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” ūüôā

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

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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.

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!

I Will Rejoice

My son has left, and my heart is heavy.

It’s been two days now.

I haven’t written, because I haven’t known what to say.

I still don’t.

So I will cling to my faith.

Know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

Nothing in all creation is hidden from God’s sight.¬†– Hebrews 4:18a

Seek first the kingdom of God and his righteousness, and all these things will be added to you. – Matthew 6:33

Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. РProverbs 3:5-6

Out of my distress I called on the Lord; the Lord answered me and set me free. Psalms 118:5

And I will start rejoicing…
This is the day the Lord has made;
We will rejoice and be glad in it. – Psalm 118:24

Because I know God is at work within him.
For it is God who works in you to will and to act on behalf of His good pleasure. – Philippians 2:13

My son is lost, but he will be found.
For this son of mine was dead and is alive again; he was lost and is found. – Luke 15:24

I will start rejoicing. And one day my heart won’t be quite so heavy.

Without Expectations

So, somehow in the last 24 hours, I became a parent to an adult child. I don’t even know how this is possible. Where has the time gone?

Because Tunes and Justice are so different now compared to their five year old selves, we often joke about five-year-old-Tunes and fourteen-year-old-Justice.

While fourteen-year-old-Justice is much easier to get along with, than five-year-old-Justice, I miss five-year-old-Tunes.

He was so sweet and caring. He was carefree and fun. He always had and endless supply of smiles and hugs.

But as he has grown, his anxiety has taken much of those traits away. I love my son with all my heart, and it’s so hard on me to see how his illness has stolen his childhood and has changed who he is.

This is not how I believe he was designed to be. And because I still hold onto those old expectations of him, I am often left bitter and disappointed.

He has just turned 18, and yesterday we joked about giving me my last 17 year old hugs and saying goodnight for the last time to my 17 year old.

Today we are having his party. I have spent weeks trying to figure out what to get him to make this a special occasion. I’ve asked him what he would like and I get the same response every time. I don’t know, it doesn’t matter.

But it does matter. It matters to me.

Late last night, while my husband and I were still out looking for something, I told him I wasn’t looking forward to tomorrow.

I have all these high expectations in my head for his 18th birthday and I know I’m going to be let down again.

He’s not going to be happy. He’s not going to smile and be excited to see his family. From the moment people start showing up, and he’s forced from his room he’s going to be harassing me to let him go back. Social gatherings exhaust and irritate him and he makes sure they are equally as hard on me too.

And here I am trying to make it special. I guess the only reason we are still doing it is because he’s always shared his party with his little sister who’s birthday is just four days before his. And well, eight years later, of course.

Every year, I’ve always given him the option to have separate parties, but every year he’s always wanted to share with her. His relationship with his little sister has always been a close one. And this one is probably going to be their last.

So, as we’re wandering around the store last night, really wanting to get him a bike since he has no interest in getting a car or his license, but knowing it’s not really something he wants either, I decided to not get him anything.

Well, anything for right now.

I can’t see spending so much money on something that he may not even use, just to give him something special, that he doesn’t even care about.

And then there is the high expectation of seeing a look of delight and excitement in his eyes when it is revealed, that I’m never going to get. And the disappointment sets in for me and for him.

Why put us both through that?

So I’m getting him nothing. No expectations. No disappointment. He doesn’t care anyway, right?

But I will tell him this is just for today. We don’t have to put so much pressure on this one day. We have tomorrow and even the next day. We can take our time to make this time special; to make this gift special.

I am always rushing him; expecting him to be what I consider normal.

He doesn’t get A’s and B’s, but he does still pass…barely. I pushed him to get a job at 16, but he eventually did get one at 17…and a half. I’ve taken him several times to get his drivers permit, but he just doesn’t want it…yet. But he will.

Just like he will think of that special gift from me. One day he will know and he will care, and that will be the day I celebrate with him.

We’ll get there. But this time without expectations.

Tunes

It’s a quarter till four, right now, and once again I’m awaken by the sound of my son who is getting sick in the bathroom next door.

Mind you, I’m hearing this through the sound of the running shower, that has probably been running for possibly as long as an hour, maybe longer.

Water soothes him, or at least sometimes. Obviously today is not one of those days.

And yet, he still gets accused of using his anxiety as a crutch.

My soon to be 18 year old boy, who is in his last semester of high school, is trying to be a man, is trying to suck it up, is trying to handle this on his own.

Anxiety is real. Anxiety can bring you to your knees. It is physical as well as mental and it breaks my heart to lay here, knowing how real, how painful, how paralyzing this disorder is to my son, who is just a boy and is being told, almost commanded by outside sources, to stop letting his anxiety get the best of him.

My son is NOT letting his anxiety do anything. He is held hostage nearly every night, or morning from around two a.m. to four. He is not using his anxiety as anything. He is fighting, everyday, EVERYDAY!

Now I can hear the tunes of his phone playing from the room. I can imagine my son, sitting on the cold floor, with his head between his hands, rocking back and forth quietly trying to get lost in the music, trying to shut the noise off in his mind.

He doesn’t even come to me anymore.

God please! Make this stop. He’s just a boy. He’s my boy.

Protect him. Keep him company. Bring him peace. Meet him there on that bathroom floor. May he feel your calming presence lay over him like a warm blanket.

Lord, give him your strength when he is weary. Give him understanding of who he is, in you.

He shouldn’t have to be this tough and then have others tell him how weak he is. Settle his stomach, as well as his mind.

Our Village Had a Meeting

So, Mike and I were driving Justice to his dad’s when we pulled into a Carl’s Jr joint. He asked solemnly, “What’s going on?”

“We’re meeting your dad and step mom here.”

Silence

I can imagine what is going through his head. Oh crap! Or something stronger.

He had to know this was coming.

After living with his dad, full time for the past month, it was suggested that maybe it was time for him to come back with me half time, again.

Living in a blended family is messy. And even though there are a lot of them out there, there’s not a lot information on how to do it right.

That’s the hard part. Knowing you can’t have your child growing up in a traditional family unit, but still wanting him to feel all the security and benefits, as if he had.

Blending families are hard. And they’re messy. And they’re complicated. And from what I’ve seen it in the rest of the world, seldom make it.

He was sent to his dad’s, by me, because he had another meltdown. He convinced his doctor to reduce one of his meds against my better judgment. I had told him then and there, it was fine, but if he had even something that looked like a meltdown, he wasn’t going to be allowed to stay in my house anymore. His reign of terror had ended almost a year prior, and I wasn’t about to let it come back.

We’ll, it came back and he was sent to his dad’s, much to his delight. He’s been wanting to live with his dad full time, for awhile. It was suggested he did it on purpose. It doesn’t matter. He was gone.

That was five and a half weeks ago.

His step mom and I have been talking. It’s so nice to be able to do that. I can’t handle talking to his dad. Too many hurt feelings. To many trust issues.

It’s not always easy between the two of us. We disagree on a lot of stuff. But often I feel we unofficially agree to disagree. I think we sometimes hurt each other’s feelings, but we don’t hold grudges. We let them go.

Obviously this is just my side of the story, but I think she would agree this works. I’m so grateful it does. You know, for our kids sake. We can somewhat give them a united front.

A combination of things have lead us up to this meeting. Finding out he has Pyrrole Disorder that can explain his meltdowns and has a treatment to alleviate them, is huge.

However, it was Justice’ inability to decide if he wanted to come back without changing his mind that warranted a sit down with everyone.

He had told his dad he wanted to stay. He had told his step mom he wanted to come back. He had told me he wanted to come back. Then told his doctor he wanted to stay and as soon as we got back in the truck, he told me he wanted to come back!

Yeah, he had to know this assembly was coming.

Can I tell you how nice this gathering was? It wasn’t a bashing of Justice. No intimidation. No cornering. At least I hope not.

No criticizing the other parent. No egos were bruised. No arguments, or disagreements.

We were all able to express our concerns, listen to him, and be a family or a village. Whatever it takes.

Justice is coming home. Do I think it’s going to be smooth? Ummm, no. Do I think he’s going to change and suddenly be the easy kid? Ah, no. Do I think the four of us are providing him with as much security and benefits as a traditional family? I feel we’re heading in the right direction.

I am encouraged. I have hope. I feel blessed.

Thank you Jesus for helping us blend this mess.