It’s been a year and 3 months since my son was diagnosed with Autism, but really the heartache began much earlier. He was only 2 when the doctors confirmed one of my worst fears, but from the moment Charlie was born, parenting him was challenging.
I often found myself getting frustrated at him and sometimes feeling sorry for myself. After a year of being aware of his diagnosis, I am slowing changing my perspective, and it’s changing our lives for the better.
When strangers are peering into our lives during an epic public meltdown or when people talk under their breath, my frustration level increases along with self-sympathy, but I’m just now realizing that I’ve been sympathizing with the wrong person all along.
What about my son? How difficult must it be to get so enraged and out of control because your baby brother’s face is messy or someone left their trash on the table, and does he feel the sting of strangers’ stares and piercing comments like I do?
Even though he’s only 3 1/2, I believe he notices. Charlie feels life differently than you and I. From what I understand, he can’t shut out all the noise around him. Constantly, he is forced to find a calm among the chaos we call every day life.
I can only imagine the feeling when our schedule deviates from the norm without warning. Based on his response, it must feel like a wrecking ball reeking havoc on everything familiar, and for whatever reason self-injury seems the only palatable escape route.
What does that feel like? He’s 3 1/2 and rages an internal war against himself every single day.
I write about my fears of misstep with him for fear of a meltdown, but what if I feared crushing his delicate world, not afraid of the repercussions for me as a parent but the consequences for him.
This is not to say my heart doesn’t break every time he falls into the dark abyss of Autism. My heart aches for him, but sometimes I feel sorry for myself, thinking: I have to deal with this and that. I’m awake all night with a screaming, inconsolable child, but really what about him?
He’s awake out of control while asking me for sleep. I can’t even begin to understand how he feels when his body is raging, yet he so desperately craves sleep.
What about when I get annoyed that I have to map out and narrate every portion of our day before we do anything. If I don’t explain our schedule, he struggles to function. Have you ever had a plan set in your mind to have someone pull the rug from under you and turn your day upside down? I believe this is how he feels when even the slightest change occurs without warning.
He schedules his day every single day and lets me know what’s next. From the moment he gets up, he tells me what’s going to happen after school. With so much planning, I can see how a schedule change can derail him.
I can’t imagine how he feels when he’s seeking calm and quiet with 3 young brothers around. He finds quiet under a blanket alone which I always remove from him in hopes to help him learn to cope in his own home with his family. What must that feel like? As parents we all know what it’s like to be surrounded by crazy while craving some quiet, alone time but with no retreat in sight.
It has taken me awhile, but I’m doing my best to change my perspective and see the world through his eyes the best I can. It is changing the way I accept his diagnosis and how I parent him.
I will still challenge him with change of routine, flexibility, and socialization, because that is my job to help him grow into a competent adult. The difference will lie in my perspective. I will do my best to instill change utilizing his perspective instead of my own.
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