they show progress? Were we a day closer to discharge? The doctors were like Santa Claus. They appeared, dropped off their packets of information, then hurried on. So many more houses to visit, so many more patients to see. Instead of eight tiny reindeer, they had residents and physician’s assistants and sometimes a flock of student nurses who stood out like a flock of geese in their white scrubs. I often wondered if they made the students wear white scrubs so any mistake would leave a telltale mark. There are a lot of bodily fluids splashing around in hospitals, especially in the Infectious Disease unit.

Then came the empty hours until lunchtime. Linen changes. Emptying the catheter bag. Making sure Tommy’s pain levels were still under good control. Just awake enough to be bored, too worn out to do anything about it. I spent a lot of time reading to him, trying to find something entertaining on the hospital’s available TV channels, or just sitting there watching him sleep. It’s a terrible thing when you’re happy to see your child lying there unconscious because it’s the preferable alternative.

Stephen, my husband and Tommy’s father, spent his days at work maintaining the insurance coverage, paying the endless medical bills, keeping our life moving forward until that time when Tommy could come home again. He did his part and I did mine as I sat there alone, watching the empty black mirror of the big plasma screen.

END

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Filed under Blog challenges, doctors, Family, frustration, hospital, mother, parenting, PICU, Special needs, specialists, worry, Writing

Moments from the Women’s March


by Lillian Csernica on January 23, 2018

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Joining the march. Stepping into the flow, holding my sign up high, seeing the people lining the route with their phones out, taking photos and making videos. Recording a piece of history. Thirty thousand people, according to the Santa Cruz Police Department.

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A boy not more than ten years old marching ahead of me, holding up a cardboard sign that read, “I’d rather be home building LEGOs, but I have to build #TheResistance.

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Two older women carried a banner with #MeToo on it. As we passed by, the two women offered people Sharpies so they could sign the banner. Only recently did I realize that I had faced sexual harassment several times in the workplace. I signed that banner!

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A man carried a large piece of cardboard. On it had been painted the figure of a judge, complete with white wig and holding the Scales. The empty oval where the face should be allowed anyone to stand behind the cardboard and have a photo taken, proclaiming her or him “A Future Supreme Court Justice.” How cool is that?

Chanting “Hey, hey! Oh no! Donald Trump has got to GO!”

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Our destination was the Louden Nelson Community Center. Inside on the stage stood the American Shrine. You can see from the photo that it was just breathtaking.

While I was inside the Center, I crossed paths with a woman and her son, who had Downs Syndrome. The mother asked if she could take a photo of me holding my sign. Sure thing! Then she asked if I would mind taking a photo of her and her son holding my sign. I tell you, that nearly brought me to tears.

Later, as I walked a few blocks back  to where I’d parked my car, drivers saw my sign. Horns honked and I saw some thumbs-up as people applauded equal rights for people with special needs.

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On my way home, I stopped at Peet’s for a Green Tea Mojito, one of the few guilty pleasures I can get away with on my weight loss program. I had my Women’s March T shirt on, which got me into conversations with at least three people.

My favorite barista was on duty. She wanted to see my sign, so I got it out of the trunk and brought it inside to show her. She said she didn’t know many people with special needs, so equal rights for them wasn’t something she’d thought about. She was glad to see the sign and know about the issue. Accessibility and health care are SO important these days, now more than ever.

I need more exercise. Thanks to the Women’s March 2018, I exercised my constitutional rights to freedom of speech and freedom of assembly. When it’s time for the elections this year, I will once again make my voice heard by voting.

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Filed under autism, charity, dreams, Family, family tradition, frustration, Goals, history, Lillian Csernica, memoirs, mother, neurodiversity, perspective, Special needs, Writing

March Like You Mean It


by Lillian Csernica on January 16, 2018

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This coming Saturday, January 20th, all over the world women and their allies will march together to support each other and to protest all the wrong things happening in our world right now.

This is my first march, so I asked people with experience what I should keep in mind, what to wear and what to bring.

I’m here in Northern California, with its weather and its laws. Some of the suggestions given to me may not apply where you are. Still, I do want to share this information, especially with those people who are also about to experience their first march. Here is a compilation of the advice I’ve received:

Precautions:

  • Find someone willing to post bail. In my case, this would be my husband.
  • Write the phone number of said person on my arm in permanent ink, just in case my phone is confiscated or something else happens to it.
  • Stay with your group. If there are anti-protest people present, they may try to provoke confrontations. Do not let them corner you, cut you off, or get you alone.
  • Be ready to take videos.
  • Maintain situational awareness. That means know who is around you, where you’re at, and keep alert for signs of trouble.
  • Schedule check-in times.
  • Have a panic word ready so your support people know you can’t get to your car and you need to be picked up.

What to wear:

  • Most comfortable shoes
  • Layered clothing
  • A hat for shade and/or warmth
  • Sunscreen

Supplies:

  • Water
  • Snacks
  • Mini First Aid kit
  • A spare pair of glasses (if you wear them)
  • Face wipes
  • Electrolyte drink, powder, or tablets
  • Vitamin C and/or Zinc to combat potential airborne illnesses

Optional, but encouraged:

A sign. Our local law permits cardboard or posterboard weight signs mounted on a “stake” made from the cardboad tubing inside paper towels or rolls of gift wrap.

Need some inspiration? Check out these signs from last year.

 

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The One Writing Skill You Must Have


by Lillian Csernica on December 11, 2017

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Here we are in the holiday season. This time of year will stress out anybody, even those people lucky enough to have a “normal” family life. Writers often come from dysfunctional families. Writers often have mental health issues. Put it all together and the holiday season can be quite a gauntlet to run, between day jobs, holiday preparations, family gatherings, and the desperate struggle for time and space write.

My therapist taught me a skill that I will now pass along to you. This skill is designed to buy you the mental and emotional space you need to survive when you find yourself overwhelmed. Your mileage may vary, but give it a try. Three simple words:

Achieve literary distance.

How does one do this? Here’s my method. I always have my tote bag with me. At the moment it contains four notebooks, two manuscripts, one of those zippered pouches for pens, and a few other odds and ends. I take the tote bag everywhere. When life gets too intense, I pull out a notebook and a pen. If I’m stuck in a line, I spot the most interesting people and jot down quick lists of their notable physical and behavioral traits. If I’m in a waiting room, I might write a scene involving two of the people waiting there also.

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The point here is to derail our anxiety by making our trains of thought switch tracks. Becoming consciously more observant puts us into a more objective state of mind. Sometimes what we really need is to get out of our own heads. By calling on the skills that help us achieve literary distance, we can at least get out of the Anxiety Attic and go hang out in the Creativity Corner.  When we deliberately shift our focus outward, we may very well lower our anxiety levels.

I know this works for me. I get all stressed out about being on time, getting everything done according to my To Do list, or I’m all knotted up mentally because of a conflict with a family member.  When I achieve literary distance, that helps me step back, take that deep breath, connect pen to paper, and re-establish a calmer, more flexible state of mind.

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Make this skill work for you. If you like texting ideas on the Notepad function of your phone, go for it. If you need a blank journal with no lines and a few broken crayons, more power to you. If you just want to sit in a comfy spot and take some mental notes along with a few deep breaths, that’s good too.

Writing is our superpower. We can use it to rescue ourselves.

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Filed under Christmas, creativity, Depression, editing, Family, Fiction, frustration, Lillian Csernica, neurodiversity, Special needs, therapy, Writing