Wednesday, November 03, 2004
It was easy in The Secret Garden. Colin was a tormented boy-- who filled the night quiet with his noisy, violent rages. Mary was a fiesty girl, who knew the truth about Colin. He needed fresh air, friendship, and a project to throw himself into. In a "makeover" unlike any other, Mary helps Colin change from a thin, pale, yellow child to a healthy, laughing, rosy-cheeked child. Imagine his fathers surprise when he runs to him after having been confined to a wheelchair all his life.
This was the romantic notion I had from the beginning. If you try hard, let things progress naturally, and throw in a little love along the way-- things can be fixed--even people. It doesn't take much though for me to discover that all I thought I knew about disability and parenting was--untrue. All that I thought I could do--impossible.
Noah's cries are tormented. Noah's face is scratched and bruised. Noah broke his fourth window yesterday. Noah. My baby. I have tried. Lord knows I've tried. I've thrown the textbooks out the window. I am sick to death of "TEACH" and "ABA" and "Discrete Trials" and "Sensory Integration" and numerous other "cures" that we throw at this child we feel is broken and who we want to help. I wish for Noah that he could have fresh air, friendship, and a life's work to throw himself into.
He has a little blister on his finger from his attempts to make sense of his world. He plays with that little red chewy tube like there is no tomorrow. He twists it and flicks it in front of his eyes for hours at a time, even while doing other activities. He holds on to that "chewy" like it is his lifeline.
I hate Autism for what it has stolen from my son. I hate brain damage for what it has killed. I sit here in the den. In a room torn up from Noah's rage. Listening to the only song that would calm him today. I played song after song until finally I played"Clocks" by Coldplay. The words that keep haunting me from this song---"Am I part of the cure or am I part of the disease?"
I hate that we have to walk on eggshells. I hate that Noah breaks windows with his head. I hate that he slaps his face until it bleeds.
But in the middle of our never ending drama. Somewhere between the way ups and the way downs, is a family that is strong. There's a little toddler who can shrug off getting his hair pulled, who finds the "chewy" and brings it to Noah if he seems to be getting upset, and who can find the video he wants and can singlehandedly operate the tv and vcr. There's a dad who never forgets a feeding, who can change a diaper on a wiggling six year old, who still has a spring in his step. There's a mom who said, "Screw it, I am going to law school," who has learned that possessions are nothing--it's life that counts, and who has learned to walk even with another hemisphere taking shape on her backside.
And battered, bruised but NOT dejected... he comes down the stairs. Noah is happy?!? What? I follow him. His activities seem purposeful 1. He squishes a tiny tomato on the counter until the juice is squirts all over his hands. 2. He tromps into the den and plops on the couch. 3. He asks me for "chewy." I don't have it and I say so. 4. He grabs A Great Day for Up 5. He leans his head on my shoulder and puts his hand on the skin of my back just under my shirt. 6. He talks to himself and smacks his lips. 7. He toots matter of factly. 8. His backpack beeps and he lays his little body down on the couch.
In the ever present POSSIBILITY of an EVENT, I take this moment as it is. Five minutes of quiet. Five minutes for the Secret Garden-Mary inside me to store up a little hope. Five minutes where life doesn't seem to be ending. Five minutes where my pride in what we've accomplished surges up with a pleasant glow. I wipe the tears, smile, and sit here... I feel so NORMAL. I am just a mom sitting on the sofa with her six year old. What's so delayed and disabled about that?
This was the romantic notion I had from the beginning. If you try hard, let things progress naturally, and throw in a little love along the way-- things can be fixed--even people. It doesn't take much though for me to discover that all I thought I knew about disability and parenting was--untrue. All that I thought I could do--impossible.
Noah's cries are tormented. Noah's face is scratched and bruised. Noah broke his fourth window yesterday. Noah. My baby. I have tried. Lord knows I've tried. I've thrown the textbooks out the window. I am sick to death of "TEACH" and "ABA" and "Discrete Trials" and "Sensory Integration" and numerous other "cures" that we throw at this child we feel is broken and who we want to help. I wish for Noah that he could have fresh air, friendship, and a life's work to throw himself into.
He has a little blister on his finger from his attempts to make sense of his world. He plays with that little red chewy tube like there is no tomorrow. He twists it and flicks it in front of his eyes for hours at a time, even while doing other activities. He holds on to that "chewy" like it is his lifeline.
I hate Autism for what it has stolen from my son. I hate brain damage for what it has killed. I sit here in the den. In a room torn up from Noah's rage. Listening to the only song that would calm him today. I played song after song until finally I played"Clocks" by Coldplay. The words that keep haunting me from this song---"Am I part of the cure or am I part of the disease?"
I hate that we have to walk on eggshells. I hate that Noah breaks windows with his head. I hate that he slaps his face until it bleeds.
But in the middle of our never ending drama. Somewhere between the way ups and the way downs, is a family that is strong. There's a little toddler who can shrug off getting his hair pulled, who finds the "chewy" and brings it to Noah if he seems to be getting upset, and who can find the video he wants and can singlehandedly operate the tv and vcr. There's a dad who never forgets a feeding, who can change a diaper on a wiggling six year old, who still has a spring in his step. There's a mom who said, "Screw it, I am going to law school," who has learned that possessions are nothing--it's life that counts, and who has learned to walk even with another hemisphere taking shape on her backside.
And battered, bruised but NOT dejected... he comes down the stairs. Noah is happy?!? What? I follow him. His activities seem purposeful 1. He squishes a tiny tomato on the counter until the juice is squirts all over his hands. 2. He tromps into the den and plops on the couch. 3. He asks me for "chewy." I don't have it and I say so. 4. He grabs A Great Day for Up 5. He leans his head on my shoulder and puts his hand on the skin of my back just under my shirt. 6. He talks to himself and smacks his lips. 7. He toots matter of factly. 8. His backpack beeps and he lays his little body down on the couch.
In the ever present POSSIBILITY of an EVENT, I take this moment as it is. Five minutes of quiet. Five minutes for the Secret Garden-Mary inside me to store up a little hope. Five minutes where life doesn't seem to be ending. Five minutes where my pride in what we've accomplished surges up with a pleasant glow. I wipe the tears, smile, and sit here... I feel so NORMAL. I am just a mom sitting on the sofa with her six year old. What's so delayed and disabled about that?
