A Typical Morning (A Parent’s Plea)

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!

STOP TALKING!!!”

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.

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Thoughts on fasting after not being able to finish my coffee thanks to my daughter’s morning tantrum

This is the time of year when people of my religion participate in a 19-day fast, where they abstain from eating and drinking between sunrise and sunset. It’s not easy. I don’t think it’s supposed to be. It’s not healthy for the body either. But then, it’s only for people in good health, who aren’t very young or old, who aren’t pregnant or nursing, who aren’t traveling, and who aren’t engaged in heavy labor. I don’t know if it’s out of a sense of religious duty or just a habit, but I have been fasting, and Indy has graciously joined me, which I am grateful for because, as I said, it isn’t very easy. Not to say it’s terribly difficult, either. I can’t say that during the rest of the year, I never skip lunch or have a day where I keep meaning to run out and get a cup of coffee or make a pot of tea and then don’t get around to it. But it does get a little tiring to have so many days of that in a row. And I can’t help wondering if it even matters.

See, in the religion I believe in, there is a particular … blessing, for lack of a better word, on a marriage between a man and a woman. This type of union is regarded as so important to society that anyone holding themselves out to be in a sexual relationship other than in a marriage between a man and a woman could be prohibited from participating in activities related to governing the religious community. It’s not an automatic thing, and it’s not an equivalent to a ban from participating in other types of activities or to being socially outcast or anything. The elected leaders would have to make a determination that a person is acting in a manner that’s harmful to the community before deciding that the person can’t participate in those governmental activities. It seems like I should feel outraged about that, but really, I don’t. Any type of religious belief by definition has to at least in part depend on faith. So I guess it’s just that I have faith that the blessing of a man/woman marriage is a good thing for society and warrants special treatment.

I know I can’t choose who I’m attracted to. But I certainly can choose my actions. I own that. And I’ve made a lot of bad choices in my life, no doubt. Indy isn’t one of them. I love my family and feel very fortunate to have such a great partner and wonderful children. I’m eternally thankful for them. But I have made a lot of bad choices, about what actions to take or what words to say. I regret them all the time. I know I am a “sinner” and that I will never find forgiveness or peace except in my belief that there is a Power in the Universe that is capable of bestowing that peace on me. And it makes me happy to think that there is a Force in the World that makes everything meaningful and sensical, even when I can’t make sense of it. My religion teaches a lot of things that I should do or not do to help myself elevate my soul, and I can’t obey everything I’m supposed to. But I can choose to avoid eating or drinking while the sun is up for a few days. So I do. Even when I can’t finish one darn cup of coffee before sunrise.

 

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What do you want to be when you grow up?

Mocha

Work in progress. My daughter, Mocha, hanging out at the beach. Created with a good ol’ mechanical pencil, .07 mm.

You go through life thinking about this question, being asked this question over and over.   “What do you want to be when you grow up?” I usually gave the standard answer–“A doctor.”  Then, I got fancier.   “I want to be a pediatrician.” Then even fancier.  “…a pediatric gastroenterologist.”

But honestly I didn’t want to be any of those things.

I have always liked to draw.   But I was never good enough.   Even as an adult, I haven’t felt good enough.   I’ve doodled.  I’ve sketched.   I’ve taken a handful of classes.  But I went to college and graduated with a degree in something galaxies away from the art field because my parents told me it was not a lucrative field.   Ironically, I ended up getting my degree in something that doesn’t pay all that well anyway.

So here I am, feeling quite middle-aged and wondering again what I want to be when I grow up.   Honestly, the one thing that has never felt like a chore to me, the one thing I would get lost in, is creating art.  Do I still feel like I’m not good enough?  No.   Maybe I’m not the best at what I can do.   But I can still do it.  And that’s good for something.    I figure what it all boils down to is how well someone is able to present themselves to the world.   Work hard.  Practice. Make connections.

So screw the fact that I’m not Leonardo DaVinci.   Hell, if Madonna can make people think she can sing and succeed for decades in the entertainment field, I can work on pursuing something I love.

Here’s to chasing dreams.

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Lessons Learned?

You know what I learned so far in my journey?

No matter what, I’m still anxious.

I try too hard

I cry too loud

I care too much

Remain too proud

I think too much

See too much pain

Learn too many details

I feel insane

And I get nowhere.   But then there are folks like this guy.   A proud veteran.  Tired, hopeless, unhealthy.   And in a moment he decides to make a change and his hopelessness becomes determination, perseverance, grit.   I can watch this video over and over and tear up each time.  “Never, Ever Give Up”.     Maybe one day, I’ll make the decision to really change, and all the anxiety will melt away from me.  We could all learn from this guy.  What an inspiration.

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Meditation- Day 32, Struggles

I felt very heavy today, so I thought I’d try something pretty different.   Instead allowing random thoughts surface and “gently” moving them along, I planned to repeat a prayer throughout my twenty minutes of mindfulness. So I did. Majnun is Baha’i and one prayer in particular felt appropriate considering the heaviness I was feeling:

“Is there any remover of difficult save God? Say ‘Praise be God–He is God’.  All are his servants and all abide by his bidding.”

Before meditating I took an extremely long walk and ended up at the same exact location on the beach as I was on Day 22, when I felt more open and time moved quickly.    I sat on the same crooked rock andgot into position, this time finding more comfort by resting my feet upon a lower rock.

I set my timer for twenty minutes, inhaled deeply and began to repeat the prayer in my head to drown out any thoughts. The repetition seemed to work pretty well. I also paid attention to the colors behind my eyes that I have been ignoring for the last few weeks. I paid closer attention to the usual fuchsia that shows up, then I noticed a pale green making patchwork of the fuchsia.  Last I saw a pale purple. None of the colors were near as vibrant as they usual are when I see them.  I was somewhat disappointed by this, since I was actively paying attention today.

During the twenty minutes, I also recalled Majnun’s method of clearing her mind wherein she pictures a white wall and tried the same.  However, when I attempted picturing a white wall my mind created  someone standing in front of the wall preparing to write on it.   I let the writing happen and ended up seeing four words:  Truth, Honesty, Integrity, Vulgarity.  Not sure how “vulgarity” fits in, but there it is.

Today, I feel extremely heavy considering everything that is going on with work and at home.   But as usual these, days, I’m gonna keep chugging along.   I’m sure everything happens for a reason.  Whatever the reason is, ultimately it’s up to me to learn how to deal with them in the healthiest way possible.   It’s slow going, but I’m learning to.

On to day 33.

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