I Just Wish Someone Understood…

by Band Back Together | Oct 19, 2018 | Anger, Anxiety, Anxiety Disorders, Attention-Deficit Hyperactivity Disorder, Autism, Bipolar Disorder, Bullying, Child Protective Services, Childhood Bullying, Coping With Bullying, Depression, Family, Feelings, Guilt, Impulse Control Disorders, Loneliness, Major Depressive Disorder, Military Deployment And Family, Obsessive-Compulsive Disorder, Oppositional Defiant Disorder, Pediatric Caregiver, Sadness, Uncategorized | 2 comments

A wise woman told me to write up my story and tell the hell out of it.  So, here I am.

Sometimes, I feel like I have the only kid like mine. My son was diagnosed between 3 and 4. He is one of 3 I have, with special needs. For the time being, I’m focusing on my oldest.

We knew something was not right with him. He threw an 80 lb. mattress across the room at me. How does a 3 year old do that? He never slept. He would have meltdowns and throw things at me. I have gotten black eyes from everything from a book to an army boot to the back of the head.

Thankfully, I had a wonderful doctor tell me how to deal with the meltdowns and those came less and less often. However, he would wander. We had two incredibly scary events where he wandered off when he was 5, but he had angels and off duty police officers watching out for him.

When we got the Autism diagnosis, I knew nothing about Autism. Most people equate it to the movie Rain Man. I had never seen the movie so I had no clue. All I knew was Doug Flutie, an NFL football player, had a cereal that’s proceeds went to autism awareness. The only reason I knew that is because I saw the commercial once while my husband was watching a game. That’s all I knew.  Nothing else.

So, the journey was rocky and hard.  The first year my husband was stationed in Korea, so he was not around to learn what I did.

I relied on “friends” I thought that I had to help. Instead, I got investigated by CPS (child protective services) for making everything up. The only thing that was founded was that I was stressed. (Gee no idea why???)

My son’s first year in school was horrible. Open classroom and he would have meltdowns. They did not want to deal with him, so 5 out of 5 days he went to school, he was sent home early. I had no idea what I was supposed to be doing or how the school should have been handling him.

Thankfully, the school he was moved to had a wonderful Spec Ed teacher that knew what she was doing, to this day, I will still kiss the ground that she walks on.

He improved and stayed in school. Had messy moods and lack of sleeping so we had to join the medicine bus. So many doctors and specialists, “you should do this” and “don’t do that and this and that.”

The kid is a loving, sweet amazing kid. He has a hard time showing that. He has many co-morbidities along with his autism. ADHD, ODD, Anxiety, depression, hypermobility, OCD, etc.

In our journey with him, we realized he wasn’t like most kids with autism. So many can use an iPad and it’s nothing. A phone and no problem. With my son, he can not tell the difference between reality and what’s on the iPad or phone. We tried. We tried so many times, so he could be like his friends or brothers. But it ultimately turned out so, so, so, so bad.

When he was 11 a child that bullied him at school told him that triple x rated stuff on the internet was bad and if you looked at it you were super special because not everyone’s computer can look at it. Ever since that day, my son has been fixated on it. At 11 he had no idea what it was, just that it was special and not everyone could see it. As he grew into puberty it got worse and worse. I still don’t think he knows exactly what its supposed to mean to a person, because his thinking age is around 10, but he knows its bad, he’s told his therapist it’s bad. He’s tried to look at it on the internet at school.

We had everything on our cable blocked so that he could not watch it or order it and somehow he got around it and we had a $900 bill.  (I’m still drinking coffee to cope with that one)

Now he’s in a dark, dark place. He’s obsessed with death. He writes and writes and writes about death scenes. Then he tears them up. He talked to his therapist, but he sees no problem. We can not even let this child watch cop TV shows it’s that bad. Nothing to do with magic, or death.

My husband and I have been watching his behavior as of the last 2-3 months and I’m not liking what I see. Neither does my husband.

His moods are very erratic. One minute he’s happy, the next he’s angry and ready to fight. Then he’s happy. (Note: he has not touched a soul, just has gotten angry with words) These mood changes make me think he’s bipolar. We were warned that he probably was a few years ago. We knew it was coming.

Now we’re questioning the doctor, because my husband and I are so completely and mentally drained from dealing with his moods and trying to keep his brothers from upsetting him. The doctor is trying to tell us that he’s making it all up and that we just have to deal with it. My first thought, no lie, was, “The fuck you mean deal with it? I’ve BEEN living with it! We came to you for help on how to KEEP dealing with it, asshole!”  I, of course, did not say that, because I was too tired.

This kid has been in-patient 7, lost count after that, times for being bullied and being suicidal. I’m scared to death something is going to set him off. Granted all sharp instruments are kept under lock and key. We continue to try and understand what is going on, but our son can not tell us because he does not remember the mood swings.

His doctor said, because he does not feel bad for being angry and mean, he is not bipolar. DUDE, he’s autistic, he’s not going to feel bad.

I had 2 major surgeries and he bumped what I had surgery on, I started crying and he didn’t give two craps. That does not mean he’s not bipolar!

It’s hard to keep him busy. He gets bored with puzzles and crosswords and TV, because we have seriously toned down everything that he can watch. I’m just at a loss on where I should go from here. There’s probably a lot I left out of his story, I’m sorry for that.

Here’s another twist on his story. He legit thinks he’s from another dimension. He thinks he is a female from another dimension, that he will leave to find when he is 18 years old. There are artifacts all over the world that he has to collect in order to remain safe in this other dimension. He thinks that the here and now is just temporary. Because of his beliefs with this, he can not watch or read anything that involves fantasy. Because he can not and will not be able to tell the difference between what is real and what is not.

His therapist and I had a long talk today about it. I had to stop from bursting into tears, because I have never heard of another child like mine. I explained that to him and asked what do I do. He said I do what I’m doing… Be mom.

It did not help when he said that in the 13 years that he had been doing what he does, he had never met another kid like my son.

Sometimes, being a mom is rough as hell when it feels like no matter what you do, it’s out of control. You know all those books you read before you have kids?  I never read any chapters on Autism or special needs and I sure as hell never read any on how to deal with this kind of life for your child.

I guess I should add that I am dealing with my own depression and anxiety right now. My anxiety is off the charts and my shrink threw me into counseling. Didn’t even ask just threw me in. I also have a chronic illness and it flares up in the form of pain when I’m extremely stressed out, the last 3 months I’ve gotten little relief.

It’s sad to say at this point, I’ll deal with me as it comes. I just want my son to be okay. I know I need to worry about me, too. If he is okay, then I can be okay.

Basically, I’m writing this because I just need to know I’m not alone. I’m so tired. My gut instinct with this kid is never wrong. My gut says he needs help with this anger thing and his doctor is being stupid.