Autism – A Family’s Journey and the Lights Along the Way

A picture of a family - father and mother sitting in front, three adult children (the two men on either side of the woman) standing in back - all wearing black shirts in front of a brown background.Note: April is National Autism Awareness Month.

Autism.

There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.

I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.

As I reflect on the past 30 years I recall so many memories. I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.

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Another Journey

A picture of a father and mother with their 2 sons stand on walkway next to a canal with tourists behind them and a bridge in the background.

The Bae family during trip to England

Note: April is National Autism Awareness Month.

Just like any other school day, Eugene, my son with autism, left on the bus this morning to go to a day program provided by our school district. For the last 20 years, he and I wait for the bus by sitting on our front porch. As he steps on the bus, he shouts at me with his happy high-pitched voice, “Bye Mom!” This is our ritual to begin each new day, to meet that day’s challenges, emotions, promises and hopes.

In June this year, he will age out from the district program. I cannot help being emotional whenever I think about his first day of preschool and the journey that Eugene and our family have been on since then. On that day, I cried in the car for two hours after separating from my miserable, crying child.

Since that first day, school has been a challenging place for both Eugene and me. While Eugene was learning the alphabet and phonics, I studied the never-ending list of special education acronyms.

Just like other special education moms in this world, when my child cried about his school work, I wept on my steering wheel, but when he was happy in school, I felt like I had the world on a string. At times, figuring out how to navigate the world of special education for our son with autism while struggling with his atypical behaviors seemed like a brutal mission for a family like us, and we often felt we were not understood, not just because of our heavy Korean accents

However, our fundamental concern has not changed in these 20 years, and that is to help our son reach the final destination for his journey – Eugene being able to live an independent and inclusive life in the community. Of course, this is the same concern shared by thousands of moms and dads who have children with disabilities.

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A Vocational Rehabilitation Success Story: Joseph Cali

Note: October is National Disability Employment Awareness Month.

The New Jersey Division of Vocational Rehabilitation Services (DVRS), which receives Federal funding from the Office of Special Education and Rehabilitative Services’ Rehabilitation Services Administration, is pleased to share Joseph’s (pictured above) success story in honor of National Disability Employment Awareness Month (NDEAM).


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Vocational Rehabilitation Success Story: George (Burt) Petley

Note: In recognition of National Disability Employment Awareness Month (NDEAM), Georgia Vocational Rehabilitation Agency (GVRA), a State VR agency which receives funding from the Office of Special Education and Rehabilitative Services’ Rehabilitation Services Administration, is pleased to share Burt’s success story. 

Burt began his path to employment in a sheltered workshop in 2007, where he did packaging and sorting tasks. Burt’s fellow participants and supervisors said he was dependable and with the support of his sister, Christie, Burt had reliable transportation. While Burt sometimes had difficulty with decision-making, repetitive tasks were an area where he excelled.

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Things People Say

Note: October is Down Syndrome Awareness Month.

 

Number One. “Did you know?”

They never complete the thought, as if just looking at him implies what they’re really asking. I ache to play dumb: Know what? That he would almost never cry as a baby and be a champion sleeper? That he would love to swim but hate to play soccer? That I could love him ‘til it hurts and still get so annoyed by some of his antics? As obnoxious as my brain screams for me to be, I simply answer “No. After losing the first one, I didn’t want to take any chances with this very wanted baby.”

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