My parenting adventure began with a diagnosis. When my son, Jackie, turned six, I found myself in a doctor’s office hearing words like autism, sensory processing disorder, and sensory integration disorder. In my gut, I knew the diagnosis was coming, but what I couldn’t know was what it meant for the future. I didn’t cry or pound my fist against the wall asking God, "Why?" I did what any mother would do and got on the internet, searching for any information that I could find about what made my son tick.
Back then, there weren’t too many resources talking about high-functioning autism. I had to wing it much of the time, parenting from pure intuition. The issues were easier to deal with when Jackie was small. We stayed away from places that would cause sensory overload. No candle shops or restaurants or loud parades. He was immature and had tantrums just like many other children his age, but as he got older, the gap between him and his peers widened, and he began to seem different.
The first time that I got “the look” was at the playground. Jackie was in elementary school and was big for his age. It didn’t help that strangers assumed that he was older than he was. He was playing alone, though there were several other children around. Suddenly a firetruck raced by, the siren blaring, and Jackie lost it. He ran frantically around the playground, hands covering his ears, trying desperately to get away from the awful sound. I couldn’t get to him fast enough and he ran into the sandbox and trampled other children’s sandcastle. The other mothers rushed in as I grabbed Jackie and took him to a bench, rubbing his back to soothe him. The small group in the sandbox looked at me expectantly, waiting for a scolding or at the very least a forced apology. They noticed me consoling my son and then there it was, the look that plainly said, "Spoiled child, bad mother." I did make my apologies, but I left that situation hurt and feeling misunderstood, feelings that I would spend the next 10 years harboring.
When Jackie entered middle school, the social issues of autism began to come in like a lion. There were constant instances of bullying, and of losing friends and not knowing how to make new ones. His lack of interest in anything outside of his passion for cars limited him. While his peers developed new interests, expanding out into the tech world, girls, and sports, Jackie remained where he always had been, focused on when the next batch of Hot Wheels cars would be released.
Jackie spent night after night crying himself to sleep and I felt so helpless, unable to get through to him about how our world worked. It was a foreign place to him. I began to follow him down that rabbit hole of depression. The constant judgement that we both felt, the inability to express ourselves to each other, and the knowledge that it would probably always be this way, left deep wounds. I began to think about how it all could've been different. How his life would've been so much better without this neurological difference. How my life would be more about me, rather than always about autism and waiting for the next crisis. Then something happened that changed everything.
Freshman year began with a bang. The transition into a much bigger school, filled with strangers and overwhelming course work, was horrible. Jackie's grades began to fall, and he began to feel that he might not be able to do well. We spent a lot of time with tutors and studying for big tests only to be rewarded with continuing low grades. His growing frustration filled me with despair. I questioned my faith in God, wondering why my son was given so many obstacles and how I would ever be able to make his life fulfilling in the face of autism. I felt like a failure and was consumed with worry for the future. I was at my lowest point, bitter and angry. I felt robbed of time and energy.
Then, one day, Jackie came home from school and said, “You know, Mom, I’m really happy that I have autism.”
He went on to tell me how he didn’t want to be like everyone else. Even though it was hard at times, he knew that it made him special and he never wanted it to go away. I was shocked, but there was also a sense of relief. I thought back over our lives together. All the times that I told him that he was special, that he could be happy to be who he was, had finally gotten through. My son was grateful for something that made him different, something out of his control that made him stand out.
This made me to think about who I had become. I began to revel in the struggles that I had faced. I realized that I was not the same woman that I had been. I was stronger and more aware of the world around me. I'd fought endless battles with school systems, insurance companies, and even strangers to help them understand the needs of my autistic boy. The battle hadn’t just been for Jackie, but for an understanding of all people who feel different in some way. I'd come from a place of misunderstanding others to arrive at a place that included us all.
I was grateful, for the first time, for all of it. Jackie helped me see that everyone struggles with issues in life. For us it will be autism. I am forever grateful for my boy, who trusted and believed enough to let me fight for him, and for helping me find a voice to help others.
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