The permanency of the diagnosis has always been the hardest part of my son’s autism. Nearly three years ago at age 2 when we first received his diagnosis; and still today.
“Lifetime diagnosis.” My son has autism spectrum disorder, and he always will.
No matter how many times I say those words, they never feel more natural. It does not get easier. You do not wake up one morning with a total acceptance that autism is and always will be a part of your life.
Autism is a journey; and the acceptance is a journey too. You learn to face it a little bit at a time. At first because you have to. And then slowly over time because you realize that acceptance is an important part of moving forward.
You learn to be smart because being smart helps you be strong; and not because you want to outsmart autism. You learn to run because you want to keep stride with your child; and not because you want to outrun autism.
You start to see autism for what it really is; a race with no finish line. A journey with no end. I use these words over and over again. I say them to myself; and I say them to others. I know that forgetting those words makes this journey harder. Forgetting the simple truth that they hold is just too painful.
But I am human. And from time to time I make mistakes. From time to time I forget to take my own advice. I forget because sometimes forgetting feels so good.
Sometimes the behaviors and meltdowns are minimal. Sometimes we can more easily predict and anticipate the hurdles. And in those moments it starts to feel like a rhythm. An ease. It is not perfect, but it is so much better than so many of the moments that came before. It is a welcomed calm.
And tangled up in the goodness of the calm, the storm feels so far away.
I know better. I know that there is ebb and flow. I know that this journey will take us up an down and in and out and around and around over and over again. I know that the unpredictability of it all is the only thing that is predictable.
But I also know this; sometimes the good is just so good. Sometimes it is so welcomed and necessary after the bad. Sometimes giving into the good is an important part of the survival. And, for a few moments in time it is almost the way I imagined it could be. It is almost a version of normal that I thought I may never know. And the unexpected comfort of an unfamiliar normal is so alluring.
I dive in. I revel in the ease of it all. I begin to count on the ease. I make plans that work within the parameters of our new found rhythm. I allow myself to picture a life without meltdowns and behaviors. I crawl up inside of the goodness and the calm and I think that maybe I could just live there forever.
But inevitably, the storm will hit; because it always does. And the storm will be so much worse than before. Not because the intensity or frequency will be worse than the last storm, but because I will not be prepared. My guard will be down. I will be too immersed in the good to prepare myself for the bad.
And when the storm settles in all of the familiar feelings set in. Anxiety, sadness, anger, fear. And before I know it I am in the eye of the storm. Face to face with the reality of autism. The journey that does not end.
And I feel so many things. Mostly I feel foolish. I feel silly for being duped by a few weeks of good behavior. For letting myself believe that we could really manage the autism out of our lives. That we could somehow outsmart and outrun it. I feel foolish for the hopefulness. And I feel foolish for all of the plans I started making in my head. Plans that may never be a part of our real normal. Autism normal.
I feel foolish, but I also feel sad. Sad because the reality that this journey has no end never hits harder than when you let yourself think, even for a moment, that it just might.
A lifetime diagnosis. A lifetime walking this journey. Of questions and uncertainty. Of doing the best we can. A lifetime of moments. Moments of hope and moments of hopelessness. Moments of joy and moments of pain. Moments of strength and moments of weakness.
And all of the moments will have one thing in common; my son has autism. It is not going away. And some days it hurts to remember that. Some days autism seems so far away. And then there is is; sitting in the middle of everything I love.
Today I tell myself to always remember. To protect myself from the storm. To find joy in the good moments without losing my guard. A lifetime journey for a lifetime diagnosis; one single step at a time.