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.

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.


maternalinstincts said...

Dana, I love this SO.MUCH! Your story, Maya's, could easily be ours. My son is ten and a half and we didn't get started on the road to AAC until he was the age Maya is now. Why? For the very first reason you mentioned-- NO ONE TOLD US ABOUT IT.

It infuriates me that so many professionals still believe there is a hierarchy of AAC learning which our children must master in some order before they are allowed to progress to another option.

Anonymous said...

YEp, same here: No one told us! Even though in early intervention time and time again they would say how can we help you? and I would say just let me know about all available services, therapies, ideas, strategies etc. When I figured out it existed they all pretended not to hear, not to know or just found a way to let it pass. When i formally requested it in writing: "no on is assigned to that." So I am persuing it on my own and we will see. Thank you so much for all you do and I know have SFY and I am slowly getting the hang of it.

Anonymous said...

What's frightening about this us anyone who actually bothered to watch your videos would not have been surprised at all by Maya's abilities to use a sophisticated AAC device by this age nor her ability to read. Her love of letters, her grasp of letter sounds, her phenomenal visual memory,her almost desperate desire to communicate not to mention her quick processing of directions and all spoken language ( she clearly understood and was able to respond immediately to what was being said) have been obvious in the videos you made over the years from those first letter cards where she recognized letters you had no idea she knew, to the letter wall and picture card book where she was able to keep track of where things were ( where the animal page in the book was for example) and find them with almost shocking speed. Shame on anyone evaluating your girl for not educating themselves with the best evidence of Maya's abilities

Anonymous said...

People have rights. The right to effective communication is one of them.

Anonymous said...

We were told the same thing about our daughter who had a massive stroke at age 22. They wanted to graduate her from a velcro word board to a small 6 button device for essentials like bathroom needs and i want to go to bed.I insisted we try others. They would not approve an IPAD so we ended up with a Cadillac dynavox. Tech that programmed it only worked with small very mentally disabled children. Hard drive died after only 8 weeks. We bought an Ipad and Proloque 2 go and she took off. Put her on facebook so she could see what her friends were up to and the swiping only got better. We put on lots of p reprogrammed phrases appropriate for a young adult. She is re learning how to type. Slow process with the opposite hand. I always go with let's try just never know till you do.

Unknown said...

She is brilliant!!! I don't know you or her, and have no connection to your family....but I found myself beaming with pride as I watched the video! This is so great, and YES...I hope the skeptics are going to have their socks blown off. I hope that many many more children get to access this type of tool! My daughter had and still has many doubters....she is proving them all wrong! Keep up the hard work, and enjoy every minute of your super stars progress!!!!

Erica said...

so amazing! maya is so lucky to have you as her mama! Avery could likely be doing so much more with her Accent 1200....can I rent you? :)

Anonymous said...

I really love your posts and they have been a useful guide. I'm ready for the day people tell me my child is not ready for an AAC device. However, I'm stuck wondering how you know when your child IS ready. I have a 15 month old with mod-sev cerebral palsy. She does not reach, play with things, vocalize, roll, consistently respond to sound, has cortical visual impairment, etc etc. What should I look for to know when I should start having her play with an AAC device? Would really appreciate some insight on this, and I recognize my daughter may never reach that point but still, I want to know we did all we could. Thanks!

Dana said...

Hi anonymous---

My gut says that you start now, simply because the only way to learn that a device can be a voice is to be immersed in the modeling of it. It's very similar to the way that we speak to babies for an entire year before expecting them to say their first words back, or model sign language for many months before hoping to sign a returned sign approximation.

That being said, CVI is a bit outside of my range of expertise, but I know that it presents some challenges when selecting AAC. If you want to come to the SFY users group and ask the families/therapists there about AAC selection with CVI they might have some insight. I would also check local therapeutic hospitals/CP organizations to see what sort of AT/AAC resources they might have to get you started with AAC.

Users group link: