Rationalizing

It’s interesting how we rationalize things in our life. Like its sad the Packers had a bad year but at least I don’t root for the Vikings, so there’s that.

Lets take another example. I’m sure you’ve decided to set an alarm for say 6 am, only to hit snooze thinking “Ah heck I don’t need to shower.” Then hit it again at 6:10, “Who needs breakfast?” One more time at 6:20 essentially saying “I don’t give a bleep what I look like and I’m ordering in food for lunch. Go ahead judge me.”

Well, Nolan’s autism journey has been kind of like this for me. At 2, he had a speech delay. He ignored his baby sister, lined things up, and enjoyed playing alone. I thought to myself, I can deal with all this as long as he doesn’t have anything serious going on. Boom! Autism diagnosis January 2017. Okay, I can deal with this. This physician doesn’t know my child, it’s not as bad as she thinks. Heck, we will get speech help, in-home autism therapy, and work on finding what he likes. Boom! His speech became 1-word sentences. Pair that with random stripping of clothes, difficulty potty training, and constant stimming, drumming, and jumping and my head was spinning. Okay, I can deal with this as long as I can communicate with him what he wants, needs, and feels. Boom, functionally nonverbal.

It’s okay at least I…. wait…Where do I rationalize from here? I refuse to accept that I can’t communicate with him. We are trying the iPad speech software and keeping up with speech therapy with a private therapist and therapy in school, but he essentially cannot tell us anything. I don’t know how he feels, if he is cold, has to pee, misses his grandma, wants to tell me the Bears suck, is hungry, or wants to go to sky zone. Nothing. At times he can echo simple words like goodbye, please, or treat but he can’t say love you, and that hurts. My boy will be five in 5 months and cannot talk.  He will pull you in the direction of what he needs and then its like playing “Go Fish” to figure out what he needs.

We try, and will keep trying. I don’t let him see my anger about it. Siraya and I try to hide frustration when we can’t figure it out and I won’t let him see me sad. I don’t want him to ever feel at fault. But when he’s asleep, or when I’m driving alone, or I see you interacting with your child, you’re damn right I’m thinking about it. Is it so much to ask to know your kid? I refuse to rationalize regarding communication, so we continue to fight.

I feel like the worst part is whats happening now, though. The part where he realizes how different he is. Deep down, I know his recent increase in screaming, frustration, and mood swings is because of this. He sees (and hears) his younger sister communicating, and she sure does talk A LOT! I often tell myself, I will not complain about her talking too much. I will not complain about her talking too much. I will not complain about her talking much. 

So, where do we go from here? As of now, our goal is still for him to be verbal. We don’t want to give up on his voice. But, we also need to do better as using his speech software. At some point we also have to think about whether Nolan will ever be able to care for himself. We won’t always be here for him. He has to learn to communicate at least basic needs so that’s what we work on every day. Every meal. Sometimes every bite. There’s been weeks where we go through 2 packs of Oreos, 2 bags of licorice, and a 6 pack of root beer because those are his favorite buttons on his speech iPad. He gets it (almost) every time for reinforcement. I really thought his dentist was gonna 💩 a 🐓when we were there earlier this year, but she said his teeth were phenomenal, how the heck does that happen? We have worked very hard on him being able to dress and undress himself, eat with utensils, answer to his name being called, hold hands in parking lots, and follow routines, all things that come very hard to him.

Being Nolan’s dad has taught me to balance the challenges life brings you with the joys that come from persevering through those challenges. It has taught me our differences give us a way to educate others. It has taught me that maybe I shouldn’t rationalize anymore. Skills Nolan has now, he might not have in 6 months. That’s a tough pill to swallow. #pharmacytalk

But, you know what? In 6 months, he’ll have new skills. And, he’ll always have my wife and I, and our support system. We’ll be here to teach him however we can. And he’ll keep teaching us. We’re still looking forward. Nolan is worth it.

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