Tuesday, April 17, 2018

I am his trusty translator, but I will be glad not to be

"I hope she feels better!" Max is saying into the phone. He's talking to a relative who has an ailing mom. I can hear the man saying, "What, Max? What?"

And so I lean over and say into the speaker, "He said he hopes she feels better."

Max does not much like to use his iPad speech app, TouchChat with WordPower, at home. He feels that people in his family ought to understand him, although he knows that we don't always, and that his app makes it easier for others to know what he is saying. (He does have an incredibly clear way of saying "I hate you!" to me. Of course.)

Over the years, we've been known to tease Max about the way he repeats himself, in the hopes that we'll finally get what he is saying. (See: Want to buy a monkey?) As he gets older, though, it's getting more important for him to understand—or, more importantly, accept—that his words are not always understood, and he needs augmentative assistance.

Max is getting a little better about this. He goes to a teen night program at his high school where students from another school visit, and Max has been asking to take his iPad along. One night, he also brought copies of cards from the conversation game TopicTalk. But at home, he wants us to understand him, and that is not always possible. In fact, Max used to think that it was our problem, not his, that we didn't get what we were saying. He used to lean in closer and shout stuff into my ear.  He doesn't do that as often anymore.

When we're out and he doesn't have his iPad on him, I translate for others: 

"He'd like avocado on his hamburger, please!"
"He's asking where you go to school."
"He wants to know if those sneakers come in red."
"He wants to know why you have no hair."

OK, I didn't say the latter, which Max said to someone in our neighborhood who's bald. Thankfully, the guy didn't understand him, and I later had a discussion with Max about Thoughts You Keep On The Inside.

I am always there for Max. But we are getting to the point where I'd prefer to not to serve as his faithful translator so he'll use his speech app, and be more independent about communicating. I do realize that it is not the most fluid form of conversation to have to type out words. I have high hopes for voice-recognition software like Talkitt, which has been in development for a while. I'm realistic about Max's speech potential: While he continues to make some progress, his articulation will forever be challenging for others to understand. The stroke he had at birth caused this, as it can in adults who've had strokes. But for sure, I am grateful for the speech he does have, and the various ways he expresses himself—with typing, gestures, nodding his head, shooting me dirty looks.

I can't always be there to be his translator, especially because this job just doesn't pay very well. No, really, I have a feeling that as Max matures, he'll increasingly want communication independence. And that's the way it goes: I can't force anything—Max has to want it himself in order for it to happen.



  1. My son, who is completely non-verbal, uses Proloquo on the iPad. The biggest problem with using it in public (e.g. ordering at McDonalds) is that the volume isn't loud enough for others to hear so I still have to repeat everything.

    Have you experienced this?

    1. Same for us, Janet, this has been an issue.

    2. I know some who use another AAC app on their ipad (Speak for Yourself) are using an external bluetooth speaker, attached to the protective ipad case. Some cases also come with built in amplifier.
      I do think the newest model ipad (pro) has higher volume, but not sure about that one.

  2. My son uses an iadapter case. It amplifies it so people can hear him in public. Even comes with a strap for him to wear.

  3. Has Max talked with another person with impaired speech who uses similar technology? Although it sounds like his attitude on speech tech is evolving nicely, it might help further to connect with an older mentor who makes successful use of speech technology.

  4. This is really embarrassing to admit, but I'm uncomfortable engaging in conversations with people who have impaired speech, because I feel that if I don't understand them, it'll make them feel bad or embarrass them (I feel the same with ppl with really heavy accents, too). I know this is on me, and I'd really like to fix it. I'm hoping you can offer some suggestions as to what to say back to someone when it's really difficult to understand someone's speech (if they aren't using/don't have a speech device)? Asking them to repeat themselves over and over or pretending you understand what they're saying when you don't aren't effective, obviously. Yes, I can just offer a comment, "I like your shoes!" but what if there's more conversation to be said? I'd really appreciate hearing your feedback. (BTW I'm introverted, shy and have social anxiety, so talking with ANYONE is often challenging for me regardless the situation. But I'm continuing to work at it!)


Thanks for sharing!

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