A couple weeks ago, Namine had an appointment at the cleft palate clinic. But this was no mere checkup. Six months ago, several doctors, pathologists, and other specialists evaluated Namine for mandibular and tongue surgery. They declared that she should be re-evaluated six months later; this was that re-evaluation.
To say that Namine had several tests and evaluations that day would be a gross understatement. And this was not just for her palate, but also her ears, mandible, tongue, and teeth. Because Namine has had such horrible ear infections, she now has panic attacks whenever a doctor even talks about looking in her ears. This was no exception, so she threw up. She also fought the doctors, causing the scope to scratch the inside of her ear. It turned out to be a mere scratch, inside the ear but far away from the drum, but at the time we didn’t know that. We feared the worst: that her ear drum had been damaged, even punctured. But after another examination (which Namine also hated, but during which she thankfully did not throw up) we learned that there was only a lot of blood because there are a lot of delicate veins in the ear. It was merely a scratch, after all, and the blood was not even pooling inside, and thus not blocking the canal.
The hearing test went much better. Namine was quite excited to put on the headphones, and she aced the test. Her hearing was one of those things that was predicted to be quite limited, if it was there at all; but despite Namine’s smaller ear canals, her hearing is as good as ever.
Another test Namine had to have done was a video x-ray of her talking. They gave her a microphone and told her that she needed to repeat the phrases they said. I knew she wouldn’t give them any problems; after all, they gave her a microphone and she’s a little diva. The phrases were of course designed to see how she closed off for plosive sounds, consonants that she could not make correctly due to the Pierre Robin, that kind of thing.
I had the chance to talk to one of the speech pathologists after one of the evaluations. He explained to me what I already knew, about how Namine leaks air when she speaks due to the physiology of her palate and tongue. A limitation that Namine has to deal with is the fact that she’s tongue-tied; the frenulum (webbing under the tongue) extends to the tip of her tongue, vastly restricting its movement. Despite this, Namine has figured out how to make sounds previous speech therapists and pathologists have said she could never make.
One example of this is the “L” sound. Typically, it’s made by touching the tip of the tongue to the roof of the mouth. Because Namine’s frenulum tethers her tongue down, she raises the middle of her tongue in order to close off enough air to make the sound. Of course, she doesn’t think of it in such technical terms; she observes how we make the sound, and she mimics as best she can. But isn’t that how all speech is learned?
So I was talking about all this to the speech pathologist. “Yes,” he responded, “she can approximate the sound, but it’s wrong.” His position was that as long as the physical configuration of Namine’s mouth wasn’t normal, she would always make certain sounds the wrong way. I knew that I would not change his mind, and further argument would only anger me, so I just said, “okay, I understand.”
I’ve said quite frequently that I’m no expert. I’ve received no medical training, save for that which Jessica and I have learned to take care of Namine’s medical needs. But I don’t accept that Namine speaks incorrectly. I believe she speaks in the way that she can, in the way that works for her. She needs to be able to communicate, and she needed to figure out how to do it. No one could help her in this way; we, her parents, and her therapists could show her how we speak, but she cannot imitate it precisely. She had to, in her own way and in her own time, figure it out for herself. Does that make her different? Yes, and we accept and love her for it! But wrong? Never in your life.
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