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 |
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.
by Band Back Together | Sep 6, 2018 | Adult Child Loss, Bipolar Disorder, Caregiver, Coping With Depression, Coping With Losing A Child, Grief, Help For Grief And Grieving, Leukemia, Loneliness, Love, Major Depressive Disorder, Mental Health, Sadness, Stress, Suicide, Uncategorized |
In June of 2017 my daughter was diagnosed with leukemia. She passed away in November. My husband and I have custody of our 11 year old granddaughter. Grieving is taking it’s toll. Last month I was admitted to the hospital for being suicidal.
I think about my daughter all the time. I spent every minute in the hospital with her for 5 months. Telling my granddaughter that her mom was dead was the worst thing I’ve ever had to do. Whenever I go outside for a smoke, I think of my daughter. Whenever I drive the car, it reminds me of the drive to the hospital.
My mind won’t stop thinking suicidal thoughts. My brain constantly hammering me with negative thoughts. I’m hopeless, sad and feel out of my body. I don’t recognize my thoughts or myself. I am so lost. The emptiness is everywhere and I don’t know what to do.
I’ve been treated for depression for years and have had suicidal thoughts the entire time. I spent 2 days in the psych ward. I slept most of the time. I attend an outpatient program and went to a new psychiatrist today. He said my bipolar diagnosis was incorrect and adjusted my medications.
by Band Back Together | Aug 29, 2018 | Addiction, Alcohol Addiction, Anger, Bipolar Disorder, Cirrhosis, Coping With Losing A Friend, Denial, Friend Loss, Grief, Help For Grief And Grieving, Hope, Loss, Love, Loving An Addict, Loving Someone With Bipolar Disorder, Stress, Trauma |
I guess I met Stef when I was thirteen or so, which would have made her twelve, but really, I felt like I’d known her forever. She was one of those people that the moment we met, it’s like we bonded instantly on some molecular level; like we were made of the very same stuff at the core. It’s rare that it happens, two people who simply know each other like that, two magnets pulling toward each other, instantly attached, but when it does, you can’t forget it.
And I didn’t.
Everyone loved Stef. She had this shine about her, something rare in a teenager, that made you want to be near her; like if you stood close enough, some of that sparkle, that inherent goodness that radiated from her would rub off on you, and for awhile you would be better for knowing her.
I am better for knowing her.
Stef was one of the first people I knew that loved me for who I was, warts and all, and even now, seventeen years later, I think she may be one of the only people who genuinely will ever love me. Maybe it’s because she understood me in a way that most people don’t. Maybe it’s because she was my first real friend. Maybe it’s because that was her gift; her shine. I don’t know.
She walked tall, confident in her shoes, while the rest of us awkward teenagers struggled to figure out who we were, Stef always knew who she was. I learned that from her.
When my boyfriend slept with my friend, she was the only one who chewed him a new asshole. In a world where I had never had a soul on my side before, Stef was always firmly there, Team Becky all the way. She would have cut a bitch for me, no questions asked, because she was my friend and she loved me. Maybe other people had families that would do that for them, but I never had that. It had always been me against the world. I learned how to be a friend from Stef, too.
She was there when I’d gotten pregnant with my first son, holding my hand when his father, too, cheated on me. Again, she was the only one who stood up for me. I never told her how much that meant to me.
Shortly after my son was born, she got pregnant, too. Excited, we planned for this baby, a boy. When her son was born, the sparkle she’d had went out and was replaced by a sadness I couldn’t touch. Always a party girl, she took it to new levels, trying to drink away her pain.
No one knew what to do.
We tried to reach her, but nothing seemed to get through. She tried rehab, three times. She was hospitalized. Tried medication. In the end, she kept returning to the bottle, drowning her sorrows in a fifth of vodka. The only friends she had left were the late-night sort, the ones who didn’t care about the Stef I loved so dearly, the ones who didn’t know my friend as she had been.
She left me a message at the end of December from a pay phone, having no phone of her own, just out rehab again. Stef sounded good, optimistic, even, offering to get together for some coffee and a playdate with her two boys and mine, sometime in the near future.
That message came too late.
I got that message two days after I buried my first real friend. One of the only people who may ever really love me.
February 10, 2008, I got a call from Stef’s mom, telling me that Stef had died the night before, in her sleep. Liver failure, cirrhosis.
Stef was 26 years old and left behind two young sons.
I’ve never been able to write about her, although I’ve tried hundreds of times. I’ve deleted thousands of words because they were simply not enough. There are no words eloquent enough, true enough, real enough to express the kind of person she was. And getting her wrong is not an option.
I loved her. I love her.
I miss her so much that my heart hurts some days. I’ll probably always feel like there’s a part of myself missing now that she’s gone. That magnet, the part of me that was connected to her, that’s still looking for that other half and it’s gone forever. I’m lucky to have found someone like that in the first place.
Sometimes, in pictures captured when I am truly happy, I can see a certain expression on my own face that is pure Stef, and it makes me smile and laugh a little, because it reminds me of the e.e. cummings poem: i carry your heart(i carry it in my heart)
This site is dedicated to you, Steffie. When we meet again, and I know we will, I can’t wait to tell you all the things I never told you when I should have. For knowing you, I am better.
May your shine always be warm, like Stef; like the evening sun.
by Band Back Together | Aug 21, 2018 | Bipolar Disorder, Fear, Jealousy, Marriage and Partnership, Marriage Problems, Sadness |
The Band, I’m in a terrible funk right now.
I’m having some kind of weird mid-life crisis, though I don’t know if being just shy of thirty counts as “mid.” Either way, my main problem is that I just want to be left the hell alone. Of course, wanting to be left alone and actually being left alone are two completely different things, and the sad truth is that I will never be left alone.
It’s not due to the bipolar depression, although I know damn well it’s a contributing factor on my worse days; it’s simply because I’m tired. I’m tired of going through the motions of my daily life, getting up early to tend to all manner of things. I’m tired of everyone in my household demanding something from me at all times, whether it’s my daughters, who want/need all of my attention since they are both so young, or my husband wanting to constantly have sex, or even the damn cat for bitching about not having food even though his food bowl is completely full. (The cat is an idiot).
I have no friends – all of them live in a different state because we moved away 2 years ago in order for my husband to pursue a new job opportunity in the northwest. We have family not too far from where we are, but we barely see them as it is, so they wouldn’t dare step in and watch the kids in order for me to get the hell away for a little while.
A few days ago, one of my friends told me to come visit her so we could go on a bender, and to be honest, I would fucking LOVE to! It would be an opportunity to get away and have some fun for once, since all of my hobbies have gone to shit since becoming a stay at home mum 5 years ago. However, even if we still lived close by, that bender would never happen because my husband, while a great guy, is insecure as fuck, and at times errs on the possessive side of things. He would be paranoid about me cheating on him even though I’ve been a million percent faithful.
Pretty much all of my time I try to reach some semblance of reprieve by burying myself in my laptop: reading the news, blogs, messaging friends or (my secret shame) reading and writing fan fiction. (Now The Band knows my horrible secret!) Sometimes I listen to music. Music is a major way for me to unwind, and the advent of Spotify has been very useful since I can listen to stuff that I’m too cheap to purchase via iTunes. My husband thinks that I have some kind of bizarre internet addiction, but that’s so far from the truth. I know this is a form of escapism.
This is my dilemma. I just want my family to back the shit off, but at the same time, it makes me feel like a terrible person. I don’t want to play with the kids. I don’t want to engage in “sexy time.” I don’t want to do the goddamn laundry or feed the goddamn cat.
I’m grumpy, I’m exhausted, and I’m just flat-out sick of everything!
by Band Back Together | Aug 20, 2016 | Anger, Anxiety, Anxiety Disorders, Bipolar Disorder, Chronic Fatigue Syndrome, Coping With Anxiety Disorders, Coping With Depression, Feelings, Generalized Anxiety Disorder Resources, Loving Someone With Bipolar Disorder, Major Depressive Disorder, Teen Sexuality |
“Teenage hormones”
“Depression”
“Chemical imbalance”
“Post Traumatic Stress Disorder”
“Postpartum Depression”
“Seasonal Affective Disorder”
“Bipolar”
“Generalized Anxiety Disorder”
Since I was 15 years old, I’ve been diagnosed with one thing after another.
It’s like a revolving door. Or a carousel of diagnoses. Like a really bad carnival ride, where you just want off, but it seems like it won’t end. Ever.
Usually I get a new label because we’ve run through the gamut of medication that is supposed to “solve” one problem, only to find that none of them work.
Or I have changed providers.
So I fill out another 500 question sheet of paper, which of course has answers that are completely dependent on what day of the week it is, what time of the day it is and whether or not I got any sleep the night before.
Then after this highly scientific deduction process, I’m given a new prescription to go with my new label and sent on my merry way.
Only to fall flat on my ass at some point (and I do mean fall, like rock-bottom), and have to start all over again.
This is why I’m a big fan of saying that medicine alone is not enough. I fully believe medicine is a hugely helpful tool. But I also think that it needs to be in conjunction with some form of therapy.
Of course, that doesn’t explain why I haven’t managed to make it to my appointments with my therapist in the last couple months…
by Band Back Together | Jun 24, 2016 | Abandonment, Bipolar Disorder, Borderline Personality Disorder, Coping With Depression, Major Depressive Disorder, Social Anxiety Disorder |
Whenever something good happens to me, I always assume that there’s a Catch. Most of the time I am absolutely correct – there’s always something.
Always.
Thanks to the wonders of artwork sites and mutual interests, what started as some back and forth communication and chit-chat about all things relating to art and nerd shit, with a fellow nerd with similar views/interests, soon developed into a friendship that has lasted a little over a year now. We grew as close as you can get to someone you have never – and will never – meet in person, though her tendency to be so open, and to share really personal, and HEAVY, stuff led me to perpetually think I was being trolled. Nevertheless, she was still my friend. We talked about so much shit via email and instant messaging, and we were “there” for one another.
Over time, she started displaying some behaviours that were a bit erratic. Like fear of abandonment, extreme depression, shit like that. I always had a far-off feeling that something wasn’t quite “right.” There was something keeping me from trusting her a full 100%, but I thought that perhaps it was my imagination. I have a tendency to be paranoid because of my own issues (I have some epic social anxiety, and I’m Bipolar II as fuck), but I shook it off because she proved time and again that she wasn’t Catfishing or trolling. Even when she was being really weird, I continued to be there for her because that’s what friends do. She’s my friend, and it would suck if I just bounced whenever she was having a shitty day. I know I would feel horrible if someone did that to me.
After a series of erratic events that spanned the winter, she decided to hospitalize herself because it was clear that there was something very wrong.
So, remember that Catch I mentioned? Yeah, it’s Borderline Personality Disorder. We shared short emails here and there while she was hospitalized, and she finished her three-month stint just last week.
I started to feel like something was up. Something wasn’t right, and I couldn’t place it. I’m extremely perceptive, so I asked point-blank via email if there was anything wrong.
Here’s where The Catch comes back into play because, well …it’s a goddamn catch.
You know how people with BPD will idealize people, and shit like that? Well, she admitted that she had become obsessed with me. Like, to a creepy extent. To the extent where she and her wife decided that one of the best options is for her to limit contact with me as she continues to get sorted out. She told me all of this because she wanted to be 100% honest with me. I knew something was up, and I would have kept asking until she told me because …Spidey-Sense.
Her treatment has helped her a LOT; this is something that I can feel, and she is a million percent sincere in her apology. She has stated that she no longer thinks of me as “some ÜBER-human” (her words), and will understand if I decide to cut off all contact with her, since, apparently, friendships with BPD-folks are basically impossible to maintain.
In light of all of it all, I have blocked her access to my Twitter stream and I switched her Facebook access to “Restricted.” The less she knows about what I’m up to, the better, right? But I don’t know what to do. I don’t want to block her out. I don’t want to lose her. I absolutely adore her, and I want her in my life, but again, every piece of literature that I have read, as well as what her doctors say is that this friendship is doomed. Plus, you know, that whole idealization thing in the first place (which has left me with a lot of questions that I fully intend to ask her). I know that’s part of the disorder, but I’m still trying to process it.
And now I sit, at a proverbial crossroads because there’s always a goddamn catch.
