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Editorial - My Perfect Child
By Richard | March 20, 2007
Thanks to Steffany Lohn for giving an accurate and touching portrait of the discovery of a child with autism.
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My Perfect Child
By Steffany Lohn, of Brentwood, California | AutismLink
I knew from the beginning something wasn’t right, even if I couldn’t quite put my finger on it; No one ever imagines giving birth to anything less than a perfect child, but I just had a feeling, call it mother’s intuition, that something wasn’t right. It wasn’t until I picked up a magazine left by my mother in law on her previous visit and saw the one page article tucked away in the very back entitled “Warning Signs of Autism”, that my nagging suspicions finally began to take shape.
The pediatric community is loathe to pin a diagnosis of autism on any child under two years of age; my son Tyler was six months, so I followed the article’s advice and contacted my local regional center for an assessment. After what seemed like an agonizing wait, a case worker and an occupational therapist came to our home to evaluate Tyler. He was found to have some “developmental delays” and qualified for services, which consisted of a one hour home visit with the therapist every other week.
I had mixed feelings about the assessment. Although I w anted to be certain Tyler was receiving the proper help, “mild delays” didn’t sound nearly as life shattering as autism. As long as no one said that word and my son’s name in the same breath, I could hold out hope that my beautiful baby I’d dreamt of for so long would still be alright.
A year later, however, the signs were becoming increasingly more obvious. Tyler was still completely non-verbal; in fact, except for crying he barely ever made a sound. He did not respond to his name and rarely made eye contact. He walked on his toes and flapped his arms. His day was mired in routine, repeating the same sequence of tasks over and over again in exactly the same way, exactly the same order every time.
At 21 months of age, my husband, Paul and I took Tyler to a developmental pediatrician. We filled out mountains of paperwork while she asked a barrage of questions, then turned her a! ttention to our son. She interacted with Tyler for about an hour, then simply stated, in what seemed far too casual a way considering the news she was delivering, “Your son has autism.”
Even though I had been expecting it all along, to hear someone, to hear a doctor, finally say it drew all the breath out of my lungs. It was like an arrow directly into my heart. There was a rushing sound in my ears drowning out the doctor as she advised us on the next steps to take. All I could think as I looked at my son was what kind of life will he have now?
I stumbled out of the doctor’s office, blinking in the bright sun. I felt like someone had died and realized, in fact, someone had—the perfect child I’d always imagined was gone forever. All the hopes and dreams, the silly banter over whether he’d be a basketball player or a writer, nine months of pillow talk envisioning all the! amazing things our son would do, died in that instant. My husba nd and I were silent on the ride home.
Looking back on that day now, I know it was only my perceptions that died. I had been trying to write the story of my son’s life from such a narrow perspective. Nothing had really changed. Tyler was still the same child; I still loved him just as much, perhaps now even more. Life might become a little more challenging, but I had been given an opportunity to step outside myself and witness a bigger picture of the world at large.
Passing through the stages of grief pretty quickly, I found it helped to be pro-active, so I joined a support group and did a lot of research. Look up “autism” on the internet and the sheer volume of information popping up is truly overwhelming. The first thing you discover about autism is, the more you learn, the less you know.
The experts can’t even agree on the cause of autism, now citing the possibility of multiple tr! iggers: genetics, environmental, the controversial link between vaccines and mercury. I’m not interested in the politics of autism, however. What I care about is helping my child and improving the quality of our family’s lives, and the lives of those in similar situations whom I have met along this journey.
In a strange twist of fate, what I once viewed as a tragedy has found its way to something empowering. Watching my child’s life unfold and meeting others facing the same experiences, has led me to form a non-profit organization in Tyler’s honor, the Find a Way Foundation, dedicated to enhancing the lives of special needs children and their families. The foundation has some lofty goals, including building an interactive museum for children of all abilities, but foremost is teaching all of us to understand, accept and embrace diversity. As one little girl put it so succinctly, “Different isn’! ;t bad, it’s just different.”
Right after Tyle r’s diagnosis, I went through a period of worrying about everything he might never be able to do. Would he have friends, be able to live on his own, hold a job, go to school? I was so consumed by all the things he might never learn, I almost missed what he was actually teaching me.
Meanwhile, Tyler is making incredible progress. He attends an early intervention program at the Lynn Center in Pittsburg and I thank God every day for the staff there, making such an impact on Tyler’s development. He communicates with sign language and a picture exchange system, he is much more focused and aware of the world around him and his gross and fine motor skills are almost completely on track for his age. Most exciting of all, he responds to his name, looks me directly in the eyes and has a vocabulary of a dozen words.
We still have a long way to go, but I feel hopeful about Tyler’s future and what he will be able! to accomplish. Now when I look at my child, my heart swells with pride. I see a bright, beautiful, happy child, who at not even three years old has already inspired those around him to make a positive difference in the world. How perfect is that?
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