Monday, August 30, 2010

Rough Day

Today, my son’s anger escalated beyond control when trying to get him into a timeout. During his rage, he threw a toy at my face, busting the lens out of my eyeglasses and hurting me pretty bad inside and out.

This was the closest we’ve come to calling the police for assistance.

The neurologist called to say that we were denied a brain scan because our psychiatrist said it wasn’t necessary since she has him listed in her files as having Temper Dysregulation Disorder. It’s funny she has this listed in her file since she hasn’t communicated this to us and the diagnosis isn’t even official since it’s still under review with the American Psychiatric Association until it’s released in 2013. If you haven’t heard of this label before, this is the diagnosis they hope to use on kids who previously may have been labeled as bipolar. As our psychiatrist told me once, this future label will end the controversy on childhood bipolar illness (yeah, right).

I agree that this disorder looks like my son, but it’s only a limited view of him. It doesn’t take into account the voices he hears, the man he saw in our home that wasn’t there, his rapid cycling of sadness, his anxieties... need I go on.

When I explained to the neurologist that our psychiatrist is the last person that should make this decision because she’s already shown us that she isn’t properly informed with our son’s case, he said he would only give us a referral to a qualified person after we shared our feelings with our current psychiatrist because he didn’t want it to look bad. So now, I have to deal with office politics, pay more co-pays to tell a doctor that she isn’t meeting our needs before I’ll even get a decent referral.

In the meantime, I asked the neurologist to schedule us an appointment while we wait to convince our psychiatrist to approve the brain scan. Then I notified our psychiatrist’s office that we need to meet with her asap because we are unhappy with our son’s care. (and I’m bringing Dad as back up)

By the way, I was talking with my cousin who I mentioned in my previous post and it turns out that she was diagnosed with depression 10 years before the diabetes and final tumor diagnosis. This is why I need to make sure my son’s brain scans come out clean before I continue to treat with additional medications.

I still have a headache from the hit to my face and I’m ready to go to bed and end this rough day. As for my son, he asked me to sell him so that our family would be happy with him gone, then asked me to read to him the journal entry of the day he was born, he needed to be reassured that I still loved him.

I do... and I always will.

Goodnight.

Friday, August 27, 2010

Visual Distortion & Distorted Therapist!

When we visited our therapist last week, our son shared a recent symptom he’s been experiencing. He’s been having strange visual perspective changes. Like he’ll feel the room moving very far away or he’ll shrink and feel very small. It’s happened on and off while doing ordinary things, like taking a shower or playing with legos.

After my son left the room, I asked our therapist if he’s heard of this before and what causes it. Our therapist said, “Yes, I’ve heard of this, it sometimes happens to women while they’re being raped. It’s the brain’s way of defending itself, a form of detachment.”

WTH?????

Ok, so I ask him why this is happening to my son since he’s not under any kind of stress or trauma when this happens, he’s just playing with legos!

Our therapist responds with, “I don’t know why this is happening, but let’s not pay it any attention.”

GGGGGGRRRRRRR!!!!!!!!!! ( That’s me screaming inside my head)

I’m so mad about this, in fact, I didn’t even want to blog about this until today since it made me so mad. I can even feel my Mama Bear blood boiling as I type about it now.

As far as I know, if a therapist doesn’t know the answer to a question, they can research the question with all those books behind them. I understand there may not be an answer, but just telling me to “not pay it any attention” doesn’t cut it!

It makes me feel like he’s done dealing with my son. My last call to him yesterday wasn’t anymore encouraging. As we discussed my son’s destructive behavior, our therapist said that he can choose to let out his anger in another way, he can just do push ups.

Yeah, try telling that to my son when he’s in a rage... “hey son, give me 30, now hit the floor!”

Yeah... right, sounds like a winner idea.

When I told my son about this, he just laughed and said, “if I had to do push ups I would just get more angry”.

So, like so many other moms fighting for their children, I researched this symptom on my own. Thanks to one mom on a forum, I was given the suggestion to look into “Alice in Wonderland Syndrome”. This is neurological condition which affects human perception. Sufferers may experience confusion of the size and shape of their body or see objects with the wrong size and/or find that perspective is incorrect. Hmmm... sounds familiar!

This is a temporary condition that is often associated with migraines, brain tumors and the use of psychoactive drugs. It’s also present at the beginning of Epstein-Barr Virus (mononucleosis). With my son just recently having a bad virus, mono may be the explanation. But since he’s mentioned feeling something similar in the past, it may also be the medications. The final question I have is the tumor.

Ok, you’re probably saying to yourself... this is just the reason why parents shouldn’t research things on their own.

But let me first say, I do not believe my son has a tumor. However, it brings up a question that’s never been answered. After 3 years of treatment through our HMO, a handful of different medications and still no official diagnosis, our doctors have never looked at my son’s brain. We’ve never had any scans to check and see that he doesn’t have any physical problems.

Could there be something going on inside his brain that would require different treatment. In my own life, I’ve seen this same scenario. My cousin was diagnosed with diabetes. But after my cousin researched on her own and pushed her doctors to run certain tests, she was later diagnosed with a tumor on her pituitary gland. After surgery and treatment, she’s now a cancer survivor and living a healthy life. I always think, what if she’d never pushed her doctors to run more tests?

So, though I don’t expect my son to have cancer, I do feel it’s my responsibility to make sure that we’re thorough in my son’s treatment. Which for me, requires looking inside his brain, not just telling him to take drugs and do push ups.

So today I begin this fight. I’m meeting with our pediatrician and requesting a referral to a neurologist.

Watch out, Mama Bear is coming!

Wednesday, August 25, 2010

Smashed to Pieces


Last night, my son’s anger became overwhelming and no lemon scent was going to help. While in a locked time out, he smashed the light switch plate in his room to pieces. Since he didn’t have me to fight with, thanks to the new lock on his door, he had to take his aggression out on his room. Afterwards, he  kept yelling for me to “kill him” because he was disappointed that his happy streak had ended and he was so upset about not being able to control his anger and “ruining his room”.

This is a first for us, he’s never been too concerned about the damage he’s caused and what others would think of it. But now that he’s getting older, he’s worried what his friends will think. He mentioned last night that his friends would laugh at him when they saw his room because of the damage he’s done. I really felt sad for him, it’s not like he can learn from this and not break things again, we both know that this is out of his control, as much as he doesn’t want to do it, he just can’t stop himself.

We’ve tried giving him things to punch that are harmless, but it just doesn’t work, in order for him to feel better, he has to break something valuable. If you as a parent has figured out how to handle this with your own child, I’m open for suggestions.

The night didn’t finish there. About 15 minutes into bedtime, he came to me looking desperate. When I asked what was wrong, he just broke down and cried, he said he felt like his whole family was sad and even his stuffed animal was giving him sad looks. I reassured him that we’re all good and he would too, after these feeling passed.

Once I tucked him, seeing him smile again, it left me with one thought, is my son cycling??

Monday, August 23, 2010

Shades of Happiness

Last week, we visited my son’s therapist and he definitely recognized that things have gotten a lot worse. So we all agreed it was time to increase my son’s mood stabilizer, Trileptal. Since then, we’ve done a gradual increase and have seen a major improvement. In fact, tonight at our dinner table, we had an amazing time. We were all laughing, sharing stories of our day and just being silly. It’s like our whole family was feeling relief from the mood stabilizer.

Today, I happen to be reading a book called House Rules, by Jodi Picoult. In this book a character describes how mental illness, Asperger’s Syndrome in this story, affects more than just the individual. The character compared it to a red shirt being washed and bleeding, turning the other clothes pink. This was such a perfect description of our life, whatever color our son is, we too will turn a shade of it. (Picoult, 2010)

I’m thrilled to say that we’re all turning a pretty shade of happy right now. Not only has the irritability disappeared, but my son is smiling and showing acts of kindness, his painful fog has been lifted.

I thought it was significant when my son shared how the boy seated next to him at school was bothering him, by bumping into him and having mean expressions on his face. When I asked if he could tolerate it until our meeting with his teacher, he said, “ya, I can deal with it for at least a month!”

* * *

References:
House Rules
By Jodi Picoult
2010

Saturday, August 21, 2010

Making Lemonade Out of Lemons

This past week, I took my son to see his therapist. I left feeling very discouraged, I’ll save those details for another post. But what I did take with me was some interesting advice.

My son was told to smell a lemon to help him with his anger, yeah, you read it right, he’s suppose to smell the yellow citrus fruit whenever he feels anger bubbling up inside. Our therapist told us to zest it up a bit to release the natural oils and that the smell of it will make his anger feel better. Now what’s interesting about this, is that my cousin was just showing me her essential oils for massages and the one she picked out was lemon because if you smell it, it can make you feel happy. I have to admit that it smelled very good and I didn’t feel any bad feelings while sniffing away, so maybe there’s something to this.

Now don’t get me wrong, this is in no way a replacement for medication and when my son is very angry, a lemon will just become a weapon that’s thrown at my head, but for those small moments, doing something may be better than doing nothing and you have to admit, the smell of lemons is fantastic.

So last night my son was having trouble falling asleep because he felt angry inside, so I gave him a lemon and he used it until he fell asleep. It was kinda neat, I felt like I was making lemonade out of lemons.

Thursday, August 19, 2010

Meet Marybeth


I strongly believe that when we endure suffering of any kind, we have an opportunity to help others through our own pain. Now, I will admit that when I’m in the middle of suffering, helping others is the last thing that’s on my mind. Sometimes, we help others and don’t even know it and other times we take steps to turn our pain into something good.

That’s why I’m so honored to introduce to you, Marybeth, a woman living with bipolar illness and raising a son who is also bipolar. I believe she has done both, her wit and charm make people smile and her talent and compassion have led to a new website and book. Her previously introduced website, Ask A Bipolar, has helped many people who are asking those tough questions about bipolar illness and the book she’s writing, Taming the Crazies, uses her experience to bring bipolar illness on the radar of society in a teen fiction.

So it’s time to meet this great gal, just pretend that you’re in a studio watching an amazing interview or just laugh at me while I pretend to be Oprah.


So Marybeth, what made you decide to create the website 
Ask A Bipolar?
Well MamaBear, I've got to be honest...it was actually your site that got the hamsters running upstairs. (Picture them driving around in little Kias through my brain.) After reading the post where Erika explained how it felt to rage, then reading everyone's comments, I was inspired. I thought to myself, "Self....wouldn't it be awesome if people could have a place to go to ask other people with bipolar questions." (It's a day of mental pictures, cuz I'm totally picturing myself in a Window's 7 commercial!) And so I got in touch with Erika and asked if she'd be interested in doing posts like that on a regular basis. She loved the idea! And thus...Ask a Bipolar.


What do you hope to accomplish through it?
I just want to help people understand this illness better. I want them to know that they aren’t alone in their suffering, whether it be because they too suffer from the illness or because they know someone else who is. I want to help educate them and let them know that someone gets it!


What’s the most common question people ask?
I would have to say diagnosis questions. How, when, why, what did you feel....they pop up all the time. 


Have there been any questions that you can’t answer?
Two actually, but we were lucky enough to find two awesome people to help us answer them!


What challenges have you faced in starting a mental health website?
The biggest challenge so far has been gaining support from the larger organizations. Some are more than happy to help, but others shy away because of the length of time we’ve been around. It’s very frustrating. 


Tell me about the book you’re writing, Taming the Crazies.
It’s a book about a sixteen year old girl struggling through life riding the coat tails of her bipolar brother while also coping with her bipolar mother. Though a break up with her boyfriend starts the ball rolling, one bad choice (or three) from her brother could possibly ruin her life forever. As it is in her nature, she takes it upon her self to right his wrongs (as some bipolar siblings tend to do) and make sure both his life and hers get back on track. The problem is, she’s pretty sick of his crap. She has to decide to just move on and suffer the consequences his actions have had on her, or continue to clean up his messes in order to get her life back. 


What made you decide to write book with bipolar characters?
Earlier this year I saw a tweet from an agent that stated she wish she saw more books about teen mental health. It was something I’d considered writing about before, but didn’t think there would be much of a market for it. So I posted on my blog asking what other people thought of this idea. The overwhelming response made the decision for me. I sat on it for a few more months and one day the story just popped into my head. 


On a personal note, what are your toughest challenges in living with a mood disorder?
Reminding myself that even though I’m on meds, I’m not always going to feel better. Sometimes it’s very frustrating to be taking my meds regularly and still feel like life has no meaning. After all, I’m doing what I’m supposed to be doing...shouldn’t I feel 100% better? But unfortunately it just doesn’t work that way.


How do you manage to do so much while you and your son face such tough challenges?
Wine...lots and lots of wine. Ok, well not THAT much wine. Actually I just happen to have an amazingly understanding husband. He helps me sort out my priorities and supports all my adventures. My son does consume much of my time, but it’s getting better...for now :) 


Do you think that your mental illness has helped you in any way?
Absolutely! I wouldn’t be who I am if I didn’t have bipolar. I wouldn’t have made all the horrible mistakes I made and learned all the valuable lessons that I learned. I wouldn’t be nearly as good at parenting my bipolar child, and I would have never even considered starting this website!


Thank you Marybeth for visiting my site on your blog tour! If you want to hear more from Marybeth, check out her links below. Maybe you have a few questions you can ask her yourself!


Website: AskABipolar.com


Tuesday, August 17, 2010

Summertime Blues


Tonight, this post is more about myself, than my son. Summer is coming to an end, the kids go back to school on Thursday and as I think about our summer it all seems kind of... odd. I’ve been going through a weird phase, I guess you can call it the blues.

I think the weight of all we’ve been through and the concern that I have for the future have really brought me down. The long days with the kids, the stress, the lack of routine and not being able to sleep have taken its toll. I’ve been hurting a lot, I just don’t feel like me.

Can you relate?

But tonight, I’m feeling optimistic. The kids return back to school, giving me structure in our day as well as freedom from the “I’m bored” complaints. With the boys in school, there’ll be less fighting and maybe even some peace. We’ll also be returning to our church bible study group and connecting more socially, bringing a good dose of support.

It all reminds me of my childhood, when I would buy a new school outfit and supplies for the first day of school, everything felt like a fresh start, there was so much hope in the air. Tonight, I’m feeling that hope as I pack my boys’ backpacks and I’m praying that the end of summer will be that positive change that I so desperately need and an end to these summertime blues.

Friday, August 13, 2010

Crying After the Kids Go to Sleep...

If you ask me what I’m going to do tonight, the answer is cry.

You see, the kids are still up, I just fed them and in about 30 minutes I’m going to put them to bed, then I’m going to cry and let out all this aching pain inside.

I’ve been carrying this sadness around since this afternoon, when I had to hold my son through a rage. I had to hold him to the ground, then fight to keep the door closed, while he was trying to hit me with a toy gun. He threw my eye glasses across the room and he dumped glass cleaner all over his room. I was bit and kicked while I watched the veins pop from his neck as he screamed at me.

I realized more today that he’s getting stronger as he gets older, I barely had the strength to hold his arms flat on the ground while my legs tried to keep his feet from kicking me. We both were dripping with sweat and grunting as we fought to maintain control. If there was a referee watching our wrestling match, I think it would’ve been a close match.

This rage went on for almost an hour.

Tonight my joints are throbbing, I have rug burns on my legs, my shoulders and back are a mess from trying to pull the door closed for over 20 minutes, using all my body weight and still not having the strength to keep it closed. I feel beaten up.

This rage started when my son asked his brother if he would play a game with him. When his brother said no, he attacked his brother. I immediately put him into his room for a timeout and he exploded once again. I tried to keep the door open, to keep him from escalating, but it was too late, he was already holding up objects to throw at my head. Next, I placed him into a hold, hoping this rage could be wrestled out of him, that he would grow tired as he fought to get free. But that moment never came, he seemed to grow stronger and I could feel myself losing control, that my physical strength was no match for what was burning inside.

This rage isn’t the first this week. He had 3 episodes yesterday and this morning he woke me up to tell me that he could feel his anger coming back. This all follows a solid week of peace while he was sick on the couch with a virus, we knew on the 8th day that he was getting better when he destroyed his brother’s lego creations and paced the house in a bad mood within an hour of getting up.

Tonight, I don’t have the energy to figure this all out, I just want to cry... right after the kids go to sleep.




Thursday, August 12, 2010

A Place to Call His Own


Last week, our family sat down for dinner and a moment later our son quickly left the table and ran upstairs. When I went to check on him, I found him lying on the floor crying.

“What’s wrong?” I asked.

“I felt like I wanted to hurt somebody, so I ran to my room to get away from everyone.” he said.

WOW! This is huge. I see this as a big victory. For him to actually feel a bad feeling, then take steps to prevent hurting others is such a big step. It shows the medication is helping him think a little slower so he has time to react appropriately. It’s also showing that he’s learning how to cope.

The next day, my son asked if he could use our downstairs coat closet as a space for himself, he said that he needed a place where he could get away from everyone. I was intrigued by this idea, I mean, what kid wouldn’t want a place to call his own.

This is a unique closet that wraps under the staircase, creating a small space, like a little room. With great excitement, we moved out all the storage that had occupied the space. After the closet was empty, we began the fun part. We brought in a big bean bag, hung a clock and bulletin boards on the wall and added a small book rack. It was a perfect space and my son was smiling ear to ear.

I’m interested to see in the coming weeks if his new retreat becomes a place of comfort for him, if not, maybe I’ll need to sneak in there for a quiet moment of my own.


Saturday, August 7, 2010

Creativity

I’ve written a lot about my son’s mood disorder challenges, but today I’m proud to share one of his amazing talents.

My son is blessed with a creative mind, really he is. He’s like MacGyver when it comes to building stuff, give him some tape and string and watch what he creates. In fact, he uses so much tape that I have to stock up on it. And if there’s cardboard in our house, watch out!

Once, when my son wanted a DS game system, he built one out of cardboard and tape, with a flip screen and all. He also loves building multi-level forts out of everything in his room, one fort even had a built-in drinking system.

Another time, he took old playing cards and cut individual designs out of each one, bending the card to fold into unique 3D designs. Then there’s the legos, which he can spend hours with, but what impresses me the most is his attention to details, I always tell him he would make a great engineer someday.

It’s so fun to watch him get into that “builder mode”, you can see it in his face, he gets this intense, driven look on his face, experimenting as he creates his latest invention. This is when he truly seems his happiest. On several occasions, we’ve given him old electronics such as broken VCRs and cameras and hand him a screw driver and off he goes for hours dismantling it, then recreating something new. I think he has more fun creating things than actually playing with his finished pieces.

As much as my son faces pain brought on by his brain chemistry, I think his brain is extrodinary in so many other ways. I know that someday he’ll be able to use this creative talent to do something very special in the world, just as he’s doing today... with a whole lot of tape.

Thursday, August 5, 2010

Feeling Worthless

This week, my son came to me feeling worthless. This isn’t my interpretation, but my 9 year old actual said that he was “feeling worthless.”

When I asked if something had happened, he said, “No. I just feel like I don’t matter... like I’m a germ.”

I immediately hugged him until the feeling went away. Telling him how loved he is and how valuable he is to us. It was clear that this was a brain chemistry problem, not something he was reacting to.

This just breaks my heart, he’s so young and to feel such heavy emotions. Honestly, I don’t know if I’ve ever felt this way myself. I can understand feeling sad, but to feel worthless... it just makes me ache inside.

What amazes me is my son’s ability to communicate such feelings. I imagine that there are grown adults that can’t articulate internal pain the way he can. I pray that this gift will be his saving grace. If he can recognize when his brain chemistry is hurting him, he can seek help, just like he did this week.

The thought of my boy feeling worthless in the future terrifies me. Right now, I’m here with him, I can hug him and be by his side until the feeling passes. I can remind him that it’s just his brain not working right and that soon this all will pass. What happens when he’s older? When he’s living on his own? Will he be able to escape feeling worthless? Will these feelings make him hurt himself? Honestly, I can’t even type what really scares me, but I know that there are other moms that understand.

Are you one of them?

Monday, August 2, 2010

The Ocean Heals


This past weekend, we took the boys to the ocean for a day of fun. After a 3 hour drive, we unpacked the car and my son turned to me with a smile on his face and said, “I just know that I’m going to feel good today and not have my anger.”

There’s something magical about the ocean. My husband and I have always felt that the ocean heals the soul and seeing the look on my son’s face, I could tell it had the same affect on him. It was so fun to see him in his element, laughing with his brothers, digging in the sand and running through the waves.

This was an amazing day. A day where we could just be a family and where our souls could heal.