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​Blog

Who is Ryan?

6/15/2019

2 Comments

 
Picture
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?
No.

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.

Till NOW.

Written by Jessica Patay.

2 Comments
Tricia
6/27/2019 07:26:12 am

I’ve wondered the same thing about my son Quincy who is now 17yrs old with Autism who insists on taking his own shower with out my assistances. He prefers to do manly things with his father and uncle then spend time with his mom. The person who carried him 4 9mos, birth him into the world, cared 4 him & always will love him no matter what. Who became his strongest most devoted advocate for education & well being
It’s hard 2 let go but I must so he can continue being the best he can be & reach his full potential

Reply
Kristi
6/27/2019 07:53:09 am

To two wonderful moms - I feel like we just get so caught up in doing what we are able to do, because we so love these precious ones who have to fight for every step, that we often totally miss the fact that we're kind of missing them. Who they are and what they think and dream about. I tried to manage every aspect of Andrew's life and day to protect him from more pain and /or distress - exhausting myself and not leaving much room in me to just enjoy him or explore his deeper self. It's so hard, because we're so often running on fumes after doing all the things we've laid out for ourselves and them in any given day.
Jessica, you are such an inspiration and I so appreciate your candor and vulnerability. Praying for you and Ryan, and you, Tricia, as the journey continues, that God will continue to open our eyes and hearts and understanding of these very special gifts in our very special needs kids. Praying also for continuing strength to meet each day, and for that peace that truly passes any human understanding. You guys are amazing and wonderful.

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