Apr 042017
 

April 4, 2017 — Today is our son’s 27th birthday. What richness Alex has brought to our lives! He is a wonderful person, full of laughter and intelligence and compassion and love.

As we celebrate his birthday, I’m also reminded of another anniversary.

  • Twenty-five years ago today, we took our son to the Easter Seals Rehabilitation Center for the first time.
  • Twenty-five years ago today, we heard the word autism for the first time.
  • Twenty-five years ago today, our lives — and his — changed forever.

A much-wanted baby, he took his sweet time, showing up nearly two weeks late. His infancy typically processed until eighteen months.

We visited my brother and his family in Iowa. Our nephew, three months younger, was running circles around our boy. Our nephew came early and weighed four-and-a-half-pounds, but at 15 months was stronger, faster, and even said a few words.

While it is never a good idea to compare cousins or siblings, seeing the boys together punched us in the gut. Our nephew nearly solved equations, compared to our son. Alex, the larger of the two, was awkward and had no cogent vocabulary.

Jerome

Sitting in a high chair during our visit, he looked at my brother’s video camera and said what sounded like, “Hello, Uncle Andy.” That was the last thing we understood him to say until several years later.

That trip woke us up. We noticed Alex loved ceiling fans and watched for minutes at a time. He was highly impatience if he lost a particular toy, his precious Toddle Tots. We named all of them. He had more than one “Jerome,” which he clung to so tightly he rubbed their eyes off. He drank only from his red sippy cup with a particular lid. His eye contact was poor, and while he interacted with others at daycare, his play patterns were unusual. (Later in his pre-school days, a teacher told me he liked to have “meetings.”  She thought this was odd. I thought it was normal for the only child of two parents with lots of meetings.)

I consulted our family doctor who told me I was “a nervous mother and I should get over it.” Over the next few months, our son’s behavior and actions differed from the other children we knew.

After several similar visits with our family doctor, I had had it. I sought a female physician (whom I still see). On our first visit, she suggested we have our son evaluated for developmental issues.

On April 4, 1992, we walked into the Easter Seals Rehabilitation Center for a lengthy evaluation. Alex was screened by a visiting neurologist from St. Louis Children’s Hospital (whom he would see several more times) and physical, occupational, and speech therapists. The specialists felt he had PDD-NOS, Pervasive Developmental Disorder, Not Otherwise Specified. In 1992, the word “spectrum” had not come into use.

All we heard was the “A” word, autism, about which we knew nothing. We left the Rehab Center with more questions than answers. Would he ever talk? Did he understand the language? Would he always live with us? What was his ability to learn?

The Rehab Center recommended weekly therapies, and within a year, he also started their therapeutic pre-school. He improved, slowly.

At the Rehab Center, all three of us learned more than Alex’s therapies taught. Our son was by far the least impaired person in his classes.  Many children had severe physical defects, used wheelchairs, and lacked support at home. I am certain Alex’s empathy as an adult derives from learning about others with differing abilities and backgrounds as a small child.

Language came fully along by age four. The child who screamed for his sippy cup now read everything to us, from words on television to signs at Sam’s Club. Many of his behavioral issues may have been caused by his frustration. We believe he fully understood language and read very early, but his inability to communicate made him furious.

At his pre-school graduation in 1995, he spoke to the crowd. “My name is Alexander Abbott, and I’m going to kindergarten at Chandler Elementary School.” His vocabulary was well ahead of his years, yet his ability to speak was still halting and stilted. He stayed in special education until second grade, also receiving an IEP for speech until fourth grade.

His challenges were more social after early elementary school, and those are his stories to tell. We are grateful he had friends from Scouting, who sometimes pulled him out of a bully’s harm. I neither want to maximize or minimize his issues.  Likely, he has Asperger Syndrome, with its bundle of impaired social skills and understanding.

Today he is a college graduate working and living in Washington D.C. His life is rich with friends and activities, kayaking and hiking on weekends, enjoying baseball and board games and nights out with pals. Early intervention from the Rehab Center gave him a self-awareness most neurotypical people lack. He knows his limitations and works through them, which is more than most people do. Unless you know him well, you likely won’t know he is on the spectrum.

On my desk, I have his last Jerome, a late model with eyes intact. I keep it there as a reminder of how fortunate Alex was to have dozens of teachers, therapists, and mentors who care about him.

Happy birthday, son. We love you, as the song says, just the way you are.