Tag Archives: autism

A Special Needs Christmas Carol


by Lillian Csernica on December 15th, 2015

The holiday season has come round again.  It’s a stressful time for any family.  In a household where we already have all the demands of the special needs lifestyle, the additional claims on our time and sanity increase exponentially.

To show my support for all the caregivers who come under the heading of Family, I’ve rewritten The Twelve Days of Christmas to reflect the holiday season from our point of view.

The 12 Days of Christmas

as sung in an ASD household.

tantrum

On the first day of Christmas,

the spectrum gave to me

My child having a hissy.

medbottle

On the second day of Christmas,

the spectrum gave to me

Two late refills

and my child having a hissy.

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On the third day of Christmas

the spectrum gave to me

Three lost toys

Two late refills

and my child having a hissy.

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On the fourth day of Christmas

the spectrum gave to me

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

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On the fifth day of Christmas

the spectrum gave to me

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

mark_your_calendar

On the sixth day of Christmas

the spectrum gave to me

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

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On the seventh day of Christmas

the spectrum gave to me

Seven calls a-waiting

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

And my child having a hissy.

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On the eighth day of Christmas

the spectrum gave to me

Eight aides a-coughing

Seven calls a-waiting

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

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On the ninth day of Christmas

the spectrum gave to me

Nine classmates fussing

Eight aides a-coughing

Seven calls a-waiting

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

stock-photo-a-scaterring-of-yellow-goldfish-crackers-284355260

On the tenth day of Christmas

the spectrum gave to me

Ten goldfish crackers

Nine classmates fussing

Eight aides a-coughing

Seven calls a-waiting

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

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On the eleventh day of Christmas

the spectrum gave to me

Eleven wants repeated

Ten goldfish crackers

Nine classmates fussing

Eight aides a-coughing

Seven calls a-waiting

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

1100

On the twelfth day of Christmas

the spectrum gave to me

Twelve migraines drumming

Eleven wants repeated

Ten goldfish crackers

Nine classmates fussing

Eight aides a-coughing

Seven calls a-waiting

Six different meetings

Five bus breakdowns

Four IEPs

Three lost toys

Two late refills

and my child having a hissy.

merry-christmas-banner-clipart

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Filed under autism, Christmas, Depression, doctors, Family, family tradition, frustration, Goals, hospital, housework, Humor, love, marriage, mother, neurodiversity, parenting, special education, Special needs, therapy, worry, Writing

On Tour in My Own Back Yard


by Lillian Csernica on October 18, 2015

This weekend Santa Cruz County held its Open Studio Art tour.  The city of Santa Cruz is known as a haven for artists of all kinds.  What people often don’t realize is that up here in the mountains we’ve got a lot of artists as well.

John’s ceramics class had a serious project to complete.  Each student had to go to at least three of the studios on the tour and do what amounted to an interview.  The project worksheets included questions about what mood the artist was trying to create, comparing two different pieces by the same artist, and how the artists the student chose to visit could inspire that student’s own artwork.

John comes from a long line of artists on my mother’s side:

His great- great-grandmother ran a modeling agency back in the 1930s.

His great-grandmother wrote a society column for the newspaper, raised some amazing roses, and created artwork using textiles and ceramics and other media.

His great-grandfather was a professional photographer and filmmaker.

His grandmother sketches and paints, as well as creating multimedia artwork.

His mother (that’s me!) has worked as a professional bellydancer, and actor, and currently as a professional writer.

John is primarily a graphic artist, but he’s learning how to use computer graphics, clay, and other media.

I steered John toward three artists who live here in the San Lorenzo Valley.  John and Michael have lived their whole lives in this area.  It’s good for John to know he doesn’t have to go to a museum to see art.  What’s more, on the tour you’re allowed to see the artists’ studios where they create the pieces on display.

First Studio: Janet Silverglate.  Ms. Silverglate creates art by using found objects, many of which are what most of us would consider scrap materials or just plain junk.  Her style of art is called assemblage.  Each work of art is one of a kind.  John and I were both drawn to a circular artwork that included pieces from several different games such as Scrabble tiles, chess pieces, old Bingo cards, and even some Pick-Up Stix.  The overall look and feel put me in mind of the Kachina dolls I’ve seen in the southwest.

Second Studio: Larry and Pat Worley

Larry Worley takes basket weaving to a whole new level.  My favorite piece was a woven seashell the size of a small suitcase wound around a piece of redwood driftwood.  Simply stunning.

Pat Worley is a textile artist.  One side of her display featured long, rectangular silk scarves dyed in rich, vibrant colors such as fuschia and aquamarine.  The scarves all had leaf patterns running the length of the silk in either silver or gold.  The other side of the display showcased what I thought of as small quilts because of the many pieces of fabric arranged to form patterns or scenes.  The dominant color scheme was black, brown, and rust, with maple leaves as a frequent motif.  Ms. Worley explained the method she used to make the fabric for these as “reverse tie-dye.”  Starting with black cloth and using bleach, she would coax a variety of shades out of the material.  Impressive!

Third studio: Bob Hughes.  To say that Mr. Hughes makes wooden boxes is to say Monet liked to paint flowers.  My favorite box was shaped like the diacritical mark called a tilde, used to denote the palatal nasal sound of the “eñe” in words such as mañana. Mr. Hughes makes more than just boxes.  His vases and candle holders combine varieties of woods, or woods and metals.  Mr. Hughes was kind enough to explain to John, using a guide with step by step images, how he made a particular vase.  John is a visual learner, so this really helped him understand Mr. Hughes’ artistic process.

The artists were all happy to know I wanted John to get a wider understanding of how many ways people create art, and what’s inside them that wants to be expressed.  Getting a good grade on the project is important, but more than that, John has so much potential just waiting to come out through his drawing skills.

Take a look at your local community arts news items.  You’d be amazed what’s waiting for you in your own back yard!

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Filed under art show, artists, autism, creativity, Family, family tradition, home town, homework, Writing

Drink from a Different Well


by Lillian Csernica on October 14, 2015

I’ve been working hard lately on two short stories that will appear in 30 Days Later, the follow-up anthology to 12 Hours Later.  The stories are set in the same milieu, Kyoto 1880.  My main characters, Dr. William Harrington, his wife Constance, his daughter Madelaine, and Nurse Danforth, are all upstanding subjects of Queen Victoria adjusting to life in a foreign country.  Two factors make this adjustment even more challenging.  One, Madelaine has taken an interest in clockwork and other machinery.  Two, the Harrington household keeps attracting the attention of various Japanese supernatural beings.

Does it sound like a strange mix?  It is, and that means research.  Lots and lots of research.  One minute I’m reading up on Victorian fashions, and the next I’m learning exactly why two pulleys are better than one.  I have to stop thinking of Madelaine’s bedroom as being “upstairs.”  Victorian mansions had two floors, sometimes more.  Japanese houses are typically one floor.  I have to load my brain with the correct information.  Facts + imagination are the warp and weft of historical writing.

Unfortunately, a frequent side effect of writing that requires a lot of research under the pressure of a looming deadline is mental fatigue.

I have just discovered a new way to cure mental fatigue that brings with it an additional bonus.

Before the boys came along, I cooked all the time.  I invented my own variations on the recipes in my cookbooks.  Now, Michael is on a liquid diet.  John has the ASD trait of being very finicky about what he will and won’t eat.  Chris works swing shift.  Thanks to insomnia, the boys, and my writing, I never know what my schedule will be like.  Bottom line, cooking and I have become strangers.  I love to eat, but I’m more gourmand than gourmet.

The mental fatigue hit me hard a few days ago. Out of curiosity I started watching “Food Network Star,” the reality TV show where three established Food Network experts mentor fourteen hopefuls through the competition to acquire what it takes to be the new Food Network Star.  Every week some of the hopefuls are eliminated until it comes down to the final three.

I like game shows.  I like cheering on my favorite players.  I like the way reality TV works (most of the time).  So watching this show is fun, entertaining, and relaxing.  It does not require the attention, the focus, and the retention of information that research demands of me, to say nothing of the hard work of actual writing.  Fresh input.  Stimulating another area of the brain.  Taking the pressure off.  All of that is important.

Now here’s the bonus: the process of becoming a Food Network Star is all about finding what is unique about you and what you bring to the entertainment marketplace.  The particular slant here is food and cooking, but we all know that today branding is the name of the game.

One of the biggest challenges for the competitors is learning how to describe a meal in thirty seconds.  Words.  It’s all about vocabulary.  Another challenge is to show the real you, your personal flair.  A big priority is to make a connection with the audience.  On TV that’s done through the camera.  For writers, it’s done on paper, but that connection is still essential.  Hook your reader.  Establish sympathy for your main character.  Make your customer CARE!

See what I’m saying?  There I was, watching this elaborate game show about cooks hoping to become media stars.  Suddenly I realized I was hearing advice and learning skills that could do me a lot of good as a professional writer.

When you hit the wall of mental fatigue, when you can’t stand another moment of what you’re doing but you have to keep on keeping on, go drink from a different well.  Go listen to NPR.  Go watch an expert talk about resurfacing a road, childproofing a house, or bathing an elephant.  Who knows what gems of information or inspiration you might discover?

How do you deal with it when you’re tired of writing?  How do you keep going when the clock is ticking and there’s no time to waste?

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Filed under creativity, editing, fantasy, Fiction, historical fiction, Japan, research

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

World Autism Day


by Lillian Csernica on April 2, 2014

 

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Hello.  My name is Lillian, and I am the mother of an autistic child.

Went to see my therapist this morning.  Told her how tired I was of living this life.  This week is Spring Break, and so far every single day has been totally FUBAR.  (For those of you who don’t know what the acronym means, please take a moment to Google it.  Thank you.  I’ll wait.)

Monday — No aide for John.  Car trouble.

Tuesday — No aide for John.  Different aide.  Health issues.

Wednesday (today) — No nurse for Michael!  That was a nasty surprise that took four phone calls to sort out.  My husband had to watch Michael (Chris normally sleeps late due to his work shift) while I kept my therapy appointment.  My mother was driving, so I took John with me.  No aide for John today.  When I got home, I had three hours of Just Me & The Boys.  I’m not used to that.  Then the afternoon nurse showed up.

Thursday — The nurses are all sorted out.  Will John have an aide?  That remains to be seen.  Same for Friday.

Is it any wonder I can’t stand living in a constant state of crisis, of my support staff flaking out on me, of John being disappointed and his routine disrupted, of Michael not getting his medication on time and having a seizure?  I haven’t been sleeping more than about four hours a night lately because I ran out of one of my insomnia meds and getting the refill was the usual complicated mess.  There’s nothing like sleep deprivation to make even the smaller glitches seem like a few more anti-personnel mines thrown into my path as I struggle through the day.

Autism.  It’s taught me a whole new vocabulary, words like “neurotypical,” “noncompliant,” and “perseveration.”  I’ve learned about the Praise-Prompt-Withdraw method, the Prop-Rule-Role method, and the importance of preventing the anxiety spiral from gaining momentum.  You have to catch that when it starts or you’re in for what a boss I once worked for called, “weeping and wailing and gnashing of teeth.”  Yes, it’s a Biblical reference, and well it might be.  The Seven Plagues of Egypt have nothing on John when he’s well and truly in the grip of a full bore meltdown.

Autism has also taught me tolerance.  The ability to see people as individuals, each possessed of their own unique strengths and weaknesses.  The importance of not making assumptions, of not being judgmental, and of lending a helping hand at any and every opportunity.  I am no saint.  I have a bad temper made worse by depression and lack of sleep.  I get very frustrated when all the staffing crises and school problems and medical issues drag me away from my writing.  I can’t wait to run away to the next convention where I can leave this life for a few days and wallow in the companionship of my fellow writers, readers, and dreamers.

Part of me feels really guilty over not feeling guilty about that.

Autism is a spectrum disorder.  You know what?  BEING HUMAN IS A SPECTRUM DISORDER!

I don’t have any profound wisdom about this.  I have no eloquent, compassionate statement to make.  My one son is crippled for life physically, and my other son may well be suffering learning disabilities more serious than I had previously realized.  Life is tough for us.  The bottom line remains the same.  I love my sons with all my heart.  I will live this life seeing to it they both enjoy the greatest quality of life they can possibly achieve.

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Filed under autism, Depression, Family, fantasy, Fiction, Goals, marriage, Self-image, Special needs, Writing

Sometimes Things Go Right


by Lillian Csernica on March 28, 2014

John is now a much happier boy.

On Monday he came home from school all happy about his new math work, which is a computer game called “Manga High” that teaches math skills.  He’d earned a reward ticket which entitled him to “a preferred activity” here at home.

 

On Tuesday he came home proud to tell me he had “been respectful and followed directions.”  That means he listened and learned his new schedule without getting upset about it, winning him another reward ticket.

On Wednesday he came home all happy about being able to spin a basketball on his fingertip  AND being able to make a basket by throwing the ball backward over his head.  We got out his basketball and he gave us all a demonstration of the spinning.

Today he came home with a reward ticket that had a note from his teacher.  “John raised his hand and answered questions.”  That means he participated in class discussions!  This is HUGE!  I was so proud of him, so happy, that I sent him out with his aide to go buy himself a treat.  He chose a Tollhouse Cookie ice cream sandwich, which goes to show John has good taste.

My poor, frustrated, angry boy is happy again.  He likes school.  He comes home all excited over his latest accomplishment.  He’s going in the direction we wanted him to go.  He’s already picking up the skills he’s been having such trouble learning.

Thank you, God.  Thank you to all of John’s teachers, his caseworker, his school staff and his aide.  Thanks to my husband and my sister who were there alongside me for John when he needed us.

Thank you, John.  Thank you for being a strong, brave, marvelous boy, willing to keep trying no matter how hard some tasks can be.

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Filed under autism, Awards, Family, Goals, love, Self-image, Special needs, Writing

Autism + Adolescence


by Lillian Csernica on April 21, 2013

I love my son John so much.  He’s come so far from the days when we had to have a behavioral specialist and a one to one aide come to our home and “play” kindergarten with him until he got the hang of his first icon-based schedule.  He’s become popular at his middle school for his participation in dress-up days.  On one Superhero Day, he was the only person in the entire school who dressed up!  He went as “John-zuka,” with a costume he and my sister had put together.  (She sews, I don’t.)  Thanks to him, his grade won five spirit points.  John was the Man of the Hour, much like Harry Potter winning points for Gryffindor.

Now John is fourteen.  Oh Lord, is he fourteen.  

Because of John’s anxiety issues, he bites his fingernails.  We got him to stop doing that by convincing him if he kept biting his nails he couldn’t paint his nails black this Halloween as part of his planned Frankenstein costume.  So now he’s chewing on his cuticles to the point of drawing blood.  It took three of us to get the Band-Aids on his fingers last night.  Two to hold his arms and one to actually apply the Band-Aids.  The boy is six feet tall, built like a wrestler, strong as an ox, and very very stubborn.  He almost lifted me off my feet, and I’m no petite little china doll.

Remember when you were a teenager?  Not a child, but not an adult?  Caught between all the things you had to leave behind, confused about everything that was coming at you?  And then there’s the whole issue of hormones and a new awareness of the opposite sex and learning all the social rules that go along with being just classmates or friends or boy/girl-friends or what we used to call “going steady.”  So  much to learn, so many opportunities for confusion, for mixed signals, for embarrassment and humiliation.

Now add to all that the symptoms and processing disorders of autism.

This fall John will enter high school.  It’s a whole new stage of life.  He already has a lot going for him, and he will have a good team of teachers, therapists, and caseworkers to back him up.  There will be the hard days, the days when frustration and anxiety get the best of him.  There will be days when I’m so exasperated I think my head will explode.

I love John.  On the hard days, I’ll try to make sure I give him extra hugs or praise or whatever it takes.

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Filed under Family, Special needs

A Share of the Loot


by Lillian Csernica on March 17, 2013

Special occasions at my house are unusual, to say the least.  Most holidays involve a family dinner of some sort.  This is problematical.  Michael can’t eat by mouth.  He has a G tube and a Mic-Key button, which means he eats through a tube that goes into his stomach.  He’s on a liquid diet of KetoCal, which keeps him in a state of ketosis.  It’s our hope that this will prove effective with seizure control.  It did for a while at first, but Michael’s medical complications make complete control of his seizure disorder unlikely.  If you’re new to the world of seizure disorder and the possible treatments, I highly recommend the book Michael’s neurologist had me read:

http://www.amazon.com/Seizures-Epilepsy-Childhood-Hopkins-Health/dp/0801870518

Then there’s John.  Like many boys and girls on the spectrum, John has very specific preferences regarding what he will and will not eat.  I’m pretty sure it’s a matter of texture.  He likes what he likes, but thanks to persistent effort and the family stubborn streak, my sister has helped us get John to eat a more balanced diet.  He’s allergic to peanuts, but the school is so careful that hasn’t been a problem yet.  He would live on McDonald’s Chicken McNuggets and all the fries he could get his hands on, but we manage to keep that down to about once a week.  Since I’m mentioning helpful reference books, let me recommend one that did a lot for my understanding of how John experiences the world:

http://www.amazon.com/The-Out—Sync-Child-Recognizing/dp/0399531653/ref=sr_1_1?ie=UTF8&qid=1363663417&sr=8-1&keywords=the+out-of-sync+child

Now as you can see, both of my boys have a peculiar relationship with food.  On holidays Michael looks forward to a taste of gravy or stuffing, perhaps a lick of whipped cream or frosting, and in particular something spicy.  Holiday foods are typically special, once a year foods, so that means John doesn’t recognize them and wants nothing to do with them.  Recently we’ve been able to coax him into eating turkey at Thanksgiving and the pork roast at Christmas.  He loves potatoes in almost any form, and he’s pretty tolerant of vegetables in general.

Now we come to the heart of the matter.  For Christmas, it’s stocking stuffers.  Now that Easter is approaching, it’s the goodies we put into the Easter baskets.  What do you give to special needs children who have food sensitivities, restricted diets, sensory processing disorders, allergies, fine and gross motor issues, and Heaven knows what other difficulties?  Answer: You do your absolute best to get out there and find whatever they can have!  It’s easy enough for me to buy candy and little toys and gifts for John.  He can use both hands, he loves chocolate, and right now he’s big on superheroes.  What about Michael?  Again and again the family will ask me what Michael likes, what he wants, or, more and more often, they’ll send gift cards for Toys R Us or Amazon.com.  That’s fine.  For Christmas this past year, Michael communicated his wish to go bowling, go to the movies, and take a trip to the Monterey Bay Aquarium again.  We’ve gone bowling, and now we’re waiting for the kind of movie that won’t be too overstimulating in the theater environment.

The real trick is finding the little things, the jelly beans and chocolate rabbits and a fluffy duck like one of those long-armed monkeys, the light-up squishy chick and the shiny green Easter grass that will end up all over the place.  Yes, I do my best to find things Michael can play with, things he’ll enjoy.  The most important point is to include some of those items he can’t eat, he can’t really do much with, just because those items are traditional and they are part of the goodies that all the normal kids get.

No matter what his disabilities might be, Michael deserves his share of the loot.  The surprise, the delight, the laughter, the shredding of giftwrap and the taste of the chocolate and the family fun of the board games he loves to play.  If Michael can’t get out there and experience the world, then I will do everything I can to bring the world to Michael, especially when it comes to special occasions.

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Filed under Family, Humor, Special needs

The Mother of Invention


by Lillian Csernica on March 12. 2013

It’s high time I dragged myself into the 21st Century by joining the blogosphere.  I’m a writer.  Fantasy, dark fantasy, historical romance, horror, nonfiction.  I have one novel out, SHIP OF DREAMS, under my romance pen name of Elaine LeClaire.  You can find my short fiction at Tales of Old, Tales to Terrify, and soon in Midnight Movie Creature Feature Vol. 2.  I’m very fortunate to have a career that lets me work at home because my two sons are both what’s now referred to as “special needs” children.

They’re not so much children anymore.  Michael is sixteen.  He had to be delivered at only twenty-three weeks, making him a micro-preemie.  A pulmonary hemorrhage and a grade four plus brain bleed left him with cerebral palsy and later seizure disorder.  He is medically fragile, an invalid who is either in his wheelchair or his hospital bed.  He doesn’t let any of that stop him.  He’s an award-winning artist, a great bowler, and he loves classic rock.  Michael has a great smile and a wicked sense of humor.

John is fourteen.  He went full term, but he did refuse to breathe.  His brief bout of hypoxia is what we believe caused his speech delay.  Speech therapy led to an evaluation by a neurologist which resulted in a diagnosis of autism.  John is low on the spectrum, with a talent for drawing that began when he started watching “Blue’s Clues” at age two.  He has taught “Drawing with John” classes at his elementary school both in the classroom and over the school’s closed-circuit television broadcasts.  John loves digital animation and studies the Special Features options on DVDs which give him a behind-the-scenes view of how the artists and programmers work their magic.

It’s not easy finding time to write when each day I have phone calls to make, medical supplies to order, school projects to supervise, doctor appointments, prescription refills to keep track of, and the other random demands that crop up all the time.  I tend to stay close to home for the boys’ sakes, so writing lets me run away from home inside my own head.  I look forward to sharing the ups and downs of this life with you.

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Filed under fantasy, Fiction, Special needs, Writing