In the last few years my ability to keep up with “stuff” has diminished. I lose keys, reading glasses, my purse, my shoes, my phone, my train of thought…etc. If you’re in the same season you know what I’m talking about. This misplacing of things and thoughts has increased over the last decade, but there is something else I have lost over and over for years now. My perspective.
I like to think that I’ve improved, but even a little loss of perspective goes a long way. I’m pretty good with the overarching perspective of what’s important. Except for all the times I’m not.
Hindsight being what it is, humbling and excruciating, I can see that most of the time my loss of clear thinking with its resulting stupid actions comes from some event triggering a fear of some kind. Afterwards I’m left thinking, “WHAT was I thinking?!! Would somebody please hit the do over button?!”
One of my biggest fears in parenting Nani has been the arrival of the day when I can’t care for her. When she was a baby and we received the first of several diagnosis with very poor prognosis, that some day loomed in my mind like a black hole. She would forever be a child, but I could not forever be her parent.
At first you are just considering the fact that you will most likely not outlive your child. But when your child has behaviors that threaten your ability to take care of her and put her at risk of institutionalization then those behaviors become your very worst enemy, your very worst fear.
Behaviors related to the diagnosis of autism vary greatly, some quirky and endearing, some disgusting, some that break your heart and others that scare you. Parents and families in the autism club love sharing the quirky, endearing ones. (Honestly, we also love sharing the reactions of the uninitiated to those quirky behaviors.)
There are a few things about Nani’s behaviors that you can count on.
I spoke to a group of teachers last month at an in-service focused on building a cooperative parent and teacher relationship. The teachers were all teachers of students with autism. The facilitator wanted me to share from a parent’s point of view what it’s like to be the parent, what you’re feeling, what you’re dealing with, and what you might be thinking.
I wanted to tell them what parents are thinking is, “what liquor store delivers??”.
But I didn’t. Instead I told them about a day when I lost perspective and why.
One July afternoon Nani’s teacher called to say that she was refusing to wear her shorts, and that she could not be put on the bus without them. I tell him I will be there to pick her up. Driving to her school, I am wondering where this behavior came from. I am determined to have her respond to me and co-operate. I need her to co-operate. I am confident (or delusional!) she will, and terrified she won’t.
Walking into the classroom, I see her standing in the corner by the back door, her back to the wall, her eyes wide and wild. Her expression and posture tells me she believes this to be a life and death struggle. She looks tall and gangly wearing her T-shirt, diaper and high-top tennis shoes. After 18 years the disbelief resurfaces one more time. I stare at her for a moment somehow shocked that this is my child standing there. I just can’t reconcile the young woman I’m seeing with the little girl I used to hold on my lap. I can’t understand how we got here. Panic and anger drive a conversation in my head.
(FYI-Anger insisted on being in capital letters, panic grudgingly settled for italics.)
Please don’t let this be the new obsession.
I WILL NOT LET THIS BE THE NEW OBSESSION.
I don’t want her to be a wild woman refusing to wear clothes.
I WILL MAKE HER WEAR HER SHORTS.
Loneliness washes over me.
There is only me to deal with this right now, to get her home, to calm her.
NONE OF MY FRIENDS HAVE TO DEAL WITH THIS CRAP!
How can this be my daughter? How did she get so far away from me? Come back Nani!
I WANT HER TO STRAIGHTEN UP RIGHT NOW!
She is so out of control, so frightened.
FRANK’S OUT OF TOWN AGAIN!
Can I do this alone? Can I keep her and me safe?
I DO EVERYTHING ALONE!
Nani, what happened today? I wish you could tell me.
LORD, SHE SHOULD BE ABLE TO TELL ME!
She looks so scared.
JUST STOP THIS NANI!
I want you to feel safe.
I AM SO MAD AT YOU NANI!
Nani, you are breaking my heart.
I HAVE TO MAKE YOU STOP THIS!
I don’t know what to do.
Then foolishly, my fear drives my behavior. I am determined to keep her safe. She needs to wear her clothes so she can live in my world. So, I begin fighting with her about the shorts. On her good days Nani can be irrational by our standards. Today she is absolutely crazed with fear. We wrestle for some time. I won’t give in. I am not listening to my heart, only my fear. I get the shorts on her. She is crying. I have been rough, a bully. Walking with her down the hall towards the car, I pass a staff member and say, “I won!” But that is not what I am feeling, its just a cover for the trauma I feel.
I turn and look at Nani. Her shorts are off! I give up.
I walk her out the door in her diaper. The staff looks at us sympathetically. I am mad that I have lost. I am scared that I have lost. I feel like I failed her so badly. Why didn’t I just comfort her? I knew she was terrified.
We go home. She is willing to put on another pair of shorts, identical but for the color. She goes outside and sits on her playscape for an hour. Calming herself, hand flapping and rocking, soft cries now and then. I wonder if she feels betrayed. She comes inside for a drink and I ache to hold her. She would never allow that. The most she would allow on a good day is a kiss on the cheek and quick squeeze of her shoulders. And it was not a good day. Exhausted, sad for both of us, I wonder where I go to turn in my mother’s license.
There was something my Dad would say when we did something dumb as kids. He’d say, “What were you thinking? I’ll tell you what you were thinking! You weren’t.”
He would have had it right that day.