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Autism to opportunity — the truth about our son

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By LISA SMITH MOLINARI, meatandpotatoes.com

“It’s a boy,” Doc Walker said as plainly as, “Please pass the salt.”

It was April 4, 1995, at the hospital in Monterey, California. After 12 hours of labor turned the whites of my eyes blood red, I eagerly grasped the waxy, bluish, 9-pound baby boy we named Hayden.

Two weeks later, when Hayden wouldn’t stop crying and refused to feed, I called the pediatrician. Hayden had just smiled at us for the first time that morning. But my instincts were telling me something was wrong.

The pediatrician met us at his closed office — you don’t mess around when newborns are concerned. As soon as he saw the mottled color of Hayden’s skin, he ordered us to go directly to the emergency room. After a hurried spinal tap, his suspicions were confirmed. Hayden had meningitis and was in critical condition.

We spent the next two weeks in neonatal intensive care, with our newborn splayed on a platform, attached to wires and an IV. The thought that our baby could die was so unfathomable we couldn’t accept it, so we carried on as if he was just fine — nothing antibiotics can’t handle.

It wasn’t until Hayden was no longer septic that we shed tears. The knowledge that he had survived allowed us to finally face the truth of what had just happened. The pediatrician ordered tests for Hayden’s hearing in case there was residual neurological damage, but none of that mattered. Our baby boy was alive.

When Hayden turned 3, we could no longer deny the significant delays in his speech, motor skills and cognitive skills.

“Your son has atypical autism,” an Air Force developmental pediatrician at Lakenheath Royal Air Force Base in England told us.

I think of that doctor with his feet up on his desk, but my distain for him may have tainted my memories. He seemed arrogant, insensitive: matter-of-fact. How could he say such a thing about our toe-headed little boy in Osh Kosh B’Gosh overalls? As he dropped this bomb on our otherwise happy lives, he sat at his desk surrounded by photographs of his three normal sons playing baseball, blowing out birthday candles, accepting citizenship awards.

What did the future hold for our son now that he was diagnosed with autism?

Francis and I were devastated.

But, just like the crisis with Hayden when he was a newborn, we couldn’t fathom that he would not lead a normal life. It was unthinkable. So we did every kind of therapy we could, always believing that Hayden would make progress.

We found a doctor who gave us the positive hope we were looking for, and embarked on a full-time home therapy program called “Floor Time,” along with a special diet, sensory integration therapy, speech therapy, occupational therapy, and physical therapy. It was like running a marathon — seemingly endless, exhausting work without breaks — but it was worth it because we believed that there was a finish line.

Hayden progressed, sometimes painfully slowly, sometimes in exhilarating spurts.

After three years of therapies, Hayden’s autism diagnosis (Pervasive Developmental Disorder Not Otherwise Specified) was downgraded to a sensory regulatory disorder. He no longer fit the criteria for an autism spectrum disorder, but we kept going. And Hayden kept progressing, testing out of all therapies by 6th grade.

In high school, Hayden made Eagle Scout, played varsity football, was an accomplished classical pianist, starred in two theater productions, and took advanced classes. However, his lingering social delays, food and clothing sensitivities, and other idiosyncrasies made me wonder if I had been kidding myself all these years. Would Hayden really lead a normal life or am I denying reality again?

Saturday, May 19, 2018, Hayden will walk across the stage at Rensselaer Polytechnic Institute to accept his diploma. On Monday, he will pack a lunch with the food he likes, put on a shirt made of fabric that he finds tolerable, and drive off to start his new job as a software engineer at Raytheon Company.

That’s real. That’s the truth. And I’m happy to say, there’s no denying it.