“That is not autism, he is just being 4”

I understand that you may look at my child sometimes and wonder if we got this whole “autism thing” wrong. I see your puzzling expression. I hear your words.  “This is just what 4 looks like.” I hear your words in my head. And, I hear your words in my heart.

Sometimes I look at my sweet little man and I wonder how we got here. I think back to all of the meetings and appointments and diagnostics that lead us to this spot. I recall the hundreds of conversations with doctors and specialists and counselors and family members. I remember the uncertainty. The pain. The heartbreak. And, if I stop and think about it too long, all of those feelings rush back over me.

There are moments along this journey that I question everything. Sometimes I pass by the room where Grayson is playing and at a glance I see him playing peacefully with his trains.  I watch from a park bench as he approaches a peer to initiate play. At home  we sit as a family to watch a movie. And, all around me I see things that feel and look so typical. How can this peaceful boy who seems so typical possibly have autism? ?

Perspective is interesting. Perspective changes the way we see the world around us. The journey along the autism spectrum changes perspective. Well, it changes everything. And, as everything changes eventually your perspective changes too. You learn that things are not always what they seem.  You begin to understand that you have to ask more questions, dig deeper, learn more. Be more.

And because you need to, you do. You ask more questions. You dig to new depths. You learn everything there is to know. You climb and climb and climb to be everything that your child needs you to be. And along that journey you learn to see things differently. You learn to look closer. Your heart learns to see the things that your eyes protect you from.

You see, Grayson is not simply playing with his trains. He is sitting on the floor rolling the trains past his eyes in a calming and methodical way. His eyes are spinning around and around and he becomes mesmerized by the spinning wheels. And, as he watches the wheels spin around he recites every single word from an episode of PJ Mask that he watched over a week ago.

At the park it may look like Grayson is initiating play, but when I take a few steps closer I see that Grayson is not making eye contact with the child. He is ignoring the child’s questions. Even though it is October he is obsessively asking the child about his favorite fireworks color, a question he has been fixated on since the 4th of July. The child struggles to understand Grayson.  Eventually, the child walks away.

Our peaceful family movie nights are moments of peace in between loud shrills imitating the sounds in the movie. Or, a quick elbow to my head replicating the way the spaceship flew through the screen. It is everyone sitting exactly where Grayson tells us to sit. It is Grayson holding the green popcorn bowl. It is no one else being allowed to take popcorn from the green bowl. It is orchestrated and contrived and we sit on pins and needles willing everything to go the way he needs it to go. Willing the peaceful moments to linger.

But just for a moment, sandwiched in between all of these behaviors and incidents and tantrums, he drawn me in with his big brown eyes and I enter his world. And from inside of Grayson’s world everything looks different. Inside of Grayson’s world, he is typical.

Perspective.

I do not know what it is like to have a 4 year old who is not on the autism spectrum. Grayson is my first child. Every “first” along my parenting journey is filtered through my very own autism perspective.

I do know what it is like to have a 2 year old who is not on the spectrum. It is different in so many ways from our 2 year old experience with Grayson. In fact, it is only as our youngest son moves through birthdays and milestones that we understand the true depths of Grayson’s symptoms.

As a first time parent you cannot know what you do not know. Before the diagnosis there were so many things that we chalked up to “just a 2 year old thing”. We were wrong. They were not typical 2 year old things at all; they were autism things. We know that now, but we did not know that then.

Too many times on this journey people say to us “that is just what 4 looks like”. These words are heart breaking. Because unless you have lived with a 4 year old with autism, you have no idea what 4 looks like in our house. I get it, kids are tough. 4 years olds are tough. They are persuasive and argumentative and irritable. They know exactly what buttons to push and when to push them. They are starting to figure out how to manipulate us and it is equal parts endearing and annoying.

And I get it, a lot of things that Grayson does may be typical of a 4 year old. But, before you say that to me remember this; my child is not typical. His life is not typical. Our parenting journey is not typical. Unless you have parented a child with autism, then this is just one perspective that you do not have. And, I hope it is one perspective that you never have.

Somewhere along this journey I accepted that my son is not typical.  I have already learned that he is so much more! So please, stop trying to make him seem typical.

JS

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