Category Archives: Special needs

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

BayCon 2022 Panel Schedule


by Lillian Csernica on June 15, 2022

I am delighted to announce that I will be appearing in person at BayCon 2022! It’s been a long three years. I can’t wait to participate in these panels. BayCon has some really exciting programming this year!

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Discover Your Process

1 Jul 2022, Friday 14:30 – 16:00, Synergy 4 (San Mateo Marriott)

You have ideas. You want to get them out of your mind and into the physical world. How do you do that? Join the panel as they discuss how they came to understand their creative processes.

Lillian Csernica (Sense of Wonder Press) (M), Steven Barnes, M. Todd Gallowglas (Gallowglas Army) (M), Scott Bradley

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Autism/Gender States

1 Jul 2022, Friday 16:00 – 17:30, Synergy 1 (San Mateo Marriott)

New work suggests there’s a correlation between Autism Spectrum Disorder and Transgender/Nonbinary flavors of gender. But correlation is not causation. So is a link? And it now looks like female autistics are massively underdiagnosed, so what does that mean for nonbinary folks who may need help with ‘subclinical’ ASD issues? What about ADHD? Is there another link there that’s been overlooked?

Lillian Csernica (Sense of Wonder Press), Pat MacEwen (M), John Blaker

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Confessions of a Slush Pile Reader

2 Jul 2022, Saturday 10:00 – 11:30, Connect 5 (San Mateo Marriott)

Editors and slush readers discuss what gets a story rejected and what they look for in a story to be considered for publications. Does and don’ts of cover and query letters can also be covered.

Rebecca Inch-Partridge (M), Emerian Rich (Self and HorrorAddicts), Lillian Csernica (Sense of Wonder Press)

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Experiencing pestilence, war, and other significant trauma affects our lives in multiple ways.

3 Jul 2022, Sunday 10:00 – 11:30, Synergy 1 (San Mateo Marriott)

How does it affect what we write? Can harnessing personal sorrow and stress help us write closer to our main characters?

Matt Maxwell (Highway 62 Press), Laurel Anne Hill (M), Lillian Csernica (Sense of Wonder Press), Scott Bradley

Handicapped Parking

3 Jul 2022, Sunday 11:30 – 13:00, Engage (San Mateo Marriott)

From the invalid chair to the mobile exoskeleton, people have needed mobility devices to replace abilities lost to birth defects, disease, accidents and war.

Lillian Csernica (Sense of Wonder Press) (M), Gideon Marcus (Galactic Journey), Colin Fisk

We’re Not In Kansas Anymore

4 Jul 2022, Monday 10:00 – 11:30, Convene 1 (San Mateo Marriott)

Exotic locales challenge writers to get readers up to speed while keeping the story going. What weird settings have our panelists used and how did they solve the problem—well enough for the editor to buy, anyway.

Jay Hartlove (JayWrites Productions), C. Sanford Lowe (C Sanford Lowe) (M), Lillian Csernica (Sense of Wonder Press)

Come find me at BayCon and get a sticker for your badge!

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Filed under autism, Conventions, creativity, editing, fantasy, Fiction, Goals, historical fiction, history, Japan, Kyoto, neurodiversity, parenting, perspective, publication, research, science fiction, Special needs, steampunk, sword and sorcery, travel, Writing

Q is for Quandary


by Lillian Csernica on April 20, 2022

Lexico.com defines quandary as “A state of perplexity or uncertainty over what to do in a difficult situation.” This is a perfect description of the difficulties I’ve faced when trying to balance a career as a professional writer with being the mother of two special needs boys.

In 1993 I joined the Science Fiction and Fantasy Writers Association as an Active Member. In 1998 my older boy Michael came into the world at only 23 weeks. That he survived the next three and a half months in the hospital is nothing short of miraculous. The writing I accomplished during that time consisted mainly of the notes I kept in pretty hardback journals, documenting Michael’s growth, his tiny but meaningful milestones, the tests and surgeries and growing list of medications. Once Michael was allowed to come home, life became crowded with doctor appointments and physical therapy sessions. I tried to make the best use of the time available, editing manuscripts while in transit to the various appointments.

In 1998 John came along. Now I had two babies to care for. At that time it was just me while my husband was at work during the day. This is when I developed the habit of writing at night after the boys were asleep. Not the best plan when I wasn’t getting much sleep anyway. John was getting better and better at climbing out of his crib. At age two Michael developed seizure disorder, so I lived with one ear listening for any strange sound that might indicate John had escaped or Michael might be in distress. It’s very difficult to achieve the state of creative trance necessary for writing when one’s attention is constantly divided.

When Michael turned three and was eligible for the Early Start program, one of the benefits was nursing care. Thanks to the RNs who helped out and the support of my family, I wrote Ship Of Dreams. Getting that manuscript research took two solid years, then writing it meant daily labor. I suffered a disk crash that cost me two months’ work. (Words of wisdom: “Finish it!” and “Back it up!”) I found a literary agent who sold the book to a publisher. I’d been having some success with selling short stories and writing nonfiction pieces.

This might sound wonderful, and it was, but it meant struggling against my own fatigue, emotional exhaustion, and what I later learned were the symptoms of PTSD. When your brain already feels like dead coral, it’s almost impossible to summon up the energy needed to string words together. By that I meant just making sense when you’re talking to another person, never mind the effort required for creative writing. How was I going to keep writing? How was I going to complete projects, edit them, and do the marketing work?

There have been many times when I’ve wanted to “do it later.” As many wise people have said, later never comes. Today is tomorrow. I asked myself, “How badly do you want this? How badly do you want to work toward a Hugo, a Nebula, a World Fantasy Award?” The answers to those questions drove me to find ways to do the work even while attending doctor appointments, during hospital stays for Michael, and then facing John’s difficulties.

John had been hitting all the developmental milestones up until age four. We knew he had speech delay. The speech therapist was the first one to suggest we get John evaluated by a neurologist. The neurologist diagnosed John with Autistic Spectrum Disorder. At that time I knew nothing about “autism” other than the really drastic examples most people think of when they heard that word. Mind you, this was twenty years ago when a lot less was known about neurodiversity. I was in shock, frightened, depressed, and overwhelmed. Managing Michael’s care was already a complex challenge. Now John’s doctor and therapist appointments would have to be shoehorned into an already tight schedule. How on earth was I going to maintain a writing career when I couldn’t even manage a regular night’s sleep?

So I learned how to write whenever I had a few minutes. Free writing. Word sprints. Call it what you will. These bursts of writing are manageable, fun, and can be fit into a car ride, sitting in a waiting room, while having a meal in the hospital cafeteria. It’s not always comfortable, and it’s not easy, but practice promotes adaptation. I’ve written a total of seven novels and quite a few short stories. Now that some family issues and the first shock of the pandemic have settled down somewhat, I hope to move forward with editing and polishing these novels.

Living in today’s world makes it even harder to maintain a creative life. So many of us have had to take on the role of caregiver to a family member. Believe me when I tell you it’s essential to carve out some time for yourself, and for your creative work. Somewhere in your waking hours there will be fifteen minutes, thirty minutes, maybe even a whole hour. Use it. Sit down and take a good look at your daily schedule. You may find you have more time than you realize, it’s just a matter of making choices about what you spend that time doing.

Creative success. How badly do you want it?

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Filed under #atozchallenge, autism, Blog challenges, creativity, doctors, editing, Family, Fiction, frustration, Goals, historical fiction, hospital, memoirs, mother, neurodiversity, parenting, publication, research, science fiction, special education, Special needs, specialists, therapy, worry, Writing

I is for Insomia


by Lillian Csernica on April 9, 2022

When I was a teenager I loved to sleep. Stay up late, sleep late, linger in bed, the very definition of a layabout. Science now tells us teenagers need a lot of sleep because they’re growing both physically and mentally. Adolescence takes a heavy toll on the body and the mind. I’ll vouch for that. Living through middle school meant two of the worst years of my life. Sleep as a method of escaping reality became a coping mechanism. I had what the psychologists refer to as “peer problems.” I grew up alone due to my brother and sister both leaving home when I was only seven years old. Now I was in middle school, twelve years old, and my parents had just gone through a really messy, bitter divorce. The divorce meant Dad was gone and Mom had to go back to work, so I was a latchkey kid before the term had been invented. I was miserable. I could escape that only when I was sleeping.

For somebody who liked to sleep so much, how did I develop all three forms of insomnia associated with clinical depression? It’s been a long and stressful road from twelve to fifty-six, and life wasn’t exactly all rainbows and unicorns when I was a little kid. Just to be clear, let me explain the three separate forms of insomnia:

1. I have difficulty getting to sleep.

2. I have difficulty staying asleep.

3. If something wakes me up, I can’t get back to sleep.

Do I take medication for insomnia? Oh yes. Does the medication I take work? Yes and no. If I avoid caffeine, don’t eat the wrong foods and don’t eat too late in the evening, take my pills on an empty stomach and then go straight to bed, I might have an even chance of actually dozing off in a reasonable amount of time. All of that is referred to as good “sleep hygiene.” In general, my sleep hygiene is poor. I stay up too late. That’s when the house is quite enough for me to write. I watch exciting mysteries or detective shows or supernatural movies on TV. Many of these self-defeating behaviors are tied into my depression. Some nights I’m just too agitated to sleep and the medication makes no difference at all. Then there’s the problem of my body’s tendency to acclimate to medication within about four months. Am I still depressed? Oh yes. Will I ever be cured? There is no cure for Major Depressive Disorder. There is only support through medication and therapy, along with healthy living habits and a determination to keep on climbing up out of the darkness.

I know these things for sure:

Sleep deprivation makes depression worse and causes weight gain.

Depression will make weight gain worse.

Weight gain will make depression worse.

See how easy it is to get stuck in the labyrinth with no way out? The answer is sleep. When I’m asleep, my body is restoring itself and my mind processes what’s going on at various levels of my consciousness. That processing is essential. Picture your mind as one big file drawer. When you get enough sleep, all the files are in the right order and new material gets filed and cross-referenced appropriately. When you don’t get enough sleep, information gets filed incorrectly, memory doesn’t work right, and if the sleep deprivation goes on long enough, what you end up with is that file drawer yanked out, turned upside down, and everything dumped on the floor in an impossible mess. Sometimes the mess is so bad you have what the psychiatrists refer to as a “psychotic break.”

Bear in mind I’m talking about myself here. Different people need different amounts of sleep. Newborns do very little but eat and sleep. Teenagers need a lot of sleep not because they’re lazy but because of their mental and physical growth rates. Older people might not need as much sleep as people in their thirties or forties. Your mileage may vary. All I know is I need more sleep than I get, and that’s partly due to my own bad habits. It’s important to be aware of that. The more control I have over the causes of my depression, the more I can fight it. The more I keep up the fight, the more often I win. It’s when I forget that I can stand up against the depression that it takes over. Fatigue, chronic pain, the endless stress of two special needs children, and the pandemic make it very difficult to keep moving forward. Cognitive Behavioral Therapy is my friend.

Right now I’m sitting here at 1:30 a.m. It’s been another long day in a long week. Before I go to sleep, I will write down at least three good things that happened today. I will light that candle and keep it lit against the darkness of depression.

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Filed under #atozchallenge, bad movies, Blog challenges, Depression, doctors, Family, frustration, Goals, home town, memoirs, mother, parenting, research, Special needs, specialneeds, therapy, worry, Writing

All Together Now


by Lillian Csernica on June 18, 2020

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Hello again. I come to you from the throes of the pandemic here in California. Our Governor Gavin Newsom now requires all of us (with appropriate exceptions) to wear masks when we’re out in public. Not just when we’re going into stores or other essential activities, but all the time. I’m delighted. As the mother of a medically fragile child, I don’t care how low the odds of infection might be. Any odds are too high when it comes to risking my son’s life.

This week I attended a writing class online with my dear teacher Andy Couturier, author of Writing Open the Mind and A Different Kind of Luxury: Japanese Lessons in Simple Living and Inner Abundance. Thanks to the writing exercises Andy taught us, I created a piece of writing that I’d like to share with you.

The world has changed so much. Four months. Everything is different. If we know nothing else, we know we’re not alone in this world. We can kill each other by being careless. We can save each other by being mindful. We can unite, be strong, say a kind word. We can use that word, make signs, write on walls, spread it across the Internet, wear it on a T shirt, paint it on a car window. We can spread that kind word.

We can make the world better. Life is hard, times are tough, but we can make this pandemic a chance to heal more than just torn up lungs and traumatized minds. We can be the people we needed. We can delay the achievement of our private glories as we come together to build a world where we all can thrive.

I don’t know much, but I do know our hearts are all the same color. We are all the same in our component parts. Blood, breath, bone, spirit. We are all humanity. Bring back the Rainbow Coalition. Bring back the songs that we all sang together.

I believe this. I believe every word of it. I’m just one person. Sometimes that’s all it takes. Let’s start helping each other. We could all use a little more kindness.

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Filed under Family, Goals, Lillian Csernica, love, memoirs, parenting, special education, Special needs, worry, Writing

A Thousand Thanks


by Lillian Csernica on April 8, 2020

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April is Autism Awareness Month. As you can see, I’ve “gone blue” in support of ASD children and adults everywhere. As the T shirt says:

It takes a special mom to know what a child cannot say.

Both of my sons have difficulties with their verbal skills. John has speech delay. Michael doesn’t not speak at all, aside from some vigorous vocalizing. I am fortunate in that words seem to be what I’m good at in this life. Public speaking, sales, writing fiction and nonfiction. I had no idea my ability with words would stand me in such good stead given how hard it is for both of my boys to communicate.

What really keeps me going right now is the generosity and support of my community. By that I mean all of you folks reading this. All the folks who have donated to the GoFundMe, Safeguarding My Special Needs Sons. As of today, the total amount donated is over $3,000. In these strange, stressful, and scary times, the weight of enduring the divorce process is crushing me. I have to stay strong for my boys, to help them make the most of each day.

Thank you. Thank you so much. If I could do it, I would hug every single one of you.

Please keep sharing the link to the GoFundMe. Being able to pay a good lawyer to protect my interests and my boys’ future will do so much to keep all three of us strong until we get to that brighter future we all are hoping for.

 

J reading to M

 

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Filed under autism, charity, Depression, Family, family tradition, frustration, Goals, Lillian Csernica, marriage, mother, neurodiversity, parenting, special education, Special needs, therapy, worry, Writing

Please Help My Family


by Lillian Csernica on March 25, 2020

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As you may recall, last year my sister moved out of my house and soon after that my mother passed away. The time has come to reveal the third event that made 2019 even more stressful.

I filed for divorce.

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I am one of those women who let the man take care of all the finances. This was a serious mistake. I can’t discuss the legal fine points here. Let me just say my husband has made a number of questionable decisions and went to some lengths to conceal them. As a writer I don’t make a lot of money. The royalties I do have coming in don’t amount to a lot, a fact painfully clear when I put together all my income tax information. Last year was hard on me emotionally and financially.

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Lawyers cost money, especially divorce lawyers. With that in mind, I have organized a GoFundMe. I’ve found a lawyer who will protect my interests and those of my sons. We need someone who will keep us safe against spite, vengeance, and legal maneuvering.

Please. Any donation will help me protect my boys and build a better life.

Links:

GoFundMe

Paypal: lillian@lillian-csernica.com

Venmo: Lillian Csernica

And please, share this post.

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Filed under autism, charity, Depression, Family, family tradition, frustration, Goals, marriage, mother, parenting, Special needs, worry, Writing

#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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