Tag Archives: ASD

A mother’s story: The challenges of living with Autism


| aaltman@queenscourier.com

THE COURIER/Photo by Alexa Altman

Edna Luna’s curly-headed, big-eyed little boy was always a little different.

The way he related to the world, his cognitions, were unlike those of other children.

Concerned, Luna took her toddler-aged son, Winter, to see a doctor, who diagnosed him with Pervasive Developmental Disorder (PDD) – a nebulous term for any delay in progression.

Displeased with the doctor’s unspecific diagnosis, Luna’s desperation took her to the Internet, searching through countless testimonials of parents in similar situations.

“My child doesn’t respond when spoken to.”

“My child is hypersensitive to noise.”

“My child doesn’t interact with other children.”

The screen said “Autism.”

Luna is a single mother living in Flushing with her two sons, nine-year-old Winter and 19-year-old Nathaniel (Nate), both of whom are Autistic.

She too is Autistic.

According to the Centers for Disease Control (CDC), one percent of all children are classified as living with an Autism Spectrum Disorder (ASD). Parents of one child with ASD have a two to eight percent chance of having a second child who is also affected.

For Luna and her two sons, routine is essential.

Winter awakes at 6:30 every morning. He attends third grade at Robin Sue Ward School, after which Luna picks him up and the pair run errands or walk the links at a nearby golf course. Wherever they go, Winter needs fair warning. There can be no surprises.

Some nights, Winter wakes up at 3 a.m. Through the wall, Luna hears her son reciting lines from movies or conversations he heard throughout the day. She says it’s his way of making sense of the world.

“At the end of the day you’re exhausted,” said Luna. “A lot of the things you feel during the day you had to keep to yourself. Just connecting to the world is a challenge.”

And other people aren’t kind.

“They see you reprimand your child and people get rude,” said Luna. “Sometimes people talk to him and he won’t talk back. If it’s too loud, he won’t sit still. Sometimes he just gets frustrated and has a meltdown.”

Luna wishes others could relate and that people understood ways to connect with affected children.

There are days when Nate refuses to leave his room, spending the entire day playing computer games.

An interest in computers evolved into expertise. Nate can take apart and reassemble hard drives, motherboards and monitors. He also taught himself how to build guitars.

“Anything he gets into, he’s an expert,” said Luna.

Constant teasing in school caused Nate to develop anxiety – occurrences unnoticed until students showed up at Luna’s door to tell her what had been happening.

Edna says Nate can appear angry and disrespectful, even lazy. Luna feels he needs constant supervision.

When Nate was 11, he expressed his struggles to his mother – the frustrations of social interaction, resorting to mimicking the actions of his classmates.

Luna justified his behavior. After all, it had been how she acted in school.

As her own Autism diagnosis, unseen for almost 30 years, became clear, she questioned life-long mannerisms previously perceived as normal.

As a child, Luna arranged her mother’s bobby pins in a long, straight line across the dresser, a compulsion she continued for years. When overwhelmed, she repeatedly flapped her hands at chest level — a practice she would later discover was called stimming. At night, Luna opened the window to her fifth-floor Astoria apartment, sat on the ledge and dangled her feet outside. She felt no danger, no fear – a symptom, she now knows, of Autism.

Luna also admitted that her childhood had been rather friendless.

“I never spoke to anyone,” she said. “I was a loner.”

Now Luna works as a part-time makeup artist and occasionally sings at restaurants around the borough. Several health issues make it difficult for her to hold a full-time job and her sons could need her at any minute.

Her passion, however, lies in her charity work. Budget cuts to local programs have driven her to work even harder.

My Charity 4 Kids, an organization in conjunction with Savannah’s Family Workshop and Volunteer One, assists children afflicted with Autism, Asperger Symdrome and blindness. Luna hopes to create workshops for parents, helping them adjust to raising a developmentally-disabled child.

While she admits to not being an expert, Luna says there’s a certain knowledge you gain from raising an affected child and from living with Autism yourself.