In honor of the first Saturday of the Iowa State Fair.
Nope, it’s not about all of the items that come fried on a stick – pickles, apple pie, Snickers, and butter. Yes…even butter.
Heart attack on a stick.
My uncle had this thing about the word fair. When his children would complain about something not being fair he would reply, “The fair is in July.”
My dad still has this thing about the word fair. His response to complaint about fairness? Fair isn’t always equal, and equal isn’t always fair. The older I get the more I recognize and understand that phrase.
This blog is largely about how we handle the day-to-day. I happen to think it’s fairly unique because I write from the viewpoint of a researcher, mom, advocate, teacher, and all-around positive person. I write to educate, to promote understanding. I write about coping strategies and how we have ‘overcome’ some of the more difficult parts of the spectrum. I try to write with a positive attitude…
But this thing. This Autism thing. I’ll be honest – it isn’t fair. Not at all. Period. And yes, I’m about to go ‘there.’
It’s incredibly unfair.
Here come the tears all the way down to my fingertips. I hope my computer doesn’t short out before I finish….
I want him to feel what it’s like to be neurotypical for just one day. Just ONE. I want him to know what it feels like to just have the words come out. I want him to feel like he gets it. I want him to fit in. I want him to not battle.
It’s his life. Every day. While he’s made amazing strides – more than what most thought was possible – it’s still hard. I want him to have normal poop. I want him to be able to have a conversation with friends. I want him to look at the camera. I want him to understand. I want him to not be overwhelmed. I want kids to want to be his friend.
I want him not have to have a Special Education teacher. I want him to not have an IEP. I want him to not feel ‘set apart’ from his peers. I want him to get sarcasm and be able to write the stories he sees in his head.
I want him to not bang his head when he’s frustrated or cry when he’s overwhelmed. I want him to not have to cover his eyes when the world is just too much.
I want him to not struggle in the heat. I want him to be able fit in by wearing jeans. I want him not to say things like, “Hopefully one day a girl will understand me and want to be my wife. I’d be good to her”
I want all of this and so much more for him because he is mine. He is my own.
Then, the anger. I’m angry at God. Why him? I’m angry at myself for saying any of this – because I wouldn’t want Tucker any other way. But I would. I would want him to not to have to struggle. But I want him just the way he is.
This is why it isn’t fair. It isn’t fair – simply because these are these thoughts that run through my head, daily. It’s not fair for him…or me (30 second pity party here). I want to not think about it all. I want to not have to plan ahead or be constantly scanning surroundings for what could go wrong. I want to be able to relax and assume a call from school is a good call. I want to not have a constant internal battle with myself.
I know I didn’t cause this thing…but he came from my body.
Did I do this to my boy?
I love him so much, just the way he is. Yet, I want something different for him – but at the same time I don’t. Maybe just one day? Just one. One day to not have any of this on his plate. But then I know. I wouldn’t want him to have a day without it…because he would have to return to his spectrum life.
It just isn’t fair – maybe deep fried pickles, apple pie, Snickers, or butter could pull me out of this moment?