Tuesday, July 5, 2016

Music to my ears...

Most of you who read my blog also follow Travels with Tessie Toodles on Facebook or are my FB friends, so you already know that we've been working hard on AAC with Tess. We went every other week to Boston Children's AAC clinic in Waltham for five trials with the Tobii eye gaze device.

Tess was a Rockstar. Rock. Star.

It's one thing to know your kid is smart, but to see her really strut her stuff so to speak (a little pun there for ya) and work that device like she's been doing it for years was just amazing to see. And to hear the AAC specialist rave on and on about how thrilled she was with how well Tess took to it and how smart she is was such sweet validation for me that I could have easily cried many tears of joy. It's just that we normally don't hear so much good news in regards to Tess at any one time and I often feel like people don't necessarily believe me when I tell them how smart she is so for her to sit there and prove it, well, what can I say?  I was so beyond proud of her.

After our last appointment at the clinic we got to bring home a Tobii on loan from the hospital. Because Tess was doing so well with it, her specialist had flagged her as a priority to get one and even went so far as to take one that came back from another kid who no longer needed it and hid it in her office to be absolutely positive that Tess would get it. Have I mentioned how much I adore Tess's therapist?

The Tobii has many pages Tess can open, that then open more and more words for her. She's doing pretty well at finding them and right now, that's our main goal. For Tess to have and find words. All the words. It gets a bit frustrating at times because she's still learning how to use it all appropriately and not just get random words to speak out loud.
a Tobii like the one Tess has at home with one of the pages of words open

When we brought it home she quickly found the "I missed you.", and the "I love you.", buttons for Ellie and looked at them repeatedly to make sure Ellie fully understood how very much Tess missed her and loves her. Cuteness overload. Then I wanted a video of Tess using it with Ellie so we switched to the "simple" yes/no/I don't know page and asked Tess a few questions. This is the video of that:

We try to get Tess to use "the talker" at least once a day for a little bit. She enjoys it but it can make her tired because it is harder than you would think to only use your eyes to make selections. Also, she has this thing about not wanting me to know how truly capable she is. She just will not work as hard or as accurately for me as she will for the specialist in Boston (or basically anyone else for that matter). It's so frustrating because I KNOW what she can do because I have SEEN her do it. I don't know why this even surprises me anymore because she does this in every area of her life. Take PT for example; stand tall and weight bear for the PT but collapse for mama. Sit tall for the PT but fall back on mama and cry like it's all just too much and mama is so mean for making her do that. Like I said, frustrating.

The other thing we have come to realize with the talker is that Tess has the ability to hurt your feelings and/or be rude. Let's face it, she's never been taught what being rude or mean are because she really couldn't be all that rude or mean with no voice/words to let people know what she was really thinking. It's not like she is purposely trying to hurt anyone's feelings or be rude. I mean, she's just about the most loving and sweetest kid I've ever known but she does get to have a say now and she is making the most of it.

During PT the other day, at the end of the session after we'd gotten her back in her wheelchair, her PT didn't like the way Tess was holding her head and went to adjust it on the headrest. Tess's eyes FLEW to her talker and the next thing I know I'm hearing, "Get away from me!", and right after that, "I don't like that!". When the PT explained to Tess that she needed to adjust her head for Tess's own good Tess, without missing a beat, looked to her talker and said, "Whatever.".

WHATEVER??!! Rude!

But so damn age appropriate to say, not to mention how perfectly Tess had stated her thoughts,  that the PT and I were all but jumping for joy because....WORDS! COMMUNICATION! In Tess's world, just like in ours, words are what? POWER! Tess had the power to say, "Get away from me.". And then to explain, "I don't like that.", and to even make sure her little teenage diva self got the last word in with "Whatever".

I swear, it was like music to my ears. My nonverbal kid is talking. Well, back talking but hey,



  1. Hello Joanna. I'm new to the blog and to Tessie Toodles.

    So good to hear these social words and phrases.

    And Whatever is a good one.

    Sometimes people take "Whatever" as being submissive or passive.

    I love that the Tobii tapped the sass of Tess.

    You can still be rude/mean without words.

  2. I love that she has finally got the ability to express herself. I'll bet as she progresses, you get a bit more lip from her. She likely has a lot to talk about, (good and bad) now that she has the ability to do so. <3

  3. That's great! Love the "whatever"!!

  4. sheila@mail.postmanllc.net