This is the second post in our series, “This is Autism,” which captures snapshots of our children’s lives across the entire spectrum.
Autism shines a mystifying color within my child’s spirit. His energy, enthusiasm, confusion, emotions, and personality reek of an ever-changing orange hue. It is like an intense painting, that when immersed in a certain light, never looks quite the same. As a parent, this is disorienting, like a carnival ride. We are automatically signed up for every ride autism creates: up, down, or all around. So here I am, the mother of a child with autism, along for the ride.
My child relies on his exceptional visual memory to navigate and survive in this perplexing world we call “normal.” As a toddler he reminded me of the character Curious George, forever getting into circumstances which could lead any mother to pull her hair out: always on the go, in a hurry to explore and get to the next fascination.
Language and communication have always been challenging. Watching him try to make the accurate connections needed to understand directions, emotions, and voices can be upsetting. It takes him longer to process and send the signal to his brain to do what is needed to follow through. I find myself constantly adjusting strategies, digging through the bookshelves to revisit old visuals and ideas that worked when he was very young.
Many speak of autism and refer to it as a “puzzle.” For me, it is a journey, about preparation, planning, and always expecting the unexpected. But it’s not a straight path for us. There’s a lot of doubling back. It is difficult to always be one step ahead at all times. Many times I have over prepared and many times I have underprepared, constantly learning a new lesson along the way.
On this autism journey, I have felt the full spectrum of emotions time and time again. This child of mine shines so many rays of orange. He can be extremely intense and fixated on a specific need or interest where his creativity glows like a flame. Other times, he can be unsteady and frightened, consumed by his anxiety like a caged animal and the flame wavers needing oxygen to stay lit. Then peace descends, affection comes out and his flame shines tranquil and consistent, full and orange. But the same flame that provides warmth can rear its ugly head, and at any moment burst into a fire that burns out of control.
It is in my nature to be the resilient foundation that supports my child’s autism journey. It is important for the person who knows the child best to educate, inform, and encourage others about strategies and ways to support their child. Every day I learn something new and adjust what I am doing or tweak this or that to support a child with high needs and challenges. At times my confidence is tested and I find myself wondering, “Can I do this, can I keep going, what will happen in the future?”
Then I turn again to the supports that have gotten us to this place in our journey. I think of my child, his ever-changing rays of orange and know that I am destined to mother this unique, mysterious, beautiful child. It is our destiny, together; to sustain that fire which draws other families in, creating a circle that is illuminated and guided by its glow.