Halloween has always been my favorite holiday. As a kid, I’d spend days, sometimes weeks, thinking about my costume. Did I want it to be magical or scary? My mom had a bin of costumes that were kept in the attic. We had costumes from her childhood, which were passed down to my sister and me, dance recital costumes, and hand-sewn costumes, courtesy of my grandma.
Things are different now. I’m no longer that kid yearning to scream “Trick or Treat” at the top of my lungs. I have two kids, now, and they would love to scream trick or treat, but there’s a problem: My 6-year-old daughter is nonverbal.
She is smart, strong, spirited and opinionated, and she understands the world around her much like her peers. But Rett Syndrome has taken her voice. Using a range of communication devices and techniques, we have learned she loves dressing up, watching spooky movies and trick-or-treating. As life would have it, much like me, my little girl loves Halloween.
My daughter uses an eye gaze computer to communicate. Using pictures on a screen, the machine tracks her eyes, and the images she looks at activates a voice. The technology is incredible and we’re grateful that it has allowed us to open up our daughter’s world, but it’s not perfect.
Imagine wanting a drink of water and the only way you could get one was to look at a particular point on a computer screen. One inch to the left and you get a coffee; one inch to the right and a watermelon gets delivered. It’s exhausting for her to use, limiting to only have access to the “words” her parents think she might need and frustrating to struggle to control her body enough to focus on the screen.
She used that device to tell us that she would like to be Tinkerbell for Halloween. She has also told us she would like to be Harry Potter and Belle from “Beauty and the Beast.” All good choices, but using almost-precise technology to determine what she actually wants could completely ruin her Halloween. Her grandparents have bought all three costumes, as a contingency. Because my hope is she never says to herself, “I remember the year I wanted to be a Harry Potter, but my mom made me be a Tinkerbell.”
To prepare for our big night of trick-or-treating, I have to figure out is what is the best way to make sure our daughter is comfortable and feels included. My daughter’s hands have lost all function. As much as she would love to do the simplest of tasks, such as grab a handful of candy, she simply can’t. So when all of the other kids are screaming “Trick or Treat!” and reaching for as much candy as they can, I have had to figure out how she can participate, too.
This year the answer is simple: We printed cards for her. Her little brother, old enough to help, will hand them to the ghouls and goblins hoarding the candy. It reads:
Trick or Treat!
My sister has Rett Syndrome.
Can you put some candy in her bag?
She likes chocolate.
