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acceptance and making peace with Autism April 20, 2010

Posted by caizooka in autism, autism parenting.
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I’ve done a great deal of reflecting lately. Having my hand bandaged and being in an extended lethargic state of recovery, I’ve had the time to do so. There is so much to reflect upon. It seems that these times when you are forced to slow down are a blessing in disguise. I feel frustrated because there is so much to get done and I can’t so I just throw my hand(s) in the air. I’ve reflecting upon so much. I have done a lot of contemplating where I am in the raising of each child and how vastly different each of them are. Different kids, different needs. Now that my wrist has been set free of my cast from the surgery, I can type again. YAY!

I think about where I was a year ago. We had no diagnosis; just hunches and lots and lots of fear. Oliver had just been evaluated by the school district. I was a mess. Sadness wrapped in a thick layer of depression from feeling out of control and frightened. Oliver was tested at between 1 – 2% in social skills. That was devastating. I remember sitting in the parking lot of Burger Master on Aurora.  Sobbing hysterically. Not knowing what to do. Oliver sat in the backseat drinking a milkshake, spacing out, staring out the window. That was such a low point. It was so scary. I have never been in denial of where we are at with Oliver. I think that if Oliver were my only son or my oldest child, it would be a different situation. Also the fact that my mom was so good at grasping the bull by the horns always set a great precedence for us. Even though it had been a few years between kids, so there was no one to directly compare him to, I knew that Oliver was different. He wasn’t connecting the dots and jumping to the next milestone on his own. I figured that maybe different kids just progressed differently. I still cannot watch videos of him when he was younger because I don’t know what I don’t want to see. If there is obviously something there and I didn’t see it I will feel bad. If there doesn’t appear to be anything, I will feel bad that maybe we did something to cause this. I’ll get to the point where I’m ready to watch these, but I am just not ready yet.

Sometimes I want to wake up and find that this whole autism thing has washed away. Even though sometimes it’s not the most difficult thing that our family is dealing with, it is undeniably the thing that pushes us over the edge because of the amount of all encompassing worry involved. I’m learning to live with it and recognize the beauty of everything that we are granted. Even though it seems like too much at times, I have made peace with where I am. I recognize how volatile this world is and how something that I have never even heard of can invade my life tomorrow. So, I need to be okay with today. Not only do I need to be okay with it, but I have to embrace it. I think that part of embracing something is accepting its flaws and weaknesses along with it’s beauty and strength. I accept that there are going to be worse days than I’ve seen, but I also believe whole-heartedly that the best, most glorious days are yet to come.

Another large part of acceptance is giving up control. I see parents who feel as powerless in the face of autism as I do. We are courageous. I also see parents who are absolutely courageous upfront, seemingly fearless. I bow down to you and praise you for paving part of this path before us. It is downright scary at times the effects of autism has upon on a family. I don’t feel as much fear when I admit that I don’t have control of this. I can try and control Oliver’s diet, vitamins and supplements, therapies, etc, but I have to make a separation about what I am trying to control. I cannot control autism and I cannot control Oliver. My friend, A, today told me that she was reading a book about ADHD and the whole first chapter spoke of how first and foremost you must love your child for who they are.  Indeed, that is it! That is the first step in acceptance for me. Sure, I would love for autism to leave us, to free Oliver of its very intense grasp, but if not I will love him just the same. Setting aside the expectations that you have for that sweet little baby that you held so tightly when they were born and promised them that nothing would ever, ever go wrong…that takes a great deal of faith to know that it is just going to be okay.

I also reflect upon the people who have entered my life in the past year and I simply can’t believe my blessings. I have learned a great deal from the courage of people who are facing autism and life’s many other challenges. The tears we’ve shed, the laughter…my life is so full because of all of these amazing souls that have passed through my life and left a huge impression upon me. I cannot imagine my existence without them and the lessons I have learned from them. I feel a tremendous sense of community and support. I’m so grateful.

Although sometimes I don’t want to be more aware of Autism, I remain in awe of Awe-tism. How awesomely consuming it is. How much time, energy, money, and strength that it demands of me. It doesn’t ask me patiently and wait for me to say, ‘just a sec’. It shrieks at the top of it’s lungs for me to hear it and drowns absolutely everything and everyone else out. I’m still listening but sometimes I just really want to turn the volume down.

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Comments»

1. Diana McCandless - April 21, 2010

What a very heartfelt blog. Thank you for sharing so deeply. I appreciate your gratitude for the parents who have preceeded you, laying down a framework for awareness about Autism. I’m glad you’ve found acceptance & made peace.


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