IEP

Raising an Autistic Child in the Era of COVID19

I'm Not Grandpa
  • Spending time at the Jamaica Bay Wildlife Preserve

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.   

  • A well-planned trip to the playground, he played for 40 minutes before the rain started.

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.

  • Burning off some energy early on a Monday morning.

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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The Confessions of a Father of An Autistic Child

I'm Not Grandpa

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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