Today we celebrated our son’s birthday. He’s a fine young man and we are really proud of him. In less than a month, he will graduate from college. We are optimistic that the path he chooses will be a good one, and that he will make a positive difference in our world.
Today, I’m not thinking about that day more than 20 years ago when he was born, two full weeks after the doctor’s predicted due date.
No, today I’m thinking about what happened exactly 20 years ago. In retrospect, that is a quite significant day in his life.
Why was that particular day so important?
Our son regressed in development at 18 months. One minute, my brother was taping our son in a high chair and he clearly said, “Hello, Uncle Andy.” Within weeks, there was no language at all. No Mama, Dada, nothing, only a videotaped reminder that he did speak in a full sentence, one time.
Were we imagining things?
But things weren’t right. We made an appointment with our family doctor, who recommended that we take our son to the local Easter Seals rehabilitation program for evaluation.
On our son’s second birthday, we visited our local Easter Seals for the first time.
On this day, 20 years ago, we loaded up a screaming toddler, my mother-in-law and my husband and I walked in to the center to see a group of specialists, including a world-famous neurologist from St. Louis Children’s Hospital who hosted clinics in our town.
After reviewing all the pre-testing, the expert told us that he thought our 2-year-old had autism. Our son didn’t help the situation by screaming bloody murder throughout the exam and report.
What we couldn’t know then was that the child was just really ticked off. He couldn’t express himself or understand language: It’s technically known as expressive and receptive aphasia. Stroke patients often get this.
We heard the “A” word for the first time. Autism. Twenty years ago there was not a lot of information available; it just wasn’t that common yet. Now the statistics are terrifying.
Are we better at identifying those at risk or are there more children who have this confusing syndrome?
Our son immediately started attending physical, occupational and speech therapy. At age 3. he entered a state-funded program for therapeutic pre-school. He was in special-education classes until second grade and was then mainstreamed into a classroom of typically developing students. He continued with speech therapy until fourth grade.
He did not have fullblown classical autism. At best, he has some traits of Asperger’s Syndrome.
But the investment of time in therapy hours and att-home exercises paid huge dividends in the long run.
By the fifth grade he was — by all accounts — a typically developing child with the same issues and challenges of any 11-yearold. That year he won both the school spelling bee and geography bee. An academic prowess and intellectual curiosity kicked in, just as with his cousins. Writing these words, it sometimes seems like a dream. When we got that uncertain diagnosis, we were devastated.
We didn’t know if he would improve or stay the same. He did not talk until right before age 4. He was potty-trained late.
We were afraid for his future.
Return to the day of his birth and fast-forward two days. We’re taking our son home from the hospital in a little red sweat suit with the name of our university on it. When he was born, we immediately started talking about college for him. We shared the dream that he would graduate from college.
When he was diagnosed with PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified) we did not know what the outcome would be. When he was 2, we didn’t know if he would ever live on his own or even go to typical school.
Yet, because of the caring, loving hands of his therapists and teachers, he progressed greatly. We were the lucky ones.
Many of his classmates in pre-school had feeding tubes or no language or other life-threatening or life-stealing permanent issues to deal with, and only tiny increments of improvement.
There were many children whose parents had abandoned them, and they were part of foster families. Or some children for whom the only decent care they received during the day was at therapy.
And some who not only had a disability but abject poverty at home.
Our horizons were broadened and we learned just how lucky our son is.
Today, our son is a typical Millennial.
Neither he nor we forget how he got there.
If you know someone who has a child with any symptoms of an autism spectrum disorder, get the child tested. Most parents know if something is not right with a child, but are simply too afraid to confront the truth. Early intervention can unlock potential you didn’t realize was there.
If you know of a parent who is too frightened about what issues a child may confront, feel free to share this with them.
Encourage them to contact a local agency or university.