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Sunday, April 25, 2004

Autistic child brings misunderstanding, small victories



By Linda Oda
Guest columnist

I recall with distinct clarity the first time my husband and I were told our son Donnie might be autistic. I remember thinking, "It's just like that Mary Tyler Moore movie - First You Cry." What I didn't realize in that split second was that was just the beginning trickle. He was19 months old and being tested for the first time in a speech therapy room at Children's Hospital in Dayton, Ohio. While the therapist asked my husband and I questions - "When did he sit up for the first time?" "What was his first word?" - Donnie wandered aimlessly around the room, ignoring toys and the people, before lying down on the floor and falling asleep. I rushed and picked him up. I wondered if the therapist thought I was a bad parent because my child preferred the cold floor to his mother's arms.

What followed over the next couple of years seemed like an endless parade of questionnaires, tests and evaluations. We had evaluations about our evaluations. Everyone was nice, but no one was extremely helpful. We didn't realize it at the time, but there is very little help for parents with children like Donnie. Now 7, my son is still considered nonverbal, although he has acquired some interest in speaking.

Donnie was diagnosed early - shortly after his second birthday - because his father and I knew something was wrong. It took three pediatrician changes before we found someone who agreed with us, so he could be tested. The first two doctors assured us that nothing was wrong, and all children are different. As parents, we knew better. He didn't wave "hi" or "bye" and didn't want to cuddle. My husband and I would lie in bed at night, wondering if we were killed in a car wreck, if Donnie would even notice we were gone. We physically held him down when he was 21/2 years old to teach him how to kiss. We went through the same procedure for hugs. All of us would be crying at the beginning, but forcing him to do things that seemed unnatural to him would be the only way he would get better.

You probably have seen autistic children at the grocery store or mall. They are the children throwing fits, while their parents are trying hard not to get frustrated. Many of you probably have given their parents dirty looks, like "can't you control your kid?" or even worse, "in my day, we used to spank kids who acted like that." From the time Donnie was 2 until just recently, the few attempts we have made to complete a family activity - as simple as going to the mall or to a fast-food restaurant for lunch - have been a disaster.

In his own world

Autistics like Donnie are completely self-centered, which means left to their own devices, they will please themselves and be happy. If Donnie could have a day to do whatever he wanted, whenever he wanted, he would be the happiest kid in the world.

The difference is very apparent when compared with typical children. Donnie has a sister who is 21 months older. Like most children, Samantha wants to please, and is excited when she completes a task or does well. She wants and deserves praise. She thrives on it. For Donnie, making anyone happy other than himself is a foreign thought. He's not doing anything to be bad or mean; it just never occurs to him that his actions affect anyone else.

My husband and I realized how outsiders really saw him a couple of years ago when we were in a large store. Donnie was too big for a stroller, and he kept lying down and crying as we tried to walk through the store. It was completely embarrassing. A kind employee - who had an autistic grandson - offered us the use of a wheelchair. As we wheeled Donnie from display to display, he made his happy, strange noises. People would smile at him, saying, "What a beautiful boy!" These were the same people who gave us dirty looks as Donnie lay on the floor, writhing and crying. Then we realized it - we had a handicapped child who people could not accept as handicapped because he didn't have the Down Syndrome eyes, or the cerebral palsy walk, or the obvious aids like a wheelchair or hearing aids.

A friend who has a Down Syndrome boy who is 3 recently asked me when will the crying stop. I told her I couldn't answer that because I haven't hit that plateau yet. I did tell her it does get easier and it does get better as our little guys get older. Both our families are lucky because we live in the Springboro Community School District. When we meet with our school principals and other administrators and teachers, they truly do work with us to give us the optimum education for our children.

Finally, palpable progress

Donnie could not have had a better first-grade year. He stood up in class two months ago and spelled his name. The teacher got tears in her eyes, and his classmates gave him an impromptu cheer. No one but Donnie knows whether he actually enjoyed the praise, but I think he does. He seeks our family members out now. Instead of preferring alone time, he will bring a book into our bedroom or want to sleep with Mom and Dad at night - something for the first 61/2 years of his life he would never consider doing. He and his sister, for the first time, began playing hide and seek recently. Laughing with others is becoming easier for him. While he loves school, he still hates to color or do rote tasks.

Autism has no cure. But as a family, we are learning better coping devices as Donnie gets older. Together, we are working as a family to get closer and closer to the "normal" range. We even sat for 15 minutes at a Wendy's recently, eating out on a Friday night like a "real" family, as my daughter would say. Could watching a movie in a theater be far behind?

The purpose for writing this is to send two messages. First, if you see a parent struggling with a child in public, rather than criticizing or giving them a nasty look, a kind smile or a quick "hang in there" can make a big difference. Second, for those with autistic children, I would encourage you to keep at it. You are the best advocate your child will ever have. If you succeed in nothing but making a better life for your child and family, you will have accomplished more than any CEO of a Fortune 500 company.

About autism

April is National Autism Awareness month. The autism spectrum is one of the fastest-growing birth defects, up more than 800 percent in the past 15 years. Studies have shown that autistic children tend to be born to parents who have above-average intelligence and are successful in their fields. Typically, siblings are either gifted in some area or are autistic as well.

For more information, go to the Web site of the Autism Society of America, www.autism-society.org.

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Linda Oda is a former Enquirer reporter. She and her husband, Don, live in Clearcreek Township in Warren County with their children Samantha, 8, and Donnie, 7.




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