I am regarded as a calm, cool, and collected woman ready to take on a challenge at any moment. I’ve built up my resilience over the years and created a thicker than average skin by standing up to physicians, educators, systems, and even ex-husbands advocating for my kids. So, it might surprise you to find out how vulnerable I am and that I’m markedly susceptible to emotional injury.
I picked up a few new scars on a journey of a lifetime that began just a few weeks ago. In September, my husband gifted me with a fabulous trip to Europe for our fifteenth wedding anniversary. I spent weeks planning our trip, and then we embarked on a journey to Belgium, England, France, Austria, and Germany.
I should be regaling you with stories from the boat ride on the Seine, walking the cobbled streets of Brussels, touring Buckingham Palace, how I fell in love with Vienna and other incredible events that were checked off our bucket list. Most of the experiences were fabulous, but several were shadowed by our life with Autism.
It was my first trip to Europe, and it included bringing along our eleven-year-old son Luke. It would be challenging enough for any parent and child to travel overseas to experience new customs, sights, sounds, smells, and public transportation, but we also faced the additional challenge of coping with Luke’s Autism.
It doesn’t help that I often become anxious myself trying to prepare for every possible contingency to avoid a child in meltdown in an airport, in a public square, or while partaking in a group tour. In the “typical” world this might be called being co-dependent or even being a “helicopter mommy”. In my world of dealing with Autism and “special needs,” it is called front-loading, setting the expectation, preparing the environment, providing structure, scheduling, and mapping out the potential escape routes. These are the actions I must take as a Mom every day to help the world and my child engage with each other. It is a much bigger project when you are preparing for something you don’t have experience with yourself like visiting a foreign country.
But even with all the preparations in place tensions can run high and outbursts happen. Sometimes from the child, and sometimes from the parents trying to deal with the behaviors of the child. Things like sleep deprivation, hunger, miscommunications, lack of communication, and packing too much into one day, all play a role in how things are going to play out on a given day. When these outbursts happen, it is common for me to struggle for some time afterward from personal heartbreak, fear, anger, and grief. It never gets easier and even with all of the preparation it happens unexpectedly, like stepping on a landmine. I often feel ripped open. The wounds are especially painful when they arise between Robert and me. I want to sit down and cry, but I don’t.
Instead, I spend hours, sometimes days, fluctuating between shoving the pain down and feeling it lurch back up again in waves and I ruminate with a wide range of self-talk:
Buck up. What are you crying for?
You should have _!
Why didn’t you_?
You lead a lush life and have nothing to cry about.
You are so fortunate.
You can fix it so why waste your time being upset.
You can’t fix it so why waste your time being upset.
They (the perpetrator) doesn’t even know you are upset, so why are you wasting your energy being sad?
You’ll just make it worse if you_?
Stay positive.
You got what you deserved.
You should spend more time trying to figure out what to do next time instead of being upset.
Why are you wasting your time being hurt?
Don’t let the kids see you cry they need you to be strong.
It will make the kids anxious if you aren’t taking the lead.
You are strong.
Crying isn’t going to fix anything.
You don’t have time for this kind of crap.
You made a lousy decision what can you learn from it?
Why do I feel this way?
What did I do?
How could I have avoided this?
What should I have said instead?
Why?
What will crying solve anyway?
How are you going to be an example for others if you let this get you down?
It’s not bleeding, broken, or on fire so what is the problem?
Seriously, when is this going to end?
Just put your big girl panties on and get over it.
There is no crying in baseball.
As I write this, I am sitting on a trans-Atlantic flight back home to Houston. Luke is asleep and peaceful at the moment next to me. I am nursing a wound. At some point, the heaving in my chest will go away. The sadness always lingers for more extended periods, but soon I won’t have to fight tears, only my self-talk.
Next week I will see my girlfriends and share my stories. I will brag and show off photos of the places Robert and I have been and the food we have eaten. They will hear stories of our challenging times, the list of things we wished we could have done, and what we had to surrender to accommodate the needs of Luke and Autism. They will understand because they walk this path every day with their own uniquely abled children.
Then, one of the girls will tell a story about what happened in their family that will make me laugh so hard my grief will give way and I will cry. My tears will come through a sisterhood of sharing successes, hardships, and the often altogether absurd situations we find ourselves in with our children and aging parents. They won’t be tears of sadness, but tears from laughter. The ugly kind where you are laughing so hard you can barely open your eyes, and if you are my age, or younger and pregnant, you have to cross your legs too.
With each sharing of the story over time, the emotions will melt, and it will become less painful to tell. Eventually, the moments of pain and disappointment will become a part of the tapestry of the trip.
The injury itself never goes away; it leaves a scar. Hope, love, and friendship are the salves that mollify the pain and help me to heal. I am incredibly lucky to have all of those things with my partner in life, Robert, and my best girlfriends. That is how I deal with the pain of having a child with Autism.
