Sunday, January 30, 2011

Dad’s in Heaven with Nixon

Here’s another must see film!

Dad’s in Heaven with Nixon is a documentary directed by Tom Murray, who chronicles the struggles of his own family. His complex story of his brother with autism captures his mother’s strength and everlasting belief in her son as well as his father’s inability to accept his son’s disability.

As the story develops, through old family films and interviews, the revelation of bipolar disorder within the family takes the stage. Surrounded by complicated issues, his brother with autism demonstrates victory over his disability by living on his own, working 2 jobs and establishing a career in art. But more than anything, his ability to find joy in the simple things in life was just plain beautiful.

I found this documentary mesmerizing, heart breaking and simply inspiring.

* * *
Director: Tom Murray
Cast: Chris Murray
(I watched it on NetFlix!)

Video Source:

Uploaded on YouTube by  on Jul 9, 2010

Thursday, January 27, 2011

59% of Therapists Missed Bipolar Diagnosis

This week I read an article at About.com that reported the disturbing results of a study published in the Journal of Affective Disorders. They found that only 41% of psychotherapists correctly identified bipolar disorder even when symptoms of hypomania were present. (Purse, 2011)

That leaves over half of those living with bipolar disorder undiagnosed. That’s frightening considering that those incorrectly diagnosed are at a greater risk for the wrong medication and therapy. If a person with undiagnosed bipolar disorder is given an antidepressant only, mania can be induced with catastrophic results.

It’s no wonder that it takes up to 10 years or more for some to get a proper diagnosis. But what always bewilders me is that when parents read books about bipolar children, they see with clarity that their child fits this diagnosis. When parents share stories with those diagnosed with bipolar, their stories are identical, but when a parent goes to a therapist, all we hear is, “we just don’t know”.

Why is that? Seriously, why does it seem so crystal clear in books and support forums, but within the room of a therapist, it becomes so foggy. Are the books too matter of fact, not taking into consideration the children that aren’t bipolar but look it? Are the parents seeing the same symptoms, yet there are two illnesses that mimic one another? Is there a “bipolar copycat” illness that exists and isn’t yet defined?

Or, because children’s brains are still developing, it is possible for a child to outgrow bipolar illness? For example, if a 22 year old develops the illness as a young adult, their brain is too developed to outgrow it, thus making it a life long illness. But for some children that develop the illness while still young, their brain has the ability to “outgrow” the illness, or have a less severe disorder as an adult? Could this explain why it appears that there are more children with bipolar illness than there are adults living with it?

Or are therapists missing what’s obvious to us? Do they think parents make these symptoms up, so they are skeptical? I know our previous doctor was skeptical, she said “statistically your son does not have bipolar disorder because only 1% of the population have it”. My obvious response was that maybe he’s the 1%. But beyond that, could this statistic be making doctors hesitant to diagnosis bipolar symptoms as being a bipolar illness? In reality, is that statistic much higher?

I don’t have the answers obviously, but what are your thoughts?

* * *

You can read the full article below:
http://bipolar.about.com/b/2011/01/03/in-study-59-of-psychotherapists-missed-bipolar-diagnosis.htm?r=et

References:
About.com
In Study, 59% of Psychotherapists Missed Bipolar Diagnosis
By Marcia Purse

January 3, 2011
Consulted: January 27, 2011

Sunday, January 23, 2011

Sean Costello’s Life


The following is a guest post from another Mama! Her name is Deborah Costello Smith and this is her story about her talented son who struggled with bipolar disorder.

* * *

Sean Costello died on the eve of his 29th birthday. Anyone who knew Sean knows that he didn’t want to die; he just wanted to be able to rest.  As a child, Sean was beautiful (the word that people would use when they saw him), quick, funny and easy going, but he was also extremely, disablingly shy. He lacked a self-confidence that most never saw, nor could understand because of his achievements and talents. Generally, he only showed that to me, his mother. He had absolutely horrible handwriting, and couldn’t look you in the eye when he told you his name. Nonetheless, he was comfortable in certain situations: home, with his grandparents, and with children his age, and in costume, or on stage. He was usually the creator of play situations that drew the neighborhood to our back yard… the Renaissance, war, etc. For each of these scenarios, there was an authentic costume and complex roles. A day with Sean was never boring.

At home, he could be a different child, easily frustrated with multiple homework tasks, especially math. He understood it and could do it, but he would get visibly upset when facing a page of problems. He wrote stories and poems that went to county wide contests and that were well beyond his years (usually funny), but he often used a computer to turn them in… they would otherwise be illegible. He was often sick and complained that he had no friends in school. People who saw him on the playground witnessed a happy kid in the throes of play. The thing is, he always felt different.

The classic Sean story was a middle school field trip. He asked me to chaperone, but told me to “act like the other Moms. Act a little depressed!” My Northeastern ways were embarrassing to him in contrast to milder Southern ways. On the bus, he said “See Mom. See what I put up with.”  The kids were singing 99 Bottles of Beer on the Wall. He was listening to Bob Dylan (whom I cannot to this day understand). The thing is Sean was different. Different in ways that were wonderful, but totally confusing to him. Depression, panic attacks, difficulties with sleep, frustration with certain subjects and occasional outbreaks of exaggerated anger, all challenged the family.  

Sean went on to become a renown Blues musician with international recognition for his talent, and a universally recognized humility and generosity. He was not diagnosed as being Bipolar Type II until the year before he died, despite 16 years of mental health consultation and treatment. Sean learned to manage his challenges by self-medicating, something easy to do in the world of music and common to bipolar disorder. There are some morals to his story… (1) being and thinking uniquely is often a gift to the world and not something to be ashamed of. Sean learned to be proud of his uniqueness; (2) being different comes with a price in a child’s world, where differences are often discouraged in a classroom and possibly mocked by other children (Sean found his place in a performing arts school); (3) the diagnosis of bipolar disorder is too often missed with severe consequences; and (4) families become exhausted trying to support the child whom they love, but who has moods that seem to have no cause.

Sean was blessed with a talent that allowed him acceptance of others and a way to express himself that circumvented his shyness. On stage, he transformed. He found a way to be comfortable with the guitar as a form of protection, a costume that was a shield for his insecurities. He lived a life of success, adventure, love and passion. All of those things are possible with Bipolar Disorder. For sure, his moods gave him access to emotions that resonated with his audiences and served as a vehicle of release for him. Yet, he lived with anxiety, panic attacks, depression and concomitant addictions. The story could have a different ending with early diagnosis and effective treatment. If The Sean Costello Memorial Fund for Bipolar Research realizes its mission, other children will live with hope, as they understand the way that their “differentness” can be a gift and that extremes of moods can be controlled. Families will be armed with knowledge and support. The other Seans of the world will be able to have a long and healthy future.

* * *


Listen to Sean’s Music:



Show your love and support by leaving your comments to Deborah below!

Saturday, January 22, 2011

The Walk of Shame

Today we had to do the walk of shame. It seems every time we go to a public park, my son seems to have an incident of some sort. Sometimes he’s the guilty party, but other times he’s the one bothered to the point where he overreacts, causing some parent to scold him. It seems that it’s inevitable that while I sit on the park bench, trying to keep an eye on my three boys running in three different directions, I’ll hear a parent in a not so friendly tone say, “The kid in the black shirt?” then I immediately feel the dread that follows, because... it’s my kid in the black shirt.

Today’s incident was one of those times where it was both of the kids bothering each other, the woman even admitted to seeing only part of the incident. But the mother was on top of him, wanting to scold him more than once. When we tried to explain that her son was threatening my son and wouldn’t leave him alone, this mom preached to my son that their age difference alone was enough for him to handle it differently.

I agree, but for my son it isn’t so. I wanted to explain that my son doesn’t have the restraint of a 10 year old, that he’s very sensitive and has a hard time not reacting to repetitive badgering by her son, but instead, I didn’t say anything. I know she can’t understand, I know I’m already seen as the inferior parent on the playground yard. I’m the parent that all the other parents are scowling at.

So instead, I stood my ground and turned to my son who had tears in his eyes and said, “Don’t worry son, she didn’t see the whole incident, I believe you.”

Then we took the walk of shame with our heads held high.


Thursday, January 20, 2011

Sometimes We Laugh!

This week, my son and I have been pretty sick with strep throat. I always forget how bad I feel with strep throat and thanks to having young kids, I get to remember at least once a year. It’s unfortunate for my family because once I get sick, I’m pretty much useless for several days. But thankfully, I have an awesome husband that steps in and takes care of us all. He’s been cooking, running errands and taking care of the other healthy kids. He’s pretty much been Mister Mom!

Yesterday he went to pick up our youngest son from kindergarten. Our little one was so excited to see his daddy at school that he ran up and gave him a big squeeze hug around the legs. Just then, my husband realized the true results of his recent weight loss when his sweatpants dropped to his knees. As life would have it, he was standing in front of a crowd of waiting parents. Thanks to my son’s vice grip hug, it took more than a moment to pull his pants back up. I guess you can say we’re all relieved that daddy didn’t go commando!

Sometimes... life is just funny.

Wednesday, January 19, 2011

A Creative Resource

I found this PDF book online that does a great job of simply explaining a mood disorder. It’s perfect for kids to read and understand, maybe share it with the whole family and relatives outside the home so they can get a better understanding of mood disorders without reading a large volume.

What really impressed me was that the book used illustrations created by kids who suffer with the illness. I think the art alone does an amazing job of expressing what they’re going through. Please check it out at the following link, I think you’ll be very impressed!

http://www.dbsalliance.org/pdfs/storm.pdf


Sunday, January 16, 2011

Turning the Corner

Well today we’ve turned the corner. Our son has returned to his normal self, you can see it in his smile. He’s been polite, very aware of his limits and asking for help when he needs it. He also greets me with a big, happy hug whenever I return home.

I think we just witnessed a complete cycle of moods. I don’t know if they’ll present themselves like this in the future or if it was just a single incident, but I’m curious if we’ll see this pattern again. It all started last week with him feeling sadness at night for a few days, then anger the next day, followed by a mix of feelings that just confused him. Yesterday, he came up to me crying and before I could respond, he started cracking up and laughing out loud. Then he returned to his normal self with no explanation for his mood shifts.

Today, he’s back to his normal, sweet self. It was like a tornado of emotions, scary to watch, I can’t imagine what it must be like for him to live. During his entire cycle of moods we tried to remain very calm, act as if this happens everyday, reminding him that his brain was making lots of mistakes and soon he would feel good again.

The day after his episode of anger, we spent a little time addressing what happened and discussed solutions for the future that will help him get control back. I think for us, getting him to take a hot shower is our best shot of calming him down, along with me keeping my mouth shut. The more I talk, the more things escalate.

That seems easy enough, but when he wants to hurt us, both of those solutions are pretty hard to do, but we’re going to give it a try. We’re hoping that as he gets older he’ll get better at recognizing his mood shifts and taking steps to control it, but I know that we’re at the beginning stages and it’s going to take a lot of practice to master.

We also have to recognize that his anger is part of his illness, there will be times when we have to wait it out and if it gets out of our control, we’ll need to add another medication. But for now, it’s baby steps...

I can say that today during a playdate he asked if I would send his friend home because he could feel his anger coming on. I did exactly that and my son was able to relax again, with no explosive behavior. That I feel is a step in the right direction!

* * *

For those that recognize their child’s cycles of behavior, does it typically appear in a group over several days? Does it usually start with the same symptom (like depression)? Have you figured out any patterns with your child’s mood shifts? I would love to know!

Friday, January 14, 2011

Anger Reared its Ugly Head

Last night was very promising, my son and I went to the gym, then went out for some fun quality time. We had a great time together. But that all changed after coming home.

After my son finished his dinner, he realized that he forgot to sit next to me during dinner, then his mood drastically changed.

I tried to distract him by having him eat dessert next to me, but once we tried to get him up to bed, things started to escalate. He started hiding under furniture. I asked him what he was doing, he said, “I don’t know” in a very grumpy tone.

From there, things continued to escalate. It wasn’t long until he was screaming that he needed to hurt someone, then he started to kick me. He also ran to the kitchen drawer, but all he could find was a pie server to threaten me with. (All sharp stuff is locked up)

We then tried to encourage him to take a hot shower to help him calm down, but once upstairs he hit me with a toy, that’s where dad stepped in and took the role of keeping him in his room to keep the rest of us safe.

During this time my husband was beat up with flying objects and flying punches from my son. At one point, my son jumped onto my husband’s back, that isn’t easy being that he’s 6'3".

In the other room, his younger brothers were crying in their beds, scared from all the screaming and crashing noises they heard from the room next door. I stayed in the room with them to help them feel safe as we all cuddled under the blanket in one bed while I quietly read The Gingerbread man.

All I could think of was... to my little boys, is this experience any different than being raised in a home where a man is abusing his wife? What will this exposure do to them? Can I make them feel safe enough? My youngest is crying and my middle child has a tummy ache brought on from the anxiety he was feeling from his brother. My heart is breaking...

After it’s all over, my son finally takes that hot shower. Then when being put to bed he said he had a feeling like he needed to do something, but didn’t know what, that his feelings kept changing from happy, to sad, to angry. Then he drifted off to sleep.

We stayed upstairs until he was asleep to make sure everyone was safe. I never felt like I was unsafe, but I did recognize that if he was 16 instead of 10 years old, I would have been very scared.

Have you had these feelings? For those with older kids, do you ever feel unsafe during these rages?


Wednesday, January 12, 2011

My Flesh and Blood



Last night, my husband and I watched an award winning documentary on Netflix called My Flesh and Blood. This documentary was about Susan Tom, an amazing woman who adopted 11 special needs children. All of the children have different conditions, requiring very individualized care from surgeries, therapies and bleach baths to their complex emotional needs. It’s hard not to be inspired as you watch Susan open up her heart and home to these children, while making personal sacrifices along the way.

One child’s story was particularly hard to watch. He has cystic fibrosis and ADHD. There were obvious moments where he was struggling with a lot of anger, something you may relate to with your own child. To see how his mental illness impacted all the other children was tragic yet familiar.

Then there were moments that made me laugh out loud, watching the silliness and courage to embrace humor in the face of such challenges. And other moments that made me cry.

But the radiant spirit these kids have after all they’ve been through was beautiful and inspirational, reminding me of mankind’s incredible ability to be resilient and overcome what seems impossible.

* * *

A little more about Susan Tom:

In 2003, Susan Tom was nominated “The Most Inspirational Person of the Year”
(She lost to Archbishop Joseph O’Malley)


In the same year, she won “The Most Inspirational Woman of the Year”


With the help of two friends she estabilished the “Susan Tom Family Foundation” to educated the public about various disease that affect children.


In 2005, Extreme Makeover: Home Edition built Susan and her family a new house.

Source:  http://en.wikipedia.org/wiki/Susan_Tom

Video Source:
Uploaded on YouTube by  on Mar 18, 2008

* * *

Interview with Susan Tom, 5 years after the Home Makeover:



Video Source:
KXTV News 10, Apr 9, 2010
by Nick Monacelli



Monday, January 10, 2011

A Watchdog that Attacks

If you saw my last post, you saw a video by CCHR Int., an organization created by Scientologists that are speaking out against psychiatry. They claim to be a mental health watchdog, yet they appear to be attacking those who are already suffering. They have created many videos, the most recent a campaign to spread the word that psychiatry labels on kids are bogus. They show images of kids with psychiatric labels on their t-shirts with sad faces, then a burst of uplifting music comes in as these labels are ripped off to reveal new words such as “Leader” (under oppositional defiant disorder), “Activist” (under anxiety disorder) and “Artist’ (under bipolar disorder).

Now I don’t argue that kids with these labels can also be leaders, activist or artists, but you can’t dismiss that they have a real illness. To say that a child that throws chairs through walls and becomes paralyzed by their sadness and thoughts of suicide is just an “artist” or that a child that can’t have fun with other children because their social anxiety has them so sick they vomit is just an “activist” is ludicrous.

CCHR Int. seems to simplify symptoms when explaining how labels are diagnosed. Here is an example of that on their website:
For example, If an adolescent is strong willed, this is redefined as “oppositional defiant disorder.” If a kid acts like a kid, sometimes losing pencils or toys, or acting “on the go” then this has been pathologized into “ADHD.” If a teenager has normal adolescent mood swings, then this has been repackaged as “bi-polar disorder.” And shyness? Doesn’t exist. It is now called “social anxiety disorder.” Moreover, once labeled, these kids are stigmatized for life. [1]
CCHR claims on their website that they created this video to dispute NAMI’s (National Alliance on Mental Illness) campaign “To Stop the Stigma of Mental Illness”. [2] They claim that these labels are bogus and were created to allow the pharmaceutical industry to maintain their hold on the $84 billion dollar-a-year psychiatric drug industry that is based on marketing and not science. [3]

From my own experience, regarding psychiatry labels, getting a “label” to diagnosis your child’s mental illness is extremely hard, if not impossible. I’ve been told more than once by doctors that they won’t diagnosis my son since he’s so young, even if he has the symptoms. It is my experience that the mental health system is very careful with labels and I’ve been warned that it could take up to 10 years to get a diagnosis. I also find that doctors are careful to give labels because they themselves are concerned with the stigma that goes with it and want to treat the child without making their life any harder.

I wish that I could show this organization what mental illness really looks like. That they could see the look in my son’s eyes change, as the chemistry in his brain changes. That they could see my son crying in pain because something is wrong with his brain. To see him suffer after a rage because once the rage is over, he realizes all the damage he’s caused and knows that he can’t stop it because the bad side of his brain takes over. To see him terrified because he saw visions of a monster in his room and a man outside our house with a gun. To see him isolated from kids because his social anxieties make it hard to make friends. To see him cry because the restaurant is too loud and the store is too crowded on a fun family outing. To see the self hatred he feels as depression kicks in, making him feel worthless. To see my precious child cry out that he doesn’t want to live anymore.

I also wish they could see the smile on my son’s face when he started to take a mood stabilizer and how he said he felt “happiness” inside for the first time in months. How medication is giving my son a chance to be a leader, an activist, an artist or anything else he desires. How medication is giving my son an opportunity to have a good life.

I truly wish this organization knew what it’s like to have a child with a real mental illness and would use all their abundant resources to support research, so that one day we’d have better ways of diagnosing our children and better yet, a cure.



References:
Citizens Commission on Human Rights International
Campaign to “Stop the Stigma” of Mental Illness—Is a Pharmaceutical Marketing Campaign
December 20, 2010

Citizens Commission on Human Rights International
Psychiatric Disorders: The Facts Behind the Billion Dollar Marketing Campaign
Consulted: January 10, 2011

Thursday, January 6, 2011

A Dangerous Video

http://youtu.be/n3JQ8OVHVWA

If you don’t mind getting a little fired up, watch the video above. I have to say that my ears are burning and I’m feeling pretty upset by this. In this video, they try and make the claim that mental illness is not a disease because you can’t test for it like you can cancer or diabetes. You can’t take a blood test or brain scan for depression or schizophrenia, therefore, it’s not a physical disease.

It seems like pretty simple logic, that is if you believe that scientists have figured out the entire human body and every disease that exists. But they haven’t. If this was the case, then years ago, before they were able to diagnosis cancer in the human body with an MRI, you would have to argue that cancer didn’t exist. You would also have to support the claim that diabetes didn’t exist before a blood test could confirm it. But we know this isn’t true. Cancer was present long before the MRI could see it.

In fact, in ancient Egypt, people believed the gods made cancer and for 1400 years people believed that cancer was caused by an excess of black bile because Hippocrates said so. It wasn’t until the 20th century that better means of diagnosis were discovered. (Fayed, 2009)

Unfortunately for my child, science doesn’t have mental illness figured out yet, though I believe they will someday, right now they’re looking into genes and brain scans. But in the meantime, I don’t deny that my child has a disease and I’ve witnessed first hand how medication has improved his life. Something diet and exercise couldn’t even touch.

And just so we’re clear, I’m not talking about making my kid focus more or not lose stuff or stop him from talking too much. No, I’m talking about removing depression, violent rages, hearing voices, seeing monsters, calming debilitating anxieties and stopping suicidal thoughts. I’m talking about saving my child from a real brain disease that science still needs to completely understand, unfortunately, we can’t wait for a cure or even a blood test, we have to work with what treatment is available today.

It’s really hurtful to see these messages being put out there. If you know anything about childhood mental illness, the examples they gave with their “check boxes” are insulting. There’s enough stigma in the world about mental illness, the last thing our kids need is for their illness to be viewed as imaginary.

What are your thoughts? Really, I would love to know!

* * *

If you are wondering where this video came from, it’s from the Citizens Commission on Human Rights (CCHR) which was established in 1969 by the Church of Scientology in Los Angeles CA.
Video Uploaded on You Tube by CCHRInt on Apr 26, 2009

Here is what Wikipedia has to say about them:
http://en.wikipedia.org/wiki/Citizens_Commission_on_Human_Rights

References:
About.com
The History of Cancer
By Lisa Fayed
http://cancer.about.com/od/historyofcancer/a/cancerhistory.htm
Updated: July 8, 2009
Consulted: January 6, 2011

Video Source:
Uploaded on YouTube by  on Apr 26, 2009

Monday, January 3, 2011

We Won!!!

I’m so excited to share with you that The Child and Adolescent Bipolar Foundation finished in 2nd place, winning a $250,000 grant in the Pepsi Refresh Project. What I’m more excited about is all the positive things that will come out of this. One thing I’m looking forward to is the weekly podcasts that CABF will produce. I’m a huge fan of podcasting and to have one that addresses my family’s specific needs every week is so exciting!

Thank you so much for taking the time to vote, this grant is going to make a difference for so many families and even more importantly, our kids.

 Let’s celebrate by doing a happy dance...

Sunday, January 2, 2011

Reflection and Anticipation

I’m so excited to start 2011. This past year was very tough in many ways. But I honestly feel this is our year to pick ourselves back up.

It was over 4 years ago when we moved into our new home in our new town. This was a decision that we made after two years of praying to God about where we should move to escape our home that had become surrounded by gang activity and crimes. I remember begging God to give us an answer after a neighbor was shot and killed while out to dinner with his wife.

Then in 2006, we received that answer in a way that was undeniable to us. While visiting a model home in a nearby city, my husband heard the voice of God telling him to move here, that this is where God wanted us. Now I know to many, this may sound ridiculous, but to us it was as real as the sun in the sky. There was only one other time that my husband felt such strong direction from God.

Now the model home we were standing in had been under contract with 3 separate buyers, but all of them fell through at the last minute, making the home available again. I remember the saleswoman calling me in disbelief and telling me that this house was meant to be ours since it had fallen out of contract again.

After feeling God’s direction to buy the house, we gave the saleswoman a check and once in the car my husband said, “Now all we have to do is sell our home, but I’m not worried, God has it under control.”

The very next day, the city asked if they could purchase our home since they wanted to own it for easement rights on a city sewer project. They also offered to pay for all expenses involved. So we were on our way, to what was to be bigger and better things.

Then life happened.

My husband lost his job as the economy started to turn, we were now like so many others who were upside down on their home and couldn’t sell it if they wanted to. Even though we were blessed to get a new job, the pay was now reflecting the changing economy, while my own home business dropped to almost nothing. Then there was the start of my son’s illness, followed by a car accident and a list of other painful challenges. Through all of this my heart has ached like never before, I’ve cried a river of tears. My husband and I even joke about how much we’ve aged in these few short years.

But God provided for us and held us together. I won’t lie to you and say that I never questioned the decision to come here. There were times when I thought to myself... what if we never moved here, what if we had a different job in a different city or what if this house is cursed, bringing us our bad luck?

But I know that is foolish thinking. Instead, I accept our trials, I don’t think God put us here to suffer, but I do believe he has used our challenges to help us mature as Christians. I also believe that God knew what challenges lay ahead and placed us where our needs could be met. I can now look back and see how God has held us up through so much, how He has been faithful to us and how He has loved us.

He has surrounded us with family to support us, something we would’ve been without had we moved across the country and He has provided my husband with a great job. After 2 1/2 years of waiting, He has blessed us with a home modification so we can stay in our home. He has placed us in a local church that has a heart for families who have children with illnesses, giving us support and understanding that is hard to find. He has blessed us with medical insurance and access to great doctors. He has even blessed us with trained neighbors, one who is an EMT and the other a brain trauma nurse, that can be called upon whenever needed and have been more than once. All while giving us a safe place to raise our kids away from gang violence.

So when I think back to that day when we followed God’s direction to move here, I don’t feel regret, but victory that God has showed us His great love through the restoration of our life. That we’ve been dragged through the mud by life and stand here today with a spirit of hope a anticipation for the year ahead.

Ok 2011, let’s do this!

* * *

I know many of you reading this today may not be in a good place, in fact I’m sure my words may sting a bit, but I just want to encourage you and say, don’t give up hope.

“For I know the plans I have for you,” declares the Lord. “plans to prosper you and not harm you, plans to give you hope and a future.” Jermemiah 29:11