Sunday, May 22, 2011

I walk in faith

We just finished the 2011 Walk Now for Autism by Autism Speaks. If you've read my previous posts you know how important this walk is to me. It represents new beginnings for me and gives me reassurance that I am not alone. I am proud to say that this year, I did not cry one bit! Probably because it was so hot that all my tears dried up before they could hit the surface! 

Every year, I pray for something different. Our first year, I asked for strength, and it has come in waves. I've had moments when I felt like I was alone in this and everyone expected way too much from me. See, the thing about being a "great mom" is no one expects anything short of perfection from you. So while the less-than-perfect moms are getting help left and right, I'm left alone, stressed out and tired. No one expects you to complain, make mistakes or even cry. Of course in the beginning people throw their support at you. "Let me know if you ever need anything" "I'll always be there for you" "If you ever need a break, call me." However, on the days that I've been 2 steps away from pulling all my hair out or felt like I should just stay locked in my bathroom forever, I've been mostly...alone. That's just because people have their own lives to live. People have the best intentions, but I've realized that in the end, it really is just my boys and I, and I'm okay with that, because my strength comes from a source like no other.
The next year, I prayed for understanding. There was so much in this new world I didn't understand, and I hate not knowing. By then of course, I understood the basics, but I was starting to dig deeper into sorting out what exactly Autism was. It's taken me this long to realize that every day, autism is something different in my son's life. It is the thing that makes him cringe in pain when the school bell rings, but also the thing that makes him wake up at 5am laughing hysterically for what seems like hours. Autism is the thing that has kept my son from independently speaking, but also the thing that puts him at the top of the list of people I know with incredible problem solving skills. Autism one day is cheese on my walls and the next day, tight hugs that last for minutes. One day it's his inability to draw horizontal lines, and the next day it's him clicking away on a computer program. Autism is not all negative. I may never understand the science of it, but I know this. It's what makes him ....him.
Our third walk year, I prayed that my son would speak. He was 5 then and still nothing. I was nervous and worried that I would never even know what his speaking voice sounded like. I was scared that I would never hear those words a mother longs to hear. How would he survive as an adult without being able to talk. I had seen autistic kids with communication devices, and if it came to it we would walk that line, but I didn't want that to be my son. I wanted him to speak like other kids. I wanted the light to go off in that part of his brain that would make him look at me and say "I love you mommy." I dreamed about it too. In my dreams, he had a voice of an angel. In one dream, he sang like an opera singer, even at his young age. At this point he was humming songs, but no words. I thought about using that as a bridge to reach the speech part of his brain, and it worked. I'll talk more about it in a later post, but now I can get him to repeat words after me. He will VERY RARELY say "hi" and "bye" independently, but that is probably more out of routine than wanting to communicate. However, I take my blessings as they come!!!!!
This year, I prayed for peace. Not for me, but for CJ. He has been having a lot of sensory issues in the last few months and it's very painful and disturbing sometimes. I want to pick his brain and find out just what he's going through when he gets that faraway look in his eyes and the veins pop out of his neck as he screams, jumps and applies pressure to his chin anyway he can. I want to ask him why he wakes up in the middle of the night sometimes laughing or crying. I want to ask him why he enjoys peeling the skin off this fingertips, or why he keeps using clips to grab his belly button. I want to ask him what goes on in his head when the vacuum cleaner goes off, or when we walk into a restaurant full of people and noise. However, since he cannot respond, I'm just asking God to take care of it. This year, I prayed for peace.


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