If life had a “rewind” button, I would have used it today.
The day started out as an exercise in logistics. Gerry woke up with ear pain, which I knew was serious considering his class was going bowling this morning. Somehow I needed to get him to the doctor after driving Howie to school and before Lewis’ speech therapy appointment at the house. Already late for preschool, I was on the phone with the doctor’s office while simultaneously trying to get out the door with three non-compliant boys. And my car keys? Nowhere to be found.
Yes, for the second time in 48 hours, I had misplaced them. Completely.
I found my spare keys by some miracle and pushed the kids out the door. We had to be on time. Howie’s class was going up to kindergarten for the last visit, and he was taking the big yellow bus. Since he won’t be taking it in the fall, we didn’t want to miss this.
I quickly dropped Howie off and flew to the doctor’s office. An hour later, we were out the door with “it’s just a virus” and made our way back home with 30 minutes to spare before Lewis’ speech therapist arrived. Just enough time for a snack and a very quick house cleaning. By that I mean I picked up all the Hot Wheels track in the living room so they had a place to sit. I do not mean that I cleaned up anything else.
About 30 minutes in to the speech session, the phone rings. It’s preschool. My heart jumps into my throat.
It’s Howie’s teacher. They’re just back from their kindergarten visit and she wanted to fill me in. For this visit, they purposely went when the cafeteria would be busy…and smelly. They wanted Howie (and the other kids) to experience this first hand to see how they would react.
Apparently Howie reacted by stopping in his tracks halfway down the hall, and covered his nose. For the whole hour. The smell of bacon and french toast cooking hit him hard.
This wouldn’t be such a big deal if, of course, his new kindergarten classroom wasn’t directly across from the cafeteria. This smell aversion will be a daily occurrence once school starts in the fall.
On the phone, we immediately brainstormed some plans of action. Social stories about smells. A “smell desensitization” program starting this summer at home, with us cooking different foods. Buying stock in Yankee Candle.
I hung up the phone and my wheels were spinning. Just like any autism parent, my brain immediately went into fix it mode. I sent out e-mails asking for advice from my fellow autism moms. I was on it 100%.
Then, from the other room…
“Alysia, do you have a minute for a question?”
It’s Lewis’ speech/language pathologist. Who I adore. And this sounded bad.
“How do I ask you this without stressing you out?”
“How long do you think it would take you to get a full developmental evaluation set up for Lewis?”
What? You mean like the one I canceled back in March because I thought everything was fine? Say that again?
“I’m seeing things that worry me. More, I’m NOT seeing things. Have you noticed that when he plays he gets fixated on one thing? I kept trying to move on from the fruit but he won’t change gears. And he’s only imitating me with play, he’s not initiating the play.”
I don’t know. I was so focused on the fact that he was “pretend playing” at all that I never noticed HOW he was playing.
“Does he make eye contact with you when he asks you for things?”
The better question is, do I make eye contact with HIM? I don’t know. I usually have one eye on his brother making sure no one is getting into trouble…
“I just thought it was best to talk about it now, and not 5 months from now, in case it takes you a while to get an appointment. He’s a big imitator. I’m not sure how you run your house in order to help your other son…”
You can stop right there. I don’t run my house at all. Clearly. And yes, I have no idea what’s going on either. Is he imitating his brother or is this his behavior? He’s the polar opposite of Howie. Receptive language is right on target, expressive language is behind. Howie was the reverse. With both, behavior is a struggle.
And no, I have lost all concept of what is “normal” anymore.
I e-mail my friends with this update. One friend writes me back “Deep breaths. And chocolate.” I reply that I’ve already inhaled an entire box of cookies.
I make two quick calls to “reschedule” the appointment that we canceled back in March. But no time for tears or wallowing, because I had to pick up Howie for an appointment with a pediatric urologist. An hour away.
I run out to the car. Tim has thankfully come home to be with the two other boys. Turn the car on, warning bells ring. I have a brake light out.
I call to Tim: “My left brake light is out. Will that be okay?”
His response: “It’s going to have to be.”
We were, of course, late for the appointment, partly due to traffic and partly Howie became fixated on the revolving doors at the hospital. In the waiting room, the questions became repetitive. “Why am I here?” “Remember when it hurt when you peed a while ago?” “But I’m better now. Why am I here?”
The doctor’s exam was quick and he was quite good with Howie. He turned to me and we began to chat about how to keep this from happening.
“With kids like him, this could be a recurring problem.”
Kids like him?? What does he mean?
I turned and looked over at my son. Spinning, pacing, rocking back and forth on his legs. Flicking his fingers. Babbling nonsense words.
Oh. Kids like him. Kids with autism.
I wanted to cry.
I thanked him for his help and told him we’d be in touch for our next steps. The ride home was an exercise in perseveration – there was a bridge at the doctor’s office near the parking garage. He wanted to run on it. I had no idea until we were already on the highway. Forty minutes of “Turn this car around!” and “I’m going to ruin your life!” and “Mom, you’re so ANNOYING!”
(chances are, this won’t be the last time I hear that.)
The next several hours were completely unsettled. I lost track of how many times time outs I issued.
I’ve been spending the rest of this night eating my mint chocolate brownie (graciously delivered by my amazing friend) and thinking over the day. Everything just seemed to pile on. But I kept going back to what Tim said about my brake lights when I asked if it was going to be okay.
“It’s going to have to be.”
And that’s what I have to remember. That no matter what comes our way, we’ll figure out how to make it okay. Whatever steps we need to take to make things right, we’ll do it.
It was just one bad day, right? Just one bad day.
“Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong
Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile and you go for a ride
You had a bad day
You’ve seen what you like
And how does it feel for one more time
You had a bad day
You had a bad day” – Bad Day by Daniel Powter