Normal, if only for a day…

grayson-blue-manI know that the word “normal” is taboo. We are supposed to say “non-typical”, or “living with difference” or “different learner”. And, we all do the best we can to remember all of the rules for what we should and should not say. We find socially acceptable ways to express our feelings. We put rules and boundaries in place to protect the feelings of others. We live by those rules. And, that is a good thing. It is good to be conscious of other people and to choose words carefully.

But last night, despite all of my understanding of the rules that govern difference, “normal” was exactly the world I was looking for. And, so I used it. I used it unapologetically. I looked over to my husband in the car last night and said (with a smile beaming across my face) “It was so wonderful to feel normal today.”

Yesterday we attended the Autism Speaks Blue Man Group’s sensory friendly performance with our sons. I went into the day with the intention of providing an amazing sensory experience for my son with Autism Spectrum Disorder, but I came out of the day with so much more. You see, when we bought the tickets we were only focused on the experience and what our children would take away from it. What I did not expect was the feeling of peace that the day would bring me. A feeling of comfort. Of Freedom. A feeling of success along a parenting journey that is often met with failure.

As we sat in the theater I watched in awe of everything happening around me. I sat surrounded by children and adults of all ages living with autism spectrum disorder. People who deal with difference every single day. People who work hard to manage their symptoms. People trying to find their place in this world. People who often struggle to find the world they need in this world that we live in.

And, on that day, those two worlds collided in such a beautiful way. You see, at this event no one worried about making too much noise. Nobody feared that they might “ruin” the show for the other viewers. People did not hesitate to wave their hands in the air or talk as loudly as they pleased. In that moment, in that place, no apologies were necessary. There was no scrambling to minimize the symptoms. There were no parents crying tears of shame in the bathroom stalls. There was no hurriedly packing up and running out to safety. That place was their safety. It was their day. It was their world, and they were so kind to invite us in.

It was the first time in a very long time that I let my guard down in public with my son. I did not know what to expect going into the day. In fact, in the opening moments of the show I did my typical routine of assessing our fastest escape route. And, as I scoured the room for my exit I found something I did not expect to find. I found permission to let go. To my right I saw a young girl rocking back in forth in her chair. And beside her the mother rubbed her back and chatted with a neighbor. In front of me a young boy sporadically spurted words and phrases. Beside him his dad casually handed him snacks and smiled.

I glanced to my side and saw my own son in his noise cancelling head phones looking around the room. I was thankful that he was quietly taking it all in. But, in that moment I gave myself permission to let him experience this day in whatever way he wanted and needed to experience it. This was his day. His world. And, because he so tolerantly lives in our world every day; a world with rules and regime and too many expectations, today would be just for him.

During the show my son sat. He stood. He jumped up and down. He wiggled his way up and down our row. He said loudly “Ok, I’ll see you tomorrow” to anyone who would listen. He had his noise cancelling headphones on. He had his noise cancelling headphones off. He was on my lap, on the floor and everywhere in between. He told us when he needed a break and we went to the calming room for some quiet. He watched in awe at the visual stimulations in the theater. He asked to “please have some cereal” when the Blue Men ate their captain crunch. He sat amongst all of the other people waving their hands and shouting loudly; and in that moment everything about my son and his behaviors was completely normal.

You may not understand that comment. You may want to judge me for using that word. And, I get it. I get all of the reasons why I should not compare my son to this perfect idea of normal. But, it is not my child that I am comparing. My son is wonderful and intelligent and creative and funny and so completely 100% who he is. He is constantly moving the bar up and down and side to side and all around. He is our normal and wonderful Grayson. But his life, our life, is not normal.

It is not normal to stay home because you live in fear of the things you cannot control in the real world. It is not normal to put your child into twenty-five hours of therapy at age two. It is not normal to live in a world filled with treatment goals and progress reports. Nothing about our autism journey is normal. It is scary and filled with uncertainty. It forces us to be stronger than we know how to be. It forces our son to be more adaptable and tolerant than he knows how to be. So each day my normal family works hard to live a life that is not normal.

But yesterday, for just a simple moment in time, I felt normal. I gave my anxiety and fear the night off. I did not feel compelled to ask Grayson to keep his voice down. I did not have to help restrain his wiggly movements. I did not do anything to control or manage the situation. I just sat in a theater with my wonderfully wiggly son and watched the twinkle in his eye.

JS

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