The people, places and experiences that have formed the puzzle pieces of my life
Living in a World called Autism
January 18, 2015
[Excerpt from my article published in Metanoia Magazine, Canada in 2009 entitled, "The Possible Dream"]
One of the most devastating days of my life was when my then four-year-old son, John Matthew, was diagnosed with autism. I had taken him to a neurologist to be examined for a febrile seizure disorder, and ended up walking out of the office with totally unexpected news – my son had autism. Being a first-time mom, I didn’t have any other children with whom to compare my son’s developmental stages or sometimes odd behaviors. I didn’t realize that most children wouldn’t run screaming out of the bathroom because they couldn’t cope with the loudness of the running bath water. I always assumed that his being content to remain on my lap in the doctor’s waiting room was enviable perfect behavior. And, lastly, I always just assumed he was extremely shy when he wouldn’t look at and greet other people. I later learned, it was his way of dealing with major anxiety from being in social situations.
Finding out my child had a lifelong disability was somewhat surreal. I actually experienced the stages of a grieving process for the “death” of my perfect child. I went through a “panic” period when I researched endlessly for answers, an “angry” period where I cried a lot and asked “why us? “, an “action” period busily investigating methods to treat the disorder, and finally followed by an “acceptance” period when I came to terms with the kind of future I believed we would be facing.
The months that followed John Matthew’s initial diagnosis were filled with constant heartbreak as I watched my sweet little boy with the infectious smile and big heart struggle to make friends on the playground at school. I also found myself becoming increasingly fearful as I envisioned his lonely, isolated future because of the severe social deficits that are characteristic of people on the autism spectrum. As a parent, I naturally just wanted to fix everything. If he couldn’t’ read well or write neatly, I knew I would be able to find assistance through various therapists. But with autism…his brain was wired differently. And, how could I fix something like that?
Through most of my life, if I felt out of control in a situation, I was always able to eventually devise a plan to remedy it. However, as I continued to uncover the many layers of John Matthew’s disability, I found myself feeling totally helpless, and vacillated daily between being overwhelmed with the concept of autism or obsessed to the point of exhaustion in trying to discover a magic pill or therapy that would cure him.
There is a saying, “When God closes a door, somewhere He opens a window.” At first, it might be hard to see beyond the closed door, because it may have been the way we had intended to go. However, if we can take a step back and allow ourselves to be open to other possibilities, we will be able to see the light coming through the window. And, that light will lead us on a journey down a path we could have never previously imagined traveling. For me, it was the beginning of a journey in the autism world.
“…and through the dark of the night she saw a faint glimmer of light that grew brighter with every step. ‘If I go faster,’ she thought, ‘I’ll reach the light sooner.’ She began to run. In her haste, she stumbled on some rocks and fell. She lost sight of the glimmering light. And, she laid there in her darkness, feeling discouraged, angry, helpless and sad. Then from the depths of the darkness there came a positive energy which wrapped around her like a warm blanket, lifted her up and placed her back onto the path. Once again, she began to take one step at a time, this time carefully placing one foot in front of the other. And, once again, she could see the faint glimmer of light. She now knew that it was going to be a road filled with obstacles, and that she would probably stumble along the way. But she also knew she was not alone in her journey.” (Author Unknown)
It wasn’t until John Matthew’s diagnosis of autism that I was able to realize my true passion in life as an advocate for families in the autism community. Because of my own experiences with my son and the affect it had on my family, another parent and I started a support group in Las Vegas for families and educators of children with Asperger’s Syndrome and High Functioning Autism. Seven years ago, we began holding support group meetings for approximately 15 families. Our support group now provides information and counseling to almost 400 members. Because I am still “walking the autism walk,” I am also one of those family members who need constant support from others. My involvement in a support group is a reminder that autism affects the entire family and, most importantly, that we are not alone in this life-long journey.
I have also found that being the parent of a child with autism can lead to strong character building. You must 1) educate yourself in order to better understand, accept and advocate for your child’s disability and abilities,
2) develop much endurance and patience to effectively deal with the 24 hours a day/7 days a week rollercoaster ride of constantly changing food obsessions, sensory issues, emotional outbursts, and endless doctor and therapy visits, and 3) tolerate the rude stares and comments from “autism-awareness-challenged” people with whom you and your child will occasionally come into contact. Then, just when you think you’ve seen and handled it all, you have to fight for your child’s educational needs.
Over the years, there have been many times when I wondered if I was expecting too much from John Matthew’s teachers. They just didn’t seem to understand autism. When John Matthew was six years old, I asked his teacher if she would encourage the other children to initiate playing with him, and vice versa. She told me that some children play with each other on the playground and some kids play by themselves – just like John Matthew. Why couldn’t she see that when the other children played by themselves, it was because they CHOSE to play by themselves and didn’t feel like playing with anyone at that moment. When John Matthew played by himself (and sang and talked to a jump rope), it was because he DIDN’T KNOW HOW to play with someone else. Singing and talking to a jump rope replaced having friends. I’ve come to realize that I wasn’t the only parent to experience this unfortunate lack of autism knowledge from the very teachers with whom we were entrusting our children.
While I’m on the subject of schools… one of the hardest, mentally exhausting experiences that most parents have with the public school system is attending IEP (Individualized Education Plan) meetings. These meetings are designed to put into place a very long, detailed individualized education plan full of supposedly measurable goals -- and which for the most part are very rarely followed by the school in their entirety. Seriously, who was going to stand by my son to see if “8 out of 10 times” he would greet someone appropriately? In reviewing my old journal, I came across the following entry when John Matthew was six years old. It summarizes my feelings about IEPs. “The weather on the day of one of John Matthew’s IEP meetings was cold, rainy and on the gloomy side. With the lack of sleep and stress in preparing for the meeting, my mood paralleled the weather. Before heading off to school, I stuffed my briefcase full of paperwork, and, I guess I was looking fairly serious. As I turned to head out the door, I heard my sweet little boy singing at the top of his lungs a Barney song that made me smile and walk over to him and give him a big hug and kiss. These are the words to the song he was singing that morning: ‘It’s a great day, a beautiful day. The kind of day that makes me want to say: I’m glad that I’m alive, I’m happy to be me, and that’s the way it should be’.” It is times like this that inspire me to continue fighting even harder and researching more intensely for ways to make his life as happy and meaningful as possible.
There is another saying that “necessity is the mother of all invention.” That is how my idea was born to create a private school specifically designed to meet the needs of children with Asperger’s Syndrome and High Functioning Autism. It was after experiencing too many years watching John Matthew struggle and fail academically and socially in traditional schools and hearing similar stories from families in my autism support group, that I knew it was vital to create an educational environment that would benefit my son and other children with similar disabilities. I could no longer stand (frustratingly) by and accept the status quo. My son’s future depended on it. These wonderful children have such potential, if only they are in the right environment.
In May 2007, I joined with other parents and local autism professionals who had shared a similar vision, and created a private, non-profit school located in Henderson, Nevada called “The Achievement Academy.”
The Achievement Academy is designed to address the complex educational needs and social skills deficits that are characteristic of children with Asperger’s Syndrome and High Functioning Autism by offering research-based academic programs, with an emphasis on teaching social skills and life skills development. The children we serve at The Achievement Academy dream of making friends, fitting in, and attending a school where they are truly accepted and not just tolerated…. a school that recognizes, values and supports their unique qualities. Our parents dream of seeing their children being happy and becoming contributing members of society.
As the founder of The Achievement Academy, I dream of a school that enables my son and other children with autism to be able to reach their full potential, both socially and academically. With much gratitude for the very hard work by the people who have supported the creation of this specialized environment, my possible dream has become a wonderful reality.
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UPDATE: The Achievement Academy made history in Southern Nevada as the first private, nonprofit school for children with high functioning autism. It excitedly opened its doors in 2009 and soon enrolled over 20 children. Unfortunately, the struggling economy affected the small school and, after four wonderful years, the Achievement Academy closed its doors. During this short time, the school was able to positively change the course of its students' lives and provide them with the skills they needed to continue their education in less structured environments.
Recently turning nineteen years old, John Matthew has grown up to be a handsome, kind-hearted, and creative young man who works so hard at things we just take for granted, and who takes such joy in things we sometimes overlook. Being a constant reminder of what is precious in life, he has shown me the special joys of what having a child with autism can bring to a family.