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.

12 comments:

  1. I think you have to be very careful about how many horror stories you read and how much of that you take in. Remember, it can all become a self fulfilling prophecy. People have choices in life about how they choose to deal with situations that occur. Whereas one person may call the cops on their child for a behavior, another may handle the same exact situation completely differently and get a completely different end result. The same thing goes for hospitalization. Some people hospitalize a lot and some people almost never do. For the exact same behaviors. There are many, many children and adults living successful, productive lives with bipolar disorder. Think of Jim Carrey, Ben Stiller, Robin Williams, Linea Johnson, just to name a few. Treat your child as you would want to be treated in any given situation and choose to be one of those families who handles situations proactively and not always reactively and make success your self fulfilling prophecy.

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  2. Hello, I too are a parent of a now 15 year old bp son. I'm sorry if I offend anyone but I get so tired of people and docs, giving the name of celebrities who have productive lives. We really do not know thier lives, only thier fame. We don't really know what goes on thier daily lives. If I remeber right didn't Robin Williams have substance abuse, Jim Carey has gone from woman to woman, They don't seem that stable to me. and that's just what makes the news, like I said we do not know what goes on in thier daily lives. I want real people who are functioning well. The adults that I know and I know 3 are not functioning. I'm not trying to be a downer but I am that same mother who once read about the horror stories of other family's and was horrified at the thought of is this what's coming. And I can say it did!. But I do agree with Meg on one thing some people do hospitalize for some behavior that I really should have called police but I didn't. There isn't one doctor i've been to that can tell me my son will be a functioning adult. This is a horrible Illness for my son and for our whole family. I did loose who I was, I don't enjoy much anymore. I've been on a quest to find relief for my son so long that, that's my whole life. I've been at this for 13 years....and I'm tired, beat down, abused, but I keep going I have to for my son, I might lose the rest of my family in the prosses but how do you turn this off....I'm Sorry I know every child is different, but I belong to bpkids.org and very rare is there good news for our children...

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    1. I could wrote this about my life with my 14 yr old daughter. We have two younger daughters too. I'm so beat, drained, abused.

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  3. I resonated with every word that you wrote.

    There's this fine balance we have to strike and sometimes I totally miss that balance and fall to one side or the other. I need to be informed. I think it's very important that I know all about all the possibilities so I'm as prepared as possible for what the future might bring. On the other hand, I need to live my life in the here and now - and be emotionally balanced while I do it.

    I think of it as cultivating a healthy sort of a denial, one in which I'm aware of the possible horrors of the future, but also living my life and raising my child with a healthy future in our sights.

    It's a weird kind of mental gymnastics, but much of the time I can make it work. When the thoughts of my little boy on the streets or in prison (or worse) in a dozen years start to invade my mind, I focus on the fact that right now, today, he's safe in our home.

    And sometimes? The fear just comes and there's no way around it. This stuff is scary.

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  4. Anon - Sorry I offended you by saying celebrity names. And I'm sorry a 15 year old child has been able to take your whole family down like this. Why do you let it continue? You are letting his BP control your house and run you over. If it's that bad put him in an RTC or let him go to jail or boot camp and put yourself back together. If it helps any I know many Regular Joe Bipolar adults who do quite well in life and lead happy, successful, productive lives who are not celebrities. It's not all gloom and doom. And I hear a lot of great stories in my bipolar kids support groups - especially of kids that get older and are stable and have good lives. If you have never found one doctor that says your son will have a productive life, I would venture to say there is more going on that just bipolar disorder. Or you need to find some new doctors that are more competent.

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  5. I'm not sure I can comfort you, as much as I would like to. As you read this, however, please know that I am alive. I rarely rage, haven't had full blown mania (I've had hypomania) in a while, and I'm not suicidal most of the time. There's hope, and a reason to keep going. Now.

    Things got a lot harder for me when I turned twelve.

    Rages became self-injurious, and suicidal. I became more depressed than I ever had been. Spending days in bed. Cutting, and they got deeper. Suicide attempts. Delusional manias. Complete psychosis. Failing grades. Two hospitalizations in six months.

    That all happened in my three years in middle school. They were a nightmare, and the school was the devil's advocate, their way of handling sending me plummeting down my own rabbit hole (except mine had no magic; just twisted realities). As of now, I barely got my way through eighth grade, and am beginning to breath again. There are set backs, relapses in mood or psychosis. I wouldn't say I'm stable; but I'm learning to live sometimes, instead of simply surviving.

    One small thing gone wrong doesn't always send me into a meltdown and rage, and I can usually let it go and move on with the day, instead of grabbing onto that one negative for the rest of the day (week).

    I haven't seriously cut in over three months, and minor scratching is rare.

    I actually smile and have fun every now and then, even when I'm not manic.

    I don't want to kill myself, at least 85% of the time.

    Even when I have mood swings, they don't change so rapidly. Yes, it's terrible to be severely depressed; but at least it's predictable. (This is where I am now)

    Even when I become really unstable again, it doesn't last for months anymore. Those happy moments show up.

    Possibly, high school and all the new stress could send me back down again; but I have never felt this even, even if I am depressed. The teen years spread hormones like poison to the disease, and it rages like a monster you have not seen. The teen years so far have been my most painful, and I hate them so far for that. Yet, right now, I'm OK, and I can say that my life isn't a nightmare, or Hell, or whatever scares you the most when you hear noises at night. Things could change quickly; but for now, even though I am not technically more depressed than I ever was as a kid, I am coping and it pales in comparison to what I've been through.

    I'm not one for advice; but if I could give any, I would say to prepare and defend for all of the things you've worried, and what I've written here. Prepare, and also spend all the rest of your effort doing everything to try to stop it (intensive services as he gets older, day program before he gets to crisis point, etc), even if you have no control. Then, as everything shatters, hold onto every moment when things are decent. I remember those, and sometimes I wish my Mom remembers some of the good, too. I wish she would talk about those moments, even when I dwell on the despair. It would be nice for her to remember some of me, instead of my sickness.

    With Love,
    Erika

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  6. CORRECTION:

    not technically more depressed than I ever was as a kid, I am coping and it pales in comparison to what I've been through.

    *technically more depressed than I ever was as a kid, I am coping and it pales in comparison to what I've been through. (no not)

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  7. For Erika......As a mother of a teenager with bp,as, I will tell you I absolutely
    remember the GOOD in my son.and I know my son, not just his illness. But it gets a little overwhelming for me sometimes, It's very frustrating for me not to be able to take away my son's pain. So what youv'e read is only one part of what I feel. We as mother's feel many different emotions everyday.So this is our way of venting. kind of our way of raging....I hope you understand that. And Thank you for your insite to how YOU feel as a teenager. My son doesn't explain himself well.....Sincerely, Angie

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  8. Angie,

    Thank you so much for responding.

    I do understand to some extent, and I know my mom remembers the good. There are times, however, I just wish she would talk about them more, inside of staying stuck on all the chaos. It is hard, for all of us. She has a right to feel upset, angry, confused, and all the rest of the mash up. I would never take that away from her. It is just, she talks so much about the worst of it, and how horrible these three years have been, that I am left wondering if I did anything good for her to remember.

    As for what Mama Bear wrote, I hope I didn't come across as sayings he needed to write more positive things here. That's not what I meant at all. I was just asking her to, when talking face-to-face with her son, to talk about the fun times and when he did good, at least as much as the chaos. I understand that my Mom needs to vent, and I would never stop her. God knows I do the same. Every now and then, though, it would be nice to have a conversation about when we had fun doing X or when I did Y. Instead of just the scroll of things that went wrong.

    Thank you fir your insights. I hope I can voic this side of the story, for those who cannot yet.

    With Love,
    Erika

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  9. I agree with you Erika that it’s important to talk about the good stuff. In fact I usually don't talk about any bad stuff with my son, I look to express my pain with those close to me or through this blog.

    My son and I have even started to go for night walks alone and it’s been so nice for the two of us to connect in a positive way.

    I also keep a journal since the day I was pregnant with him and in it I record all the “good stuff” and a lot of funny stuff that I’ve experienced with my kids. In these journals there is no mention of the bad. I still write in this journal once a month, at least, and all of my boys love to read it with me as they grow through the years. It can be easy to be overwhelmed with the challenges, but reading these journals always reminds me that there is so much to be thankful for. I hope that someday when all my kids are grown, they will have forgotten a lot of the tough times and will be able to never forget all the good times through these journals.

    But I appreciate your words Erika, because we need to hear that ”speaking” about all the good times is just as important as remembering it. I will keep this in mind when I spend time with my son.

    Well I'm off to make a lego video with my son, fun times....

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  10. AnD Thank you Erika......Omg, where did you come from young lady. U humble me. and you are absolutely right!!! U are very special! u are a voice for the children that can't express thier feelings. And you let us parents know what we are doing wrong. But in our defense I guess we talk about the chaos because it's a little unreal for us. But you are right we should really say the good you bring to our lives. But I can assure you we do. I will make it a point tomorrow to tell my son about all the good times we ahve had and how we will have them again. I noticed you were on the bpkids.org site. Please go to the forums section click on general and then click on "A song I wront for my son" theres a link i've posted to a song I wrote for my son who I adopted. I hope you see how us Mother's love you all unconditionally...I will take youe advice. Thank you!!! Angie

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  11. Erika-By the way, this is exactly why I like your feedback. You can tell me things from my son’s point of view and that is so helpful for me.

    And thank you all for participating in this post, it has been very helpful for me!

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