Saturday, August 3, 2013

Perceptions Drives . . . Everything

from the smart people at www.praacticalAAC.org

Perception
Maya loses her balance and falls regularly. She walks the way a bowling ball rolls down a lane with bumpers---diagonally, occasionally veering into a wall and bouncing back to continue crookedly the other way. She seems unaware that her mouth often hangs open, which leads to drooling issues. She often has a hand or fingers in her mouth. When you speak to her, she may or may not look at you, or in your direction. If you talk to her when she is involved with something else it’s quite possible that she won’t even look up, and you’ll wonder if she’s hearing, or able to process, anything that you’re saying.  She may or may not answer yes/no questions reliably (favoring “yeah”) and so when you speak to her you wonder if she’s able to understand what you’re saying or just answering automatically.  You may know her (alleged, per her mom) favorite topics, and try to engage her in conversation, only to be met with blank, open-mouthed silence.  You may have heard that she can (allegedly, per her mom) use a fancy communication device, and you turn it on (thinking “this is way too complicated, with far too many buttons”) and put it in front of her and she looks away, and you say “tell me something with your talker” and she stares at you or slumps in her chair and smiles, teetering too close to the edge and looking sure to fall.

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When Maya is excited, she can move with speed that I never would have imagined a few years ago. I hold my breath when she runs, each unsteady step seeming sure to lead to a vicious fall, but I am impressed with the way that she usually manages to steady herself. The surge in speaking that has happened over the past 10 months tells me that she’s starting to coordinate her mouth muscles in new, wonderful ways. Maya is clever and surprisingly funny. She likes to laugh and to make people laugh and will tell “jokes” that are only funny to preschoolers (like telling us that it’s rainy on a sunny day, or telling us that she wants an alligator for dinner---each followed by a cackle). She is creative, pretending that she’s taking her dolls for a walk not to the grocery store or the doctors, but to the amusement park where they all ride roller coasters. She has a memory that consistently surprises me (if I tell her before school that she can have a cookie after school, you better believe that her first words off the bus in the afternoon are “cookie, please”). I wish I knew how her brain processes things----all too often I see her focused on something so intently that I’m nearly sure she can’t hear me at all, only to have her suddenly turn and answer my question a minute or two later  . . .  as if I were rudely interrupting earlier and now that I’ve given her some space she’ll comply and answer my question.  She has reminded me about numerous appointments that I would have forgotten (“Monday! Speech therapy!”).  She is a master manipulator, and has learned to avoid questions and demands by creating a situation that requires the adult to abandon their request and responded to her instead----like threatening to drop something important, or dangling off furniture so that she needs to be repositioned, or putting her head down and acting as if she’s so tired that she couldn’t possibly continue. She keeps us on our toes. 


Perception drives expectation
When Maya was two and a half she was evaluated by the preschool section of the DOE (among other things, these evaluations determine whether children have impairments significant enough to qualify for a center-based preschool, where all therapies would be provided on site).  Her scores qualified her for services across all domains (speech, physical therapy, etc) but one number stood out: her cognitive functioning was in the 0.04th percentile for her age. This meant that out of all 2.5 year olds, Maya was in the lowest half of a percent, cognitively speaking. Based on the data from these evaluations, it seemed that Maya was severely, severely impaired . . . a reader of these reports could expect a child that was close to vegetative. Unable to walk, unable to speak, with almost no receptive language (about 2 words), leaving her unable to understand anything said to her. The lowest of the low. She needed a therapeutic preschool, where they will hopefully be able to make some kind, any kind, of progress.

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When Maya was two and a half she was evaluated by the preschool section of the DOE, strangers who arrived with a flourish, loudly asked many questions, and then disappeared. She was shy, and her responses ranged from nervous to puzzled to noncompliant. The woman who would go on to determine her “cognitive functioning” was late, unengaging, and, well, not very good. The results come in the mail a month later, and while it’s never fun to get crappy test results, we see them for what they are (biased, ridiculous, a means to an end and nothing more).  Maya is signing, making animal sounds, playing in an imaginative way (little animals go in the barn, little people sit in chairs for a pretend birthday party, etc), and shows clear understanding of a million little things all day long. She’s got preferences and opinions, and she is determined.  She needs to go to a therapeutic preschool, where they will hopefully be able to recognize her amazing potential, and have the skills to work with a child with a sharp brain but an uncooperative body, to help her gain movement, knowledge, and the ability to communicate what’s going on in her head.


Expectation drives opportunity
Before Maya met her preschool teacher, the teacher had already met Maya. Although we didn’t have the concise, powerful sound bite that “expectation drives opportunity,” we had that understanding (Dave and I were both teachers, and we watched students rise to high expectations year after year) and we were certain to help Maya’s staff set the bar high for her. Prior to the first day of school, they received a packet of information about her, and video clips that showed some of her skills and translated her signs. We had already exchanged emails about her, and the main messages were “don’t let her trick you into thinking she doesn’t understand you---she always does” and “push her---she will keep impressing you if you keep pushing her.”  Maya had been assigned to the smallest class, the class of kids who are, by and large, the neediest of the school (that’s where those evaluations put her, and it turned out to be fortuitous, because the staff in that room was fantastic). Her teacher saw the strengths in all of the kids, and pushed. When she showed me ideas for a communication board, we ran with it at home, and turned it into a word book. The teacher embraced the word book and then supported our quest for assistive tech, despite never before having used a full, dynamic communication system in the classroom.

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When the assistive tech evaluator (L) met Maya, she didn’t expect much at all. L assigned her a low tech device, despite our insistence (and Maya’s demonstration) that she needed so much more. L said “I only give these devices to students who can show me during the course of the evaluation that they are able to use it to make sentences.” This boggled my mind, as I couldn’t imagine preschoolers picking a system up so quickly---yet I was sure that Maya could do it eventually. “How old are the kids you typically give it to?” I asked, and she replied “9 or 10, usually.  Some are a little younger.” 

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We were not willing to let L’s expectations control Maya’s opportunities, and fortunately, Maya’s teacher agreed. She kept her expectations high (and we hoisted the bar up a giant notch when we came into school with a new, huge AAC app, set the iPad on the table, and said “Yeah, we’re sure she can do this.”) . . . and because of this, we laid resources in front of Maya and let her try it all.  She had opportunities, particularly the opportunity to be pushed and supported into a large AAC system, that the majority of 3 year olds simply do not have (although I’d like to change that).   


Opportunity drives achievement
L, the assistive tech evaluator who determined that Maya should only use a simple device, had a plan for Maya. She explained that we shouldn’t overwhelm her with a system that would be too big, or too complicated . . . it would only lead to frustration for Maya, who then might reject the system and cease trying to communicate with it at all. We should start small. Maya would have a device that gave her access to 32 words at a time, a number that was small and manageable. Because the teacher could create 8 sets of 32 words, she could have a set for art, a set for lunch, etc. It might take time, but over the next year Maya would learn how to access the words, possibly even achieving some success with creating simple phrases and sentences.



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We downloaded the big, full AAC app, and we had a plan for Maya. We would present words slowly, but (because of the very smart design of the app) she would always be able to touch a button that made every single word available to her. We would model as much as we could. We wouldn’t force anything, but we would become AAC users ourselves, immersing her in it, and we would leave the door open for her to follow us through (and maybe we would nudge her along a bit, too).  Grammar, mistakes, times when she pushed the talker away, a favorite word pressed ad nauseam . . . none of it mattered if she would be able to say things that were on her mind. We so wanted to know what was on her mind. If we were painting, we wanted her to be able to say “grandpa” if she wanted to paint grandpa---not to be limited to a predetermined set of 32-words-that-someone-else-thinks-Maya-might-want-to-say-when-she’s-painting. We wanted her to have all of the words, to be able to choose her words at any moment, the same way that any other 3/4/5 year old speaking child can . . . and she did.

She told us about the weather, she counted, she spelled her name. She told us her ideas about what we should do on a given afternoon, what we should eat for dinner, what song we should sing. She told us that she loved us, and who she played with at school, and that her ear hurt (it was an ear infection), and who she wanted to Skype with.  She showed creativity, the ability to analyze information, the ability to make connections, (kind of impressive) memory, wittiness, kindness, and sarcasm.  She could communicate, truly.


Achievement drives perception
In the fall, Maya will start kindergarten and leave the security of preschool behind. To find the classroom that will be the best possible fit for her next year (the most perceptive leading to the highest expectations and granting the greatest opportunities, so to speak) we have been assessed, evaluated, and interviewed within an inch of our lives.  In recent months we were asked (by the DOE) to tour certain schools, and several requested that I bring Maya for the tour/interview.  We toured the facilities, heard about class sizes, visited potential classrooms (with Maya wandering right into the middle of the action, of course).  The school personnel had looked over her case, watched Maya boldly step into the classrooms, and smiled in a satisfied way that said yes-this-will-be-a-good-fit.  Until we returned to their offices, and I put the talker in front of Maya, then ignored her and spoke with the other adults. It only takes a minute or two of ignoring before she starts speaking up (although if you try to interrogate her she can hold onto a stubborn silence for.ev.er.) . As she tapped out a full sentence to request a snack or a drink, I could see a flicker---“oh, wait a second . . . “---and as I gently led her into more creative territory (what do you want to do today, who should go with us, what do you think we’ll see there, hold on---what day is tomorrow, again?) the flicker grew, and they were wide-eyed, surprised by this quiet girl who had tricked them.  And maybe (hopefully), surprised by their misassessment.

And, in a mere minute, a huge perception shift. In the following minutes, the comments that Maya “was too advanced” and “wouldn’t be a good cognitive fit here” and “clearly needs to be somewhere where she will be challenged” and “is full of potential, wow!”

In the space of only three minutes Maya’s achievement with AAC reshaped their perception of her as a learner which raised their expectations for her academic potential and offered her the opportunity to not be relegated to an ill-fitting, limiting classroom . . .

In a month-ish, she’ll start in a new school, with a new staff and new classmates and not a single person that she knows. And so the cycle starts again . . . and I’ll be sending over a new packet . . . because I know that my girl isn’t easy to read, and I’m going to try to shape their perception, to show them Maya that I see---manipulative, sassy, stubborn, clever, and full of potential.  



5 comments:

Shelane said...

I'm so excited for Maya, and feel so blessed to have you as a beacon to follow on this road.

Robin said...

wow, great examples of perception! Good luck for the new school year, hopefully everyone will keep up with Maya.

Emma said...

I love this post. (I am inspired by so much of what you write!)

As someone working at a school, I am still learning how to communicate the achievements I see in one setting to professionals and parents in other settings so that the expectations and opportunities can be abundant. This is something I'm thinking a lot about as we move toward September...

wiredONdevelopment@gmail.com said...

What a fantastic and inspiring story you tell. I loved reading this and love how you have been such a great advocate / parent / teacher for your beautiful daughter.

maternalinstincts said...

God, how I love this post. It should be required reading for every special educator, administrator and case manager for children like ours. Seriously.