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Now he holds my hand

Nine years ago on a sunny, winter day, my son Tyler was born. He was lifted out of my womb through Caesarean section and had none of the head dents or scratches that some babies come out with. He was perfect.

Tyler was a wonderfully easy baby. At five weeks, he slept through the night. He loved to eat and never had to be prodded to try a new food. Content, he smiled often and fussed little, and I was able to take him to board meetings, art gallery openings, nice restaurants and playgroups without worry. My friends often commented how lucky I was to have such a happy baby.

My husband and I spent the first two years of his life blissfully adoring our long-awaited baby boy and boasting to each other (and anyone else who would listen) how bright he was, how artistic, how adorable. We talked late into the night about his promising future, debating which Ivy League college we wanted him to go to and what he would grow up to be — a painter like his grandmother, an actor like his mom, a scientist like his uncle or a financial expert like his dad and granddad.

When Tyler turned 2 1/2, his easygoing demeanor and behavior began deteriorating rapidly. My once sweet child became filled with rage and would have terrible temper tantrums on a daily basis. I remember calling my mother and telling her that the "terrible twos" had struck with a vengeance. Compounding the issue, Tyler was not speaking. But Tyler had walked unassisted at 7 months and my pediatrician assured me that babies who walk early often take longer to talk. Tyler was my first child, and I figured this nasty stage would pass.

It didn't.

When I took him to preschool, all hell broke loose. The tantrums, tears, aggression and a complete lack of interest in the other kids occurred on a daily basis. I had him tested, to get a professional opinion. He was given the tag "developmentally delayed," and we were told to begin speech and occupational therapy immediately.

Through the next year, our concerns multiplied. Therapy wasn't helping much, so we took him to more specialists for more testing. It was then that our greatest fear was confirmed: Tyler was autistic.

The news was devastating. Autistic? My brain kept trying to assure me that Tyler was going to Harvard and then becoming a movie star or brain surgeon or the next Bill Gates. I was in heavy denial, even though many of the signs had been right in front of me. For example, Tyler had a lot of sensory integration issues, such as terribly sensitive palms, so sensitive that he couldn't bear holding my hand, so I held his wrist instead. Tyler didn't want to interact with other children, hated his routine being broken, and didn't speak or make eye contact when his name was called.

After the diagnosis, my husband and I went through the stages of grief, from shock to anger to intense sadness to finally a steely resolve to "fix" the problem. I researched autism and took on learning about the disease as a full-time job. I found conflicting reports on the causes and treatments. With autism, a sure plan of action doesn't exist. The disease affects every person differently, so each child's treatment must be customized, often resulting in a hit-or-miss plan — with your child's life abilities at stake.

Every day that passed, my son seemed to slip farther away. He's drowning, I thought, and I have to find a lifeline to throw to him. As I continued to immerse myself in autism, I found there was only one opinion that was universal: Early intervention is critical. It could make the difference in an autistic child being able to lead an independent life as an adult.

Therapy, which we were already doing, was the first step, but not all therapy and therapists are created equal. We saw several different therapists until we found language, occupational and behavioral therapists who worked well with him and started making a difference.

In addition to therapy, Tyler's school environment was critical. We looked at many schools, both public and private, trying to find one that was the right fit. After enrolling Tyler in three different schools with disastrous experiences, we hit the jackpot at New Heights Elementary, a public school in St. Petersburg.

There we found teachers whose goal was like ours: to help Tyler mainstream into a regular classroom and not just "warehouse" him for the day. They responded positively to our suggestions and were willing to do whatever was necessary to help him. At last, we had found educators we could partner with as a team.

Five language therapists, three occupational therapists, two behavioral therapists, a neurologist, a developmental specialist, three schools, tens of thousands of dollars and seven years later, Tyler has emerged. Today he is mainstreamed into second grade, where he makes consistent A's in math and art. He has an aide and kind classmates who guide him when he needs help, but he is making great strides at achieving independence.

He has friends at school and even one special little girl, whose hand he likes to hold when he walks her to her mom's car. Although he speaks, he still struggles with language. But he is able to say full sentences and communicate. I like to think of Tyler as a beautiful work in progress.

My hopes and dreams for Tyler are back. They may no longer include Harvard and being a brain surgeon, but they do include college, a job, a spouse who loves him for who he is and happiness. And in wanting that, my dreams for him are just like that of any other parent of any other child, autistic or not.

Diana Whittle lives in St. Petersburg and is director of communications and marketing at Shorecrest Preparatory School.

Now he holds my hand 07/28/09 [Last modified: Wednesday, July 29, 2009 1:59pm]
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