Tag Archives: parenting

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

My 3rd Blog-iversary!


by Lillian Csernica on March 11, 2016

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Three years ago today I began my adventure into the world of blogging.  I have met many delightful people in the course of reading comments here and leaving my own replies on other folks’ blogs.  The A to Z Blog Challenge is coming up next month.  I look forward to participating once again.  This is a wonderful way to meet new people and learn interesting tidbits about a wide variety of topics.

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As the sign says, on Monday, March 21, all of us who are participating will be declaring the zany topics we’ve chosen.  The first year I participated, I chose writing terms.  For the second year, unusual items made from chocolate.  Last year I came up with 26 really bad sword & sorcery movies.  This year?  I shall be exploring one of my favorite subjects.  Be here on the 21st for the big unveiling!

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Let me offer a deep and sincere thank you to every single one of you who has been kind enough to stop by, take a look, and even leave some comments.  It means so much to me.  That sounds corny, but it’s true.  We may never meet face to face in this life, but even so I am so glad to have the opportunity to share ideas with you and hear what you have to say.

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Life with my two sons can often be difficult to the point of heartbreaking.  I thank you also for all your prayers, kind thoughts, and good wishes as my boys and I have made it through one of our more difficult years.  God bless you for giving me some virtual shoulders to lean on when I’ve been in serious need of support.

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Counting Down to Christmas


by Lillian Csernica on December 20th, 2015

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If I didn’t keep a running To Do list, I don’t know how I’d get anything done.  When I’m stressed out I tend to lose my long range focus and the ability to structure my time effectively.  I’ve done a lot of my shopping online this year.  The rain coming down in buckets outside my window makes me very happy for that option.

This year has been such an ordeal for our family.  I decided back in November to pay attention to all those articles on managing holiday stress and choose the activities most important and meaningful for both me and the boys.

Here’s what got checked off the To Do list this weekend:

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On Saturday night I took John to “The Nutcracker.”  He’s been asking to go tothe ballet for a month or two now.  We know he enjoys seeing and hearing a live orchestra perform.  I think the main attraction of the ballet was A) the costumes for this particular show and B) the emphasis on all those pretty girls with their long legs.

The Santa Cruz Ballet Theater put on a marvelous performance.  Hearing Tchaikovsky played live was a treat in itself.  The production values and the special effects left both me and John wide-eyed with wonder.  As for the dancing….  Wow.  The Snow Queen and her Cavalier made it seem like gravity had no power over them at all.  This was the first of John’s Christmas presents.  He kept saying it was “Amazing!”

John and I had dinner on Pacific Avenue after the show, talking about our favorite parts of the show.  Despite the 40+ degree weather, we stopped in at Cold Stone Creamery for some dark chocolate peppermint ice cream.   Oh my stars and garters.  That was heaven on a spoon!

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Today Chris and John got our Christmas tree.  It’s become a tradition for the two of them to go to a tree farm and cut down a fresh tree.  I had to admire their determination.  Soon after they left, the skies darkened and it started raining.  They did return victorious, if a little damp.

John has graduated to stringing the lights on the tree himself.  He loves the colored lights that blink on and off and change colors in varying patterns.  Out came all the boxes from the garage with our wide variety of Christmas ornaments, table linens, and John’s personal treasure, his Peanuts cuckoo clock.  On the hour, Snoopy comes out where the cuckoo would be and the Peanuts theme song plays.  We put this up only during the holiday season.

Once the lights and gold tinsel garlands were in place, Michael sat in his wheelchair to help choose ornaments and where they should go.  As each of us pulled the tissue off an ornament, we’d hold it up for Michael to see and ask him if that one should hang on the tree.  Once he gave us his yes or no, then he’d pick the right spot on the tree.  After spending two months watching Michael lying there in his ICU bed, I cannot tell you the joy I felt seeing him sitting there happy and smiling, reaching out to touch an ornament or grab John’s shirt and make him laugh.  Michael’s R.N., a wonderful lady named Joan, had a good time helping with the ornaments.  They were all new to her, so I shared some of the stories attached to them.

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Here it is, courtesy of Michael and John!

As for me, I put on a Christmas jazz CD and drank eggnog.  All of a sudden, there it was.  Our family gathered around the Christmas tree, breathing in the fresh pine scent, joking about hanging the good ornaments up where our three cats can’t get at them.  My mother is visiting my brother right now, but she’ll be back for Christmas Eve.  My sister is down in Southern California, but she’ll be back for New Year’s.  It’s good to have time with just us and the boys.

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In my family we party a lot during the holidays.  My birthday is December 29.  My sister’s is on January 1st, and my mother’s on January 3rd.  I keep careful track of who gave who this or that Christmas present, along with who gave who that birthday gift.  Lists!  More lists!  One of the traditions I consider most important is writing thank-you notes.  Michael likes to create his own stationery, and John will add little drawings to his cards.

We have so much to be grateful for, and so many people to whom we owe our thanks.

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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.

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On the first day of Christmas,

the spectrum gave to me

My child having a hissy.

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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.

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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.

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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.

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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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Another Hospital Stay, Part 4: We’re Home!


by Lillian Csernica on September 4, 2015

Yes, it’s true.  We were discharged on Monday.  Michael is looking good.  He needs to gain back the weight he lost in the hospital, and he tires easily, but he’s in good spirits and that big grin is back.  We’ve had to replace his ketogenic diet with a formula that’s easier on his kidneys.  The nephrologist would like us to wait six months for full recovery before putting Michael back on the ketogenic diet.  He’s now on one additional anti-seizure medication which seems to be working.  He’s had a few very brief seizures, but nothing beyond the frequency and intensity he was experiencing before he went to the hospital.

I’m not good for much this week.  I’ve been reading and sleeping and binge-watching the first season of “Grimm.”  I’ve seen the occasional random episode of the show, but I’d never gotten the whole story.

Chris hired a new nurse.  We need her, because we won’t be sending Michael back to school for at least two weeks.  It’s always a little strange having somebody new in the house.  On her first day, which was also our first day at home,  the upstairs shower decided to just keep running no matter how I turned the faucets, even with pliers.  I thought I was going to have to start bailing out the bath tub through the window, but Chris managed to get a plumber to the house within ten minutes of me calling about the potential disaster.

Never a dull moment.  I think I might have that engraved on my headstone.

School is in, the neighbors are behaving themselves, and the cats are very happy to see me.  Every night there’s a competition to see who gets to sit on my lap as I lounge on the couch watching Netflix or Amazon or Hulu.  Now that I’m back, all is right in the feline universe.

I have two ten-page stories due by the end of October, then NaNoWriMo starts.  I worked on two or three new short stories while I was in the hospital.  I took a few big blank notebooks with me.  If I wasn’t writing in my personal journal, I was making notes or writing some piece of fiction.  I’ll have to devote a post to what happened as the hospital staff got to know me and word spread about me being a “real writer.”  Even in this digital age, some people still have what borders on superstitious awe toward those of us who can make the words keep coming.

It’s good to be home.

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Filed under Baclofen pump, charity, Depression, doctors, Family, frustration, hospital, mother, perspective, Special needs, worry, Writing

The Not So Itsy Bitsy Spider


by Lillian Csernica on July 2, 2015

NOTE: Today’s post does not include graphics or illustrations.  It does include links.  If you want to take a look at what I’m about to discuss, go for it.

Today I did something that could be considered very brave or very silly, depending on how you feel about the key element.  While I was out today running errands, John asked to stop at the pet store and “visit the kitties.”  (He feels bad for them since they don’t have homes yet.) After paying his respects to each of the cats, John wanted to see the other critters.  I sent him off on his own for a few minutes while I looked for something I needed.  When I caught up to him, he was eager to show me the rodents and the birds and one other very unusual creature.

A pink toe tarantula.  (I am not making this up.  That was the name on the sign beside the container.)

John knows I don’t like spiders, so he promptly reassured me.  “You don’t have to worry about that right now,” he said.  I’m never sure exactly what he means by that statement, which he makes whenever he doesn’t want me to think about a particular subject.  So I asked him where the tarantula was.  In its cage in the reptile aisle.  I must have gone pale or given off some other obvious sign of discomfort, because John reassured me again.

Some years ago, my husband accused me of teaching John to be afraid of spiders.  I saw a spider, I screamed.  John will imitate the ways he sees other people respond to situations.  I am the person he looks to the most for this behavior modeling.  (That’s done a lot for my character, believe me.)  So John learned that spiders are scary and when you see one you scream.  The first time I heard John scream, I was in motion before I consciously knew I’d started running down the hall.  John was about to take a shower.  In the shower stall hung one of those big, skinny spiders that Americans call “Daddy Long Legs.”  They don’t scare me.  I tolerate them because they will catch and eat mosquitoes.  Michael can’t slap mosquitoes when they land on him, so I’m all for anything that kills off any mosquitoes that get into the house.

I told John the Daddy Long Legs wasn’t a bad spider.  He was our friend because he helped make sure neither Michael nor I got bitten by mosquitoes.  John was not entirely convinced.  I got rid of the spider.  We had to go through this a number of times with spiders of varying sizes.  If I find any arachnid bigger than a quarter inside my house, it meets the zero tolerance policy with an abrupt squish.  I know some people who will catch the spider and release it outdoors.  I salute the courage of those people.  I can’t manage that, at least not on my own.  Other people have done it for me.

Back to today.  John had discovered this tarantula, and  he thought it was interesting.  He warned me away from it, which was very kind of him.  I had a sudden need to prove to my son that I could look at that tarantula without screaming.  It’s just a bug.  I’m larger and stronger by several orders of magnitude, right?  So I asked him to show me to the reptile aisle.  Truth be told, I really wanted to know if this tarantula actually had pink toes.  Spiders don’t have toes.  Their legs end in a sort of hook that helps them cling to the surfaces they climb.  That’s true of redwood tarantulas, which are plentiful here in the mountains where I live.

Why is it that every time I’ve ever seen a tarantula in a pet store, it’s been trying to climb up the walls of its container?  And why has the light source always been behind it, making it look that much bigger and scarier?

I’m not the best judge of these matters, but the tarantula in question did look larger than a fifty cent piece but smaller than a silver dollar.  That means it wasn’t a baby any more, but it certainly had not achieved its full adult growth.  I was looking at the bottom of it, and it wasn’t moving, so I didn’t have the panic attack that tarantulas usually bring on.  I confess I did reach back to hold the hand of my big, strong, sixteen year old son.  I made some observations about the tarantula, John said something, and that was that.  We had a look at the tarantula together, and Mom didn’t freak out.

John will remember this.  He will remember that there is one less thing in the world Mom is afraid of.  Maybe some day when he’s scared, he’ll remember that I found a way to be brave enough to look at the little tarantula and see it for what it really was.  Maybe that will get him through a tough moment, and give him the model he needs for getting through others.

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Filed under autism, cats, Family, Goals, Horror, mother, Special needs, Writing

Family Matters: Explaining Why I Have “Bad Days”


by Lillian Csernica on June 28, 2015

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I don’t like to think of myself as having a mental illness.  For me, that conjures up images of people wearing straightjackets while they huddle inside padded rooms.  Such images are inaccurate but all too common, thanks to horror movies and other sources that prefer shock value to realistic compassion.  The fact is I do have a mental illness: Major Depressive Disorder.  Most days I get up, get dressed, and go about my day in a fairly stable mood, laughing with my kids and taking care of business.  Other days I shuffle around in my bathrobe, dragging myself through the essential tasks when all I want to do is hide under my blankets.

Yes, I talk about this a lot.  It’s important to do so.  Depression is hard enough to deal with when you have what most people would consider a “normal” life.   I have two special needs children.  I’ve met several of the parents of my sons’ classmates as the boys have gone from elementary school through junior high and high school.  One of the things special needs parents most often have in common is depression.  We struggle to keep it from affecting our children.  That’s difficult, because special needs children and adults can be very sensitive to the emotional climate around them.  They tune into their primary caregivers because those are the people they depend on to help them get through each day.

Let me share with you this article with its ten suggestions.  I found it to be useful, reassuring, and proof that I have been doing some things right.  There are days when that kind of validation is very precious.

How To Support Your Kids Through A Parent’s Mental Illness | Dr. Leslie CAPEHART | YourTango.

http://www.clipartpanda.com

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The Very Inspiring Blogger Award!


by Lillian Csernica on September 16, 2014

 

 

Well! Today is certainly turning out to be a day for wonderful surprises.  Someone gave me flowers.  It looks like I may be making actual progress with John’s current school difficulties.  Just now I discovered that rgemom, the dear lady who writes Three’s a Herd, has nominated me for The Very Inspiring Blogger Award.  Thank you SO much.  Life is good!

Here are the rules of the award:

  • Thank and link to the person who nominated you.
  • List the rules and display the award.
  • Share seven facts about yourself.
  • Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
  • Optional: display the award logo on your blog and follow the blogger who nominated you

 

Seven Facts About Me

1) I own a handmade, hot pink, thong-wearing felt Hamster that has been autographed by Esther Friesner herself.

2) As much as I hate needles, I have given serious thought to the tattoo design I’d want and where it would be located.  Purely hypothetical, of course.

3. I really don’t see the point of celery.

4)I have a terrible weakness for blue-eyed Irishmen who can sing.

5) My original career choice was Marine Biology.  That came to a screeching halt the day I learned that in the process of dissecting the higher life forms, I would one day be called upon to work on a cat.  Nope.  Sorry.  Not for love or money.

6) Back when I was in high school I owned a Oujia board, the classic Milton Bradley model sold in game stores everywhere.  I no longer own a Ouija board, and I will never go near one again.

7) My middle name is Irene.  How often do you hear that one these days?

 

The 15 Blogs I Consider Inspirational and Award-worthy:

1) Tabula Candida

2) Broadside

3) Writers In The Storm

4) terribleminds

5) Make Me A Sammich

6) Raising 5 Kids with Disabilities and Remaining Sane Blog

7) The Red Pen of Doom

8) Faithmummy

9) Katana/Pen

10) Bitter Gertrude

11) Deidra Alexander’s Blog

12) harm:less drudg:ery

13) Blogging From A to Z Challenge

14) Bone Speak

15) Cats at the Bar

 I hope to live up to the honor of this award in the posts that I write and the comments that I make.  Thank you again!

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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

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Oh! Take a shit, read a story. - My Mother on flash fiction

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