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?

Genetics, Environment, and Statistics, Oh My

 A short walk down Blame Me Ln.

A good friend sent an article to me recently, actually she sent it two weeks ago, via email, and like the great friend that I am, I didn't respond! It wasn't because I was too busy, it isn't that I am not interested, it isn't even that I wanted to ignore her, the fact that she sought out this article and took time out of her work day to send it to me, means more than she probably realizes. What she doesn't know, what no one really knows is that I don't want to address the underlying meaning of the article (or my interpretation of the article at least).

The beef of the article is that there is increased evidence that the environment may have a much larger contribution to the rise of Autism Spectrum Disorder diagnosis', than we previously believed. The article, as I interpret it, implicates me as the direct cause of my son's diagnosis. By exposing myself to air pollution, pesticides, even iron, I may have unknowingly played a role in C's diagnosis. I have spent the last two years avoiding this concept. I know that if I even take a short stroll down Blame Me Ln., I am sure to find myself coming back to visit. Maybe just a few short visits at first, but I know that part of me longs to stay, and let's be honest, there is nothing good down that Lane.

Now in saying I don't wish to allow myself to be blamed for whatever I may have exposed myself, and my then, unborn baby to, it does not mean that I am not a full believer that there must be something environmental sparking the surge in Autism Diagnosis' in the last decade. Absolutely there is more information, more awareness, more early intervention, and that may contribute to a percentage of the rise in cases diagnosed, but we would be fools to believe that 20 years ago doctor's were told they may never encounter a child with Autism, and now statistics show that 1 in 50 US children will be diagnosed. There has to be something going on, around us, to us, that is boosting the statistics, don't you think?

After reading this article, allowing myself to briefly feel guilty, I did a quick search on research for the cause of Autism. There were 111,000,000 results. Guess what the common theory is for the cause of Autism... a combination of genetic and environmental components. There is no definitive data that confirms the cause of Autism.

For those, who like me, try at all costs to dodge this topic of conversation simply because of my lack of real data vs. rumor mill information, the lack of a known cause can be considered both a blessing and a curse. I would love to know the cause of Autism, so that it can be prevented in the future, so that no parent has to endure the struggle that goes hand and hand with raising a child on the spectrum. At the same time, I am unsure that I would ever want to "cure" C. If we are able to completely wipe out all his symptoms, habits, tendencies, to conform him to our "norm"... I fear I would lose the essence of the child whom I so dearly adore.

So friends, I for now, will choose blissful ignorance... that is, until someone sends me down Blame Me Ln., yet again, and I take another cold hard look at the why, the what if, and maybe resolve the underlying fear of what the end of that Lane has in store for me, and for my precious family.

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

A Retrospective View Requires a Great Big Thank You

 The strongest of all warriors are these two -- Time and Patience, Leo Tolstoy War and Peace

Two years ago, almost to the day we received our diagnosis. As many of you know, every detail of that day are engrained permanently in my mind. I can still recall each of my senses, make them tangible, as if I were reliving that moment. I remember the feeling of the sweat trickling down my back as the doctor explained what Autism is and listed the various specialists I should call. I remember A and O sitting in the chairs next to the door trying hard to be patient as I tried to hear what I was being told, wishing that somehow the information could be absorbed via osmosis. I recall the smell of the room, that almost sweet, sickly sweet smell that doctor's offices always have.

How far we have come in those 2 years. It seems like an eternity ago, yet still close enough to know why we have chosen to do what we are doing. We have made sacrifices, on behalf of our entire family, hoping and praying that in the end the sacrifices will be outweighed by the lives we touch, by the depth of love, compassion and understanding we thrive on within our family unit. We certainly will never become rich, by choosing this path. We may not be able to go out on date night dinners with our friends, may not be able to take an impromptu vacation, or buy the trendiest line of clothing, but we hope to look back on all of this, from the rocking chairs on our front porch, and know in our hearts that our decision was the best for our family.

We hope to continue to reach families who have felt our loneliness,  who have felt the despair, who have heard earth shattering news from a doctor, who regardless of the diagnosis, want someone who understands on a personal level, the range of emotions they feel. We hope to be able to expand to neighboring communities and provide support to any and all who want to be included. We hope to collaborate with those who have filled their hearts with a similar mission.

My friends, this path we walk down is long, and hard. We are in it for life. Whether you have a child, a relative, a student, a friend, who is given any diagnosis, it is something that you live with, body and soul. How we move forward, how we receive the information we are given, will help us choose from the many paths laid before us. There is no need to walk down any path alone. Whether you become a part of our community for a brief period of time, or whether you become part of our legacy, you will always be a part of our family.

There is a light at the end of the tunnel. With each new day, with each new experience, we are touched by someone who makes a difference. Some days are harder than others. Some days we question the path we have chosen, and other days we see the light turn on, and suddenly we are given clarity. Even if it is just a brief moment in time, those moments are what we need to hold on to. Those moments provide the momentum to continue pushing forward, pursuing treatments, seeking answers, and providing unconditional love to those in our life who so desperately need it.

We see you, we hear you, we feel your presence. We know that our path may be the longest and the one with the most bumps, but in the end those bumps will have given us the endurance to continue our mission.

Thank you for your continued support, for your kind words, for sharing our story. Slowly we are growing, and we know that great things are on the horizon.