In my upcoming YA novel, Traveler, my protagonist has a brother on the autism spectrum. This isn’t just because I wanted to throw that in there and portray a person with autism as something other than a supernatural freak or an unemotional human computer. I also very much wanted to show what an impact -for the better – having a brother on the spectrum was for Jessa, my protagonist.
Her resilience, her kindness, her patience and embrace of all different types of people are what help her through this strange new world she’s navigating, and her relationship with her brother is one of the strongest points of the book.
But I’m not talking about that today. Today, my theme is birthday and I want you to meet my inspiration.
My daughter is fifteen years old today. And today, through no small act of coincidence, is World Autism Awareness Day.
You see my dilemma, right? World Autism Awareness Day is April 2nd, every year. And every year, my Anna has autism trumpeted and touted and waved in her face all day long because everyone knows that Anna is the big sister of David, a kid with autism.And everyone kind of forgets that it’s Anna’s birthday. Or that Anna knows full well she’s the sister of a kid with autism. Or that Anna would probably dearly love to have just one day, all for herself. Just one.
Because she doesn’t ever get them.
Being the sibling of a special needs kid means you never get the lion’s share of the attention in the house. Sometimes, depending on the circumstances, you may not get much attention at all because it needs to be focused elsewhere. So you eek out whatever time you can get, when you can get it.
Mostly, you watch.
You watch as your sibling gets cheers and applause and happy dancing all because they wrote the alphabet, or ate a green bean, or remembered how to tie their shoes.
Meanwhile, you get nagged to do your homework, told to eat all your vegetables, and reprimanded for throwing your shoes in the corner of the living room.
You hear everyone tell your Mom over and over again how strong and wonderful and loving she is for being an autism Mom, but no one ever notices that you’re an autism sister, and you have to be uncommonly strong at an age when you shouldn’t have to worry about anything but you.
When other families are heading out the door to go see movies, or play at the park, walk the mall, or take a vacation, she knows that we can do all those things, but we won’t really know for sure that we can until it’s time to go, because we might be having a bad autism day. Or we might have cut those things short and leave if something suddenly triggers her brother. And she’s learned over the years to just go with it, because it is what it is and there’s no changing that.
She’s the one who – at the tender age of five – faced an entire group of her friends down and told them that she wasn’t playing if her brother couldn’t play, too, because they were a team.
She’s the one who got in trouble at summer camp because some kid her age called her brother a retard, and she informed me (without a trace of remorse) that she “pushed him down until his face met the mulch”.
She’s the girl who writes papers for school about genetic research and autism, bullying and autism, inclusion and autism and tirelessly raises money every year for autism research.
She’s his biggest champion and also the one who fights with him on a daily basis, just like any other sibling.
She’s the one that taught him every song her chorus class was singing, and sang with him on long car rides. She sang to him when he was having a meltdown in front of the babysitter once, and saved the day. She is, hands down, his best friend, partner in crime and social role model.
And unfortunately, she does it all from the shadows, most of the time, while her brother stands in the spotlight.
So on this much-lauded World Autism Awareness Day, I want to turn the spotlight on my beautiful and beloved girl, for all she is, and all she does. Today is her birthday, and she gives up enough as it is.
Happy Birthday, my girl. Your brother is lucky to have you as part of his daily joy. And so am I.