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Hello, stranger.

Let’s lighten things up a little bit, shall we? We’re going to play a little game that all parents love to play called “cute stuff my kids said this week.” S’go!

Me: K, did you poop on the carpet in here?
K: …….I’m upset.
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Me: K, brother loves you!
K: Yes.
Me: Do you love your brother?
K: Yes…….PSYCHE!
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K: Mom, I fart. I farted myself.
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And there you have it, folks. This entry has been interesting to a whopping three of you, including myself, my mom and my grandma. Here’s an adorable picture to make up for the awkwardness of easing back into regular posting. You’re welcome!

image

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.

It gets better.

I.
I manage to strong arm my way into an early evaluation appointment that ends up not being an evaluation appointment, but rather another appointment to confirm the need for an evaluation appointment. I can’t help feeling like I’m having a trick played on me. I keep waiting for someone to admit that they’re just kidding. The psychologist reminds me of my ex sister in law. Both boys cry their way through the evaluation before the evaluation and on into the waiting room. The receptionist covers his ears. The psychologist confirms the need for an evaluation.

II.
We go the van to calm down and then come back in to use the restroom. I have to force K into a stall with me and pee while he screams and pounds on the stall door, terrified that I’ll flush the toilet before I let him out so he can run to a safe distance. I manage this with his little brother in my arms. We finally open the door and another mom greets me at the sink. “I have one of those too. It gets better.” I try to smile but it chokes me on its way to my face. We rush back out to the van and hurry home to beat traffic.

III.
I make a stop at the grocery store before picking their sister up from the sitter. K asks to use his cane, but he chickens out in the produce section. The sounds of the coolers are a lot for him to handle. We move to a quieter area and he works up the nerve to try again. Strangers stare at him, wearing sunglasses indoors and pushing around his cane. Some asks questions, some smile, others avoid us. We leave without another breakdown. Victory.

IV.
The sitter invites us in. She has a lot of questions. She offers to help us out more often. I’m not good at accepting help, I say. Drowning feels like a better option than admitting that I’m tired. We bring out legos for K to play with. He screams and we decide to go home. I politely avoid more offers of help. I remember that my husband and I haven’t been alone together in over three years.

V.
We gather together for another dinner that K won’t look at. He stares at the ceiling light instead. I mix him yet another cup of formula. I watch my husband across the table, handsome and speckled worried gray. Our dining table seems a mile long.

VI.
We are finally able to wrestle all three children into bed and now there are dishes to wash and the day to put away. Once we finally have a chance to collapse on the couch, I pass out before I’m able to make good on my half-hearted promises of intimacy. He massages my tired feet and I know that his need for physical contact aches like my tired body. He never says so, but rather tucks me into bed and snuggles in close behind me. We breathe together for 45 minutes until K’s first night waking. I spend most of the night in his room after a few rounds of musical beds. My husband texts me good morning from our room down the hall.

VII.
I decide to accept the help.

VIII.
“I have one of those too. It gets better.”

What time is it?

This week K’s comfort question seems to be “what time is it?” He asks it while getting his diaper changed. He asks it when he wants his brother to leave him alone. He asks it when he wants juice. He asks it when he breathes air. The easier thing to do would be to list the times when he’s not asking for the time, which is never. He is never not asking what time it is.

At first I answered him. I would check the clock and give him an accurate reporting of the time. Now I just flat out make shit up or I tell him that I don’t know. Sometimes he’s okay with that, sometimes he’s not.

I try not to think about whether or not this could be an autism thing. I try to remember that he’s already in services so in the grand scheme of things, a diagnosis doesn’t really matter. But when is parenting ever really about the grand scheme? When do you ever stop in the middle of a day spent picking chewed up chex out of your hair and say “man, I’m so proud of my son for self regulating his sensory issues tied to eating and managing to rub his food in my hair instead of gagging and choking.” Never. Never will that ever happen.

Instead you will spend the day obsessing over which behaviors could be spectrum behaviors, when on earth his damn ADOS will finally get scheduled and why you keep getting faint whiffs of barf every few minutes. At least eventually you’ll discover the giant streak of dried spit up running down your back. The rest is not as easy to sniff out.

Aye, Chihuahua

When your child has echolalia, one of two things happens. Either a) you inadvertently say a curse word that he then fixates on everyday for what seems to be the rest of your God forsaken life or b) he fixates on some other less insidious phrase until it becomes so grating that him cursing loudly in public would be preferable.

While this phrase may seem at first to be harmless and maybe even a little bit adorable, it has its limits. And that limit will come at 4:45 am when a pair of sweet, plump little toddler lips brings your pre-dawn peace crashing down around you by whispering sweetly in your ear, “aye, chihuahua.”

This will only be the beginning.

Time for lunch.
“Aye, chihuahua.”
Let’s clean up your toys.
“Aye, chihuahua.”
Where’s your cup?
“Aye, chihuahua.”

This goes on for months. Strangers, friends and family members will think it’s cute and play his game repeating “aye chihuahua” back to him until they inevitably tire and move on. Doctors and therapists will become concerned. His occupational therapist theorizes that perhaps this is his “power word.”

Tell me, friends, what’s your two year old’s power word?

Friends and family will make suggestions like time outs, ignoring and punishment. Some days pass that give you hope, while other days make you feel like you’ll be hearing him utter “aye chihuahua” on his graduation day.

In the end, it’s not really about the phrase itself. This particular two word utterance isn’t the worst thing he could have chosen. It’s about the anxiety that accompanies the echolalia in general. Ever since this poor child was born, everyone’s been impatiently urging him to develop speech so that we can determine what his vision is like, why he’s not eating, why he covers his ears, why he cries, what we can do to make his world a more comfortable place and on and on. When you’ve got so many big, heavy questions you want answered, “aye chihuahua” is a tough response to live with.

And so we wait, and continue to savor him. Not everyday is perfect but we are present and doing the work. I know that he’s in there, taking us all in as well. My anxieties about him and his future continue to keep me awake at night but I can live with that. Until the day comes when he can tell me more, I’ll learn to love “aye, chihuahua.”