As a special needs mother, sometimes I become stressed or find myself at a loss for words. Sometimes my best outlet for stress management is through writing short stories (many non-fiction). This is my reality. Sometimes it’s difficult to share our stories; sometimes it’s hard to find the words.
I was at a loss for words yet again recently, when my child approached me with a particularly difficult question. I was awestruck at how much he’d taken in from his surroundings and others — perhaps it came with his therapy or maybe I just didn’t understand how intuitive he really is.
What I do know was that it was a question I wasn’t ready for at the time. This time, I approached it quite differently. We formed a creative short story, one we wrote together. The goal was to help him feel that we could approach our journey together optimistically and not to make him doubt himself when it came to others’ reactions to his meltdowns.
We wrote the following together:
“Mama, Does My Autism Make Me Bad?”
Every morning as Sage got ready for school, he asked his mama an important question to help him get through his day.
“Mama, does my autism make me bad?”
His mama, without skipping a beat, would reply, “Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”
Sage would smile as he went about his day. He would come home, and this is what he would say: ”Mama, I got time out. I got mad. I didn’t get recess or gym. I kicked…I screamed…I cried. I wanted to be good, but my teacher said I wasn’t. I tried, Mama, I really tried. Mama, does my autism make me bad?”
His mama just looked at Sage, took a deep breathe, then said, “Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”
It was bath time. Sage loved his bath time, but he didn’t like to wash his hair. He didn’t like the water over his head. He kicked and he screamed like he was in pain. It was sensory overload, and there was nothing to gain.
Finally, it was over and the aftermath of the meltdown somehow lingered in the air.
Sage had tears in his eyes as he looked at his mama combing his hair. “I get in trouble. People stare. I don’t know why…but I do care. I wish I was different. I wish I wasn’t bad. I wish school made me happy, but instead it makes me kind of sad. Mama, does my autism make me bad?”
Sage’s mama just looked at her son. “This is our journey,” she said. “We are not alone. Some children, like you, have autism too. You can’t see autism when you look at someone, so you can’t see who. It’s OK to be who you are…it’s OK to be different. Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”
Sage sat on his bed shortly before bedtime looking through this window. “Some people say I’m naughty, some say I’m spoiled, others say I’m bad. I don’t mean to get in trouble, I want to be good. I want to go to recess. I want to wash my hair. I wish I didn’t hear what they said about me. I wish I didn’t care, but I do, Mama. I do. Mama, does my autism make me bad?”
Sage’s mama sat next to his bed without taking her eyes off him, “Autism is not something that just goes away. It’s something makes you see and react to the world differently. It’s something we cannot control. Don’t worry about others; some just don’t understand. Just know, I will always be there to help guide you and hold your hand. Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”
Sage’s mama tucked him in bed and shut out the light. She stood at the door gazed at him through a small crack of light. Through the darkness, she saw the glimmer of a smile.
“Now close your eyes, rest your head. Autism does not make you bad; it makes you special instead.”
It is now his favorite bedtime story.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.