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.

labels

I read an article recently that blamed the skyrocketing number of diagnoses of Autism on the fact that ‘many parents actually seek the label because it opens the door to services, especially in the public schools, that they might not otherwise be able to access.’ It bothered me when I read it, but weeks later, I find it still festering somewhere in my being, eating away at me. For heavens sake, I want to shout, are these people serious?

 

 

As the parents of an autistic child, we spend so much time trying to digest the label, understand the label, avoid the label – trying to get over, around, and through the label, to God willing find a way to some day no longer meet the criteria for the label. The label represents everything we don’t want for our children.

 

 

We live our lives in fear of the reaction to the label, creating secret communities of support for ourselves and our children, contorting ourselves to avoid the discrimination that comes with the label. We torment ourselves knowing full well that we need to promote awareness to foster support and understanding while struggling with the indisputable fact that both children and their parents can be cruel in the face of that which they don’t understand. 

 

 

We struggle to reconcile our desire to work for the good of all children with Autism by identifying our own, thereby de-mystifying the label, and the knowledge that we are putting our own children at risk by outing them into a world that is not always ready to receive them.

 

Matt and I have made the agonizing decision to speak publicly on behalf of our daughter and others with Autism. In the midst of a fiscal crisis, our town, like so many others around the nation, began to debate what to cut out of our school’s budget. Many of the services that are so vital to Kendall’s success were on the line.

 

 I chose to speak before the town board, the school board, the superintendent, and others when it felt to us like it was no longer a choice. Matt and I decided that there was no way to stand by silently when Kendall’s access to education, to interaction, to a quality life, were at risk. However, not everyone can make that decision.

 

The day after my first speech, which was televised on a small town station that I thought no one would actually watch, I was shocked when I got to work. My inbox was flooded with incredibly emotional private e-mails from people that in many cases I’d never met. They thanked me for speaking out and offered their support. It was amazing to me to find out just how many people there were in the shadows who struggled just as we do with finding a way to protect their children while living in the same fear of publicly labeling those kids.

 

I understand the need to find reasons for the confounding epidemic that is Autism, and I am grateful for those who put their time and talents toward that end. But I respectfully ask those who would point the finger at parents looking for a key to support services to look elsewhere.