Sunday, June 27, 2010

Security Please!!!

Today was a really bad day, but some good came out of it.

After a week of things getting worse, our son became very impulsive today. At one point, after running out of his timeout laughing at me, he collapsed on the floor and began crying, saying that he was feeling sad and didn’t know why. He went from smiles to tears in less than 2 minutes.

Then as the afternoon went on, he continued to feel impulsive. He was picking on his brothers when he called me desperately to say that he didn’t know what was wrong, but he felt too much energy inside and felt like he wanted to hurt someone. So Dad took him for a walk around the neighborhood to release some of that energy.

After dinner, I took the boys for a swim at our community pool, hoping to help settle him down. But he was still struggling with his impulses and was overly sensitive. When it was time to leave, I told him he couldn’t go to the spa because of his behavior and then his trigger switched.

He tried throwing my stuff, but when I wouldn’t let him, he picked up a rock the size of my shoe and threatened to throw it at my head. I yelled at him to put the rock down, but he stared at me with a smile on his face and shook his head “no” while gripping the rock in his hand, over his head. After a moment of staring me in the eye, he threw the rock just over my head (it was obvious that he didn’t want to actually hit me, yet it still scared me).

At that point, I knew that things were just going to escalate, so I grabbed one of his arms to keep him from running off, but he used the other hand to hit my 5 year old’s face. At that moment, my 5 year old is crying, my 7 year old is yelling that he’s scared of his brother as he hides behind a tree and I’m sure everyone at the pool was watching us.

I grabbed both of his arms to restrain him as we began to walk, I could feel that he was up for a fight and I knew that things were going to escalate once we got to the car. Trying to keep things under control, I yelled to the security guard “My son has an illness and I need help getting him to our car safely.” Thankfully he stepped in and another mom, who was just a bystander, took my younger kids under her wing as I took my restrained son to the car.

What was unnerving to see was that my son didn’t change in the presence of these strangers. I was hoping that he would pull himself together, but instead he remained disobedient with a smile on his face, even hiding in the trunk of my van. I could tell that he wouldn’t be safe to drive home with the other kids in the car, so I had to call my husband to drive him home in a separate car.

Once home, our now calm son shared how mad he was that we’d changed his medication. He said that this kind of stuff happens every time we mess with his medication. He said that he was feeling angry, sad and had too much energy and he didn’t know why he felt this way, he had no reason to feel angry or mad, it’s just how his body was reacting.

So this is where the good part comes in. We learned a lesson tonight---If it ain’t broke, don’t fix it!

I hate to say that I regret reducing the Tenex, because without this reduction, we couldn’t be sure that he truly needed this medication. But after this trial, we’ve clearly seen over the last few weeks that once we started reducing the Tenex, his impulsive behavior increased. This affected his ability to get along with others, to be safe and to sleep well at night, since he would have “too much energy” inside him. Even our 7 year old was begging us to put him back on his regular medicine.

I feel sad for my son to have to go through all this crap. Just when things got good for him, the doctor wanted to change things again. My husband and I both agree that once our son is stable, unless he’s suffering from side affects or the meds stop working, we’re going to leave his medication alone, even if that means a fight with his doctor. My son has to go through so much to become stable, I bet he must really be frustrated by “us adults” who are always changing things on him. This is his body and he’s telling us to LEAVE HIS MEDICATION ALONE!

So we’re listening... and if it isn’t broken, we aren’t going to fix it.

16 comments:

  1. I agree. I never fool with medication unless I have no choice. And, for my youngest, I found a shrink who shares my philosophy :)

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  2. Oh wow! I'm sorry you had to go through that. But at the same time it's probably good that you have proof that certain med was working. Sometimes that can be relieving as welll.

    I hope things get better!

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  3. Starlightembers [Erika]June 28, 2010 at 11:35 AM

    I have commented here once before on your post 29 days (http://mysonhas2brains.blogspot.com/2010/04/29-days.html), 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.

    Erika

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  4. 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!
    Mama Bear

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  5. 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.

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  6. ....continued

    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).

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  7. ...continued

    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.

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  8. ...continued (thanks to character limits)

    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.

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  9. ...continued (last time!)

    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

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  10. Wow Erika, I'm so impressed with your gift to communicate what's so complicated. I can't tell you enough how much I appreciate your feedback. It’s greatly valued. I’ve already saved your posts and will use them to help my son and to help remind my husband and I what my son is feeling as he goes through these ups and downs. You have provided some great insight such as how hard it is for him to communicate clearly during an episode, so maybe having signals he can use, what a great idea!

    I thought is was helpful as you described how mania drives a person to have to "do something", I've seen this in my own son, needing to start a fight, need to take off on his bike, the need to destroy something. It seems that this drive overtakes him and I really appreciate how you showed me it's part of his disease.

    I'm also sad to hear how the depression affects you, you mention that at times you wished you were never born. I've heard these same words so many times from my son when he was in this phase. It is frightening and simply breaks my heart that you precious children hurt so much inside.

    I also thought it was helpful when you described feeling terrified in a rage when put in a timeout. I have seen this reaction in my own son, he seems desperate to avoid being alone in his room, clawing at the walls and striking back at me. I am going to discuss this further with his therapist and I hope we can find a better way of dealing with his rages when he becomes unsafe.

    I also find it a helpful reminder that raising our voice etc actually fuels the rage. It's hard to remain calm when our son is hurting others and being destructive, but your reminder reinforces the training our therapist is teaching us. It's nice to hear in your own words the affect we can have during an episode.

    I love your idea about volunteering so he can be reminded of his value. I know that living with this illness has made my son feel worthless, to have experiences outside the home that remind him of the good he brings into this world is a fantastic idea!

    I am happy to share that my son had a much better day yesterday. He woke up feeling different inside, it's like the chemicals were back on track in his brain. We have started to have "night time" walks together where we can spend some time alone outside the house. This has been a wonderful time for us and he's shared how much he's liked hearing what you had to say and how it made him feel good to not be alone in all this.

    I've really enjoyed hearing all you have to say and found it helpful in more than one way in understanding what my son is going through. I would love to post your comments on my blog as a separate blog post so other parents can learn from you. If this would be ok, let me know. If not, no problem.

    I wish you great success and health, you're an amazing girl who has so much to offer the world. I'm so glad you have reached out to me!

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  11. 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.

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  12. 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

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  13. What . An . Insight! I was glued to this entire thread. I've been scouring the internet for over a week trying to find information like this. Erika you are my savior!

    You bring me home. Although you still have rages, you prove that it gets better. If you ever feel up to it...I'd love to ask you some (or maybe a lot...) questions. My 7 yr old also has bipolar, as do I. So I can relate to both of you girls with all theses comments.

    I'm glad I was able to read it.

    Erika, if you do feel up to it, shoot me an email. mb (@) marybethsmith (.) com (remove the parenthesis and spaces...just trying to keep away the spam bots!)

    PS...you are an amazing writer. I hope you put that talent to use young lady!

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  14. We have just been going through the same thing, I messed with the tenex feeling that he didn't really need it for the summer. Needless to say we are going back on our reg. dose.

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  15. wow Erika, you have helped me in ways only you can imagine! I am learning from this blog that my son is not so different, but the same as you and many others. That in itself is such a relief. You have just touched upon every issue we are dealing with. This insight is so helpful. It brought tears to my eyes. It was as if someone had wrote his story for him. Now I have a much clearer picture from his side of things. Thank you so much. I don't believe that God makes mistakes. He makes everyone who they are for a reason. I am sorry for the pain you have to endure. Because of your strength however, you are doing amazing things for others who desperately need you. Trust that there is a great plan for you. I will be forever grateful. God Bless

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  16. I'm so glad that Erika's story continues to help families, I do believe God can use our life in ways we can never imagine.

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