Thursday, May 28, 2015

Knowing vs. Showing

I've said it before, more than once, (and others have said it better), but I will say it again: Nonspeaking, complicated children can not be "sized up" by what they are able to communicate, demonstrate, or accomplish externally. The inner workings of children who are complicated (communicationally complicated, medically complicated, neurologically complicated, sensory-ly complicated) can't be assessed by their day-to-day expressive communication, or by success on performance tasks.

I know this is true. I am a believer.

I tell people who work with Maya "She understands everything you say, all of your body language, maybe some things that you spell aloud. She is very smart, and also unreliable. Expect that she will be challenging (in both the positive and negative meanings of the word). Sometimes she will look like she is not listening----she is always listening. You may think it's cute that she watches you as you write notes----she can read those notes, at least to some degree (and possibly "some degree" is a very large degree). Do not underestimate her."

I do not underestimate her.

I try so hard not to underestimate her.

I probably underestimate her.

I definitely, from time to time, underestimate her.

I hope that the space covered in that "to" between the "time"s is significantly large.

I don't know if it is.

Maya has had a rough few weeks. It's allergy season here in NYC, and this season is packing a punch. Maya switched from her 2 daily allergy meds (used year-round) to 4-7, depending on the day. She is tired and uncomfortable. She started an unrelated new medicine directly before allergies, and we didn't have enough time to really suss out whether that had side effects before the allergy boom hit. She is acting out at school in a big way, which is likely part medical, part influenced by her peers (a few are having a rough time as well), and part behavioral. There have been a string of no-good-very-bad days. It's challenging not to be frustrated, not to feel like she sometimes veers toward the path of most resistance. I feel that her choices have a way of alienating the people who we most need to believe in her, to fill her days with learning and happiness.

At home things are mostly unchanged. I try to model on a talker, hers or ours (I know that this is the most important thing that I can do, and I have preached about it, but I also know the reality of living-with-AAC is different than working-in-AAC, and, well . . . life). I model new words, or infrequently used words, or---more often, now---full sentences. She sometimes pays attention, sometimes pays intermittent attention, and sometimes leaves me talking to myself (literally and figuratively, it seems).

We also continue to see Maya's home SLP (H), who visits once a week and does a beautiful job of working on total communication. H is targeting full sentences more and more . . . but Maya's formation is spotty. Sometimes she creates new sentences based on an earlier model (eg: she might say She is mad because it is rainy while looking at the model He is happy because it is sunny), but more often she will wait for H to form the sentence on her own iPad, and then copy it word for word into Mini, looking back and forth between the two screens.

Maya's use of total communication is, to me, gorgeous. I can see how she chooses to use speech, AAC, gestures, intonations, and other modalities to communicate in a way that is perfectly Maya, and mostly understandable-to-me. But I worry for her. A novel communication partner (as in, someone who is not familiar with her methods of communication) won't be as patient, intuitive, or discerning as I am. And so, I push her to use AAC when I can . . . I feign ignorance (sometimes it doesn't require feigning). I say "Say that in a whole sentence" (when I can see that she has the motivation, curiosity, and energy to try). I walk the line between I-understand-you-don't-worry and You-need-to-try-harder-to-make-yourself-understood in the way that the parent of a young AAC user has to and hates to.

Her spontaneous use of Mini could be described in three ways: functional, regularly startling, and primarily telegraphic. First, I have to note that there are a good number of times when she won't use the talker. I know she wants to say something, she makes some sort of effort with speech, and then loudly balks at the idea of using the talker. (I think that sometimes it's too much of an effort, from a motoric and sensory perspective, to make it worth her while. She sometimes seems to care less about us getting to hear her thoughts than she does about not doing the work.) But when she does use it, she can say what she's trying to say---and she can also tell us to add words, or that she needs a word that isn't in there. She uses as few words as possible to get the point across (that's the telegraphic piece, for you non-speech-immersed folks) . . . like if I asked "What do you want to do today?" then she would reply list instead of make a list, or maybe playground instead of go to the playground. The regularly startling component of her AAC use centers around her impressive knowledge of the vocabulary in the device. There are well over 5,000 words in there, and she is somehow able to use words like cubicle or rough in exactly perfect contexts, leaving me to scoot closer, squinting, and say "Wait, can you show me where it says cubicle?"

The regularly startling, perfect timed productions have the general effect of expectation-raising among the people who bear witness to them. Seeing is believing, and that believing is often enough to carry them to the next episode of seeing. But I long for sentences. Spontaneous, non-formulaic sentences. First, because I know she's thinking a ton of spontaneous, interesting stuff, and I don't trust my ability to accurately fill in the gaps around her words. Second, because I need to see her inner grammar. I've spent the past months working with a few different professionals trying to get a solid look into what she knows about sentence structure, word order, verb conjugations, etc---and we've gathered no consistently reliable information (this makes it difficult to know what to focus on in speech sessions). And third, I just want to know that she can do it. I want to know that it's in there, that maybe I can ease a little worry over will-she-be-able-to-really-truly-speak-up-for-herself. I try to stay in believing, but we've been in this rough patch and a new episode of seeing would be really nice.

And on Tuesday night I saw.

Apparently Maya wasn't ready to go to sleep at bedtime on Tuesday. She spent about an hour reading, sorting, and redistributing the 20ish books currently inhabiting her bed (I checked the video monitor every so often to see if she had settled in). Suddenly I heard Mini, and while I couldn't make out what was being said there was a good 15 minutes of talking before I decided to go in and re-tuck her in. She watched me as I crossed her dark room, her face brightly illuminated by Mini's screen. She didn't dive under the covers, and she kind of angled Mini ever so slightly my way . . . an invitation. I looked at the screen and then did what can best be described as a double-take, in the style of bad sitcoms or old cartoons. In the sentence strip of her app was this*: (I added the dashes for clarity)

 Maya had fighting day--she is wrapped--hi Mommy--bad day Maya had

This is a narrative. There's a story there, written with an intended listener in mind (hi Mommy). She did, in fact, have a bad day---although this isn't fully accurate, since she wasn't "wrapped." (She craves compression, which we call squeezing or squishing or wrapping in a big hug, but none happened yesterday,) Regardless, she told a story. A story that contains 3 properly conjugated verbs, and even a verb crafted to use as an adjective (fighting day). Any person could pick this up, read it, and understand. It isn't telegraphic. There aren't gaps to fill in. She did the whole thing, without a model, spontaneously.

And there was more.

I asked her if I could see what else she had been saying, and she cheerfully replied "let's see!" which is her permission granting to open the history feature and read through what she had been upto. I could see that the previous 15 minutes had been filled with utterances that were very atypical:

1- Today is Wednesday May  This was saved in Hold That Thought, a feature that allow her to access the entire sentence with only two pushes in the future. I believe she saved it with the intention of using it in class the following day.

2- I going to speech with B   This was also saved in HTT. Her classroom rules require her to "check-out" with the teacher before she leaves, reporting where she is going and with whom. I believe this was saved with the intent to use to check out for speech.

3-Maya had better day--she has fish  Maya really wants to get new fish for her aquarium if she has some good days.

4-Jane had better speech question mark  Jane is a classmate. Maya actually included "question mark" instead of knowing how to access the ? in her keyboard . . . but she made a question, a natural one that could only be formed with inflection, and new to include punctuation that would indicate it was a question and not a sentence.

5-John had better speech question mark  John is another classmate.

These sentences were interspersed with other things---single words, activation of previously saved phrases (from HTT), a good bit of typing on the keyboard. Some of the strings of "gibberish" typing were saved, leaving me to wonder whether she was maybe alternating between the two-handed rapid-fire indiscriminate typing that she is sometimes a fan of with more purposeful one-fingered tapping. Maybe she was typing sentences that she wanted saved, too.

This production is incredible. It shows use of correct word order, proper conjugation of verbs in the present and past tenses, proper use of the HTT feature to plan ahead and save utterances for the future, use of punctuation, and use of imagination (#3).

We have never seen her use her talker like this before.

No one has ever seen her use her talker like this before.

No one knew that this was a thing she could do.

I think it's likely that the environment was her biggest ally while she was writing this. It was dark. The air conditioner was running, so she couldn't hear any household noises above its steady rumble. No one was interrupting her thoughts with conversation or demands, and she could take her time to proper target and execute the fine motor movements to effectively hit each button and build her sentences. She had very little sensory input to process, and all the time and calm that she needed to organize herself to properly produce the output that she desired.

I told her how much I loved reading her thoughts, and what great things she had to say. I talked about Jane and John and their speech sessions, and about getting fish, and about having a better day tomorrow. I tried to respond to the utterances that I saw, to make the point that I so loved hearing them, and I retucked her. I staggered out to the couch and showed Dave the picture I had taken (on my phone) of her screen. "I don't understand," he said, "She said that? By herself? Really?" I felt the same way. We opened the history file (which I had emailed to myself from Mini) and read through the other things that she had been saying, and then kind of just sat and let it all marinate.

I try, always, to presume competence. To believe that she understands, makes connections, thinks interesting complicated things, learns constantly, etc. But this incident, these sentences, have reminded me that presuming competence sometimes needs to be presuming awesomeness, presuming genius, presuming that sometimes the visible parts of a person are so far disconnected from the inner workings that you have to consciously remind yourself, frequently, to disregard what you are seeing and trust completely in something that you can't see at all. Maya tosses me reminders to believe, but nothing like this. This was like . . . imagine you had a spouse who was trying to learn to roller blade, but rather prone to taking falls, and you were holding onto hope that someday he would be able to skate without falling and would keep up with you as you skated around the park. And then you found out that after you go to bed at night he's actually in the roller derby. That's what this was like. My presumption of competence was for non-clumsy skating in public. She's got the roller derby in her.

Her output doesn't reflect her inner working. She is always, always listening and learning. She will occasionally open the window, tossing us something new to see to help us remember to believe, but our job is to keep believing regardless of the last seeing.  To presume competence always, but also to try to shift into presuming awesomeness. It's easy to presume awesomeness now, in this moment, but if we have a hard few weeks, this high will fade. On the hard days I will try to presume competence and capability and cleverness. But on the other days, I'm going to work on pushing even harder to raise my inner bar, to model amazing interesting sentences. I will work on remembering that Maya's learning doesn't look like "typical learning", it doesn't look like focus or rapt attention, it looks like sometimes attending and sometimes wandering and sometimes ignoring and sometimes rejecting, but it is learning and it is happening all the time.

I just have to believe.

random photo of my kids, included to make this post more easily pin-able

*sensitive information in Maya's utterances have been modified, while maintaining integrity of the grammatical structure and length that she produced. 


Anonymous said...

Oh wow, this brought tears to my eyes. What a fantastic moment this must have been. Well done Maya, well done Mum, you are a great team!

Anonymous said...

This is such a powerful post from a brilliantly intelligent parent. Not all parents are like you; Maya is so lucky to have you as her mom. And to the amazing Miss Maya who can have a crazy day but top it all, the world is lucky to have you!

Inspiration is contagious. Many thanks.

Anonymous said...

You are both so incredible. Of course, I teared throughout, and remembered the night when my son, now 26, was 12 and I had that moment, not as dramatic as yours, but that remains burned in my memory. I thought I had maintained my expectation of accomplishment, but apparently it had been slowly diminishing over a number of years. Then I was brought up short by an "AHA" evening (stimulated by a "neutral" outsider) and have returned to that experience many times since as a reminder.

Jenny Nowicki said...

Very inspiring! Keep believing!

Anonymous said...

She's got the roller derby in her.

Unknown said...

This is such a great post. My son who is non-verbal (and has Down syndrome) is using AAC now (he uses Dynavox Compass) and he has a couple of small breakthroughs recently and it is pretty amazing to see it happening. Every day he uses his talker more and tells us things and it's so great to see him speak his mind. I know he has so much locked up in there that he wants to say and I hope with AAC he can do just that.

Thank you!

karamille said...

This is awesomeness. :)

Unknown said...

Amazing! My Elena is very similar to your Maya. Like you, I try to presume competence, but sometimes it's hard. Even when I have moments viewing her brilliance. Thank you for the reminder that even when I don't see it, she is still awesome.