Tuesday, April 12, 2011

my own words | What I wish I knew then

"my own words" is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion or understanding to unique issues. Remember, one "story" could change a life, and that could be your story. 

To submit your own story, click here.

This 'my own words' post is from Lisa G. at
Seven Yuck Mouths & Autism.

I think back a few years ago, all the struggles we first encountered as a family dealing with autism. All the books I read and the utter confusion of everything I read. Nothing made sense and it made us feel very alone. All the questions that went unanswered all the fears and the lack of support. I remember reading Jenny McCarthy's book and thinking about how strong she was and how she fought for her son. I remembered thinking she was my freaking hero that if she could do it so could I. I could fix my son, I could cure him of all his problems. The only problem with that as I soon came to realize that you can't cure what is already there. I couldn't muffle him or make him live in our world since he was so safe and secure in his. What I did learn is that I had to figure out how to reach him and in those early years all there was was silence. Silence and odd words here and there, so much frustration for everyone.

I think its wrong to want a cure for my son, because as I look back at him as a infant he was always just a little off, there was always something different about him. And we've come to love him for his little quirks and all the things that make him different. So how can I cure him of himself? What would be left of him if I did that? I love his honesty even if sometimes its just a lil to honest for society. I love that he lives in reality, I can't fake him out at all ever. But that's what also makes me sad, he lives in a very realistic world and in that world airplanes go to airports and cars drive to houses, there is no ""hold your horses"" or wait just a second. But none of that really matters much anymore, what I want most for Racer is to be happy. And on a very good day he is, there is no stress, there are no meltdowns or sensory overloads. And those are the days that I wish I could capture and let the world see. His smush face he gives me when I'm being to silly for him, its those days that melt all the other days away.

But I wish I had known that sooner, so much missed time with him because we were doing what we thought was best. I would never give up any time with Racer in the hopes of curing him. I love every inch of what makes him unique. There are things that I wish I could make better for him but all that will come in time. I have hope for him, but that hope wasn't always there but I can deal with that now.

I think what I wish for my readers to come away from when they read my blogs is that when it all seems so dark and you can't see two feet in front of you....there is always hope. Because hope is all we have to hold on to.

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1 comment:

  1. Wow. What a supportive, loving, patient Mama you are. Racer is lucky to have you. And how good of you to capture these thoughts - you'll probably look back on them as things evolve, and smile. Good for you.