My sister, Ellie, is my best friend. That’s something I’ve never questioned. Right now, maybe you’re picturing a typical sister relationship, whatever that may look like in your head. In some ways, my relationship with my sister is fairly typical. We have fights about the smallest things. I tease her a lot about something funny she did or the cute boy in her class who always makes her giggle. However, our relationship is nowhere near ordinary, because we’ve never had a conversation. Our relationship is built entirely on being in each other’s presence. Ellie is nonspeaking and struggles significantly with many fine and gross motor skills, preventing her from vocalizing, writing, or typing her thoughts in the same way most people can. However, that does not mean she does not have thoughts, or that she’s not just as intelligent as any other 17-year-old. If I’m being completely honest, she’s probably more insightful and intelligent than most of the people at this school when they were 17.
For 12 years, though, everyone in her life, myself included, didn’t see this part of her. We assumed her ability to think and comprehend developed at a similar rate to her speech and motor skills. At age 11, she was still learning her ABCs and 123s. She couldn’t do everyday tasks like putting on clothes and brushing her teeth independently. Her sole forms of communication for much of her life were motions for “yes,” “no,” and “help;” wails, laughs, and screams; and shaky, sometimes inaccurate pointing and grabbing. Eventually, we got her an iPad app with large buttons that allowed her to indicate her basic wants and needs, but even that wasn’t much. Her pointing was often off, so she still couldn’t say what she meant, and the limited number of buttons meant she couldn’t have a conversation or truly share her thoughts. Ellie’s inability to communicate her thoughts wasn’t a problem to my family, because we all assumed that she had no thoughts to communicate. So, until the summer after she turned 12, we all believed that this was enough, that we were doing things right. We assumed she still needed kindergarten-level education at a middle school age. We assumed that we knew her, and we could not have been more wrong.
During the summer of 2014, we discovered an alternative form of communication known as the Rapid Prompting Method (RPM) that Ellie is able to use to share her thoughts. All of a sudden, I had a sister who I could actually talk to about real things. I could finally learn about her as a person, something I didn’t know I needed before but now want more than anything. Through a communication partner prompting Ellie to point at a series of boards containing numbers, letters, and symbols, RPM allows her to spell out what she has to say. With RPM, Ellie can express her thoughts eloquently and entirely, rather than through premade buttons that limit what she says to the very basics. While the process is tedious and requires more patience than anything else I’ve encountered thus far, it’s definitely worth it.
Right now, I can’t communicate with Ellie on the boards. The process takes so much of her energy that she rarely communicates using them outside of school and therapy. She has a good rhythm going with her occupational therapist, but she has to start with the very basics with each new communication partner. In order for me to have actual, open-ended conversations with her, we would have to practice several times a week at least, especially since I don’t have the professional training that her therapists and teachers do. While I would love to be able to fully communicate with my sister, she doesn’t have enough stamina yet and our schedules never lined up for us to regularly practice. Regardless, I still could not be more grateful for RPM. RPM has given Ellie a voice and the ability to make her intelligence, her humor, and every other incredible thing about her known to the world. RPM gives her life the purpose and potential that it never had before and in turn gives my life a purpose and quality that it never had before.
I long for a conversation with Ellie someday; I want to know what goes on inside her head—her hopes, her dreams, her likes, her dislikes, and everything else there is to know. That may seem simple, but it’s something I’ve wanted ever since I learned about RPM. RPM allowed me to see my sister as a human being in the same way that I see everyone else in my life, and RPM gives me hope that one day, possibly years or decades away, I’ll be able to really talk to her and learn from her.
For most people, being away from their siblings when they go to college isn’t that big of a deal; it may be sad, but it doesn’t change your relationship in the same way that mine and Ellie’s has changed. When I’m at Wesleyan, I rarely know what’s going on in Ellie’s life. The only way to talk to her is through my parents, and that’s nothing compared to being with her in real life. When we’re together, we make each other laugh, mostly with fart jokes, and we enjoy each other’s presence. I crave having that time with her, and I didn’t appreciate it as much as I should have in high school.
Since I was little, I’ve spent so much time hearing others talk about their siblings. I wondered what it would be like to have a neurotypical sibling or even just one that can speak. There are times where I’ve gotten quite frustrated with her, either because I can’t figure out what she wants when she comes to me for help or because she’s being loud and won’t listen when I want her to shut up. However, even though she can occasionally be a bit much, I could not be more grateful for her, and I wouldn’t want anyone else but her as my sister. Not only has she taught me to truly appreciate how easily I can communicate, but she has taught me more about life as well. Through our relationship, I have learned that friendship is not defined by how many facts you know about a person, but by the comfort you feel around them. Ellie and I have never had a conversation, and my friends definitely know more information about me than her, but there is no one I care about more or feel more comfortable around than my sister.
Maybe there’s someone in your life who Ellie reminds you of. Maybe there isn’t. That’s okay. Maybe you’ve skimmed this entire article and now you’re just reading this sentence. That’s okay too. If there’s one thing I hope you take away from this, it’s the importance of appreciating how easily you can share your voice and express yourself. Remember that everyone has something valuable to share, even if they can’t communicate their thoughts the same way you can. Intelligence doesn’t have a look.
Sophie Green is a member of the Class of 2022 and can be reached at firstname.lastname@example.org.