Evelyn's "talker"!

(As originally published via Facebook Note by Kim, 6-Apr-2010)

As requested, here is the story of how Evelyn found her voice.

Evelyn's diagnosis comes with all kinds of negatives: seizures, health challenges, developmental delays, medications, blah blah blah. But Evelyn herself comes with all kinds of positives. We always felt that she "had a lot going on in that little head of hers", but were hesitant to say or do much about it in a public manner. Our reticence was largely due to the fact that Aicardi Syndrome is associated with significant cognitive delays (aka mental retardation). So it seemed presumptuous to think that our little toddler who can't walk or talk (or sit or move very much at all independently) could think and understand.

Well, if you know Daniel and I, we didn't waste much time wringing our hands and wondering - we started testing her. Every month we go to Lekotek, a special needs toy lending library, and have been since Evelyn was about 7 months old. This was her first introduction to switches and computers. We would hold a big button in front of Evelyn, support her arm, and show her how to press the button. A wire would connect the button (switch) to a toy, and when she pushed the button the toy would dance, or sing, or make loud annoying noises. She figured that out pretty quickly, and would bang away - she became really good at this around her first birthday. Lekotek also had very simplistic computer games - push the switch and a song plays, push it again and it skips to the next song and plays it. She also became really good at that - and would even skip through four or five songs to play the same one over and over again.

We continued to use games and toys like that for a while, until we felt more of an urge for specific communication. She would cry, and I would blame it on teething, but not know for sure. Or, just to see what she wanted to do, instead of always choosing for her. That led us to the Augmented Communication Department at Children's Healthcare of Atlanta at Scottish Rite. In July of 2009 with met with a communication specialist who spent about three hours evaluating Evelyn (along with an occupational therapist) and talking with us about motivates her and what strategies we could start to use at home to elicit more communication. We came away from that meeting with a loaner 'device' and some great tips to use.

From July 2009 - October 2009 we practiced 'scanning' with Evelyn. We gave her three choices (three foods, or three toys, or three activities) and she picked. We would record "yes, that's what I want" on a switch, say each choice and she would hit the switch when she heard the one she wanted. Often we would rearrange the choices and ask her two or three times to make sure she was really understanding the concept. She understood. for real. and it was awesome. :) She loved to choose strawberry sauce or yogurt to eat, to play in her little room, and to read stories. We still weren't totally convinced, but it seemed to work, and several times temper tantrums were avoided by using the button to discover she wanted a bath (and to go to bed, not that she'd admit it) or needed orajel for a cutting tooth.

So, we went back to the communication specialist, and we ordered her device. She has a Dynavox VMax - google it to see more details (hers is pink). Basically it is a fully functioning computer, with a touch screen, and some super fancy software (though Daniel says he could totally make it himself). We plug her switch into the device, much like you might plug a mouse into your computer. We start the software, and it begins scanning through her menus: Want, Play, Go, Talking with People, Feelings, Time to Learn, About Me, My Words. It announces each category out loud, and when she hears the one she wants, she pushes her switch. Then it opens up the menu for that category and starts scanning all over again. When she hits her button, it basically talks for her. So, if she hits the switch when she hears "play" the talked will say: "I want to play".

Here's an example:

• Evelyn hits play, so it says "I want to play"
• then she hits "Computer" so it says "I want to play on the computer"
• then she hits "Read a book" so it says "I want to read a book on the computer"
• so then we load one of her books on cd (living books - google them, they're awesome)

From those main categories there are layers and layers of menus, so under "I want something" she can tell us she wants her hair done, or lip gloss, or a massage. Under feelings she can tell us if something hurts, and which body part. This device has the capacity to function at the highest level (so someone with quadriplegia could run their business with it, by using a switch or eye gaze, etc) - so basically we can program it to enable Evelyn to do just about anything. Currently she can skype people, load websites to play games, and talk to us about lots of different things.

The response time is very different than having a "normal" conversation with someone, but since getting the device in December she's done remarkably well. We love our daughter, and seeing her gain some level of independence is just amazing. It was so encouraging to set up her talker in the hospital and give her the chance to tell us how she felt. She wanted to get in her stroller and go home. Her head hurt and she was tired. She wanted to watch Tinkerbell. It's hard to hear that your child doesn't feel good, but it feels SO good to know she's able to tell us.

This has given her wings, and it is probably the greatest blessing she has received thus far.