Category Archives: special education

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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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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#blogchallenge: Fortune Cookie #17


by Lillian Csernica on May 17th, 2018

 

Today’s fortune says:

You don’t get harmony when everybody sings the same note.

dis·cord
ˈdiskôrd/
noun
noun: discord
  1. 1.
    disagreement between people.
    “a prosperous family who showed no signs of discord

    • lack of agreement or harmony between things.
      “the discord between indigenous and Western cultures”
  2. 2.
    Music
    lack of harmony between notes sounding together.
    “the music faded in discord”
    synonyms: dissonance, discordance, disharmony, cacophony

    “the music faded in discord”
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Here we have a bunch of people singing the same note in terms of the political ideology they espouse.  Is this harmonious? No. It is not.

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We need all the notes, all the chords, all the melodies to come together in the great orchestral voice of life. May a joyful noise until the Lord! Sing out with all your heart! Go tell it on the mountain! Punk rock, bagpipes, ocarinas and kazoos. Let’s do it!

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How to Stand Up and Be Counted


by Lillian Csernica on January 8, 2018

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It’s time to shout with one great voice. It’s time to take to the streets and look each other in the eye. It’s time to exercise several of the constitutional rights we still have before the Powers that Be try to strip them from us.

On Saturday, January 20th at noon in Santa Cruz, CA, women and their allies will assemble at the corner of Pacific Avenue and Water Street. We will march from there to the Louden Nelson Community Center on Center St.

Similar marches will be taking place at the same time in other cities in California. We are the West Coast, the Left Coast, living on the edge of the San Andreas Fault Line. We are black, white, Asian, First Nations, multi-ethnic, cis, binary, non-binary, trans, LGBTQ, neurotypical and neurodiverse. We are the whole rainbow.

Join us. Add your colors to the rainbow.

We celebrate the anniversary of resistance, of every woman of whom it can be said:

“And yet, she persisted.”

Damn right we do.

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NaNoWriMo 2017: Fantasy for Fun & Profit


by Lillian Csernica on October 20, 2017

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That’s right. I’ve gone and done it. I have officially signed up for NaNoWriMo 2017.

I’m in the editing stage of The Flower Maiden Saga, so this year I’m going back to basics and writing a good old-fashioned sword & sorcery novel. When I first started to read fantasy, I gravitated to C.L. Moore’s Jirel of Joiry, Fritz Lieber’s Fafhrd and the Grey Mouser, and of course Conan the Barbarian. Red Nails remains one of the most chilling and thrilling stories of its kind.

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Now the tricky part will be getting my daily 1667 words written while I’m doing all of this November stuff as well:

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A road trip up to EuCon in Eugene, Oregon. John will be teaching drawing classes in the Art Bus, which is sponsored by Imagination International Incorporated, the folks who make Copic markers.

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Making Thanksgiving happen.

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Celebrating John’s birthday.

And the usual daily chaos that keeps me on my toes.

All this and write 50,000 words? 200 pages? No problem!

Stay tuned, folks. Let’s see if I can make it to the end of November before my head explodes!

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How to Keep Halloween Safe and Happy


by Lillian Csernica on October 3, 2017

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Holidays at my house are always a bit out of the ordinary. We don’t do ordinary, or normal, or any of those just-like-everybody-else words.

My boys are too old to trick-or-treat these days, but they do love dressing up in costume, and they will never say no to treats.

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My older son does not eat by mouth. He has a g-tube which feeds a liquid diet directly into his stomach. He loves toys, games, arts and crafts, so non-food treats are fine with him.

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My younger son is allergic to peanuts. They are EVERYWHERE, especially when it comes to candy. There are a lot of safe candy options, as well as healthy alternatives and non-food items.

For the past four years I have been careful to have two bowls for trick-or-treaters. One has a mix of chocolate and non-chocolate candy. The other has a variety of non-food treats such as Halloween-themed bubbles, stickers, baby Slinkies, and glow sticks. I also keep a supply of prizes I give out to individuals and/or families who have created costumes that I think are really special.

Two years ago, I discovered the Teal Pumpkin Project.

Families like mine all over the country (and quite possibly the world) face the dilemma of wanting their children to participate in Halloween and enjoy all the fun the other kids are having. When you put a teal pumpkin on the porch, you send a very bright and welcome signal. You tell families like mine that you get it. You are aware of food allergies and related health problems and you are prepared. Come one, come all! You have goodies to suit everybody’s wants and needs.

This Halloween I look forward to putting my teal pumpkin in a prominent place on my porch so everybody will know when they yell “Trick or Treat!” at my house, they won’t go away empty-handed. On the contrary. We usually have so much that by the end of the night I encourage the older trick or treaters to take a handful.

Please support the Teal Pumpkin Project. Let’s make this a safe, happy Halloween for everyone!

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5 Things You May Not Know About Having Multiple Children with Special Needs


I have just discovered Jenn and her amazing family. As a mother with more than one child who has special needs, I know how complicated it can be to just get through the day. To me, Jenn is a superhero. Read on and you’ll see why.

Special Needs Essentials Blog

We’re happy to introduce a new gust blogger to the Special Needs Essentials community,  Jenn from Positive Parenting Specialized. We are glad to have her unique perspective on our blog!

Hi there, I’m Jenn, a single mom to a seventeen year old with Global Depression, a fifteen year old with Asperger’s Syndrome (and a hand full of co-morbid diagnosis), a 10 year old with autism, Type 1 Diabetes, and Generalized Anxiety Disorder, and a 7 year old fireball with Disruptive Behavior Disorder, Sensory Processing Disorder, Learning Challenges, and Anxiety Disorder. I am in my forties and have started blogging to try to support the kids and myself. I love being a work from home mom, praying often that it stays this way.

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Life with four children who all have unique challenges might be surprising. Maybe some of these points are “No Brainers.” See for yourself!

Here are Five Things…

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Supreme Court Supports Special Needs Education


by Lillian Csernica on March 22, 2017

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Today the Supreme Court ruled to improve educational benefits for special needs students!

This is wonderful news. With Trump in office, I’ve been very worried about what programs will remain in place to support my sons as they “age out” of the county educational system. This sets a precedent that will prompt positive decision-making!

Get the details here!

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Breaking up with Ben & Jerry


by Lillian Csernica on January 18, 2017

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Tonight I consumed my last pint of Ben & Jerry’s Karamel Sutra.

Tomorrow morning I begin a medically supervised accelerated weight loss program.

When I was ten years old, my parents took me to see a dietician. I was already 5’6″, and already 152 lbs. Not good. Now I’m forty years older and 100 lbs heavier. Time to stop kidding myself about the health problems that are right around the corner if I don’t do something about my weight problem RIGHT NOW.

This is not a New Year’s Resolution. This is me deciding to act like a grown-up and stop indulging myself while blaming the depression, the difficulty of my life, some writing setback, or whatever other chaos afflicts me at that moment.

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I have a plan. I have professionals backing me. I have a guidebook and a journal and a food scale and the necessary supplements. I’m going to do this.

There are so many stories waiting to be written.

There are so many birthdays and Christmases and personal triumphs ahead for both Michael and John.

There are so many places in the world I have yet to see, just in Japan alone!

There may be setbacks. That’s OK. I know how to deal with setbacks. You just take a deep breath, focus on the next indicated action, and start moving forward again.

I can do this. I will do this. For me, for the kids, for my writing.

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