Summer Vacation with Autism
written by Lisa Dempsey
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 new place on vacation.
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 the preparation it happens unexpectedly, like stepping on a landmine. I often feel ripped open. The wounds are especially painful when they arise between my husband 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.
He 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.
With each sharing of the story, the emotions melt, and it will become less painful to tell.
Eventually, the moments of pain and disappointment will subside into the tapestry of our life with Autism. The love I have for my child and our family will be the thing that keeps me moving forward.
Lisa Dempsey is the founder and CEO of the Forgotten Wishes Foundation, whose mission is to inspire a sense of belonging and be a source of joy for people with disabilities. Lisa belongs to a society of women who share the delights and dilemmas of raising children and caring for adults with special needs. She is a creator, explorer, and advocate and shares her more personal experiences on her blog, Cluck Howl Crow. On most days, Lisa is busily working on expanding awareness and engaging with the people she serves through the Forgotten Wishes Foundation.
Lisa is happiest when she and her husband, Robert, are gathered around the kitchen table with their family. To refuel her mind and body, Lisa travels in her trailer named Rosemary von Wunder, takes walks on the beach searching for shells, or heads to New York City to binge-watch Broadway Musicals and eat Junior's Cheesecake. Lisa and her husband Robert have been married for 18 years and have four children. They live in Houston, Texas, with a teenage son with Autism still at home and two Cardigan Welsh Corgis, named Zeus and Mick.
Lisa is an active caregiver to their adult daughter with I/DD and supports her desire to live more independently in their community. They are "Momsie and Popsicle" to their two young granddaughters. Lisa is grateful to have a circle of extraordinary moms christened "special friends" whose presence spans over twenty years and adds a copious treasure to her life.
Forgotten Wishes Foundation
Our mission is to be a source of joy that inspires a sense of belonging for people with disabilities. We focus on bringing awareness to this often forgotten and marginalized group of people and remembering them personally with birthday cards, holiday greetings, and small gifts they receive in the mail.
