Category Archives: specialneeds

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

#nanowrimo Writing Interrupted


by Lillian Csernica on November 16, 2019

I don’t know about you, but I’m having an extremely difficult year. Deaths and departures. The usual endless chaos at home, making sure we have enough aides and nursing staff for Michael. Courtrooms and Emergency Rooms and making room for my writing amid all the uproar.

And now, right in the middle of #nanowrimo, my gall bladder decided to declare war.

I was going to post a gallbladder graphic here, but no.

I spent most of the week between last Friday and today at a local hospital after I took myself to the Emergency Room for really nasty stomach pains. Many tests and much painful prodding revealed that my gall bladder was well on its way to causing me serious damage.

The hospital drama blew my mind. They wanted to send me home to make an appointment with the appropriate doctor in “three or four days.”

I’ll say one thing for this year. It’s put some serious steel into my spine. I repeated back to the doctors everything they’d just told me and demanded to know how they could send me home when they KNEW a medical crisis was imminent. I don’t know if I was persuasive enough or intimidating enough or just plain loud enough. They admitted me and the surgery took place last Saturday.

They discharged me on Sunday, less than 24 hours later, with no apparent regard for me still being on the big time painkillers you can’t get outside of hospitals. I hadn’t walked the ward, my gut motility had not resumed, none of the fundamental criteria for even considering discharge status. Yes, I could breathe, and no, I wasn’t bleeding to death. Apparently those two were sufficient.

And so they sent me home. They also forgot to give me back the bag of my regular medications I’d brought from home. You never know when some of your meds won’t be available in a particular hospital. I didn’t notice the glaring absence of my meds at the time because I was busy recovering from major abdominal surgery.

Two and a half hours after my husband drove me home, he was on the phone to 911. The pain had me in such a vicious grip I could not inhale without trying to scream. In the ambulance I was in such bad shape the paramedic didn’t bother with an IV. She had me ingest liquid painkiller by the simple expedient of soaking some gauze in the liquid form, sticking it up my nose, and commanding me to inhale as hard as I could.

The Emergency Room was not happy to see me again. I’m afraid I rather lost my temper with the doctor on duty who tried to tell me the CT scan they’d just done showed everything looking fine after surgery. Why then, I asked, after you people took out the organ you claimed was causing the problem, am I now in far more intense pain?

That doctor did what I’ve seen other doctors do in similar situations, which was hand me off to the next doctor up the chain of command. This worthy gentleman read the chart, examined my surgical sites, asked me a few questions, then shook his head and said, “We sent you home too soon. I’m admitting you.”

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And so I spent Monday and Tuesday heavily medicated. They managed to lose one of my medications AGAIN, would not call the prescribing physician, and came within inches of me organizing a posse of lawyers to storm the bureaucratic barricades.

All this right in the middle of #nanowrimo. Did I get any writing done? As a matter of fact, I did. Armed with a notebook and pen provided by a writing buddy  who truly went above and beyond for me, I lay there and tried to keep my writing between the lines while this dear and treasured friend coaxed me through at least two word sprints.

My word count is currently at 14,220. I have to write 12, 452 words before midnight tonight in order to catch up. That’s 50 pages. Ouch.

I’m having a blast with these new Kyoto Steampunk stories when I can shut out everything else and concentrate. Right now I’m tired and I’m hurting and there are so many other things that needed to be done last week and five days in the hospital have left me even farther behind.

So cheer me on, people. Please. Help me get all the way to 50k.

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Filed under Depression, doctors, Family, fantasy, Fiction, historical fiction, hospital, Kyoto, parenting, specialneeds, steampunk, surgery, Writing

#atozchallenge K is for Kids


by Lillian Csernica on April 12, 2019
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by Lillian Csernica on April 12, 2019

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People told me that when I had kids, my life would never be the same.

Those people had no idea how right they were.

My son Michael was born at 23 weeks, weighing 770 grams. That’s one pound, eleven ounces. He was the size of a kitten lying across my palms. This was back in 1996. At that time the age of viability was 24 weeks, because only then would the lungs function. During every single day of the following three and a half months Michael spent in the hospital, we watched and waited to see if our baby would live or die.

Michael in knight costume2

Two and a half years later, John arrived. He went full term, a hefty eight pounds, ten ounces. During delivery, John refused to breathe. By then the hospital staff knew our family rather well, so the head of neonatology was on hand to jump start John and make sure he started life in good form. John had to spend the first week of his life in the NICU, which drove me crazy because I wanted my baby. Then, as John missed verbal milestones and showed other unusual behavior, we learned he has Autistic Spectrum Disorder.

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Now people tell me I should write about my experiences with both of my sons. I should write about battles with insurance, battles with the school district, battles with the boys themselves. I should write about all the doctors and nurses and teachers and aides I’ve worked with through two decades. I should write about what I’ve learned and what I wish I’d known.

It’s not easy to write about difficult events when you’re still in the process of living through them. Now that my boys are legal adults, they face a sharp decline in services, lack of day programs, and the ongoing insurance battles. Michael is still in just as much danger from every medical crisis. John is still learning how to handle some of his symptoms. I am their mother, their legal guardian, and their primary advocate.

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The time is coming when I will write more nonfiction. Right now, I write escapist literature because that’s what I need to write. I don’t travel as much as I’d like to because I simply can’t. In order to hang on to my dented sanity, I run away from home inside my head.

 

 

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Filed under #atozchallenge, autism, Blog challenges, Conventions, cosplay, doctors, Family, fantasy, Fiction, frustration, Goals, historical fiction, hospital, mother, neurodiversity, parenting, special education, specialneeds, travel, Writing

#atozblogchallenge F is for Finish It!


by Lillian Csernica on April 6, 2019

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I can sum up the secrets of writing success in two words: Finish it!

Everybody loves the beginning. Even when it’s difficult and you don’t know where it start. That first flush of creativity, the excitement over a new idea, can be addictive. So addictive, in fact, that when the shine of a new idea wears off and the doldrums of rewriting set in, people often abandon a project for something new.

That way lies disaster.

Most writers have several ideas sitting around in various stages of development. It’s what we do. Successful writers figure out which ideas have the most potential and invest time and effort in developing those projects. Agents won’t look at unfinished manuscripts. Editors don’t buy unfinished stories. Readers don’t read either of these because unfinished projects never get published.

Finish it.

When I wrote my first fantasy novel, I hit a rough patch about 3/4 of the way through. For three solid weeks I thought every word I wrote was worthless. Every single day I had to bully myself through my word quota. Eventually I got through it and completed the manuscript. When I got to that “worthless” section later during the editing process, it wasn’t really all that bad.

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When I wrote Ship of Dreams, my boys were both quite young. I wasn’t getting much sleep. There were lots of doctor appointments. When John was around 4 or 5 years old, we discovered he’s autistic. That was heartbreaking on top of all of Michael’s difficulties. Once again I hit that stage at the 3/4 mark where I couldn’t stand the story and wanted to give up. I also had a disk crash that cost me a chunk of work. Even with all this going on, and with the help of my agent, I completed the manuscript. That book sold.

Whatever you’re writing, finish it. Only when you get all the way to what you think is the ending, will you have a better idea of where the story should start. This is why they’re called roughdrafts. Just do it. Get it written. Throw everything at the page until you reach the end. Take a break. Step back. Let it cool. Then begin the edit and the rewrite.

Checkered, Chequered, FINISH

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Filed under #atozchallenge, Blog challenges, doctors, Family, Fiction, historical fiction, Lillian Csernica, love, marriage, neurodiversity, parenting, pirates, publication, romance, special education, specialneeds, tall ships, Writing

A Brief Family Crisis


by Lillian Csernica on May 5, 2018

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My apologies for the sudden interruption of the Great Fortune Cookie Challenge.

On Wednesday my older son had a medical crisis that put him in the hospital. That’s where I’ve been, from Wednesday night until late last night. Michael has a very complicated medical history. It’s essential for me or my husband to be with him all the time so the inevitable questions that arise can be answered.

Michael can’t hold a normal conversation in terms of verbal give and take, so we must speak for him. I provide the nurses with a guide to interpreting Michael’s gestures and vocalizations, but it really does take someone who knows him well to understand and interpret his replies.

Michael had surgery. He’s on the mend. We hope to bring him home in a day or two.

Thank you for your patience. I will get the Challenge up and running again and the fun will proceed!

fortune-cookie-picture_csp16590076

 

 

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Filed under Blog challenges, doctors, Family, hospital, Lillian Csernica, mother, specialneeds, surgery, therapy, worry

To All of You, Many Thanks


by Lillian Csernica on Thursday, November 23, 2017

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Today is Thanksgiving Day here in the U.S.

Today is also my son John’s 19th birthday.

Today my oven is out of commission (and has been for about two weeks). We shall be dining at the Ideal Fish Company down by the Santa Cruz Wharf. It promises to be quite a feast.

Today I have written 1865 words of my new fantasy novel for #NaNoWriMo. I just finished, as a matter of fact. Now I can go eat dinner and party, having made today’s quota.

Today I am marinating in gratitude. It’s been a rough year. No matter what kind of day I’ve had, I can come online and find people on Twitter, on Facebook, at the games I play, and here on my blog. Kind people, funny people, sincere people, people with good hearts and sharp minds and dazzling powers of creativity.

Thank you to all of you who read this blog. Thank you for your supportive comments, for your reblogs, for all the ways you help me feel like I really am part of a community. All the hard work I struggle to accomplish really does mean something.

Thank you. God bless you. I wish you all the best.

thanksgiving

 

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Filed under autism, birthday, editing, Family, family tradition, fantasy, Fiction, Food, memoirs, mother, neurodiversity, parenting, specialneeds, Uncategorized, Writing

Getting the Details on Neurodiversity


by Lillian Csernica on October 8, 2015

Juliette Wade devoted one of her recent Dive Into Worldbuilding Hangouts to the subjects of neurotypical symptoms and those which are characteristic of the autistic spectrum.  She was kind enough to invite me to participate as a guest speaker because of my experience with raising John.

You can find the write-up at Juliette’s blog, TalkToYouniverse.

The blog post includes a video of me, so for those of you who don’t know what I look like “live and in person,” brace yourselves.  Just kidding.  I did dress up for the Hangout, as opposed to wearing my usual working clothes of my bathrobe over my sweats.  If anyone has any questions about the subjects discussed in the Hangout, I’m more than happy to answer questions and suggest resources.

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Filed under autism, fantasy, neurodiversity, parenting, research, science fiction, special education, specialneeds, Writing