Monday, December 5, 2011

My Early Christmas Present: Conversations with Lilli

All of Lilli's life, we have played guessing games, trying to figure her out. Lilli does not shake her head no. She has never nodded her head yes.

All of our "conversations" with Lilli have been one-way. We have spent her seven and a half years of life talking to her, but never with her. Signing and PECS pictures have helped us know what she wants. The Dynovox we had for a short stint was…just ok. But a conversation? Never in my wildest dreams.

There have been certain ways she has been able to tell us yes or no. Those ways have involved scratching, whining, kissing, pushing, crying, hugging, and her own special sign for yes: what I call the nose pull/sniff. It's kind of like blowing a kiss to someone, only it's…a sniff. So even though these little signs have helped a little along the way, they are not consistent, and we are the only ones who knows what they mean. She went through a few months of school before one of the therapists mentioned to me that she was scratching her hand a lot. I said, "Oh! That means 'No'! I should have told you, I'm sorry!" All that time the therapist thought Lilli just had an itchy hand.

Thanks to the ipad, this past week I was blessed to have two-way conversations with my sweet Lilli for the first time in her life.

She can now spell and type "yes" and "no." Sometimes it's like playing the game "Twenty Questions" with her, but it is so amazing. This weekend I talked to her about fun things like Christmas and her favorite things. We are still holding her arm, but it is SO obviously Lilli moving her hand to each letter.

She is also typing some words, but only ones she knows how to spell. I have to be careful how I ask her questions. I have to say, "Do you know how to spell it?" and if she doesn't, she types "No." Then we have to ask more yes or no questions until we can figure out what she is trying to type.

These moments are magical, miraculous. I will never forget this time, how the window to Lilli's world is opening up to us through her ability to type what she wants to say. If all of this has happened in just a few weeks, I can't imagine where we will be in a few months.

I have moments when I doubt. It is just so crazy, that my little girl, who has been silent all of these years, has the ability to answer the questions I have always wanted to ask her! I have tested her. I have tried different ways of making sure that yes, it is completely Lilli doing this, not me. I will ask her something and then think she won't answer. And then she does, and it is something I never thought of or expected. She is full of surprises, and my mind is just reeling with how all of this is unfolding before my very eyes.

As a former elementary school teacher, I am absolutely blown away by this whole experience. I have taught children to read and write before. Many children. The way we are teaching Lilli to read and spell words is completely backwards. There is no "word wall," no phonics, no "sound it out," no "word families." We are not using a dictionary or rhyming words. We - the teacher, ABA therapist, and I - are showing her pictures of objects and people and helping her type the word for it. She is basically memorizing how to spell each word. Or maybe she has a photographic memory and is just remembering what each word looks like. But we have found that by doing this, she is learning how to read and spell. She understands the sounds of words and the letters that make up the sounds. She is typing some words phonetically. For example today we were watching an old Muppets Show video. I pointed at the screen and said "Do you know what his name is?" She typed "F-a-z-z," and then hesitated. It was Fozzie Bear. Well, it totally sounds like "Fazz – ie" and she did not know how to type the "ee" ending sound. Or maybe she just thought that the two "z"s were pronounced separately, for "Faz – z." I cannot count how many times this has happened in the past two weeks. Since the night of the symphony, I started to ask her questions on the ipad, and she has been typing answers! I now know what she wants for Christmas ("elmo"), what her favorite color is, ("gree") and that she does not like cold weather or "ic" (ice). Yesterday we had conversations about her seizures, Christmas, school, and Jesus. It was like having a conversation with any young child. I would say some things and then ask her a simple question with a yes or no answer. Every once in awhile I would ask her a question to see if she could spell a word. When I asked her if she wanted to know anything about her seizures, she typed "wh." I guessed that was for the word "why."

It has been miraculous to see Lilli transform before my eyes from a frustrated, non-verbal child into a child who can calmly type to me what she is thinking. If she can spell it, that is. I have been praying for years that Lilli would be able to speak. Well, this is close enough for me right now. I still believe that she will. Until that day, we can still have a conversation without her scratching me or crying. It is a miracle. And that is better than any Christmas present that I can dream of.




1 comment:

  1. Oh, Jennie, how very wonderful and amazing for all of you!