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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?  


Emma said...

Yay glad Ellie is getting a way to communicate - hope the school don't put any more obstacles in the way with communication but sorry it had to come to you getting an outside person in.

It makes me mad when staff don't take concerns seriously. We had similar problems with written communication when I was about Ellie's age (well, my schoolwork really) - mum was pushing the school that she was very concerned about my handwriting - how hard i found it and how bad it was. But school kept saying it was fine (although they then admitted when she really pushed them it wasn't what they would expect) and not to worry. Next thing my parents knew was my teacher mentioning the adaptive tech. specialist had been in and I was going to learn to type my work. They hadn't been told she was coming and school basically said she'd not been in to see me but the only other kid with CP (and disability actually) and she'd spotted me and asked if i needed anything and a five minute chat with my teacher turned into the most educationally important decision of my life.

I don't think I would have done half the stuff I have if not for that.

Lexie said...

What you describe here was hands down one of the most frustrating things I encountered as a special ed teacher of kids that used augmentative communication like this.

We would have a specialist come in and do a one or two hour evaluation, in which, as you know, means that they don't really get to see what the kid can do. Then, if we fought for them to get a certain type of assistive tech, it was a huge battle and took months and months to do it. Then if we got it, the specialist wouldn't ever come around and give us enough time to teach us and the kid how to use it. Sometimes THEY wouldn't even really know how to use it well. And then it would be declared a failure since the kid didn't pick up on it right away. Well, duh. There was a sort of passing the child off as unimportant, as someone who didn't really need a huge investment in AT because what did they have to say besides the few yes/no or signs they knew? (How will we ever know unless we give them the means?) There seems to be a prejudice that these kids don't deserve the time or monetary investment that is required with augmentative communication. When I argue that it is the most important thing we can do and it is the kids who have the hardest time communicating who deserve the most time/money investment.

Anyway, glad you and Ellie are on the right track. What a difference a different expert can make! Which always proves that there is no one right answer and there really is no expert, just people with a lot of different ideas.

Jacqui said...

This must be so frustrating for you and for Ellie. I'm sorry that the person who was supposed to help was so judgemental. I'm so happy to hear that you didn't just leave it alone. You are one strong mumma bear.

Anonymous said...

wow -- so glad you kept at it! as a SpEd teacher, i love having parents like you -- parents who know what they're talking about and will fight to get it!

the intellikeys, is that all typing out words? did the aug comm tech explore things like a dynavox, which is a dynamic comm device that is symbol based. just wondering.

awesome! ellie continues to amaze me!!


Bird said...

Wow. You just answered a question for me that I didn't know I had. Charlie's vision is such a quandry to me and sometimes when I try to explain it to people I realize just how little I understand it. What you just said about Ellie having trouble re-focusing--that's Charlie to a T. He may have other issues as well, but at last I don't feel crazy for saying that he doesn't like his eyes to dialate. You put into words what I've been feeling. Thanks!

Also, glad that you are fighting for Ellie. She is bright and special and deserves it.

Ellen said...

Oh, this is awesome. You are one amazing Mama Bear.
I think there is just so much ignorance and misunderstanding out there about alternative communcation. I finally had to pull Max out of a school because at first they said he wasn't ready for a device. My answer was, "Have you even TRIED one? What's the harm in that?" Then I had to be the one to tell THEM that our state's cerebral palsy group had a lending library of devices. I am always ready to do my research, but I did not want to be the main teacher. I switched schools. Now Max uses a Dynavox. When it comes to Max, I am a grizzly bear!

I am so glad you have helped everything fall into place for Ellie.

iceehot said...

Go Mama Bear!!