Autism is weird. Is autism who Silas is or is autism something that has caged him? Who is Silas without autism? Is Silas autistic or is he ridden with a disease called autism? I dunno which way to look at it.
The other morning my sparkly darling of a son was being his adorable self. I was laying in bed with him, the sun was shining through through the white blinds and making his blonde hair sparkle. He was smiling so brightly. Then i thought to myself, what would he be like without autism?
I’ve been good at embracing the autism but in that moment I felt cheated, burdened, heavy, sad. I kinda had a flashback of my feeling from the beginning. But I told myself I wasn’t going to spend the day like that, so I didn’t.
But it’s in my head now. I want someone to tell me this is who Silas really is and was meant to be but I don’t believe it. “Everything’s meant to be” means there’s no free will. I need to know I’m not a robot in this grand scheme of things. Yes I’ve said this a million times.
Anyway, seeing him do the things he needs to cope. Reciting the alphabet 100 times a day, writing numbers and letters wherever he can, even if it’s just with his finger. Stimming, stomping, hitting, screaming, ear plugging…etc. These things, are they Silas? Who’s the boy in there that would have been? Or is he who he’s meant to be? Is he Silas?
Who is Silas? Silas is goodness. Silas is light. Silas is boy. Child. Snuggles. Letters. Numbers. Laughter. Meaty little thighs. Airplane rides. Singing. Goodness. Silas is goodness.
The verse you quoted, I firmly believe in. Just accept it, and you do have the wisdom to know the difference. Be patient, do what you know you should do, and don’t fret over those “immediate answers” you wish you had right now. And Silas IS ALL THOSE THINGS, and more that Jen listed above.
Silas is who he is. No one did this to him or you. We are all born with traits and temperaments (your boys are hard proof of this:) ) and yummy little bits that are a mystery and all our own. I don’t wonder what Silas would be like without autism because it makes me sad. I do wonder how our acceptance, or lack there of, may change who he is or meant to be?
Doing the best for our children means meeting them at their level and going from there, regardless of where that level is. We chose to be parents, and it’s hard hard work.
Silas can see and hear and jump and run and laugh and play and eat and cry and count and love his brother and he even eats white food now! Silas rocks!
I understand………… I have a hard time differentiating my son from autism…….. actually I can’t seperate the two. He is my only child and all I know. It is not WHO he is, but it will define his life. It is OK to feel cheated, wronged, hurt, sad, overwhelmed- we all have those feelings when our children are not going to have quite the future we dreamt of for them……………but we also have very special children- and we never take for granted ALL that they do in their little lives that is positive or progressive. Not many parents can say that.
Man, I’m glad I found someone who know exactly how I feel. Even down to the hyperlexia!! MWAH!!
And no, you cannot separate the two. You’re right.