Protect

When Justice starts to complain about all his aches and pains, when he starts searching for sleep, I start to worry that he’s detoxing from something; that he’s self medicating. I become more anxious as he grows more desperate and agitated.

He retires to his room and I am left wondering, is he ok? Is he healing himself? Or is the noise in his head about to hold him captive all night long, and leave him exhausted by morning, with his mom forcing him to get up, get ready and get out the door for school?

I complain he doesn’t get a job so that he can drive and then I imagine, what if he did and then would I really want him to have access to a car when he’s struggling with his demons?

That’s not something I can take back, easily. 

Maybe God is still protecting us.

I am, once again, reminded that he is not normal. He may never be normal. I may never be ready for him to grow up. The risks just keep getting greater. I would rather have him, not normal, than to lose him forever.

Is this getting easier for him? Is he more in control? I know he has more control of his monsters, but is he controlling them? Or is he letting them roam, until they are out of control?

God, please continue to protect me from the unknown.

Please continue to work inside of him, to tame his demons. Empower him to take control. He is your son, and the spirit of Christ lives in him. Build his faith in you. Give him strength when he is weak. May his inner monsters shutter at your name.

Stay with us, both. Always. Protect and shield.

Amen.

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His Normal

Why can’t my kid be normal?

My heart is heavy. A few weeks ago I celebrated my son’s two year anniversary of his Pyrrole Disorder diagnosis. Life has never been so easy for him.

So I thought.

He’s been more social, making a conscious effort to hang out with his friends to play basketball. He had been hanging out with a couple of girls. He talked about getting a job once he turned 16. He’s been easier to live with. Less meltdowns. More smiles.

But something started to happen two weeks ago. His depression and anxiety started to rear their ugly heads.

He confided in me, life wasn’t going as smoothly as I had assumed.

Why? Why can’t my kid be normal?

He’s not been sleeping, something I thought finally was no longer a problem.

This kid has never slept. As an infant, we were always up every couple of hours. As a toddler, I would wake up to him on the floor next to my bed, on the sofa that was right outside my bedroom door or I trip over him sleeping on the floor on the other side of my bedroom door. He’s shared with me, in middle school, after I’ve gone to my room for the night, he would sit in the hallway, out of sight, and watch TV with me until I turned it off, or I feel asleep.

Now, behind his closed door, with lights off, he lays there staring at the ceiling, alone with his negative thoughts. From time to time I would hear faint music or voices coming from his room, but I figured if he could still get himself up in time for school, I wouldn’t enforce a bedtime.

Yes, I am very aware of the expert advice of not allowing electrical devices in the bedroom at bedtime. But if the electrical devices are what’s keeping him up, why has he NEVER been able to sleep? And if the electrical devices drown out his negative thoughts, why would I take them away?

He’s not alone here. His dad has trouble sleeping at night. His grandparents were always up all night and slept during the day. My mother has always used sleep aids. Even his older and younger brother struggle with getting and staying asleep.

It sucks for all of them.

But, they’re not staying up for days at a time. They’re not have audio and visual hallucinations if they’re up for more than three days. They’re not falling asleep during class. They’re not getting stuck in their negative thought process. They’re not living without hope.

And if they are, I’m so sorry they are going through this alone.

This son of mine, is not shy about spreading the misery he feels. And I wouldn’t have it any other way. When I start to feel sorry for myself, I think about how much more difficult it is on him. This isn’t something he can quit and walk away from.

But why can’t my son be normal?

I really thought the new diagnosis was our miracle. His mood has been lighter. The dark cloud that lingers over our house, has been lifted. I stopped waiting for the microburst, that is my son, to hit without warning. And maybe his treatment had made life easier but obviously it has its flaws.

This is my son. This is his struggle…for all of his life.

Why can’t my son be normal?

Our Miracle

I sat across from Justice’ doctor and heard her say, “Since it’s been over a year since his last meltdown and he’s been off all his meds but one, I’m going to remove the diagnosises of Disruptive Mood Dysregulation Disorder, Pyschotic Disorder, and Receptive/Expressive Disorder from his treatment plan and change the Obsessive Compulsive Disorder to Anxiety. If that’s okay with you.”

Wait…Wha???

I sat back to reflect our last year.

Never in my wildest dreams would I even allow myself to dream of Justice living like this. I told his previous doctor if we could just get his meltdowns to once a month, I’d be thrilled.

Here we sit, discussing my son, MY SON who has struggled with life since birth. Struggled with expressing his feelings appropriately.

Whether he was happy or sad, he was always disruptive. Most of the time he was neither, and yet both at the same time.

He was dark and gloomy. A dark cloud hovered over our house.

I walked on eggshells around him as a baby. He had terrorized his siblings ever since he was a toddler. Middle school is when I stopped letting him be alone with his younger brother after receiving a phone call that he was chasing his younger brother around the house with a knife.

No one knew what was going to set him off.

No one knew when it was going to happen.

No matter how many times it did, no one was ever prepared.

He would start by clinching his fists and breathing through his clenched teeth. His eyes would widen, his face would turn red and he shook as he would speak, before he would violently turn into an erupting volcano.

He would scare me. He would terrify his siblings.

He would throw things, break things, hit things. His voice would change to one I wouldn’t recognize and he’d say things like, “I don’t care! I wish I wasn’t apart of this family! I hate you! I’m going to kill you! Call the police, I’ll make them shoot me! I wish I was dead.”

And of course, I was always afraid to call the police, because I was afraid he would be shot. So I delt with this alone. It wasn’t quietly, as you could image, but I was alone.

Then there was the day he whispered to me through a closed door that he heard voices. That they tell him to do things he doesn’t want to do. This was after he had pushed me for the first and only time.

I remember at five, pleading with his doctor to help me. I was afraid if I couldn’t control him at five, how could I ever control him at fifteen?

I was brushed off. I was told he was going through a phase that he would outgrow. I knew better. I knew differently.

His father told me time and time again his behavior with me was due to bad parenting. “He doesn’t behave that way with me.” Although, they only saw each other four days a month, and he was threatened if he acted up he would be sent home to his mother.

At school he was suspended more times than I can count. Most of the time it was because he wouldn’t explain his behavior and they felt he was defying their authority. They would send him home. When I would ask him what happened, he would say he didn’t know. At one time I told him just to confess to whatever they thought he was doing but he told me, “That would be lying. I didn’t do what they say.”

He was always misunderstood. I was one of them.

Why do you have to make life so hard? He couldn’t tell me.

As he got older, his meltdown became more scary. He would be sobbing and tell me he had done something horrible to someone, when I knew there was no way he could have done anything, to anyone. Although he would never tell me exactly what he thought he had done, he would act with such grief and sorrow as if he had killed someone. No amount of comfort could console him.

As the exhaustion of his meltdown would overcome him, he would curl up into a fetal position and cry on the floor in his closet, or behind a sofa, “I’m sorry. Please don’t hurt me. I’m sorry.”

Sometimes I could stroke his arm in comfort and reassure him he was safe, but most of the time I couldn’t. He would jump and move away from me. “I’M SORRY! I’M SORRY! PLEASE DON’T HURT ME!”

Who the heck is hurting my little boy? I thought I was watching my son lose his mind. I felt so alone. I felt so helpless. I felt so hopeless.

When he wasn’t having a meltdown, he was so incredibly sweet. Oh my gosh, he cared if he hurt someone’s feelings. He was so funny. He goofed around. He loved with his whole self.

But something would snap. It always would snap. He would turn into the Hulk. The difference was like night and day. And it would break my heart because I knew how much he hated to be like this.

He would tell me, “Mom, just let me go. I can’t anymore. I don’t want to do this, anymore.”

But never, never would I give up. Never would I let him go. We were in this together, as much as that sucked.

And then one day, out off the blue really, his doctor thought about maybe testing him for Pyrrole Disorder.

It had a test. And not one of those pen and paper tests that change with interpretation. No! This was a urine test.

He tested positive. That was great, but the treatment seemed iffy. Supplements I could buy over the counter.

At this point, he’s on Seroquel, Depakote, and Prozac, and she’s feeding me this line that he might be able to come off all these meds, or at least reduce them greatly, after years of playing with other cocktails of meds until we came up with this one.

I was hopeful, but not holding my breath. Mother’s of children with mental illness know, diagnoses and medicines always change, but never go away.

Throughout this last year, I slowly started to watch him change. He would get angry, and I would be ready to put out the fire, but the fire never came.

He became more social. He joked around a lot. He would raise his voice and then laugh at us as everyone got ready to watch him blow. He thought our PTSD was funny.

He’s still got that weird sense of humor. He likes things that are dark. He’s completely inappropriate. He likes to tip his toe over that line of respect, and then laugh it off. He thinks grossing mom out or making her worry or upset is funny.

He thinks he can make everything alright when he comes up to me and gives me a big hug, “I love you, Mommy!”

And he’s usually right, cuz I hug him back, “I love you, Jus Jus.”

And then he’ll say something just as offensive or as obnoxious, just to get one more, “Justice!”out of me as I push him away, and he can laugh one last time.

Oh my gosh, he’s a complete pain in my butt, but for an entirely different reason.

He’s a normal teenage boy.

His mood has been stable, that was the Mood Disorder. He hasn’t complained of any voices, the Pyschotic Disorder, and he seems to be able to express himself and is not getting confused anymore, the Expressive/Receptive disorder. You said yourself, it’s been over a year.”

“It’s been a miracle.”

“It really has. You should make a YouTube video of your journey.”

“Well, I write a blog. You can READ IT ALL, at KimSimister.com” 🙂

Dear Heavenly Father,
Thank you for your blessings. Thank you for your grace. Thank you for your strength. Thank you for your guidance. And thank you for our Justice. Amen.

In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation. – 1 Peter 5 :10

Buried Treasure

As Justice would put it, it would hurt too much to care, so he didn’t care.

He would collect things. I never understood why he would collect trash.

The night after Tunes left, Justice and I talked before bed. We were both having a hard time with the fact that Tunes was no longer there. He was glad to have his room back, but he didn’t want it back like this.

“You can cry Justice, if you want to. It’s OK.”

During this conversation, he picked up an empty box and told me he couldn’t throw it away. It was the box to Tunes’ vape pen. He said he left it when he came to pick up his stuff.

He then showed me other things he couldn’t throw away even though they may be old, or broken or just trash. Some of the stuff he didn’t even want around, but couldn’t throw away.

He showed me the pillow I made years ago out of his dad’s old shirt. I made one for each of the boys but he’s the only one who has kept his.

A funky looking turtle I made. I hate that turtle, but he says his awesome mom made it.

He was distraught over losing a rock that was shaped like a heart that I had given him.

He had a big o’ pink pig that makes noises when you squeeze it’s foot, and is super comfortable when used as a pillow, that he pulled out of the donation bin that his sister threw in.

He talked about all the stuff animals girls have given him over the years. Even in kindergarten and first grade, girls were always giving him presents. I could never figure that out. He’s kept them all. He told me one of them was a monkey he couldn’t throw out, but gave to our dog because it freaked him out. Of all the toys the dog destroyes, this stupid monkey still hangs around the house.

When he was younger his room was a mess. He has always been a horder. He’s actually gotten much better.

He would refuse to clean up his trash. When I would go in his room with a trash bag he would completely lose it. He would tell me I was throwing away his treasures. So even though he would never clean his room on his own, he would sit next to me and tell me what was trash, what was toys, and what was his treasures.

I never understood why empty styrofoam cups and chip bags could be treasures, but now I’m seeing they were things his dad or someone had bought him.

Even the empty boxes of toys that have been broken, lost or given away, he would keep.

At the end of his kindergarten year, his teacher was retiring so so gave him the plastic bin that stored all the bugs and dinosaurs he would play with in class. He is fifteen years old and he still has it.

As we talked and as he explained to me his treasures, I started to put together my child who felt nothing, stored his feelings in his things.

Maybe then he could always hold on to them. They wouldn’t change. They wouldn’t leave. They were frozen.

He said he didn’t like to care because caring would hurt. So for years he stopped feeling. He stopped caring.

But he’s learned that even though he put his feeling in things, he couldn’t stop hurting. He would explode.

He told me, he learned to cope by learning how he needs to care, even if it hurts. Feeling the hurt takes away his pain and makes his life a whole lot easier.

I’m so stinkin’ proud of this kid. And I’m so grateful for him being able to unlock the mysteries of his childhood behavior. We are blessed.

So my son cried. We both did. And you know what? We both feel better.

Singing Praises

It’s super late, or super early, actually. I need to be sleeping. We have a HUGE day tomorrow. It’s our Memorial Weekend BBQ, and we have so much to do, still.

But can I sing the praises of my Justice before I go to sleep?

This child, who I have fought with since his birth… The one I sent to live with his dad just six months ago… He is back and he has really, really turned into a fine young man.

Oh my gosh I love him so much.

So much time, so much energy, so much heartache has gone into his life. And today I see a young man I could only dream of.

He is bursting with personality. Those he let’s see him, love him. He is funny, and sarcastic, and loving.

Tonight, he took the M&Ms away from me, because he cares. He came out of his room and played with his sister’s friends. He let one of them show him up, in a game of string.

He laughed. He yelled. He continued to smart off, “What the fluff?” whenever he would get his hands tangled.

He was pleasant. He was friendly. He was happy.

I am blessed. I am grateful for such a gift as he. I am honored to watch him grow. I am in awe of the craftsmanship that lies within.

He is remarkable.

And not because of his grades. Not because of his behavior. Not because of his ability to take common, innocent nouns and sometimes verbs, and turn them into swear words.

But because of his perseverance, his strength, his ability to change, his uniqueness.

He drives me absolutely insane. He sends me completely over the edge. He challenges my role as his mother, daily. He is the biggest pain in my….backside.

And yet I would not have him any other way.

I love him, not only for who he is, but for who he makes me be.

Well done, Jesus. I can see in him, a strong resemblance of his Father. Continue to mold him, sculpt him, refine him with fire. But make him yours, so that he may draw others to your side so they may bow at your feet.

All for your glory, Lord. He is for you alone. Amen.

My Son, the One with a Broad Future

Two and a half years ago I found myself at a child’s advocate organization, trying to get help for my kiddo.

He was failing.

Life for him, and with him, had always been hard. That was something he had struggled with much longer than two and a half years.

But now he was failing at school. He hated school. He hated his teachers. He hated his classmates. He hated homework. He hated school work.

I knew something was terribly wrong and couldn’t understand why he was in a remedial reading class, when two years prior, he was his class’ top reader.

I also couldn’t understand why the school didn’t see there was a problem, and it wasn’t just with his reading.

I wanted him to have an IEP, Individualized Educational Plan. It would allow him extra supports that was personalized to his needs in order for him to succeed in class.

I had to fight for it because although he had a disability, it wasn’t a learning disability.

At first, his school flat out refused to evaluate him even though his disability qualified him for at least testing, and he was failing.

It is true his behavior had just started to change. He hadn’t been failing for years, but I could see him spinning quickly in a direction I didn’t want him to go.

The short time frame, may have been their reason for not wanting to test him. I was told if there was anything I should be concerned with, they would be able to identify it before I could. They thought it was too soon. They didn’t want to label him.

I could appreciate that, I didn’t want to label him either, but my son needed help.

The organization helped educate me as to what my rights were and more importantly, how to let the school know I knew my rights.

After I was dismissed by the school psychologist and refused testing, I promptly emailed the school psychologist, school principal, and the school district stating I wanted an independent evaluator for my son.

Before the end of the day, someone from the school district had called to apologize and informed me their school psychologist had misrepresented their school and they would be more than happy to proceed with the evaluations, if that was still something I was interested in pursuing.

It was.

It was hard for me to go to that next meeting. I felt like the squeaky wheel, and I don’t like being the squeaky wheel. I’ve never been one who liked to rock the boat. I’m a people-pleaser, a recovering codependent.

So to sit in that meeting with all those school representatives looking at me like I was wasting their time, was all I could do from drowning in my own puddle of tears. Keep it together, Kim. One person even asked why were meeting again; wasn’t the decision to not test already made?

I knew it would be a slow process. It took time. It took a lot of time. It took a lot of people’s time. That was made perfectly clear.

But my son was struggling! He was growing more and more impatient. He was being suspended frequently. He was caring less and less. His self-esteem was crumbling. He was becoming more violent and more threatening. He was more out of control.

I was scared.

Days before the results meeting, the school psychologist had called for me to come in. They weren’t able to get all the evaluations completed. My son had refused to do some of the tests.

She wanted to make sure I understood, in the next meeting we would be determining if my son qualified for an IEP based on ED, an emotional disability or emotionally disturbed. She wanted to make sure I understood if we go through with this determination, that it would affect the rest of his life. It would mean he could never be in the military or any public service position like that of a police officer or fire fighter.

I turned to face her, my hands clutching a tear filled tissue with black eyeliner smudges, and told her my son has a mental illness that I don’t understand.

How our society deals with people with a mental illness is by putting them in jail or putting them on the street. I was aware of the broad range of jobs between being a police officer and living on the street, and I’m completely ok with it.

I would be thrilled for him to have the opportunity to pursue any one of them. But my son needs help. If he doesn’t get help, I’m afraid we won’t have to worry about whether or not he would be able to serve his country in the future; he won’t have a future to worry about.

He will be dead. Because that, unfortunately is the third option for people with an untreated mental illness. I’m asking you to help me, help my son.

That was almost three years ago. We got his IEP as well as counseling and other treatment.

As a sixth grader, I felt his future was very bleak. People worried about their teens graduating high school, I wasn’t sure if my son would make it to eighth grade.

But here I was tonight! Looking at my son standing with his class as they were being promoted on to high school.

I caught a smile from time to time, too. He stood tall. He had on a tie and his shirt tucked in. He took pictures. He cracked jokes. He said goodbye to his friends for the summer.

I saw him.

I could see him standing there somewhere in that broad range of excelling and failing, and I was ok with it. Just like I knew I would be.

I’m so proud of him. I’m so proud of us.

YOU DID IT!

This is My Son, Justice

Today seems like an appropriate day to introduce you to my son, Justice. He builds my faith. I love my son not for just being mine, but for being who he is and who he will one day become.

It was a year ago today, that I checked him into a behavioral health hospital. It was the hardest thing I’ve ever had to do.

I really felt I had no choice, but looking back, I’m so glad I did. It has changed 12 years of living. It has changed everything.

My son lives with a mental illness that affects the whole family. From the time he was an infant, we have been held hostage.

He never, ever, liked to be touched, or cuddled. He cried. There was no soothing him.

As he got older we would tip toe around him. Anything could and would set him off. I called him a baby dinosaur.

By the time he was two, he was already terrorizing his older brother as well as his new baby brother.

I thought for sure he was going to kill his baby brother. While I was pregnant I started carrying around a doll in a car seat and calling him by name.

Everywhere we went the doll came too. Grandma’s, restaurants, babysitter’s…

We practiced feeding the baby, and washing the baby, and holding the baby. As well as, not hitting the baby, or sitting on the baby, or my favorite, not throwing the baby.

In grade school he would turn into what I would call the little Hulk. His anger escalated as he reminded us daily, “I don’t want to be apart of this family! I wish I was dead!”

Jr. High…I have no words. It was the worst. There was no one to help. Doctors didn’t have any answers.

Now he was beating things, throwing things across the room, threatening, “Call the cops! I’ll make them shoot me. I’m going to kill you!”

The day he shoved me, he whispered through a door, “You don’t understand, mom. I hear voices. They tell me to do things I don’t want to do.”

Our darkest day came a year or so after he was diagnosed with Obsessive Compulsive Disorder (OCD), and Mood Dysregation Disorder (DMDD).

Doctors had been playing with cocktails of medications that brought only a short respite of symptoms before they came back with a vengeance and crushing our hopes.

Our darkest hour came on Monday, October 27th, 2014 at 4:30pm, when a nurse called and informed me, his doctor wanted him to be admitted to be evaluated, and I was to take him RIGHT NOW.

He was there for four days.

The terrorism had stopped, but we wait…we all know it can start again.

The voices are quiet, but the demons are still there.

So, this is Justice. This is the child that brings me to my knees, more than any other child. I praise God for that and for him. He makes me strong and he makes me weak.

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” – Deuteronomy 31:6

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. – 2 Corinthians 12:9