April 5, 2012

Why Early intervention is Important

Today is our son’s birthday. He’s a fine young man and we are really proud of him. In 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 struggling world.
He already has.
Today I’m not thinking about that day more than twenty 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 twenty years ago today. In retrospect, that is a quite significant day in his life.
Why was that particular day so important? After noticing developmental delays in our son, his extreme contrast with his three male cousins about the same age, that day we went into our local Easter Seals for the first time.

Our son regressed in development at eighteen months. One minute my brother was taping our son in a high chair in their Iowa kitchen, and the baby 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? He had a wry neck (torticollis) and needed physical therapy to hold up that melon-sized head. We weren’t too worried. My husband's family is known for their large heads, and in that family is filled with very smart people with large heads.
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 this day, twenty 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 two-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, what is technically known as expressive and receptive aphasia. Stroke patients often get this.
We heard the “A” word for the first time.
Autism. Just writing it down now scares me. Twenty years ago there was no autismspeaks; it just wasn’t that common yet. Now the statistics are terrifying. Are we better are 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 three 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 full-blown classical autism. At best, he has some traits of Asperger’s Syndrome. He also has Tourette's Syndrome and something called Benign Essential Tremor.
But the investment of time in therapy hours and at 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 eleven-year-old. That year he won both the school spelling bee and geography bee. His academic prowess and intellectual curiosity kicked in, just like the other big-headed boys in the family.
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 four. He was potty-trained late. We were afraid for his future.
Return twenty-two years and then fast forward two days. We’re taking him home from the hospital in a little 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 go to a better school than we did. I’m not demeaning our college; it was a wonderful place for us and we’re grateful. But we wanted our son to have more.
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 two, 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 them tested. Most parents know if something is not right with a child, but are simply to 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 their local Easter Seal society or appropriate agency or medical professional.