Monday, September 16, 2013

Part Two...Learning Her Language

"How many signs do you think she knows now? A couple dozen?"
 
A good friend asked when we finally were able to get together after several months of crazy summertime life.
 
"Probably close to two hundred, if not more, actually."
 
Wow! Even I am astounded by her amazing capacity to see and remember so many signs. Even when she can't yet fully perform them.
 
Long before she lost her spoken words, I had taught her several basic signs. More, please, eat, all done.
 
Right about the time that it was clear that her words were not making their way back of their own accord just yet, my sister loaned us a baby sign language video.
 
It quickly became Kit's favorite, and though it took her several weeks to start to use the signs herself, when we used them, she clearly understood and would smile in agreement, or shake her head if it was not to her liking.
 
To my grateful surprise, our local library also had both seasons of an ASL (American Sign Language) vocabulary series called "Signing Time". Over the last six months we have had at least five of these DVDs out at all times. And whenever there is a word that we haven't learned yet, but need, we look it up online. As a family, we have all gradually learned, literally, more signs than we can count. And Kit understands them all.
 
Seeing Kit sign, is like watching a campfire. It is beautiful, warm, inspiring, and alive! She glows when she signs, sometimes you could swear that she even sends off sparks!
 
Her fingers are tiny, and she struggles to control and manipulate them. She uses a fist when she signs yellow and play, because she can't extend her pinky by itself yet.
 
 
Yellow!

 
But as soon as she discovered that signs meant words, her whole world lit up! She could ask for things. She could identify, classify, agree or object. She could tell us stories of events that happened and what she saw! She could be silly in a totally different way! I saw her spirit brighten, and she was happy!
 
I also noticed that she was more compliant, more willing when we asked her with both sign and speech, than just with speech alone. In fact, I discovered that in some instances, she preferred me to only sign.
 
She blew me away the day I discovered that she knew all the colors when I asked her using ASL. Any color I asked she would point to.  And she signs a large number of letters when she sees them in her books.
 

Signing Red!
 
 
For several months, she used a relatively small number of daily living signs. During this time she very slowly began also saying some words again. We were relieved when "dada" resurfaced. And absolutely melted when she would excitedly expel a garbled, but identifiable "I love you."
 
For months though, her speech was still very limited, maybe six or seven regulars, and then those that she used more occasionally. But her pronunciation had not recovered. It was difficult to understand her a lot of the time.
 
Then one day, she suddenly started using a whole slew of signs that she hadn't previously personally used much. Everyday for over a week, more and more signs, I couldn't believe how much she knew without prompting or having just watched a video!
 
And then, out of the blue, came the words! "Lellow, purple, bike, play, eat, no, (s)wing, (s)top!, cat..."
 
They tumbled out as she signed, with nearly perfect pronunciation a large part of the time. Everyday we hear more, and different ones. Though they don't always stick around for long.
 
All of a sudden, it seemed.  But it wasn't really. All this time her brain has been working furiously, trying to sort, organize, and open the pathways for her to get out of her mouth, what she has in her head and heart.
 
It has long been understood that whole body movement and gross motor skills can stimulate and facilitate speech, though the exact mechanics are still more of a mystery. And I have no doubt that the physical and visual nature of signing gave Kit's mind exactly what it needed to organize itself in order to command speech.
 
I am no expert, and I have no other experience in this department. I have no way of knowing if this would help or enhance the abilities of any other child dealing with similar issues. But I do know that it has helped us.
 
She still struggles with speech. I can tell that the words that flowed so easily yesterday, are simply not coming today. She engages in echolalia frequently. That is repeating, sometimes over and over something she just heard, often without connecting the word to its application. But for now, that's ok, all babies use this form of practice speech when they are learning to talk. She might be doing it more intensively, and more often than most, but we are happy to work with it.
 
I went through a period of time where I wasn't sure that she was going to speak beyond just a few basic words. I didn't think she would be non-verbal forever, but I couldn't be certain how long, or to what extent she might learn to verbalize her thoughts, and needs. It was a sad and scary place to be.
 
But, Victor and I were both determined to do whatever we could to help her communicate as much as she possibly could. And if that was through signing, then we were here to learn it with her, though we are far from fluent.
 
From a medical standpoint, Kit has not suffered any technical speech delay. And we have many ways yet to see which areas her autism is going to challenge us. But it was ASL, in a way, that even lead us to a diagnosis.
 
It was after one of Zak's appointments, that Dr. N was chatting with Zak and I, when he told her that he had learned the alphabet in sign language.
 
After he showed her, she asked if he was learning it for school.
 
"No, my sister can't really talk, so we have a bunch of videos that we are using to teach her to use sign language. She knows a lot of signs now!"
 
Dr. N sat down next to me, and offered to see Kit, and see what, if anything, she could do to help. (She had previously recommended we look into Early Intervention first, since she didn't typically see kids until they were closer to six or so. But Kit didn't qualify for E.I. because she wasn't "significantly delayed" in at least two areas.)
 
I don't remember if I actually hugged her, but I know I felt like it!
 
Less than a month later, Victor and I ran down our long list of concerns, and upon leaving, had a diagnosis of Autism Spectrum Disorder, and a referral for Early Intervention.
 
Maybe, if we had never taught her signs, she would have been so frustrated and anxious that she would have continued to regress, thus qualifying for Early Intervention that way. But what an awful price for her to pay along the way to getting "help". Even if that "help" would have happened a little sooner.
 
No thanks. I prefer to see her sparkle! And I love to feel her shine!
 
 
B for Brown!

 
Someday we may get through the day without ASL. And that will be where we are then, though it will be a tad bittersweet. But I don't dwell on that much. Because, right now, this is where we are, today. And this is what we do with her. For her. Because of her.
 
And because, right now, on the days when her mouth just can't form the words or all that comes out is garbled, she is far from speechless. Oh no, for in many ways, her first language is that which she found in her precious, perfect, powerful...
 
hands.
  

2 comments:

  1. Inspiring and heart-warming. So exciting for all of us! :-)

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  2. I loved it!
    well written and extremely helpful for all of us with or without that situation.
    :) great pictures as always

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