Thursday, April 28, 2011

Carly’s Voice



Even though my blog is about mood disorders, I couldn’t pass up the opportunity to share this amazing video with you. It’s about a girl who’s been unable to communicate due to her severe autism. At one point during her teen years, she sat at a computer for the first time and began to type out words. Since then, she’s been able to communicate with her parents in a way they can finally understand, for them, it was like meeting her for the first time. She is smart, witty and pretty much like any other teenage girl.

This story is heart warming and encouraging. She proves to the world that we have so much more to learn about autism and other brain disorders. I was moved by this story especially when she explained the reason for her behaviors and how even though she knows the difference between right and wrong, she has a fight in her brain over it, it made me think of my own son and how misunderstood he is.

If there was one thing she would share about autism it is, “I don’t want to be this way, but I am. Don’t be mad, be understanding.”

Another comment she made really struck a chord with me after the events of my last post, Dear Neighborhood Mom. Carly says, “I am autistic, but that is not who I am, take time to know me, before you judge me.”

You won’t regret watching this story, I know it’s long, but it’s well worth your time!

Check out Carly’s website where she communicates with the world:
http://carlysvoice.com/

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Video Source:
Uploaded on YouTube by  on Aug 18, 2009


Tuesday, April 26, 2011

Dear Neighborhood Mom,

I need to vent after an incident in our neighborhood, so I’m writing this letter to the mother who’s breaking my son’s heart.

* * *


Dear Neighborhood Mom,


You smile at me and give me sweet pleasantries. You talk about how we need to get our kids together and how much fun we’ll have taking them on a walk. You tell my son that you’re looking forward to our play date and tell me when to call you.

Then you ignored my calls. I know this because today your daughter told my son at school, “When you called at the time of our play date my Mom said we were not going to answer it, we were ignoring it because it was just Mama Bear calling for a play date”. 


Then your daughter tells my son, “Even though we’re friends at school, my Mom said that I can’t play with you because you’re making me someone that I’m not.”

This follows a previous incident where your daughter told my son, “My mom said that I can’t play with you or anyone else in your family.” When I asked you about this, you told me that this was a misunderstanding between you and your daughter that happened after my son shared he had an ‘anger problem’ and saw a psychiatrist. You denied that you had a problem with my son and encouraged me to get the kids together.

In case you didn’t know, you’re daughter tells my son everything you say about us and you’re breaking his heart with your judgmental words.

When you scheduled a play date with my son, then screened our calls to avoid us, you destroyed a piece of him. What you may not realize is that he was looking forward to this play date more than he was Easter, he talked about it for 3 days straight, even told his Grandpa about how excited he was to see your daughter.

My son has caused your child no harm, he’s been a true friend. 

Unfortunately, your daughter is my son’s best friend, maybe his only friend.

If you only knew how much your actions hurt. If you only knew that my son’s sense of value dropped after he heard about this botched play date. He believes that he’s “weird” and that you hate him. He believes that you think he’s worthless and not good enough to be your child’s friend. You’re actions make it hard to believe different.

I see you waving at me in the carpool, smiling as if you like me and it makes me sick because I know what you really think. 

I wish I could scream at you and tell you how much you’re hurting my son, how much your fake pleasantries are just leading him on, stepping all over his hopes. I wish I could tell you that your actions will cause damage for years to come, confirming that he isn’t good enough for a friend.  I wish I could tell you that as precious as your daughter is to you, my son is to me. My son deserves to have a friend, please, I beg you, stop breaking my boy’s heart.

— Mama Bear 

(exhaling slowly)

Monday, April 25, 2011

Way to Go Demi Lovato!

A shout-out goes to Demi Lovato who announced to the world that she too is struggling with Bipolar Disorder in an interview with ABC’s 20/20 and People magazine. If you’re like me, you may be clueless as to who she is, but thanks to google I can fill you in. She’s a Disney star with a pop music career and her own tv show, Sonny with a Chance, and has been following the footsteps of Miley Cyrus and Selena Gomez. I’m sure if you asked your kids, they would recognize her.

In an interview with People magazine, Demi shared that after seeking treatment for her eating disorder, depression and self-harming, cutting behavior, she found out that she has bipolar disorder.

“In reality, I’m a teenage girl with real issues, and I needed to address them”... No matter how tough it gets, “I’m determined to fight this,” says Lovato, who also hopes that by opening up about her “darkest hour” she can reach those battling similar demons. (People, May 2, 2011, p. 82)

At the young age of 18, she’s decided to share her story with the world. With so many young teens secretly battling these very issues, I’m so happy to see a young public role model open up and share how she regained her life back after in-patient treatment, medication and therapy.

Way to go Demi Lovato!!! 

* * *

You can read about her story in the latest issue of People magazine where Catherine Zeta-Jones is on the cover sharing her private struggle with Bipolar Disorder.
May 2, 2011 issue

Link to 20/20 Interview shown above:
http://abcnews.go.com/2020/video/demi-lovato-turmoil-teen-star-disney-2020-13440850

* * *

References: 
People 
Sharon Cotliar 
May 2, 2011

Video Source:

ABC News
Consulted: April 25, 2011

Friday, April 22, 2011

Call Me Anna: Patty Duke and Bipolar Illness

I just finished reading Patty Duke’s autobiography Call Me Anna. This was another book my son’s therapist thought I should read. I thought it was very facinating. It didn’t focus on her bipolar illness, yet she shared many personal details on how it affected her life and the decisions she made. Instead, the book covered her entire life from the unique acting coaches she had and the abuse she suffered at their hands to her acting career and adult relationships. It was really interesting to hear about her journey as a child actor and how her mother’s own mental illness affected her upbringing. She shared her suicide attempts, as well as her manic episodes, one which led her to marry a complete stranger. Towards the end of the book, she hears from her doctor for the first time that she’s bipolar. In sharing her relief to finally have a medical diagnosis for what she’s been experiencing she writes:

“From that moment on, I wasn’t frightened at all. It was such a relief, almost like a miracle, really, for someone to give what I’d gone through a name and a treatment... The odd thing is, when I was a kid and had those panic attacks, usually related to dying, I used to pray for a pill. I’d say to myself, ‘There must be a pill. There’s a pill for everything. There must be a pill for this.’ It turns out there was.” (Duke & Turan, 1987, p. 287)


If there ever was an example of why it’s so important for those suffering with mental illness to receive a diagnosis, I think this is it.

* * *

Video Source:
Uploaded on YouTube by  on Dec 16, 2009 (Sally Jessy Raphael)
Uploaded on YouTube by  on Dec 6, 2009 (wins award)

References:

Call Me Anna: The Autobiography of Patty Duke
Patty Duke and Kenneth Turan
1987

Tuesday, April 19, 2011

Surviving Spring Break

We’re in the middle of spring break and things are going ok. Like many kids, my son struggles with the boredom of being out of school, so we’re trying to keep him busy and stress-free. With our long days together, I’m practicing a new parenting skill I’m trying to acquire. I distract him when he approaches the “edge of frustration” as a way of keeping him calm. It’s something my husband does pretty well and I’m trying to get better at. Basically, I approach my son when I can see the “steam” rising from him and try to speak calmly as I suggest doing something different to help distract him. Sometimes, I’ll offer watching tv together or cooking together, other times I suggest something unique like shopping for music on itunes, hoping to entice him into focusing on something different than what he’s currently upset about.

In the past, I spent too much time trying to resolve the current stressor, whether it was working out a disagreement with his brothers or talking him out of doing something mean. What I’m learning is that there’s a lot of situations that can best be dealt with by ignoring the issue and moving forward with something new. This seems to be the key of deescalating the situation. Unfortunately, it doesn’t come natural for me.

The other strategy I’m trying is the “path of least resistance”. Yesterday, he really got angry because his brothers didn’t want to play anymore. In an instant, he charged his brother in full attack mode, it came out of nowhere. As I held him on the couch, I could tell he was gearing up for a rage, so I let go and asked if he would just sit on the couch. He barked back, “Can I watch TV”. I said, “ Yes, take this time to calm yourself down.”

Then I had everyone go upstairs so we could leave him alone to cool off for about 45 minutes. It was much easier than trying to get him into his own room. I could tell that if I pushed him into a timeout I would’ve triggered a rage, so I simply took the path of least resistance. And I’m happy to say, he was able to calm himself down.

Overall we’re getting by with great times followed by challenges. He’s surprisingly has handled some stressful situations pretty well, on the other hand, spending so many hours together can be draining on us both. I know this isn’t his fault, life is just harder on him, but I need to work on my patience and keep my chin up.

* * *

So how’s your vacation going?

Monday, April 18, 2011

Keeping a Watchful Eye

If you read my post Scary Noises, you may recall that my son was starting to struggle. After experiencing the noises and anxiety at school we stared to see some sadness return, then a small amount of anger and impulsivity with a little cycling. Most of these symptoms lasted for a very short period and didn’t occur that often. Our concern was that they were occurring at all.

Then he had a day where he became upset and started violently hitting himself on the head with a large heavy book and hitting his body with a plastic sword. While trying to calm him down, I asked him why he was doing this, his response was, “I don’t know, I just need to hurt myself”. After a few minutes he was back to normal.

This was the first time we’ve seen him trying to hurt himself instead of trying to hurt others. I don’t know if this was his way of trying not to rage against us, or if this was a new thing all together. Either way it concerned me so we went to his psychiatrist the next day.

At our appointment, our psychiatrist didn’t seem too concerned about any of his symptoms, he just said that they don’t know why this happens and that time will only tell if this is truly a bipolar disorder or just depression and anxiety. When he asked my son how he’s been, my son said, “I feel sad, like all the time.” Having recognized that my son was having cycling moods, The doctor wanted to avoid putting him on an antidepressant. (Treating bipolar children with an antidepressant can have very dangerous results).

So in order to address his depressed feelings, he suggested adding Lamictal to his current treatment of Trileptal and Tenex. Lamictal is an anticonvulsant, just like Trileptal. It’s used in bipolar children as a mood stabilizer. It’s good for treating rapid-cycling and mixed bipolar states and helps a lot with the depressed state of bipolar disorder. (Papolos, M.D., Papolos 2006, p. 99)

The down side of this medication is the rare risk of having the Stevens-Johnson syndrome or the more deadly toxic epidermal necrolysis. These are severe and sometimes fatal allergic reactions to this medication. (Papolos, M.D., Papolos 2006, p. 99)  It was disappointing to hear our psychiatrist say that this was the most benign direction we could take.

With my son already on the max does of one anti-seizure med, Trileptal, our psychiatrist said that adding a second anti-convulsant would increase these risks.

Considering the short episodes of symptoms, our psychiatrist felt it was best to watch and see if he gets worse or better. With him recently having a virus, it may be possible that the symptoms are a result of his body being sick, or it could be the illness itself in the depressed phase, or the winter weather making his symptoms worse, heck it could be the result of all of the above. But our doctor felt that we had some room to see how the spring weather effects him, if we see an improvement overall it won’t be necessary to add a new medication just yet.

I know some may be thinking that we’re foolish for not addressing these symptoms with meds today, but we have to take these medications seriously. My dear uncle had the Stevens Johnson rash from his anti-convulsent medication during his cancer treatment. It was more than a rash, the worst thing for him was his throat swelling up and cutting off his breathing abilities. His face and lips were swollen and he developed big blisters all over his chest, back, face and head. My own mother almost died while on vacation in Hawaii when her anticonvulsant (taken for seziures) brought on kidney failure, which happen to be a side effect that affects only 1% of the population. So I’m well aware of the risks that are involved and have to weigh them with the current state of my son.

There’s no way of knowing if this is the right decision or not, only the future will tell. But today I’m happy to say that my son has been doing much better. He’s happier, more engaged with the family than he was a few weeks ago. He has his rough moments, but they aren’t constant. Currently, we are carefully monitoring his feelings of depression while trying to keep him stress free as possible. But if things get worse, we’ll need to address it with more medication.

This is what is so challenging for us parents. There are no right answers. I wish our doctor could tell us the best decision based on statistics and research, but as he told me, we just don’t know enough about it.

Only time will tell.


* * *

Do you have any experience with your child being treated with Lamictal or being on two mood stabilizers at the same time?


* * *

References:
The Bipolar Child
Demitri Papolos, M.D. Janice Papolos
2006

Friday, April 15, 2011

Bravo Catherine Zeta-Jones!




If you haven’t already heard in the news or blog world this week, a rep for Catherine Zeta-Jones confirmed that the actress sought treatment in a mental facility to treat her Bipolar II Disorder. We don’t really know the details of her condition and I acknowledge that she may have been pushed to share this personal part of her life after paparazzi revealed that she checked herself into the hospital. But I still think that she deserves a standing ovation for showing the world that a classy, beautiful woman can be living a successful life managing her disorder. I think so many people get their view of what this disorder is all about after they see a person hitting rock bottom and acting outrageous. It was a brave step to take on her behalf, but I think it will do wonders in helping the world understand that this is just an illness in the body, like cancer or diabetes and that you can live a responsible, successful life with this disorder.

Bravo Catherine Zeta-Jones!


Watch the clip above to see how The Today Show used this announcement as an opportunity to teach people about Bipolar Disorder and address the negative stigma around it. It’s good stuff!


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Video Source:
http://today.msnbc.msn.com/id/42589427

Thursday, April 14, 2011

Speechless...

I took the kids to the park this week to enjoy some needed sunshine. Within minutes, a girl who was about 8 years old showed up. This was disappointing since the last two times we were at the park this same girl has made it a point to provoke my son with her deceitful tattling and smirks back to my son. So immediately, I told all my kids to stay clear, it was obvious that she was having fun pushing my son’s buttons, then telling on him.

After about 10 minutes of trying to get a rise out of my kids, she went to her mother to tell on my son, pointing him out as being the mean kid. Even though, I was carefully monitoring the situation, keeping my son away from her and trying to teach him how to cope with the situation, she still tattled.

As expected, all her taunting was increasing my son’s intensity. Every time she stuck her tongue out or gave the “slice your throat” signal to my son, I would hold him back. It felt like having an attack dog on a leash who was barking at the chance to attack.

About a minute later, it appeared they were leaving the park, whew! At that moment, another parent approached me and said that they too have had a problem with the same girl being mean to her kids. As I listened to their story, I glanced back over my shoulder to see my son, running full speed across the park to this girl and her family. Unfortunately, he was at quite a distance when I screamed out his name and saw him give a swift kick to the girl, right in front of her mother! I was too far away to hear what was said or see any reactions on their faces, but I was speechless.

He quickly retreated back towards me, falling to the ground about halfway back, exhausted from his quick sprint. The family, probably in shock, quickly left. I just shook my head, feeling once again defeated, completely mortified and embarrassed.

Why does this have to be so hard?

Why can’t we enjoy some damn sunshine!

I can’t even imagine what the parents behind me were thinking, let alone the mother who saw her own child kicked in front of her. My son was lucky she walked away, I don’t know that I would’ve been so kind.

As my son laid on the ground trying to catch his breath, my 8 year old fell to the ground sobbing because he was afraid my son was going to be arrested. Apparently, this girl told my kids earlier that her dad was a cop and that he could arrest them.

It’s always so easy to look back in hindsight and think... we should’ve left earlier, I should’ve talked to the other mother, I should’ve avoided the park altogether. These solutions would be so much easier if I wasn’t dealing with a handful of other kids. I had my two other boys and two children I was babysitting with me and they really needed some sunshine. I constantly feel torn between doing what’s best for my son and doing what’s best for the other kids. Sometimes, I’m able to walk the balancing act with everyone happy at the end of the day and other times I’m left... speechless.

Tuesday, April 12, 2011

It Takes a Village

Last Friday I got an unexpected call from a mom who’s son is in my son’s class. It was unexpected because our relationship has deteriorated over the years. There was a time when our son was invited to their birthday parties and our family was invited to their big Christmas party, but as my son started to develop social anxieties, these types of relationships slowly vanished. He use to love playing with this child, but overtime, playing with boys who loved sports and liked to run in packs became too stressful for him. Eventually he has found friends in girls, where the whole “alpha male” aspect doesn’t exist. The problem there is that these girls like to have a new friend every week, so he’s completely dependent on them approaching him. When they move on, he’s left alone.

This mom was calling out of great concern for my son. She said that she has worked in the school twice over the last two weeks and both times she has seen my son looking sad and all alone during recess. She said, “It was more than him being upset, it was his whole body language, he looked depressed.”

She said that she saw him standing alone against the fence with his head down and shoulders hunched over. She shared with a very delicate, loving approach how worried she was for him and wanted to let me know about it in case something was going on at school that I may not know about.

I listened carefully as my mind searched for the right answers. While at the same time, feeling sad for my son and concerned that his struggles are becoming more obvious at school.

What do I say?

How do I explain what’s going on without exposing my son to rejection? 

Which, by the way, we faced when he lost his best friend a few years back after they found out about his illness.

My heart raced and I felt nervous inside. I knew that this woman truly cared about my son. But I care about protecting my son more.

So I didn’t tell her the whole truth of what was going on, instead I was very vague.

I used words like “struggle” and avoided words like “disorder”. There was no mention of therapists and medication, instead, I explained that it was harder for him to socialize and that he was better with kids one-on-one. I explained that what she saw at school was something that he was dealing with internally and not a result of something that had happened at school.

I could tell she was concerned that I didn’t realize the severity of the situation when she followed with questions like, “Have you contacted your pediatrician?” and “Can the school help your son?” I explained that yes we’ve discussed it with his doctor and they were helping us and that the school has been great too. I explained that as he gets older we hope social situations will only get better.

With a sincere heart she shared how sad she felt seeing my son today and asked if there was anything she could do to help.

Snagging the opportunity I said, “Yes! Maybe we can get the boys together this summer to play. I explained that the more time he had playing with kids one-on-one, the more comfortable he felt socializing with them at school.

I also told her how touched I was that she reached out to share her concern for my son and that I was very thankful for her call.

It truly takes a village to raise our kids.

Sunday, April 10, 2011

Celebrating 5 Years

Today was a special day for our family, we celebrated 5 years of living in our dream home, in our new town. We moved here after our old neighborhood developed a serious gang problem during the housing boom. It was hard to leave so many friends, but we didn’t feel safe there anymore. After 5 years, we’re blessed to say that we made the right decision, we really love our new town, feel safe and have met so many wonderful people.

To honor the day, we baked a chocolate cake and watched old family movies of our little ones moving into their new home. It was so fun to watch our kids at such a young age, my youngest was learning to talk and my oldest was still in preschool. This was a time before my son’s mood disorder, so there’s a sweetness in those videos of a time when we were naive to the life we know now. My son was fresh to the world and free of the struggles he battles everyday. These videos made me smile and made me ache at the same time. I have a feeling that my son felt the same.

This day also reminded me of all we’ve gone through and how much we’ve overcome. How we now stand stronger, wiser and still hopeful for the future, scars and all. It may have been the hardest 5 years of our life, but I feel thankful for being home through it all.

I also feel like I deserve a BIG ol’ slice of that chocolate cake!

Friday, April 8, 2011

Sean Costello Memorial for Bipolar Research


Happy Friday everyone! It’s been a very long week eh? I wanted to spread the word about the upcoming memorial for bipolar research, if you haven’t heard about Sean Costello and his amazing talent along with his struggle with bipolar illness, you can read this special guest post by his own mom, Debbie Costello Smith, in the post Sean Costello’s Life. If you live near Atlanta, join the celebration of Sean’s life in the event below and help raise money for bipolar research.




DON’T PASS ME BY: 
A CELEBRATION OF SEAN COSTELLO 

DATE: Saturday, April 16, 2011 

TIME: 6:00 PM

PLACE: Northside Tavern, 1058 Howell Mill Rd NW, Atlanta, GA

WHO: Chicago Joe's Rockin' Blues Camp Band, Odd Man Out, Truett Lollis, The Hollidays, Snave & the Grass, Rod Hamdallah, The Electromatics, Uncle Sugar

WHAT: The Sean Costello Memorial Fund for Bipolar Research will hold its third annual celebration of Sean Costello on Saturday, April 16th, 2011 at Northside Tavern, located at 1058 Howell Mill Rd NW, Atlanta, GA. This year's lineup features: Chicago Joe's Rockin' Blues Camp Band, Odd Man Out, Truett Lollis, The Hollidays, Snave & the Grass, Rod Hamdallah, The Electromatics, and Uncle Sugar. Doors open at 5pm and entertainment will follow from 6pm - 2am. Tickets are only $10 at the door! Donations are tax deductible according to IRS guidelines.

This year's concert will also recognize our volunteers who have helped us over the last three years. We would not be able to continue the mission of the Fund without the support of our dedicated volunteers.

Sean Costello was most recently recognized for his posthumously released Sean's Blues: A Memorial Retrospective, which was nominated for Best Historical Album in the 2010 Blues Music Awards, and Best Contemporary Blues Recording in the 2010 Blues Blast Music Awards.

Also, We Can Get Together, the last CD released by Sean, was nominated for Best Contemporary Blues Album by the BMAs in 2009. His legacy includes 6 CDs beginning with Call the Cops at age 17 and multiple international awards.

The Sean Costello Memorial Fund for Bipolar Research is uniquely focused on the needs of musicians with bipolar disorder. The Fund supports and conducts research on bipolar disorder and creativity while promoting awareness, providing education, and serving as a resource for these musicians and their support systems in order to foster acceptance, functioning and health.

For more information, please visit www.seancostellofund.org.

Tuesday, April 5, 2011

The Warrior Gene

This week on the Dr. Phil show, they aired an episode called Born to Rage about individuals who have the “warrior gene”. According to the show, a new study suggests that this gene, if in your DNA, makes you more prone to rage than others. One of the characteristics of the warrior gene is someone who goes from 1–10 instantly. They usually respond impulsively with anger to everyday situations, especially when things don’t go as expected.

I don’t know about the authenticity of this gene and research, but it did make me wonder... would my own son test positive for it? Either way, it’s interesting and I hope that one day they’ll be able to look into our genes to determine what’s going on with our kids.

So, have you heard about this gene, if so, what do you think about it?

You can read about this episode on the Dr. Phil show here:
http://www.drphil.com/shows/show/1626/

* * *

More on the Warrior Gene:

“Warrior Gene” Predicts Aggressive Behavior After Provocation
http://www.sciencedaily.com/releases/2009/01/090121093343.htm 

National Geographic and Henry Rollins explore “warrior gene”
http://www.scpr.org/news/2010/12/14/national-geographic-and-henry-rollins-explore-warr/

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Video Source:
Uploaded on YouTube by  on Mar 31, 2011



Sunday, April 3, 2011

What Goes Up Must Come Down

We took the boys on a fun family outing today. My son did really well, only showing a few signs of stress, but in the end, it proved to be too much for him. Once we got home he couldn’t handle the word “no” because he simply didn’t have any coping skills left. It’s kind of like a computer that crashes after it gets overloaded with too much data, it simply stops working. Unfortunately, this lead to destructive behavior that required me to hold him down. At one point during our struggle, he cried out, “I just want to be normal.”

These words hurt me deeply. It feels like he’s stuck in a deep well calling for help and all I can do is watch from above. I feel completely useless. I know he’s trying so hard and I can only imagine how difficult it must be for him. In that moment, I could see where he switches from not being sensible to understanding how outrageous the situation is. Yet he’s held captive by it, he can’t escape it and continues to rage against me.

I feel we (as his parents) are to blame, we should have left him with a sitter. I should have remembered that what goes up, must come down. In the case of my son, too much fun in a big environment is going to result in a meltdown. Sorry buddy for forgetting that.

I’m so thankful for my husband tonight. For being calm, for saying and doing all the right things. He reminded our son that there’s no “normal”. We all have issues that we’re struggling with. He also let him know that we recognized how hard his struggles are for him.

I wish I could take away these struggles and give my son an easier childhood. I wish that he understood that I don’t hold any of this against him and that I find him just as precious as the day he was born. When we’re struggling, it’s not my son that I’m fighting against, it’s this disorder. After the rage is over, I’m not thinking about the disruption, instead I’m thinking about his words, “I just want to be normal”, I’m thinking about how much I hate mood disorders and how cruel it is to my son and his family.

I’m thinking about how much I love him... as tears roll down my face.