Growing Up in Dante’s Shadow

The Glass Child Effect refers to the experience of a sibling in a family where another child has a medical, behavioral, or developmental condition that requires significant parental attention and resources. Another Autism parent referred to my daughter as a glass child, and immediately I wasn’t a fan of the moniker.  The term “glass” is metaphorical — it doesn’t mean fragile, but rather that the sibling often feels invisible or overlooked because the family’s focus is on their sibling’s constant needs; despite the clever connotation, I still don’t like it.  

Children who grow up with an autistic sibling bear an emotionally complex burden.  They feel love, protectiveness, and frustration simultaneously.  They also often develop enhanced empathy, patience, and prosocial behavior.  Their unorthodox and sometimes chaotic childhood can shape their identity, social skills, and emotional resilience over time.  They experience guilt over the negative feelings they may have toward

their brother or sister.  

Here is a short excerpt from my memoir, Dante’s Journey: Confessions of an Autism Dad. The chapter is entitled, Growing up in Dante’s Shadow. 

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When Angelina was in the 2^ND grade, she had to read a book for school.  I remember thinking that the assignment was sophisticated for nine-year-olds.  The book, Wonder by R.J. Palacio, was about a boy named August Pullman who was born with a facial difference that prevented him from going to a mainstream school until the 5^th grade.  Auggie is the new kid in school which can be difficult enough, but he must convince his new classmates that he’s just like them, despite appearances.  So, every night Angelina and I would read a chapter or two together, which wasn’t so bad because the chapters were generally short, sometimes only two or three pages.  Auggie’s character is inspiring to say the least, he endures countless surgeries during the first few years of his life, “the bigger ones” he points out, happened before he was four years old, so thankfully he doesn’t remember those.  Throughout the first fifty pages or so, I hold back the tears, finding Auggie’s story similar to Dante’s Journey, in many ways.  Auggie points out that he wanted to go to school only if he could be like every other kid going to school, how he only has a few really good friends, and of course, how others reacted when they first set eyes on him.  I often wonder (no pun intended) how Dante assesses his life, and the cards that God dealt him, does he feel the same way that Auggie does?

 “Seems like Auggie has a lot of the same problems that Dante has?” 

Angelina looked up at me and nodded, “I was thinking that too, but I’m not sure if Dante wants friends, he’s kind of a loner.  And I don’t think he cares what other people think of him really.”  Out of the mouth of babes.

         A week or so into the book, we reached page 82, “A Tour of the Galaxy.”  This chapter was only a page and a half, but it would be an eye-opener for me, written from Charlotte’s point-of-view, it begins with, “August is the Sun. Me and Mom and Dad are planets orbiting the Sun.  The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.”  Clever metaphor and a rather thought-provoking way to begin the chapter I thought. 

         Charlotte continued describing what HER life was like growing up in Auggie’s shadow, the sibling of a special needs child.  She was well aware how “this universe works.” She would make sure to play quietly while Auggie was taking a nap after yet another procedure which would leave him weak and in need of rest.  She was aware that nine times out of ten her parents wouldn’t be available to watch her play soccer, due to Auggie’s many appointments; speech therapy, physical therapy, a new specialist or surgery.   And for all of her sacrifice, mom and dad would always tell her that she was the most understanding little girl in the world.  Charlotte gave a hint that she wasn’t sure that she agreed with that assessment, but she knew there wasn’t any use to complain.  My eyes welled up a bit as I finished the third paragraph.

         “Is that how you feel Angelina?”  she just nodded, keeping her eyes on the book.

         Charlotte would have to figure things out on her own and not ask for work on her schoolwork, and she would lie if her day was bad and say it was good, knowing full well that her worst day, worst fall, worse headache, worst bruise, worst cramp, worst mean thing anyone could say has always been nothing compared to what Dante. . . . . . . I mean August has gone through.   All this time, Angelina felt voiceless, like Dante, but different and in some ways, even more tragic. Here I was, boasting that I was Dante’s voice, his advocate, while Angelina, who could speak for herself, chose not to.   Maybe Angelina just figured her problems were nothing compared to Dante’s, or maybe she figured her mom and dad go through enough as it is.  I felt like the worst in the world right then and there.  

         It always saddened Angelina to watch Dante struggle with tasks that she already mastered.  She realized early on that no matter how bad she thought she had it, there was always someone who had it worse.  I promised Angelina from there on out that I wanted her to never hesitate to express herself to me, and that I would make a point to be more aware of how she felt and what she might be going through. I also told her it was ok to hate her brother; because siblings fight as they grow up. I kissed her head and turned off her light, just as I was closing the door, Angelina made a confession of her own. "Dad, I don't hate Dante, but I do hate Autism."