Friday, February 19, 2010

Something is Wrong with My Son.

It’s very hard to start a blog when you’re still in the middle of chaos. I’ve read books after people have overcome their life’s challenge, but to write about my challenge when I’m still in the middle of it makes me feel overwhelmed. I honestly got stuck on what to call this blog, how do you give a name to a blog when the doctors don’t want to give a name to your child’s illness?

So I’ve decided to start with my son’s own words. “I have two brains. One side is good and the other side is bad. The bad side takes over and makes me do bad stuff.”

It seems so simple, coming from my then 7 year old son’s mouth, but in a nutshell, he’s perfectly described his life experience for the past two years. My son has two brains, one that’s loving, intelligent, creative, silly, disciplined and curious, then the other brain that takes over and becomes irritable, mean, disrespectful, anxious, depressed, and violent.

After two years of doctor visits, therapy, research and prayers, our therapist has finally given us a “label” for our son’s condition. He’s calling it a “mood disorder” with impulsive disorder and explosive disorder. So what’s this all mean? Well I’m trying to figure that out. But what I do know is that my son has a mental illness and that brings me great sadness for our son and my entire family.

22 comments:

  1. I'm crying as I read this because we're here. My son only has these rages at night. He's never hurt or hit anyone. He doesn't even remember everything after. We are working with a psychologist, psychiatrist and a neurologist to figure it out (and my father is a psychologist.) He's fine during the day if he's not home--popular, athletic, social, intelligent. And when he's home, if he's bored, then watch out and at night, it can happen within seconds.

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  2. I can relate to the boredom bringing out bad behaviors, it makes it quite the challenge as a parent when idle times bring rages. I hope you find out something soon with your doctors, it must be helpful to have a doctor in the family.

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  3. OMG... I just stumbled upon your blog and I am riveted. I'm pouring through all of your posts with tears in my eyes. We have experienced so much of what you describe with our six-year-old son, and it's EXHAUSTING. It is so nice to find a place where somebody understands. I would love to trade email addresses so we can share stories. I've been fighting for a proper diagnosis four almost four years now, but I've had so many people tell me to "be consistent" and "try this or that parenting technique" that it makes me want to scream. We JUST started meds a couple days ago, after exhausting all other possible treatments.

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    1. I am a single mother of three. I married a sociopath. Now these behaviors are starting to come forth in my son. My ex destroyed me and made me feel beyond worthless. Now my son, who has been so close to me his whole life is becoming a stranger at 7. He has lost his empathy, something he used to have so much of. Now I question if he didn't just do a child version of what my ex did, and mirror my own empathy back at me. My girls try to emulate their big brother. I work so hard to do right by my kids and love them and be both a mother and father to them. Is it a stage? Or will I relive the same mental and emotional torture his father has and still does, 4 years after he cut ties? I can't even get my son, or girls into any form of therapy or counseling unless their father signs consent paperwork, which he already made clear he will not do. I love my kids but I wonder daily what I ever could have done to deserve the cosmic joke I seem to be living. My heart genuinely goes out to anyone who has to watch their sweet babys life slowly unfold with any kind of heart ache like this.

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    2. HI K9semperfi,
      I am sorry to hear your story, your situation sounds difficult. I do know that it is possible to stop the abuse and help your kids get back on track. Therapy and medication can really make a life changing difference for some kids. I am not familiar with the laws in your area regarding divorce, but I would seek more information to see what you can do to get help for your kids without the consent of the father, whether it be through the court system or lawyer. I would also start documenting their behaviors and what you are trying to do to help them. Over time this may give a history to help demonstrate the need for further intervention. Maybe start with your pediatrician to see what they can suggest. In the meantime, I would recommend the book Raising Winning Kids without a Fight:
      http://www.amazon.com/Raise-Winning-Kids-without-Fight/dp/B00AZ82FD2

      This book helps you deal with the power struggle with challenging kids. We have used it and it works!

      That may be a good place to start until you can get more medical intervention.

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  4. Hi Gina,
    I'm sorry your family is hurting too. I know how hard it is to try all the parenting methods to find that nothing works. Hopefully you'll find some progress with medication. If you would like to contact me personally, just post your email here and I'll contact you or you can do a search for me at the website:
    http://www.bpkids.org/

    Look for my user name “Mama Bear” and you can contact me privately through that site too without having to post your email.

    I look forward to hearing from you!

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    1. i am a single mom with an univolved heartless ex. im so confused im not sure if blaming the fatherless situation is working anymore because my 8 yr old son sounds so much like what ive been reading except he verbally abuses me as well. if i try to help him when he is hurt ie; let me put a bandaid on he will rage and say back off yo mfn btch! i love him he is so cute when he is himself - people comment on his wit and cuteness but they dont know how drained and hurt i am. i have been having him evaluated since he was 5 and still no dx. oi plan to go to boston childrens hospital i hope i can get an anwer. i keep reading but the disorders really sound alike!he is very defiant and controlling too is this part of the mood disorder? i feel so sad for my oler 10 yr old son he suffers too just being involve in it.

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    2. My heart goes out to you T. I don't know how single moms do this on their own.

      I’m glad you are going to the Boston Children's Hospital, I hope you get some clarity, but I will warn you that it can be very difficult to diagnosis a child. You are right that so many illnesses have similar symptoms, then you add to that the fact that the symptoms change as they age, which can either make it more unclear, or hopefully help determine a diagnosis.

      I can say that my son’s symptoms got worse as he aged and new symptoms appeared which has helped us come up with a "working diagnosis" but even with that, it's possible that the diagnosis could change as he goes through his teens years and into adulthood.

      Regardless of what happens, some good advice I got, which today I still struggle with is, “Don't worry about the diagnosis, accept that it may not be figured out until your child is older, but instead, focus on treating the symptoms.”

      When you do that, you can let go of the struggle and focus on making your child better.

      The best place to start is with a good behavior modification plan. Once that is in place, you can then evaluate what symptoms are left and treat from there. Even kids with a true mental illness need to live under a behavior plan, it becomes the framework for everything else and can even improve symptoms caused by a chemical imbalance. We got our current plan from our psychiatrist, it's from the book:

      Raising Winning Kids without a Fight
      By Hughes
      http://www.amazon.com/Raise-Winning-Kids-without-Fight/dp/0801893402

      The book is written for kids that suffer from mental illness but also can be used on all kids that struggle with behavior, we use it with all of our kids and have had great success. It's particulary helpful for defiant children.

      We also use Magic 1,2,3 within the above plan.

      I hope this helps you a little, let me know how Boston goes, I wish you the best!

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    3. T-Regarding your question about the defiant, controlling behavior being a part of a mood disorder. Yes, this can be part of it, but it can also fall under a lot of other disorders/behavior issues.

      What other behaviors & symptoms does your child have?

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  5. Hi Gina,
    I'm really sorry your family is going through this, I know how defeating it is to try all these parenting methods and have nothing work. I hope that you find stability with medication, don't give up if the first one doesn't work, it can be a lot of trial and error unfortunately.

    I did send my email to your facebook account, if you didn't get it there, you can post your email here and I'll contact you directly, us moms can use all support we can get.

    I look forward to hearing from you!

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  6. Just discovered your blog and I was so happy. My son(16) has just been diagnosedwith bipolar although I'd say he's had it since about 18 months old. It's been such a long road to get to this point and even though I suspected that this would be the outcome my heart is broken for what he has been through and for the long road ahead of him.
    I truly believe that with the support of other parents of bp kids, family, and the medical team we can help our children and each other.

    I'm going to try to add you on Facebook ift that's ok. I'm maryessie@gmail.com

    Keep the faith!

    Leslye

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  7. Hey Leslye,
    I'm glad you found my blog. I’m sorry to hear about your son’s diagnosis, I’m sure that must be scary news to hear. I hope that this diagnosis will be a path to healing, to getting the help he really needs.

    Unfortunately, Mama Bear isn’t on facebook, but you can always reach me here, I read all the comments. Maybe I'll look into an email address for Mama Bear so you can reach me privately. I know sometimes it's hard to post in a public forum.

    I look forward to hearing from you again and hope that together we’ll get through this and help our children thrive!

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  8. Mama Bear, I am TRULY in shock right now because I feel I could have written these exact words myself. My 8 year old son, who has been treated off and on for his mood disorder since kindergarten, recently told me the very same thing: that he has two sides of his brain, one side is good and the other side is bad and makes him do bad things. (He specifically pointed to left side of his forehead/frontal lobe area as "bad" and the right side was "good.") He has also commented that he experiences pain in the left side, feels like there is a battle of good and evil going on in his brain, and that he feels like his brain is 'splitting in half.' As a parent, I envision a neurodegenerative process going on in my son's brain (he says "I feel like I'm getting dumber and like my brain is being beaten up"). What a helpless feeling...I feel like his brain is being damaged on a cell level and all I want to do is to protect it.

    Otherwise, my son is this normal, sweet, loving, intelligent boy...which is why it is so startling and scary when he shifts. His doctor recently switched him from Risperdal to Abilify and so far so good! Unfortunately I don't know where we would be without meds.

    Anyways, when I read that your son said the same thing, for me it feels like more validation that this is something very real that is going on a physiological level. I'm so glad I stumbled on your blog! I look forward to reading more of your posts. Good luck to you on this difficult journey.

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  9. Paige- Thank you so much for posting here, I’m glad you found my blog. It really is incredible how many of our kids are having the same experiences, I’m convinced that someday they’ll have this all figured out and our children will be validated. It really helps me to read about other kids who have explained their brain in the same way, thank you for sharing and I look forward to hearing from you again.

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  10. For some reason, I'd never read your first post. I just did and wanted you to know that we both started our blogs (about our boys) the same way: about the middle because that's where we are. Interesting! Hope your son is still doing well on the lithium!

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  11. Thanks Sarah for reading my old posts, yes, my son is still doing good on Lithium. Christmas vacation will be challenging, so we’ll need to hold on tight until he returns to school and gets structure back in his life. I hope you have a good Christmas this year!

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  12. Thank's for sharing your story. I'm Going Through the same Thing. My son has gotten Four different diagnosis, Kindergarten is was add/adhd combined with oppositional defiance disorder.Age 7 he the Dr. added explosive mood disorder. About 3 weeks ago my son was hospitalized for the third time within a two month period. He's only 8 years old. While hospitalized the 2nd time the hospital doctor diagnosed him with bipolar. Sometimes I feel all alone. I'm a single mother with no contact with his father. You just got a new follower thanks for taking us along on your journey it's very encouraging and helpful to hear from other parent's going through the same thing.

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    1. Hi Michelle,
      I’m so glad you found my blog and I look forward to you being part of our little online community. I’m sorry to hear about your son and your recent struggles. Hopefully with the recent diagnosis they may be able to treat him better with medication. I know for us Lithium was a major game changer, as my son said “I feel born again,” He said he felt happiness for he first time and for the first time in years, we started to see stability and were able to use behavior modification plans because he was finally able to learn. I hope you too will find a medication that brings you stability like this, just know that it is possible and things can get a lot better than where they are now, just hold on. I’m here for you, email me any time!
      Love,
      Mama Bear

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  13. I can relate so much to your situation. I have been on a 4-year odyssey with my daughter. Here's my story:

    She hates me.
    Screams I am a b$%@$. And other words I choose not to type.
    Rails against behavioral guidelines to prepare her for a successful life.
    She sleeps all day.
    Refuses to get up for school.
    When she goes to school, argues with teachers and principals.
    Detentions and in-school suspensions.
    It is always “someone else’s” fault. Quite often, I am the subject of her blame.
    Isolated from peers. They avoid the “trouble maker”.
    Four years of therapy and medication.
    Inpatient and day hospital care.
    One year of private school. She was no longer welcome there.
    Pulling out her hair.
    Picking her skin so deep with deep gashes and blood.
    Her siblings are fearful of her.
    We had to call the police as she raged and flailed.
    My daughter, who I adopted as a tiny and precious 2-day-old. I felt so blessed and dedicated to raise her with all my love and support.
    She now screams how I shouldn’t have children.
    How her birthmother “sold” her.
    And how I so deserved my multiple miscarriages.
    I am an adoptee myself. I can relate to adoption abandonment feelings. But this is different.
    All these years of nuture and care. Yet it is like I left her alone in the wild for all her 13 years.
    I am a hopeful person. Yet I am losing hope that she can change.
    Where do we go from here?

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    1. Yikes, that does sound so difficult. I’m really sorry to hear about what you’re going through. I wish I had an answer for you on where to go from here. I will ask, do you have support? Like a support group? Or friends and family that you can vent, cry and hope with? Often I find other parents are isolated as they go through these struggles and it makes getting through the day so much worse when you are doing it alone. If you find yourself in this place, I strongly suggest that you find yourself a support group. One thing I have learned is that you can't go through this hell alone.

      Also, can you change her meds? I only mention this because for while I thought my son was stable, because it wasn't as bad as it use to be, but we were still struggling and I had other moms point out that he may not be stable yet. Well sure enough, we added another drug to stabilize his moods and it improved things drastically.

      I think as parents we get use to a certain level of awful that we no longer know what normal is, so our perspective is way off and we think things are as good as they are going to get, when in some cases, a med change can improve things. But of course only you and your doctor will know, I only share this because I wish we had added his Lithium sooner, I had no idea improvement was possible.

      I hope you can find some support through this blog that you are not alone and that we really do understand your struggles. Sending you a ((hug)).

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  14. I am glad to find this blog as I felt so isolated and helpless. I have twin (fraternal) 8yr old boys and a 6yr old boy. One of my twins seems to have this disorder according to his new therapist. Lately things seemed get worse since my husband recently deployed to Afghanistan. So I am dealing with this behavior alone-I have no family nearby. Nor are we near an installation. He has trouble in school, home and even the kid zone at the Y. He was "kicked out of camp" last summer for hitting another boy. He drives me absolutely over the edge which is already easy to do under our circumstances. I myself take Prozac for anxiety/mild depression plus I have adult ADD. In a nutshell I too want to escape constantly mentally because I cannot physically do so. I read, exercise, and generally disengage emotionally when I can. It's nice to know I am not alone and I appreciate everyone's stories.

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  15. Hi Vicky,
    Welcome to my blog, I am sorry to hear about the challenges you face, it must be very hard to do it alone while your husband is away. Yes, you are not alone, many of us have faced these challenges and understand what you are going through, sending you a big hug!

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