the gift of perspective

April is Autism Awareness month. Have you heard? What a wonderful thing it is to raise awareness, to educate the world about our children and to hopefully foster some understanding and compassion.

CNN is running articles every day, Autism Speaks is holding auctions, teach-ins, world wide web walks ~ what a glorious thing awareness is! and what a double edged sword for the (already emotional) Mom of an autistic child with caring friends and family who lovingly send ‘have you seen this?’ e-mails all day long.

One of those though, brought an unexpected gift. An article on CNN, called ‘Asperger’s: My life as an Earthbound Alien’ was written in the first person by a CNN manager who was recently diagnosed with AS, at the age of 48. The last line of the article reads as follows:

“I could tell you so much more, but instead let me share one last insight. Don’t pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for ‘normalcy’.”

~ See the article in its entirety here: http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html

I always feel so privileged to get glimpses into the minds and hearts of people that have lived through this. When someone says, ‘I wouldn’t change it for the world’ .. Gosh, what an amazing reminder that every bit of this struggle (both real and perceived) is SUBJECT TO PERCEPTION. Which, quite frankly, doesn’t make it any easier, but helps so much to inform the way we choose to parent these wonderful children.

I find parenting to  be my most enormous daily challenge that has the greatest reward (kinda like the peace corps … the toughest job you’ll ever love) but also one that leaves me vulnerable and insecure ALL the time.  I feel like we spend so much time trying to walk the line between ‘changing’ our kids to fit into ‘our’ world  and trying to figure out how to teach the world to change to accommodate them. Which task is less daunting? Is either worthwhile or remotely achievable? Will either ultimately lead to a sense of comfort and happiness for my child?

I have come to the conclusion that the answers to those questions, if they exist, are not absolute. They are necessarily mailable, and against every bit of my nature, they force me to embrace an open-ended and undetermined path. But I don’t think that the fact that their answers are ever changing makes the pursuit of them any less valid or helpful. I believe down to the soles of my feet that we have to keep searching for the right balance, tweaking the dosages of changing them and changing us in order to be the best parents, advocates and teachers that we can be for our kids.

Above all, I am so grateful to those people who are able to let us into the world of our children’s minds, especially when they remind us of the wonderful gift that they have been given.

On this note, I was sent this wonderful new publication, aptly called Glimpse. In it is an amazing article by Michael Moon, a young man with autism, that echoes the sentiment of the CNN manager. His writing is moving and hopeful and incredibly, torturously beautiful. He describes himself as being “blessed with living on the edge of two worlds. One foot in the sensory internal overload of autism and one foot in the ‘normal’ world.” 

He talks about the gift of hyper “sensitivity to sensory stimulation and the detail within it.” In describing the experience of seeing a water fountain with a friend he says,

“It turned out all she could see was the fountain; she’d taken it in and was ready to move on to the next sight. I hadn’t finished looking at the fountain yet because, to my vision, the fountain was a collection of dancing interlocking patterns that each needed attention. Though it took me much longer to take in that fountain, I realized that the richness I experienced was so much deeper than most people ever see. I began showing her the textures in the water, the way you could see the individual water drops held in mid air sparkling in the light, the unusual colors blended in the pool .. endless vignettes that to me were huge and visceral and to her were just a fountain.”

Read the essay in it’s entirety on pages 8-10 of the following:

 http://www.icdl.com/bookstore/glimpse/documents/GLIMPSE-1308.pdf   

OK, time to lighten things up! If the above was Tolstoy, let’s throw a little Grisham in the mix ..  Grab Tracy Lawrence’s album Strong and blast the first track, a song called ‘It’s all how you look at it.’ The chorus goes ‘I guess it’s all how you look at it. You might see more than the side that you’re seeing. Turn it upside down and shake it up a bit. It could be a good thing. It’s all how you look at it.’

http://www.amazon.com/Strong-Tracy-Lawrence/dp/B0001MMG8G/ref=sr_1_1?ie=UTF8&s=music&qid=1207075900&sr=1-1

Every challenge is an opportunity, every defeat is a chance to learn, every difference is a gift to be celebrated.  So, rather than choosing to curl up and hide under my desk as the news goes by this month (as appealing as that may be at times), I’ve decided to find the morsels of beauty in it. Because it really is all how you look at it.

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One thought on “the gift of perspective

  1. I agree with this. I am actually using my own perspective with AS and educate (along with research) my OT peers about autism from how someone like myself sees autism. The number of OT practitioners and students with autism are not that many… as you can imagine the demands of someone working in that profession. Meanwhile, out of these OT practitioners (including myself), I have heard that I am by far the most outspoken about autism. I probably am the first person with autism ever to get an OT doctorate degree of any kind in the world in less than a year.

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