I will be the first to admit that there are a lot of days when this journey feels like too much. Days when autism seems too big and too scary. Days when I am weak and not enough.
In order to fight against those feelings I do important things to take care of myself. About a year ago I started talking with a therapist who specializes in families with an autism diagnosis. I cannot tell you how much this has helped me and my family. In our world so many things are about our son and his autism. It can get really easy from day to day to forget to focus on the three other people who live in this house. Taking to the therapist helps me to refocus. Helps me shift my perspective when shifting is needed.
Last summer my therapist said something to me that has completely changed my outlook on autism. And I guess my outlook on every day of our life. This journey. My Marriage. My family and friends. Me.
I was telling him a story about a trip to the zoo the week before. I explained to him the pain I felt when we could not experience life the way I saw other families experiencing life. How often even the simplest of outings or occasions were just too hard for us. I told him I watched my friend’s Facebook newfeeds and filled with envy and sadness.
I told him that all I wanted was a normal summer day as a normal family on a normal trip to the zoo. No meltdowns. No sideways glances. No wishing I put him in his “Autism is my Super Power” shirt just so that they would understand. So that they could look at him and know that they were seeing autism and not naughty.
I started to cry. It was June and we were only four weeks into the summer. I just was not sure how I could survive another summer feeling isolated at home behind the safety of our backyard fence.
I felt pain for myself and for my family. But mostly I felt pain for my son. Pain that his experiences were often colored by meltdowns and behaviors. Pain that he could not experience life differently.
My therapist looked at me sympathetically. He was quiet just long enough that I started to feel uncomfortable with my vulnerability and the way I had exposed so much of myself to him. And just when I opened my mouth to explain away my emotion, he started talking to me. And the words he spoke are words that I will never forget.
“Jessica, if I would ask him today if he enjoyed going to the zoo, what do you think he would say to me?” he asked.
I thought for a moment and then answered honestly, “I’m sure he would probably tell you that he loved the zoo. That the elephants and the lions are his favorite.”
“So, why do you think he is missing out on something?” he continued.
I grew a little defensive that the answer was not obvious, “Because there is another way to experience the zoo. People leave the zoo every day without kicking and screaming and hitting their parents across the face. Families drive home from the zoo every day without the autistic son screaming in the back and the mom silently sobbing behind sunglasses in the front seat.”
“You are right. There is absolutely a different way. You know it. Your husband knows it. But Jessica, he does not know that. He does not know that his experience is anything different than a normal day at the zoo. Because that is his normal. That is all he knows. Those feelings and behaviors and the way his brain works are all he will ever know. But Jessica, you do know that it can be different. You have experienced peaceful and tranquil family outings. You have had a lifetime filled with your normal experiences. You are right to feel pain. To feel a loss. But free yourself from the feeling that you are failing your son by not giving him a different experience. Free yourself from his pain, because he is not in pain.”
I sat there quiet for a long time, tears streaming down my face. Because, he was right. The pain I felt was my own pain. My own loss.
I lived inside of that conversation for a long time after that appointment. I reiterated his words to my husband and to my mom. I spent time processing the words and the way they made me feel. And I realized that the words made me feel free.
His words changed my perspective. You see the autism diagnosis goes to just one member of a family, but the impact extends to each of us. We all live inside of the autism bubble. We all live with the symptoms and the behaviors each day. Autism has taken things from all of us. But no matter how close the autism brings us; it is still the great divide inside of our house. My son is on the autism spectrum; and The rest of us are not. The way we experience the world is completely different. And he will never experience the world like we do. He will never know that he is missing out on a different kind of experience. He will only know life the way he knows it. He will only know life with autism.
There is peace in my new perspective. And more importantly, there is a lot less pain. When our experiences do not go exactly the way I hoped I remind myself to take a deep breath. To remember the fun. To look at my children and the smiles on their faces. To tell myself over and over again that life does not have to be perfect to be wonderful. And just like that, it is. Imperfect; but completely wonderful.
For the last several months our outings have been much better. We are out in the world living our truth and making memories. Maybe it was the perspective change, maybe it is growth, or maybe it is just dumb luck and a good couple of months. But either way, I’ll take it.