Fiona sat on my lap facing the ear doctor and the nurse, and her talker sat on her lap so that both of us could use it. Fiona mostly didn’t use it, but I tapped away as I talked with the medical professionals, trying to model for Fiona. With the talker, I said phrases like “Ear doctor” and “Look at ear,” because the ear doctor was planning on doing as much. We’d just come from the other ear doctor’s examining room, the one in charge of assessing hearing. Now we were assessing ear health.

“So her receptive communication is pretty good?” the doctor asked, a woman with long red hair tied back.

“Yes,” I said. “She understands a lot.” I looked down at Fiona, wondering if we had the word “understand” opened on her talker. I knew we had “know.” “Right?” I asked. Her curls had spiraled in the summer humidity. I tapped on the talker, “You know.”

Fiona brought up the animal screen. She does this lately. Apropos of seemingly nothing, she hits “A” on the talker, which reveals 100-some animals (along with a few animal sounds), and she picks an animal. She says animals while she’s eating. She says animals while I’m driving. “Lemur” and “Wolf” are the most popular hits right now, but she’s been known to hit anything from “Tick” to “Antelope.”

Today, she hit, “Roar.”

“Roar,” I repeated, a little surprised. I kept talking with the ear doctor. We discussed ear infections, Eustachian tubes, eardrums, and the like.

Fiona said, “Roar.”

“Roar?” I asked. “What animal says roar?”

She brought up the animal screen again. “Opossum,” she said.

“Nooo,” I said teasingly, and rustled her curly hair, and tried to find bear, but she said “roar” again.

“Why do you keep saying roar?”

The ear doctor piped in. “Well, we have Dr. Roher here.”

And that’s when I realized: We’d just come from Dr. Roher’s examining room. Dr. Roher was the hearing assessment doctor.

“Oh!” I said. “Doctor,” I tapped on Fiona’s talker, and then I hit, “Roar.” I repeated it for her: “Dr. Roar.”

I was tickled by my daughter’s ingenious methods of referencing the other doctor. I was proud and impressed.

The rest of the appointment went well, and then it was over, and Fiona was thrilled to go home. “All done!” she signed with her hands and added an enthusiastic cry. We got in the car, and I drove us home, twenty miles down a Vermont highway, through the Green Mountains, delighting in my daughter’s intelligence.

A roar. A full, deep, prolonged cry. Or to roar, to move at a high speed making a loud prolonged sound. The car did indeed roar as we drove—it’s a new car whose one and only fault seems to be the low noise it makes in sixth gear, so from the front seat I couldn’t hear Fiona’s talker. She said things, but I could only make out the occasional metallic din of the talker’s voice piping up from the back. Was she telling me she was tired? Was she asking for water? Was she naming animals again? Beaver? Deer? I didn’t know. We need to use the external speaker, I thought as I drove. (We have this one.) I need to charge and attach that, I thought.

But gradually, as the mountains passed us by, the ones still green but soon about to turn orange and red, I realized I had no idea what Fiona had wanted to say about Dr. Roher. Back at the office, had she wanted to see the doctor again? Had she wanted to say how the doctor made her feel? Had she wanted to compare the hair of the two doctors? Both were long-haired redheads, but Dr. Roher’s hair was smoother, like silk. I had no idea. It took two minutes for Fiona just to communicate to me the person’s name. And what if the Doctor hadn’t been a Doctor Roher, but a Doctor Konigsberg? Or Gurganious? Blaskowski?

Maybe she was just commenting that the doctor’s name sounded like the roar of an animal. This was my assumption at the time. Maybe she was just noting the coincidence. But I can’t be sure.

A fearless proclamation of truth, the Buddha said, is like a lion’s roar.

A lion or tiger can roar as loud as 114 decibels, says the Smithsonian Magazine, about 25 times louder than a gas-powered lawn mower.

But “roar,” my daughter had said, and it had taken me two minutes (and the help of a stranger) to get it.

There are many times when I just don’t understand Fiona. Like this morning, before our appointment. She was whining and crying. “What’s wrong?” I asked, and all she could do was cry and cling at me and let me know with gestures that she wanted me to pick her up.

And in less than two weeks, she’ll have her first day of school. When she comes home, she will say the names of her new teacher and her new classmates, because we will program them into her talker and because those are always her favorite words to say. And she might add another word or two to those names, like “Draw” or “Slide.” But I won’t necessarily know what those combinations of words mean, or even if they’re meant to be combined at all.

My nonverbal daughter will get better at expressing herself with the talker; I’ll get better at understanding her. We’ll be okay; we’ve got a way forward. We’ve got this talker, and a hundred resources on the Internet, and therapists who support our path. I kept driving, to the roar of the car, to the silence of my girl, between the green of the mountains rising on both sides of us. The drive home was an easy one, friends, but still, in my mind I thought, “Damn, if this road isn’t hard.”

[Image description: A selfie of Fiona and me. I'm making a surprised face, lifting my eyebrows and opening my mouth in a smile. Fiona's sticking her tongue out slyly to the right.]

[Image description: A selfie of Fiona and me. I’m making a surprised face, lifting my eyebrows and opening my mouth in a smile. Fiona’s sticking her tongue out slyly to the right.]

[Image description: A selfie of Fiona and me. I'm pursing my lips and scrunching my nose. Fiona is grinning and sticking her tongue out ever-so-slightly to the right.]

[Image description: A selfie of Fiona and me. I’m pursing my lips . Fiona is grinning and sticking her tongue out ever-so-slightly to the right.]


16 thoughts on “Roar

  1. Clever Fiona! I can totally relate to this – trying so hard to understand exactly what they’re trying to get across to us and often feeling like you’re coming up a bit short. But then forging on knowing that they have the tools they need now and that we’ll get there. Great post!

  2. What a fantastically expressive picture!
    I must seem like a stalkerish fan of yours, but, as a long-time special education teacher, it’s assuring to read the words of a parent who can express the life experiences of so many of the unappreciated parents I have known who foster their children’s communication and trust in the long term investment they have made in their children’s language. I can’t tell you the number of times I have told people what I do for a living, only to hear them respond by asking how I “handle the parents”. I honestly answer that I try to learn anything I can from them. I believe that at least some of Fiona’s doctors and medical support team are learning from your example, even if they never acknowledge it.

  3. Great AAC story, containing the full spectrum of these experiences: the clever surprise,
    the lag in decoding it, the wondering about all that was left unexpressed.

  4. As a SpEd teacher for over 22 years, I’ve loved reading your views on AAC, parenting, and of course Fiona as her wonderful self. Discovering you live in my home state of VT made me love you even more. Enjoy those green mountains with your girls, they are magical to grow up in.

  5. I love this so much, and like most blog posts that I love, it is because I am having a very strong ‘me too’ response to it. My daughter has also delighted me endlessly with the connections she has made and been able to communicate via AAC. And frustrated me endlessly with the words left unsaid/signed/tapped and the ones that have been said so many times repeatedly that you know you just haven’t quite got it yet so she has to keep trying, only it’s just the same word over and over and over…Also, she is starting school in 2 weeks. And people are her favorite to talk about. I’m so glad to be following your blog and kind of wish I lived in Vermont. I think my girl and yours might just enjoy one another’s company…thanks so much for your great writing!

      • Now I have Duran Duran in my head. You should play it for her…
        The words of the month here have been ‘lady’ and ‘man’ (which she can say with her voice! So many times in a row!). I think because it is not possible to contain every human’s name in her talker. Or to know every human’s name, for that matter. But that won’t stop her from talking about them. Whoever they are. 🙂

      • This may be a strange suggestion, but does she hear adults talking about her syndrome often? Wolf being the part of Wolf-Hirschorn that can be easily found on a talker… I wonder if she’s curious about a term used when people talk about her.

  6. It’s rip-roaring hard, but damn if it isn’t happening! I am so impressed by Fiona’s progress and your determination and patience and willingness to admit your own doubts and shortcomings. I actually have no doubt that you both will look back on this time and chuckle together!

    As an aside, have you ever read Robert Rummel Hudson’s writing about AAC and his daughter Schuyler? If you’re not connected to him already, I think he’d be a wonderful resource for you — as would Schuyler.

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