We usually get a lot of dirty looks when I take Scout out in public. People will give them to me and to him. It's like, "You need to discipline your kid!" and "You're a bad kid!" It hurts my heart, especially when people speak harshly to him. I wish they understood that he really is doing his best. He makes noises- loud, sometimes ear-splitting, and repetitive noises. He likes to touch people, and lately seems to be unable to keep himself from smacking girls on the butt. He gets upset and throws things. I understand completely why a lot of parents with special needs kids keep them at home most of the time. But that doesn't help Scout at all. It is a trial, but necessary for him to learn how to behave in public.
But there are always those people.
I got a button for Scout to wear when we go places. It says, "I'm not misbehaving. I have autism. Please be understanding." It has helped a great deal. When people read it, they do have more understanding, and we get a lot fewer mean looks.
But there are always those people.
We were at Oliver's track meet last Saturday (Way to go Oliver, beating both your prior records!), and Scout was getting more and more agitated, starting to throw dirt and rocks, getting in peoples' faces. We were getting the usual mix of patience and exasperation from people. It got to the point where I needed to hold onto him so he didn't cause trouble. I gave him to Bryce while I cleaned up our stuff, and I forgot to mention "Don't let go of him." (Bryce doesn't have as much practice with him in public as I do). Scout got away from Bryce and ran for the long-jump pit as fast as he could go (which is much faster than Bryce or I can go). He jumped in the pit right as a girl jumped. She barely missed knocking him over. Scout, loving risk, thought that was pretty funny. As I headed to get him, I heard a woman say, "Stupid kid!" I turned and glared at her and saw her complaining to someone about the dumb kid getting in the way. After grabbing Scout, trying with all my strength to not tell the woman exactly what I thought of her, I said, "It's people like you that make our lives much more difficult!" As I kept walking toward the car, I thought of all the things I wanted to say to her, my body shaking with anger, tears coming to my eyes.
After I calmed down, I realized that I made a mistake. I should have taken that opportunity to educate her. If a child with Down's Syndrome had done what Scout did, I'm sure she wouldn't have called him a "stupid kid." I should have said, "I know you can't tell by looking at him, but he doesn't think the way other kids do. Let me tell you what he's been through in his 5 short years on earth. He is autistic, which means that he doesn't understand consequences and risks, among many other things. He has had 2 tumors taken out of his brain. He has a handful of seizures, sometimes more, a day. He has pain in his head from the scar tissue that grew from having the tumors out. So, maybe next time you open your mouth to call someone a "stupid kid", you should think first, and realize that even if you don't see the handicap, it's still there."
I know this won't be the last time there are those kind of people in our lives. It won't be the last time that people see Scout for his noise, his intrusion of space, his tornado-like energy. But I wish they could see all the fighting he's done, all the fighting he does daily. I wish they could see the magical smile that lights up everywhere he goes. I wish they could see how he's willing to try anything (even things he probably shouldn't!). I wish they knew how he will work on something he wants to learn to do for hours or days until he figures it out. I wish they could see his heart, that is bigger than anyone else's. I wish they could see he is doing the best he can.
I wish they could see that he is an angel walking this earth.
Even though there are days, and there are those people who make the days more painful, I thank God every day that I have Tiny Toli in my life. His smile makes it all worthwhile!
Monday, April 29, 2013
Wednesday, April 24, 2013
Bring it on!
I wanted to start a record of our lives dealing with autism. Mostly, I think I need to vent, but I also want family and friends to know what we are going through. A lot of suffering in life is done in private, but I know a lot of our struggles are seen, even if they are misunderstood. I want to help the people in Scout's life understand more what he is going through, what he is fighting to overcome every day, and what he needs from everyone in his life to fight the best fight he can.
After hearing the official diagnosis of autism a couple of months ago, I was in more shock than I thought I would be. We had been pretty sure for a while that this was what made our little guy so different, but hearing it from the psychologist was still quite a blow, like the air being knocked out of you. What did that mean for him? What did that mean for his future? Would he ever have a "normal" life? The questions didn't stop there. Most often, I have found myself asking the ever-popular "Why?" It breaks my heart to see him suffering, to know that there is so much inside that he can't communicate to us. He can't tell me when he's sad, what makes him so angry, that he loves me. I long for the connection between most moms and their kids. I want so badly to be able to fix him, to take away all his struggles. Every mom wishes for this.
I have been asking the question "Why?" for much of Toli's life. When I watched him seize for an hour and a half when he was only 10 months old. Crying at the swollen and bruised head of my little boy after brain surgery. Watching him seize many times a day. Trying to help him when he is so angry but can't say why, when he is just so frustrated at his limitations. This question has been on my mind a lot, and I have been angry. I have been angry at God for allowing, or causing, my innocent boy to suffer. What did Scout ever do to deserve such punishment? Why would God allow a child to hurt so? I have been so angry with God that I even told Him I wasn't going to talk to Him anymore. It seemed my endless prayers to ease Scout's pain were in vain anyway. I screamed at God in my head, blamed him for everything that Scout was going through. I didn't expect lightning to strike me down for the anger I hurled at God, because I had started to think he didn't care at all, didn't hear me at all.
A couple of weeks ago, I was in the mountains on a beautiful day. I looked up at the blue sky, looked at the sun shining on the trees and making the snow look like a million crystals. The thought came to me, "Thank you God for this beauty." I immediately censored myself and said, "No, I'm mad at you! You let my baby suffer!" Then, as cliche as it sounds, it seemed as if the heavens opened. I saw a scene: The Pre-existence. God was telling us about Earth, the reason for going, what would happen there. We were all so eager to go. We knew the reward was greater than the pain we would suffer there. Then I saw this spirit- a beautiful young man, shining blue eyes, a smile that rivaled the Sun. He stepped up and said, "God, give me the hard stuff. I can do it!" My Toli, so strong, so sure of his strength and ready for a challenge, told God, "Bring it on!" I understood that Scout had chosen to come here and had chosen the challenges that this life would bring. We have been told that since we were children, but it became a truth for me in that moment. He chose. He isn't being punished or neglected by God. None of us are. We chose. Knowing Scout's personality, he was so excited for the challenge of this life. I know that in that moment, when he chose, I stepped up by his side and said, "I've got your back." I told him I would help him through it, try to guide him, but most importantly, love him with all of my soul.
We gave Scout his middle name, Anatoli, after a famous mountaineer. He has in him the necessary endurance to climb this mountain called life. He was so excited to start his journey, having no doubt he would reach the summit. I promised him I would help him up the mountain, by helping him carry his burdens. I need to be stronger to do that. I am trying every day to be stronger, to be more patient, to see him for the strong spirit he is. We may have forgotten the day we chose to come here, and why we were so willing, with so much anticipation, to come and take what life has to give. But as I saw that scene so clearly of Scout saying "Give me the hard stuff," I knew that he still has all of that resolve in him now. He still has all the ambition, fortitude, confidence, and ability that he had when he made the choice. I must still have all that I had when I promised him I would be by his side. I hope I can remember that. I hope I have the ability to find those things in me when I need them.
I know it isn't God's fault. I can't blame him for a choice that Scout made. Now, when I look into those magnificent blue eyes, I no longer feel pity.
I am in awe...
After hearing the official diagnosis of autism a couple of months ago, I was in more shock than I thought I would be. We had been pretty sure for a while that this was what made our little guy so different, but hearing it from the psychologist was still quite a blow, like the air being knocked out of you. What did that mean for him? What did that mean for his future? Would he ever have a "normal" life? The questions didn't stop there. Most often, I have found myself asking the ever-popular "Why?" It breaks my heart to see him suffering, to know that there is so much inside that he can't communicate to us. He can't tell me when he's sad, what makes him so angry, that he loves me. I long for the connection between most moms and their kids. I want so badly to be able to fix him, to take away all his struggles. Every mom wishes for this.
I have been asking the question "Why?" for much of Toli's life. When I watched him seize for an hour and a half when he was only 10 months old. Crying at the swollen and bruised head of my little boy after brain surgery. Watching him seize many times a day. Trying to help him when he is so angry but can't say why, when he is just so frustrated at his limitations. This question has been on my mind a lot, and I have been angry. I have been angry at God for allowing, or causing, my innocent boy to suffer. What did Scout ever do to deserve such punishment? Why would God allow a child to hurt so? I have been so angry with God that I even told Him I wasn't going to talk to Him anymore. It seemed my endless prayers to ease Scout's pain were in vain anyway. I screamed at God in my head, blamed him for everything that Scout was going through. I didn't expect lightning to strike me down for the anger I hurled at God, because I had started to think he didn't care at all, didn't hear me at all.
A couple of weeks ago, I was in the mountains on a beautiful day. I looked up at the blue sky, looked at the sun shining on the trees and making the snow look like a million crystals. The thought came to me, "Thank you God for this beauty." I immediately censored myself and said, "No, I'm mad at you! You let my baby suffer!" Then, as cliche as it sounds, it seemed as if the heavens opened. I saw a scene: The Pre-existence. God was telling us about Earth, the reason for going, what would happen there. We were all so eager to go. We knew the reward was greater than the pain we would suffer there. Then I saw this spirit- a beautiful young man, shining blue eyes, a smile that rivaled the Sun. He stepped up and said, "God, give me the hard stuff. I can do it!" My Toli, so strong, so sure of his strength and ready for a challenge, told God, "Bring it on!" I understood that Scout had chosen to come here and had chosen the challenges that this life would bring. We have been told that since we were children, but it became a truth for me in that moment. He chose. He isn't being punished or neglected by God. None of us are. We chose. Knowing Scout's personality, he was so excited for the challenge of this life. I know that in that moment, when he chose, I stepped up by his side and said, "I've got your back." I told him I would help him through it, try to guide him, but most importantly, love him with all of my soul.
We gave Scout his middle name, Anatoli, after a famous mountaineer. He has in him the necessary endurance to climb this mountain called life. He was so excited to start his journey, having no doubt he would reach the summit. I promised him I would help him up the mountain, by helping him carry his burdens. I need to be stronger to do that. I am trying every day to be stronger, to be more patient, to see him for the strong spirit he is. We may have forgotten the day we chose to come here, and why we were so willing, with so much anticipation, to come and take what life has to give. But as I saw that scene so clearly of Scout saying "Give me the hard stuff," I knew that he still has all of that resolve in him now. He still has all the ambition, fortitude, confidence, and ability that he had when he made the choice. I must still have all that I had when I promised him I would be by his side. I hope I can remember that. I hope I have the ability to find those things in me when I need them.
I know it isn't God's fault. I can't blame him for a choice that Scout made. Now, when I look into those magnificent blue eyes, I no longer feel pity.
I am in awe...
Subscribe to:
Comments (Atom)