They stopped me in my tracks.
Her words. About her son with autism.
“I just want to allow him the chance to become who he is...”
In almost 16 years, I have never thought of this. I have never dreamed of this. I have never pondered this. I have never wondered about this. About him. About my son Ryan in THIS way.
I manage him.
I supervise him.
I take care of him.
I protect him.
I watch him.
I schedule him.
I walk on eggshells so as not to set him off.
I keep him occupied and happy dare he get bored and become upset or obsessive about something.
I learn again and again what to say, what not to say, what to do, what not to do.
I have gained the finesse of living with him, his needs, his insatiable anxiety, his food drive.
I have a PhD in behavior management, it feels like at times. (Not that I am an expert or that I expertly roll out the techniques and strategies either!)
Have I ever thought to myself or out loud:
Who is Ryan Bradley Patay?
Who is he becoming?
Who is he supposed to be?
Who is he?
No. For all my depth and introspection and thinking and the touchy-feely woman and mother that I am…No.
Have I thought about this with my other two teenagers, my normal neuro-typical kids?
Kate, who is my middle-school 13-yr old, and my mini-adult, Luke who is 18?
OF COURSE I have.
Do I try to have deeper conversations with him? NO.
And yet, he asks deeper questions of me, of life, of God, of other people’s lives.
In fact, he asks 11,000 questions a day, by the way, EXHAUSTING ME to no end--but sometimes there are golden questions in there.
Do I ask about his wants?
About his dreams?
About his hopes?
Any talk about feelings and wants are somehow related to his needs, his meals, his anxieties, his egocentrism. Which still feels like the outside stuff. The Prader-Willi stuff. The Autistic stuff.
NOT Ryan The Human Being, created by God, with worth, beauty, and purpose. Not that Ryan.
Who is that Ryan?
Does he know?
Can he articulate it?
Is he longing for me, his mother, his first love, his blueprint, to ask him? Has he been waiting?
Is he waiting for someone to release him?
I think because of his rare, genetic disorder, and his cognitively impaired brain, I have sold him short. Maybe. Perhaps I have presumed incompetence in my sweet Ryan. He is highly verbal and social, yet, I don’t enter his deep world. I never thought about the fact he has a deep, deep world.
Written by Jessica Patay.