92: Two Worlds

92: Two Worlds

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Two Worlds

Happiness is an attitude. We either make ourselves miserable or happy or strong. The amount of work is the same.

~Francesca Reigler

Halloween. An exciting night for parents and children alike. Little ones dressed up as their favorite characters. Plastic pumpkins in hand ready to fill with treats. Spider webs, jack-o-lanterns, the scent of fall wafting through the air. And if you’re my four-year-old son Joshua living with autism, a bottle of laundry detergent.

It was October 31st, the first year Joshua and his two-year-old sister, Shiloh, would get the chance to trick-or-treat together. I dressed Joshua up as a pirate and Shiloh as a cupcake. How cute they looked! I envisioned them skipping through the neighborhood, excitedly collecting goodies. So with pumpkins and camera in hand, we set off with a few family members and a friend.

The first house we went to had a dog that barked. Shiloh wasn’t fazed at all. “Trick or treat!” she shouted, grabbing her candy and running off to the next house. Immediately I turned to Joshua. Panic mode had set in. Already nervous about this new and unusual adventure, he had covered his ears to muffle the sound of the barking dog. And he cried. And cried and cried. Sensory disorders are the most difficult differences to bear for the child living with autism and the most heartbreaking to see as a parent. My mom held Joshua tightly and tried to console him. I was doing my best to balance between my boy who needed my full attention and Shiloh who was excitedly running from house to house, grinning from ear to ear.

“Look Mommy, I got candy!”

“I know, baby. Good job!”

I desperately wanted to include Joshua. Despite trying to redirect him and show him what to do, nothing worked. He was experiencing total sensory overload.

We had chosen to go trick-or-treating in my good friend Rose’s neighborhood. Rose has loved my son for many years and knows him well. I knew it was time to give in and bring Joshua to her house. There, he would be able to calm down and regroup and Shiloh would have my complete attention. As Rose took my sweet boy from my arms I could feel my heart break. I wanted him with me. I no longer cared if he went up to the houses; I just wanted him to be with the family. I didn’t want to let him go. Rose looked at me the way she has done many times before. “Aspen,” she said, “he’s okay. He’s going to be fine. It’s going to be okay.” I turned away from Joshua and walked towards my mom, who was holding back tears. I knew exactly how she was feeling. Those are the times when autism is hard. Really hard.

Later, Rose sent me a photo of Joshua eating a piece of candy while sitting on her washing machine. (Joshua has been fascinated by washing machines since he was eighteen months old.) He was calm and relaxed. At some point she decided to take him out and teach him how to trick or treat. She promised him they’d stay away from any home that had a dog. My heart broke when I saw the picture she texted me. There he was, just three feet tall, in his brown pirate pants that cupped the top of his sneakers to look like boots, his raggedy pirate shirt tucked under his black vest. The wig was gone (he didn’t like it). His big green eyes and soft brown hair angled up towards the camera. And in his right hand was a giant, bright green bottle of laundry detergent. He was happy.

Joshua’s first sentence as a toddler was, “I want the soap.” At the time it was a bottle of children’s shampoo. I praised him. Little did I know soap bottles would be among the objects that made him mysteriously happy for years to come. And now here he was, learning how to trick or treat, avoiding any homes with dogs or bright Halloween decorations or crowds of children in strange clothing, holding a bottle of detergent because it helped him feel safe. I cried, and smiled. I felt sad, and proud. My heart was grieving, but at the same time, relieved.

Eventually I met Rose and Joshua somewhere in the neighborhood and saw how he had learned the process . . . knock on the door, say “trick or treat,” get a piece of candy and say “thank you.” He did it so well! And it was something that was very hard for him to do. If holding that bright green bottle of detergent made him feel safe and happy, then I was happy too.

At some point during the evening Rose had called my husband, Ryan, and told him what a difficult night it was for me. I was bathing the kids later that evening when he came around the corner of the bathroom, gave me a look as if to say “I understand” and tightly wrapped his arms around me. Sometimes words aren’t necessary.

Autism has taught me selflessness. It isn’t about me and how my kids look or behave. It isn’t about costumes or activities or even about gifts on Christmas morning — Joshua doesn’t care about them. It’s not about my agenda. With Joshua it’s about trying to understand his world . . . seeing things from his perspective, hearing things the way he might hear them, tweaking my plans and adjusting my schedule to make life doable and fun for my boy. It’s about time and love.

This year I gave up. I will never again dress up Joshua on Halloween unless he decides it’s something he wants to do. I won’t push traditional Christmas morning activities. On Easter we won’t hunt for eggs — he doesn’t care about eggs. I only want what every mother wants for her kids, but Joshua’s different. And really, in the grand scheme of things . . . what will it matter? At times I have grieved over our differences and yet at other times I’ve celebrated them! I love the fact that Joshua notices detail. I love that he loves people and remembers their names and the memories he’s made with them. I love his sweet smile and his quirky comments that make me laugh. I love that everything is literal with Joshua. It’s black or it’s white. He is straight to the point and he always tells the truth. I love my son. And true love is being willing to do whatever it takes to enter into another’s world. It’s unconditional love.

I believe that one day my boy will be able to tell me what it’s like to live with autism, and I’ll be able to tell him what it’s like to be “neurotypical.” And there at my kitchen table, with the sun setting behind the window and cups of coffee in our hands, we’ll share our two worlds, and the dog that barked on Halloween won’t be a blip on my radar (or his). Maybe we’ll even share a bowl of candy corn. Yes . . . I think we will.

~Aspen Teresa Nolette

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