Susan's Blog

Thursday, August 18, 2011

Getting There

Just finished Left Neglected by Lisa Genova.  Genova seems to be well-versed in brain disorders; I think she studied neuroscience at Harvard.  Left Neglected is about a disability called “Left Neglect” that can result from a right brain trauma, in which the patient misses seeing items on the left.  It is hard for me to imagine that, but Genova draws a believable portait of Sarah, the main character, who is badly injured in a car accident (using the cell phone while driving in the rain, let that be a warning!).  Sarah is (was) a high-powered Alpha woman prior to the accident and spends much of the book battling both her Left Neglect and also the idea of having a disability itself.  That is why I liked the book (well, it is also a fun read).

The concept of separating ones self from ones disability is something I think about a lot, especially in terms of Nat and his autism.  Sometimes I feel like autism defines him, and makes him someone who seems younger than he is, less capable, and somehow also more lovable because he bends my heart with his need.  Other times I feel like the autism is just something that gets in his way, that he operates around or through.  It clouds his mind so that he can’t see the right words.  It presses in on him when he doesn’t understand what is expected of him, and the world then seems to be going by too fast.  No, maybe that is when I love him all the more, because I can see Nat distinctly apart from autism and his supreme efforts at purely existing here — and my heart swells with pride.

There is a point in Left Neglected where Sarah crosses over into acceptance.  I don’t want to spoil the book for anyone, but when it happens it is at a moment when she feels both the most ridiculous and yet also the most free — and she feels like a cool person because of the freedom.  Even though she would never be caught dead in this particular situation before the accident.  She finally lets her freak flag fly, which is what it’s all about.

I’m still trying to get to the point where I do not care what others may think of Nat when he is deeply into his stimming.  Or what I mean is, I am trying to get to the point where I do not think anyone is judging Nat when he is deeply into his stimming.  I so often assume they are laughing at him, not getting it; but I really don’t know what their looks or smiles mean at all.  I wish I could be proud of him at all times, instead of feel the burn of embarrassment and anger (at the others).  I admired the way Sarah ultimately handles her own embarrassment and is humbled by her struggle — the way we are all humbled by life eventually.  Once we can move past our feelings of humiliation and say, “Okay, yes, okay,” the way Nat does — “Okay, yes, okay, I am flawed and parts of me are ugly.  Sigh, move on.  Or as Sarah learned when she started walking at last:  Cane-Step-Drag-Breathe.

Whatever gets you there, gets you there.


Hello Susan!
This reminded me of Dr. Jill Bolte Taylor (Harvard-trained neuroanatomist), who I was very fortunate to find while researching strokes a couple years ago (in additon to autism, my son has some other brain issues). Dr. Taylor suffered a stroke which impacted the left side of her brain. Her message is very powerful – especially when pertaining to her caregivers: “I am in here, come find me. Take responsibility for the energy you bring to me – maintain eye contact and show me you value me and will make the effort to connect to me.”

— added by Jane in Wisconsin on Friday, August 19, 2011 at 8:03 pm

My son was at the playground at the campground with his Grandparents last weekend. Some children laughed at his stim until my Mother asked them if they knew what autism was. The answer “yes” and that was the end of it.

Autism comes in many shapes and forms. Especially when it comes to those that may meet only one or 2 people in their lives another person may appear to be simply ‘strange’. Sometimes politely starting a conversation deals with the issue and people learn. Children especially don’t realize that Johnny in their class has the same diagnosis as Sammy may have in the playground…. but they know what it is when told it is the same diagnosis.

We were at my parents earlier this summer and my son ran off to the playground while I walked across the field. A man (retired) said to me “he’s happy, he’s singing to himself”. I explained that he was autistic and he was doing what was called “stimming” and it calmed him. He knew of other children with “issues” and asked a few more questions and we went on our way.

One person at a time…. that man probably went home and talked to his wife, and maybe at a function or something told others when the topic came up. Those children probably told their grandparents – most of the camp was seasonal retiries – who would then understand his flapping etc.

One person at a time…. and it spreads from there.

— added by farmwifetwo on Monday, August 22, 2011 at 8:21 am

Hi Susan, wanted to recommend a book I read recently and thoroughly enjoyed. It is called Kitchen Daughter ( maybe The Kitchen Daughter) by Jael McHenry. It is fiction. It is about a young woman who has Aspergers. She is 24 and has been living with her parents and sheltered by them her whole life and they are suddenly killed in a car accident. She has severe sensory issues that are vividly described in this book.

My son is 10 and verbal but not very. We have been practicing going to Burger King and having him order a soda. After reading this book I experienced our practice outing in a new way. As we walked into the restaurant I was hyper aware of the sounds and temperature and environment. It gave me a big reminder of how my son must see the world and how overwhelming it can be.

The book is very interesting. The main character calms herself with cooking and there are very vivid descriptions of cooking and food and smells. It was a fascinating read if you’re interested.. I am going to give Left Neglected a try. Thanks for sharing. Diana

— added by Diana on Tuesday, August 23, 2011 at 12:50 pm

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