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Sunday, May 19, 2013

iPodd, yes with TWO d's

Today's gift is iPodd....yes with TWO d's.

As I said in yesterday's post we have been training all weekend on a new way to communicate with our daughter.  The system is called PODD...and we as a team joked and call it iPodd.  She has had an Apple iPod (with one 'd'), and she loves her iPad, but now we have the iPodd!

PODD stands for Pragmatic Organization Dynamic Display. And if you are like me, you are probably wondering what does this mean.

A lot!

Let's start with breaking down what PODD stands for...
Pragmatic- the ways we use language socially
Organization- words and symbols organized in a systematic way
Dynamic Display- changing pages

The PODD system is a way of organizing whole word and symbol vocabulary in a communication book or speech generating device to provide immersion and modeling for learning.  The PODD is aimed to provide vocabulary for continuous communication all of the time, for a range of messages, across a range of topics and in multiple environments.  The PODD system is designed to be just one tool in the toolbox of communication needs.  For example, my daughter will not stop using her gestures, actual words, pointing, facial expressions; however, we will help her now to chose whichever method is most effective for each situation.




She is using a book similar to the one in the upper left hand corner...two pages.



To say she enjoyed her introduction to her new way of communicating...would be putting it lightly.  She loved it!  And actually said she "liked" it!!!!

We know she is not going to take off overnight with it and start talking tomorrow.  With everything, practice and repetition are key.  But it doesn't stop there.  We have big shoes to fill too!

We... her family, her "Anne Sullivan", her therapists, her peers...must communicate with her using it too!  The beauty of this is that she sees we are all learning this together...at the same time.  And let me just say, it is not easy.  She will see us stumble and look confused too.  But just like "Anne Sullivan" said today, "us learning this system is like us having apraxia.  It is very humbling".

She is 100% correct. It gives you a glimpse of what is must be like for my daughter.

There are rules to the book.   My daughter is not allowed to turn the pages.  She can point, but not turn. She will have book partners who know and understand the book, who will guide her through it after she makes her choices by pointing and help those who want to communicate with her.  It is not to be forced, but be used naturally.  Everything can not be asked to her in question form...but true conversational speech.  This will be extremely hard for all of us.  For 11 years we have been asking her everything in question form..for example, "do you want to do ' x'; do you want this or this for lunch; do you like this or that better, etc". We have been asking her questions and offering her choices we think she wants.

It will be difficult, but rewarding.

In order for us to understand we must talk "PODD" to each other to get a true understanding of the book and how it flows.  The better we navigate the system, the better we can help her.
What I love about it, is her freedom to tell us just about anything, we aren't expected to learn overnight and it may take her six months to a full year to start using it...consistently....and that is okay!

We start with baby steps...first week we just get in the habit of taking the book (which is waterproof!!!!) with us every place she goes to form the habit of having it.  Second week we work on the 'quick words' only on the first page.  Then week three we work on a branch...a word/thought that will link us to another page.  We will focus on one branch at a time to fully understand it and then move on to another branch.  And then before we know it we will be fluent in PODD and helping my daughter to be as well.

Tonight before we left my room to go to bed, I grabbed the book and said the following sentence all through pointing to the symbols (think of it as buttons) in her PODD book...."It's time to go to the bathroom and then we are going to go to bed".  Then like you do in PODD language I brought us back to the beginning of the book.  I looked at her and asked her if she would like to say anything before we go.  She looked intently over the two pages and I was just about to close the book, thinking she didn't have anything to say (which is OK if she does not...there will be times she doesn't...many of them...just like us), when she pointed to "I have to go to the bathroom".  I said, ok, let's go.

And she went!!!  Mom, I know you are rejoicing!!!  Not because she went to the bathroom (she has been potty trained for years), but because she purposely said she needed to go...with a voice!

But the excitement didn't stop there...for me.

Before I read to her, I put her lotion on her hands and covered them with socks to help the lotion really make her hands smooth as she has sores from wringing them so much.  After I was done, I noticed she was really looking at her hands...the socks on them...like she was really interested.  So I grabbed the book and created the sentence..."I think you feel silly having socks on your hands".  To which she said, "thank you"!

I didn't know if she was thanking me for realizing she felt silly or if she was thanking me for putting the socks on with the lotion as it makes her hands feel better or thanking me for opening up a new way for her to communicate.

As we were taught in our training, I went with the situation...the context of our immediate situation.  I said, "you probably do feel silly, but the socks will help the lotion stay on your hands and make your hands feel better."  I said this verbally...not using the PODD.

Then she touched, "thank you" again...along with other symbols.  Which is okay, as this is her way of babbling, her way of learning what everything is.  This "thank you" was her telling me she was thankful for a new voice.  I know it was!  I explained how this was new to all of us and we will help her.  As she was touching the symbols, I was reading them to her, so she would know what they all mean and what they say.  I was following her lead.

I am in awe of the FIRST day with her new PODD book....in awe!  I can't wait to see where we are in six months.  This is a commitment...a family commitment to our daughter.  If we want her to be her best and be able to communicate to us, we have to model and learn her new language with her.

This weekend we as a team came up with a little motto for her and her friends, iPodd....do you?  They didn't yesterday, but they will tomorrow!

Here are three quotes for today....

I didn't say it was going to be easy, I said it would be worth it- Author Unknown

I thought I would have to teach my daughter about the world.  It turns out I have to teach the world about my daughter- Author Unknown

This last quote was just sent to me in an email from my daughter's speech therapist saying how she is so happy to be part of a dedicated team for her....

My heart is singing this morning.  A miracle has happened!  The light of understanding has shone upon my little pupil's mind and behold, all things have changed- Anne Sullivan...the true Anne Sullivan, Helen Keller's teacher

Did I mention my daughter is truly blessed with a wonderful team!!!!???!!!


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