An Ocean of Emotion

 In 2015, when my daughter was diagnosed with Autism, my life ended. Or so I felt. This wasn't the type of autism that parents work through and watch as children flourish, navigating traditional education and eventual life on their own, but instead the type of autism that needs support, most likely forever. 

Initially, people would pause and say "you were born for this" or "if anyone can do it, it's you" but in that moment, in that season, I didn't think I could and there are still days that I continue to feel as if I can't. As if autism is too much. There are also moments of elation, where I pause and think, I'd never dreamed we'd be here while she tries to talk to a family about a baby or a young child and their milestones and in that moment, someone sees her for who she is and engages and accepts her yet still there are other moments, where I catch my breath thinking, "will she ever be able to...." and those moments cause me to pause, reflect and realize that I wasn't born for this however I am called to learn how to do this. 

Today, autism has infiltrated my life, our family's life in so many ways. Today I work in the field and while my job can be challenging, it's also my calling. My favorite part of my job is when a mom calls and she's desperate for help. In those moments, she may speak, voice quivering, ashamed of how she feels about a recent diagnosis, or she may even cry, and I am quickly sent back to my own beginnings learning to accept this diagnosis. I pause and remember our diagnosis day, where I felt numb, hurt, angry, and scared all at once. When we received the diagnosis, I was embarrassed by my feelings. My child was healthy; she was present and there were worse diagnoses a parent could hear. Because of that, I never felt I could mourn. Mourning however is okay and perhaps even necessary. It was okay to mourn the expectations I initially had for my child, my family and our life. 

So, I tell the parents, it's okay to feel. It's okay to recognize that this journey isn't what you wanted. I remind these parents there will be days you smile and relish in the opportunity to slow down and see the world differently than other families. There will also be days that nearly break you. And both those scenarios will happen again and again. 

I used to say navigating life, raising a child with autism can feel like a marathon, then I changed after a few years and dubbed it "an Iron Man" but today, I have another analogy I frequently share with newly diagnosed families. 

If you know me, it's no secret the ocean is my favorite place to be. I watch incessantly as waves lap at the sand, sometimes peaceful and in sync with the wind, while other times, the ocean is so calm and clear that it looks like you could walk out and walk forever in its beauty and then there are other times, that ocean is so violent, so angry, that with one wrong step it can sweep you away and take your breath in an instant.

The ocean is how I view autism. There are days where there are no roadblocks brought on by autism. The day is clear, like the ocean, as smooth as glass with methodic waves that gently lapping against the sand. On those days, my child is able to attend school and there are no phone calls about behaviors or discord. She may color and play. Take her medication without being upset. On those days perhaps she even uses her own words to communicate her wants and needs. Some of these calm, clear days and on she uses her own words to talk to others. When it's clear, it's easy to have hope, to see a bright future and begin to plan for the future. 

Then, there are days when the ocean is a bit unsettled, on these days, it can be exciting and anxiety provoking all at once. Those days it's a little choppy. There may be mild aggression, she may try to elope, she may escalate her voice and become unsettled.  On those days, when the water isn't as clear, when the waves are stronger the ocean, like autism the ocean churns up a little something inside that causes me to pause, reflect, and sometimes feel overwhelmed. I pause and wonder if this will go on, what was it that caused this and still on those days, autism can be beautiful. That reflection will often remind me where we once were and perhaps where we are going in this life.

And then there are seasons when a hurricane barrels in, creating a flood of emotions. It can wreak havoc not only on our household but sometimes outlying family members and the community at large. On those days, you may find yourself doubled over, weeping for what your child faces, for what your family experiences and with a fear so deep there aren't words to express just how you feel. On those days, it's okay to just breathe because once the storm has passed, you will clean up and maybe your family and community will rally to help you rebuild and often there is a calm after the storm. 

For a long time, I didn't allow myself to mourn our autism diagnosis. Instead, I tried to pretend that everything was okay until one day I realized that if I felt like this, there was certainly someone else, somewhere feeling the same thing. Most likely they stood in silence, afraid to allow those feelings to surface, afraid those feelings were bad or wrong but in time, I realized those feelings are valid and real. 

Today, ten years in, we continue to navigate this world. Life with autism. Life with elopement. Life with aggression. Life with limited verbal communication outside scripting and echolalia. No matter what ocean we are navigating, one thing has remained the same. When my daughter was diagnosed with autism, I would repeat the mantra, "if I can make this journey easier for one family following behind me, my daughters' diagnosis is worth it". While I am not sure that's happened yet, I continue to live by that statement with faith that while I wasn't born for this, there is beauty in autism, and I can do more than survive, I can learn to thrive.