2020 – Glass Half Empty or Half Full?

It’s September 8th, Labor Day Weekend has come and gone.  Fall will be here soon, with the promise of cooler weather and pumpkin-spiced everything.  Calling 2020 an odd year would be an understatement.  If I woke up tomorrow morning to find an alien ship on my front lawn, it wouldn’t faze me, I’d probably make them coffee and ask them about their trip.  That’s an indicator of how the year has gone so far.

I’m about to start my sixth month of working from home, fully aware I won’t be returning to the office anytime soon.  Back in March, when I went underground, they instructed us to stay home and flatten the curve, but in New York City, the line kept going straight up.  Those first months were rough. Bars, restaurants, and movie theaters were closed, the NBA, NHL, and Major League Baseball, the Kentucky Derby, and the 2020 Summer Olympics were all canceled.  Sports fans wondered aloud if this is what the Middle Ages were like. 

The biggest problem was people trying to lead their lives the way they did before the Pandemic — some still are. 

I’ve been home since St. Patrick’s Day, how’s that for irony?  In the 176 days I’ve been home, I realized the glass wasn’t empty or half full. Good things happened along the way too.  You just had to be paying attention.

In the past 176 days, I noticed:

I Enjoyed Spending Time With My Son – This may run counter to my last two posts.  I’ve written about remote learning with an overactive five-year-old with a short attention span as he ran, bounced, and climbed the walls like he had three Red Bulls for breakfast. It’s been enough to make me reach for my emotional-support bourbon.

The benefit of spending the past months with Cristian, is I’ve seen his growth and development in real-time.  He now dresses himself, is potty trained, and speaks more clearly.  Sitting next to him during class time and therapy sessions showed me how smart he is and gave me a glimpse of his playful personality.

Another Afternoon at the Jamaica Bay Wildlife Preserve

I Found Things Hiding In Plain Sight – Taking Cristian out to play was easy in March and April when the weather was cold and the parks were empty.  That changed when the weather warmed up in May.  When Cristian’s Saturday OT Sessions were canceled because of a state mandate, Esther suggested taking him to the Jamaica Bay Wildlife Preserve.  Set on 9,000 acres, the preserve has hiking trails, saltwater marshes, and freshwater ponds.  It was mostly empty and the perfect place to run, play, and look at the Canadian Geese.  I’ve driven past it on my way to the Rockaways for years.  It took a Pandemic for me to discover this amazing location, less than two miles from my home.

Esther and Cristian during his Moving-up Ceremony

I Enjoyed A Moving-Up Ceremony – If you know me or follow this blog, you probably read that last sentence and thought, WHAT!  That’s valid.  I always thought Moving-up Ceremonies were the product of a generation who received participation trophies in Little League.  Through the course of my education, I had three graduation ceremonies, junior high school, high school, and college.  Cristian had three in the past three years.  Every year, the wife gets excited and plans a celebration, while I have images of George and Weezy.  This year was different.  Maybe being locked up like a hermit for three months affected me, or that the virtual ceremony was quick. It lasted only 30 minutes.  Cristian finally got a piece of the pie.

Cristian enjoying his day at the zoo.

Family Day At A Socially Distant Zoo – As Cristian’s Moving-up Ceremony approached, Esther scoured the internet looking for a way to celebrate Cristian’s achievements in basic crayon.  New York Zoos and Aquariums were closed, so she searched across state lines. She found the Beardsley Zoo in Bridgeport, Connecticut.  They had just reopened with heavy restrictions and an emphasis on social distancing.  Guests reserved spots in advance, wore masks, and could only walk in designated areas.  A year ago, I had no idea we would have enjoyed an hour at the zoo as much as we did.

I Had Time To Write My Memoirs – No, really.  I’m aware the concept of a white-haired fifty-something man sitting at a typewriter and writing his memoirs is beyond cliché.  Like several bloggers I follow, I’ve considered adapting I’m Not Grandpa to book form.  I’ve spent the past two years reviewing notes and blog posts and even alluded to it here. I started a 10-week memoir-writing course in January and really enjoyed it.  When the virus hit, eight of us formed a writing group that meets on Wednesday nights.  Being around this talented group of writers has given me the discipline to stop thinking about writing a book and start writing one.

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Remote Learning — Our New Normal

Working remotely with Miss Jess, his Occupational Therapist.

It’s the Dog Days of Summer — the last days of August are winding down as we wait for Labor Day and the start of a new school year.  Under normal circumstances, Esther and I would be headed to the outlets to buy Cristian’s school clothes and wait for a list of school supplies from his teacher. This isn’t a normal year.

Back in March, schools closed, and they instructed people to work from home to flatten the curve.  At first, staying at home during a Global Pandemic seemed like going underground in a dystopian novel.  

At first, it seemed like a good idea.  Many embraced the thought of hunkering down, binge-watching Netflix, and consuming large amounts of comfort food.  If you aren’t a parent.

Keeping entertained with his markers before his school provided a schedule.

We didn’t have that luxury — I miss the days before we were parents.  Esther and I spent the first weeks keeping Cristian engaged and entertained, hoping he didn’t regress too much.  Let’s be honest, all of us, children and adults alike, were getting too much screen time in March.

Parents look to schools for a sense of security, but during those first days, there wasn’t any.  As an educator myself, I knew the situation was unprecedented. There was no road map for a Pandemic.  It wasn’t the school’s fault, Cristian’s school, The Gersh Academy, teaches students ranging in age from 5 through 21. Creating a new curriculum took time.

As late March became April, Cristian’s school sent us an educational app called IXL.  It’s like ABC Mouse.com which already on his tablet.  We figured if he was getting too much screen time — let it be productive.  Cristian enjoyed playing with his new math and language arts games.

Doing some IXL in my office at home.

A few weeks later, the school sent us their plan for remote learning. We were less than thrilled.  The schedule was overwhelming there were classes, therapy sessions, homework, and IXL assignments.  Besides this, Esther is an essential worker, so keeping Cristian educated and entertained fell into my lap. 

I don’t want to sound like a lazy parent, but the number of people who thought I could easily devote 12 to 14 hours a day to Cristian’s education amazed me.  Teachers, administrators, and therapists were all gung-ho.  I had to keep reminding them, “I HAVE A JOB, DAMN IT!” 

The answer was always, “Oh yes, I understand,” after withstanding my pissed-off growl.  I still wonder if they really did.

We made the most of our situation and hoped for the best.  Cristian responds better from structure and routine, so we approached remote learning like a regular school day.  Every morning, he dressed for school after breakfast.  We allowed him to bring his transitional object, a stuffed animal, and we got him excited about going back to school.

His first remote session was OT with Miss Jess.  We love Jess; she bonded with Cristian before the crisis. She truly understands him.  When he saw her on the screen, he smiled and said, “Miss Jess, my favorite teacher in the whole world.”

A pre-class selfie to loosen him up.

Cristian’s schedule was full. It included a 30-minute morning meeting every day, Occupational Therapy 3 times a week, Speech Therapy, 3 times a week, and ABA therapy once a week for 30 minutes.  We also paid out of pocket for a separate 30-minute OT session with a private instructor.  Then there was the homework.  They sent us six or seven worksheets a day.

Knowing our son, we scheduled his classes early in the day and left a 30-minute break between classes.  More than once, I finished one of Cristian’s Zoom sessions at school, before jumping on one for work.  

When the Spring semester ended in June, we enrolled Cristian in a six-week summer session. He does better when he’s kept occupied.  Summer sessions meant fewer students, more therapy.  Besides the spring schedule, he now received ABA five days a week and Physical Therapy twice a week.  The memory of holding an iPad in front of my five-year-old son, while the therapist walked him through yoga poses puts a smile on my face. 

Remote learning wasn’t always smooth sailing.  Cristian had a few rough days along the way.  There were meltdowns, and sometimes his ADHD kicked in after the fourth session of the morning.  The remnants of Tropical Storm Isaias left one of Cristian’s teachers without power for a few days, cancelling a few classes, but we pushed on.

Cristian starts first grade on September 2nd in a hybrid model.  Esther and I worry, but we feel the mix of live classes and social interaction could slow some regression.  We do this with some trepidation; we know remote learning is not the best option, but it’s what we have at the time and we wonder how long will it be until we will conduct his entire schedule from home.

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Never Underestimate The Little Things

Cristian as Baby Superman

I have a fond childhood memory getting haircuts from my father.  On Sunday mornings after church, while Mom made breakfast, and Abbott and Costello movies played in the background, Dad cut my brother Bob and my hair.  The long process usually resulted in a buzzcut — a crooked one — if we turned our heads or sneezed.

 A few years later, Dad became friends with a charming Italian man named Franco, when his family moved next door to us.  Dad helped Franco with household projects, and Franco, who was a barber, cut our hair — retiring Dad’s scissors once and for all.  The fee for these projects was a bottle of wine.

When my wife Esther and I became parents, I looked forward to a similar father/son bonding moment.  We’d get haircuts then go for a slice of pizza afterward.  We waited over a year for Cristian’s first haircut.  We weren’t lazy parents but his birthday is in October. Cristian’s size and long wavy hair made him a perfect Baby Superman for Halloween.

Cristian’s first haircut, before the tears started.

A week after Halloween, Franco came over for the long-awaited haircut.  It didn’t go well.  Although Esther did her best to distract the baby with her iPhone and his favorite toys, he squirmed, cried and screamed.  This concerned us, but Franco reassured us, telling us this was common for kids his age.

It wasn’t until Cristian was diagnosed as On the Spectrum, that we learned about the sensory issues autistic children experience.  They could be under-sensitive to pain, yet hyper-sensitive to clipping nails or haircuts.  Esther clips Cristian’s nails while he sleeps, and his feet still flinch involuntarily while clipping his toenails.  We found a solution for his nails — haircuts are another matter.

For Cristian, the vibration of metal clippers is like someone running their fingernails across a blackboard.  Franco no longer cuts Cristian’s hair, he became afraid of him and started crying whenever he’d visit.  Cristian’s haircuts are now a well-choreographed family project.  He sits in Mommy’s lap in the barber’s chair, while I stand on one side with the barber on the other.  Working quickly, I hold Cristian’s head or chest, as the barber cuts one side or the other, while keeping a watchful eye for a headbutt or a kick in the crotch.  He’s only five, but a well-placed kick still hurts.

We recently found a glimmer of hope.  A parent in a support group we attend recommended a barbershop in Whitestone catering to the autistic community.  During our first visit, Cristian’s barber told us, “Give me three haircuts, and you’ll see a difference.”  He was sensitive to Cristian’s specific needs and uses specially designed plastic clippers. 

His haircuts still haven’t gone smoothly, but they aren’t the traumatic ordeal they once were.  Considering where we started that’s progress.

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A Gift For a Day and Another For a Lifetime.

It’s been a while since I’ve posted new material – about eight months.   A few things changed since my last post while others have stayed the same.  Cristian has kept Esther and I busy.  I’ve been writing — just not for this blog.  I’ll be posting about that in 2020.

A few months ago, Cristian turned 5.  Last year, I wrote a heartfelt post for his birthday, this year we focused on giving him a birthday party that focused on the children.  Too many times, we’ve gone to birthday parties disguised as weddings.  I’ll admit, I enjoyed the bacon-wrapped scallops, pigs in a blanket, and open bar — a lot — it wasn’t how we wanted to celebrate Cristian’s birthday.   Cristian and his cousins had a blast running and running and bouncing around the trampoline park where we celebrated his birthday.

In addition to planning his birthday, Esther and I spent much of 2019 finding a good kindergarten for Cristian.  The old me would have spent a good twenty minutes goofing on any person using that last sentence.  It’s amazing how one’s opinion changes when one’s perspective does.  I still goof on things, like gender-reveal parties — I was at one of those a few days ago.

In New York City, special needs children, including those with autism, cognitive delays, emotional disturbances, sensory impairments, or multiple disabilities are assigned to a District 75 School.  We spent much of the past year having Cristian evaluated by various mental health professionals and specialists or conducting site visits of potential schools.  This daunting process is more difficult because the bureaucrats parents are required to work with — they don’t make the process easy. 

The system is Darwinian — set up for most to fail.  Esther’s background as an Early Intervention and CPSE (Committee of Special Education) Coordinator gave her insight to how the system worked — but it didn’t make navigating it easier.  To someone like me, it seemed like the goal was to have parents bang their heads against the wall from all the bureaucratic nonsense.  After a few too many bumps and bruises, many give up and quit.

Cristian is fortunate that his favorite person is a capable advocate.  People meeting Esther learn quickly that she doesn’t give up easily.  Whether she’s a running a marathon, or fighting for her son’s services—his mom has a never-say die attitude that serves him well. 

During an OT session

By late Summer, after a series of phone calls to case managers, and follow-ups with their supervisors, we ensured placement in a District 75 school where we felt Cristian’s needs would be met.  At the end of July, Esther and I toured the school with a group of anxious parents.  The administrators said all the right things as we visited the facilities where the children would get therapy and services.  Everything should have been fine, but looking over at Esther, I realized they weren’t.  She wasn’t feeling it in her gut.  If eleven years together taught me anything, it’s trust her gut. 

Trusting her intuition, she found a private school in Nassau County where she was blown away by what she saw.  They use the ABA (Applied Behavior Analysis) method, which Cristian has responded to.  Unlike the Public Schools we toured, they were better equipped to deal with Cristian’s specific needs.  Besides being autistic, he’s ADHD.  In a classroom setting, he’s a runner.  He ran out of his preschool classroom during this Turning Five Evaluation.  That incident stuck with Esther.  The non-answers she received on several school tours gave her that funny feeling.

A week later, Cristian and I joined Esther for a tour of this private school in West Hempstead — The Gersh Academy.  After several months of touring schools and feeling something was missing, we found a school that got Cristian.  There was one problem — the school was pricy — out of our budget pricey. 

After some research, we retained the services of a lawyer to take Cristian’s case to the Department of Education.  If the DOE cannot meet his specific needs, let’s put him in an environment with professionals who can.

Cristian started at The Gersh Academy in September, while his case is still pending.  Since then, his growth and development have been remarkable.

As I look back on 2019, I’ll remember two things about Cristian.  The joy and happiness he showed us bouncing around a trampoline park with his cousins and closest friends on his fifth birthday.  The other is the meetings, phone calls, and evaluations to ensure we placed Cristian in an environment that ensured his growth and development when that day at the trampoline park is a distant memory. 

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The Confessions of a Father of An Autistic Child

This is the face of an autism.

Hi, my name is Frank Priegue, I’m the father of an autistic child.  It felt good to write that.  This isn’t a deeply held secret, our family and friends are aware.  If you follow me on Instagram, I’ve included hashtags like #autism, #autismawareness, and #autismdads to my posts for over a year.  I’ve alluded to Cristian’s autism but never dedicated a post to this topic—until now.  This is Cristian’s official coming out as an autistic child.

Although greater awareness exists these days, few individuals without a relationship to someone on the spectrum know much about Autism Spectrum Disorder.  Before I became a parent, my only exposure came from the film Rainman.  I knew nothing of IEPs, Developmental Pediatricians, or District 75 schools.

Like many parents, I went through a stage of denial when Cristian was diagnosed.  My wife and I sat quietly with our mouths hanging open as we read the diagnosis.  How could our child be autistic?  He had a few eccentricities, which a specialist diagnose as sensory issues or developmental delays, but that doesn’t mean he’s autistic.  I convinced myself that autism is the flavor of the month diagnosis doctors are handing out in large numbers until the next one comes along.

Denial can be a potent concept.  You can justify anything if you repeat it enough—I know this because I did this with Cristian.  Esther and I are first-time parents of a delightful little boy.  He loves attention and admiration, rewarding those who played with him with a 1000-watt smile.  So when we noticed oddities, I easily justified them.

Cristian didn’t say his first words until well after a year, but so did I.  I didn’t speak until just before my second birthday.  I was a Stay at Home Dad for two years, working as a medical biller.  Cristian played with his toys or watched Sesame Street for a while I reviewed spreadsheets.  I kept convincing myself—he wasn’t receiving enough stimuli.

How can our child be autistic?

Cristian played by himself during story time at the local library and didn’t interact with the other kids during his My Gym class.  I thought it was odd he didn’t play with children he’s seen for several months.  The teachers told me many children less than a year old engaged in parallel play, so I didn’t think very much about it.  Cristian is an only child of older parents, we tried scheduling playdates with his cousins to socialize him, but they were 3 and 4 years older than him.

I was aware there were a few peculiarities making him different from other kids his age, but he was a healthy baby, his pediatrician assured of us this.  He scored high on the growth charts and he liked adults.  How could there be something wrong with him?

It became increasingly difficult to keep ignoring the obvious.  On a trip to Puerto Rico to introduce Cristian to the family did the differences become more apparent.  Esther noticed that he wasn’t exhibiting appropriate behavior for a year-old baby, as he played with cousins who were his age.

Despite Esther’s background as an early-intervention coordinator, I wasn’t totally convinced.  She was also a first-time mom, who worried if it was too hot or cold.  First-time moms worry about everything. It wasn’t until Cristian started rocking back and forth in his car seat with greater frequency or ran back and forth down the hallway in our home like he was running wind sprints that we decided to get him evaluated.

Being the parents of a special-needs child is challenging, but raising any child, is about meeting challenges when they arise, and giving the illusion that you have everything under control.  Don’t feel sorry for Cristian, he’s not feeling sorry for himself.  He’s a happy four-year old, who loves to run, play, and read books.  As his parents, all we ask for is patience, understanding and awareness.  Take the time to get to know him and be part of his world on his terms.  You might be surprised at what you see.

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