Wednesday, July 28, 2010

My Visit to Stanford University


This past weekend, I went to Stanford’s 6th Annual Mood Disorders Education Day. Overall, I’m so glad I went, there was something special about being in a place where other people understood.

The lectures themselves were too short, so the information presented felt very condensed. I was disappointed that I didn’t learn more, a lot of the information seemed like stuff I’ve already learned from my own resources.

However, the breakout sessions (where we could ask questions to the presenters) was worth the long drive alone. I attended Dr. Manpreet Singh’s session that covered child and adolescent mood disorders. This was a very relaxed setting where we could ask any question. Not only did I find it very interesting, it was very informative.

Here are a few things that stood out in my mind after the event:
(Please note that this is my interpretation of the information presented)

Dr. Singh did confirm that bipolar does look different in children, than it does in adults. When I asked her if mania appears as irritability in children, she said yes it can. If they use irritability as a symptom of mania to diagnosis bipolar illness in children, they must have an additional symptom from the Diagnostic and Statistical Manual of Mental Disorder (DSM-V). So in this case, the child must show 4 symptoms together for a period of time instead of 3 to qualify as bipolar.

The earlier the mood disorder occurs in the child, the more severe the bipolar illness will be as an adult.

They’ve found through research that talk therapy can change the architecture of the brain. The brain is changeable.

Lithium has shown to actually restore the amygdala in brains where it was too small.

It appeared that the proposed diagnosis of Temper Dysregulation Disorder with Dysphoria (TDD) is not a welcomed label by researchers. It seems to only complicate things even more. It’s just another label without enough information or research behind it.

In the age group of 10-24 year olds, suicide is the 3rd leading cause of death. Females attempt suicide more often, but males succeed more. Many of the suicides occurred after an improvement and treatment of suicidal thoughts. After treatment, they now have the energy that wasn’t there before to attempt suicide.

Intact families have better outcomes. (This was encouraging to me.)

I was surprised to see that “shock therapy”, Electroconvulsive Therapy (ETC), is still used in the treatment of depression and is considered a gold standard. It’s 90% effective vs. meds that are only 50% effective. The downside of this treatment is memory loss and the high number of relaps that occur. (This is considered gold standard?)

I was also surprised to see other devices used when meds don’t work. Some are inserted into the brain (TMS), others in the neck (VNS) and others into the chest (DBS). It was very sci-fi.

When it came to substance abuse the following statistics were alarming. In the case of normal population, 17% have a substance abuse disorder. When it comes to Bipolar I patients, this number jumps up to 61%. In Bipolar II it sits at 48%. They also found that alcohol brings on mania in bipolar patients.

In Dr. Terence Ketter’s presentation he shared that through research they’ve found that creativity is enhanced in bipolar disorder. They contribute this to the negative and changeable feelings found in bipolar individuals. With the negative feelings comes intuitive thinking and the changeable feelings brings open-minded thinking.

Researchers are working to establish a brain scan or blood test to detect bipolar illness. We may be 20-30 years away before they accomplish this.


In the end, I realized there are a lot of unknowns. They still don’t know why some mood disorder children grow up to have bipolar illness, while other’s don’t. The message that medication doesn’t cure our kids, but is only a tool along with therapy was strong. It was also crystal clear that medicating your child is a tough process that’s always changing. One speaker, who lives with bipolar illness, pointed out that in the past 10 years since his diagnosis he’s been on 14 different medications. There’s no exact answer and the path is different for everyone.

I have to say that for me, my favorite part of the event was being able to meet other parents going through the same challenges. I met this wonderful couple who opened up and shared their journey regarding their young daughter. It was so incredible to speak face to face with other parents who really understood what it’s like to walk in my shoes. Even though I was miles away, it felt a little like home.

Friday, July 23, 2010

“Just Say He’s Autistic”

We’re taking our family to Great America Amusement park... I know, it’s crazy, but we’re trying to do it, knowing that we may not stay all day. One of the challenges our son faces is sensory overload that can put him into a panic attack. In the past, our son has become overwhelmed by crowds and loud noises, but this was before his mood stabilizer. So we thought we would give it a try, since we’ve seen a big improvement in this area due to his mood stabilizer, Trileptal. Plus, he wanted to go, so we’re up for it.

I’ve read on other blogs about parents getting special accommodations for their kids to help with the long lines that can be overwhelming. I know Disneyland provides this service so I gave Great America a call.

When I explained to the staff our child’s challenges, such as sensory overload, anxiety issues and explosive disorder. Her response was, “Oh yeah, we provide a pass for autistic kids for this. So is your son autistic?”

I explained that no, he had a mood disorder, but faced very similar challenges as an autistic child when it came to these environments (I know this since I babysit an autistic child). I then explained that I was more than happy to provide a letter from his doctor, as well as proof of medication.

Her response was, “Well ok, just come to the front desk when you get in the park and just say your son is autistic and we’ll provide you the pass.”

This got me thinking. As long as our kids remain undiagnosed, their illness remains unseen. It seems lately that autism is everywhere, in movies, books and prime time tv series such as Parenthood. This is a good thing, since it gives a voice to the illness. I believe that society is much more accepting of autistic kids, schools are more accommodating and in general we’re all more educated about it.

But with our kids, who remain undiagnosed because our doctors want to “wait and see”, our kids can’t easily explain themselves, they can’t be understood and we can’t really educate our own kids on what their living with. Instead, we walk around trying to explain a list of disorders that our child has and in the end, society still wants to label our kids, as in the case of Great America, “just say he’s autistic.”

Thursday, July 22, 2010

Time-outs = Explosion!


Today my son had another rage because he refused to go into a time-out after hitting his brother. This seems to happen whenever our son is not stable. He just explodes as soon as he hears the word “time-out”. It’s not like he’s being sent to an evil place, he has a nice room with plenty to do, but the thought of being placed in there just escalates his behavior to the highest intensity. He becomes violent, screaming and throwing things, taking a mild situation to a threatening one.

We had discussed this challenge with our therapist at our last appointment, but he insisted that we continue to do time-outs with my son locked in his room, he said that there was no alternative to calm him down and keep us safe. He even had us practice going into time-outs when he’s calm, giving him rewards for doing this. We would have him go into his room with a pretend time-out and have him think of ways to calm himself down, telling himself that this wasn’t a bad thing, only a step to make him better. Well the therapy sessions went great, my son practiced this everyday, but just as I told our therapist, once his trigger is pulled, all common sense gets thrown out the window and the situation turns into something very ugly.

Today a battle took place at his bedroom door when I was trying to put him in his time-out. Since he’s broken the locks on his door, I have to hold the door shut to keep him in his room. The problem is that he’s a lot stronger and even more so in a rage, so he’s pulling on the door from the other side, jabbing a long stick at me through the door. If I open the door, he’s ready to run out and cause harm to others, so it becomes a tug of war of trying to keep him in his room. In the end, I couldn’t keep the door closed so I had to hold him on the ground for over 30 minutes while he struggles to get away, scratching and trying to bite me from the front and kicking me from the back. After an hour, we’re both sweating, I feel beat up and he’s now crying as he returns to a calm state.

Sitting on the floor, I held him in my arms after it was all over. He began to sob. I did too. I told him that if I could take this away from him I would, but I couldn’t. But what I could do was be by his side and love him. I reminded him that I would always love him no matter what.

Tonight I’m feeling so broken, I feel like a little piece of me dies after each of these major episodes. I can’t imagine what it must feel like for my son.

I’m feeling angry at his therapist (but can’t afford to change), I’m feeling sadness for my son and I’m feeling discouraged that this is what his life will be, always looking for stability knowing that it slips away so quickly. If only I could rescue my son and make him all better, but knowing my limitations, I continue to pray over him every night that God would heal him completely.

Tuesday, July 20, 2010

Sadness

Yesterday, the sadness returned. We just got back from a day of fun when my son was struck with sadness, he instantly began crying as he looked at me with desperate, confused eyes. I could see the alarming look on his face, as he was startled by this quick onset of emotion. Hoping to make him feel better, I tried hugging him and calmly reminding him that it’s just his brain sending the wrong signals and soon it would pass.

It wasn’t like he was upset about something or hurt, it was more like a computer that malfunctions and sends the wrong signals. Then, as fast as it came on, he would recover and move on. This same type of episode happened about 6 or 7 times yesterday in a 5 hour span. Each time he would run to me, with eyes begging for help, to make it go away.

Then late last night, when the last episode hit, he told me he was having bad thoughts. He said that he was thinking his parents didn’t love him anymore and that we were just pretending to. He knew that these were irrational thoughts, yet, they still took a hold of him. I immediately scooped him into my arms (even though he’s almost as tall as me) and told him how much we loved him and shared stories of our love, trying my best to fill his mind with good stuff, hoping to push out the bad.

When I tucked him back into bed, he shared that ever since the first episode that day, he was feeling sadness the entire time, it was only when the feeling was too strong to hold in that he would burst out into tears. With the exception of the final episode, where he was thinking we didn’t love him, he wasn’t thinking anything when the tears would hit, it was only a feeling.


Monday, July 19, 2010

Meet Robert Villanueva from NAMI



In case you were thinking of going to Stanford’s 6th Annual Mood Disorders Education Day, I wanted to share with you the above clip of one of the speakers, Robert Villanueva, who will be speaking on behalf of the National Alliance on Mental Illness (NAMI). Check it out!

* * *

Video Source:
Uploaded on YouTube by  on Jul 11, 2009

Sunday, July 18, 2010

So This is Therapy?


I met with my son’s therapist this week and after describing the voices he’s been hearing, the invisible man he saw and the quick mood changes, our therapist thought deeply for a moment and said, “There’s nothing more I can say to help”.

Hmmmm... I wondered, can’t you do some more research or something?

Our therapist agreed that what we’re dealing with is pure chemistry. If my son is well, he can do well and if he’s not, he can’t. In other words, when the chemistry is off in my son’s brain, no therapy is going to help. We can’t do any more than what we’ve been taught to do. We just have to wait for the chemicals in his brain to return to normal.

He then went on to say that my son’s case is very unusual, it’s like a “mixed bag of symptoms”. He finds the voices and visual hallucinations almost unheard of in children, then he referred to bipolar kids being less than 1% of the population. So this all seemed to stump him. He said that we have a moving target and he doesn’t want to look ahead into the future and get our hopes up. He just wants to deal with each symptom as they come and try our best to help him get through his childhood the best we can.

From there, he said the only alternative left is more medication, so I was told to speak with our psychiatrist’s nurse (the gal in charge pretty much). When I spoke with her, running through all the symptoms and when they occur, she said that it appears he was having rapid cycling and the voices were a concern. Our option is to increase the Trileptal, but first we were told to monitor these behaviors for a little bit more before we increase the meds. I like this approach, going nice and slow.

As I pushed further for what she thought my son’s symptoms were she said “It sounds like bipolar, but since he’s so young we just never know what will happen in the future.”

I asked her, “So you think it’s possible with all his symptoms that he may still out grow this?”

She said, “Yes... and we don’t want to label him at such a young age since this could be hard on him.”

At that I kinda laughed, “but he already knows something is wrong, we aren’t hiding it from him by not putting a label on it, in fact, he’s already labeled it. He calls it his ‘anger problem’ and said this week that it’s ruining his life”.

Then I asked her “So either my son has bipolar symptoms as a child and will grow up to be bipolar as an adult or he has bipolar symptoms as a child, but his brain will change as he develops and he’ll be free of medication and illness as an adult?”

She said “Yes. That’s pretty much what we’re looking at. So your job is to keep him safe, keep those around him safe and try and help him have the best childhood possible under the circumstances and don’t think about tomorrow, just take one day at a time because today is perfect.”

hmmmm...

ok.

Friday, July 16, 2010

Mood Disorders Education Day


Stanford University is having their 6th Annual Mood Disorders Education Day. This is a FREE event for anyone interested in learning about the up to date treatment of depression and bipolar illness. All you need to do is register online to reserve a spot. Here are the details:

When: Saturday July 24th, 2010

Time: 8:30 am – 2:30 pm

Where: William R. Hewlett Teaching Center, 370 Serra Mall, Stanford, CA 94305

Presenter: Stanford University School of Medicine

Agenda:
Child and Adolescent Mood Disorders Update
by Manpreet Singh, MD, MS

Bipolar Disorder Treatment Update
by Po Wang, MD

Depression Treatment Update
by Charles DeBattista, MD

Mood Disorders & Co-Occurring Alcohol and Substance Use Disorders
by Anna Lembke, MD

Perspectives from the National Alliance on Mental Illness (NAMI)
by Robert Villanueva

Perspectives from the Depression & Bipolar Support Alliance (DBSA)
by Katherine Lerer

Creativity in Mood Disorders
Terence Ketter, MD

Register Online at:
www.bipolar.org

So is anyone going???


Wednesday, July 14, 2010

Ask A Bipolar


I’m so excited to share with you Ask A BipolarThis is a new website created by two great gals who want to reach out to those who have questions about bipolar disease. This is not a medical site and they don’t claim to be giving medical advice, but what they do give is down to earth, real answers from their own experience of living with bipolar illness.

What I like about this site is that it provides a perspective from more than one viewpoint. Marybeth, from Beneath the Smiles and Sarcasm blog is a mom raising a son that has been diagnosed with bipolar, but she herself lives with the disease, so she can share with us a mother’s perspective as well as an adult’s. Then there’s Erika, yes you guessed it, from Meet Erika, and she’s a 14 yr. old girl that can give the teen perspective.

Now if you’re like me, searching for answers and understanding, I strongly encourage you to check out this website and please, ask them a question. We can all learn something from them and the more questions we ask, the more understanding we can have. I can personally share that I’ve asked both of them many questions in the past and have gained perspectives that were not possible from any mood disorder book. Even if your child has not been diagnosed with bipolar, like my son, you can still ask them about certain behaviors since many mood disorders share the same symptoms.

Now I’m not trying to claim that they’ll have all the answers or that every person suffering with this disease would respond the same, but what I can promise is that these gals are genuine and really care about this community and want to reach out and help in any way they can. I really admire their courage in opening up their lives and I’m so thankful that they’ve given us this gift in their website.

Check it out at:
http://askabipolar.com

Tuesday, July 13, 2010

Bumps in the Road


For the most part my son has been doing really good, so much better now that he’s on his regular dose of medication. But there’s been some bumps in the road.

Recently, my son has been interrupted by symptoms. I say this because he’s literally interrupted. We were feeding our hermit crabs together when all of a sudden he just begins to sob. Like deep, sorrowful sobs. He’s looking at me with a look of confusion, telling me that he doesn’t know what’s wrong, his body feels weird and he feels... sad. A few moments later he recovers and we go on our way.

The doorbell rings and a friend comes in to play with him and in an instant he comes running to me, overcome with what looks like anxiety, crying and saying he feels weird and doesn’t know what’s wrong. Once again, he recovers in a minute and is on his way to play.

Then at dinner, we’re all sitting down at the dinner table when my son is startled and begins to cry in fear, telling me that he saw a dark shadow of a man standing in our bathroom. I believe he saw something from his mind. This moment really broke my heart, how terrifying that must have been for him.

At the grocery store, he becomes very irritable because the sound of his brother’s voice and footsteps are bringing his anger out.

Then tonight I had to hold him when he went into a rage and hit me because I said he couldn’t have ice cream before dinner. After his timeout he tells me that his anger is ruining his life.

I’m not sure what to make of all this. Are these just moments where his illness breaks through the medication? Is his medication now an incorrect dose as he grows? Are these side effects from the medication? These symptoms are familiar for the most part, but they’re so unexpected and come on in an instance and disappear just as fast. This has been unsettling to us both, I just want to wrap him in my arms to keep all his emotions together, protect him from the pain I know this is causing him. Overall I’m happy with the direction we’re going, but I don’t know how to avoid the bumps in the road.




Monday, July 12, 2010

Erika’s Blog

I’m excited to share with you that Erika from my previous post “Meet Erika” has created her own blog in order to reach out to families in search of understanding. The following introduction is from Erika herself!

Since I joined this online community, many parents have reached out to me, thanking me for the insight and telling me that it made their child feel less alone. In truth, you all have given more to me than I feel I could ever give to you, and for that I THANK YOU! I am blessed to have this opportunity, and you lifted me off the ground. If any parents happen to find this blog, and would like to ask questions or talk, please feel free.
With Love, 
Erika

http://voicebeneathyournose.blogspot.com/


Thursday, July 8, 2010

Scared of What’s to Come


I was reading a support forum when I came across a post of a parent who was worn out from everything she’d been through. I can totally relate to that, but what struck me is a comment she made about reading horror stories when she first joined the forum at the beginning of her child’s illness. She wondered if that’s what she had to look forward to. Then years later, she found herself living out these awful experiences everyday.

This scares me.

When I first started looking into my son’s symptoms, I too read many stories of similar kids, but unlike our life, their stories contained outrageous accounts of challenges brought on by their child’s illness. Some were accounts of having to call the police on their own child during a rage, others experienced great pain as their child was admitted into the hospital (which by the way, unlike other hospitalizations, children with mental health issues are admitted into the hospital alone without their parents by their side). There were stories of children grabbing knives, attempting suicide, committing crimes and physically abusing their families during a rage. I could go on and on, but honestly, it’s bringing me down. What also was alarming was that these stories were not one of a kind, they were parent after parent reporting the same similar nightmares.

At the time, even though things were very hard, they were never that bad. But as I’ve learned over the course of this past year, mental illness is unpredictable and unfortunately we too have gone through some of those outrageous events that were once something I only read about.

So getting back to that post I read today, it got me thinking about what will happen in our future. Will things continue to get worse, will we experience the unimaginable in the years ahead? Will I be the same person I am today? Will my precious son be ok? I know I shouldn’t worry about tomorrow, but tonight I’m feeling scared of what’s to come and if I had a crystal ball, I don’t think I’d want to look.

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/