Friday, November 15, 2013

A Call to Action or a Slap in the Face?

Is there a point where we unknowingly sacrifice one's dignity for our own sanity?

Many of you may have been following the threads and posts regarding the blog written by Suzanne Wright regarding the  "call to action", demanding a national response to make a plan for the estimated 3 million Americans that have Autism (birth to adult). If you have been following the threads, you also know that this was a direct result of the resignation of long time contributor to Autism Speaks, John Elder Robison.

I have taken a few days to read through the threads, have been cautious to not jump on one bandwagon, or the next before formulating my own opinion. And what I have realized, in waiting it out, and reading the posts and comments, is this... we all have an opinion. I have come to the conclusion that the root of both blog posts, in my opinion, are for me, truthful, heartfelt, and from a place of compassion. (Click the above names for the link to each post)

Suzanne Wright says, "These families are not living. They are existing. Breathing - yes. Eating - yes. Sleeping - maybe. Working - most definitely - 24/7."

Well here I am, in the flesh, and therefore I am living, but I see the metaphor. Am I living the life I envisioned? Well that depends upon the time-frame upon which I was asked "what do you envision for your future". 20 years ago, I knew I would be married, knew I would have a home, and a family. 15 years ago, I couldn't see past my nose, I was so wrapped up in myself and didn't know what the next day would hold. 10 years ago I was a single mom, hoping that I could recoup my previous dream of a husband, home and family. 5 years ago I envisioned a home with 3 energetic boys, growing up to be a lawyer, actor and baseball player. I envisioned 3 daughter in laws, plenty of grandchildren, and a retirement filled with travel and visiting all my grand-babies. Today, my future is full of unknowns, but I do know that I still have 3 loving and healthy boys, full of energy and potential. Beyond that, I know, from past experience, that my vision of the future will continue to change, as our lives change. I have no doubt, however, that I am living my life to the fullest potential.

I do understand the analogy, perhaps I am not living to my envisioned potential. Again, it is up to us to re-write our vision of our future. I can appreciate what she is trying to say. As parents, we fight, day in and day out for the things that many parents take for granted. And while we fight, those same parents, who take for granted the small things, seemingly judge how we parent. It is daunting, it is hard, it is tiring. I do forget to eat, I have lost sleep, I do worry endlessly about such miniscule things, that suddenly seem so large. It is hard to parent a child with Autism. It is hard to parent.

Mr. Robison based his resignation from Autism Speaks on his belief that while Autism Speaks has the perfect platform and fundraising ability to provide and advocate for those on the Spectrum, they lack the tenacity to "speak" on behalf of those with Autism. In addition, he states "we do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated." He feels the staffers at Autism Speaks need help "to understand how destructive its messages have been to the psyches of autistic people".

Again, I get it. I understand how we, as part of the "normal" population, portray those with Autism as a problem to be solved. I have many times said that I would choose C with his "quirks" over C as someone else. We walk a fine line, when we try to define our children, our loved ones who are affected by Autism. While we want to help them succeed, and function in a "normal" society, we don't want to lose the person they are, because of the condition they have been diagnosed with. How do we balance, without teetering over the edge. 

I have written, many times, that when C was diagnosed, I felt as if I lost my child. I mourned my vision of who he was, felt that his future was re-written. I mourned the parent I hoped to be, and had to persevere.


Those feelings were my initial feelings, they didn't stop there. Together, and as a family, we are working on the chapters of the book. Writing it in hopes of creating a beautiful body of the story, that depicts a life of love and happiness. With every birth, a story unfolds, and changes as circumstances change. We are fluid, and need to bend and mold to each new chapter. We need to learn from our previous chapters and use those lessons to create the proceeding story. Our book is right in front of us, waiting for us to record all that takes place. Like every book, there are tragedies and triumphs, but it is how we outline our future chapters, based on our previous writing that makes our story unique and beautiful.

We should not feel as though we need to hide the hardships, because that is what makes our story come to life... However, we do need to be open and understanding of other stories, chapters, that take place around us, unfold before us, as they too have a vital role and can intertwine with how our story continues.

Being real and true to what you feel is important in family communication, but what is more important is explaining those feelings to your loved ones, ensuring they understand the place you were in, and the lessons learned from being in that place and experiencing those emotions. 

While I understand why Mr. Robison feels resentment towards Mrs. Wright's post, I can't help but to relate to what she says. There are days where just being, in this place, in my life, is hard. It is a challenge to manage the day to day. It is a struggle to be patient, to understand the stim, to respect C's desire to do something other than what is on my agenda. I also know that this is a daily struggle for every parent. Do we make it harder on ourselves because we have a diagnosis?

Every day I remind my boys that they have a choice to make... They can choose to make it a great day, or choose to have a bad day. We control how we manipulate our feelings, however I believe we can't control how we feel in a given moment. We can choose to use our feelings to our benefit or our detriment.

At times it is hard to acknowledge how we feel and then take those feelings and make them positive, but with work, it can be done.

I can understand why some may feel that airing a parent's negative feelings on a social media site, seems incomprehensible, but I get it. It makes those feelings real, enables others to express sympathy and empathy. I also believe that when you use social media as an outlet for your feelings, you need to be aware and ready to answer the questions and backlash that will certainly come with your post.

As we continue to advocate for those with "different abilities" we also need to embrace the hardship for all affected by it. We are all being graded on a massive curve, and need to remember that our personal experience, belief, and way we handle our experiences are different from others. Just as those with Autism are on a spectrum and all require different levels of care and treatment, we as humans are on a broader spectrum, and too are in need of different levels of care and treatment. If we are asking the normal population to embrace and understand the Autism Spectrum, shouldn't we be advocating the same for ourselves?

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