From the time Caleb was two-years old he has kept my world interesting by emulating his favorite super hero every single day of his life. In fact, for three years STRAIGHT, Caleb wore nothing but a cheaply constructed Spider-Man super hero costume that, after daily wear and tear, was missing both knees and elbows.
For years, my youngest son Caleb would be seen around our home town posing as his favorite super hero. We were quite the spectacle at the supermarket, shopping malls, and therapy and doctor’s offices. Even while I was in front of prospective donors and sponsors advocating for their support to help The ISAAC Foundation (a local autism organization in our home town), Caleb was by my side rocking his super suit, beaming ear to ear.
While my daughter still enjoys sharing her exuberant sense of style with the world and revels in dressing “herself” every chance she gets, Caleb has decided that being unique is something he wants to avoid and chooses to no longer wear his super suit in public. Quite simply, Caleb just wants to fit in.
Last year I was contacted by Caleb’s teacher asking how I felt about the school showing a video to each classroom about autism. They assured me that Caleb would not specifically be pointed out to his peers, but the staff felt it would help the neuro-typical students have a better understanding of what autism is and how it affects some of their classmates. I was thrilled at their willingness to go through the effort of educating the student body and yet the realization hit that Caleb didn’t actually know that he was affected by autism. Let’s be clear. It wasn’t something that I intentionally hid from him. Rather, I was waiting for the time when Caleb would have the appropriate level of understanding that autism was part of what made him so wonderfully unique.
That day finally arrived on a hot summer day in early August. Instead of searching for his shoes so we could leave for his therapy appointment, he stood staring at me with a puzzled look on his face. “Mom, doesn’t ISAAC Foundation give therapy to kids with autism?” Happy that he understood what I did for a living, I said, “YES! We help kids with autism get therapy so they can be the best they can be!” Unsatisfied with my response, he said, “I go to therapy. Does that mean I have autism too?” Do I have autism like my brother Isaac?”
While this was the opportunity I had been waiting for, I suddenly found myself speechless for words. How do I explain to a seven-year-old how autism affects him? Then it came to me. “Yes, Caleb, but I like to look at autism a little differently.” Sitting on the floor together, I placed a ruler on the floor between us. I pointed to the 10-inch mark. “Your brother Isaac had this much autism. That’s why he couldn’t talk, or call me mama, and why he struggled having friends other than your brother. We did therapy with Isaac every single day because therapy helped make his autism shrink so that things that were hard for him would get easier.” I then pointed to the 4-inch mark on the ruler and explained, “Your autism is much, much smaller which is why you don’t have trouble using words and drawing pictures about your feelings and it’s much easier for you to make friends.” Caleb looked at me with troubled eyes and asked, “Is autism bad, mama?” I shook my head and smiled. “Not at all. Autism is what makes you special. Your autism helps you memorize something the first time you see it. But autism also makes you get frustrated with new things. That’s why we do therapy. So that you don’t get so frustrated when you try new things.” I studied him for a reaction and to my surprise Caleb’s face lit up. “So autism is like my SUPER POWER!!” Through tearing eyes, I couldn’t help but smile too. “Yes, baby! That’s exactly what it is. Autism is your super power and you are my very own super hero.”
Caleb is the youngest brother of Isaac Lytle who passed away in 2007. The ISAAC Foundation is a 501(c)(3) non-profit organization that was founded in Isaac’s memory after his death.
Holly, mother of Caleb