A New Reality Unfolds
Autism is a diagnosis that is given with a bleak prognosis. For most parents it is given as a life sentence with no medical treatment or protocols. Welcome to the world of Autism! But this is not a sad story. This is a story of hope; this is a story of love and courage. This is the story of a family that took a chance and did things differently. We believed that healing the body would give us the best chance to heal the mind. This is our story of recovery.
“On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD).” – Autism Speaks
When I was 9 years old I made my first and only friend with Autism. His name was Arthur, a 14-year-old boy that came to visit our school and stayed for a short while. He was tall and slender. My seat was next to his. His movements were uncoordinated and cumbersome. Arthur was non-verbal although he could make sounds. But we were friends in my world. He had a beautiful smile and some of my classmates would tease me saying he was my boyfriend. One day he was gone. I never saw him again. Back then meeting such a child seemed rare. Many years later, when I was in college, I overheard a friend talking about another friend’s child with Autism. She said she never wished that on anyone. Those two instances painted my picture of Autism.
During my pregnancy I heard of the word Autism a few times but still didn’t really know what it was. Today mainstream medicine considers it a mental illness. Our child psychologist, at the time of our diagnosis, called it “Regressive Autism”. She explained that a child was born completely normal, hitting a lot of their milestones and all of the sudden they regress into Autism. I think she used the words “like Alzheimer’s”. That was her way of explaining how our son became Autistic. He was born a normal and happy baby. His first word was “Elephant” at 6 months; he sat by 7, crawled by 9 and walked by 13 months. By that time he had about 10 words. And then slowly he retracted into his own little world. The words were no longer there and his eyes were no longer bright.
When he was 18 months we took a trip overseas to visit family and friends. On a visit to one of my friends, I met a little boy the same age as my son. I was amazed at how engaged he was with the adults around him. While my son spent most of the time looking out the window, this boy was very aware of what we were saying, looking at everyone and laughing. His mother kept describing how well he ate and how well they played together. I had this eerie feeling in my gut. Like I was there for a reason; to see that mother and that child together. I’d had a feeling something was not right for a little while. The skills he had lost, the words that were no longer there, the constant spinning, his fascination for flipping wheels on a car and pages on a magazine over and over… But our pediatrician kept assuring me he was right on target and not to worry because kids develop differently.
One day, my mother in law came to my husband and asked that we didn’t get upset but she thought our son had a hearing problem. She took him to the park and a dog was barking right behind him and he didn’t even flinch, she said. It seemed like he didn’t hear it at all. I had that same experience with him. I could call his name several times and it was like I wasn’t even in the room. He also had developed this strange tendency of walking around looking out the corner of his eyes like there was something there. So, our doctor suggested a hearing test and a vision test. All tests results were normal, but by that time I was hoping they weren’t. I needed something that could explain the odd behavior we were experiencing. By 24 months there was still no talking and no sign that my son understood anything anybody said. The only way to get his attention was by singing. Boy, he could sing the words of a song but he couldn’t talk. That was so strange to me. But the toughest thing for me was that I never knew when he was hungry or thirsty. Or when he cried, I didn’t know what was wrong. He would reject food like the plague, only eating two things; yogurt and goldfish crackers.
On our own, we decided to get a developmental evaluation by Missouri First Steps. The results were shocking. Our child was functioning at a 3-month-old level in some of the categories. We took the results to our pediatrician who simply told us not to worry about the results. I have to laugh about this today. The evaluator was trying to help us get some services in order to help our son and we were upset with her for the results of her report. Bless that evaluator, right? We were totally clueless. We were in the domain of things we didn’t know we didn’t know. Mommy’s intuition kicked in, thank God! One night searching for “24 month non-verbal child” I came across the word “Autism”. There was even a quiz you could take and I pretty much check marked every symptom. Needless to say I didn’t sleep that night. My father is my rock so he was the first person I told about that quiz. Then I told my husband. The waiting list to get an evaluation for an autism diagnosis those days was miles long. It’s probably worse today, but our amazing Missouri First Steps case manager got us an evaluation very quickly.
On January 27th , 2011 our son was diagnosed on the moderate to severe range of the Autism Spectrum. I already knew it but couldn’t stop the tears. I had read enough about it by then and already had a plan in place. We were going to recover our son, even though he didn’t talk, he didn’t look or play with us, he didn’t eat, he didn’t say the word “mommy” and he couldn’t sit still for 2 seconds. He couldn’t hear anyone, not even me. He was lost in his own world. But from the beginning I believed this was not going to be a life sentence for him. And so the miracle began.
To read part 2 click here!