Smiley Riley

Part 1

When Riley was a little over a year, I noticed that it was hard to get his attention. When I was right in front of him, he'd smile at me with a gummy grin, living up to his nickname Smiley Riley, but when I called his name, sometimes, even multiple times, he didn't turn towards the sound of my voice. It seemed minor since he eventually would respond, his bright blue eyes seeking out mine & any worry I had would melt away.

By his 18 month appointment, I felt myself growing anxious as we entered the waiting room. See, the week before every well-check appointment my kids have, I find myself compulsively googling what milestones they are supposed to be hitting as if I can magically manifest or research my way into developmental progress. Note to Kayt: this is not college & you can´t cram to ace a test at a pediatrician's office. 

Most of the time, Ruby was on track or ahead of all milestones, but Riley, on the other hand, was behind on most. In fact, I had a Smiley Riley document on my phone where I had listed every question, concern or behavior prior to the appointment so by the time the nurse presented me with the MCHAT screener to complete, I felt a heaviness settle onto me.

Promising to tell the whole truth and nothing but the truth so help me Gawd, I put pen to obnoxiously neon orange paper & answered each of the 20 questions, yes or no, even though I desperately wanted to elaborate on every one. 

• Does your child take an interest in other children? Yes or No.

No, but he loves his sister when she is being goofy & making silly noises. Sometimes, she crawls into his crib and they spend 15 minutes cuddled under the blanket giggling at shadows on the ceiling or her Olaf impression during the Frozen songs she sings.

• Does your child ever use his index finger to point, to indicate interest in something? Yes or No.

No, but he thinks it is hilarious to use his index finger to press the freckle on my chin as a button so I shower kisses on his face. He is also the BEST cuddle buddy on the planet.

• Does your child sometimes stare at nothing or wander with no purpose? Yes or No.

Yes, but maybe what I see as nothing, he sees as an adventure. I think the rug in our living room is pretty boring, but he is enthralled with the way it feels on his bare toes & laughs when he finds a Cheerio hidden in its depths.

I, however, managed to keep myself resigned to answering Yes or No & presented the completed screener to his pediatrician when he entered the room. He asked a few clarifying questions and decided to put in a referral for Riley to be evaluated for autism. It was a 6-12 month wait list for an appointment & he reasoned that it was better to have the appointment referral process started, in case we needed it and his delays didn’t improve in the next six months. He squeezed my shoulder & said, ¨Let's get him in line, mom. We´ll see if we need to actually go on this particular ride, but for now, we are just showing up and getting him in line.¨

Looking back now, I almost imagine it like lining up on a sticky summer day at Adventureland to get on a roller coaster - could be amazing, could be terrifying, could be both. But to find out, you gotta get in line & start moving your way towards the front.

In October, we got to the front of the line & I found myself in another waiting room with a pit in my stomach and a squirmy toddler in my arms. We spent 2.5 hours playing in a big open room with tons of toys as two behavioral pediatricians asked me a billion more ´Yes, No & Tell Me More’ questions. So, I told them more. I told them - yes, but he also does this. No, but I also worry about that. While I talked to one doctor, Riley would play with the other, bursting into a belly laugh every time they threw a ball into the air or made a truck crash into the wall.

It was a comfortable rhythm. A chug uphill. A place where Riley was seen & I felt heard enough to not realize how much time had passed. We came to the end of the evaluation and I was pressing an affectionate kiss into Riley´s curls when the doctor made intentional eye contact with Riley, praising him holding her gaze & then next to me. I felt seen. Seen & scared shitless of what was coming next.

¨I am going to make an official diagnosis...¨

& the roller coaster went down the first hill.

1. Autism Spectrum Disorder.

2. Global Development Delay.

3. Expressed & Receptive Language Delay.

& on and on.

We can talk about the rest another day, but for now, just know, my family is on a roller coaster ride. I am not sure that we will ever get off.

It has been one month since his diagnosis & it has already been a hell of a ride.

Love, Lolly.