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Your Story Matters

Welcome to My Life... Navigating the World of Severe Autism

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Laurie and Skyler (2015)
Laurie and Skyler (2015)

We each have a story. In fact, each of our stories is as unique as our own fingerprints … our own DNA … our own life’s tapestry. Some of us openly share our stories, realizing that in sharing we are connecting. Others of us hide behind them, hoping that the real story never breaks through the story that we tell others and the story that we tell ourselves.

Yes, we each have a story, and I am ready to share mine.

Welcome to my life.

I’ve often been asked: “How do you do it all and always with a smile on your face?” 

For those who first learn of my family’s autism journey, this question quickly becomes a topic of our conversation. It’s a good question, I know. And I wish I had a profound answer, but the truth is, many days I’m merely hanging on by a thread. 

My smile is a part of my story. It’s how I get through each day as a mother to a son who is 17 years old and nonverbal autistic.

Often times — especially these last few months in quarantine — I feel like a prisoner in my own home. We have child safety gates blocking every doorway to keep my son, Skyler, from running room to room like a tornado throwing everything in his path. Gates are strategically placed in front of all the bathrooms so he doesn’t eat our coveted toilet paper stash, too! Being that both myself and my 15-year-old-daughter are only 5’2” (with good shoes!), those gates are practically impossible to scale over quickly, so we constantly trip over them and they are sent crashing to the floor.  

And oh, the noise in and of itself can be unbearable! If it’s not the gates slamming, it’s Skyler’s incessant banging on walls, doors, counters, tv screens and himself 24/7! It honestly gives me a migraine and daily sends my stress level to a 50 on a scale of 1 to 10! While I know the poor kid is just expressing his pain and frustration because his belly is in knots due to his ulcerative colitis and he’s unable to verbalize exactly what is wrong, that doesn’t mean his ways to communicate aren’t overwhelming to all of us, me included.

Why then do I smile and laugh when I am frustrated at how confusing this disorder is and the challenges that it brings? 

The answer is simple really. Autism is a part of my family’s journey, and it forever will be. A long time ago I accepted that my family does not fit into an “ordinary” mold. We do what we can to get through every challenge and find the beauty in it. It is our daily mission to ensure that autism does not stifle our dreams — ours or Skyler’s.

Our attempt at normalcy and happiness as we define it is not diminished. We get the choice to either laugh or cry and 90% of the time I choose laughter. I’m only human and an occasional meltdown is inevitable, but I just pick myself back up and remind myself that tomorrow presents another opportunity to smile.  

My smile helps me cope, but it also helps me refocus. It’s how I navigate working full-time after sleepless nights with him banging on the walls. It’s how I find my normalcy in the thick of what I’m realizing isn’t a part of everyone else’s normal. It’s how I see the good in our lives even when our lives feel upside down at times. My smile — along with my humor — helps me LIVE! And it helps our family live too.

Our story matters. And your story does, too.

I decided to share our family’s raw and real story with others because our story just may be the catalyst to empower another family to find the good in the struggles … it just may be what another family needs to make it through to another day.

Our story is chronicled in my book, Welcome to My Life: A Personal Parenting Journey Through Autism, which gives readers deeper insights into our family’s experience with autism. It’s honest in all ways, which I hope will help people who both face autism daily in their own lives or who are open to gaining an understanding of the beauty and the challenges that autism brings to the lives of many.

Each of us has a story. And each of our stories matter. Possibly, our stories are meant to be interwoven and together we can help change the lives of others … maybe, even in the thick of the difficult times, we can find new ways to help others smile.

Laurie is the author of Welcome to My Life: A Personal Parenting Journey Through Autism which can be found on Amazon in paperback and Kindle eBook editions. Laurie is also host of the podcast Living the Sky Life – Our Autism Journey found on Apple podcasts, Google podcasts and Spotify.

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