Today I went to my son’s school to participate in his science experiment presentation to his class. As my husband and I walked into the school I recalled the countless times in the seven short months since 4K began that I walked these halls. Orientation, parent teacher conferences, more IEP meetings than I can count, concerts, forgotten shoes, and early pick-ups. This was a place I would come to know very well over the course of my son’s education.
Today I walked down the hall excited to share a special day in the classroom with my son. As I walked into the classroom I saw my son. He was sitting on the floor in a cardboard box. While the rest of his class played together outside for recess, my son sat in the classroom in a cardboard box.
I looked from my son over to his teacher. She saw the look of surprise on my face and explained that he was not happy with his place in the line-up for recess resulting in a meltdown. He became so worked up that he could not recover.
And, because he could not recover, he crawled into the box. A place where he felt safe.
There are a lot of moments as a parent that test your endurance; both physically and emotionally. I have experienced incredibly high moments and I have survived extreme lows. I have seen and heard things along this autism spectrum journey that should not be a part of any parent’s journey. But they are a part of mine. They are carved into my brain. They are burned into my heart.
And today, I just cannot see past the vision of my son sitting alone in the cardboard box.
You may be wondering why there was a cardboard box in the classroom. But all parents know that children can find joy in the simplest of things. The box becomes whatever they need it to be. A fort, a house, a treasure chest. Today my son needed that box to be a hiding place. And so he crawled in and hid from the world.
What they do not tell you after an autism diagnosis is that it gets much harder before it gets easier. And then after it gets easier, it gets harder again. They do not tell you the pain that you will experience over and over again each time that you are unable to help your child.
As my son grows older and his same aged peers grow older; I feel the presence of autism in our lives even more than I did at the beginning.
When my son was diagnosed at age two the concept of autism seemed so abstract. I could certainly see his symptoms with my own eyes. I lived those symptoms alongside him every day. But, most children at ages two and three develop at different rates. So, the differences between my son and his same aged peers were more easily muddied in the water.
Today the differences are crystal clear. I stand in the morning school line with my son and watch in agony as he struggles to make social connections with his peers. I watch as other children carry on two-way conversations with ease. I watch as my son drops words and phrases into the world. And his words land like rocks.
The children do not understand the way he communicates. And because they do not understand, they cannot communicate back to him. And I cannot help but relate to these young children, because I myself often struggle to understand the way that my son drops his words into my own life.
When most people hear the word “treatment” they think of something that helps you get better. But, I think using the word treatment to describe autism therapy is misleading. Because autism changes. It evolves. It expands and retracts. It goes up and down and then back up. It can be everything and nothing. But it does not get better. We get better. We get stronger. And we help our son to be better and stronger too.
Today I walked into my son’s classroom and saw something that I was not prepared for. After two years on this journey I am still not prepared for those moments. The moments that cut to the core of your heart. Because who can prepare for that? What experience in this world can help a mother prepare to see her child in pain?
The answer is simple; no amount of time or experience will make those moments any easier.
As I reflect on the moment now, I realize the irony of my reaction to the sight of my son tucked away in that dark box today. I did what I always do when I see my son struggling or in pain; I crawled into my very own emotional box. A box that I keep tucked deep inside of me. A box that is for me and me alone. There in the safety of that box I let myself heal. I hide from the world and the images that I am too scared to face. The sounds that I do not want to hear. I stay there in the comfort of that box until I am better. Ready to face the world.
And then I step out of that box inside of me and re-enter the world. Ready to move forward.
My son eventually emerged from his cardboard box today. Together we presented his science experiment to his class. He felt joy and pride as he held the spotlight in front of his class.
I may not be able to get the image of my son in that box out of my head, but I do understand it. My son went into his box to escape the world and he came out better. Ready to face the world.
This is one of the many things that I am learning from my son. Sometimes we need to crawl into a place where we feel safe. And come out when we feel better. Ready to face the world.