Life On The Spectrum

Chrissy Kelly Special Needs 0 Comments

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Today was Greyson's last day of school. And I might hate change even more than he does. Author Lisa Genova says, “The spectrum is long and wide, and we're all on it. Once you believe this, it becomes easy to see how we're all connected.” Life throws us into the cold water of change. I'd prefer to just stick a toe in at a time, but change doesn't work that way. I'm trying to think of the water as less painfully frigid and more exciting and invigorating. Change takes time to feel like a new normal. I always feel like I just got here though. No matter what “here” I'm talking about.

This morning we went to school a few minutes early as we always do. Greyson sat up front with me and opened and closed the sunroof over and over and over.

The sun was shining hot through the windows, the air conditioning was on cool – the perfect mix of salty and sweet. Sun beams would fill our car with magic. Doodle thought we were on a ride at Disneyland.

Jack the dog was in the passenger seat, window cracked just enough so he could poke his nose out and smell all the amazing smells.

The Rolling Stones song, “Wild Horses” was turned up loud on the radio. The guitar in that song feels like a sunset and tastes like honey mixed with tears. I'm listening to it now as I write.

Childhood living is easy to do

The things you wanted I bought them for you

Graceless lady you know who I am

You know I can't let you slide through my hands

Wild horses couldn't drag me away

Wild, wild horses, couldn't drag me away

I looked down at my legs and realized I had the chills. I noticed then that I was submersed in a moment so perfect that it was disguised as real life. Crazy good real life. I wondered how many times I miss them. I was grateful that at least this one I caught.

Real and perfect seem to lie opposite on their own spectrum. I wonder why we spend so much time chasing perfect. Why are we so afraid of real? Real is where the stuff happens. The human-making stuff.

Good times make people have fun.

Hard times make people.

Imperfect people with beauty, depth, empathy, hope, faith, problem-solving skills and even humor. Really good people.  

So much of life is a spectrum, a term that was first fully understood when we learned that Greyson had autism. And then again, in new and different ways when Parker was diagnosed. It's a repeating message in my life –  something the universe is hell bent on teaching me. I'm realizing the hardest times can either ruin us OR teach us the greatest gifts imaginable. Happy times are my favorite, but they don't teach me squat. They don't make me better. They don't make me stretch outside of my comfort zone.They don't remind me what is important.

“Where are they on the spectrum?” I'm frequently asked in regards to the boys and autism. And there really isn't a simple answer, but I offer one anyway because neither one of us has time for a six hour response. “Somewhere in the middle” is what I say. Which is true. Both of them are completely different and have their own strengths, but both still lie somewhere in the middle.

People often assume Parker is “less autistic” because he is more social, even tempered and flexible, can speak words clearer than his brother and is usually a pretty happy little guy. I think he's just different autistic. Parker has significant communication delays. He struggles with receptive language –  the understanding of the spoken word. Only recently he started to understand and go to the door when I tell him, “Let's go bye bye!” Parker also does not speak more than 2-3 words at a time and usually it is only when prompted. Although Parker is more socially engaged – he interacts more with adults and less with children. He does not engage in play with peers his own age. Parker does not have many behaviors in line with autism – he doesn't need things a specific way. He isn't sensitive to sounds. He tries new foods. He doesn't fixate on an items parts. He plays with toys as they are meant to be played with (i.e. Grey lines cars up. Parker makes them drive around).

Grey is the Spring weather. He is birds singing and rainbows and sudden gray skies and tornadoes. His weather always passes quickly. He shocks me with his knowledge of receptive language – even though he can't speak much, he understands so much. He learns fast. When he gets something wrong – he frustrates slower than his brother. He always tries again. He has apraxia – his brain and mouth can't properly work together to get out the correct sounds. He thinks he is saying it correctly so it's extra frustrating for him when we do not understand him. For example, he says “mies” for fries, which we now know but it took a few days/weeks to figure it out the first time. He frequently leaves off the end sounds in his words. Cup is “cuuuu.” Grey has more behaviors in line with autism – sensitivity to sounds and new foods and new situations.

And then they are so much the same. Moppy headed giggly boys.

They think our back yard is the greatest place on earth. They think a sunroof is a good time. They love the pool, swinging, being outside and long wagon rides. They remind me of how little it takes to be happy. Truly happy. I think adults get so caught up in life that we forget. Seriously. Why is it so hard to be happy? Why is it so hard to remember what makes us happy? Why is it so hard to be a grown up that still plays?

Like me, it's impossible for them to hide their feelings.

Most of my thoughts lie opposite on their own spectrum.I'm scared of being ordinary. I want to stand out. I want to do remarkable things.

Also, I just want to blend in, mesh together with the people around me so that it feels like home.

I want adventure. I need adventure! I'm empty and achy in its absence. I'm so tired of my Groundhog Day existence.

But I also need the same. I crave the same. I love the familiarity of our routines. I use the same mug for my oatmeal every morning and that brings me great comfort. My world is predictable. A balm that soothes.

I think many of us lie somewhere in the middle of our own spectrums in our own lives. Falsely thinking we need to be striving for one side or the other, when all we really need to do is find the good and perfect moments where we already are right in the middle.

This piece originally ran in our 23rd print magazine WILD.

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About the Author

Chrissy Kelly

Chrissy is scared, brave and does it anyway. She loves big and laughs loud. She writes about the good life with her two boys on the autism spectrum at .

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