Last week as I wrapped presents and watched the 1951 version of Charles Dickens’, A Christmas Carol, I couldn’t help but think about our past, present, and future.
The Ghost of Christmas Past would have shown me something much different from we experienced this year. That vision would have been one filled with stress, panic, tears, frustration, sadness, and maybe a glimmer of hope. My heart started thumping just thinking about this portion of our lives.
Forcing Tucker to be still while unwrapping presents, forcing him into itchy Christmas program costumes, forcing him to be patient, forcing him to sit through long family dinners, forcing him to try foods that I knew he wouldn’t eat, forcing him to ‘be good’ when he was lacking sleep.
Forcing him to do all of these things…because that is what ‘good, well-mannered, and behaved children do.’
I had memories of taking in the stares, whispers, and much unneeded advice from well-meaning friends and family members.
I couldn’t help but to think about how glad I was to leave the past in the past. I couldn’t help but to think of the ‘getting better’ part. The Ghost of Christmas Present would show me that he had only one noticeable meltdown in public and less than a handful at home. It feels better.
But then I started thinking about reality.
He’s not getting better. How do I know? It’s impossible to ‘get better’ from autism. It’s not a cold or the flu. It’s not strep throat or bronchitis. It is a neurological thing…a thing that doesn’t change, go away, or get better.
So…that leads me to two thoughts.
We’re actually getting better. We’re becoming more aware of how to be a ‘better’ family to and for Tucker. This is good; really, really, really good. We understand his need for routine, his need to know, his need for peace, his need for sleep, his need to be alone, and his need to be included.
We’re all better at reading the signs – we’re all better and not making him sit at the table while we talk or making him sit and wait through two hours of present opening. We’re better at letting him go and do his thing and letting him know when it’s his turn.
We’re better at listening to him and his knowledge about Vikings football and him scripting something funny that was said earlier in the day. We’re better at listening to the same story again and sharing those nuanced parts of life.
We’re better. We’re better because we’ve learned from the past.
He’s getting better because we’ve conditioned him to live in our neurotypical world. According to our social norms, he is ‘better.’ But at what cost? At a cost of constant redirect. At a cost of constant correct. At a cost of him constantly feeling not good enough.
Truly, the best parts of him are the parts and pieces that haven’t been conditioned to live in this neurotypical world.
Him…looking at his eyes as they sparkled from a Christmas Eve candle and watching tears form as he saw mine fall from my cheeks.
Him…hugging me in the middle of the kitchen because our Christmas is just so ‘beautiful.’
Him…leaning in the window of our vehicle to give me a kiss before he went off with a friend.
Him…nodding and smiling at me from the middle of his basketball huddle.
Him…asking me what was wrong because my voice sounded funny.
Him…turning around as he walked into school to wink at me and touch his heart.
This was in the past month and it was all him. It was him…not following social norms over the holiday. It was a 13-year-old young man…sharing his tears, showing his feelings, kissing his mama, and showing empathy – and not in a house behind closed doors, in fact, quite the opposite.
In the open. In a parking lot. In a gymnasium. In front of a school. In front of a congregation. Showing and sharing with others who he is…without regard for how we are ‘supposed’ to be and act.
Simply the truth.
The present is pretty awesome…but I couldn’t help but think of The Ghost of Christmas Future.
What if ‘getting better’ came at the cost of losing his true self? What have we done in trying to help him assimilate?
What will the Ghost of Christmas Future show us?
A Tucker that is happy with his life.
A Tucker that continuously feels inferior because we’ve conditioned him to the point of losing his true self.
As parents, we all take chances. We all mess up and we all succeed – but there is one thing I know. After thinking about these three ghosts…I’m done. Tucker is who he is. His own spirit. He is the best version of himself when he exhibits his own wonderful, unconditional, unconventional ways.
All Tucker…all the time.
I hope the Ghost of Christmas Future agrees.