My last post referenced the book The Shape Of the Eye by George Estreich.  I am enjoying this book so much.  I have not been able to read it as I normally read a book, blasting through from start to finish.  This book has required space and time.  Part of the reason for that is how I have compartmentalized different aspects of life and emotions.  But that’s beside the point. I want to share a few quotes with you because the prose Estreich uses just grips my heart and mind; he clarifies and verbalizes the things that roll around in my mind, undefined.

On advocacy:

“…I would sit down with the new student teachers, and I would advocate for Laura. I covered Down syndrome (what it is, Laura’s health status, common misconceptions), language (Laura’s signs and fragmentary words), potty (coming along), food (fries, chips, rice, nuggets, good luck with everything else), behavior (occasionally stubborn, loves to learn, wants to belong). I talked about social challenges: that when other children pointed out that she was different, or that she couldn’t do something, the best approach was to shift the paradigm. To have Laura show some of her signs, for example. The idea was to redefine Laura as capable in some way, thus finding common ground. I also asked the student teachers to model treating Laura as ordinary. To speak to her in the same voice they used for the other children, for example, and not in the high, squeaky voice used for babies.”

On perception:

“Laura does not merely charm people; she dawns on them. In her particularity, she both opposes and exposes the composite portrait – half  li’l angel, half tragedy – that reigns in the public mind. She tends to surprise people, though usually it is after they think they know her. Teachers, friends, babysitters inevitably witness Darth Laura for the first time (polite version: “she’s feisty,” or “she does have a temper”), or shows she understands them – which bears witness to a human intelligence, complex, different, and real.”

My challenge, as the parent of a child with special needs, is exactly what is addressed in this book, these quotes – that I am always learning, that even in that position of learner, I am having to teach others and I so often wonder if I am teaching them rightly. I think I know my daughter, and yes, largely I do. But she is always teaching me things. I cannot rest, thinking I now “get” her. I know she is not just a cute, sweet, smiley girl to be a moment’s entertainment for her sweetness. As Estreich describes his own daughter, mine is complex, passionate, interesting, perceptive, different, and growing. I pray that I can keep up with her.


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