"Autism Awareness" and "Autism Acceptance" are catchy phrases with a play on both words beginning with the letter "A" ... And it truly is a beautiful thing when people are familiar with the word autism and demonstrate compassion when they learn that our son's diagnosis.
But as an Autism Mommy, my wish is for "Autism Understanding". What do I mean? I find that even as Bryce's parent, it's a struggle to understand his thoughts. He receives and processes information in a different way than I do. Four years into this journey, I have done my due diligence and have learned A L O T about autism - and yet some days, it feels like I am back to square one trying to decipher the newest behavior that popped into our home.
Awhile back, I changed my prayer from "changing" Bryce to "understanding" Bryce. I began to pray for God to give me more wisdom and insight to understand what he is trying to communicate to me through his limited vocabulary and his actions/behaviors. I can see God answering my prayers when I am able to "crack the code" and help my boy when he is struggling to communicate with us.
There are times that my husband, Chris, and I have to be detectives. We step back, identify the clues, and solve the case together to get Bryce back on track. Let there be no doubt, it is complicated - yet is also very rewarding. We are frequently reminded that God chose US to be his parents, so we know that He will give us all the answers needed in His perfect timing.
Having said that ... Life can roll fine when we are flowing in our usual routine at familiar places with people who know Bryce and make him feel comfortable. The need for "more understanding" comes into play when we step outside of that comfort zone into the Land of Unpredictable.
Case and Point: Bryce wanted to go to our local train museum earlier this week. He woke up talking about it and was super excited. Bryce was up on the step-stool flapping with excitement as he watched the steam engine round the corner. I was hovering over him to keep him safe from falling.
All was good ... until less than ten minutes into our visit, an older volunteer approached me and asked my son's name. He proceeded to say in a deep booming voice "Bryce! Bryce! Look at me! Do NOT touch those buttons. Keep your hands to your side."
It was unexpected for me, so you KNOW it was unexpected for Bryce! And the poor kid wasn't even touching the buttons! What buttons was he talking about?! And then I saw that Bryce was near the control box with control switches on it. This guy was just trying to prevent it from happening but had no idea that he just shut my son down.
I saw it.
And my heart broke.
Our son doesn't act out when upset. He shuts down. I saw him processing what was just said after he was "forced" to look someone in the eye and receive what he perceived to be "yelling". After a moment, he stepped down and headed for the exit door. I knew I had to do something to make this better ... and fast ... If we left on that note, Bryce would not want to return to the train museum again, a place he genuinely loves and enjoys! It could have possibly affected his desire to go to ANY train museum, because he would associate that experience with all locations.
Outside, I gently asked him how he was feeling - Discussing emotions is new for us and has been extremely effective when Bryce can recognize and express them correctly. He said he was sad which confirmed my concern. I began reassuring him that he had done nothing wrong and that the man was just telling him the rules. He wasn't yelling at him.
He was just talking too loud.
My explanations were not working - Bryce was wanting to leave and asking for my car. Thinking quick on my feet, I called another volunteer over and explained that my son was extra sensitive with his autism. I asked him to assure Bryce that he did nothing wrong. This guy was immediately responsive and compassionate. Within a few minutes, he was able to convince Bryce to take his hand and go back inside for a tour. It was still delicate situation requiring extreme caution with words and actions until Bryce felt safe again...
But then it happened. I saw my little boy's eyes light up again!
His body full of excitement jump up and down again!
His contagious smile melt my heart again!
And he is already asking to return again next Tuesday!
As I processed what happened that night, I was wishing that the first man was clued in to Bryce's situation. But honestly, he had NO idea. Even after he saw us leave and return, he was clueless that he had upset Bryce. He wasn't being mean. He was simply talking to Bryce as he would talk to any other six year old boy who was standing close to a control box and might be tempted to mess with the switches.
What he couldn't see was that Bryce is different. Like it or not, he is different.
He thinks in a different way.
He responds in a different way.
He enjoys the trains in a different way.
He comprehends in a different way.
He expresses in a different way.
And while it may be obvious to me, it is not always visible to strangers. They misunderstand his flapping .. Or they think he's ignoring them when he is actually processing every word being said while taking in every single detail of his new environment. We couldn't leave the train museum without finding the air conditioner intake. Those kind of details.
When I shared our train museum adventure with Chris, his heart immediately broke for Bryce, too. He wondered out loud if Bryce's autism shirt would have helped - but we agreed that even if Bryce had been wearing his "Patience Please" shirt with a huge puzzle piece on it, the guy would not have noticed. He only saw a little boy near a control box.
And no, I did not say anything to Volunteer #1. He did nothing wrong. He apparently just speaks loudly, slowly, and firmly to children. Part of my parenting responsibilities is to help Bryce overcome these obstacles when they occur, get him back onto the step-stool, and end the experience on a positive note.
But I can still wish for more "Autism Understanding" ...