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Sunday, February 22, 2009

Warrior Mama and my Direct Selection Kid

When I was pregnant a good friend of mine said, "Wait till you meet Mama Bear!" And I was like, "Who?"  And he chuckled knowingly and said, "Oh, you'll recognize her when you see her."

He was so right. There's no one or thing I will fight for like my child. All Mama's out there know what I am talking about. And not to slight the Dads, because there are certainly Papa Bears too.

You know from the last posts that we have been struggling with figuring out what Ellie can use to help her communicate. I have been VERY frustrated with one of the specialists at the school who is the gate keeper to technology for Ellie and the same person who has been shunting Ellie down a direction that has felt like the wrong way to go but I didn't know why. It wasn't until Friday when the outside specialist came to observe Ellie that I could put words to why. But wow what a relief to finally have the words to put behind my nagging yet previously unfocused conviction.

To back up just a tad, the school has been working with Ellie to figure out what technology would be best for her, and this regard they are getting a lot of it right. We are really happy with the work going on in speech and OT and regarding the use of symbols and just the shear creative variety they are using to approach it all. 

But there is one area that has been keeping me up at night. Early on last September Ellie got to try "Intellikeys" a couple of times at best. At that time the specialist working with Ellie was new (to Ellie) using new material in a new room, etc. See that word "new".   Putting  "new" in front of Ellie is like throwing down the gauntlet and is the thing that makes Ellie decide she is going to resist until it's not new. I always try to mix the familiar with the "new" so that she overcomes that hurdle more quickly, kind of like hiding the peas in the mash potatoes. 

In January, I had asked this specialist about the strategy again and she told me that Ellie couldn't manage Intellikeys and that Ellie would probably use a number of ways to communicate, like finger spelling, signing, and switches.  She then back paddled and said that she wasn't saying that Ellie would never be able to use it... 

This did NOT sit well with me. 

She also told me that she tried her on Intellikeys because of what she was told Ellie could do and that Ellie did not demonstrate that. See my comments on New - which this specialist didn't realize. When I told her about that monster named New, she looked away and checked the time and then just stared at me. I realized she was not interested in any data from me, "the over compensating, unrealistic parent figure".   That's so old school. I hate it when teachers take the "I'm and expert and have nothing to learn from you, oh bothersome parent" approach, which effectively shuts the parent out. Which, of course, in my world is a critical error. 

Mama Bear has been raging inside me ever since, but with no words and only a feeling that this approach was wrong. The bar, by this person, was set low on Ellie. All the stuff she is doing at home doesn't relate to what is happening at school - at least when it comes to accessing the computer.  

In the mean time, Dave got Ellie an adapted key board for the lap top she inherited. Her very first time on it,  she proceeded to try out every single key to see what each one would do. She ended up discovering  7 keys that we didn't know about.  This wasn't a perfect set up but it was something.

Finally on Friday I got an Assistive Technology guru in our home to check out what Ellie can do and to try her on Intellikeys when I was present so I could provide the familiar to ease the New.   Ellie was able to flip through a familiar story and learned 4 new keys there and then (though until we put a familiar story to use the keys on, she would have nothing to do with it).  

The upshot of the meeting was a few really important things:

#1. Ellie is a Direct Selection kid - meaning she likes to push buttons.  Direct Selection  - no kidding?! I looked around our house at all of Ellie's toys and noticed that they are all about pushing different buttons in different sequences to make stuff happen.  She had been "declaring" herself, as Dynio used to say, for a very long time.


The specialist also observed that Ellie had memorized the buttons on her keyboard so that she could use them without looking at them.  Ellie had memorized the keys so that she would not have to refocus her eyes from key board to screen because that is really hard for her due to her hypotonia.  This also explains why asking her to scan images using a switch is going to be harder on Ellie than having her directly select what she wants via a keyboard. She will still have to do some scanning but providing her with choices that are laid out before her that she can use her thumbs to access make sense for her. That is what she has been doing her whole life! 

#2. Strategy. We finally have a strategy that makes sense to me versus the "we'll see what she does" and try to force fit her into someone else's view of her regardless of who she is. It's really amazing how people don't allow themselves to see Ellie when she is right there in front of them. People have so many filters about what a kid in a wheelchair who drools can and can not do they forget to see them as they are. 

This new strategy focuses on Ellie's strengths - the use of her thumbs, her curiosity about how things work and manipulating things via buttons. She navigated the Intellikeys easily.  It was clear to me that Ellie has declared herself and her preferred communication but I needed the words to make sense of it. It's not that Ellie won't sign or use other forms, but I almost feel like she was doing those things to fit in / join in with what everyone one around her is doing. She loves to learn and she loves to sign, I don't want that to go away. But signing is hard - pushing buttons takes a lot less energy. And communication for her should be suited to her to make it easier -  not harder. Switches are often the preferred device for kids without the fine motor ability that Ellie has. Ellie has great fine motor and shouldn't be limited to a two button switch where she has to rely on scanning with her eyes - which is what is hard for her. 

#3. Equipment.  Finally an answer on what equipment she needs now and some idea of where that will lead. Right now we are looking for a used Intellikeys as well as a programming language that I will write about later once I get the report from the specialists. 

Relief. Direction. Sanity. At Last.

Don't you hate it when you know someone is wrong about your child but you can't argue why because you don't have the words?