Tessa: Tonight at Girl Scouts we had a pineapple mango smoothie.
Toby: Mango?! We played mango in the library at school. You have to cover up all of your squares and then yell, “Mango!”
Tessa: That’s bingo. Mango is different. It’s a kind of dance.
Mom: That’s tango.
I have two younger sisters and one younger brother. Tessa is 12 and has moderate bilateral hearing loss, while Toby, 9, has moderate to moderate-severe bilateral hearing loss. My youngest sister, Birdie, who is 18 months old, isn’t diagnosed with hearing loss. My father is hearing and my mom has moderate unilateral loss. Your first question may be “Is it genetic?” We aren’t really sure. Once I was diagnosed, my parents went to a geneticist and they were unable to find a gene. However, three out of four children in one family seems like too much of a coincidence.
Of course, we fight as all siblings do. Or rather, Tessa and Toby fight and call my room Switzerland after getting a WWII lesson from our grandmother. We have TV tokens to regulate our time on the TV. We play Minecraft together. Toby and I play Doom, one of the oldest video games ever, with our dad. Aside from our taste in video games, we’re a normal family (with a few hearing issues, but does that really matter?). We all connect to an FM system before going to the zoo or the state fair to ensure that we can hear our parents even when it gets really loud. We all get scolded after coming downstairs to a meal and asking, “What?” enough times to be asked if we have our hearing aids in. We all tease each other for missing information, even though we probably missed it ourselves. The conversation, in the beginning, is a real one from about four years ago that my mom was reminded of when a Facebook memory popped up.
“We all tease each other for missing information, even though we probably missed it ourselves.”
Since we are hard of hearing, Tessa and I use shake-awake alarm clocks for school. I also use mine to wake me up in time for morning practice for swim team. These also detect fire alarms when they go off, resulting in a blinking display with FIRE written across it. The alarm goes off with the speech “Fire, get out,” for those of us that can hear it.
However, I know that I wake up to fire alarms due to an incident at a DHH weeklong camp in Michigan called Lions Bear Lake Camp, which also has sessions to support people who are blind or have juvenile arthritis. Several years ago, when I was still in the youngest girl cabin, the fire alarm went off in the main lodge due to a burner being left on on the stove. The alarms resonated throughout the cabins and I was one of the first to wake up. The catch to this story: Almost everyone was D/deaf or hard of hearing with their equipment out. We woke everyone up at 1:00 in the morning to vacate the cabins in the middle of summer, miming fire and indicating to put on hearing aids and cochlear implants until everyone understood the situation.
Although that was a crazy experience, it is a camp that I routinely attend each year with my siblings. Both Tessa and Toby go to the camp as well. Last year, I entered the Leadership Development program to learn how to manage kids in groups. This is one of the experiences that I am proud to share with my siblings, and I’m able to do it since we’re all hard of hearing.
Another camp that we attend is called OYO. It’s much more ASL and Deaf Culture oriented. However, this camp enables the most fluid communication I have ever encountered, with many interpreters for the entire week. For example, during meal times, we all eat in the mess hall. Counselors flash the overhead lights to get everyone’s attention and we all look at one of the three interpreters throughout the room to understand the menu. A staff member speaks through a microphone for anyone who doesn’t understand ASL. If you have a hard time understanding the speaker and don’t understand ASL, there are interpreters. It’s a really cool set up.
Most campers communicate in ASL, and that was what sparked my interest in learning ASL. Simply put, I’d rather not talk about boys with one of my friends through an interpreter- I’d rather tell them myself. We had so much freedom to make friends and communicate during team building activities that it enabled really special bonds to form. This also includes bonds between my siblings and me. Neither of them know ASL but still talk to their friends through interpreters and writing back and forth. They don’t let the language barrier stop them.
My daughter Ellie was the first deaf person I ever knew, and she was three years old when I learned that she was deaf. I never expected to have one deaf child, much less three.
We do not know the cause of my children’s hearing loss, but we have come to terms with the expectation that we will probably never know. In all honesty, it doesn’t change our love or expectations for them, our hopes for their future, or how much they drive each other crazy.
Probably, to me, the biggest surprise is how little patience they have for each other’s misunderstandings or inability to hear. I joke that our family motto is “What?” It is always surprising to me that the same kid who asked “What?” five minutes ago is now exasperated with his sister when she asks him to repeat himself. We spend a lot of time talking about patience, communication, willingness to repeat, and how “never mind” isn’t a phrase that we condone.
One positive of having hard of hearing siblings is that they have each other. When one of them is frustrated with a school situation (a teacher who won’t use the FM system, a problem with closed captioning, or a miscommunication between friends) they always have a sibling who can commiserate and understand in a way that others don’t. I am grateful for their built-in network of support.
When I think of our family, hearing loss is a big part of who we are. It’s how we “do life.” We use closed captioning all the time. We say “What?” and we don’t say “never mind.” We wear FM systems and ask others to do the same. We self-advocate and explain. We are patient, understanding, and face each other when we talk. It’s part of my family’s fabric, and I wouldn’t change that for anything.
Do you know any families with DHH siblings?