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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Raising an Autistic Child in the Era of COVID19

Like about 90% of Americans, I’ve spent the two months under a stay-at-home order.  Being introverted this would have appealed to me 15 years ago. I would have happily worked, read, and watched movies from my tiny one-bedroom apartment.  I lead a different life than that younger, thinner guy.  I’m a husband and father to an energetic special needs child. 

Cristian, like many autistic children, thrives on routine.  Until recently, the school bus picked him up five days a week at 7:15.  For Cristian, school was about more than basic math and advanced crayon.  Cristian’s school, the Gersh Academy, structured his schedule so his ABA, OT, PT, and Speech therapies were part of his weekly schedule, per his IEP.  When he’s on a routine, Cristian is a cute five-year-old boy — disrupt his routine, and cute goes flying out the window.

My son’s world changed on March 15th, when Nassau County closed their schools, because of the pandemic.  Like many parents, Esther hoped it would be a short-term thing.  As a news junkie watching the numbers rise and the daily news briefings, I knew he wasn’t going back to school anytime soon. 

The Pandemic is an unprecedented event, and for two weeks, schools scrambled putting together plans for virtual learning.  Esther and I put together our own plan to keep Cristian engaged, entertained, and to minimize regression.  Besides being on the spectrum, Cristian is ADHD, the hyperactivity is more challenging than the autism.  Esther and I have sought outlets for his excess energy — it’s become more challenging in the era of social distancing.   

The first days were easy. I’d time his trips to parks so he could run around the playground before the locals came out for their morning walks or before it started raining.  Two weeks later, I took Cristian to the Jamaica Bay Wildlife Preserve; it was big and empty or taking him with me to the cemetery.  As I paid respects to my Dad, on what would have been his 94th birthday, Cristian ran around a large, empty grass field, enclosed by iron gates.  Sometimes you have to get creative.

I’ve spent the past two months home with Cristian, juggling, working from home with his schoolwork.  Morning Zoom classes and therapy sessions part of our daily routine.  Like most people, I can’t wait until our lives return to normal.  The challenge is opening our society in a responsible way and hoping Cristian’s regression is minimal.

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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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