Monday, July 5, 2010

Meet Erika


I wanted to share some priceless feedback I received in my post Security Please. An incredible 14 year old girl named Erika, who is living with a mood disorder called Bipolar Disorder, shared her experience of what it’s like to live with this illness. She was able to express what mania, depression and rages feels like from her perspective. She also gives great insight as to what has helped her and what doesn’t. I think you’ll be impressed with some of her advice! If you have a young child who is living with a mood disorder and isn’t able to express themselves yet, I highly recommend you take the time to read through all of her posts (listed below), not only will you be impressed with this amazing girl, but you’ll be enlightened by the valuable perspective that only a child living with this disorder can give. Thank you Erika for opening up to us and allowing me to repost your comments, you are a very special girl!


Posts From Erika:
Erika June 28, 2010 11:35 AM

I have commented here once before on your post 29 days and, if you don't mind, I would like to again. A teen with mental illness, not the parent of.

We are going through something similar with my medications. After a period where I wasn't experiencing psychosis or manic and mixed episodes, we decided to try lowering my Serequel, with the plan to eventually completely go off it. At first, though I was having a slight increase in impulses, I was able to manage. As we continued lowering it, however, the psychosis came back, as did my low impulse control. I also experienced a bit of mania and irritability.

I'm sorry you had to go through that. I can put my place in your sons shoes, remembering what it was like to be sick at his age (I'm fourteen now). When you're manic, close to nothing can bring you down, even the presence, however scary or embarrassing, of security. Your energy never ends, you have all these ideas, and impulses without the control. You're on a dangerous, scary thrill, and if anything (anybody) is in your way, you'll knock it down. You can do anything, and you're strong as you are brave. The anger of those around you only fuels it, putting a fight in you. You look for that fight, it continues the thrill, and, in your mind, there's doubt at who's going to win: you. A wild smile creeps across your face, and you laugh like you have all the control, when in reality you have none.

But soon it gets scary. You're moving so fast and you can't slow down. The energy keeps going even when it comes time to sleep. The impulses make you hurt people you care about, and you cannot stop. You're doing risk things that could get you hurt; you very well might hurt. You feel out of control, scared, and you just want to STOP. The disease has control, though, an it will let you go only when its ready, no matter what your plans are. No matter how you WANT to feel.

Or, at least, that's my experience with mania. It can feel good; but it causes disaster, almost always. I hope your son knows he's not alone, and that other kids understand. If not, maybe you can show him this comment. I know how alone I felt at his age, and still do. Hope things improve as you wean the medication back into his system. Stability, even if it doesn't last forever, can happen.


Mama Bear said...
Erika, I don’t know if you'll read this reply, but thank you so much for your post. You’re such an articulate girl, you gave me so much insight in your descriptions in helping me better understand what my son is going through and I’m thankful for that.

I did share your letter with my son and it made him smile. He said that it made him feel good to know that he wasn’t the only one to feel like this. When I asked him if he could relate to anything you said, he replied “Everything!” This is very helpful for us both since we are still trying to determine what my son has specifically, maybe this can be useful for his doctors.

We went through a lot more extreme behaviors yesterday and your descriptions fit my son to a “T”. Even your description of the fight being a thrill applies to my son, he even told me that yesterday in the middle of a fight, that it has fun for him, but at the end of all his impulsive, destructive behavior, he was left with depression, the fun was over and he felt worthless. Your post pretty much described our entire episode we went through, it has me thinking that what we saw yesterday was mania.

If you happen to read this, maybe you can help me. When my son is going through all this, what can we, as his parents, do to help him, while keeping the rest of the family safe?

Also, my son told me that when he is put into a closed room timeout, it makes his anger worse, and his behavior intensifies. What has worked for you to calm down, or do we just have to wait until his body returns back to normal? Thank you again Erika!


Erika said... 
Thank you so much that reply. It meant a lot to me, truly, to know that it meant something. I nearly cried just reading your words (in a good way!).

It put a smile on MY face to know that it made him smile, and gave him some sense that he's not the only one. He seems like an amazing kid, and I only wish I had the ability to express my feelings at that age as he does now. Even though it's really difficult and painful, that ability to know when he needs help and to be able to say what he's going through will be very helpful, especially as he becomes a teen. (WARNING: hormones will be poison to this illness. It's impossible to be prepared; but you need to be aware of that. We weren't.)

What your son went through definitely sounds like mania. Especially the fact he said "Everything" when he read my experience. Of course, I'm no doctor; but I can tell you that, while manic, I have used some of your son's exact words. Done the exact same things. Especially the fighting being fun. As I said, it's a thrill that keeps building and firing. We try to provoke the other person, not to be mean but to fuel the fire. We really don't want to upset you; but our brain is on a high, and like addicts, we need more. It's never enough. The energy doesn't go away or lessen, and you fuel it both to make it last longer and, as it gets scarier, to try to satisfy it. You can never satisfy mania, though. The impulses came coming, thoughts one after another, ideas popping up all over, and you need to do SOMETHING. Run, fight, do dangerous things (which change with age. I've abused substances before, regrettably). None of it scares you, and none of it ever completely wears it out.

I understand the post-Manic depression and guilt. Depression in general, really. There are times where I've come close to suicide, a problem that gets worse as I get older, and just generally feel low. I can't really see much good myself, and just keep thinking how I just keep messing up, hurting the people I love, and making mistakes. Being told how much I'm loved rarely helps. It feels so fake. I'm just a burden that makes everybody's lives more difficult and painful. It would have been better if I was just never born, or if my heart suddenly stops. Or, a more painful death. I deserve that for what I do to my friends and family. Nothing can seem to comfort me. I just feel so incredibly sad, and I have no idea why. I cry; I scream; I think of killing myself. When I was younger, I would go from hitting and scratching and hurting others and turn it to myself. I've come out of depressions with bruises and scratches, and as I got older and more aware, cuts. They would be there, right alongside the injuries from the recklessness of mania and rages.

I'm not sure if what works for me will work for your son; but, of course, I will try to help.

First, I have to say that the locked room idea never worked for me, unless I specifically went to my room to get away from people. Otherwise, I would feel like a caged animal and the anger that was already spilling would just light on fore. Writing this now, I can feel the rage going through my veins. It's intense. I scream as if somebody is murdering me, curse every swear I could think of, insult anything in sight (person, item, bug, animal, anything). It didn't matter who or what, I was angry and goddammit you were going to know. My room became the victim of a human tornado. Things were broken, thrown, knocked over, ripped apart, and unplugged. Sometimes I would kick the cat. The anger just builds inside me and I cannot think of anything else; I will not think of anything else. I hate you. I hate me. I hate this whole world. I wish you would just die or go to H**L. I wish I had fire so I could burn this entire house down, or at least myself. I would also get very self-destructive when alone. Scratching myself, banging my head, and slapping myself. Using pointy toys to push against my skin. All the while kicking and banging at the door as if my life depended on it. IIn other words, I was extremely unsafe when I was locked and alone. Think about it, would you want to be left alone with no way out when you were out of control, scared of yourself, and self-injurious? In some ways I want to be alone during a rage, to protect others; but sometimes being alone is simply too dangerous.

If nothing described how a rage truly feels, I think the fact I would scream "I CANNOT STOP! I CANNOT STOP!" *do something to somebody. "I'M SORRY, I'm SO SORRY (while continuing to break things.) I WISH I COULD STOP! HELP!" It makes me want to cry just hearing that. How much pain I was in when I was really unstable. A mental illness, no matter what the label, just makes the world seem so terrifying.

Or, as I put it one of my poems, titled "The Forest Between You and I":

There is a forest in between you and I, 
that not even the best eyes can catch a glimpse of, 
no matter how tiny or microscopic the glance. 
But though it cannot be seen with a human's vision, 
my mind can feel every second of its expierence, 
tied down for the ride and put through the 
chaos of its parasitic existence. 

It began to grow not long after I was born, 
becoming stronger with every tear dried out, 
and tantrum I forced inside rather than scream through. 
Until I could feel as its branches dug deep into my nerves, 
dragging me by the hair until I was beaten and bruised, 
helpless to stop as the forest grew all around me, 
turning the world into a colorless place where happiness died, 
and I thought of death all the time. 

The world seemed to get foreign and frightening then, 
me just an alien not meant to even be born. 
Watching as all my friends danced through each day, 
handling things as they came and forgetting on the way. 
They made it seem as if it was an effortless task; 
one that I could never come close to achieving, 
even though I tried harder than the spoiled brat they claimed I was. 

No matter how small something supposedly was, 
when it came up to bite me I shrieked and tried running away; 
but the forest's branches would tie me up in a twisted, tortured knot, 
refusing to let go no matter how hard I fought back and squirmed. 
Until the pain was so strong I could think of nothing else, 
forgetting about the world beyond the Hell of the forest, 
and scratching up my arm as if life depended on it – because in that 
moment, it does.

(If you want the whole poem, give me your e-mail. It's quite long).


Erika said...
As for how to handle a rage, I would first and foremost suggest asking your son. He truly knows how every word and action makes you feel. You brought up the issue that being alone, locked in his room, makes things worse. As I stated, for me it truly depends on the rage. Sometimes I don't want to be near anyone I could hurt; but being locked up like that makes it worse. Really, it makes me feel like a criminal that just needs to be locked away and never visited or loved. I know it may sound disturbing to you as a parent, and I apologize; but it is how I feel. Because of that, maybe you could give your son a choice. If he needs to be alone and kept from everyone, you will lock him in his room; but if he feels it will make things worse, you won't do it. As it can be really hard (an understatement) to communicate that verbally to you in the midst of a rage, maybe you can develop signals as to what he needs or he could tell you what behaviors and words mean what. It might be really good for him to think about what he needs when does X, Y or Z. It may take him awhile and a lot of trying; but it helped me.

Also, giving him the choice to any aspect in his treatment, from dealing with rages to medication, makes him feel a bit more control of his life. Obviously, you can't give him complete control; but you listening to him even will make him feel heard.

Also, even if you already know this it needs to be repeated. Rages are not rational. Logic and reasoning rarely work. A lot of the time, the rage is just as much of a energy thrill as mania. All the adrenaline, the anger, the energy. Rages can be just scary, angry, and out of control; but if you ask your son, you may find that the rage sometimes can be a high for them. Knowing that, you need to know not fuel it.

When he likes that fight, either in rage or mania, do not fight with him. I know it is really hard, as I remember specifically provoking my parents. It may make him angrier at first; but without fuel it may actually die down a bit. Don't give him the silent treatment or such, just calmly (easier said than done, I know) tell him that you aren't going to fight with him and fuel this. Maybe add that you love him, are not angry at him (even if you are, that can be discussed in a calmer state of mind), and because of that you cannot enable this rage. Keep with it, too. He needs to see you are serious.

That goes for a lot of things. Unless there is a safety issue, which I will touch on in a minute, a strong reaction can be a bad thing. You may not always be able to do it, and that is 100% understandable; but the rise from you ina lot of ways fuel it. If he is kicking or punching the walls, trying saying that "That looks like it hurts, and I really don't want to see you get hurt or have to go the ER for a broken bone". It may seem impossible, and sometimes it will be; but it's worth a try.

As for his siblings, while I have none, they need to develop some sort of safety plan. They need a place where they can go in the house, lock the door, and have things ready to try to distract themselves, as hard as that may be. A radio with a station they like, coloring kits, Lego, etc. Maybe a little box with messages from you and your mood disorder son might help a bit. Simple things like, "I love you", "I'm sorry", "I don't meant to hurt you", "I'll be with you in a minute", etc. While I don't have brothers and sisters, I've been on the receiving end of mental illness, as well. My "safe haven" didn't really make me less scared; but it helped, a bit. They need to know to go there when he even starts to get angry, just in case. They need to be validated. Let them know it's normal to be scared, and it's OK to be angry with their brother. You know it's hard on them. Let them know they can share those feelings with you.

In the case of a less drastic situation, such as when he's hitting them impulsively and such, it really does depend. Don't use time outs, as they usually just trigger rage. Just as you shouldn't lecture or yell. Once again, you can discuss what he's doing when he's in a better state. The focus is on stopping it. While it may not work all the time, he needs to find a way to redirect those impulses. For me, that has been ripping paper, breaking ice, yelling and attacking a pillow/stuffed animal, building something (such as a lego creation) just to destroy it, kicking something that won't break (determine ahead of time). It doesn't completely satisfy the impulse, it helps a little. Basically, you need to help find something that satisfies the impulse. Otherwise,calmly warn him, tell him you will not tolerate him hurting his siblings. It's a tough situation that has no solid or completely effective answer. Sometimes being offered to do something else, with a parent or such, helps.

You can also use the idea of using other things to let out the impulse with rages. Keep a cardboard box of things for him to do when he's in a rage. Paper to rip up; legos to destroy; pillows to attack; crayons and paper to scribble anger, words, and pictures. The last one there helps me a lot. If I draw or write out what I feel it helps me get through it, even if it doesn't stop it.

After rages, you need to firmly state that you forgive him, understand that he was really anger and out of control, how scared he must of been feeling that way, and you will love him no matter what he does. Remind him of his good traits and all the good things he's done. Volunteer worked helped served as a reminder that I can do SOMETHING good for somebody/some animal. He may not believe you; but he'll remember you said it later. Hug him. Don't tell him not to do it again, as he can't keep that promise. Then get your heads together and help him think of things that may help him next time. I know that this made me feel as if I was making a little progress. It will take a long time - or, at least it did for me - for him to find specific things that help him. It's more trial and error than the medication process! Also, maybe after everybody has gotten their composer back, ice cream never hurt the mood. It always put a smile, even if it was tiny, back to my face.

As for your question, for me, I usually need to wait until my body returns to normal. There are things, however - such as those that I listed above - that help me get through it with minimal damage. They help me regulate my emotions a bit better, or at least survive their wave until it passes. I usually sleep after that, exhausted from the rage, which further calms me down. My personal goal is not to completely make the symptoms go way (though that would be nice, too!); but to learn to survive and cope through them without becoming a danger to myself or those around me. I don't always succeed; but it's a much more realistic goal for me.

Hope your son is doing a bit better, or at least that you're surviving through the day. I really hope I could help a little, and if ever needs to be reminded that he's not the only one, you can show him my comments. He's a really strong person to survive all of this. Certainly, he needs to be reminded of that. Most of the kids at his school, or people in general, would give up after one day in his brain.

With Love, Erika


Erika said...
I really appreciate you taking the time to listen. It makes me smile that I may be helping you and your son, your family, out in some way. Feel free to re post any part of what I've said. It's absolutely fine with me. Thank you for the compliments, too.

Signals have really been useful for me. In that moment when everything is just raging out of control, I can't say what I'm thinking inside. It's hard to put words to the feelings, even if it's just stringing together thoughts. A lot of the time, those signals are all I can manage. I've used hands (two fingers out in a clenched fist means out of room; 3 means need to be alone; one hand spread out with only one finger not outstretched means I want to hurt others; full hand out stretched means I want to hurt myself; and both hands spread out out means I want both. Yours may need to be a bit less complicated, though). It can even be something like having two things (toys, boxes, etc) taped to two separate sides of the wall, and hitting/kicking each means something different. We've used that, too. You have to get creative with it. In general, though, kicking or doing something with my hands is a lot easier to get out in that rage then complete sentences.

Mania is like cranking up a kid and they can't stop until all the energies spent. If you think of your experiences of when you had any amount of energy but nothing to do, you can imagine how restless and impulsive he gets. Except his energy can't be worn out or spent like yours, so it just keeps going, and nothing can relieve it.

Thank you about your words on the depression. While I can't see it as so terrible with myself (a piece of being human), it does make me feel nauseated at times when I think of little kids that can't make themselves happy, like I couldn't. Depression is an emotional parasite. It drains its host and grows from your weakness. When your son feels that way, it's really important to validate and try to understand him. Think back to the most despair you've ever felt, such as the loss of a family member, and try to imagine feeling that all the time, with no reason at all. With people reminding you how lucky you are (food, shelter, money, loving family), which just makes you feel guilty, selfish, and worthless.

I'm glad that you'll be talking with his therapist about alternatives, because it really does make it work. Maybe you could ask input from your son what he thinks would work best. As I've said, he knows more about his feelings that any of us.

I know it's hard, and would always hate how my mom would beat herself up over losing it. I couldn't see it then, though I did feel really terrible for making it upset, she was doing the best she could. He will most likely realize that one day. Though, not blaming yourself seems harder than staying calm. Just know that I don't blame my mom for my mental illness. Not in the least. It's good, though, that I could serve as a reminder what can just make things spiral. It's important to remember that the reaction meant to help or discipline don't help much at all just serve as a lit match to the fire.

Volunteering has done so much for me. Whenever I walk away after an animal has purred or wagged its tail, or left a human smiling (especially when I was volunteer at nursing homes), I feel so warm. It makes me feel like I did something that meant something to somebody, which meant that *I* could be worth something! It isn't a fix; but helps in more ways than one.

You have no idea how happy I am I could help your son with my words. That's all I want to do in life: help people, in big ways and small. I know, for me, when I met somebody with the same symptoms (on a psych ward), it gave me sort of a relieved buzz. I'll be sure to comment more on his experiences, because all anybody wants is to be understood.

Once again, I'm glad I could help and enjoyed conversing as well.

Thank you for your words. They truly mean a lot to me. I wish your son success and health, as well. He deserves it.

With Love, Erika

Update: Erika has now created her own blog, you can check it out at:
http://voicebeneathyournose.blogspot.com/

23 comments:

  1. This is pretty much exactly what my son describes. My son now loves the depakote he now takes. He can see how much it helps avoid these incredible highs and lows and he says he feels more in control of himself now than he ever has. Interesting. Thanks for sharing, Erika and Mama Bear.

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  2. For my son, it is Abilify. Stability is priceless, for us, but mostly for them.

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  3. Thank you all so much. This means more than I could describe, to both have my words be deemed worth of somebody wanting to share and that it helps someone. Thank you, everyone.

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  4. Oh Erika - you HAVE NO IDEA just HOW MUCH you have helped me and hopefully, soon, my son. I can not wait to read this to him. he is 9 and so immature and can not express his feelings. I still do not know if he really "gets" that he has an illness-- to him, I am quite sure he just thinks he's a "bad" kid. My husband and I fight that with him-- constantly reassuring him that we love him and that he is GOOD, that his illness makes him "act" in bad ways. But this stupid illness does look like bad behavior -and I know he can not process how one type is different than another. He always acts surprised and will whisper to me so innocently "that kid just hit his sister, can you believe that?" and I just look at him - I would never say it, but my eyes get wide and all I can think is, oh honey, you do that every day -- hit your sister, brother, me, dad. He does not see them as the same -- for him there is no control as you said. He looks at those people and gets that they *probably* made a mindful decision to hit their sibling. What he does, he is ot aware of on a surface level. Oh, this was long, sorry!. Anyway -- keep posting, writing those poems and KNOW that you are really like a gas mask for a lot of us (odd analogy) -- I am breathing so much better, all of a sudden, and feel like I can handle my son a little better because of your thoughts, and stories. THANK YOU!

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  5. Mama Bear- I would love to find Erika. Does she have a blog? She is amazing in her writing. I cannot believe she is only 14. My daughter will be 14 in August and she cannot express herself like Erika. It was so helpful to read her descriptions of how she felt. I would love her to either talk to Kenzie via internet or my blog or read my blog and tell me what she thinks. We too do not have a clear diagnosis of what Kenzie has. She does have ADHD and anxiety for sure but her other symptoms look like bipolar and even asbergers at times. She is doing much better now because we are handling her different. See my post on the Nurtured Heart Approach. It is a lot like what Erika describes on how to handle the rages. We still have outbursts but instead of us fueling them like Erika talks about we have learned to walk away and ignore after we say "reset" which means that as soon as she calms down and starts over we will engage with her. It usually takes her a little bit but instead of the rage spiraling out of control to bigger and more rage it starts spiraling downward and eventually stops-way less! There is a lot more to the approach than this. I want Erika to know that she is an amazing gal to be able to express herself that way-so honest, forthright, and helpful beyond words. Please let her know this. Mama Bear, I am so glad that I found you. I will continue to follow your blog. But I have a question: So I do not have to go back and read it all-what are the best posts for me to read to understand where you are at and catch up.

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  6. Hi Amy,
    I'm glad you found my blog and got to read Erika's posts. I know that Erika visits this site, so I will leave it up to her if she wants to get in contact. I'm sure she will read your post. It would be so great if the girls could get in touch! If you are comfortable, maybe you could leave an email for her to contact you with. You could even make a separate email account for just this case to avoid giving out your personal address.

    As for the best posts to catch up with our story, you can see a list of posts under "My Important Posts" on the right side near the top of this blog. Here I have pulled out all the posts that sum up our story as well as a few that were very important to me.

    I look forward to checking out your blog!

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  7. Erika,

    I'm new to this community. I found this blog through the MDjunction "Parents of BP Children" group.

    If you check back here, I just wanted to thank you so much for your posts. Your description of what you go through during mania seems to be almost exactly what my (almost) 9 year old daughter is going through. (She's been going through this type of mania for at least 3 years.)

    It's so difficult to find the right balance. My daughter has twin 7 year old brothers and frequently during mania she will lash out at them. I've worked hard to control my own anger and frustration when dealing with my daughter during her manic episodes. But when I see that she is hurting or about to hurt one of her brothers, that's when I lose it. Sometimes the fire catches so quickly, I have to run as fast as I can to restrain her. And if she's just hurt one of the boys, my Zen-like calm vanishes.

    I don't want to add fuel to the fire. And clearly engaging in the fight does just that. But in those intense, dangerous moments, I don't know what the alternative is to picking her up, carrying her to her room, closing her door and making sure she doesn't come out until the rage has passed.

    I would love for my daughter to read your posts. My wife is scared to let my daughter know that we suspect she has BP.

    (A little history: 2 years ago we went to several mental health professionals because we suspected she might have BP. Because she was doing so well in school and acting out almost exclusively at home we were told her problems were strictly behavioral. Two years later, many behavioral problems have been improved. However, the continuing frequent manic uncontrolled rages, the incidents of pathological separation anxiety, the hysterical out of control reactions to the most minor of problems has convinced us to seek out a medical approach. The first psychiatrist thought our daughter just had severe anxiety and prescribed Zoloft. Within 2 weeks, our daughters manic episodes were off the charts and I stopped the Zoloft. The doctor has agreed to try mood stabilizers when we see him next week.)

    Anyway, my wife is not ready to mention the word BP to our daughter yet -- not out of shame -- she's just afraid that our daughter will freak out if she learns too much about BP.

    I assume that the dr will have a reasonable, compassionate description of what BP is.

    But do you remember how old you were when your condition was described to you? Was it scary? Was it a relief to finally give a name to this thing that made you feel so out of control?

    Again, I just want to thank you so much for your post. It was so articulate and helpful, and this may sound odd, but also beautiful. I was moved, educated, and inspired. You, in a word, ROCK.

    Best,

    Edrex

    ps: Mama Bear, thanks so much for posting Erika's stuff.

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  8. Hello Edrex,

    When I was younger, trying to survive the daily mess in my head, I was told so many things. At school, I was lazy, a brat, spoiled, a sore loser. The teachers and faculty had no idea about mental illness; they just saw everything as behavioral. I got in trouble a lot, and was embarrassed and ashamed. So many kids thought of me as a freak because of my extremely high anxiety, hour(s) long meltdowns, sadness turned into uncontrollable energy - all of that. Then teachers were yelling at me and saying I was lazy in front of other kids. My self-esteem just went low. When you add in all the behaviors - the rages, anger, lashing out - and all the trouble I got into, I thought I was a bad kid. That I would be better off dead or gone, because I couldn't seem to stop and everyone told me I could. I once planned to runaway; but went back on it last minute.

    Bipolar was not my first diagnosis. Anxiety disorders, ADHD, unipolar depression, and others. To be quite honest, being given the diagnosis was like a directions guide, explaining everything about my life thus far. While I did have issues feeling that I sick or different, the relief was great. Somebody was telling me I wasn't bad; it wasn't my fault. I still had self-esteem issues for when I hurt someone or worried them; but it wasn't so bad anymore. I really wasn't just spoiled/bratty/sore loser!

    The one thing that remained, however, was hoe lonely and different I felt, feelings that were there with or without diagnosis. In all my classes, nobody else had "head problems". I felt like I was the only one in the world, and I used to obsessively look at maps and point to where I was, and ask if I was the only one here that felt like me. Then I point to other places, "How about there?" Nobody could assurance me. I just wanted to know somebody understood me. That I wasn't the only different one. I didn't get that chance until I was in crisis and admitted to the hospital.

    It is your choice to show her or not; but please show your wife this. Your daughter has been through so much, and is strong to survive it. Stronger than most kids her age. I don't know her personally; but I know at that age I felt it was unfair I had to try harder, and that I was the only who did. You don't have to tell her she's Bipolar yet if it scares and worries you that much. If I used that word, copy my posts into a word file and take it out; however, everyone just wants to be understood.

    I hope your daughter is feeling OK today.

    With Love,
    Erika

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  9. CORRECTION:

    hoe lonely and different I felt, feelings that were there with or without diagnosis. In all my classes

    *how lonely and different I felt, feelings that were there with or without diagnosis. In all my classes

    I also need to respond to you about how you say it's hard to stay calm and do the things I said helped me. Truly, I wish I could give you answers; but I'm still trying to figure out how to stay calm in stress, so I will let you know if I figure it out. Just please remember that she will understand, and even though she may wish you did something different, I cannot see her holding it against you. I love my mom, and I know she does the best she can (my dad is absent; I love him too.)

    With Love,
    Erika

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  10. CORRECTION:

    hoe lonely and different I felt, feelings that were there with or without diagnosis. In all my classes

    *how lonely and different I felt, feelings that were there with or without diagnosis. In all my classes

    I also need to respond to you about how you say it's hard to stay calm and do the things I said helped me. Truly, I wish I could give you answers; but I'm still trying to figure out how to stay calm in stress, so I will let you know if I figure it out. Just please remember that she will understand, and even though she may wish you did something different, I cannot see her holding it against you. I love my mom, and I know she does the best she can (my dad is absent; I love him too.)

    With Love,
    Erika

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  11. Well, this seems to be the Ask Erika place, so if you happen to catch this, I would love to hear your thoughts on hospitals and residential treatment centers. Maybe this is too personal to ask-- skip if so. Were you ever placed in either? If you don't want to comment- I understand. You may NOT have ever been in either. Perhaps just tell us what you think about them... we are so close with our 9 year old son... short story is he's resistant to meds and becoming more dangerous when in a rage and generally more irritable and beligerent. I want to try and get him in a healthier place before adolescence and teen years kick in.
    Thanks!
    Heather

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  12. Hi Heather,

    I have never been placed in a residential treatment facility; however, I have been inpatient in a hospital more than once. The most urgent time I was admitted, I was in such a terrible place. Constantly irritable, raging, severely psychotic, depressed, impulsive, sped up, and severely depressed. Basically, as long as it is, this poem sums it up:

    "Death has become a comforting thought

    and welcome alternative to this life that I lead.

    It promises much, such as numbness and lack of awareness,

    while asking for nothing back from me.

    What a warming idea for this heart in my chest,

    left frostbitten and unable to trust after

    our world assaulted its core.


    Of course, I do try to take care

    and hold strong as the storm rages on.

    But living has become such a struggle

    that even taking a breath is hard to accomplish.

    For now I fight back against my sickened head,

    but I can't seem to stop myself from

    imagining how good a rope would feel

    wrapped around my throat.


    Everyone tells me I'm being selfish

    for thinking about the things that I do.

    They claim I should just hold on for all those

    who have loved and cared through the years.

    I nod and say I completely understand,

    but inside continue to make plans

    for when I decide it's time for me to go.

    Hopefully by then I'll be alone,

    so nobody is left to mourn my hopeless soul.


    Not that anybody would remember my days here,

    spent in suffering and worth absolutely nothing.

    Without a little doubt or single regret,

    they'd surely cross me out of their memories.

    Whispering how repulsively useless I was,

    a constant burden always crying for help.

    Yes, they'll all be screaming out with relief

    that I am finally gone.


    Go ahead and assure me how wrong I am,

    and sing your songs of false hope and love.

    Then watch how hard I'll laugh aloud,

    as you promise me things will certainly turn around.

    What a sick joke all you people are,

    saving lives of others just so they can

    continue living on in pain and agony.


    I won't be forced to suffer, that's for sure.

    Suicide is a choice and one that I made a long time ago.

    You may try many times to stop what's coming,

    but I'll find a way to succeed anyways and

    on the 8th of August, 2010 you'll

    find me sleeping with a bag tied around

    my head, unable to breath.

    Eyes closed and mouth shut for all of an eternity.


    Next to my pillow,

    there will be a note that will read,

    “I know that you love me and

    I love you, too;

    so please remember this

    has nothing to do with you.

    Life just got harder than Hell could ever be,

    so I threw in the towel and gave up, you see.

    Don't worry, though,

    now that I'm dead,

    I have surely found peace.” "

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  13. Going into the hospital felt like a huge relief. I had been so out of control of myself and mind, and now I was safe. People were constantly around me, and I couldn't hurt anybody. The structure was tight and comforting. I always knew what to expect, as the entire day was planned for me, by the hour. No surprises. No major triggers. Even though I had symptoms, I felt safer and more stable. To be honest, I was scared to come out. The hospital was safe and secure. I couldn't hurt myself or anybody.

    My returns home have varied. Sometimes symptoms return quickly, though not the degree they were pre-hospitalization. Other times it lasts. Having reduced stress and a structured home for at least the first week helps. Especially if the structure and lack of stress is slowly weaned off.

    It is scary to go in, and I have reacted with anger and resentment. In the end, however, the hospital has saved my life. After my first admission, when I left I ended up wanting to go back. It is such a safe and supportive environment.

    Of course, there are cons. Not all staff, nurses, and doctors are exactly ideal. My friend was in the same hospital as me; but she was on a different unit. One of the doctors there just drugged kids to the point they slept all day or couldn't function. One was put on high doses on three anti-psychotics, without a lot of weaning on. When she came in, she was social, talkative, and mobile. On the drugs, she could barely walk, barely talk, and had a hard time moving. These are the worst of it. You need to ask questions, and if anything seems wrong, do not tolerate it.

    Overall, as scary as the situations that led to them were, the hospitalizations were good experiences. I hope you don't need it; but if you end up admitting him, know that they can help more than outpatient care can.

    I hope I helped.

    With Love,
    Erika

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  14. Erika-- First, I need to comment on the fact that you chose August of 2010 to write about in your poem. I hope you are not feeling like you would kill yourself in the present -- you alluded to those being past feelings. Please find help if you need it - because you are very special and I feel the Mom in me wanting to jump up and grab you to keep you from falling further.

    As we all keep saying -- you are really amazing. You have incredible insight and more so, can relay in such a way that we can truly understand what you have been through - and have insight to possibly what our kids are going through -- which for me is such a blessing. My son has a wall up - and we are not allowed in. He rages, fights, screams, and then is fine... but he NEVER tells us how he feels, what we could do to help. We feel hopeless as parents, and having you "translate" is awesome. Thanks for the info! Heather

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  15. No, I am no longer feeling that intensely. Unfortunately, that was not the last version of the poem, it is just the one I found easiest. The last edit before I went in the hospital, involved January 9th, 2010 (the day after my Birthday) or "whenever my heart ran short". In other words, I really was a ticking time time bomb. I think that is the closest I came to actually ending everything. As I slip into depression again (http://voicebeneathyournose.blogspot.com/2010/07/depressive-night-my-thoughts-in-haiku.html), I remember that time, and want to just start crying. I never want to get there again. Thank you so much for your words, they mean a lot.

    I'm so glad I could help, and that I could be the translator for this twisted language. I know writing is my gift, and I am glad to be able to use it. Thank you for giving me the opportunity, and I hope your son is OK today.

    Erika

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  16. I have meant to comment sooner, but just did another read threw. Erika, thank you for sharing. THANK YOU SO VERY MUCH!!! I want to tell you how beautiful you are inside for sharing all this with us on the out side. It's extreamly helpful. Please don't ever stop writing!
    Thank you My son has 2 brains for sharing.
    jessie

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  17. Erika,

    I hope you still visit this post because I have to say you are an amazing child. Like many others I can not say how inspiring, and comforting your story has been to my family. I have a seven year old son, and to say the least it has been a learning experience for my entire family. Thankfully he is the only child at home because I don't think mentally I could handle anything more at this point in time. At least not until I read your posts tonight. Your story has given me the strength I need to continue this journey when I was ready to give up. Nothing we have tried has worked for our child, and I have been battling this since he was two years old. You are the voice my son does not have, and for that I am great-full. I could not explain in better detail what my son goes through than you have explained in your posts. Not only have you helped me understand what he goes through; you have also helped my me treat my son. God put you on this earth, and gave you a voice that many children could only dream of having at your age. After many years of fighting, and endless researching I truly believe god led me to you.

    Melissa Bradburn

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  18. Melissa-Thank you for sharing, it is so encouraging to read that Erika's words still reach families like you. I do believe that her voice is a blessing to us all.
    Mama Bear

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  19. I have to agree with you Mama Bear because I honestly was at the end of rope. I love my son dearly, but he was getting more and more out of control the older he became. Originally he was diagnosed ADHD he is a very hyper kid, then that diagnoses led to ADHD/Mood Disorder however none of the mood stabilizers he was on worked for him (Geodon, Abilify). We were seeing very obsessive behaviors so he was given a new title of OCD with ADHD. Payton went to the doctor this week and I took Erika's words with me. I told his doctor if I could only put her in my sons body this would be my child. As a parent it is hard when you feel that your child has gotten the best of you, and you struggle with not understanding how to help them. I still worry about him getting to the point Erika was because of things he often says like burning the house down for example. The doctor said because of his age she could not say he was Bi-Polar for sure, but did say that there was more to his Mood Disorder than how normal mood disorder is defined. She said they are now doing studies on how Bi-Polar affects children at younger ages, and are finding that they cycle very quickly in moods much like my son is doing. He goes from anger to happy to sad all in matter of minutes or hours depending on how long he stays anger. He often refers to his brain being a battery and when he gets upset he is re-charging his battery before I was like umm ok sounded nuts and I did not understand. After Erika it makes perfect sense he is at his point of going into a rage and because I nor his father is fueling it he is going to fuel it himself. I know how hard it has been for me as a parent so I can only imagine how hard it has been for my child. They added a new medication to his ADHD and OCD medications and today was a rather good day for us all. Had God not led me to this site the other day I may not feel the relief I finally felt today. I have Erika to thank for that she is a miracle child I hope she truly understands that.

    Melissa

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  20. Melissa- I'm so glad to hear you're seeing good results with the new meds!

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  21. I am so glad I took the time to read this post and all of these comments. I have a 6 year old daughter who we thought had ADHD. She has always been a giant handful, but over the last year she has changed. Especially this past fall. We were lucky enough to be referred to a doctor who is supposed to be the best at diagnosing, and he told us he thinks she has bipolar disorder. We did not want to accept it at first, but we did read "The Bipolar Child," and it did sound just like our daughter with the exception that she had "flip-out episodes but no "rages" yet. Right now we are going through the process of getting her in to see a child psychiatrist for a second opinion simply because we are not sure we want to give her the Risperdal the first doctor prescribed. Right now we are at a point where the part of me that wants to give it to her is the part of me that wants to make my life easier. But the majority of me does not want to give it to her yet because I am not 100% sure that is the right thing for her yet. Someday I will have to explain to her why I put an atypical antipsychotic into her brain at the age of 6, so I have to be sure. While we've been playing this waiting game she experienced her first obvious rage last week. And it was just as you've described in your posts, Mama Bear, and it's just as "The Bipolar Child" describes, and every other post in supports groups online. Thanks to you and the other resources available online I didn't get upset, I didn't show fear, and I didn't lose it inside. I just blocked her blows, tried to get her back in my car when she tried to run away, kept her from hurting her sister, and finally got her home. The day the doctor prescribed Risperdal I cried until my kids came home from school. That was my day of lost emotions. I'm glad I had it so that when her first clear-cut rage occurred, I had it behind me and your words along with all of the other information I've gained in the last couple of months so that I could just calmly deal with it. It took us an hour to drive the two blocks home from school because I had to keep pulling the car over to block her blows. When we got home she just cried and cried and held her bunny. She came in the house later as if nothing had happened and did her homework with me (it went better than it usually does, at least). I've been searching for words from someone to help me understand what my daughter is feeling, so Erika's posts (and yours, Mama Bear) are a godsend to me. That girl needs to publish a book! It would help so many people.

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    Replies
    1. I’m so glad you found this post, Erika’s words are so helpful and it really helped my son to hear them too. I’m glad you were able to get through your first rage so well, most of us our very unprepared when it first happens and we don’t always handle it so well.

      I can completely identify with your worries about the medication. I think it gets much easier when the kids are older and they can share more about what they are experiencing. Now that my son is older, he can tell me that the medications are making a difference in his life and he doesn’t want to stop them. That really helps with all the questions I had about starting meds, now I know it was the right decision. But when they are younger, it is much harder to know and that makes the decision even tougher.

      We just started our youngest on Prozac for his depression and the results have been amazing. He is a different kid than the depressed little boy who was drawing pictures of his dad in a grave. Seeing that positive reaction has helped to confirm to us that we did the right thing for him now. I don’t know how it will go in the long run, but today I can see that we are doing what’s best. Unfortunately it isn’t always so easy since the first med doesn’t always work or side effects may come in the future.

      I wish I could help you with your decision, but only you can make it. I encourage you to take it day by day. And know that you are doing your best and that has to be good enough. Get as many opinions as you need. Just know that you may be a lot of unknowns because she is so young, most doctors don't like to give a diagnosis until they are older. I wish you lots of love and hope you find help for your sweet girl soon!

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