autism in our family weekly

I don’t always know what Evelyn is thinking.  As I sit here listening to Evelyn laugh uncontrollably at a skit on Sesame Street, my heart does those little flipper floppers that I call love explosions.  I don’t know why this particular skit is so amusing to her.  And she can’t tell me with words.  And while it is enough–will always be enough–to know that Evelyn is happy at this moment, we certainly work towards finding different ways to connect with Evelyn.

If you have a typically developping child, you might notice that when she laughs, she wants to share that laughter with you or others.  She makes eye contact, she points, she tries to draw you into whatever is inducing those delicious giggles.  Evelyn very seldom does this.  When she is laughing at something, she is her own world and she doesn’t want (or not want) to share that moment with others in most cases.  Recently, I learned what I’ve noticed for the past couple of years has a term.  Joint attention.

While I work on joint attention with Evie, I have to remember to respect that we are both wonderfully unique people.  I don’t try to drag her into my neuro typical plane of thought.  I try to go to hers.  Sometimes I sit back and observe and make mental notes as to what might be amusing Evelyn–movement, color, sound, texture?  Usually, it is a mystery.  But sometimes we will notice a trend.  For instance, Evelyn seems to get her giggle on when watching rapid movement particularly on TV.  And those breakthroughs are wonderful because it gives me a point from which to start.  I can show her other things that she might think are funny.  And those moments that she looks me in the eye and laughs are indescribable because she knows that I am, for a second, laughing with her in her world.

More often, I don’t figure it out and I don’t get it.  And while your first instinct might be to think about how frustrating that might be for me, I ask you to think about Evelyn and thousands of people like her.  Thousands of people that we ask, everyday, to live in a world that they don’t understand.  We ask them to live in the ways that we live.  We ask them to interact in the ways that we interact.  We ask them to play by our rules everyday with very little thought as to what that might feel like.  I say we “ask” them but what I really should say is that we expect them.

Think of the thing that makes you crazy, nauseous, wanting to crawl out of your skin.  For me, that is nails on a chalkboard or scratching anything in general.  I go beserk.  My mother is forever scratching at things and she doesn’t understand when I go bolistic.  I have to imagine that this is how Evie lives almost every single minute of the day.

The next time you see a kid in the grocery store–with autism or not—that is screaming or throwing a fit.  I hope your first instinct will not be to judge the child as poorly behaved or judge the parent as subpar.  I ask you to consider that the lights in the grocery store are super bright.  That there are so many people, things, sounds, and smells that are stimulating–over stimulating.  That child might be experiencing a nails on the chalkboard moment.  If that child has autism, many moments of the day may be nails on the chalkboard moments.

As a mother, I am compelled to try to blend the sharp edges of my world and Evelyn’s world so that we can both function, live, love and laugh.  So that we can delight in the moments where we are able to bridge the gap between our worlds.  So that our eyes can meet and for a second we have clarity and understanding.  As a mother of a child with autism, I appeal to you as a human being.  It would be great if you could dip your toes in the waters of her world–to see the humor in the world as she sees it, to see the obstacles in the world that she faces.  I understand if you can’t find your way to her world.  But could you, pretty please, remember that she is living in a nails on the chalkboard world and that she may not be able to cope with that every second of everyday…and if you can muster it–Respect.  Respect that she brave and graceful in her ability to live outside of her comfort zone almost every single moment of her life.

2 thoughts on “autism in our family weekly

  1. Pingback: owning it | love explosions

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