A Tender Balance
My son Jack has autism. He is thirteen.
Every day he comes in contact with a variety of people who don’t understand the way he thinks, feels, speaks, or moves. I have no idea what this is like for him.
And yet, I am guilty of it also—guilty of always trying to show him a better way to communicate, or behave, or learn.
It is a tender balance, this autism thing. On one hand, I need to ready him for the world as best I can. I need to teach, and to explain, and to social-story my stupid head right off my body.
At the same time, this little thing called acceptance dangles precariously before my eyes. Is it possible to teach and still accept him as he is? Can I nudge him in the direction of typical, and still respect the limits of his diagnosis?
I do not know. I may never know.
Jack is talking to himself a lot lately. I hear him carrying on full conversations upstairs in his room, or down the hall, or at the dinner table. It’s like living with a ghost.
This means his anxiety is spiking. It means he is disconnecting from us and burrowing down into autism’s deep waters, where it feels cozy and warm, and the colors and sounds of everyday life are muted, and soft.
If I’m in a good mood when I hear him, I think this: well, we’ve been here before, this is how the spectrum works, it ebbs and it flows.
If I’m the least bit cranky when I hear him, because I’m tired or I’m frustrated or I’m scared, I think: I will never be free of this. And neither will he.
Sure, we’ve done this before. We’ve gone to the doctor and altered his medication and introduced new therapies. We’ve worked on breathing techniques and tried to get him more exercise. And we’ll do that again this time. In the meantime, I’m trying to picture what life looks like for Jack beyond his fishbowl.
Because right now, I only have one job. My job is to take both his hands in mine, pull him from the depths of his ocean, and into the light.
My Jack-a-boo, where did you go? Who are you talking to? What are you thinking?
I miss you.
Do you remember the wooden puzzle we had when you were a little guy? It was made up of shapes that were all different colors and had plastic pegs on top. Hand over hand, I would guide your chubby fingers to grip the peg, and fit the pieces together. Sometimes you would try to shove the square piece into the round hole, or the triangle into the spot where the oval went.
I remember the oval was green.
Since you were an infant, we have asked you to be someone you are not.
We wanted you to sleep on our timetable.
We couldn’t understand why you spit out all the mashed bananas.
We got frustrated when you cried.
As you got older, we asked more from you. We said, come, little boy. Take this piece of paper and write your name. No, no, don’t hold the pencil that way, hold it this way. This is how we hold a pencil in school.
Sit still at your desk. See the other kids? They aren’t fidgeting and flapping like they want to crawl right out of their skin.
Kick the ball this way.
Stand in line that way.
How dare you scream and cover your ears because the lights are too bright or the music is too loud?
How dare you sit all alone on the playground because you feel confused, and overwhelmed?
How dare you be who you are?
Be like us. We are better than you. We are whole. We are right.
We told you to be quiet in church, because church is not a place to jump around like we have ants in our pants. We do not make noise during Mass. We feel God one way only and it is not your way.
It is never your way, is it, Jack-a-boo?
At dinner we ask you to please stop pushing your food around the plate. After all, it’s a meatball! Who doesn’t love a meatball? Everyone loves meatballs. Try it try one little bite just a small bite stop crying try the meatball or no ice cream you just need to try a bite and then I know you will love it.
Be who we expect you to be. Stop being you.
Honestly, why are you so afraid of everything all the time? Why are you so scared of the wind and loud noises and the color orange? It’s not normal.
Be more normal. Please, we need you to be normal.
And listen, when someone hits the ball to you, you catch it. See! You put your hand out in your glove and you grab the ball out of the air. No, no, not like that! Watch for the ball! Watch it come to you!
What do you mean, you don’t like baseball? Everyone likes baseball!
Be like us. Be like everyone else.
Talk like we do, and move like we do. Love God the way we do, catch the ball like we do.
Oh, Jack. When I think about all the messages we’ve sent over the years—all the subtle innuendos about your place in this world, well, it’s no wonder you’d rather talk to yourself all day. I’m sorry.
I hope one day, you’ll forgive me. You see, I only get one chance to be your mother. I am trying to do everything right. I am scared. I am lonely. I listen to people say they would never medicate their child and then I watch you wash down pills every night and I think, what in fresh hell am I doing?
The thing is, you may never fit like the green oval. And that is perfectly okay. That is perfectly right. You are right.
One day, the world will stop thinking in terms of shapes, and colors, and disorders. Until then, both of us will have to continue swimming against the tide.
In the meantime, talk to me. Please, talk to me. Tell me everything, my funny, complicated, misunderstood little fish.
Hold my hands in yours, so I might lift you to the surface.
In a world of no, speak your very own yes.
Take up space.
“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” –Albert Einstein
March 12, 2018 @ 10:43 am
Thank you… just thank you.
I have a tear of recognition in my eye.
Why do I try to change you , my perfect boy?
So I can feel comfortable.
Shame on me.
March 12, 2018 @ 10:47 am
This is beautiful and heart-wrenching at the same time. Hang in there Jack, and keep up the good work, Carrie.
Stephs Two Girls
March 12, 2018 @ 11:35 am
We can learn so much from our children x
March 12, 2018 @ 12:57 pm
Jack is so lucky that you are his mom.
March 12, 2018 @ 1:26 pm
Looking back, I find that in our experience with my child’s anxiety, the cause of worsened anxiety has always been an imbalance between the pressure to comply with neurotypical expectations and to have time and space to be free to be herself, pursue her special interests, no matter how strange they seem to allistic individuals. Her special interests do not hurt anybody.
We finally understood the urgent need to create that safe space for her at home. Her home and her family needed to be her truly safe space. If she does not want to eat green vegetables? So be it. If she wants to jump, squeal, gallop? So be it. If she does not want to participate in busy, noisy events- it is ok. We work around her. If she wants to watch a preschool TV show because the show’s utter peacefulness makes her happy? So be it. So what that she’s a teen.
People told us not to. That she would lose gains; that things would get worse. Well, guess what? Since we created this comfort zone and then expanded it into her school environment, her anxiety diminished to almost none. And since her anxiety has been at bay, she has been growing, trying new foods, voluntarily leaving her former comfort zone, and staying calm during most frustrating situations. And she recently told us that she had outgrown her preschool TV show (although we did not mind the show).
Of course, she was and always will be expected to be respectful and we are trying to nurture kindness, empathy, and tolerance. We are not talking about allowing behavior that would affect her or others adversely. We just respect that some of her interests and the way she experiences the world are different.
When it comes to autism, imho, we have to make sure not to mistake anxiety as an unavoidable part of autism. Emotional, social, and academic growth will always be stunted during exacerbations of anxiety.
We have to look for the triggers of anxiety, accommodate the person accordingly, and wait. Really, to anybody who is constantly urging their anxious children to achieve neurotypical expectations of being, regardless of good intentions, try to stop for a while. Just be. Be love and peace. And see what happens. What are a few months out of a whole life ahead? As long as any of the interests and behaviors are not harmful, why not let our kids be themselves for a while?
And please, let us all ignore ignorant statements that put down families for starting their children on medications. Would these very same people prevent a diabetic child from taking insulin? Sometimes medications are needed. It is truly that simple.
Our children’s brains are still developing. Their senses will mature, they tend to develop more effective filters, and with our help, they will develop coping strategies and find accommodations to allow them to live with existing challenges and to lead a happy life in a world that is not made for them.
March 12, 2018 @ 9:46 pm
This is so true!!
March 18, 2018 @ 1:08 pm
As much as I loved Carrie’s original post, I think I love this response even more. The world is a very stressful place for our kids. As long as they aren’t doing anything harmful to themselves or others, home should be the one place they can be free to be themselves. I didn’t always get that part right, or when I did, I didn’t know WHY it was right…..but looking back (my son is 21 years old, a junior in college, and has just been accepted to the PhD program of his choice–in Pharmacy) home, and the people in it, were safe.
Joann D Carlson
March 12, 2018 @ 2:16 pm
When I take the time to read your posts, I gain even more knowledge into the world of autism. I had a hyperactive son. We adopted him. Years later we learned fetal alcohol syndrome was likely the cause. Similar to your world, we found ourselves having to make excuses or picking him up off of the ground after a bike crash, etc. One of my craziest memories was more than one call from a teacher saying “Bruce is running in the hall again”. I can remember saying “Ok, I am here, you are there, what would you like me to do?” We had two fabulous school teachers out of the first 4 years of school. The others not so much. I am thankful that they are no longer teaching today. When I see a mom struggle with a child in a store, I know that I am kinder than most because I recognize the symptoms. Thank you for your blog. I know it blesses many a parent.
March 18, 2018 @ 1:16 pm
Oh yes, this….I remember getting similar calls, especially in elementary school….”Um, your son is yodeling in the bathroom again.” He was a very anxious little guy, and would escape to the bathroom when overwhelmed or overstimulated.. And he would make sounds in the bathroom, because he liked the way they echoed. OK, we can have “a talk about that.” But what, exactly, would you like me to do at this moment?
March 13, 2018 @ 4:21 pm
Oh Carrie, thank you for touching upon perhaps the most important part and most thought of point of Autism…I think about this everyday, should he do this? Why didn’t I make him do this? etc…Balance, acceptance, and let them Be….thank you!!!!!!!!!!!
March 13, 2018 @ 9:20 pm
I feel so badly for you, not only because Jack is Autistic but because of the guilt we all feel as parents hoping that we are doing the best for our children regardless of their issues. We must all do what we feel is best and not let society make those decisions for us and our families. If medication is what Jack needs have no feelings of guilt for giving it to him. If he had a physical ailment you would not think twice about it. I am 72 years old and suffered with very severe anxiety all my life. It ruled my every waking moment and robbed me of so many things I could have been successful at. Five years ago I finally gave in and began to see a psychologist and psychiatrist who recommended medication. It has changed my life for the better and my only regret is that I did not have this opportunity earlier in life. I will take whatever is left of my life and at least enjoy those years. Just do what YOU feel is best for Jack.
March 14, 2018 @ 12:16 pm
Your column always gives me insights into a world that is new to me. I think it would be daunting to try to balance helping a son or daughter learn new skills with letting them be themselves. Your patience, humor, and creativity are such an inspiration. I think back to some of your columns and I chuckle. Others bring a tear to my eye. Your family is so lucky to have you!
March 18, 2018 @ 10:45 pm