I recently read that the stress levels of mothers to kids with special needs are equivalent to the stress levels of combat soldiers. Some days, this does feel like a battle. Not so much because I feel downtrodden physically, but because I feel caught between two warring sides: in the deaf world, the spoken language team versus the sign language team. Obviously, because we are getting cochlear implants for Anna, our goal is for her to speak and to hear speech. Easier said than done. Already, we spend multiple hours a week preparing her for the hearing world. At our auditory verbal therapist's office, we practice the ways we need to be emitting animal sounds in order for Anna to learn them in a more intentional way than a hearing child would. The bunny says "hop hop hop" so Anna is attuned to the three-part building block of a sentence. The boat says "puh-puh-puh" so that eventually, when Anna is in the tub, she learns to get her lips around the "p" sound by blowing a boat across the bath.
But does she hear anything? This is the question that I ask myself a hundred times a day. Nancy, our AV therapist, swears she does. She sits across the table from Anna, lovingly scrutinizing her vision, the slightest turn of her neck. She holds Anna, studying the silence of her eyes as I call her name loudly and lowly behind her back. It is rare for babies to have Anna's level of hearing loss. Not only is she profoundly deaf, she is at the farthest reaches of profound.
Last week, I sat in the sound booth at Children's Hospital with Anna in my lap and my ears plugged with orange foam as our audiologist pumped "uh oh's" into the room along with clicking noises and bells jacked up to the decibel level of a garbage disposal. But because Anna is a baby and because babies' eyes and noises and movements are random, no one knows if she is hearing anything. Our audiologist's eyebrows go up behind the glass window? Do I think she heard something? Maybe! Or, that time? Maybe not. My subjective expertise sometimes feels like a guessing game. Sometimes it feels like a burden.
Part of me thinks that we are being fooled. But even that part of me is divided. We are either being fooled by:
a) The professionals who tell us Anna is hearing (maybe just so we keep up hope and keep talking to her)
b) Anna herself (maybe she can hear more than she's letting us know)
One time, Nancy rang a tamborine of jingle bells behind the baby's head and Anna went totally still. I stopped all movement in my hands. Anna's eyes looked left then right. I know she heard something that one time. But I don't know about all the others--all the times we have said "moooooo" or "Annnnnnna" or "Mamaaaaa" or "Daddaaaaa."
I suppose it doesn't matter. If she were hearing us, even just a little bit, would it change anything? She is still deaf enough to need cochlear implants. She is still deaf enough that I am up in the middle of the night thinking about her fitting in at school one day. I guess if I knew she were hearing something, she would seem just a little bit less removed from me.
I know that even if she hears nothing right now, a large part of our AV therapy is preparing us for the ways we will have to be intentional with our sounds once Anna's cochlear implants are activated--which, if insurance allows us a 10-month surgery date, is just three months away. Instead of going upstairs to get something, we say "up Up UP we are going UP!" Instead of stirring the soup, we say "whoosh Whoosh WHOOSH, hear us STIRRING the soup?" Some days, this is exhausting. Some days, I wish I were more of a thespian or a hockey announcer.
Because we can't really know if she's hearing anything, or something, or lots of things through her hearing aids, she's supposed to wear them "all waking hours." Have you ever seen a seven-month old who is aware that something is jammed in both of her ears? Something that is colorful and removable and chewy? She can get those suckers out within the first second I put them in. This is what every mother of a child with hearing loss is dealing with.
Every mother except for the ones that decide not to use technology to change the way their child's brain develops.
Enter: the sign language team. Without hearing aids and without cochlear implants, a child obviously needs a language. The Rocky Mountain Deaf School here teaches almost all of their classes from K-to-12 in American Sign Language. Kids can have cochlear implants at RMDS, but they're expected to use ASL as their primary language and speech as their second. The school (constructed using a 13 million dollar grant from the Colorado Department of Education in 2014) is amazing--with hallways built three times as wide as a normal school so students can sign to each other side-by-side on the way to class. Instead of installing typical floors that don't bend, the hallways in the deaf school are built bouncy so you can feel a person approaching from behind.
We participate in a monthly program led by the deaf school. Sometimes it's at the school. Other times it's at museums or organizations around Denver, with activities tailored around deaf children. Seeing the way people adjust their activities for these tiny people with tiny hearing aids always brings me to tears. We have met deaf adults who possess a happy kind of confidence and eager senses of humor and who produce this warm bubble of welcoming despite the fact that they can neither hear us nor can we understand their language. We have met parents in this group whose kids have cochlear implants and parents who are deaf and have deaf children who will not have cochlear implants because they already live in the Deaf world. I believe that the Deaf world would be a beautiful place to live. A place of of sensory sensitivity. A place of connectedness and community.
But I don't live there and I never will. I want Anna to have the choice to be in that group when she's older and not wearing her hardware. My sister-in-law, Annie, put well what I feel about not teaching Anna sign language: "Wouldn't you feel vulnerable if, when someone took your device off, you had no way of communicating?"
But Nancy put it well, too: "You have to think about your intentions. You have to think about the way her brain is developing."
So I started thinking about intentions. My intention is to learn sign language so that I can speak to people I admire in this new world we find ourselves in. My intention is to give Anna the option to speak with her hands or with her voice. My intention is fully based on my preferences and my preferences are based on loving language and appreciating well-roundedness and avoiding exclusion at all costs. My preferences have nothing to do with research or brain development and Nancy pretty much wrote the national and international guidelines on getting deaf children to speak. Our audiologist said of all the AV therapists they work with at the cochlear implant center, Nancy can get kids who were never expected to speak speaking perfectly clearly.
At her office last week, I met a boy named Eli who is 13, whose first language is Russian, who is also fluent in English, who is learning German, who is profoundly deaf. Behind his curly hair are hidden two hair-colored cochlear implants.
This is how I want Anna to be: both like me and more than me.
Nancy says that when you give a visual cue (sign language) to a deaf child, their brain believes that it should gather its information from vision first and foremost. But in a deaf child who will learn to speak through hearing technology, the brain must be taught to develop through sound first. Animal noises have an order of operations: first, you make the "moo," then you show the cow. Simultaneity is not lauded in the auditory verbal world, and for good reason, it seems.
But good reason doesn't usually dictate my decisions. This is where it gets sticky: my heart loves sign language and the solidarity it shows to both Anna and her deaf contemporaries; my head says, give her a voice first and add any language she wants later.
But later feels too late.
I realize I have said "but" about ten times in this post. This is how it is.
If Anna doesn't speak till she's two-and-a-half or three (her language will likely be at least a year behind a hearing child's, since she'll hear a year later), what language do we rely on in the meantime? I don't want to be talking and talking and talking to Anna and not give her the opportunity to respond. Already, she seems to be trying to raise her thumb to her chin to signal "mama." (Which makes me feel like doing a cheerleading split-leap and chanting V-I-C-T-O-R-Y!) And, we all know from the baby books every American, over-achieving mother has read about our hearing children that babies who speak sign language at an early age (hearing or deaf) have a more adept language center in their brain than those who don't.
Add into the mix a close friend of mine's cousin, Natalie, who sat on my couch for three hours last week to talk about sign language and spoken language, who speaks both languages fluently, who has a magnet behind one deaf ear, who is finishing her doctorate work in deaf education, who has one of the most robust resumes I've ever seen in working with deaf children, who is a sign language interpreter and an early interventionist with training in auditory verbal therapy, who says "do all the things" and who also said, when I asked her about the research behind sign language doing detriment to spoken language: "working on my thesis has ruined me on research. You can pretty much find anything you want to believe when you look at 'research.' "
If you can't look at research, can you look at people's experiences? Maybe one day, you could have, but now it feels like we have access to too many people's experiences for us to gather an adequate portfolio of what we want our own (or our own child's) experience to be like. I know that I can't make a Pinterest board for our future, and I definitely can't make one for the future of my child. Still, I have no prior experience with deafness, so it's hard to resist compiling the stories of others to assist in mapping our own.
In a recent Slate article, a born-deaf woman with cochlear implants talks about how each monthly MAPing process (which is when the audiologist programs the implant's levels according to what the brain is picking up) physically hurts her. When the audiologist changes the program, the deaf brain carves new neural pathways, and this internal etching can be painful. I picture it like a pencil grooving its way into soft tissue. As soon as I picture this, it's as though I feel a sympathy MAPing--a mental etching altering my own pathways, not without pain, as I envision the struggles of my child.
I had to stop reading recent posts on the Parents of Children with Cochlear Implants Facebook page because parents have been writing in about their cochlear implanted one-year-olds banging their heads on the floor in frustration and/or pain after being activated. There are also countless wonderful videos of deaf kids' activation days, but what you should know, if you've ever watched one of those, is that the journey for the parent of a deaf child is far more complicated than the joy and triumph that are (only sometimes) revealed in that room you enter for a few minutes on YouTube.
I assume I will not have an answer to the language question for many years. In the meantime, we love our auditory verbal therapist, Nancy, and we love our sign language teacher, Lori, and we love our daughter, Zaley, who loves helping with both auditory verbal cues and with sign language, and we love our daughter, Anna, whom we would love to talk to one day. Yes, I fear that implanting Anna will bring pain to her life. But I also know that not preparing her for our world adequately would make her life harder. It is a weight, as a parent, to know that our world must be the world of our children, even if they are different. Even if their world, a world built just for them--bouncy floors and all--might be a better place to live.