He and the boys bounced around like pin balls on the trampoline playing the much requested "Tackle Game." As you might imagine, this game involved tackling or avoiding being tackled, depending on your role. They played for almost an hour. The backyard was filled with giggles and shouts and the bouncing bodies of little boys. Nothing out of place happened. Kids got knocked down--that's the nature of the game--but never once did anyone cry or yell or seem hurt.
Which is why, 45 minutes later when I called everyone for dinner, I couldn't undestand why Gideon, then four years old, refused to use his arm. I tried everything to get him to move it. Like a good mom, I resorted to bribery. "Gideon, if you'll just use that arm, you can have this popsicle." "How about a cookie? Here, use your right hand there and just pick it up."
But nothing worked.
The arm looked fine, not cuts or bruises. It was swollen or red. Gideon himself seemed fairly even keeled. He wasn't overly upset. The only time he made a sound was if I tried to move that arm.
As the evening wore on, his mood changed to, for lack of a better word, grumpy. He held the arm close to his body still and no amount of cajoling would make him reach for anything. Finally, just before bedtime, I got a dose of ibuprofen in him (a feat not any easier for his lack of two working arms) and put him to bed. While he slept, I called the pediatrician on duty, gave her a bit of Gdeon's background, and expressed my concern.
"Did he hurt it?" She asked.
"I don't know." Because I had no idea. A few hours ago, he was fine. Now he wasn't.
"Did he tell you it hurts?"
I sighed. "No . . . he doesn't . . . he can't tell me if it hurts."
"Well, did he cry or yell or anything like that?" The doctor questioned.
"No," I said firmly and more than a little annoyed. I hoped my frustration was evident; I was worried about my child. "As I told you, he has autism. He doesn't talk. All I know is he won't use his arm. What do I do?"
Following her instructions, the next morning, Gideon and I headed to the emergency room at the local children's hospital. Eight hours later, several exams, x-rays, and one surprised doctor later, we discovered that Gideon had a broken arm.
He never once told me it hurt. He never once cried. He never once yelled or screamed in pain. He sat stoically holding his little arm across his body in silence.
See, the thing is that Gideon is non-verbal. I should say he is very limited verbally. He has a handful of words that he uses when we make him. He says things like, "I want water," or "I want cookie," or "I want crackers." (Huh? I guess his words revolve around food). He also scripts. Scripting is when a person repeats back something they've heard, often song lyrics or lines from television shows.
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| Gideon with his broken arm in a sling |
For me, this is one of the most difficult aspects of autism. I remember praying in the emergency room I could just have one "autism free" day for Gideon so he could tell me how he was hurting. I felt useless, helpless, and like a failure. Yes, a failure. There were so many questions I couldn't answer. When your child doesn't speak, you are their voice. You have to put what is happening to them into words. And sometimes, that's nearly impossible.
I know Gideon is smart. He reads books; he plans and executes like a very successful bank robber. He understands me . . . when he wants to. But just imagine never having a real conversation with your child. Imagine if you didn't know if his tummy hurt or if a bee stung him or if he broke his arm. Imagine if they only time he said he loved you was when he was repeating the words back to you.
It's heartbreaking and frustrating. For Gideon. For me.
Most days I feel like some kind of CSI agent. All I have are clues to help me figure Gideon out. I've become an expert in watching him closely, using his body language, his stims and \anxiety levels, his behavior, to understand what he wants to communicate. Sometimes I get it right and other times, I just don't know. He lashes out, lately with hitting and biting and pinching. I have to teach him that those behaviors are not acceptable when they are the only way he thinks he can talk to us.
Out of all my children, I worry about Gideon the most. Will we ever find a way to give him a real voice? How will he be able to function in the world without communicating? Will he ever be able to tell me what he's thinking, how he's feeling, that he loves me?
The answer is: I don't know. I can't see what the future looks like. Heck, I can hardly see what tomorrow looks like. I just know I have an ache in my heart for him, for him to know how much he is loved, for him to know that we want to understand him. All I have are prayers, a plea that one day, some way, Gideon will speak to communicate with us. Maybe the way he speaks will not be the way we expect it, when we expect, or how we expect it.
But I don't care. All I want is for Gideon to have a voice.
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