Tuesday, November 11, 2014

A Life Changer

So, this week we had the pleasure of having Susan Norwell in Irving ISD.  She spent one day training staff from all over the district and one day just with Juliana and her team.  I don't really even know how to begin to describe this experience other than to start by telling you that it has changed our life. It changed the way we look at Juliana and her education.  And it changed Juliana.  It gave her a new found confidence and pride in herself that I had never seen in her before.

So prior to Susan's visit, we had chatted on the phone and she asked me where I thought she was with reading.  What level I felt she was on and we talked at length about this.  Then she asked where we were with writing.  I mentioned how we do shared writing, or we ask her what she wants to write by asking yes/no questions.  And she was like, "That's good, but where is she with independent writing?"  And I had no answer.  I wanted to say, "Don't you know she can't hold a pencil?  She has no hand use.  How do you expect her to do 'independent' writing?"  I was at a complete loss.  And this is why we needed her to come.  

So here are some valuable little gems that we learned while she was here 

1. Her computer is a communication device NOT a testing device.
We had heard this of course, and I guess I always thought of it as, don't load a test onto it and expect her to take a test on it.  That sort of thing.  So we never did that.  We understood that is should always be available for her to share her thoughts or say what she wants to say.  But we were still doing it.  All of us, at school, at home at therapy.  We didn't load a test on there, but we did get it to a page (for example numbers) and then say find the number 9, or tell me how many in this set? or Tell me what animal you saw in the story?  So really it was still a test.  No wonder she didn't want to use her computer any more.  She was associating her device with having to answer a question that could be wrong.  

2. Low Tech is sometimes a better option.
I think after we acquired this very expensive device we felt like we had to use it all the time.  And don't get me wrong, Susan definitely wants her communicating on her Tobii, but it's not always the best option for what she is doing.  Sometimes low tech (white boards, index cards, your hands) are better and more efficient options.  It's quicker, you don't have to program and it leaves the Tobii free for communication and opinions, questions, requests etc.

3. Apraxia is real and Juliana has it pretty severely.
We have always known about apraxia, but I don't think I ever really really understood it.  Nor did I ever think that Juliana has SEVERE apraxia.  To wrap your brain around this is like imagining you have sever anxiety to the point that you can no longer control your body.  So someone asks you to do something, and your brain wants to respond and your body is frozen and completely unwilling to function.  How does that feel?  And how do we typically react when someone doesn't do what we ask.  We continue to ask, or ask louder or put more pressure.  Well guess what......what do you think this does to the apraxia.  It certainly doesn't help it.

So Susan has several low tech flip books.  One of them has high frequency words (I, you, want, the etc) and one is a letter flip book.  After only 3 days of knowing Juliana, Susan got her to write - INDEPENDENTLY!  I almost cried!  Ok, who am I kidding, I bawled all day long.  This is how it went down:

Susan - Juliana, look around.  Do you see?  Everyone is writing right now.  We need to get you writing too.  Just like everyone else.  

So Susan modeled how the books worked and then they were off.  Juliana chose I, on, am - from the high frequency word flip book.  Then she indicated that she needed the alphabet book.  She chose /G/ then space then /t/ /i/ /r/ /e/ /d/  I was not there, but Susan said she got the first part done quickly and by the time she got to the /r/, she was exhausted.  This is all work for her.  She is fighting the apraxia constantly.  So Susan talked her through and said, "Look.  I know this is hard work.  Let's just finish this and then we can take a break." And then after that very quickly she went to /e/ and /d/ as if to say "Yes! I want a break!"  So Susan proceeds to "Ok, now we need to edit your writing.  Let's see.  You wrote 'I'.  Did you want to keep that? or Did you mean to write I?" Juliana said yes.  "What about 'on'.  Did you mean to write on?" Juliana said no.  So they cross it out.  They proceed to do this with every part.  And this is what they ended up with.

My daughter WROTE that!  And then shortly after she conked out and took a 15 min power nap.  The possibilities that this opens are endless.  For Juliana to be able to write what she thinks, without having someone anticipate - it just blows my mind.  This is HOPE!

So after this amazingly incredible day (best day ever!) I only managed to snag a few pics with Juliana and Susan.  

After school I couldn't wait to get my hands on Juliana.  I hugged her and screamed with tears in my eyes "Juliana!!!! You are a WRITER!!!!" and you would not believe the huge ear-to-ear smile she gave me!  I have NEVER seen her so proud of herself.  This visit has changed the trajectory of Juliana's education and therefore her chance at a quality life in the future.  The opportunities and quality of life that literacy will offer her. . . . .  everyone have that right.

And on a final note, if you would like more information on Susan or the methods she uses with our amazing Rett Girls you can take her courses at Rett University.  Check her out at www.rett-u.org

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