Friday, July 25, 2014

No One Knows The Words A Child Cannot Say

The disability world has its fair share of inspirational quotes. Some are actually inspiring, some are trite, and  a few are downright dangerous. The quote below (popular among some mothers of nonverbal children) falls solidly into the dangerous category.

"A mother knows the words her child cannot say."

First, this is inaccurate. While I wish that I knew the words my children could not say, that's just impossible. Come over any day this week and watch my almost-two-year-old rage against my ignorance by tantrumming loudly on the floor when I hand him the not-the-one-he-was-thinking-of toy from the too-tall-to-reach shelf. He'll be happy to point out that parents are not always accurate mindreaders. And he's only two. If I can't even predict which toy he wants when he's pointing and whining, how could I possibly predict the complex (and sometimes random) thoughts of my 6 year old, who has very limited speech? 

But more than inaccurate, there is a danger in quotes like this. This says "Mom, you've got this. Be secure in knowing that your connection to your child is stronger than language. You know what s/he can't say. Don't worry." But, well, that's clearly not true. I'm not a mindreader, and neither are you. And by sharing and promoting images like this one, we are (unintentionally, of course) spreading the idea that a) the child's thoughts are simple enough to be consistently accurately predicted and b) we shouldn't be (doggedly, enthusiastically, urgently) pursuing some sort of AAC that can provide them with a way to say exactly what they want to say, all of the time, to anyone.

So if this isn't an ideal image to share, what would be? I have a few ideas:

This is a bit more accurate:

Because it's not just about moms:

Because 80s rap enhances any meme:

In case you're not familiar with 80s rap:

This is certainly true for me:

And to include dads, too: 

And here's one if you're a really big fan of details:

For the dads, too:

And guess what, SLPs? While researching this post, I also stumbled across this dangerous saying, targeted at you and yours:

Don't worry---I made a new one for you, too:

Because the bottom line is this:

There. Much better.

Edited to add: The Facebook album of these memes also contains several others: for friends, teachers, therapists, SLPs, caregivers, ones that say "mum", and few others. 

These will be up in an album on our Facebook page, and also have their own board on Pinterest.

Thursday, July 24, 2014

They Said She Wasn't Ready (four times)

This post tells of the obstacles that we faced when we decided to pursue high tech AAC for Maya, and the ways that it has shaped her academic path. Some of it is kind of a review, but there's a great new video at the bottom, too. This relates directly to the (amazing) "Myth of AAC Pre-Requisite Skills" blog post that circulated earlier this week.

Maya and mini

My introduction to AAC came in a support group meeting (for parents of kids with special needs). I was talking about how I really didn’t know what Maya knew, or understood, and how I wish I could find a way for her to communicate. One of the moderators said “You should go see Mark, he does assistive tech” and the other nodded and agreed, and that night I went home and started researching and was blown away by the different systems and devices (and a very small number of apps) that were out there: a whole world that I didn’t know about.  

That was a kind of pre-obstacle in our path to obtaining AAC: no one told us about it. Too many parents are left on their own, with a passing suggestion or random message board encounter being their best chance at learning about AAC in the years-before-elementary school.

The first real obstacle, for us, was Maya’s age. She was 2 when we started pursuing AAC at home, 3 when we pushed for a DOE evaluation (useless) at her special needs preschool, and still 3 when the first app with truly accessible, long term language possibilities (that could work for a preschooler and grow with her through adulthood) burst onto the market.  We believed that she could handle a big system, despite the DOE evaluator’s insistence that that was the wrong choice.  Her teacher sided with us, and we decided that it was best to ignore the DOE (who had recommended a boring, static, cumbersome, only-able-to-hold-32-words device) entirely.

The second obstacle was Maya’s fine motor skills. Namely, that she had very little fine motor skills. At 6 years old, she still can’t hold a pencil correctly and write letters, or use scissors. She doesn’t have the hand strength to open a clothespin or to re-cap a marker. The idea that we wanted to put her on a dynamic screen of any type didn’t compute with the evaluators (“But how will she use this? You can see that she would have a lot of trouble hitting those buttons, or not hitting others accidentally.”). I mentioned a keyguard, which was acknowledged as possible, but the team seemed much more comfortable with the idea of starting with a few big buttons and working up to more and more (and shifting the vocabulary entirely around at each step). Apparently motor planning is a foreign concept in some circles. I was sure that if we could get our hands on the right system, we could think creatively and come up with ways to improve our direct access. (Spoiler: That’s exactly what we did, first with a glove and then a keyguard and then another keyguard.)

The third obstacle was Maya’s cognitive level. While her cognitive evaluation (which placed her in the bottom 0.4th percentile of her same-age peers) seemed laughable to us, and to her teacher, it was a clear data point for an evaluation team. And if 99.6% of three year olds are smarter than Maya, and they’ve never given a large AAC device to any three year old, then you can go ahead and bet that my kid won’t be the one breaking that streak.

Next, and perhaps most significantly (and frustratingly) came the biggest obstacle: negative behaviors. Maya is stubborn. She is willful. She is interested in doing only the things that she is really interested in doing, and it’s very difficult to coerce any sort of obedience or compliance if you are new to her (and “new to her” can mean that you starting working with her less than 6 months ago, more or less). She would not “perform” during the AAC evaluations. She would not show them what she could do (and, in a mindboggling twist, the team declined to view the extensive videos that I have of her independently using a communication book and apps). That led them to decide she wasn’t eligible for a big device with the reasoning that either she didn’t understand what they were saying enough to make sense of the device, or she wasn’t interested in it anyway.

Four big “reasons” that she wasn’t ready for high tech AAC. 

Four excuses that we ignored.

Instead of figuring out ways to clear the hurdles that they had laid before us, we walked away from their obstacle course and did it on our own.  (Not because we were heroic, but because hurdles are exhausting.)

We pursued AAC early and doggedly, because Maya had a right to say whatever was on her mind, whenever she wanted. No low tech system could provide her with that, so high tech was the only option, as I saw it. We were excited as she became able to request favorite objects, to make little jokes, to talk about the weather. We were delighted when she was able to come home from school and tell us who she played with, or what therapy she had, or what songs they sang that day.  But it wasn’t until a few months later, as we went through the “Turning 5 Process”, that we realized how fundamentally Maya’s early access to AAC was going to change her life.

“Turning 5” is the process in NYC through which children with special needs are re-evaluated and then matched with a school, and classroom, that fits the child. I am certain that without her talker, Maya would have been sent to a classroom that had very low academic expectations, and I witnessed this near-miss happen five or six times. This story, from a former blog post, describes those encounters:

During this process we were sent (by the DOE) to tour many schools, some of which requested that Maya also attend the tour.  We toured the facilities, heard about class sizes, and visited potential classrooms. The school personnel 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.  But when we returned to their offices, 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 .   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

Now Maya is 6 years old. She is starting a new year, in a new classroom, in a new school.  She is still stubborn, and the new team is slowly teasing apart what she knows and what she doesn’t know---which is, to varying degrees, a mystery to us all. Again, AAC is the game changer here, the light that helps illuminate some of her more surprising strengths. She is reading, although it’s hard to discern how much she reads, because her speech is still so amorphous. If a skeptic listened to Maya read, they could easily say “Well, that might not really be reading. I mean, I hear the starting sound, but who knows if she’s really saying the correct word? She might be saying ‘fish’ instead of ‘first.’” But when she uses her talker, it’s clear.  In this video she reads two sentences with her voice, and then I prompt her to read it with her talker, to check that she was actually reading the correct words.

She’s reading. The DOE said she was in the 0.4th cognitive percentile, and I'm sure that they would not have placed a kid in the 0.4th percentile on a track to be reading when she is five.They might not think that a kid who will lay on the floor instead of following directions is actually listening and learning, and no one would know that without the data that the talker provides.

AAC has given Maya a way to request and comment and give directions to those around her, and a way to tell me about things she sees and hears when I’m not around. And, in an unexpected (and surprisingly essential way) it’s given her the power to prove to the doubters, the nonbelievers, the skeptics and cynics and those who forget to presume competence, that a child who in unique and complicated and doesn’t always look like she’s learning may actually be quite clever, and capable of learning whatever you throw her way.

If you are new here and interested in learning more about AAC, please head over to this page, which is a great jumping off point.