Some thoughts

I have school photos of our two children on my desk in my studio, both are smiling, their blonde hair, much lighter than it is now.  Emma, like her older neurotypical brother, Nic, is looking directly at the camera.  Her two front baby teeth are missing, the adult teeth yet to show themselves.  It is one of the rare photos from that age when she was just five where she is looking at the camera.  I have spent hours staring at that photograph, as though if I looked long enough, some part of her mind will reveal itself to me.

I try to apply logic or project my own emotions onto Emma in explanation of her behavior and find I am wrong time and time again.  When I look at Emma’s brain scans and see the lack of symmetry, the bright colors, which should be dark, like a strange Rorschach test gone wildly awry, I try to detect patterns.  I try to make sense of what I’m seeing, but cannot.

“Emma’s brain is not like ours,” I remind my son, Nic in times of upset.  She does not think as we do.  She is decidedly “other.”  I feel as though I am a perpetual intruder in her life.  At times welcome, just as often not.

The stem cell treatments, like the myriad treatments that came before may not help her in the end.  Or they may not help her to the degree we would like.  Emma may not progress enough to allow her to live an independent life.  But I do not want to look back on these years and feel regret.  Regret we might have done more.  So we continue to wait and watch.

And while we do so, we work on her handwriting, her receptive skills, sequencing, her enunciation, we are teaching her to use a typewriter and we read to her.  It was suggested to us that we read books written for children that are non-fiction instead of the usual array of stories available to beginning readers.  At first I was reluctant to give up the Olivia books, which she took such pleasure in, Dr. Seuss, Go Away Big Green Monster, books Emma has been looking at and heard hundreds of times and which she continues to hear at school.  But at home out came the Learning To Read series about Pompeii, The Titanic, Dolphins, Hungry Plants, then I found other books written for children on such topics as Balto and Helen Keller.   She loves all of them.  She requests them, has asked me to read some of her favorites over again.  I am amazed.  But if I think about it, it makes perfect sense.  For a child who takes things so literally, non-fiction is a perfect fit.  The stories I am reading are for her age level and she enjoys them, which fills me with hope and happiness.

Just because Emma doesn’t process things or communicate the way we neurotypicals do, doesn’t mean she’s not intelligent.  Emma is exceedingly bright.  It’s figuring out how to tap into that intelligence in a way that speaks to her, captivates her and interests her – that’s the challenge.

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