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?”
Um…too late.
“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
June 14, 2011 at 9:44 pm
you will figure it all out as needed, one step at a time. and we’ll be here at every turn.
hugs.
June 14, 2011 at 10:48 pm
thank you. I know you get it, and knowing that you’re here means the world.
June 14, 2011 at 10:15 pm
What a day, indeed. Sounds like something out of my life.
You’re absolutely right. No matter what, you’ll deal with it. You’ll find a way.
Hope the chocolates were good. I think I forsee a snack in my future.
June 14, 2011 at 10:48 pm
the chocolates helped. A lot. Thank you
June 14, 2011 at 10:32 pm
Yep, that was a BAD day. Possibly even a REALLY BAD day. And it was just one day. Some days do kind of crash into me, on top of me. Some days I feel flattened by the enormity of all of this. I hope you can crawl out from under this day, cookies will help! As will writing and sharing this with those you know you can turn to, lean on. It isn’t easy, it isn’t fair. You amaze me with your grace, you might disagree with me, but your generosity of spirit, your passion will pull you through this one. Now, back to my packet of triple choc biscuits….
June 14, 2011 at 10:49 pm
you are too kind. It’s friends like you that pull me out of this pit of a day. So glad you’re here.
June 14, 2011 at 11:01 pm
OH…..I am so sorry that you had such a bad day. We have had those days when my husband and I look at each other and just say, “it just s**ks”. Please know that we have had these days at our house. We have had a lot of these day at our house. When you share your story it help sme to know that I am not alone on my bad days. You will be okay. But I am so very sorry.
June 14, 2011 at 11:16 pm
Oh, holy crap, Alysia. That just sucks! I have had days like that. Thankfully, not today, but I never know when one is just around the corner. That is a LOT to take in, and of course the kids are always on worst behavior when things are already tense and crappy. Just because.
So sending you cyber-hugs and psychic chocolate. You WILL get through this, you know what to do. And? We are so here for you.
June 15, 2011 at 12:14 am
Alysia, I’ve so missed your posts.
I’ve had a few days like this the past couple of weeks too. Thank you for making us feel we aren’t the only ones feeling this way and for showing us that it’s OKAY to feel frustrated, it’s OKAY to feel overwhelmed and it’s OKAY to cry once in awhile. Most importantly, it’s OKAY to eat chocolate to feel better.
(I can’t eat chocolate…I’m allergic but I do enjoy the occasional double stuffed vanilla oreo. LOL!)
Peace and love, my friend. I promise to check in more often. xo
June 15, 2011 at 2:30 am
What a crappy day!
You sure had a lot to deal with all at once….I am also sending you hugs and comfort and anything else that you need.
You poor thing
We are all here for you.
Promise
June 15, 2011 at 7:46 am
Yes, yes, yes. You need to join me in a crapfest. Believe me, saying crappity crap in new and different ways helps. That and chocolate. And margaritas. Oh, and cheese dip. And a day off. AND NEW SHOES! Come over to the shoe side, mama.
June 15, 2011 at 7:46 am
Oh, yeah. That was me.
June 15, 2011 at 8:12 am
You should have earned a mommy merit badge for that one! Big hugs to you!!
June 15, 2011 at 8:24 am
I am standing up in front of my computer and taking my hat off to you – you amazing amazing amazing woman
HOw you get it all done – is just a miracle
Sending love and hugs
June 15, 2011 at 8:29 am
Oh, hugs for you Alysia! I am so sorry about your day!!!
My dad always says “this too shall pass” — and it does… but that doesn’t mean it doesn’t leave hurts and scars as it does. Sending hugs and strength for you… today will be brighter!
June 15, 2011 at 8:40 am
You know the problem with the rewind button? You’d have to live it again. I think mine is on fast forward right now, when I’d really like to hit pause for a few minutes. You know how much I know this, get this, live this. You also know that I’m here whenever you need me to be. Love and stormtrooper hugs.
June 15, 2011 at 8:48 am
Last night I toasted you & Tim. Hang in there.
June 15, 2011 at 9:02 am
I’m so sorry you had a rough day! You are right, tho, it’s just one bad day. We take the good and the bad and keep trucking. Lots of hugs and many prayers!
June 15, 2011 at 9:11 am
Oh girlfriend =( I know days like this and they are awful! Sending you a great big hug and good thoughts for a better day today. You are a wonderful mom and you are doing a fantastic job…. Seriously
Love
June 15, 2011 at 9:54 am
It’s days like this that Bob & I say “autism just kicked our ass”. So, we live for the times when we can say “we just kicked austism’s ass!”
June 15, 2011 at 11:07 am
Okay, we can chalk that up to one bad day. BUT, think back to the ride in the car with the windows down, music blaring and how the hair salon said he was the most behaved child they had seen. Live in that moment for a minute, that will help you recharge!
You are a great Mom and most importanly woman!
June 15, 2011 at 5:42 pm
I just read your blog for the first time today and was amazed to see that you were at a pediatric urologist. My 5 year old daughter, who has autism (I have 2 kids, both with autism), has been complaining for over 2 weeks about it hurting to pee. She has taken 2 samples to see if it is a UTI but both have come back negative. Now I have made an appt. for an ultrasound for her. Is this common in children with autism? I’m so glad I found your blog, even aside from this coincidence.
June 16, 2011 at 4:01 pm
Hi and welcome! I’m not sure if it’s common with kids with autism or not. Our issue is definitely about hygiene and about him taking care of himself. We always take it to the next step with specialists since I’m wary of my son’s ability to express his discomfort level appropriately. I hope your daughter’s issues clear up soon
June 15, 2011 at 5:49 pm
Gosh… one hell of a day for you Alysia. What can I say but more deep breaths and definitley more chocolate! At least you’re on track with the appointment… and all will be ok. Not beacause it’ll have to be but because it WILL be.Keep a good eye on that urology issue
Good luck..
((xx)) Jazzy
June 15, 2011 at 8:41 pm
i know your head must have been spinning and your heart taking a beating. so sorry, my friend. here for you day by day, the good and the not-so good. xo
June 15, 2011 at 10:17 pm
I just wanted to send you a big internet hug. We’re going through the same thing, basically, with our youngest, so I know how badly a day like today can suck. You inspire me to keep going. I think you’re pretty amazing.
June 16, 2011 at 3:35 am
sending you hugs!!! xo
July 29, 2011 at 2:57 pm
[...] It’s the appointment that I rescheduled after his early intervention speech pathologist suggested that he needed to be evaluated. He’ll be seen by a developmental pediatrician and a speech/language specialist. [...]
July 29, 2011 at 2:57 pm
[...] It’s the appointment that I rescheduled after his early intervention speech pathologist suggested that he needed to be evaluated. He’ll be seen by a developmental pediatrician and a speech/language specialist. [...]
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