Processing an autism diagnosis is not easy. When my 2-year-old son was diagnosed with autism spectrum disorder, I had no idea how to keep moving forward. I had no idea how to be the mom that he needed me to be. I had no idea what to think and feel. And, I had absolutely no idea what to do next.
In many ways I am still going through the motions and the emotions of the diagnosis. My son’s autism does not exist in a bubble. It is exists in our life. Our crazy, amazing, chaotic, sometimes-messy life.
And, there are times when it feels like the biggest part of our life. It is around us everywhere we go. We cannot out run it. We cannot outsmart it. All we can do is work each and every day to be strong enough to survive it.
Believe me, I do not use those words lightly. I get that you may not understand why I would talk about my life in terms of survival. I get it, because I did not understand it at the beginning either.
At the start of this journey I did not understand the depth of pain. The emotional pain of watching our son struggle. The physical pain we experience trying to keep him safe from himself. The financial pain. The growing pain.
Autism is big. It should come as no surprise that the pain autism leaves in the wake is big too. So, we process our pain. We process our pain over and over again. Sometimes we get done processing our pain, and then we start all over again. And then again.
We will do this until is stops hurting. Because in my heart I need to believe that it will stop hurting one day.
After diagnosis, I was different. I felt everything differently. I started to feel myself change. I was a passenger on a journey that I was not prepared for. A guest as a party that I did not RSVP for. A parent chosen for a life that I was not certain I was capable of. And yet, there I was.
In order to move past the diagnosis, I gave into the emotions inside of me. I let myself feel what I needed to feel. I hoped that if I felt what I needed to feel, then one day I might be who I needed to be.
First I felt fear. I felt confused and bewildered by so many things that I did not know. I devoured every piece of information. I think this phase of my journey is best labeled “the Google phase.” I went in search of answers to my questions and I returned with even more questions.
Armed with too little information and too many questions I began to feel defensive. I looked for ways to disprove the diagnosis. I tried to poke holes in something that I did not even understand.
Not because I needed my son to be anything different then he was. That was not it. I needed to be the kind of mom who could fix things for my son. And this was the first time I could not do that. I could not fix the autism away.
As the defeat set in the defensiveness became anger. This specific kind of anger is hard to describe. It is the anger of a parent; helpless and powerless to protect their child from something that feels very big. Something very real. Something very permanent. It is a crazy kind of anger. It is an anger that makes you kick and scream and demand to know “why?” It is an anger that slowly creates emptiness.
And when the emptiness sets in, when there is no more anger inside of you, the sadness enters. The feeling of loss. The mourning. And all at once the sadness washes over you in a way that is both a relief and a burden. Relieved to be free of the anger. Burdened by the magnitude of the sadness. And then time passes and the sadness starts to feel normal, comfortable even. After a while you begin to accept that the sadness may never end.
But it does.
I learned that I had to feel the fear and the defensiveness, and the anger, and the sadness, and the loss. Each of those feelings is a part of a much longer journey. The inevitable journey towards acceptance. So I felt the things I needed to feel in order to be who I need to be.
This process is not linear. In many ways, yes, it is a progression. But the movement is not always forward. Sometimes I go around and around in circles. I spend a lot of time in acceptance. But, I am often drawn back to anger and sadness and fear. They are a part of this never-ending journey.
So I go back to those darker places from time to time. I stay there as long as I need to. And when I am done feeling what I need to feel, I fight my way back to acceptance. So that I can be who I need to be.
Autism is big. The pain is big. The sacrifices are big. But the love is big too. The pride of watching our son progress is big. The feeling of accomplishment is big. The commitment is big. The future is big.
Autism is big. But, I am bigger.