Mary Elizabeth’s Story
“Our personal journey into this world of autism began just over eight years ago with the birth of our son, Perry. Since the beginning, he struggled immensely. The first thing we noticed was that he seemed very restless. He was always unsettled. He had a lack of recognition in his eye. He didn’t eat. He didn’t sleep. As each day passed, we recognized more ‘red flag’ characteristics of autism with repetitive behaviors, speech/sound delays and more.
“I put Perry’s name on the waiting list of every developmental pediatrician in and around Atlanta. I was told there would be a minimum 6 month wait time. Meanwhile, at 12 months of age, he was found to be eligible for the Babies Can’t Wait program (Georgia’s early intervention system) due to his developmental delays and he began a steady course of daily therapies. When Perry was 15 months old, we finally got an appointment with a Developmental Pediatrician. The doctor confirmed what I already knew: Perry has autism.
“I cried all the way home. I cried for 2 days, hoping and praying that I would be able to provide this child everything he needed. My research recommended 40 hours of ABA (applied behavior analysis) therapy, which insurance would not cover. I also found thousands of pages of different treatment approaches, all of which claimed to be effective in treating autism. I could not afford to make the wrong choice. My son’s future depended on it.
“In addition, I was 7 months pregnant with our daughter. Margeaux was born blue and immediately faced feeding and sleeping problems of her own. Margeaux’s health struggles continued, one after the other. She was also restless, but in a different way than Perry had been. When Margeaux was 12 months old, we found ourselves undergoing our second Babies Can’t Wait (Georgia’s early intervention system) evaluation. Margeaux’s therapy began and Perry’s therapy continued. Now there were two therapy schedules to juggle. Her ‘official’ Asperger’s diagnosis came at age 5. It was a long road.
“While typical children are scheduling play dates and extracurricular activities, our children’s lives are about therapies, day after day, year after year, usually 7 days a week. People on the outside cannot grasp the necessary skills that our children require help with.
“My incredibly special children have been a true gift. Of course, like any mother, I would take away their struggles if I could. I strive every day to be the kind of parent they deserve. I hope I am as much a gift to them as they are to me. They are a bright spark in so many lives.
My ultimate hope is that one day soon my children will live in a world where they will be accepted and appreciated, despite their differences. As long as I am here, I try to surround them with people who love and accept them as they navigate this world, because autism never takes a day off.”
Apart from the medical care and therapies that you may line up to help your son or daughter, there are simple, everyday things that make a difference.
Focus on the positive. Just like anyone else, children with autism spectrum disorder often respond well to positive reinforcement. That means when you praise them for the behaviors they’re doing well, it will make them (and you) feel good.
Be specific, so that they know exactly what you liked about their behavior. Find ways to reward them, either with extra playtime or a small prize like a sticker.
Also, as you would with anyone — on the spectrum or not — prize your child for who he or she is. As a parent, loving your child for who they are is key.