Category Archives: Special needs

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

Universal Fun!


by Lillian Csernica on June 24, 2017

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Tomorrow John and I will fly down to Los Angeles and spend a few days enjoying the wonders of Universal Studios Hollywood.

John has been talking about seeing Universal Studios ever since he first heard about it many years ago. Chris and I decided that a trip to this previously unexplored land of movie magic makes the perfect graduation gift for our boy.

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John and I have studied the map. We’ve discussed what we each want to see the most. Today we’ve been packing our bags. Tomorrow we take our first plane trip together. I’m pretty sure what John is looking forward to the most is The Wizarding World of Harry Potter.

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Me, I’m looking forward to the air conditioning on the plane, at the hotel, and on many of the rides. I’m not a big fan of heat, preferring autumn and winter to summer. I suppose this is an indicator of my advancing years. Insane roller coasters are great, but they lost their appeal for me after I reached my late twenties.

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Even so, I can’t wait to watch the Special Effects Show with John, to get silly in the Despicable Me Minion Mayhem area, and probably scream at least once on the Jurassic Park ride. Best of all, I finally get to drink butter beer and hang out at Ollivander’s where Harry Potter’s wand chose him!

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My grandfather worked in the movies. My mother has appeared as an extra in several. I did some writing for the movies, once upon a time. And now my son loves movies just as much as the previous generations in our family have.

Watch for my trip report once we’re home again!

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Filed under autism, bad movies, classics, cosplay, creativity, dreams, fairy tales, Family, family tradition, fantasy, Fiction, Food, history, legend, Lillian Csernica, memoirs, mother, neurodiversity, parenting, science fiction, Special needs, steampunk, sword and sorcery, travel, Uncategorized, Writing

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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Day 14: How’s the Weight Loss Program Working?


by Lillian Csernica on February 2, 2017

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Answer: Fourteen pounds in fourteen days. Yes, that’s right. I’ve lost on average one pound every day since I began the program.

This is not a testimonial or an infomercial. This is a celebration of overcoming a problem I’ve had since I was ten years old.

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I like eating vegetables. I like cooking. I can’t remember how I got into the rut of relying mostly on fast food or microwave dinners. When the kids were little I had to eat fast when I had a free moment, sure. The boys are legal adults now. It’s high time I abandoned the old instant gratification pattern for long term health and well-being.

All this without a specific exercise program. I’m still wearing the knee brace. There’s a communication problem between my doctor and the physical therapy people. I am in the middle, trying to get that sorted out. Until I know what I can and can’t do while my knee recuperates, I have to be careful.

Meanwhile, let me just say that I love Quest protein bars. So many flavors to choose from!

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The 12 Rules of Christmas


by Lillian Csernica on December 15, 2016

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1) Thou shalt slow down. We’re all in a hurry. It’s that time of year. If we can “proceed in a calm, orderly fashion” the way we’re directed to do during emergencies, then maybe we can avoid the kind of emergency that will ruin everybody’s day. Yes, I mean traffic. I also mean elevators, escalators, check out lines, and any other point where the crowd tends to hit a bottle neck.

2)Thou shalt hurry up. This means have your ticket ready when you exit the parking garage. This means get off your cell phone and stop blocking the aisle. This means know what you want to order by the time you get to the head of the fast food line.

3)Thou shalt have mercy on servers, salespeople, and other customer service representatives unless and until they demonstrate deliberate rudeness. Once that happens, demand to see the supervisor or manager. Take the time to make sure those rude people get busted for their bad behavior. You deserve polite service.

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4)Thou shalt give no gifts that require labor or maintenance unless by prior explicit agreement. This means any living creature in the pet category, any plant growing in a container, anything from any DIY category on Pinterest, and especially any of those “In A Jar” projects.

5) Thou shalt not covet thy neighbor’s parking space. This goes double for the handicapped slots. Just because you can’t see why a person has a handicapped placard or special license plate, that doesn’t mean he or she doesn’t have a disability that qualifies.

6) Thou shalt contain thy children. This includes both physical movement and volume control.

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7)Thou shalt prepare, taste, and evaluate any new recipes before inflicting them on innocent and unsuspecting family and/or guests. Have you ever wondered why the women’s magazines bring out all those bizarre recipes for the holiday season? If those food items are so delightful, why aren’t people making them anymore?

8) Thou shalt keep thy receipts. Big stores like Toys R Us and Macy’s are pretty good about “gift receipts,” making returns possible without the person knowing exactly how much you spent on the gift.

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9) Thou shalt not put up so many Christmas lights, inflatable snowmen, animatronic reindeer, etc. etc. that you create a traffic hazard by either distracting drivers, blinding them, or both.

10)Thou shalt cover thy nose or mouth in the event of a sneeze or cough. Come on, people. Do the elbow thing. Do NOT use your hands, because you will then spread whatever germs didn’t already escape into the air.

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11)Thou shalt send actual written thank you notes. I know, this must sound unbearably old-fashioned in the Digital Age, but it’s the right thing to do. My sons send written thank you notes, and everybody knows Michael and John both need some help to do that. People are surprised and very pleased. Word gets all the way back to my mother, who sat me down and made me write thank you notes as soon as I had learned how to write.

12)Thou shalt give thyself permission to stop trying to make everybody happy all at once, especially when that means losing sight of making thyself happy too. Figure out what really makes you happy, be it baking cookies or driving around looking at Christmas lights or going to church or playing silly board games with your friends. Do those things. Give yourself the gift of “Peace on earth, goodwill toward Man.”

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Can It Get Any Sillier Than This?


By Lillian Csernica on August 26, 2016

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Have you ever had one of those days where the raw, undiluted silliness of people was simply beyond belief?

For me, today was that day.

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Finding two hard-boiled eggs.

I had an early doctor appointment this morning, so early I was out of the house and in my car by 7:15 a.m. I stopped at the grocery store for an iced coffee. In the deli I can usually find ready-to-eat hard-boiled eggs. Not today.

At that hour I was one of maybe three customers in the entire store.  I asked one of the folks behind the deli counter if they had any more hard-boiled eggs. She came out and looked around in the deli cases, finding none.

Then another clerk hailed me. She wore the tool belt that had sheaths for her box cutters.  That meant she worked on the loading dock in the back opening deliveries.  (I have no idea what she was doing hanging out by the deli counter.)  She told me there was one other place to look for the eggs. This was way across the store. She led me over there, found nothing, and expressed her deep regret.

All I can figure is I was a customer and these people were going to make sure their manager saw them providing good customer service. Two hard-boiled eggs were not that big a deal to me. Seeing these clerks turn my breakfast into The Quest for The Eggs was really funny.

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Sittin’ at the car wash

In my front yard we have an oak tree so big and so old several of its limbs are supported by a network of thin cables. The oak tree drips what I assume is sap, leaving sticky trails down the windshields and sides of our vehicles. Living out in nature means a fine dusting of pollen all over everything. Then there are the power lines, which provide wonderful perches for the blue jays, sparrows, robins, and crows. You see where I’m going with this, don’t you? The Bird Brigade sits on the power lines and poops all over our vehicles.

I picked up John after school today and ran some errands, which included going to the car wash. You pay your money, get a receipt with a code on it, then drive around to the entrance of the car wash. The average wash takes about ten minutes start to finish. There were four cars ahead of us. Matters were moving along at the usual rate when the next car into the wash unit suddenly backed up. I watched this person pull forward and back up three separate times. What madness was this?

Then I understood. This person had never been through this car wash before. What he or she thought was an alarm was merely the signal to stop the car so the wash could begin.

At this point there were two other cars ahead of me and three more behind me. Why were we all just sitting there watching this poor fool pulling forward and back, risking damage to the car and the wash unit, to say nothing of the next car in line?

I sent John to tell the attendant at the cash register what was going on.

That got sorted out with no injuries to people or machinery, thank God. John and I took our turn. My car now looks all shiny and pretty.  I bought John an ice cream sundae as a reward for his patience.  The poor guy had been stuck in the car over an hour thanks to a bunch of adults who couldn’t get out of their own way!

 

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Back By Popular Demand!


by Lillian Csernica on August 2, 2016

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School is still out. Summer school is over. That means Michael is home all day every day with the exception of adventures such as the San Francisco Zoo and his latest specialist checkup at Stanford. When we have enough staff, we have two eight hour nursing shifts, resulting in coverage from 6:30 a.m. to 10:30 p.m.

We do not have enough staff.

This week I get to cover the a.m. shift. 6:30 a.m. to 2:30 p.m. Eight hours of keeping a vigilant eye on Michael, changing diapers, giving medications, and in general keeping him entertained.

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At this time a year ago Michael was in the Oakland Children’s Hospital in serious danger of death from organ failure. All things considered, I should be overjoyed to have him home where the worst thing he’s suffering is boredom.

Taking the a.m. shifts with Michael is reminding me all too strongly of the terrors of watching over him in the hospital. It’s a strain both physically and emotionally. I love my boy and I will do right by him.

I must also be careful to do right by me.

This involves pushing onward with my efforts to edit Sword Master, Flower Maiden. Given that most mornings I don’t have two brain cells to rub together, this work demands rather more of an effort than usual.

I shall prevail! All prayers, good thoughts, and best wishes are most welcome!

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Filed under Depression, doctors, editing, Family, fantasy, Fiction, frustration, historical fiction, hospital, Lillian Csernica, mother, parenting, perspective, PICU, Special needs, worry, Writing

In Need of Nurses


by Lillian Csernica on June 18, 2016

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I’ve been meaning to write more frequent blog posts.  Life has gotten in the way in the form of being seriously short staffed where Michael is concerned.  Right now I have two R.N.s and my sister, who does have experience with hospital and in-home care.  With Michael out of school, we’re running two eight hour shifts per day.  This means I have to pitch in as well.  I’ve had to take four of the eight hour shifts, three 6:30 a.m to 2:30 p.m. and one 2:30 p.m. to 10:30 p.m.

Michael takes seven different medications.  He needs at least two breathing treatments per day which include nebulizer treatment followed by three timed sessions with a percussive therapy vest.  Diaper changes can be quite laborious depending on the nature and quantity of his output.  Michael is twenty years old, close to six feet tall, and weighs 145 lb.  He’s on the gangly side, so rolling him from one side to the other requires considerable effort.

In the morning I fully expect to need Naproxen, if not my carefully hoarded stash of Vicodin.  I’m hoping the Vicodin won’t be necessary because I have an hour’s drive ahead of me in order to attend a writer’s group meeting.

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Adding to my joy this week is a breakdown in communications with the supplier of my antidepressant medications.  I did get an interim prescription for one of them from my doctor, but there’s been more difficulties with the other prescription.  Tomorrow will be Day 3 without Pristiq.  I will either be what some people might consider manic, or I will have no patience with obstacles and no filters in place to moderate my reactions to such obstacles.

Not really the best frame of mind for giving critiques in a writer’s group setting.

On Sunday we interview yet another R.N.  I’m really hoping she turns out to be a keeper.  We’re stretched mighty thin.  Summer school starts next week, but we still need a third R.N. to take some of the load off of my sister.

All of this leads me to think about what we’ll be facing once Michael is no longer in school.  He has two years left in the County program.  Then we’ll have to find other ways to get him out of the house and keep him occupied so he doesn’t languish in bed for the majority of his day.  That’s not good for his mental or physical health.

Doesn’t do a whole lot for mine, either.

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Filed under Baclofen pump, Depression, doctors, Family, frustration, Goals, hospital, Lillian Csernica, mother, parenting, perspective, Special needs, specialists, therapy, Writing

How We Survived a Three Convention Weekend


by Lillian Csernica on June 4, 2016

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Hi, gang. I made it through all four days of Clockwork Alchemy, BayCon, and Fanime.I would have written this post sooner, but the sudden discovery of John being WAY behind on preparing his Final presentation/exam in one of his classes caused me to devote what energies I had to making sure he met today’s deadline. I love that boy dearly, but some days he makes me crazy.

The weekend was packed with memorable moments.  This was John’s first time really participating in conventions.  (He did make a brief appearance at the Meet the Guest Reception of one BayCon about ten or twelve years ago. We had to keep him away from the buffet and out from under everybody else’s tables.) It was a spectacular weekend!  John even won a Hall Costume Award for his steampunk attire.

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Technolo-John meets Mega Man!

John had quite a few adventures, including playing the communications officer aboard the Starship Artemis. He made a light saber in one of the DIY workshops, and he discovered the joys of hanging out in the Hospitality Suite having munchies and watching “Wheel of Fortune” on a big plasma screen.  That might sound silly, but I was pleased to see John guessing the solutions with everybody else.

At Fanime, all the people in costume blew John’s mind. He’d been hoping to meet some of his favorite superheroes. Sure enough, one man was dressed as Nightwing, and one young lady wore a Raven costume. Raven told John how much she liked his steampunk outfit. That had him walking on air!

Business was good. I sold all but one of the anthology copies I brought with me.  Gave away all the beaded space-theme bookmarks and the Japanese art print bookmarks, all of which had this here blog’s URL on the back.  Shameless Self-Promotion! John got to see people asking me for my autograph as I signed their copies.  This is my idea of Take Your Kid To Work Day. Now John knows that I really am (kinda) famous.

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Courtesy of Leigh Flynn

At Clockwork Alchemy on Sunday morning I had a good time teaching the Victorian Yarn Doll DIY.  Yarn colors included forest green, wine red, and navy blue, as well as what I like to call the “steampunk rainbow.” This is a yarn made up of several jewel tone colors suitable for the steampunk era. Traditional Victorian yarn dolls are either boys or girls.  Out of respect for the gender fluid community, I wanted to provide materials that were both inclusive and diverse. If you’re interested in making yarn dolls, Pinterest is a gold mine of methods, styles, and materials.

Mixy Award

This is the Mixy Award, created by Steve Mix in honor of those people who he feels deserve recognition for their ongoing contributions to fandom and the convention community.  At this year’s BayCon, Steve granted me the honor of presenting the Mixy to none other than my best friend and co-conspirator, Pat MacEwen.  Convincing her to bring the spiffy clothes and dress up on Saturday night was a bit of a challenge, because of course I couldn’t tell her why.

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Steve Mix was also responsible for the D20 challenge.  Several of us who are gamers past or present brought our best D20s to the con.  Whenever some of us would cross paths, we’d roll against each other. Best of five was the general rule.  Whoever won got to keep all the dice involved in that particular round.  I brought five D20s with me, and I left with five D20s, so I broke even.

In the bar of the San Mateo Marriott, the tables are glass.  That meant that in the evening when we had anywhere from three to seven people rolling at once, we made a glorious racket!  (I have to give the staff of the hotel credit.  They embraced the weirdness that is fandom like good sports.  The valets were having a great time collecting badge ribbons.) Steve has the best D20.  It’s made of some kind of metal, and it rolls high and hard.  I told him he should name it the “Deathstar D20”!

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The Snow Jedi

I’m going to break one of my own rules here and post a photo of myself in my jammies. That is indeed the very light saber John made.  This goes to show how much fun I was having. I actually asked Pat to take a photo of me looking like this. This had to be my best Clockwork/Fanime/BayCon ever!

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So, How Was Your Day?


by Lillian Csernica on May 16, 2016

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My day began at 4:15 a.m. when Michael had a serious coughing fit.  Fortunately, I’d fallen asleep on the couch again, so I could dash through the kitchen to his room.  I spent the rest of the night on the couch in his room, getting up every time he had another coughing fit or I didn’t like the way his breathing sounded.

He had no fever and his blood oxygen level was OK, so I sent him to school

Took a nap.  Did my laundry.  Tried to get more writing done.  Failed miserably.

It's not the destination, but the journey that counts. Unless you're stuck in traffic. Then it's the destination.

Picked John up from school.  The usual traffic chaos ensued.  I’m not sure which I want more, an air horn or a laser cannon.

Drove to the tire repair center so I could get the new right rear tire put on in place of the spare.  Yesterday I got my first flat tire.  That was not a pleasant experience.  Had to call Chris for help.  It being Sunday, no garages were open.

The tire hadn’t come it yet.  It would arrive within the hour.

So John and I sat in the Burger King across the parking lot.  He did his homework and I cut more text out of the synopsis for Sword Master, Flower Maiden.

The Tire People called me, put my tire on, and I took John home.

Michael was not doing well.  The coughing situation continued at school.  My sister was on duty with Michael this afternoon.

I happened to go next door to talk to my neighbors, the ones on the left side, not the ones on the right who have the child I refer to as the Cute Little Hellspawn.  The man makes guitars and has forgotten more than I’ll ever learn about all the different parts and the amplifiers and speakers and all the other equipment that goes with playing guitar.  I spent most of an hour there listening to him talk about his guitars and play a few for me.

So of course, when I went back home, all hell was breaking loose because nobody knew I was next door.  My fault.  I should have said something before I left.

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We were out of Benadryl.  I had to drive to the store and buy some.  So I did.

I get home, and my sister had called one of our R.N.s, who said Michael would do better to take Tussin than Benadryl.  Did we have Tussin?  Sure, two doses worth.

So I drove back to the store.  Mind you, it was after seven p.m. and I hadn’t even managed to eat dinner yet.  I was tired, grumpy, and my vision seemed a bit blurred.

That’s when I realized I’d left the house wearing my computer glasses.

At the drugstore, there was a Perfect Storm of a new, inexperienced checker at the register, the customer ahead of me had a ton of items, and the debit card reader was acting up again.

I am home now.  I have a pile of manuscripts to read.  I have a synopsis to edit.  I have laundry to fold and put away.  And then there is the list of things I still have to do to get ready for BayCon and Clockwork Alchemy.

So tell me, how was your day?

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Filed under autism, Conventions, Depression, doctors, editing, Family, fantasy, Fiction, Food, frustration, Goals, homework, Humor, Lillian Csernica, memoirs, mother, parenting, Special needs, worry, Writing

K is for Key


by Lillian Csernica on April 13, 2016

 

On H Day you read some of my hotel stories.  Now let’s talk about keys!  Modern hotels have those plastic cards much like ATM cards that you stick in the slot and pull out again in order to unlock the door.  Sounds simple enough, right?  If only that were true.

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Norwescon, Seattle, WA — On our very first night in the DoubleTree, I had made the long and weary trek from the main area of the hotel all the way to Wing 5B, third floor, our room.  I swear, it took at least ten minutes to get there.  I stuck my key card into the slot.

The key did not work.  The little light did not turn green.  It worked earlier.  It would not work now.

I was less than thrilled at the prospect of hiking all the way back to the front desk to get this sorted out.  I couldn’t call the front desk on my cell, because the only number I could find was the main reservation line.  I was ready to start banging my head against the wall when a neighbor two doors down (Not the Vikings.  This was in the other direction.) offered me the use of his phone.  I called the front desk, they sent a security guard who checked my ID and verified that my key wouldn’t work.  I got a new key and got into our hotel room.  Later, when Pat and Nancy came back for the night, I felt a whole lot less embarrassed when their keys wouldn’t work either.  Lucky for them, I was there to open the door.  The next day all three of us went to the front desk for “fresh” keys.

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Citadines Karasuma-Gojo, Kyoto, Japan — After two planes, a bus, and a taxi, Pat and I arrived on the doorstep of the residential hotel where we would stay.  Our room was quite modern and very comfortable.  Problem: I could not find a light switch for the main room.  After some experimentation, I realized I had to put my room key into a slot that was up & down, as opposed to in & out. Thinking it was like most key card readers, I pushed my key down and pulled it up again.  The lights came on.  All was well.

Two minutes later, the lights went out.

After going through this twice more, I called the front desk.  Pat tells me that listening to my side of the conversation was pretty funny, because I was trying so hard to be calm and polite when I really wanted to smash something.  Once I made it clear to the folks at the front desk that the lights would not stay on, they sent somebody from Maintenance.  He provided us with the “key” to the solution: you had to leave the card in the slot to keep the lights on.  When you left, you took your key with you, which would ensure not leaving the lights on while you were out.  Wow.  Never seen that one before!

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This is art.  It’s not me.

BayCon — Once again, Pat and I were not staying in the main convention hotel.  Pat picked me up and drove us to the hotel she’d chosen.  It had been a really stressful week with the boys.  I was so tired I almost fell asleep in the car even though it was only late afternoon.  Pat got us checked in.  I followed her around the labyrinth of wrought iron stairways and hallways thronged by teenage girls in some kind of sports uniforms.  (They all seemed to be blonde, but maybe fatigue blurred my memories.)  Our room was located outside an exterior door, on this little chunk of balcony, where there was a bitter wind blowing as the sun began to set.

Guess what happened next?  That’s right.  The key wouldn’t work.

I was SO not in the mood for that.  Pat went back to the front desk while I stood there in the cold breeze and tried to stay awake.  Ten or fifteen minutes later Pat came back.  She stopped right outside the door, as far from me as she could get while still being on the balcony.

“Promise me you won’t kill me,” she said.

Adrenalin surged inside me, but not enough to make me move.  “What happened?”

“Promise me you won’t kill me.”

“Tell me what happened!”

“Promise me–”

“I’m too tired to kill you.  Now tell me what happened!”

She’d transposed two digits of our room number.  The key wouldn’t work because we were standing outside the wrong door.

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