Our autism

This post is inspired by the recent post from Four Plus an Angel.



This is our autism.

Waking everyday to an excited eight year old asking me, “Do you remember in the movie when they….?”

Reading the same book for bedtime for days and weeks and – lately – months.

Pretending to be interested in his latest obsession, while silently hoping it doesn’t last four years like the last one.

Taking two hours to calm him down after he was disappointed about something that was scheduled to happen but got cancelled.

Talking to him daily —  for the gazillionth time — about how the world doesn’t know about his schedules and expectations and how he has to expect not everything will work out as he has scheduled them to happen. Knowing this talk is pointless.

Allowing him time to straighten the play money and pieces and cards in the board game every two minutes. Knowing he will follow the board game rules exactly. Or, knowing he will institute new rules that benefit him if the original rules are making him lose, and we all must then follow these new rules that he just made up. Or else.

Taking a week to prepare him for a dentist visit, calling ahead to prep the hygienist (every six months), then preparing myself in case he again grabs the dental tools out of his mouth and screams his high pitched death scream.

Serving him the same three foods over and over and over, and giving up trying to get him to eat anything new.

Bribing him with a game or treat before a haircut. And giving the hair stylist a long list of what not to do (using electric clippers, expecting him to sit still, worrying about the hair being even, offering a lollipop if he’s good — he’s going to get one just for sitting in the chair).

Having his sister talk to him and soothe him while I cut his fingernails and toenails. And promising him I’m really not cutting his fingers or toes off even though he’s crying as though that is exactly what I am doing to him.

Asking his older siblings to be patient with him when he barges into their rooms without knocking, even though I had just told him to knock first, as I do each time he goes up to their rooms.

Putting him to bed at the same time each night because if he goes to bed later than normal he can’t fall asleep when the house is too dark and there are weird noises outside.

Describing fireworks to him as he cuddles with me in his bed with his noise-reducing earmuffs on. And promising him that the neighbors won’t be setting off fireworks every day or too late in the night. Then crossing my fingers that I’m right.

Allowing him to check my weather app only twice a day, instead of every 15 minutes, like he wants to do. Then listening to an hour long weather report which includes the pressure, humidity, wind speed and direction, temperature fluctuations, precipitation forecast with probability, the color of the rain expected (on our map red is BAD … pink is WORSE), and his prediction of whether or not a tornado might happen.

Spending time almost every day explaining that we won’t be having a tornado today, and what precautions we have in place in case there is a tornado warning. (He’s only lived through one warning in his life, yet worries about this happening every day since.)

Making sure the “bad weather bag” is always placed near the basement door, and that it has all the necessary items in it: book, stuffed animal, electronic game (fully charged), and noise-reducing earmuffs.

Explaining to his teachers that he must be at the front of the line when they go from one activity to the next, so that he doesn’t wander off like he did twice last year. And, yes, he says he’ll never do it again, but he may, because he has, even after saying he won’t.

Explaining to him the dangers of hiding in a storm drain, after he told me he thought it would be fun to do that.

Not laughing when he describes what people look like. Peach skin. Circle face.

Not crying when he still doesn’t know his classmates’ names, at the end-of-year party.

Taking two weeks to help him get over the sadness of the school year ending, then waiting a month and taking a few weeks to get him prepared for summer to end and to start of the next school year.

Knowing whatever I say will be deemed a rule or law or true, because what you say has meaning and is real and if I say I’ll be there in five minutes I can’t take six or twelve because that is wrong and not what I said.

Understanding that when he hits his fingers this way or that, or taps his elbows in a pattern — right, then left, then right and then left again — it’s not because he’s nervous or worried (though that may be true) but mostly because it calms him down and gives him a sense of peace and control.

Fake smiling without saying anything when friends and family say, “but he doesn’t look like he has autism.”

Cringing when friends and family — and doctors — say, “I’m so sorry” when they are told he has autism.

Thankful he is a most original, thoughtful, kind, funny, inquisitive, wonderful, smart, lucky boy. And knowing I will do everything I can to make sure he is happy and has all he needs to learn and grow, and to be safe.

Loving him and adoring every bit of him each day.

Knowing I wouldn’t change him even if I could.