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.
Be the artist
Of your crisis.
You can create something beautiful and lovely out of the hardship you have been dealt.
It may take time.
It may take tackling a lot of anger, tears, WHY ME?s and feeling completely overwhelmed.
It is not overnight.
It IS a matter of perspective.
It is a matter of not giving up or giving in to despair, denial, or depression.
It is also a choice.
But maybe you never knew you had a choice.
Because what was handed to you was NEVER your choice.
You can decide this day:
My child’s diagnosis or cancer or behaviors or struggles SUCK.
It sucks the life out of me.
It sucks the life out of my family.
AND YET—this is not the end of the story.
I own my story and I will choose to write the ending—even if the beginning was written for me in the ugliest vomit color sharpie pen.
I will choose to find the hidden treasures.
I will choose to find the blessings.
I will be transparent when I am absolutely at my wits end and cannot find the joy, the gifts, the gratitude; and I vow to seek help if I get stuck.
I decide every day.
I will create beauty out of the ashes of disappointment, loss, heartache, endless appointments, meetings, hospital visits, medicines and schedules.
Even if it starts out looking like a paint-by-number piece. At least I started.
I can rise up,
And reach out.
I CAN DO SOMETHING beautiful for someone else.
Ask the universe:
What am I called to do as a result of the crisis I have walked through? What have I learned? What do I have to offer?
And then just wait.
The whispers will come.
Until then, say every day:
I will be the artist of my crisis. I will paint something beautiful.
I choose this. I choose this today.
Because of Ryan…I follow a meal schedule, a supplement schedule, and a medication schedule for him.
Because of Ryan…I avoid restaurants and parties; and I must tone down any food-related holiday—which is every holiday, by the way.
Because of Ryan…I have a blue handicapped placard in my car. That I use at Target, with or without him, I confess. There have to be some perks to this journey.
Because of Ryan… I have to hide many things from him, like if his brother or sister ate out, if there are any upcoming events or plans.
Because of Ryan…I walk on eggshells, doing a fancy dance daily in an attempt to prevent triggers and tantrums.
Because of Ryan…I have taught my other kids to lie, lie and lie. “If Ryan asks where we were, don’t say we got Yummy Yogurt, say we ran errands. And hurry up and finish that before we get home dangit!”
Because of Ryan…I splinter apart the family, trying desperately to give my neuro-typical “NORMAL” other kids the attention they so desperately need and want and deserve.
Because of Ryan…I am not always the jovial, light-hearted, SUPER-FUN mom I thought I would be.
I’m SO SICK and TIRED of saying “because of Ryan I do this, we do this, I can’t do that, or we don’t do_(?)__ fill in the blank with a million things.
But is this really RYAN’S FAULT? Is it?
Or is it the fault of Prader-Willi syndrome, a rare disease, that took up residence in his genes 15 years ago?
This crazy, genetic disorder laid claim to Ryan’s brain and body and eating and behavior and anxiety and perspective and functioning and motor skills and speech and social abilities.
And it laid claim to my family’s life, too.
It’s not really Ryan, it’s Prader-Willi syndrome.
When the madness stops for a brief moment, I hear the whispers of my soul:
Because of Ryan…I have been given the gift of shifted priorities. That all that really matters in life is faith, family, and friends.
Because of Ryan…I have grown in tenacity, endurance, and perseverance. I run emotional marathons every month.
Because of Ryan…I have mastered the art of answering 29 questions in 10 minutes while driving down the freeway, and not losing my cool.
Because of Ryan…I have learned what crisis feels like and I have tremendous empathy for others going through crises.
Because of Ryan…I am recovering from the prison of perfectionism and all its false claims and nasty “shoulds.”
Because of Ryan…I have watched my husband rise up in super-human patience and love and support.
Because of Ryan…I have witnessed a maturity and responsibility in Luke and Kate as they cheer their brother on, AND, those times when they talk him down off the ledge of his horrible meltdowns.
Because of Ryan…my life is deeper and richer and filled with goodness-moments and sweetness-moments I never would have noticed nor appreciated. Like Ryan’s daily morning hugs with me. Or when he is genuinely grateful for new socks or spiral notebooks as if they were the best Christmas presents he ever received in his life. Or when he asks about a friend or family member recovering from surgery and reminds me to pray for them.
Because of Ryan…I struggle, I yell, I cuss, I cry and I grieve, and yet simultaneously, I am filled with more gratitude for this one wild and precious life that I was given.
AND----Because of Ryan…I have met the most amazing, kick-ass, brave, warrior-mamas that I call my friends.
Because of Ryan, We Are Brave Together was born.
Author’s Note: I wrote this piece, with permission, after a friend shared about how other moms were responding to her and her little girl. This piece is a compilation of stories told to me through the years and my own observations.
We are all in the trenches of this thing called Motherhood.
It is exhilarating AND exasperating.
It is enlightening AND exhausting.
It’s a JOY and it’s a privilege.
Yet, our beloved children are a little different from each other.
Your child’s hard-wiring is such that sitting still, keeping quiet, and following simple directions, rules and schedules, fit him or her like a glove.
Your child keeps their hands to themselves.
Your child seems to listen at first command. Or 2nd.
Your child can sit quietly during rug time.
Your child can wait patiently for his or her turn on the swing at school or the park.
But this is not my child’s luck. She was born with a different wiring and processing in her brain and body.
She has severe ADHD.
She struggles to sit still.
She struggles to keep her hands to herself.
She struggles to NOT be physically or verbally impulsive.
She is not happy or gloating about this behavior.
She does not feel good in her head and heart that things go awry with playmates, so much so that she is rejected constantly.
And I, as her mom, am rejected constantly.
I have been shamed countless times for my child’s “unacceptable behavior.”
I have been sneered at and yelled at: “Fix your child!”
You assume I am a bad parent.
You assume I do nothing about her bad choices or mistakes.
You assume I have my head in the sand and act helpless about her behavior.
You assume I am not sad and mortified to my core that my child hurt your child.
Little did you know, we have been working with therapists and behaviorists and doctors. We are trying to learn absolutely everything we can to help her.
She is only 7 years old, by the way.
You have labeled my child as BAD.
You have labeled me as BAD. That I am negligent of doing what is “supposed to be done” when children are not easily compliant or re-directed.
You other moms of Naturally Compliant Children look at us as PROBLEMS.
I have a heart.
I have feelings.
I think deeply.
I feel deeply.
And so does my daughter.
She is not a psychopath without remorse or emotions.
We feel the burning coals of shame you heap on us down to our bones.
We are alone and isolated. Because you never took the time to get a little closer. You feared my child would rub off on your child, and then your child would never get into Harvard.
My daughter desperately needs to practice her social skills in real time, with neuro-typical kids, not just manufactured time in her social skills group. But you will have nothing to do with her because she is a “bad kid,” “the hyper girl,” “the kid at school who always gets in trouble.”
What I would love for you to do is ask me to coffee. Get to know me.
Ask genuine, caring questions about me and my daughter because you see the struggle that is taking place.
And you have decided to lean in and care and have compassion.
I would love that. I crave that. I need connection as much as my daughter needs connection. Please see us as humans, as hearts, not issues.
Please. I beg you.
Mom Seeking Empathy and Understanding
We said he would catch up on all his milestones.
We said he would be able to do all the things that other kids do.
It would just be delayed, due to his “hypotonia” or low muscle tone. His poor, little weak hands would learn. His long, skinny fingers that did not naturally or easily handle fine motor tasks would get stronger.
And they did.
And they didn’t.
Ryan is almost 15 years old and he does not know how to tie his own sneakers.
This hit me hard the other day.
My brace-faced boy who is SO EXCITED to go to high school next year, who is growing so tall and so handsome, cannot tie his shoes.
Should I have hired an OT (occupational therapist) to work with him over and over on this years ago?
Should I have printed out each step in pictures and tried myself to work with Ryan?
Was I too lazy or too busy?
How did this slip by?
Shouldn’t he know how to do this BY NOW? Insert flogging and self-flagellating behavior…
Did I fail?
Did I fail him?
What do we do with REGRET?
What do we do with the woulda-shoulda-couldas of our lives as mothers?
1). I think first we acknowledge it. Say it out loud. Be aware.
2). Then ask ourselves: what is the lesson here? What can I learn through this?
3). Do something with it. Don’t let it just sit there, hanging over you. Can you do the thing you didn’t do?
Can you apologize to someone?
Can you apologize to yourself?
Make a decision.
As in: I didn’t teach Ryan how to tie his shoes and NOW I am going to.
4). Let it go. Choose to be grateful that you learned something through this and then leave it alone. Write it down on a piece of paper and then rip it up, toss in the circular file. Or burn it--preferably without children in sight. ;)
Regret is an appalling waste of energy, you can't build on it - it's only good for wallowing in.