When the milestones, the charts, and the sequence in development are not there for our children, parents and caregivers like us set out on our own pathway. Elisabeth's story is about searching for the X factor. The X factor that was discovered only in hindsight beginning with an emotional bond and a fleeting but tangible smile to mean "yes" and a flinch in eyebrows to mean "no."
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Monday, June 23, 2008
Smells Like Teen Spirit
This morning, I hear her crying instead of the usual slurping she does during her waking ritual.
When she was young, she would tap a button with a part of her body that activated music when she was getting too close to the rail but she doesn't do that anymore. Now, she tries to get off the bed on her own.
This morning, it's different. She's obviously very sad from a bad dream or maybe it's a gas bubble from the ungodly amount of birthday food intake from yesterday or maybe cramps or maybe constipation or maybe her back hurts. (She had two rods fused when she was 8 years old to correct the helix forming in her back.)
She's still very small for her age. She weighs under 50 pounds and barely comes up to her younger 10 year old sister's shoulder. An Xray of her feet resembles beaver paws from all the paddling she does when using her pony walker and gait trainer. If you let her transfer her weight bearing death grip hands to your wrists, she'll walk very methodically.
Her visual field is a mystery. She doesn't have a focused gaze. Her eyes wander around your face. Her communication is very simple. She uses a tech talk and a saddle switch for making choices.
Recently, we were going through some old summer clothes in her closet and recorded her switch buttons with phrases "OH! I like that!" and on the other "EWWW! I don't like that!" Next, we displayed one article of clothing at a time to let her choose. It was pretty clear after the first few pieces that she wasn't the least bit interested in sorting out her summer cloths. What 13 year old likes to clean her bedroom?
From her play stuff to the stuff she wears, we're easing into "teen hood" slowly getting rid of the "baby stuff." Her habits, preferences, or her growth chart hasn't changed much since she was 7 or 8 years old so a lot of the stuff isn't age appropriate for a 13 year old.
What has changed is her taste in music. She loves drums, guitars, and shakes her head to the rhythm of songs she really likes.
This morning, she's crying. Wailing in fact. To someone who doesn't know her, they would be panicked and on their way to a hospital but somehow I know it isn't serious. I've heard this kind of cry before. She can't tell me what it is exactly but I sense it's something internal so I massage her trunk. My voice is soothing letting her know it will be okay in a few minutes. Then I pick her up to take her to the potty where she still sits and sits and sits and sits and nothing happens.
So I give her a quick bath, dress her, and bring her out for breakfast. She's smiling again. Slurping again. And if she could talk I know what she would be asking for this morning. It would be one of the 5 leftover slices of cheesecake from her birthday.
Elisabeth is 14 today. And it smells like teen spirit.
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