Monthly Archives: March 2015

We wait.

As is our way, we were running a few minutes late. The receptionist is kind and assures me that anything under 20 minutes late is kosher. I check us in and settle in on a mini couch next to the fish tank.

Waiting rooms feel like home. We’ve spent cumulative months of time together in them, I’m sure of it. We’ve turned waiting into an art. A pox on doctor’s offices that don’t provide waiting room wifi. After a few minutes, they finally call us back.

My husband and I have spent more than our fair share of time in these rooms waiting on a professional to deliver some kind of news. We waited to be told that we were expecting a precious daughter. We waited to be told that the limp I had developed over the period of a few months was actually a massive bone tumor. We waited to find out if my bone tumor was cancer. We waited over and over again to be told that my tumor was back, and then again that it had peppered my lungs with scads of baby tumors. We waited to be told that the son we were finally able to conceive after years of fighting said tumor was blind. We waited to hear that he had come through surgery alright. And now, this:

We waited to be told that our son has autism.

The muddy process that we had to wade through to finally receive this diagnosis took around eight months. During this time we’ve watched our son turn more and more inward. The change in him from when his pediatrician first started to suspect something to now has been significant. I’ve heard that this is common. It’s not unusual for there to be a shift around this age.

Uncertainty seems to be a theme. There are behaviors called “blindisms” that can look a lot like autistic behaviors. There were so many weekly meetings with therapists, teachers and specialists all tossing around guesses, opinions and hypotheses. This is a cruel kind of illness. I find myself longing for something like a broken bone. Injury, imaging, treatment; done. I can nurse my child through a broken bone and watch him come through ok on the other end. I can’t nurse him through autism.

We were sent home with a huge folder fat full of fliers and phone numbers. There’s a “Dear Parent” letter and it reminds me of a letter signifying the end of a relationship. Here’s the relationship you thought you would have with your child, and here’s your new reality.

Switching up our expectations when it comes to Kodo is nothing new, but visual impairment felt different. Aniridia takes away one of his senses, but autism seems to take away his spirit.

The newness of it all still stings me numb. We carry on with therapy appointments and Easter preparations. There are, mercifully, two other children to tend to. My children remind me to dutifully continue placing one foot in front of the other. There’s work to be done at this stage, and much of it is mine. I’ll enjoy being the one to do the work while I’m still able. Soon enough it will be Kodo’s turn.

All of this has happened before.

Kodo has stopped eating and sleeping again. It’s been going on for a couple weeks now but peaked lately. He wakes up, sits straight up in bed and screams until someone comes to rescue him and chase away whatever it is that makes him feel so scared. On the worst nights, we give up around three or four AM and just give in to brutal wakefulness.

During the day he asks constantly to be carried. He pops up onto his tippy toes and panics, his chin quivering. I have to remind him that he is only to be carried when we’re outside, not when we’re inside. I would prefer to scoop him up and whisper to him whatever magic words would make him feel safe. I should be able to make him feel safe.

It’s like he doesn’t breathe the same air that we do. Like our oxygen is missing some critical molecule that he needs to maintain homeostasis. Without it, he can survive but never feels completely sound and satisfied. He can’t relax. Something is missing. Disaster waits, panting like a starving dog.

He doesn’t eat, except for gluten free Jojo’s from Trader Joe’s. His sister steals about half the box and we are forced to leave the house for more. Going out helps me to stay sane, but it can be tough. Kodo’s anxiety kicks into overdrive when we’re outside of the house. There are sounds that he can’t use his vision to identify, so we are in constant verbal communication. I describe every little thing that I experience and observe, hoping that I’ll be able to help him to better understand the tidal wave of sensation that washes over him like an ocean of broken glass. Sometimes it seems to help, other times it seems to help less.

These days are nothing new, but they never become normal. The dance required to manage it all becomes more familiar, but never natural. And so we keep practicing the steps. Counting and repeating, counting and repeating. All of this has happened before, and will happen again.