THE BLOG
01/03/2012 04:09 pm ET | Updated Feb 18, 2012

A Brother's View Of His Sister's Autism

January 14, 2003 would be the day when I received the greatest gift to date in my young life. Being only 12 at the time, it initiated a drastic change in my everyday life, as well as a prompt transfiguration regarding my immediate family.

Hannah Isabella Reitmeyer was born in the afternoon, on a brisk yet sunny day. Her arrival signaled changes for everyone who was now deemed responsible for her well-being: my mother, my father, and now my "other" sister Jordan. Of my family members present, I remember I was the last to see her. In fact, when trying to remember all I get is the image of a photo taken from that day. I can remember my blue hat, my grey shirt, and even the color of the blanket she's wrapped in, but the appearance of her or anything else has become fragmented.

The first years of my sister's life were surprisingly as perfect as my unrealistic expectations made them out to be. Whether in the company of friends or strangers, her angelic behavior was always noted by others. As a family we used to take 23-hour-long car rides to Florida. When Hannah was still a newborn we decided to test our luck and make the usual trek. It took her 22 hours before she finally let out a whimper. Sometime after, also blurred in my memory, that sweet, gentle behavior stopped.

Around the age of four, Hannah's list of provisions grew rapidly. Diapers, bottles, and a few toys were no longer sufficient. Now a portable DVD player was the first thing we made sure to bring whenever leaving the house. Restaurants were the worst; we were always on edge and never knew when she would lose patience. When her food was late and the tantrum ensued, I've never felt more hopeless, and, shamefully at times, even embarrassed. It's not so much the screaming and banging as everyone else in the restaurant simultaneously turning around to look at you. As the episodes grew, the more accustomed I became to just sitting and trying to block everything out, even Hannah.

Instead of receiving visitors, we were now hosting therapists. When you're in your early teens, this is a confusing process. I can only now faintly imagine what it must've been like for my mother, juggling both Hannah and the rest of the house. It's an accomplishment worth commending if you knew my family growing up, but one I've regrettably never acknowledged in her presence.

Reflecting upon autism isn't easy. It's not because the memories are painful, but because they've been shrouded in time. When "coping" with autism, you're taught to reward the good and move past the bad. As a side effect, years you have with the child are subject to selective remembrance. Still I remember enough to know that the euphoric promises that come with the arrival of a newborn went unfulfilled.

The other day I found myself watching a video posted on Facebook. In it a young girl, about four years old, I'd guess, is slowly being told she's going to Disneyland. The surprise is done in the slow, drawn-out manner that parents do. Not being a parent myself, I speculate that's because they themselves probably relish the moment more than their kids appreciate it. By treating, or spoiling, a child, they can, in their mind, reaffirm their status as a good parent.

In this video the little girl is given a pink backpack in which she finds t-shirts... movies... snacks, until finally the bag is empty and a question is sprung on her. "Where would you like to take these?" her mother asks. Eventually the little girl conjures up, "Disneyland!" Utterly shocked when she learns that's the actual plan, she starts bawling from pure elation. It's a sight that makes you immediately go "aww," and those sensitive enough might even shed a few tears.

When watching, though, I felt no giddiness nor gaiety, only a mild case of melancholia. These were the moments I once thought would arrive along with my sister, but they never came. I felt as though I was cheated. Eight years earlier, my mind had promised me these moments, so naturally my expectations grew accordingly. I think over the years I grew accustomed to the situation as it was, understanding complete normalcy wasn't an option. This video, though, reminded me of what should've been, like an affliction come back to taunt me. Then, a new thought emerged. If I have a scarce amount of good memories from the past, what's going to happen in the future?

There's going to be so much I miss, I already have. When I leave home, I'm not just leaving my parents, I'm leaving Hannah. There's no one I love more, so with thoughts of leaving comes a sense of hopelessness knowing the spans of time when I won't see her. The idea of missing what's to come, alongside all that's already lost, is horrifying. Will I ever truly get to know my sister? The autism had always cast a moderate facade on her personality and I was afraid that would never change.

Routines are a major part of an autistic child's life. The goal is to establish normal behavior through normal environments, making them comfortable. For me as the brother, though, the norm got to be tense dinners at restaurants, or meltdowns in public; these were things I just expected at one point. But it would be a mistake to let troubling memories misguide my thoughts of the future. If anything, the experiences from my past have prepared me better for what's to come.