My name is Lacey, and I am the Community Manager for Shadow’s Edge. I have frequently written for the Shadow’s Edge blog, oftentimes about subjects relating to my life experiences and tips I want to share based on them. With April being Autism Acceptance Month, I wanted to share my biggest life lesson so far – how my brother’s autism taught me to choose love over bitterness.
You see, my older brother has Autism Spectrum Disorder (ASD).
My brother is on the nonverbal/high assistance end of the spectrum and cannot be left unattended for things like cooking, cleaning, taking a shower, using the restroom, etc. (You’ve probably heard of the term “low-functioning autism” when some people talk about a diagnosis like his, but I really don’t like that term). He pretty much needs to be assisted 24/7, which can be a little challenging considering he is over 6 feet tall and carries the body weight of a 28-year-old man. My brother probably will never be able to live independently. He was diagnosed the year I was born, so I don’t know anything different.
Sadly, I have to admit that I spent many years bitter about it.
I spent many years feeling embarrassed of him. As a child, he would sometimes take off all his clothes and run around at a full speed skip… and it didn’t matter if we were at home, at a family reunion, or at the supermarket. He didn’t do it for any sinister reasons. It was purely because he hated the feeling of clothes due to his sensory issues. “He was just meant to be some kind of artsy, nude interpretive dancer,” is what I chuckle to myself about it now.
One time when I was a kid, a friend from school came over for a slumber party.
I rarely had friends over, but my brother had someone to watch him that evening. Since finding someone reliable and attentive enough to watch him was a challenge, I was pretty dang excited. My bro decided that this was the perfect time to express himself through his nude dance… and NO ONE could stop him. He slipped past his daytime caregiver, ditched his clothes, and went streaking through the house, butt-naked, giggling the entire time. “Oh my GOD! Put your clothes back on!” the caregiver was yelling as she was chasing him and freaking out. But Bro was having the time of his life, blaring some Veggie Tales tune on his MP3 he was pressing to his ear. At that moment he intended to be true to himself, to drown out the sounds of the world around him, and to outrun the caregiver for as long as he could.
As he pranced by my bedroom door in all his naked glory, my friend had just opened to door to go use the bathroom. I was horrified as she screamed at the sight of the naked boy zipping down the hallway at full speed. The next day at school, she told our entire grade that my brother was a creepy naked weirdo. Our classmates started to whisper about me and tease me. The teacher had to pull me out of class and ask me uncomfortable questions, to which I had to explain my brother’s autism and this particular behavior. It was humiliating, and that “friend” teased me about it all the way until senior year of high school.
Honestly, now I can look back on those experiences and laugh. We have collected some serious sitcom-level content over the years. But it wasn’t very funny when I was a preteen.
I felt robbed of having a normal life for many years. I couldn’t have slumber parties or watch tv without him making loud noises and drowning out the sound. We couldn’t go to movie theaters because he would make loud noises and we would be asked to leave. I was angry that whatever-creator-there-was had decided to make my brother disabled. There was a time where I felt like I hated him. I even hated my parents because I thought they had brought me into the world just to become his caregiver.
Things changed when he turned eighteen…
When my brother turned eighteen, my dad stopped showing up for his visitations with him. And there was no warning, no conversation, no “goodbye” for my brother… There was just… no more Dad. Every Friday, Bro would patiently wait for him to come, rocking back and forth in the front doorway. And when the sky went dark and the stars appeared, he would realize no one was coming… and wail.
The wailing… it wasn’t just crying – it was almost like painful screaming of someone who’s heart has been ripped out. The agonizing grief was so audible and so overwhelming. I can still hear it echoing in my brain as I write this. I don’t believe anyone has heard grief the way I heard it in my brother’s cries. My brother can’t speak, but you could almost hear what he was thinking in his cries: “Where’s my dad? What did I do wrong?! Why did he leave me?! Why doesn’t he love me anymore?!”
The grieving continued for days, then weeks, then months…
After about a year or two, Bro had finally adjusted to this new way of life. But on occasion, he will be reminded of his loss and the wailing would start up again for another few months. I think people who don’t have someone with a cognitive disability in their lives understand that EVERYONE feels emotions – whether they are neurotypical, have autism, down syndrome, cerebral palsy, etc. There seems to be this weird misconception that all they feel is “happy” or “bubbly.” I have told my brother’s story to people before for them to say things like “Oh my gosh! And he was sad? I didn’t know he could feel that way!” or things like “I mean, he’ll get over it if you just give him a toy or something right?”
Wrong. Wrong. Wrong. He feels just as deeply, if not more, than you or I could ever feel.
Seeing my brother’s grief made me see the full extent he felt love for the people in his life.
He loved someone so much that he felt a grief strong enough to shatter his heart into a million pieces. He may not be able to speak, but he is more committed to loved ones better than most verbal people are. Sadly, it took me seeing someone throw that love away to make me realize how important my brother was to me and to see how caring he was. After my eyes were forced open to this realization, I decided something: It was time for me to choose love over anger, bitterness, and embarrassment.
It’s been ten years since then…
He could have closed himself off completely, stayed bitter and angry at the world. But more often than not, he will still choose love when he can. He will give you BIG bear hugs and big, sloppy kisses all over your cheeks. He still wants to go out, meet new people, and have fun. Despite his heartbreak, he is still my sweet big teddy bear of a brother.
I can still see the hurt in him sometimes, in the way he doesn’t share his heart with others as readily. Sometimes I can feel him resist getting attached to new people in his life, like he is preparing for them to disappear as well. Sadly, he’s right in doing so… people don’t tend to stick around in our lives too frequently. People come in and say they will be there forever, then one day decide it’s just too hard. But that showed us how special it was when people stuck around (a.k.a. my stepdad, my now husband, and a few select family friends).
Now that we are adults, we have a bond that’s stronger than what most siblings have.
I no longer feel like I’ve been robbed of a normal sibling relationship, contrary to what many people have suggested. Honestly, I like to think we have a seriously rewarding friendship now that I have outgrown my bitterness. We can still argue and banter like any normal siblings, it just looks a little different. It’s usually through a picture exchange communication system (PECS) or with funny, theatrical facial expressions like you would see in Disney movies. He and I can have inside jokes and can laugh at the same things just as any siblings would.
I sometimes wonder how life would have looked if my brother didn’t have autism. Would people have stuck around if there wasn’t a disability they couldn’t handle? Maybe. But I can’t (and wouldn’t) change who my brother is. His circumstances forced us to see what was really important in life. My brother taught me that to choose love over bitterness is the most rewarding choice you can make during our short time on Earth. My decision to choose love means I get to enjoy being the little sister to the best brother there is.
Want to read another blog about tackling bitterness? You can read Jamison Hill’s blog “The Battle Against Bitterness” by clicking here.