Piece by Piece: A Journey Through Autism Parenthood

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Have you ever purchased a very challenging jigsaw puzzle just for the sheer joy and feeling of accomplishment you’ll get once you’ve successfully assembled it? The larger the quantity of pieces the better right?

As I stare at those 5,000 pieces dumped onto my counter top and begin sorting and flipping them over, it becomes overwhelming that each individual piece doesn’t tell me anything about the completed picture.

Where do I start?

Is the best method for success gathering the corner & edge pieces to form an outline or should I begin dead center and work my way out? It’s hard to comprehend how those thousands of random shapes will fit together to reveal something unique and beautiful – but it always does.

To me, parenting a child on the autism spectrum resembles that same overwhelming feeling of uncertainty and chaos of scattered puzzle pieces everywhere – which is ironic because the puzzle piece is one of the internationally recognized symbols of autism.

Not knowing where to begin when you can’t easily link together the ‘normal’ pieces of development because those milestones are delayed. You begin to question every intuition and gut feeling you have.

Maybe I’m overreacting.

I’ve gone through the ‘autism characteristics’ checklist and can’t confidently say that’s what I’m seeing.

Our pediatrician doesn’t seem concerned.

Traditionally, parents wait lengthy periods of time for a specialist to shed some light as to what is specifically wrong with their child. We waited over a year.

As our coveted appointment finally arrived, I was cautiously optimistic but ultimately ill prepared for the matter of fact, uncaring tone by which the autism diagnosis was doled out.

Like rapid fire, I was told ‘severe autism’ and “nonverbal” before being ushered out of the office with nothing more than a label, an infinite number of unanswered questions and a grim prognosis for the future.

I know children don’t come with instructions; however, autism families deserve a pamphlet at the very least as minimal preparation for the many challenges that come with raising a child on spectrum. I would’ve done cartwheels had someone outlined some of the most impactful behavior calming tips, tricks for introducing new foods or strategies to encourage communication!
It’s through observation, mimicking and basic instinct that most children will learn to utter new words and phrases, yet my son lacks those innate capabilities.
Since the well-paved path to a tried-and-true communication plan was (and still is) non-existent, I read every book, tried every therapy and invested in each method of intervention available back in 2006 with the sole focus on finding my son’s voice.
Sadly, one medical ‘breakthrough’ after another, touting unrealistic promises and guarantees for success, exploited my desperation and left me emotionally and physically devastated.

Then one day it hit me HARD.

There are many forms of acceptable communication beyond the spoken word – body language and spelling have been his prominent methods.
He’s already worked extremely hard to be part of a world that makes no sense to him – one that often misunderstands and judges him unfairly, so why would I spend another minute trying to cram his perfectly created individual piece of society into a neurotypical puzzle that he doesn’t fit into?
I learned many years ago that I needed to meet him where he was and learn from HIS cues. My son WAS communicating with me with his hands and eyes and has been extremely patient while waiting for the rest of the world to take notice and appreciate what he has to say.

It has taken years, almost 21 to be exact, for me to fully appreciate the beauty and lessons found in the differences between my son and his neurotypical peers.

While autism presents like a puzzle, my amazing and intriguing experience has come from learning to help my son assemble his unique pieces in a timeframe and process determined by him. I recognize that his puzzle may take longer to construct, but I will no longer force pieces together that just don’t fit.
Only then can I fully see the masterpiece of him – what he thinks, believes and enjoys. A unique puzzle unlike anyone else’s in the world.
Throughout our life, we are presented daily opportunities to gather more pieces to contribute to our own individual puzzle. We have no idea how our experiences today are going to mold us and shape us to fit into our completed lifetime picture.
Being autistic does not devalue or diminish my son’s contributions to this world.
We don’t all have to be the same – look, walk, talk, think and learn similarly. Of those 5,000 pieces scattered across my countertop, not one is identical but they work together to make the completed product that much more spectacular.
What an incredible feeling of satisfaction when the pieces perfectly slide together – just as they were meant to all along.
Written by Laurie Hellmann of Welcome to My Life – Skyler’s World
Laurie Hellman

Laurie Hellmann

Laurie Hellmann lives in Indiana with her husband Josh, her 17-year-old NT daughter Kendall and 19-year-old son Skyler - who has been diagnosed with severe, non-verbal autism and ulcerative colitis. Laurie authored the memoir Welcome to My Life: A Personal Parenting Journey Through Autism, hosts the podcast Living the Sky Life – Our Autism Journey and speaks on various topics related to autism and being a lifelong parent caregiver. The goal for all platforms is to empower families faced with an autism diagnosis as well as those who are open to learning more with insights, tools and resources to do so.

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1 Comment

  1. Lisa Evans on March 27, 2024 at 12:04 pm

    Hello Kate, I too have been navigating the autism world with my adult son, who was diagnosed late with Aspergers, a form of autism. I received the diagnosis when my son pre-teen. Just as I read your story above. There isn’t a road map, the puzzle wasn’t as clear of a path that I was hoping for my son, for we also need to figure out how to figure out how his life is going to be as a person of color. I was wondering how to continue to assist my son as well as other mothers with children that are also on the autism spectrum. I went to school to pursue a BS degree in Human Services to be able to help people be as successful as they desired for their lives. I am still searching how to do that. Time waits for no one, my research has helped my son a little, however we continue to have multiple roadblocks ahead in his personal life. I was just made aware of you, another mother in Minnesota who loves helping her child learn how to navigate this world. I am hoping to connect with you, so I can help my adult son, whose having a challenging time navigating this world.
    Thank you for listening.

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