179 Miles to Somewhere in Georgia:
A Brutally Honest Reflection on Yesterday’s Battle and Another Life-Lesson Brought to us by the Letter “C”
[For an update on this story, please click here.]
Note: This post is partially rant, partially educational, partially venting, and completely honest. This story follows on the heels of some of the most difficult months I’ve ever had as a mother. I am aware there are “worse” tantrums/meltdowns that other parents may have experienced, but for me, this was a very traumatic experience. This post is very straight-forward, therefore, you might not like it very much. I’m okay with that because — to be honest — I don’t like it either. So, go ahead, you could kick me while I’m down, and lecture me on how to be a better mother, but honestly I couldn’t care less. Today, I’m already so wounded, I think I’m already dead inside**.
If I don’t say this now, I will surely break.
In nursing school, I studied the sympathetic and parasympathetic nervous system. In those lectures, we learned a lot about the chemistry behind the fight or flight syndrome. Consequently, I was under the impression that in a high-stress situation, I could choose. Do I want to fight this bear or run away? I didn’t realize it at the time, but there is comfort in having options. There is control in having options. I can choose to say, “you know, I don’t really feel like fighting this giant angry ape right now. So I’ll run away. If that doesn’t work, then my backup plan is to fight Godzilla.”
Oh, to be young and naive again.
Over the past two days, Cassius (our letter “C”), taught me an important life lesson. He taught me that both in life, and in the world of autism, you don’t always have these options. The universe maliciously steals your backup plan, then stands back and laughs at you*, as you helplessly stand in the pouring rain, grateful for it’s stinging raindrops because they hide the tears streaming down your face. I really need to buy water-proof mascara.
I consider myself pretty darn tough — I mean, I lived for two years without food. I’m fairly certain I’ve got like 6 of my 9 lives left**. I graduated from college without ever attending middle or high – school, and never received a formal GED. On September 11, 2001, I was five months pregnant, and stationed on board the USS Germantown. With only a skeleton engineering crew, I got the 610-foot long, 17 ton ship underway; as we had to move the giant ship away from the pier immediately.
I’m tough, dangit. Under this tee-shirt is a battle cuirass. Under that is my chain mail. And you might think I’m wearing makeup, but it’s not makeup. It’s warpaint. I’m tough. I’m tough. I’m tough.
But even so, I was no match for Cassius yesterday. Yesterday was a complete disaster. It all started with a phone call from the schools’ vice principal’s office. It was Cassius, and he was wondering if I would help him clean out his locker when I picked him up from school early for his occupational therapy (OT) appointment. I agreed.
Now, Cassius is very regimented about time and schedules. I was supposed to be there at 1:12, but I was running a few moments late. Wanting to avoid a Mom’s-late-meltdown (that is actually a thing!), I called the school’s secretary. I told her I was on my way, to tell Cassius I was running late, but on my way. Don’t freak out, kiddo, I’m on my way. Even running a few minutes late was no biggie, as we literally had 90 minutes to get to his OT appointment, and it takes 20 minutes to get there, traffic depending. We had plenty of time to clean out his locker, despite my tardiness. I recalled thinking it’s odd they want him to clean out his locker a week before the end of school, but whatever. Then, I recalled the past ten months of fighting with the school, thus having to resort to litigation to keep him safe at school and get an IEP implemented. I imagined the vice principal, her hair frazzled and frayed, her clothes torn and tattered, as if she’d just been through some sort of zombie-fighting apocalyptic battle, and at her wit’s end. I imagined her yelling, “GET YOUR CRAP AND GET OUT!” That mental picture kept me laughing for the remainder of the short drive, and made me smirk when I walked into the office and saw her sitting behind a desk. I’m sure she is tired of fighting with this mama bear. The feeling is mutual.
I signed him out, trying to get the mental picture of the crazy-end-of-school-year-zombie-apocalypse-fighting-VP out of my head. I signed him out, and spun around to speak to my son. “Hey kiddo, lets go clean out that locker.”
“No. No. No. No, Mom.” I was confused, then realized he was anxiously fiddling with his watch. He didn’t think we had enough time. “It’ll just take a few minutes, kiddo. You haven’t even used your locker all year. We’ll just grab the stuff you don’t need, and head out.”
“No Mom. C’mon, let’s go. Let’s go.”
“You asked me to clean out the locker, let’s go.” I started walking toward his locker, him protesting and lagging behind. “Come on kiddo, you are wasting time. Please don’t make this a thing. I won’t have time to help you do this next week, so if I’m going to help you with this, we need to do it now. We have plenty of time.”
Now he’s digging his feet in**, being stubborn. “NO! Lets just go. Lets go, mom. Please. Please. Please. Let’s go. I’m BEGGING you.” Now he is crying, rocking, flapping.
“Those are repetitive vocals and movements. Are you really going to have a tantrum over this?” Once he realized that he was having a tantrum, he got really upset, because he has a goal to go 7 days without a tantrum, and this was his 7th day. (There is a big difference between an autistic meltdown — of which he has no control — and a temper tantrum, which he does have some control. We’ve been trained in determining the difference, and while a tantrum can cause a meltdown, and vice-versa, at this point, I had no doubt that this was a tantrum.) Knowing that he would be disappointed and upset if he had a tantrum on the last day of a tantrum-free week, I offered him ten seconds to pull himself together, and encouraged him to take a few deep breaths. In fact, I offered him ten seconds to pull himself together three times. Use your coping skills, kiddo. You can do this.
We never did get to his locker.
I realized it just wasn’t worth it, so we left. As we exited the building, he threw his backpack on the ground, and took his electronics bag (with his expensive adaptive technology equipment) and smashed it on the ground. Screaming in frustration and anger, he ripped off his school lanyard and ID (very “Hulk-like”*), and threw it across the parking lot. I got him into the car, and sat in the parking lot, waiting for him to calm down before I attempted to drive. The last time I was driving while he was freaking out, he almost killed both of us. So he is in the front seat of the car, punching the door and dash, and kicking everything he can reach. He begins to spit and maliciously playing with the settings on the console.
Cassius’s autism team has given me thorough instructions for “what to do,” in these situations. Appear bored. Ignore him. Don’t engage. Breathe. I played on my phone while he raged beside me. Before we started working with this amazing ABA (Applied Behavior Analysis)/Mental Health team, I would have handled this by talking him through this, ultimately either giving him whatever he wanted, or making everything in his world adapt to him. The fact that I’m no longer rescuing him seems to anger him more (understandably so), and even once he appeared to be calm enough for me to begin driving, he tapped my shoulder for the entire drive. “Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Hello? Are you there? Mom. Mom. Mom. Mom. MOM!!!” Too angry to cope, he begins punching the dashboard again. I was humming along with a song, so he turned the radio off. I turned it on. He turned it off. I turned it on. He turned it off. I left it off, and continued humming without it (there is hardly a worse natural consequence than hearing me sing!*).
We arrived, amazingly, about a half an hour early. The storm clouds were gathering, both inside and outside the car. An angry bout of thunder crackled and was close enough to shake the car windows. The air was humid and heavy, the clouds blackish grey. Now, he has determined he was not going to get out of the car. I parked as near the entrance as I could, but we were still near the “riders circle,” of parents picking their children up from the private school that is run by his autism team. The rain was just moments away, and it looked angry.
“Okay we are here. Do you want to play on the IPad inside? If you come inside you can play the IPad until it’s time for your OT appointment.” (Being that he was in the middle of a tantrum, and should not have any screen-time at all, this should serve both as a treat, and an opportunity for him to distract himself and hopefully cool off a bit).
“I’m not going.” He said, defiantly. “I’m a FAILURE!” he yells, and starts punching the dashboard again, overcome with frustration and anger. I know he is feeling angry and disappointed with himself; but at this point, I’m not sure what exactly I am supposed to do. I hadn’t thought to ask his talented and smart behavioral analyst, Matt, how to get a mid-tantrum-oppositional-Cassius OUT of the car. I hadn’t ever thought I would need that information! Unsure what to do, I sit with him. He is punching, kicking, spitting, and dismantling anything that could come apart. He picks up a lighter and lights it. I snatch it away. He then picks up a pen and holds it with a closed fist. “I’m thinking no sharp objects,” I blandly replied, trying to sound bored, and took that away from him, too.
“Fine. I’ll get out of the car.” He declares, after what feels like an eternity. Finally, we are going inside. Once inside he’ll be distracted enough he’ll be a little better. I close the door, lock the car, and start walking toward the door. It’s starting to sprinkle, which is hurricane seasons’ version of a “yellow light,” warning*. After a few steps, I realize he’s not behind me. I turn around — I don’t see him anywhere. Where did he go? Anxiously, I make eye-contact with the first driver in the “car-riders circle,” who is staring at me with a mixed look of compassion and horror. Her eyes clearly say, “I’ve been there, I’m so sorry.” I followed her gaze, and walked around to the passenger side of the car, and I see him laying on the ground, completely sprawled out, in the parking lot, barely ten feet away from the busy car-riders circle. In the rain.
“I’m out of the car,” he says with cold, angry eyes.
Translation: you can’t make me do anything I don’t want to do, and right now, I want to be as difficult as possible. He weighs 30 pounds more than I do. It’s still sprinkling, but the promise of a drenching pour is moments or seconds away. Helplessly, I resort to old tactics. There are no instructions on this. None. “Please come inside, Cassius.” Now I’m the one doing the begging. After several moments, the rain begins, and it is as violent and angry as Cassius is feeling. Somehow I got him to stand up, but he is not walking. Instead, he is laying on the hood of my car, dismantling my windshield wipers.
“Maam, are you okay?” The voice was kind, worried. I turned toward the voice, and saw one of the behavior analysts standing behind me. I started to respond with the expected, ‘we’re fine,’ answer, but caught myself. “We’re fi—-, actually, no we are not. I cannot get my kid to come inside.” My voice broke. “Can you get Matt please?” Please let Matt be here, I prayed, I don’t know what to do.
It’s pouring now, and finally Cassius agrees to walk inside the building, but he slammed the door in my face and held it shut, so I was stuck in the drenching Florida summer rain. Little did he know, I didn’t really mind. There was a glass door between us, he was inside the building, and the rain felt beautiful, cleansing, and perfect. I looked over my shoulder at the parents huddling under their umbrellas trying to get their special needs kiddos — most of which are terrified of this bad weather — into their car seats. Despite the umbrellas, they were getting soaked anyway, as the wind whipped the rain sidewise.
Part of me felt bad for them. Part of me felt connected to them. And part of me was glad, as if the whole region was suffering Cassius’s wrath — not just me. Does that make me a terrible person? Maybe. But like I said, today I am dead inside**.
Once inside, he continued to be oppositional and defiant throughout the entire OT appointment. I genuinely felt awful for the young occupational therapist. Nobody deserves to be treated the way he was treating us. I’m pretty sure the United Nation’s agreement on human rights explicitly forbids torture and inhumane degrading treatment*. Luckily for Cassius, it also forbids the use of the death penalty for anyone under the age of 18*.
There was only one thing to do and that was call for back-up. I called his father, and since I was already wet, I stood outside feeling the rain on my face, until I realized that I was looking like the crazy person, and walked back inside. His father arrived, and Cassius returned to us, still disgruntled, followed by a slightly frustrated but amazingly compassionate occupational therapist. Cassius was doing a little better, but the damage, to me, had been done. For him, it was already over. It’s no big deal. He didn’t understand why I was so upset. Why is it a problem that he laid down on the ground? He lays on the floor in his bedroom all the time. He doesn’t understand.
His father could tell I was not okay, so he drove Cassius home. I sat in the car for a few minutes before I turned the key. I looked over to the passengers’ seat, the place that just an hour earlier was filled with anger, strife, and defiance. My eyes glanced at my dash, proudly announcing “179 miles to empty.” 179 miles. Never before had anything ever sounded so wonderful in my whole life. I could hit the interstate heading north, and drive until I ran out of gas. I could run away. In my mind I imagined where 179 miles could take me — probably somewhere in Georgia. Suddenly Georgia became a dream paradise: an oasis. All I had to do was turn the key and step on the gas pedal and I could be there. I was tired of the fight: I could fly away. To Georgia.
My car might have had 179 miles to empty, but I was completely out of fuel.
I turned the key and drove, I honestly wasn’t sure where I was headed. There is a stop-light before the on-ramp to I-95, and I gazed out my window at the driver beside me. She was heading north, I wasn’t, and I was jealous. The light turned green, and I drove home. Because in real life, you don’t always have the option to run away. Because in real life, the real battles we fight we never really can run away from, they follow us everywhere, even in our dreams. This week Cassius taught me that in life, oftentimes our biggest monsters and challenges are battles we cannot run away from, no matter how bad the battle gets, or how wounded we become. You stay and fight until either we are victorious, or we are dead.
I was weighted down as I walked towards the front door, as if concrete blocks were chained to my ankles. The door was heavier than usual. Once inside, there was another, albeit smaller, tantrum when I presented him with consequences for his actions. Too weak to battle again, I went to my bedroom and locked the door. My husband, my knight in shining armor**, tried to talk to me about what happened, and all I could say is, “I’m done.”
Today I am broken. I am nursing my wounds in this cocoon of words, and trying to gather up my strength to return to this war. Because even though I said “I’m done,” I will never really be done. I will never stop fighting. I will never run away.
Georgia will never be.
I would like to think that I’m tough. But I still get wounded, and right now I’m just a little wounded from the latest battle.
UPDATED: So, I was completely wrong in this post. If you’ve read this post, you need to read the follow-up post, it’s pretty important. Thank you.
* indicates the use of sarcasm, placed specifically for clarification purposes.
- ** indicates use of a figure of speech, placed for clarification purposes.