#atozchallenge K is for Kids

by Lillian Csernica on April 12, 2019

by Lillian Csernica on April 12, 2019

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

Those people had no idea how right they were.

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

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

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

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

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

 

 

Memory Eternal

by Lillian Csernica on February 21, 2018

I know what it’s like to bury a child.

I lost my son James at 18 weeks when I ruptured early.

The first time I ever identified myself as a mother was when I signed the paperwork for my baby’s funeral arrangements. I’d never seen a coffin that small. Up to that point in my life, I’d never had reason to think about one or realize such a thing existed.

The day of the funeral, I stood there and had to see my baby wrapped in what would have been his first blanket, lying there in his little white satin-lined coffin. I had to stand there and watch while the priests chanted the funeral service and that little white coffin was lowered into that hole in the ground and I had to deal with knowing I’d never see my little boy grow up.

To the parents of all the children who have died in school shootings, I say I cannot imagine how much greater is the pain you’re being forced to suffer now. I never had the chance to get to know James, to see him smile or hear him laugh. You knew your sons and daughters. You watched them grow into fine young men and women with hopes and dreams for their futures.

Futures cut short by a tragedy that should not have been allowed to occur.

I know the agony I’ve had to live with, the tears I’ve shed every time I’ve visited my baby’s grave. I am so terribly sorry that all of you have been forced to experience the torment of such grief.

I promise you, I will do more than send you my thoughts and prayers. I will VOTE. I will MARCH. I will make phone calls and I will sign petitions. I will join the crowds chanting, “NEVER AGAIN!” until my throat is raw and my shirt is soaked with tears.

We must see to it that other children do not die. That other parents do not suffer the grief that you and I must endure. The children of this nation are our children. We must see to it they are safe.

How to Keep Halloween Safe and Happy

by Lillian Csernica on October 3, 2017

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.

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.

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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My Stress Managment is Too Stressful

by Lillian Csernica on June 30, 2016

How do I manage my stress?

• At the end of the day, I watch TV
• I go to the library and write in my journal or my work notebook.
• I get out in the sun and enjoy Nature.
• I play with my cats.
• I see my physical and mental health care professionals.

How do these activities increase my stress?

• Are you familiar with the term “binge watching”? There are a number of TV and cable shows available on Netflix, Hulu, et al. Some of my favorites include “Person of Interest,” “Once Upon A Time,” various Food network shows, and a few that try to document paranormal activity. One episode is just like one potato chip. One is never enough. Even though it’s summer, I still have to get up at 6:30 a.m. for Michael’s morning routine.  If I stay up too late watching TV (and I do), I don’t get enough sleep. Less sleep = more stress.

• Libraries are no longer the Sacred Sites of Silence. I often find a remote corner, depending on the time of day, but even so, noise travels. Shrieking toddlers, teenagers with no concept of muting their phones and themselves, and the endless clicking of everybody’s laptop keyboards. Makes me crazy. If it’s a bad time of day, I retreat to Denny’s. Yes, it’s noisy, but in Tourist Season, I’m OK with that.

• Santa Cruz County is full of beaches and national parks and redwoods. We’ve got artist colonies and museums and aquariums. And yes, this means we’ve also got Tourist Season. Generally speaking, I like tourists. I can take a stroll down the Boardwalk and hear three or four foreign languages being spoken. What stresses me out is the traffic. People who don’t know Hwy 17, Hwy 9, and the major artery streets can get confused, which means they slow down. Then there are the people who insist on going insanely fast no matter where they are.

• It’s summer. I have three cats who are all shedding. One is a black longhair who decided to hack up the mother of all hairballs on the stairway landing some time last night. The last thing I want to see first thing in the morning is some big furry disgusting mess on my stairs, especially when there’s a good chance it might be alive. I live in a somewhat more civilized area than I have in the past two towns where I’ve lived, but we still have all kinds of flora and fauna that can and do take me by surprise.

• Now we come to the big issue of the moment. I’m having trouble with my heart. Arrhythmia, which is no big deal. At least I hope not. I had an attack today that lasted long enough to make me consider going to Urgent Care. I made an appointment with my doctor. The thing is, my general practitioner is over the hill in San Jose. That means I’ll be driving Hwy 17 tomorrow. Tomorrow is the Friday of the 4th of July Weekend. That means on my way home I will be dealing with everybody on the face of this part of the planet who wants to spend the holiday weekend at the beach. On a slow day Hwy 17 is a nightmare. Just thinking about it stresses me out. I didn’t realize the logistics of the drive until after I’d made the appointment. Doesn’t matter. I have to see my doctor. This is one of those things that just can’t wait.

My 3rd Blog-iversary!

by Lillian Csernica on March 11, 2016

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.

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!

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.

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.

 

Family: The Other F-word

by Lillian Csernica on March 6, 2016

Life is hard when you have one special needs child.  Life gets exponentially harder when you have another child, especially when that child turns out to have special needs also.

The thing that makes life unbearable is when you run into the family member who knows more than you do about everything.  This person isn’t a doctor, a nurse, or a therapist of any sort.  This person might have teaching experience, might have volunteer experience, might even have some experience of special needs with his or her own child.

“A little learning is a dangerous thing.” — Alexander Pope, An Essay on Criticism

It’s bad enough that as a mother I’m under my own constant scrutiny, watching to see if I’m doing what the doctors and therapists tell me to do so my sons will grow up realizing as much of their potential as possible.  It’s bad enough when people who mean well but who have no real idea about daily life in a special needs household come to me with questions or suggestions that I know won’t work, I’ve tried and modified, or found effective five years ago.  Right here, right now, I know what’s best for my sons.  Why?  I’ve devoted my adult life to finding out.

What really hurts, what goes so deep that the emotional bruising lingers for days, is when a family member decides to tell me I don’t know what I’m doing, I’m doing it wrong, or I’m just doing nothing.  Yes, that’s right, just the other day I got a lecture on what a lazy, careless, thoughtless, inconsiderate mother I am.

Every mother knows how much this kind of attack hurts.  No matter how hard we try, there’s always that little nagging voice inside us that sees what we don’t do.  The greater effort we could have made.  The times when we were selfish enough to give ourselves a break.

One of the people I ought to be able to count on for support has just hit me where I live.  This person does not have a sterling track record in the parenting department, but if I dare point that our then I’m just being cruel and trying to dodge the real issue.

The nice thing about people you hire to work with your children is your option of firing them when the time comes.  You can’t fire family.  Blood is blood, even when there’s a strong temptation to spill some.

 

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.

On the first day of Christmas,

the spectrum gave to me

My child having a hissy.

On the second day of Christmas,

the spectrum gave to me

Two late refills

and my child having a hissy.

On the third day of Christmas

the spectrum gave to me

Three lost toys

Two late refills

and my child having a hissy.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Another Hospital Stay

by Lillian Csernica on July 20, 2015

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Michael has surgery on Wednesday morning.  Bright and early, and when I say early I mean I’ll be up at 3 a.m. prepping him for the 5 a.m. departure to the Oakland Children’s Hospital.  The anesthesiologist wants him to have a breathing treatment before we bring him in, along with his regular meds.  Wrestling my poor boy into his percussive therapy vest at that hour will be hard on both of us.

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Then we board our van for the long drive.  Caffeine will be essential.  Given my sleep patterns, I will probably just skip my insomnia meds and go for the long haul.  I’ve pulled overnighters before for Michael’s sake.  The fight-or-flight response brought on by seeing the medics wheel Michael away on the gurney should be good for a few solid hours of jittery alertness.  Yes, I’ve been through this with Michael before, and no, I’m not really worried because our surgeon is the best, but Things Happen.  Only fools tell themselves nothing could possibly go wrong and really believe that.

We’ve been told recovery time for this procedure is three to five days.  That’s what they tell everybody.  My husband is not thrilled about this, because our lives are planned very carefully on a day to day basis.  Nursing schedules, what John might be doing, what appointments my husband, my sister, or I might have.  I’m really hoping we get to come home by the weekend so Michael can recuperate in his familiar surroundings with all of his comforts.

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And this time, I’m going to positively ENGRAVE our name and address on Michael’s enteral feeding pump.  During one of our many hospital stays, the staff at that particular hospital sent our pump equipment home with some other patient.  We raised hell about that, believe me.  The hospital had to send a courier after the patient and parents to recover our equipment and deliver theirs.  Different model pumps make a world of difference, especially when the particular formula for the food is different.  The formula for Michael’s food tends to thicken up once it’s mixed.  That means the tube size on the feeding bag and the related equipment inside the pump had better be matched to the viscosity of the formula.  Otherwise the pump jams, the alarm goes off, and Michael doesn’t get fed.

Can you tell I’m already on edge?

Shift Change at the Doctor’s Office

by Lillian Csernica on June 5, 2015

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My son Michael is 19 now.  Still a teenager, although he is legally an adult.  Last year my husband and I had to file the appropriate papers and meet with the state officials who oversee the process of the appointment of a legal guardian for medically fragile, nonverbal people such as my son.  We are now not just his parents but his legal guardians as well.

That process brought home to me the fact that my son is moving on.  I have lived most of my adult life in the world of pediatric medical care.  Hospitals, doctors, nurses, therapists, caseworkers, counselors, and the vendors for all the equipment and supplies.  Bright colors, scrubs with cartoon characters, aquariums in the waiting rooms.  Environments meant to soothe and entertain children who are facing the frightening prospect of yet another doctor visit.

Yesterday my husband and I took Michael to the Oakland Children’s Hospital.  That’s a two hour drive, and our appointment was in the afternoon, so my husband had to take the day off from work.  “Family medical leave” is the category, rather than burning a vacation day.  Finding parking for our van was a real problem because the van’s roof is higher than the parking structure clearance.  We made it to the doctor’s office on time, but only because we know enough to leave a wide margin of extra time for traffic and the whole parking issue.

My son has a Baclofen pump, which is a medication pump implanted in his abdomen with a catheter than runs under the skin around his ribs to his spinal column.  Baclofen helps ease the spasticity in his muscles due to the cerebral palsy.  The battery in the pump is nearing the end of its charge, so it’s time to schedule the replacement surgery.  When the pump was implanted, I stayed with Michael for the five days he was in the hospital.  The replacement surgery is much simpler, so his stay won’t be as long.  Every surgery has its risks, but this doctor is a recognized expert in the procedure.

What disturbed me the most about this appointment happened when the doctor pointed out that soon Michael would need to see a doctor in this same field of medicine who treats adults.  On one hand, this isn’t a cause for anxiety because it makes perfect sense.  Our present surgeon is a specialist in pediatric cases.  My son has almost reached the legal drinking age.  Of course he would no longer see a children’s doctor.

On the other hand, as this thought sank in, I realized that the same will be true for all of Michael’s specialists:

The pediatrician.

The neurologist.

The gastroenterologist.

The pulmonologist.

The ophthamologist.

The orthopedic surgeon who put the Harrington rods in to correct Michael’s scoliosis.

Each of these doctors represents almost twenty years of expertise in the treatment of my son’s particular combination of medical problems.  The idea of having to leave the team that has helped us keep Michael healthy and strong through so many crises really upsets me.  No doubt we will be referred to doctors in whom our current team has confidence, but still.  Reading Michael’s chart in the context of one particular aspect of his care will not give each of these new specialists a real grasp of the complexity of Michael’s circumstances.

So much about the future frightens me.  Climate change.  Water rationing.  The increasing frequency of earthquakes (I live in California).  Making sure we have everything in place to provide both of my sons with a safe, healthy adulthood.  The movie “San Andreas” just opened.  I can’t go see it, no matter how good the reviews say it is.  I know that at some point I will freak out and have to leave the theater.

New doctors.  New names, new faces, new locations, new phone numbers, new logistics.  Finding out how they communicate, if they’re willing to listen, how much they’re willing to let me participate in planning Michael’s care.  We’ve been very fortunate with the pediatric physicians we’ve known.  People who go into pediatric medicine generally like children and make an effort to be pleasant and nonthreatening.  As we move into the world of adult care, where we’re all expected to act like “grown-ups,” I wonder about the people who will become responsible for maintaining Michael’s health.