Taylor Code

“Taylor Code” is a way for her to communicate with us using simple gestures. “Yes” is stick out your tongue. “No” is shake head side to side. “I don’t know” is close your eyes.

Her improvement in answering questions using this code is amazing. She is able to explain her comfort (and discomfort) to us using a few questions. Example: Are you comfortable? No. Are your legs bothering you? No. Is your back bothering you? Yes. Do you want to be rolled over? No. Do you want to be pulled up? Yes. Problem solved!

I also asked her if she “wanted to tell or ask me something?” Yes. ‘Now what do I do?’ I thought. Getting to the point of what she wants to is a bit trickier. Here is how the conversation went:

Is it about an object or a person? Oops, that’s not yes or no question. Is it about an object? Yes. Is the object stationary, like a house? No. Is the object movable? Yes. Does the object belong to you? Yes. Is it your old car? No. Is it your… wow there are a lot of possibilities. Out of the blue I say “Is it your computer?” Yes. Eureka! What about your computer? Oops, she can’t answer that. Do you want me to get your computer? Yes. I now have the computer, do you want me to turn it on? No. Huh? Are you sure you don’t want me to turn it on? Yes. After thinking about it for a while… did you just want to know the computer is here and safe? Yes.

At first I thought this was an odd first question to ask, but considering it is probably her most valuable and useful and personal possession, it is not a bad first question. It also made me think…What would be my first question assuming that, like her, you already know that you and everyone in your family is safe?

If anyone has any experience, tips, or ideas on how to carry on conversations this way, please leave a comment.

 

12 thoughts on “Taylor Code

  1. Fabulous news! Let’s keep on hearing about all the advances and successes! I am back in Laramie with Mom and thinking about you all. Lots of love is coming your way.

  2. So good to hear the progress Taylor is making with you and Kit’s dedication and devotion.

    Wishing you peace and positive thoughts.

    Simon

    • And Inge’s. She is also a vital part of Taylor’s team. Thanks for your kind thoughts Simon.

  3. Hi Taylor and John.
    So happy to hear that Taylor is making progress,and asking for her computer.Try with photos. We love you and thinking about you everyday. Let us know if you need anything.

  4. Hey John ! This is great !
    Do you know this kind of website like http://y.20q.net/ ? (or http://en.akinator.com/ ?)
    It’s a kind of a game, but it is made to find what people have in mind with the minimal set of questions. These sites are pretty old, but it does work most of the time.
    You may have to a
    Hope that can help !
    Cheers,
    JB

    • You may have to adjust with the tertiary Taylor’s answering mode.

      I am also sure that you’ve heard about the strategy used by the guy who wrote when he was “locked-in” a entire book : The Diving Bell and the Butterfly.

      Best,

      JB

  5. Hi! This is so exciting! I’m thrilled to hear that Taylor is in such a vibrant and supportive environment that is encouraging her to do so much. It sounds like there has been a lot of effort to understand Taylor across many domains, meet her right where she is, and to challenge her in many types of rehab. Taylor’s strides over the past few days are truly cause for celebration!

    I’m sure that there are many resources for facilitating communication within the hospital, so you will likely receive a great deal of information on this topic soon. In the meantime, there are a number of resources that can be helpful. Here is an article published for critical care nurses, focusing on promoting communication for patients receiving mechanical ventilation or with tracheostomies — I found pages 7-9 to be really helpful in terms of review of guidelines for validating nonverbal responses and explanation of communication boards and other augmentative communication strategies: http://ccn.aacnjournals.org/content/early/2010/08/31/ccn2010728.full.pdf

    Communication boards (containing pictures, common hospital-related topics, common phrases such as “I’m tired” or “I’d like …”, rating scales for pain or anxiety, letters for spelling out unstructured messages) can be very useful for folks who are able to understand a great deal but are having trouble with verbal communication or language (aphasia). This website contains a number of boards along these lines:(http://www.amyspeechlanguagetherapy.com/communication-boards.html) and you will be able to find many others using search terms like “aphasia communication board printable”.

    Amazing work, Taylor!

  6. Thanks again for keeping us so up to date. I (and I’m sure many others) check in frequently for updates. It’s become a new source of hope and inspiration. (Btw that plane looked pretty fancy.) WE LOVE YOU TAYLOR!!!

  7. John, you are doing such a good job, as is Kit. Under unimaginably difficult circumstances, you remain logical and composed. Taylor already is so much better on account of her parents’ devotion and skill. I’ll keep the prayers going.

  8. Wow! Taylor is presenting the power of positive thinking. Love, prayers and positivity have amazing healing powers. Continued prayers and love for you all.
    Taylor is amazing!