Max responds to my coughs and sneezes which he hears from all the way downstairs in another room.
I continue to cough and blow my nose due to spring allergies.
Max becomes louder in his well wishes.
I cough and sneeze again. Big mistake.
“Mommy! Gesundheit!!! Say thank you!”
Although I utter, “Thank you” I am too late in my response for his liking. Max runs upstairs to make sure I say “thank you” and offers me tissues.
Max, the ultimate enforcer of politeness, follows the rules he has learned about social rules and interactions to the Nth degree. But the subtleties and nuances of such social interactions are a little harder for my son to comprehend.
You see Max has autism.
There was a time long ago when I knew nothing about autism. In high school I had seen a reference or two in books about children with autism and these children were usually described as mute, trapped within their bodies, or rocking to soothe their inner pain. Sometimes the word “autism” wasn’t even used but instead, “childhood schizophrenia” to describe this disorder which was clearly misunderstood.
Decades ago parents were told that their child diagnosed with autism would probably never speak, would never be independent, and would need to be institutionalized. It is hard to believe but some professionals still say these doom and gloom predictions to parents even now.
When my Max was diagnosed I was told similar stories. One speech therapist handed me a brochure for an autism farm where adults would live and work. My son was three years old. “Never too early to think of the future” she said cheerily. I was told by another professional that Max might never talk and that if he didn’t talk soon, his chances would greatly diminish as time passed. When Max was diagnosed I asked one of the testers what we could hope for Max’s future. She told me that she had heard about one young man with autism who had gone to his prom. I questioned whether going to the prom is the pinnacle of “success” for someone with autism or anyone else for that matter. A teacher who came to our home to instruct Max brought a peg board as one of her teaching tasks. When I asked her why she was giving him a peg board when she hadn’t even assessed his skills, she muttered that he was autistic so we start with a peg board.
So what is a parent to surmise from all this? My son is hopelessly delayed, will never talk, and we need to buy a lot of peg boards. We should plan his future living on a farm and hey, if we are really super lucky, he can aspire to go the prom someday.
Along with the gloom and doom predictions were the claims of miracles and cures. There were books about how a mother cured her son of autism by spending hours with him in the bathroom mimicking her child’s movements. There are books about diets and super supplements which can supposedly change your child’s biology and brain chemistry. There are methods and treatments which purport to eradicate or even defeat autism. For some, autism is a battle to be fought and won. The goal of such a battle is to have a child who is “indistinguishable from his or her neurologically typical peers.” Translation: I want my kid to appear or be as normal as possible. I question whether this is really something to aspire to. After all, who is this “normal” child we hold on a pedestal? Is there room for people who are a little or in some cases, a lot different than others?
Over the years I have come to my own personal conclusion that I do not wish to wage war against autism. I simply want to help my son. And I want to write about my experience in order to help other parents who are on a similar journey. I want to give back what was given to me.
My salvation going through this crazy-making process were the on-line autism communities made up of parents who understood what I was going through. When I was up until the wee hours of the night tearful and typing about a bad day, someone was always there to lend support and an empathic ear. When my son used the potty for the first time after years of training or I heard my son call me “mommy” following years of silence, I got to celebrate with people who understood the magnitude of such life changing events. It was this sharing and sense of community which kept me going during some very emotionally turbulent times. There is power in the personal experience and it was through this on-line venue where I found my voice.
I went on to write about my parenting experiences in parenting forums, newsgroups and blogs. This led to publication in newsletters such as The Best Practices Newsletter of the Interdisciplinary Council on Developmental and Learning Disorders. And in 2008 I wrote the first chapter of a book called "Embracing Autism” which reflects my belief that acceptance is key in this journey.
Prior to my son’s diagnosis I was no stranger to the world of autism. I have a Master’s degree in Special Education. I have worked in a variety of classrooms and educational settings with children and adults having multiple disabilities including those with an autism spectrum disorder. I was a special education instructor and therapist for over a decade before I made the decision to stay at home with my two sons who were babies at the time. Little did I know that all my education and training would come in handy for when my youngest received his autism diagnosis.
Although I have many years of experience in the field of autism I don’t claim to have all the answers. As more years pass I realize how much I still don’t know about this mysterious disorder. Although I have spent more than half my life now involved with autism in some respect, whether it was through my career or now in homeschooling my son, I realize that there are always new things to learn as well as new challenges to explore.
One experience I would like to share with you is what it is like to raise a teen who has autism. Currently there is a plethora of information, forums, and books geared for parents of younger children newly diagnosed with autism. But I find that once a child enters their teen years the information, resources, and support seem to plummet. We are here to help. Regardless of your child’s age, type of autism, or level of functioning, we want you to have a voice. We want you to feel at home here. Regardless of our situational or even philosophical differences we all share one thing in common. We love our kids and we want to help them the best way we can.
Someone recently said to me, “We are all in this autism boat together.” How true that is. I am extremely excited about this new venture and being a part of this creation. We welcome you stay for the journey.
You can also find Merely Me on these Health Central sites:
You read more about Max and me on our personal blog: The Autism Express