Thursday night was beautiful. I had high hopes that the evening would go smoothly. Ethan was performing at his Spring Musical Concert at school, and after having listened to him practice numerous tunes on his recorder, the much anticipated night had arrived.
I helped my eldest get gussied up in a blue button down Oxford and a blue striped "power" tie. He looked handsome and confident. Isaac squirmed on the bed next to us as I helped Ethan with the button closest to his neck: "Mommy, Mommy, Moooooommmmmy!" Isaac was yelling my name for no apparent reason. "Isaac, I'm right here...." I quietly hushed him. He continued to flail his legs and talk with no volume less than extreme. After helping Ethan, I pulled Isaac aside, sat him on my knee, and tried to look him in the eyes. The eye contact was slim to none.
"Isaac, I don't know know why you are screaming at me, or why you are kicking. Can you tell me how to help you?"
Sometimes I have to ask Isaac why he's doing what he's doing to help him figure out what he needs. It could be he's just overly stimulated, excited, or, even has to use the bathroom. Usually a conversation helps, but in this case, he wiggled off of my lap, and ran away flapping his hands. Sigh.
As we load into the van, the loudness and fidgeting continues. I start worrying. Will Isaac be still during the concert? Will he shout out and make a scene?
When there are crowds, there are glances. Where there are glances, there are stigmas. Where there are stigmas, there are assumptions. I hate assumptions.
My mom and Gram met us at Ethan's school, and already saved us seats close to the front. More worrying...It's impossible to describe in words how my mind creates a series of "what if" scenarios...
As the music and singing began, Isaac became more and more active. He couldn't sit still, he couldn't control his volume, and even at one point, his bodily functions (I suppose it's normal for a 6 year old to pass gas while sitting on his Mimi's lap during a quiet lull between orchestral performances....) I decided to take him to the bathroom, and ended up staying in the back of the auditorium til the end of the show. He jumped up and down, shook his head, and generally was not able to focus at all.
My mom and Gram took Isaac outside while I rounded up a jovial Ethan. He had mentioned to his friends and their parents that we were going for ice cream. After a few more families decided to meet us at a local ice cream shop, they boys excitedly ran to the van. I chatted with a few familiar faces, and ran into Ethan's wonderful teacher. I stopped her to give her a hug and thank you, and, just like that, I couldn't control my emotions. Tears welled in my eyes and I apologized for the episode. I blamed it on my husband being away on business (which was a large part of it) but really, it was because I had been trying to put on a good face, trying to not let people see how hard it had been at home all week, that night, watching Isaac have a hard few days and me not knowing how to help or put a finger on a specific trigger.
The straw on the camel's back was getting ice cream. Isaac tried to join the bigger kids and sit on a fence and eat their treats. He lost his balance, stumbled off and splat! His ice cream cone hit the pavement. The other kids (including his big brother) began to laugh as Isaac picked up his cone, and took a lick. I watched with furrowed brows and held breath as Isaac absorbed the kids laughing, didn't know how to process their response (which was, just like children, meant in fun), and in frustration, threw his ice cream--barely missing a stranger who was sitting nearby. He began to cry. For the first time that I could remember, Isaac was crying NOT because of a physical injury, which, even then takes a very serious wound to bring tears. He was crying because he was hurt deeply, emotionally. For a boy who struggles identifying emotion in general, this was a beautiful, terrifying moment as I watched.
I wanted to run over, yell at the kids to stop, scoop up my son and cry with him. I wanted to throw my own ice cream that was melting in my hot, angry hands. I wanted to shake Isaac until all the autism fell out of him in a messy heap on the sticky ground, and hug him until everyone disappeared.
Tables of people who had watched Isaac throw his ice cream, and earlier, run and scream with no context in their minds, began whispering to one another as I stood close by. I wanted to turn to them and explain, reason with them and pull out a pie chart showing how rarely this really happens, but how horrible it can be. I wanted them to see Isaac for who he was...
After holding Isaac for awhile, I talked with him. "Are you sad because you dropped your ice cream?" "Yes..." he sobbed quietly. "But, mom...they, they, they...l-l-laughed at me." My heart broke. Lifting my head so he wouldn't see me crying either, I smile and say, "I know. I saw them. They thought you were funny." "B-b-but I wasn't funny" he said. I bypass the talk about throwing the ice cream out of frustration. I decide to encourage him. "I'm glad you could be sad and tell me why. Thank you for doing that." I gave him a long hug and bought him another ice cream.
Seeing the world and experiencing it through Isaac's eyes is part of my existence. His autism is part of me because he is a part of me. We battle together, we interpret together, we learn together. We also will fail together, cry together, get frustrated together. But, it will be together.
A new ice cream: a second chance to learn, and more grace for the moment.