I exist every day, every minute, every hour walking on eggshells, trying to avoid meltdowns, threats, episodes that leave my daughter screaming in uncontrollable, rageful fits and empty horrific stares. She’s left bald, bleeding, bruised and exhausted.
A scratch, a tear, the wrong thing at the wrong time can be a trigger. What is the wrong thing? When is the wrong time? It’s hard to tell most of the time. It could be anything.
Hair pulling, eye gouging, punching, kicking, YELLING, SCREAMING, RUNNING, YELLING, SCREAMING, FUMING.
This morning we knew what the trigger was. My daughter woke up, crying that no one was upstairs in the bedroom cradling her, holding her. In the last few months she has slept in our room and every morning she wakes up like this. Today, Majnun and I had gotten up earlier for coffee, to discuss our plans, to prepare for the day. Suddenly we heard our daughter whining, then screaming, then demanding we come upstairs. “COME UPSTAIRS! WHY IS NOBODY IN HERE??!!!!!” The urgency of her screams increased within a three minute span. We briefly discussed what we should do? Do we give in to these immediate demands? Do we wait? We battle this with everything, everyday. We don’t want to leave our child to suffer. But we also don’t want to give in to random demands.
There are always random demands, and we are sometimes able to work through them. Sometimes we are too late and the demands are made while Mocha is in the middle of an episode. “GO STAND IN THE GRASS!!!! TAKE THAT PICTURE OFF THE WALL!!!! LEAVE ME ALONE!!!! I’LL PUNCH YOU IN THE FACE IF YOU DON’T STAND RIGHT HERE!!!” We stand back and watch helplessly as she becomes even more rageful. She charges us, she pulls her hair. She runs into the street. She pushes her brother. She doesn’t seem to be herself. She’s gone.
Once, Mocha ran outside in her underwear, down the street. Screaming, pulling her hair, grunting. She didn’t notice the cars in the street. I ran after her and she screamed at me to “GO AWAY!” I caught up to her and held her. We fell on the ground and she tried to bite me. Her eyes were vacant, but she looked scared at the same time. Trapped in whatever hell she suffers from when she has these episodes. She pulled out half of her hair and scratched her face to the point where she was bleeding, but continued to scream at me to let her go! “GO AWAY!!!!” I was scared to let her go but I did because in some ways, holding her made it even worse. Eventually the episode ended as it usually does. The Mocha we were familiar with returned and she was exhausted and remorseful. “I’m so sorry. I feel so bad” she said. Mocha fell asleep.
This morning, we wanted to avoid an episode but we also wanted to maintain some sense of control. Majnun tried to speak to Mocha in calm, even tone.
“Come on downstairs. We’re here. Come get some breakfast.” The house is small and the stairs are relatively close to where we were sitting. The calm tone did not work and Mocha’s screams became louder. We heard her on the top of the stairs. Majnun walked over to meet her at the bottom of the stairs. Mocha screamed.
“YOU DIDN’T COME TO THE BEDROOM!”
She came downstairs and continued to scream. I offered Mocha breakfast and she yelled at me to “GO AWAY!” She stood staring at us. “I’M MAD AT YOU!!! YOU DIDN’T COME. BOTH OF YOU GO UPSTAIRS RIGHT NOW!!! GO UPSTAIRS RIGHT NOW! I’M ANGRY AT YOU!!!” Mocha pointed and continued to scream. I tried to recognize her feelings.
“Mocha, it’s okay for you to–”
“DON’T TALK TO ME!!!
STOP TALKING NOW!
This is nowhere near the most intense episode. Mocha is still fairly calm, even though she is yelling. Her eyes are not vacant. She is present but she is working herself up. Still, the morning has been disrupted. Lunches and snacks still need to be made. Mocha hasn’t had breakfast. No one is dressed. Mocha’s brother, TJ, is still sleeping in the room.
TJ is younger, calmer. We used to wonder if we were doing something terribly wrong as parents for our child to have such intense issues. People told us we were doing it wrong from the time she was a year old. They said to ignore Mocha’s demands. They said to ignore her self-harm. They said that we spoiled her by giving in at all. They told us to distract her. They told us to close her in a room and let her work through it. They told us she was probably going through a phase. They told us we were just being worried for nothing. We were helicopter parents.
We spoke to the pediatrician and she referred us to a psychologist. The psychologist told us Mocha probably experienced trauma from her C-Section birth. She then introduced us to “The Happiest Toddler on the Block”.
We tried “The Happiest Toddler on the Block” with Mocha. It didn’t work. Mocha screamed louder when we acknowledged her feelings by identifying and mirroring them. Mocha would return to something she wanted HOURS after being redirected. And leaving Mocha alone in a room was never an option. The wounds she inflicted on herself were too serious. Mocha’s self harm left trails of blood on the carpet and across the floor.
When TJ was born, we instantly noticed he was different. He was never as intense. He handled changes fairly well. He has tantrums, sure, but they’re brief. The longest tantrum TJ has had is about five minutes. Ignoring works with TJ. Even “The Happiest Toddler on the Block” works. TJ’s reactions never escalate into a controlling rage. He screams for the blue plate when we give him the orange. If we have the blue plate, we give it to him. If we don’t, we say, “You want the blue plate. But we can’t find it right now so you have to have the orange one today.” He may remain upset a little longer, but not too much longer. We talk to him. We distract him. We hug him. And the situation is over.
Our ability to parent TJ is being affected by our inability to effectively parent Mocha. Sometimes he is left hanging in the background while we figure things out. Sometimes we have to split up and take TJ to a different area while Mocha is having a meltdown. Once, Mocha pushed TJ away from her when he came to comfort her and his head hit the wall rather hard. Once, Mocha attacked Majnun and TJ tried to defend his mama.
“STOP, MOCHA!” he said. I removed TJ and explained that Mocha is upset but that she will be okay.
“Okay.” TJ responded in a sad, quiet tone.
Sometimes, no one has to explain to TJ before he says aloud to himself, “Mocha is just upset right now. She’ll be okay.”
Again with the sad quiet tone.
This morning, he was completely ignored while both Majnun and I were downstairs. After a while, Majnun announced that she needed to take a shower, and Mocha threatened to run out into the street. She then ran out the door and Majnun asked me to watch her.
I followed several yards behind Mocha and watched her. In my observation, she is still very aware of herself. She runs further away from me but continues to look back. She moves out of the street to let the cars pass by. I stop and see if she is going to continue.
Mocha keeps going. But her run comes to an indecisive trot and then a walk. I eventually get the car and follow her. I stop alongside her. Mocha asks to get in the car as if nothing ever happened. I let her in.
“That was really unsafe, Mocha.”
“I’m so sorry. I shouldn’t have done that.”
“You could have gotten hurt. And people don’t walk around in their underwear.”
“I feel bad. I’m so sorry.”
We finally get in the house and get back on track. Majnun and I rouse TJ and get him dressed. We help Mocha get dressed. Then I get snacks and lunches for the day. I throw on my clothes, brush my teeth. Skip my shower. Eventually everything is finally ready and we head out the door.
This is my morning and this is potentially every morning and every evening of my life. And I wonder how many others are out there like me. How many parents are floundering with a child that seems to have special needs that aren’t quite identified? Or, have children with these issues that have been identified. Are you out there? If you are—how are you dealing with it?
Because today I’m barely hanging on.
Maybe tomorrow will be better.