I’m the proudest boy mom to the two most amazing boys. One of those boys was diagnosed with autism two years ago and completely changed everything I thought I knew about myself and autism. 

The day our adventure in autism started was the darkest day of my life. 

I felt like I was being forced to go on a journey I didn’t want to go on. I did everything I could to keep from boarding that plane. I tried for the longest time to keep that plane from taking off. I just knew this flight we were reluctantly on was headed to crash and burn.

I feared the label—the word autism—more than anything I had ever feared before. 

I had feelings of shame. Despair. Loneliness. 

I talked about autism only when I had to. 

I never openly told anyone my son was autistic unless they asked.  

I thought with enough therapy, we would cure autism right away. It would be gone as quickly as it had appeared. No one would ever have to know. 

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I cried at the sight of puzzle pieces and I only acknowledged autism during the month of April.

Through all the resistance, our journey continued. Day after day. Month after month. Autism was still there.

But so was my son. 

The son I knew before the diagnosis. 

The son I had fallen so in love with since the first days our eyes met. 

I started to see that Autism had always been there, even in the moments that I had put my blinders on. 
I quickly came to the realization to not love and accept Autism was to not love or accept my son. 

Day after day, I started to open up little by little. 

But I was still very guarded.

See, autism can be a very controversial and confusing world to an outsider like myself. 

I never thought our hard was hard enough. I didn’t think we were worthy. 

My son was diagnosed Level 1. High functioning He could talk. He played with other kids. He made progress. Everyone I associated with autism had it so much worse than us. 
I didn’t want to seem ungrateful. I didn’t want to hurt anyone’s feelings. I didn’t want to offend anyone. Puzzle piece or infinity symbol? My son has autism or is autistic? High functioning? Labels? Was I suppose to celebrate the month of April? Was I a bad parent because I worshipped ABA and all the therapies? 

I kept quiet. 

I talked about the good things about autism. My new perspective. My journey to acceptance. The progress my son made. The beauty that this journey had shown me
thus far. 

Every time I got the urge to speak about our hard, I shoved it down. I buried it. 

I continued to show the Disney side of autism. That’s what people wanted to hear about right? People didn’t want to hear the negative. 

And then my son regressed.

I watched everything we had worked so hard for the past year disappear slowly. 

I tried to grasp and hold on to our world as I watched it fall apart. 

I had found myself once again in a dark place on this journey. 

RELATED: It’s OK to Grieve an Autism Diagnosis

Except this darkness was different. This darkness was darker than any black hole. Lonelier than any feeling of isolation I had experienced previously. The presence of even the smallest glimmer of light was absent.

The sheer hopelessness of our new reality engulfed me.   

And so I got mad. Mad at this journey. Mad once again at autism.

Or so I thought . . . 

I quickly realized it wasn’t autism that was the source of my anger. It was me. I was so very angry with myself. 

I realized I had created my current reality. I was the one who stayed quiet. I was the one who didn’t think our story was worthy. I was the one who stayed submissive about our journey. 

I sadly realized the current reality I found myself in—darkness, loneliness, and isolation—could be my son’s forever reality if the world stayed the way it was. 

And so I started talking. 

I started sharing our worthy story.

I started talking about the hard.

I started processing and validating my feelings through writing. 

Our world was still very hard. Sharing our story didn’t change any of that.

But I started to notice I was less and less alone. People willingly boarded the plane with us and joined our adventure. 

That darkness I talked about earlier, I started to see a glimmer of light way off in the distance. 

I finally started to feel our story was worthy. I finally felt we were seen. Seen by my parents, family, friends, other moms, special needs moms, moms who had a hard way—harder than ours. 

I started to see that people saw my son in a different light. They saw his challenges and his victories. They were able to celebrate with us.

That beautiful perspective autism had shown me early in our journey—I had selfishly kept that to myself. 

Now that I was sharing our truth, others were able to see the beauty of this journey through our hard. They were able to join us on our adventure. They WANTED to join us on this journey. 

And so I continued talking. 

RELATED: You Become the Advocate They Need When Raising a Child With Special Needs

And now a day hasn’t gone by where I don’t talk about our journey. I used to not be able to say the word autism. It was too painful. 

But what no one told me on that dark day two years ago is how this adventure would not only be an adventure about my son, it would be an adventure that would lead me to myself. My true self. 

Someone who isn’t ashamed anymore. Someone who speaks up for those who are different so they never have to feel less. Someone who knows the worth of her son and what he deserves. Someone not afraid to share and talk about the hard. 

Because it’s in the hard, that I truly found myself. 

My entire life was changed two years ago by one word. 

But it’s the best change that could have happened to me.

It’s a change I needed in the worst way. 

It’s a change more people in this world today need. 

And for that reason, I will continue to talk and share. 

I won’t keep quiet. 

Because it’s the ones who are the most resistant on this journey that need that change the most.

Originally published on the author’s blog

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Shannon Gainey

Shannon is a proud boy mom, full-time hairstylist, and passionate autism advocate. She lives in New Orleans, Louisiana with her two sons Murphy and Merrick. Her son Murphy was diagnosed with autism at the age of three. Shannon loves to volunteer her time to local autism support organizations and advocacy groups in hopes of creating a more accepting world for those with special needs. You can join and follow her and her boys as they journey through autism together on Adventures in Autism with Murphy Facebook page and Instagram and WordPress.

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