Last week I was challenged to answer this question, “If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it?”
My first thoughts?
- “Expletive you (you as a personified version of autism).”
- “Expletive off.”
Let’s be honest, though. I’m not really the cursing kind. I don’t really care if others do – but it’s not my thing. So, then I thought about,
- I will not let you take my child.
- You will not win.
Let’s be honest, though. There are days when autism does win AND does take my child – although these days seem fewer and far between, they still exist and the memory is not too distant.
It seems obvious to use competition metaphors in March. I’ve always loved March Madness. Even if I don’t watch basketball the rest of the year – March is awesome. Stories like my beloved University of Northern Iowa Panthers (my Alma Mater and current workplace) are inspiring. The year was 2010. They were an underdog; a nine seed playing Kansas, a one seed. The score was 63 to 62, UNI had the lead with the ball and 37.1 seconds left.
What a player should do in that situation is run down the clock, attempt to draw foul, and make their free throws. Not Ali Farokhmanesh. He caught a pass, was outside of the 3-point line, and took the shot. The shot went in and made it a two-possession game, thereby all but sealing the win. (see highlights at https://www.youtube.com/watch?v=SzUFz-58PPA)
The shot defied all logic.
Tucker defies logic.
My husband, a sporty spice dude, came home soon after and was very excited about a fellow coach’s motivational speech. The coach had a tattoo that read, “WE.” Not we as in you and me. WE as in Win Everyday.
That is what I would tell autism, the divine madness that is our life.
I will Win Everyday.
No competition is won by an ‘I’ – even in individual sports (wrestling, track and field, golf) there are a team of people behind the competitor. Our team? Our ‘we‘? Teachers, cousins, coaches, friends, family…everyone.
We are underdogs in this battle, no doubt about it. But I know that We will Win Everyday
So, here is the official letter that I would write to autism, if autism was a person.
We will Win Everyday.
You cause him to be ultra-logical. That’s fine. We will find ways that he can teach us; we will find ways to teach him. We will Win Everyday.
You cause him to be bothered by loud, sudden, or high-pitched sounds. That’s fine. We will not raise our voices. We will Win Everyday.
You cause him to have difficulty making eye contact. That’s fine. We will be patient and remind him. We will find other ways to make sure he is listening. We will Win Everyday.
You cause him to lose his words. That’s fine. We will be patient and wait. We will wait until he finds the words. We will Win Everyday.
You cause him to not understand conversation rules. That’s fine. We will allow him to talk and then calmly remind him that it’s someone else’s turn. We will Win Everyday.
You cause him to cling to people he trusts. That’s fine. We will hold him, as tight as he needs. We will Win Everyday.
You cause him to be fearful of stairs and walking on uneven surfaces. That’s fine. We will hold his hand. We will reassure him that We will be beside him every steps of the way. We will Win Everyday.
You cause him to bump into things, knock things over, and appear clumsy. That’s fine. We have all kinds of band-aids and forgiveness for mistakes. We will Win Everyday.
You cause him to have poor fine motor skills. That’s fine. We have amazing occupational therapists. We will Win Everyday.
You cause him to have serious sensory issues when it comes to his clothes. That’s fine. We will turn his socks inside out and allow him to wear sweatpants wherever he goes. We will Win Everyday.
You may stand in the way of processing emotions. That’s fine. We will remain calm in the face of his reaction. We will Win Everyday.
We will Win Everyday. Period.
Then I will celebrate those wins. No matter how small – because our win means you didn’t.
We will Win Everyday in some way – so bring it on because we’re used to defying logic.
We are the underdog.
The year was 2010, Tucker was in 2nd grade. Ali Farokhmanesh made the shot. Later that year Tucker received this award.
He will never give up. We will never give up. We will Win Everyday.