Monday, April 2, 2012

Blue Monday.

Well, today is light it up blue day!

This is my first year as an "Autism Mom." I'm still getting used to that phrase, and my family is still learning our way around, but I find myself today proud as can be of my son, Ryan, our family and all we've overcome since Ryan's new journey began back in September, 2011. There have been ups and downs since then, moments when I wasn't sure we would make it through all of the changes, but it is April 2nd, World Autism Awareness Day, and here we stand, stronger in so many ways, than we've ever been.

One thing I'm learning about Autism, is that there is no right or wrong way of living with it. From day one we were told, "YOU are the best advocates that your child will ever have." I want to thank someone here and now. I am stronger, and more vocal in raising support for Autism research and understanding, IN VERY LARGE PART because of Laurel Collins, Ryan's Advocate during OUR path of discovery. Laurel gave us the tools to help our son succeed, to help us grow as champions for our son. We would NEVER have grown so quickly, and Ryan would NEVER have received all that his school system gave to him, without all of Laurel's help. I will never be able to thank her enough for that.

I'm so much more secure of myself as a person and parent now, than I was on December 2, 2011, the day we got Ryan's official diagnosis of Autistic Disorder. That day was mired in regret-that we dropped the ball on our son, fear- that others would be "mean" to him, or not give him a chance, anger- feeling let down so badly by so many that should have have my son's best interests at heart, and doubt- that we would be able to do right by our little boy. I pictured Ryan's beautiful, smiling face and cried, BUT the only feeling that I NEVER HAD was SHAME IN MY SON. With all the uncertainty, wondering about the road ahead, I have never, from the day I first saw his face, doubted that Ryan could rule the world someday. This diagnosis changed NOTHING for me in that regard. My Ryan was and IS still my Ryan. If anything, We are prouder of him than ever. That day, my pride did not extend to myself. I was a bad mother. I had let him down. It took awhile for me to get over that, and feel like I could handle all of this. I'm still working on it.

TODAY, RIGHT NOW, I feel like I can handle anything. Even as we face stresses from the possibility that Ryan is having Absence Seizures, and the EEG's and MRI'S that go with it, juggling ABA'S, BCBA'S, ABCD's (I made that up) SPED Directors, teachers, Doctors, etc. etc. etc., I feel good about the path ahead and the steps that I am treading now have a much longer, more self-assured gait.

TOMORROW, I might be polar opposite of how I am today. As I said, because Ryan is so high functioning and doesn't "look the part" of an Autistic child, it becomes difficult at times, to explain his behavior, particularly during an episode. I've been told, somewhat mockingly, that Autism is the new flavor of the month, like ADHD was, and have been judged for giving my son an unnecessary diagnosis. During these moments, the talons come out, and I find myself wanting to act in VERY NOT Christian ways (not that I'm much of a good Christian to begin with...) and fight my own emotions (as most friends will tell you, I can't NOT cry when I get upset.) to get over their ignorance.

At this moment, as I sift through remnants left behind from the "Tornado of 2011" that passed through the small town of our lives I am fortunate to find our home still standing. It's been awhile since I last posted on this blog. So much has happened that I wasn't sure where to start back up. I was afraid to speak my mind, I think. But fear is not a place I like to dwell in. I have THREE AMAZING children and a wonderful husband, and a life that is well on it's way to being GREAT. And I want to write about it! This diary is about my own path of evolution. Today's post is about Ryan, Autism, and what the merging of these two entities has taught me.

Ryan sees in black and white, but loves with a heart that is a RAINBOW of color. He lives a completely authentic life. There is no malice in his heart, no ability to lie. He lives 100% in the moment. Ryan wants to be like his ABA, "Mr. Ben" and work with kids like him when he grows up. I'm not sure he even understands what growing up means. I don't think he understand what "10 minutes from now" means. But I do know he has a purpose and he WILL succeed. Through Ryan, I am learning to understand the true GIFT that is "living in the moment," free of self-doubt, the Superego and all that negative B.S. that has held ME back my entire life. He stops and smells the roses, and even though they make him sneeze, he laughs about it. He catches sight of all of the rainbows. The ability to live FULLY within his heart is a gift that Ryan is passing on to me. Just by watching him, I am learning to live life as he does.

However, I would like to note, as I visit many of the Autism network pages, and in my interactions with other parents affected by ASD, that GIFT is NOT a word that I will ever again use to describe Autism. I HAVE been guilty of this, and sincerely apologize, for inadvertently causing any other ASD parent pain. I can't imagine the hell that some of these families suffer. Every case is different. Some are high on the spectrum, like Ryan. Some can't move or speak. Some parents wonder if their child will have any quality of life whatsoever. Ryan has a great future ahead, and I KNOW how lucky we are for that!

If you are reading this, I hope that you will take some time today to visit the Autism Speaks website, and get more information. ASD is SUCH a wide spectrum, and SO worthy of understanding.

Much love to all of you,

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