My Son Has 2 Brains: A Mood Disorder Blog

Sick and Tired.

2012-02-09T21:59:00.000-08:00

Do you ever feel sick and tired of it all?

I know... that’s a dumb question.

However, that’s where I am tonight. There was no rage or major issue. It’s the days, hours and minutes all combined sitting on my shoulders. It’s the feeling that the challenges will never end. That my son’s illness is a part of every aspect of our life. Every conversation, every decision and every action.

I feel tired from having the weight of every major decision being followed by yet, another important decision. Then there’s the education required for each step. Having to research medications, doctors, therapists, 504s and IEPs, it feels never ending. Then I must study parenting techniques and nutrition from yet another recommended book. All while charting every behavior and mood. I seriously feel like I could get another college degree at the end of this journey.

When I first started blogging I came across another blogger who goes by the name of “Accidental Expert”. I love that name. We truly become experts in an area we never intended. Unfortunately, the process is exausting and the days end with your child mouthing off at you.

Then there’s the battles I fight. The battle with my son’s moods, the school and the insurance companies. Along with the battles I break up between siblings and playmates. Tired. I feel so tired.

But I have hope, because in the midst of all this, God has the ability to restore my mind and repair my heart. He’s done it many times over and He continues to give me the strength to climb the next mountain. So on nights like this, I hold on tightly to his promises:

“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28

Treatment of Mentally Ill Teens in Prison

2012-02-07T21:15:00.000-08:00

Video above is mother Lois DeMott advocating for her mentally ill son who entered prison at 15 years old. See Part 2 below.

I read an article this morning about the challenges that those with mental illness face when incarcerated. It was disturbing and left me feeling overwhelmed.

The article starts with a corrections officer finding a 19 year old (who entered the prison system at 15 years old) with known bipolar disorder, banging his blood-stained walls with his head. He was placed in solitary for up to 4 months. Sometimes without the medications prescribed by his psychiatrist.

This alone caught my attention, how is it that those with mental illness go without their medications while in prison? From my own personal experience, a person with a serious mental illness who is not receiving proper treatment can become defiant and in some cases destructive. But rather than treating the illness to stop the behavior, correction facilities use punishment, further escalating the prisoner’s unwanted behavior.

This past September, this prisioner was punished for damaging prison property when he ripped up his bed sheets to hang himself. Instead of treatment, he received a fine and loss of privileges.

These punishments can unfortunately lead to longer prison sentences and from my own belief, abuse of the mentally ill.

So who do we blame? Well we can’t directly blame the corrections officers who’s biggest job is maintaining safety. I understand that they’re overwhelmed with this difficult job.

I’m sure the blame can be assigned to many areas, but who will fight for reform?

His mother.

Lois DeMott is on a mission. According to the article, she cofounded Citizens for Prison Reform, a group that lobbies for legislative reform in Michigan.

I can only imagine the mountain she has to climb, but I’m so thankful that she’s fighting this fight for not only her son, but for many others that are facing prison time with mental illness.

* * *

Part 2 Video (discusses prison stay and treatment):

Detroit Free Press Article:
Jeff Gerritt: Mentally Ill Get Punishment Instead of Treatment
http://www.freep.com/article/20120205/OPINION02/202050442/PUNISHMENT-INSTEAD-OF-TREATMENT-Hundreds-of-Michigan-s-mentally-ill-inmates-languish-in-solitary-confinement-lost-in-a-prison-system-ill-equipped-to-treat-them

Humanity for Prisoners:
http://humanityforprisoners.blogspot.com/2008/11/mentally-ill-kids-in-prison.html

Resources:
Detroit Free Press
By Jeff Garritt
Published: Feb. 5, 2012
Consulted: Feb. 7, 2012

Video Source:

Uploaded on YouTube by ACMHWeb on Aug 25, 2009

Uploaded by ACMHWeb on Aug 13, 2009

Should We Pursue an IEP?

2012-02-05T20:04:00.000-08:00

I recently asked our school if we could create an IEP for my son so we’re more prepared for middle school and also so my son can be placed in a special study class that will allow him to do his homework at school with staff support. Our principal responded that he didn’t think it was necessary since my son already has a 504 plan with accommodations. He also felt that the 504 suited my son better and provided more choices as far as accommodations in the regular classroom setting. His concern is that the IEP would put him with kids that are more behind than he is and who would model unwanted behaviors.

My problem is that the middle school told me that we needed an IEP to get the study skills class next year.

To support his opinion, the principal pointed out that my son is performing well under the 504 plan. I then shared that he’s currently receiving a D in math and almost all homework struggles are around math assignments. I explained that bipolar kids can have learning deficits in the areas of executive function and working memory making math with multiple-steps difficult. I told him that I wanted him tested in these areas to see if that’s why his homework is such a struggle and why he’s now even failing math tests on purpose just to get the exams over with.

The teacher felt that it’s just a lack of motivation on my son’s part. But when I read about the executive function and working memory problems in my resources, it explained that most bipolar kids will do good in english and spelling but struggle in math, even having a hard time keeping math facts memorized. It also pointed out that often teachers and parents assume that the kids are lazy and not trying hard enough, when in fact they can’t tackle what appears to be an undoable task.

I was wondering, have you had your child tested for an IEP?

Do you regret having an IEP, wishing you stuck with a 504 plan?

Did the IEP testing reveal any learning disabilities? If so, what kind?

I would greatly appreciate it if you could share your experience as I try and navigate these uncharted waters with our school.

On the Right Path with Therapy

2012-02-02T20:48:00.000-08:00

Today my son met his new therapist, even though I liked her, it was important that he felt the same too. In the past, the therapists have always spent their time talking to me and advising me on how to manage my son’s symptoms. But today was a completely different experience. My son spent the entire time alone with the therapist. I have to admit, the control freak in me kept wondering what was going on behind the closed door, but when I saw his smile after he walked out, I was thrilled.

She seemed to have a great connection with my son, as she walked out she shared how much she loved talking to my son, saying how smart he is and how talkative he was. She encouraged us by telling us that lithium is most optimal after 9 months at the therapeutic level and we’re still a few months away from that, so we have good things coming. Then she explained to us the healing ability Lithium has on the brain and how my son has a bright future ahead.

At the end of the appointment she explained to me that his time with her would be kept private and that he could share whatever he wanted on his own. I think this was really great for my son, it made it about “him”, he was now part of the process instead of adults talking about him. Then she booked us another appointment next week. I asked her how often she wanted to meet since our old HMO only met once a month and she laughed and said, that’s not therapy, no I’d like to meet once a week. Once things get better we can go once every few weeks.

After our appointment my son looked relieved and very happy. He asked me if the therapist believed in God. I said, “I don’t know, why?” He said, “Well she told me that God has given me some special gifts, you know, how creative I am and how I build stuff all the time.” He then said, “she asked lots of questions and said that we’ll play games too. Next time I get to build stuff during our appointment!”

I can tell that he really loved the experience and was already establishing the trust needed for these sessions. When I asked how she compared to all the other therapists we’ve met, he responded, “She’s the best, none of the other doctors ever really talked to me before.”

I’m so happy today, I feel like we’ll being experiencing therapy for the first time, the way it needs to be done. I think it’s terrific that she’s building a relationship with my son by spending the time with him and meeting every week. I also love the fact that this is “his therapy”, I finally feel like we’re on the right path and my son is going to lead the way!

Blood Work Gone Bad!

2012-01-31T20:59:00.000-08:00

My son needed to get 8 vials of blood drawn for the tests required by the psychiatrist and the nephrologist. If you’ve been following our story for some time, you might remember that drawing blood was almost impossible and usually lead to explosive behavior.

Fortunately, thanks to his current medication, therapeutic steps and relaxation techniques, we’ve arrived to a place where our son was willing to get his blood drawn, no longer using ELMA cream to numb the skin and Ativan to relax him. But after friday’s blood draw, we may be taking a step backwards.

My son started the appointment with a great attitude, feeling pretty excited that he was missing out on a spelling test. When the staff brought us back, I explained that he had a history of anxiety when it comes to blood work and that we needed to do a few things to help him relax.

The first step was getting my son plugged into my iPhone where he could listen to relaxing sounds like the ocean and forest. As I was preparing the headset, I asked the nurse to wait until he was listening to the music. The nurse responded, “Sure, no problem”. But it was taking me a little longer than normal and I apologized and told her that I was hurrying as fast as I could. Then to our complete surprise, the nurse stuck the needle in his arm. Both my son and I were stunned, I immediately told my son to put his focus on his DS game, but then I noticed that the nurse was having problems getting blood into the vial. So the other nurse began moving the needle around, twisting it in different directions hoping to get the blood to flow.

It was then that I realized that the nurse was probably in training, thus requiring the second nurse to supervise. I tried to keep my son calm, seeing the anxiety rise. Then the nurse announce that we needed to try a different vein.

Oh crap! That’s all my mind could think. I could feel my own heart racing as I tried to keep my son calm, reassuring him that we would be done soon. As they stuck the needle in a different vein, the blood started to flow, but after about 4 bottles, my son looked at me as his face turned pale and mumbled, “I feel sick...”

Then a moment later, he fainted and slumped down into the chair.

Of course I freaked out, but the nurses calmly said, “Oh, don’t worry, this happens all the time,” as they pulled the needle out of his arm with 4 empty vials still remaining.

If you have a child with a needle phobia and a mood disorder, I don’t think I need to explain the panic I was feeling at this moment. Yes, my son would recover from the fainting spell, but how were we going to get the rest of the required blood?

After a moment too long, my son started to awaken, realizing that he had passed out. His cry was heartbreaking and the look in his eyes told me all I needed to know. He was done with the lab.

I instantly began the work of calming him back down, asking the nurses to give us a moment, trying my best to make him feel safe and avoid a public rage. I also had to explain that we weren’t done and that they needed to stick his other arm to complete the blood test.

As I tried my best to reestablish a calm state in him, one of the nurses in a very loud, rude voice popped her head back into the room and announce that we needed to hurry this up because they had a lot of other people waiting.

It was then that my Mama Bear claws came out.

I calmly walked up to the nurse and in a very low, stern voice said, “You need to lower your voice right now or he’s going to go into a violent rage. We need more time and you need to leave us alone because you’re stressing him out!”

To my surprise, she quietly whispered, “ok.” and walked away.

Once he was calm and the color returned back into his face, I carried him to a bed where he could lay down. This was no easy move since he’s now as tall as me. I then told all the nurses to leave us alone and I would let them know when we were ready. From there, I put his calm music into his ears and began to massage his feet and legs, coaching him how to think happy thoughts to help his mind escape the next blood draw. Several times I kissed his forehead and whipped the tears that quietly fell from his eyes, this was killing me inside.

After a short time he bravely said, “Lets get this over with.”

Thankfully we got the head nurse to take over and she drew the rest of the blood in less than a minute. Before we left, one of the original nurses apologized to both my son and I saying, “I’m so sorry, it was all my fault that you fainted, I should’ve waited until you had your music ready.”

After that, I took my boy home and told him that he didn’t have to go to school since he suffered enough stress for one day. Myself included.

Doctor Update

2012-01-29T20:38:00.000-08:00

Last week was a very busy week for us. We met our son’s new nephrologist to evaluate his kidney condition (a birth defect) and I met with our son’s new therapist. I’m happy to share that both were very successful appointments.

After a very thorough evaluation, our nephrologist decided that we should not do the kidney biopsy after all. He felt strongly that there was a 99% chance that we wouldn’t gain any new information from the biopsy. He explained that we already know his kidneys are scarred from the kidney reflux and it wouldn’t be worth the risks associated with a biopsy to confirm what we already know from the ultrasounds.

He felt confident that the protein in his urine was not from any medication taken for his mental health, but rather, this protein and it’s measured volume is typical and expected for an 11 year old child that had scaring on his kidneys as a baby. He also reassured us that these meds aren’t as dangerous to the kidneys as most would assume and if there was ever a problem with the Lithium, we would know by the blood and urine work that we’ll be doing on a regular basis. He said that he has numerous patients on Lithium with previous kidney damage and they’re doing very well. So at this point, our plan is to check his kidneys every 3 months and monitor the protein levels while continuing with his current medications.

Next, I met with our new therapist. I chose to meet with her alone this time to avoid my son listening once again to all his past symptoms and episodes. I have a feeling it was stressing him out.

I will admit that I was apprehensive in meeting with this therapist because I read a bad review online, but since I was told she was good with bipolar kids from a local psychiatrist and I figured that all therapists have at least one bad review, I thought I would give her a try. After an hour long visit with lots of questions and serious note taking on her behalf, I felt pretty good with this therapist. She seemed to really understand that my son wasn’t a bad kid, but a child who has serious symptoms from what she believed to be bipolar disorder. She appeared compassionate for all that we’ve been through and was able to relate to our experiences. She even shared that she had to hold a child down in a rage for 45 minutes once, agreeing that once their trigger is turned on, you have to wait it out. At the end of the appointment she asked if I had a photo of him, which of course I did and proudly shared how adorable he is with his bright smile. I appreciated this moment because it made me feel like she really wanted to know my son.

Whether or not you label my son with “bipolar disorder” or some other new diagnosis (we’ll leave that up to the DSM guide), what matters today is that the therapist understands that my son’s symptoms are real and that she has skills to help us. So far, I feel like we’re off to a good start!

The next step is having my son meet her later this week, wish us luck!

Something to Sing About

2012-01-26T20:28:00.000-08:00

Check out this amazing girl, Shelby Tweten, who appeared on American Idol this 2012 season. She shared how singing has helped her through her bipolar disorder, especially when hypomanic, her mom would help her by having them sing together. Way to go Shelby, thank you for being brave in sharing your challenges and encouraging so many other young kids who need something to sing about. See you in Hollywood!!!

* **

Video Source:

Uploaded on YouTube by caseycarlsonesq on Jan 25, 2012

News Article from Mail Online:
http://www.dailymail.co.uk/tvshowbiz/article-2091985/American-Idol-2012-Bipolar-sufferer-Shelby-Tweten-explains-singing-helps-condition-makes-Hollywood.html

Love and Chocolate

2012-01-24T22:02:00.000-08:00

After a rough few days, my sweet husband surprised me with a card and a bag of my favorite chocolates last night. Yes, he really is that awesome!

The card says, “It sucks!”,

then on the inside, it says, “I wish there was something I could do.”

Then in his own handwriting, he wrote,

I can pray with you,
I can love you,
I can support you,
I can do the dishes,
I can take over when you tap out,
I can give you a night off,
But most of all I can just plain love you!

My husband knows just what I need when things get tough, I feel incredibly blessed to have him by my side through all of this. By the way, he really did do the dishes and made the kids’ lunch after a rough night with our son. And the chocolates, well that’s just icing on the cake!

(Love you Papa Bear)

Tell Me More!

2012-01-22T22:46:00.000-08:00

First, I have to thank all of you who responded to my last post, “Have You Been Scared of Your Own Child?” I can’t tell you how much you helped me, especially since it was such a vulnerable post, I was nervous about sharing it with you, but I felt so encouraged to see so many of you that could relate.

But now I need your help. Since we’re still in search of a good therapist, I wanted to know if any of you could share how you deal with your child’s threatening behavior. I’m trying some different things out. Such as Meg’s insightful post about asking my son, “What can I do to help?” If you haven’t read it yet, go there and see for yourself, it’s pretty good stuff! I’ve tried this technique twice now, the first time it derailed his anger, allowing me to redirect him, but the next time I think he was already too revved up and wasn’t able to respond.

I’m also trying to keep in mind some advice I got from follower “Betsy”, who shared with me long ago that anger is a secondary emotion and that I should consider what emotion preceded it, then acknowledge it with my son. If you haven’t noticed yet, he seems to be quick with his anger lately, I had another incident tonight. I think we need to go get his blood levels checked. I’m afraid his growing body is affecting things.

In the meantime, please share any techniques that have worked with your child. I would also be interested in hearing about how you discipline them. Not for rages of course, but for regular defiant stuff. How does your child respond? Are you finding success?

Please tell me more!

* * *

Meg’s Post at Raising Bipolar:
http://raisingbipolar.com/2012/01/18/what-can-i-do-to-help/

By the way, I have 99 followers, who wants to be #100???

Have You Been Scared of Your Own Child?

2012-01-19T20:31:00.000-08:00

Last week something disturbing happened.

I’ve been torn as to whether or not I should blog about it. At first, I knew I couldn’t because I was still licking my emotional wounds and didn’t think I could write without being overly emotional, then I wasn’t sure if I should write because some things are just better left unsaid.

But then I thought about that other mom. Maybe it’s you. Maybe you have experienced this same thing and are scared to talk about it, like me, yet still live with the pain. So I decided to be real and expose my experience because I know that I’m not alone.

Last week there was a day where my son’s moods were off. Even his teacher emailed me to warm me that he was struggling about his homework assignments. When I picked him up at school, he greeted me with growls and sharp words showing his dissatisfaction.

Once home, things naturally escalated. I tried to encourage him to do his homework, even reduced the amount of problems but his behavior was escalating faster than I could keep up.

At one point, he ripped up his homework, then I taped it back together, which he responded by ripping it up again and even eating part of it so he could guarantee it’s destruction. Then he was in “the mode”, even using profanity for the first time. He walked around looking for things to mess with. He began throwing away my important notes for a job I was working on. I was still calm and in control, asking him to take my papers out of the trash, to leave my things alone and to please go to his room to calm down. But he continued to push and then I lost it.

I screamed at him, “LEAVE MY STUFF ALONE!!!!”

As you can imagine, my reaction was like throwing a match on a pile of gasoline. My son exploded, screaming at me in a wild manner while I screamed back. He then began grabbing clementines off the counter and launched them full force at my head.

I chased him up into his room where he grabbed a large stick (like a thin baseball bat) and then he began chasing me around the house while swinging the stick at me.

He never hit me, but scared me none the less.

As I was running from him, I was overcome with fear, I began crying and begged him to stop.

But without hesitation or any emotion, he continued to rage.

It wasn’t until my middle son came armed with a plastic toy sword yelling, “LEAVE MOMMY ALONE!” That my son became distracted, allowing me to grab the stick and tackle him to the ground.

I held him for at least 20 minutes, most of which he fought and struggled to get away. Thankfully my husband was on his way home and was able to take over from there.

The episode was over, but the pain lasted into the night as I cried myself to sleep.

I felt guilty for escalating the situation. Had I remained calm, I could’ve diverted him, even found a better way to mange his moods, but I didn’t. I let my emotions take over.

I was also deeply disturbed by my son’s unrelenting behavior. Especially when I began sobbing in front of him, begging him to stop. I was completely caught off guard by his reaction. I thought he would’ve pulled back and that he would’ve recognized that he was terrifying me.

The fact that he didn’t, shook my core.

When the episode was over, he returned to his loving, sweet self, though deep down I know he was dealing with his own regret, even sharing that he was God’s mistake. How does a child recover from this?

As my husband tried to comfort me, he reminded me that though he appeared threatening, he never hurt me and he clearly had the opportunity if he wanted it. But for me, I was feeling anger and hurt and had a hard time wanting to be around my son in the remaining hours of our day.

This made me feel like a horrible mother. To think these things and to feel these things.

I will always and forever love my son, nothing will ever change that, but I was scared of my own child.

How does a mother cope with that?

Trusting My Gut Instinct!

2012-01-17T20:59:00.000-08:00

Well I did it.

I trusted my gut instinct and cancelled my Thursday appointment with the therapist that I wasn’t happy with. I called him today and asked if he had reviewed my son’s case yet and he said he was only half way through. About five minutes later he called me back ready for questions.

I asked him, “So what do you think is going on with my son?”

He said, “Well it looks like he’s dealing with some OCD, impulse issues and oppositional defiant disorder (ODD), possible ADHD and maybe bipolar disorder.”

I then explained that yes he does have a problem with impulses and being defiant, but this is not all the time, only when his moods are off. When he is stable he has self control and obeys us and wants to do well. As for the OCD, I don’t now how he determined that being that he has no OCD tendencies.

Then I asked him, what about him seeing monsters? (Information I provided in the documents he read.)

He said, “For some kids this occurs because they are scared of monsters or of the dark and think they see things. It’s pretty common.”

Then he mentioned that the voices were not typical and that they weren’t coming on gradually so he didn’t think it was schizophrenia. I told him that I agreed and explained that the monsters were not a result of him being scared of the dark.

I then went on to explain the episode that lasted over an hour where he started feeling deep despair followed by seeing monsters. He then experienced quick changing moods of laughter, to crying, to thinking his parents were dead and to him seeing a white bunny with a pink scarf under the bed with his bloody ears cut off, holding a knife and growling at him. After that, my son vomits (from all the adrenaline ) then takes a bath. Once done, he goes down to have dinner and acts as if nothing happened, almost no memory of the episode.

To further demonstrate that these were clear episodes, I then explained a similar thing happening when he left Legoland. While driving home, he sat up with eyes of terror and thought I was a monster in the car trying to kill him, this lasted for about 30 minutes, also occurring after a drastic mood shift into depression.

The therapist responded with, “Is it possible that he just wanted to stay at Legoland and was sad?”

I explained, “No, he was happy to leave, in fact he had a brand new lego in his hand that he couldn’t wait to open once he got back to the house.”

From there I knew he wasn’t getting it. All good questions, but after the materials I provided him, I didn’t think these type of questions would follow.

He then said, “well it’s possible these episodes are mania and in that case I’m leaning towards bipolar. If that’s the case, there’s no way to end the illness, so we can only address his oppositional behavior and impulses. He would need to learn that they aren’t acceptable.”

The fact that he was separating the symptoms had me concerned. Just addressing his oppositional behavior will only lead to him feeling like a bad kid. We need all of his wellness addressed. He needs to learn how to cope with his struggles. Not be punished every time he fails.

So after getting off the phone, I prayed about it, I talked with my husband and I imagined what it would be like if I called him during one of my son’s rages and my gut instinct told me that he wouldn’t be able to help us.

So I cancelled our future appointment.

In the meantime, I have calls out all over town, even our old therapist helped out by giving me names of doctors outside of his HMO that may know where to refer me. It may be a long process, but I’m willing to do the hard work. I’m also approaching this from a different angle, I’m treating this like a job interview, asking them the tough questions, making them explain their experience and theories of practice. I’m making them earn this very important job of helping my son!

Not Impressed with the Therapist

2012-01-15T23:11:00.000-08:00

At the end of last week we met with our new therapist for the first time. My reaction... I’m not impressed. He was nice and gave us 50 minutes which was great, but as my son said, “He went off topic a lot”.

Throughout our meeting the therapist would stop the discussion to quiz my son about his knowledge on stuff, such as the function of the kidney, then for the next five minutes go into great detail about the kidney, another time it was a lecture about doing homework, but ending with him discussing how in the future we will be watching tv with actors in our rooms outside of tv screens. The list goes on and the minutes slowly passed. Unfortunately when we finally got to what I needed to talk about, we were out of time and my son was terribly bored. I can understand that he may have been trying to connect with my son and make sure that he understood what we were discussing, but for our preferences he spent too much time talking about stuff we don’t care about.

What also bothered me was that he expected my son to just sit still on a couch, facing him and just listen. This seemed to be torture for my son, at least he could have let him build legos or color, he had the supplies around him, but it was off limits to my son. It was also annoying that he started to scold my son if he tried to hold his toy he brought. I think he would’ve had a better response from my son if my son could’ve actively done something while they talked. Our old psychiatrist was great about this. Usually he would play catch with my son while they talked, it was a great way to get my son to feel relaxed and willing to participate.

So at the end of the appointment, my son and I left feeling disappointed but we’re willing to give it another shot when we meet next week and he reveals his plans for us on how to help with homework triggers, explosive behavior and discipline. In the meantime, I’ll be keeping my eye open for someone else if this doesn’t work out. I have to say, I really miss our old therapist, we had a good thing going.

Our New Psychiatrist

2012-01-12T19:43:00.000-08:00

This week we met our new psychiatrist for the first time. We had to switch doctors due to our recent insurance change. With careful consideration, we chose a doctor that a personal friend recommended and our old psychiatrist approved of, so I was feeling optimistic about how things would go, but never imagined it would go so well.

The appointment lasted an hour and we never felt rushed, which hasn’t always been the case with previous doctors. I really appreciated that he started the appointment by connecting with my son. He asked a lot of great questions and seemed interested in what he had to say. Next we ran through family history and symptoms. As always, I provide the doctors with condensed details from my charts and journaling with a few typed pages. In the past, the doctors seem to care less and at one appointment a doctor actually handed it back to me and said that it wasn’t necessary. But our new doctor impressed the heck out of me when he sincerely seemed to appreciate all the information and promised to review it all. Per my request, he even said he was willing to look at my son’s entire case from beginning to end to evaluate if any of his medications have brought on symptoms. His initial response was that it wasn’t likely. From there he asked us a lot of questions covering everything I could imagine. By the time we were done I was pleased and felt like he was more than capable of helping our son.

As with every first appointment, I ask the doctors the same question, “What do you think my son has?” Without flinching, in a tone that said “obviously”, he said, “Well bipolar disorder”, as he gestured toward the list of symptoms. He then asked, “why, have you been told differently?” We explained that previous doctors hesitate to label because of his age and one doctor told us that it was statistically impossible for my son to have bipolar disorder since only 1% of the population have it. We also explained how our first psychiatrist declared that our old HMO will no longer be labeling kids with bipolar disorder, but will use the new label once released with the DSM guide. In response, our psychiatrist shook his head and said, “it sounds like politics, I’m glad I don’t work there.”

The only downside was the long commute to get there, on the way home my son started to panic in the car because we were in an unfamiliar location far from home, it was a rough reminder of how fragile he is. Thankfully every other aspect of our new doctor was great. Both my husband and I were enthusiastic about how positive the experience was and my son gave us the “thumbs up”. After all we’ve been through, I wanted to give the psychiatrist a big hug after the appointment, don’t worry I didn’t get weird on him, instead I settled for a hand shake, but I was smiling ear to ear.

Getting Ready for the First Appointment

2012-01-10T20:57:00.000-08:00

Tonight I’ll be keeping this post short, I’m completely exhausted. For the last 2 days I’ve been prepping for my son’s first appointment with his new psychiatrist. It feels like I’ve been prepping for a final exam. I’ve been creating summaries of all his symptoms based on the charts I’ve kept. In addition, I created timelines for all his medications by listing all reactions and symptoms that followed and even watched old videos of my son experiencing episodes of psychosis. If that wasn’t enough, I spent some time reviewing old posts to accurately document what my son has been through over the past 4 years.

About halfway through the material, I started to feel sick to my stomach. It became overwhelming and just plain sad. Seeing video of my boy 2 years ago, looking so young, screaming that he wanted to kill himself was enough to bring me to tears.

My son has been through hell and back. He really is remarkable!

Today I felt pleased with all that I’d pulled together. I was surprised about some of the details I’d forgotten, it was proof that documenting your child’s symptoms can be a valuable tool. With so many details, there was no way I could’ve kept it straight on my own. What’s interesting is that when you start seeing symptoms, you never think about what will be coming in the years ahead. It was more than I’d imagined and tougher than I remember. Thankfully, my son has forgotten most of it.

Check back for my next post when I share how our much anticipated appointment went. It’ll be worth reading!

Missed Naps and Mood Disorders

2012-01-08T20:56:00.000-08:00

A news article about naps and mood disorders caught my attention this weekend. The article claimed that a new study indicates that toddlers who miss daytime naps are at an increased risk for mood disorders later in life.

“This study shows insufficient sleep in the form of missing a nap taxes the way toddlers express different feelings, and, over time, may shape their developing emotional brains and put them at risk for lifelong, mood-related problems,” explained study leader Monique LeBourgeois.

This study made me laugh a little because my first thought was, doesn’t the child miss naps because of a mood disorder. It’s the whole “what comes first, the chicken or the egg?” I tend to think that if a child missed their naps, it was because they couldn’t sleep. There aren’t many moms that would purposely deprive their child of naps, I mean let’s be serious, in motherhood, the nap is the golden hour. But if your child has mood issues, this hour can be robbed by your child’s inability to sleep.

When I think back to when my son was a toddler, I have unpleasant memories of trying to get him to take a nap. The challenge went on for hours sometimes. I would try different techniques, different times of day, you name it, we tried it and still couldn’t get my son to nap.

But I don’t think his missed naps caused the mood disorder, instead I believe that the mood issues were already underway in his brain making napping difficult for him.

It wasn’t until I had a second child that I found out that toddlers really do nap and it isn’t always such a monumental task.

What about your child, did they have trouble napping as a toddler?

Missed Naps Could Put Toddlers at Risk for Mood Disorders:

http://health.usnews.com/health-news/family-health/sleep/articles/2012/01/05/missed-naps-could-put-toddlers-at-risk-for-mood-disorders

* * *

References:
U.S. News Health

http://health.usnews.com/health-news/family-health/sleep/articles/2012/01/05/missed-naps-could-put-toddlers-at-risk-for-mood-disorders

Published: January 5, 2012
Consulted: January 8, 2012

Getting Back into the Game

2012-01-05T22:12:00.000-08:00

It feels so good to have the kids back in school!

Can I say that again?

It feels SO GOOD to have the kids back in school!!!

Everyone is doing great at getting back into our daily routine, the rhythm of our family just feels “right” once again. My son seems to be tackling his homework well, this is after tearing up his Christmas homework packet and informing me that he was not going to do it EVER during his Christmas break! But now that he’s back in school, he’s working hard and complaining a whole lot less. Things aren’t perfect, but it’s been manageable.

As for me, I’ve gotten back into the game. I’ve increased my workouts and I’ve removed the excess junk food from my diet—sorry but I just couldn’t resist all the yummy Christmas treats around the house. Did I tell you that my husband came home with a huge gift basket of Godiva Chocolates! I couldn’t help but splurge everyday during vacation. I’ve also committed myself to going to bed earlier, I tend to stay up past midnight when we’re on vacation and after a few weeks, I started to feel run down. And spiritually, I’ve recommitted to my bible studies, yes they too have suffered over the holiday season. So now that I’ve gotten back on track, I’m excited to share how great I feel. I have so much more energy, I can cope with stress better and just feel happier overall. I guess there’s really something to taking care of oneself, the rewards are worth the sacrifices.

How about you? Have you made any changes or committed to a New Year’s resolution?

* * *

Here’s a sweet treat that’s loaded with antioxidants that my son and I love!

My Blueberry Pie Smoothie:
Mix in blender:
1 bag of frozen blueberries
Add milk (to the level of the blueberries or a dash more to allow the berries to blend)
Add vanilla yogurt (several large spoonfuls)
Add 1-1/2 graham crackers (sounds strange but trust me, it’s very yummy)
Add cinnamon (I like a lot—about 3-4 dashes)

Blend and enjoy!

Correct Bipolar Diagnosis in Teen

2012-01-03T20:44:00.000-08:00

Last week I came across an article in the Star Tribune about a teen who was correctly diagnosed with bipolar disorder. I thought it was interesting that the media wrote about such a case. The article points out that many children are wrongfully diagnosed, but there’s a group of kids that really do have the illness and need proper treatment. As I read the story, I was struck by some of the similarities that my son has with the teen.

In the article, the mother explained that her son was very irritable and would bow up at people. She described him as an “angry child”. As he got older and became depressed, he would pull his hood over his head and try to shut out the world.

This is the same thing that my son has done for years. At school, the teachers would describe my son as looking tired, withdrawn and always wearing his hood when he was in his depressed mode. He would even have it on during circle time and recess. At one point, the kids started calling him “the hood boy”.

The teen also saw things that weren’t there and heard voices calling him, just like my son.

As the teen got older, the illness progressed and he started to self harm and tried to commit suicide. But the article doesn’t end there, instead, it offers a message of hope. It shows that medications can be successful, allowing this child to improve relationships, finish school and even pursue higher education.

Included in this article is a video of the boy that is definitely worth watching! Check it out!!

Teen’s correct diagnosis was exception, not rule:
http://www.startribune.com/lifestyle/wellness/136409283.html

* * *

References:
Star Tribune
By Jeremy Olson
http://www.startribune.com/lifestyle/wellness/136409283.html
Published: December 29, 2011
Consulted: January 3, 2012

Starting a New Year

2012-01-02T00:50:00.000-08:00

There’s something magical about watching the ball drop on New Years Eve, it feels like a fresh start, like the calendar alone can make a shift in our life’s path, giving us a better outcome. This year as I watched the countdown, I was surrounded by sleeping boys, all who were committed to staying up until midnight, but couldn’t fight their sleepy eyes. As I looked around, watching their little bodies resting peacefully, I felt so much appreciation.

When I think about our last year, I can’t help but be grateful. My son has experienced his longest run in stability in over 4 years. We have enjoyed peace in our home and have been able to focus on things outside of our son’s mood disorder.

Even better, our son got to experience being a 10 year old boy.

As for our healthcare, I really grew to appreciate our psychiatrist, I was sad to see him go with our insurance change. He even emailed me this month to let me know that he ran into our new psychiatrist at one of the hospitals and pulled him aside to brief him about my son’s case. In a final email to me, he encouraged us and wished us the best. I felt he truly cared for my son, something we had never experienced in the past.

As the new year begins, we face a lot of changes with all new doctors and a kidney biopsy in the near future. I feel excited to meet our new team, but a little nervous that we’ll face unexpected challenges. The first one hit us last week when we were notified that my husband’s employer forgot to assign us our medical group, so we were assigned to a default group outside our planned care. Which meant that we wouldn’t be able to see the pediatrician, psychiatrist and kidney nephrologist that we had appointments for in January. To say I handled this gracefully is a long stretch, after dropping an “f-bomb” under my breath, I immediately ran up to my office to call the insurance company, thankfully we were able to make the switch into the correct medical group and receive new medical cards just in time.

I’m sure the year ahead will bring many more stress filled moments, but a part of me hopes that as each year passes, I will become wiser and more capable of handling stress. I’m still trying to focus on being present and enjoying the moment, knowing that as puberty approaches, stability may become more difficult for my son. This may be one of our best years yet, and I don’t want to waste it on worry.

And as I watched my son sleeping next to me with the sound of fireworks outside, it became easy to feel optimism for the future, because my son deserves at least that!

Happy New Year my friends! Thank you for being by my side, giving me a place to heal and hope. I wish you and your family the best and hope to hear from you throughout the year ahead.

2012, here we come!!

Suicide in Teens

2011-12-30T00:10:00.000-08:00

Dr. Kay Redfield Jamison speaks about suicide in teens.

This past summer I had the devastating experience of attending the funeral of an incredible young man I knew who died from suicide. He wasn’t the only boy in my small town to die from suicide this year, 2 other young men from the same high school did within months of one another. Their story is not mine to tell, but as a parent of a child who has wanted to die, their stories hit very close to home, so much so it rattled the walls of my heart.

Last night I was overcome with this fear, the fear of losing my son to suicide. I try to avoid such thoughts, but every once in a while the worry creeps into my mind, usually when I least expect it, I get emotionally knocked over and I feel the air get sucked out of my lungs.

I know that we’re doing everything possible to help our son avoid such an outcome, but I also know that as each year passes, he’ll gain more freedom and I’ll lose more control. I know it sounds ridiculous, but with him being so young, I feel like I can prevent this outcome, I can monitor his moods, follow his actions and support his care. But one day, he’ll leave my nest and go through his symptoms alone. How will I know that he’ll be ok? What happens when he becomes depressed and there’s no one there to support him? What happens if he refuses to take his medication? Or doesn’t get his prescriptions filled properly? How will I protect him?

I think to a degree all moms feel this way when their children grow up and move on, we worry about their safety, that they’re making mature decisions and so on, but with my son’s mood disorder, my worries feel justified.

Thankfully we both have time ahead of us to mature and adapt. In the meantime, I’ll be teaching my son how to monitor his symptoms, how to responsibly take and manage his medications and the importance of working with his doctors. I also need to work on trusting God, letting go of what I never really controlled in the first place.

Thankfully I still have some time to grow up.

* * *

If you or someone you know is in immediate danger because of thoughts of suicide, please call 911 now.

If you are outside the US, call your local emergency services.

If you are not in immediate danger because of thoughts of suicide, but need someone to talk with about your suicidal feelings, please do not hesitate to call one of the following national suicide prevention lines:

1-800-SUICIDE (1-800-784-2433)

1-800-273-TALK (1-800-273-8255)

You are loved and you matter!

* * *

Video Source:

Uploaded on YouTube by roycecarltonchannel on Oct 5, 2010

Glenn Close Speaks Up About Mental Illness

2011-12-27T23:57:00.000-08:00

Video above: Interview with Glenn Close and her sister who has Bipolar Disorder

“Mental illness and I are no strangers.” — Glenn Close

Over Christmas I came across this inspirational article written by Glenn Close. In the article, she shares her personal experience with mental illness in her own family and discusses the stigma of mental illness and the cost to keeping silent. She also shares some interesting insight on how Hollywood portrays mental illness in the movies and how these images continue the stigma that exists. In the end, she leaves us with the question about mental illness, “...will we face it with open honesty or silence?” I know this is a question that only you can answer, but it’s worth the consideration.

Read the entire article here:
Mental Illness: The Stigma of Silence
http://www.huffingtonpost.com/glenn-close/mental-illness-the-stigma_b_328591.html

* * *

References:
HuffPost
By Glenn Close
Mental Illness: The Stigma of Silence

http://www.huffingtonpost.com/glenn-close/mental-illness-the-stigma_b_328591.html

Published: Oct. 21, 2009

Consulted: Dec. 27, 2011

Video:
Posted on YouTube by BringChange2Mind on Oct 21, 2009

Merry Christmas!

2011-12-25T23:28:00.000-08:00

This morning my son woke us up at 4:30 am, he said his melatonin stopped working and he was too excited for Santa. By 6 am, I found him seated on my bedroom floor watching my alarm clock, waiting for the golden hour of 6:01 am when the boys were allowed to wake us up for Santa gifts.

After the boys ran downstairs to see their gifts, my middle son declared with joy, “Somebody must have been really good this year!” I couldn’t agree more!

Over the last few days, we had many family gatherings including church and Christmas dinner at Grandma’s house. My son was such a trooper. He had a few moments of feeling overwhelmed, but after taking steps to distance himself on his own, he was able to join back into the fun. Honestly, he did much better than I expected, I was pretty proud of him for being so flexible with his lack of sleep, tons of excitement and a few too many cookies.

Tomorrow we’ve planned a day of rest, our hope is to recharge our batteries with a family jammie day and hopefully a lot of cuddling on the couch. I have to admit, even this mama bear is feeling worn out.

Merry Christmas to all and to all a good night!

The Horror Inside His Head

2011-12-22T12:57:00.000-08:00

Yesterday my son had another unusual episode, it only lasted about 7 minutes, but was intense nonetheless. After a friend left from a long play date, I found my son crunched into a ball on the couch with his head tucked under his arms.

As I approached him, I asked him what was wrong, he seemed to tighten up to the sound of my voice and scurried to hide his head like he was afraid of the air around him. He whispered in a panicked voice, “I don’t feel safe.”

I gently asked if I could hold him to help him feel safe and he responded, “yes.”

I slowly pulled him close as I felt the intensity of the moment. It literally felt like a bomb would explode if I moved the wrong way or spoke too loud.

After several long moments he abruptly pulled away and scurried to the other side of the couch, returning to the balled up position. I heard him say something with his quivering voice, but it was too soft for me to understand. As I approached carefully, asking him to speak louder so I could understand, he clinched his muscles and tried to bury is body deeper into the couch.

I asked again, “What’s wrong, can you tell me what’s happening?”

This time he quickly retreated farther down the couch as he choked out the words, “Stay away, I want to hurt you!”

We sat in silence for a few minutes, waiting for this moment to end.

I prayed.

Slowly he started to rise, almost like a person who had fallen asleep and was waking up fresh again.

Within minutes he was back to normal and ready to go to the store.

I was concerned about his behavior but relieved it was short lived. I was also thankful that he was able to recognize his desire to hurt me and was acting in such a way to protect me, it gives me hope that as he gets older he will continue to gain more control and recognize his symptoms as they approach.

* * *

This morning I asked my son about the episode and what he remembered. He explained that he pulled away because he was having a bad vision. When I asked what he saw he said, “I saw me stabbing you in the stomach”.

Of course, I called our therapist to discuss this and he explained that it’s very common for those with mood issues to have very vivid thoughts. In the case of my son, he was feeling a lot of anxiety and fear, as a result, his brain made up the vivid thought to match with the feelings his body was experiencing. This is different than hallucinations, instead, it’s the brains way of making sense of why it feels the way it does, it’s his imagination filling in the blanks. Compare this to you hearing a strange sound downstairs and imagining that someone is trying to break into your house, for him, these thoughts are a lot more vivid and not based on anything in reality, but rather his fight-or-flight response being ignited by the chemicals in his brain. Thankfully, he explained that we shouldn’t be concerned that he would ever act on these thoughts.

Having been there when it happened, I can confirm that he wasn’t aggressive and I never felt threatened, it was clear that the horror was inside his head, if anything, it was sad to see him so frightened in a place where he should’ve felt safe.

I’m a Work in Progress

2011-12-20T12:12:00.000-08:00

Well I’m still working on being “present”. It’s pretty easy when things are going well, in fact, I’m enjoying life a lot more when I do. But it remains a challenge when things aren’t so good.

Yesterday my son woke up at 5 am and couldn’t go back to sleep. This is highly unusual for him and indicated that his moods may be off. Then about mid-morning he came to me with a bright look on his face and said, “I feel like I want to fly!” He then went on to say that he couldn’t stop thinking about it. He said that he couldn’t even look at the sky because it made him want to fly. As he was explaining this to me, he started to laugh, then his face became distorted with confusion and he started to cry. From that point on we discussed that his brain was making mistakes and that it was important that he didn’t follow through with these impulses. He agreed and said, “Yeah, if I jump off the balcony I will hit the cement and die.”

His urge to fly slowly diminished as the day went on with the exception of a few moments in the evening when his moods keep changing in his brain and he began to hit his head on the couch arm to make it stop.

The other challenge yesterday was trying to get him to do his math homework, yes, my son was given a packet of math homework to do throughout his vacation–big bummer! It didn’t go so well and I found myself asking... how do I be in the “moment” when the experience is something I want to escape.

Then I remembered the email I got the very same day from my pastor:

...When our pain was the most intense, all I wanted to do was escape from the “now”. But the irony is that what I needed most (God’s peace, comfort, power) I could only experience in the “now”.

So this translated into looking for Jesus in the pain instead of running away from the pain.

Being present in pain is so difficult. I admire anyone who is willing to hang in there. I pray that the coming weeks, even if painful, are filled with the fullness of God’s presence.

The full supply of grace is here, now. I pray you and your husband remain soft-hearted and desperate enough to receive it.

So rather than trying to escape the moment, I prayed, I asked God to help us and to help my son. I simply tried to lean on God to get me through it. I felt comfort in that. Then in the next moment, I tried to move forward without holding onto the past.

This unfortunately doesn’t come natural for me, but I’m trying, I’m definitely a work in progress!

A Message to Remember

2011-12-18T16:30:00.000-08:00

It’s the final week before Christmas and if you’re like me, I still have things to wrap, cookies to bake and a lot of chores to complete, all while maintaining peace in my home. It’s so easy for me to get caught up in all the details that I miss out on the big event, can you relate?

This Sunday my pastor gave a timely message about being “present”. He reminded me that it’s in those moments that we experience God, not in the past or in the future, but in the moment that’s right before us. If I can just slow everything down and be thankful for everything God has blessed me with, I will experience real joy, the kind of joy that only comes from God.

So this week I really want to do this, I want to let go of the past, stop thinking about the future and just be present with God, to see all the wonderful things that He’s placed into my life. Such as, my husband that faithfully loves me and supports me, sacrificing for his family and honoring God with his good character. My oldest who’s experiencing stability for the first time and remains optimistic after all he’s been through. His resilience alone is miraculous! My middle child who at 9 years old stood before his church today and prayed for adults asking for prayer. His heart and compassion are a true blessing from God. And my little one who’s needs are small, reminding me that my presence alone is enough for him, as he hugs me and climbs into my lap whispering “I love you”.

I don’t want to miss out on anymore this Christmas season, so I’ll start by opening my eyes with a moment of gratitude. I am thankful, so very thankful...

* * *

Tonight, while taking my middle son to Christmas shop for his brothers, I made an effort to be in the moment. I unplugged my phone and followed his slow, thoughtful pace. As we were leaving the store with packages in hand, I heard my son softly say, “I can’t wait to give my brothers their gifts, I’m so excited, I feel my heart getting warm inside.”

Had I hurried my son or checked my emails, I would’ve missed out on one of my most favorite moments this season.

* * *

If you’re like me and have a hard time being “in the moment”, here are a few suggestions from my pastor:

• Count your blessings, write them down!
• Recount your “highs” and “lows” of the day as a family, see what really mattered at the end of the day.
• Take pictures to become aware of those precious moments surrounding you.
• Start out your day with a prayer of thanksgiving.
• Receive Communion.

Fighting the Stigma of Mental Illness

2011-12-15T13:39:00.000-08:00

(Above: Lets Erase the Stigma Video)

Robert Villanueva

Today is Part 2 of my interview with Robert Villanueva. In my last post, Meet Robert Villanueva, Robert shared about his personal experience of “living well with bipolar disorder”, today he shares with us the organizations he’s involved in to help fight the stigma of mental illness. I can’t be more thankful of Robert and advocates like him who bravely put a face to mental illness, who stand up for those who aren’t able to and for fighting to make a change that will help all of our children. If you haven’t already, check out the links below and see for yourself the organizations that are working to make a difference!

Can you tell us about the organizations you are involved with and what your role is?
First let me start by saying I really like your comment “fighting the stigma of mental illness” because it really is a fight across the globe. Many strategies have been used and unfortunately we have been losing those battles. People like you and I are going to make a difference in winning the war against the stigma of mental illness. So let me share some information about the organizations I work with.

NAMI
National Alliance on Mental Illness: www.nami.org
I am currently a national Trainer of Trainers for their “In Our Own Voice” program. IOOV is a public education presentation that is interactive with its audience, presented by two consumers/people diagnosed with a severe mental illness along with a 15 minute video. I was fortunate enough to be asked to be filmed for the video that is shown across the nation. Sometimes it can be intimidating to see myself on a huge screen with a big ol’ head. (LOL!) I also get the opportunity to represent NAMI in the greater Bay Area as a public speaker for events such as Stanford Education Days and other mental health events at universities.

LETS
Let’s Erase The Stigma, An Educational Foundation: www.lets.org
For the last year I have been on the ground floor of a new non-profit based out of Southern California that reaches out to the student population opening up discussions about erasing the stigma of mental illness. My role in this process has been to help create infrastructure, policy, guidelines and strategies to further the vision of being proactive in education of mental illness. I have found a real passion in seeing the student population embrace the idea of having LETS clubs on their campus. My current title is LETS Assistant Research Director. This position has included development and implement pilot research data.

A2A
Adversity 2 Advocacy: www.adversity2advocacy.org
I currently sit on the Board of Directors for A2A. The vision of A2A is “the empowering process of turning one’s adversity into advocacy on behalf of others facing similar challenges”. My challenge of living with the diagnosis of Bipolar Disorder is showcased on the main website. The stories talk about individuals that hit a stage of recovery and are able to advocate for others to help them reach a state of recovery. Part of this process has been being on the team of creative people from a diversity of sectors that have a heart for individuals and families struggling with adversities. The founder, Jeff Bell, is a friend, colleague and inspiration to myself and others at A2A.

What made you decide to go public with your mental illness and focus on fighting the stigma?
The actual moment I decided to go public and share my story was at a peer support group. It was an epiphany when I saw a women crying, shaking and terrified that their co-workers and family may find out she was diagnosed with Bipolar Disorder. I noticed others in the room consoling her and telling her not to tell anyone because they wouldn’t understand. At that moment I realized that if we were ashamed of having a disorder, then how can we expect others to understand or accept us. I didn’t want to live in a world where I had to be ashamed of having a “physical illness”, “brain disorder” or “chemical imbalance”. I couldn’t imagine the stress of keeping that secret every time I went to work, saw my family or hung out with friends. So my solution was to let people know out right if the subject came up that I was diagnosed with Bipolar Disorder 10 years ago. It takes the pressure off me and in most cases opens up dialogue with others about mental illness.

How long have you been working as an advocate for mental health?
It’s hard to believe, but I have been an advocate for about 8 years now. It started by talking to others in peer support groups and eventually becoming a facilitator of peer support groups. I had the opportunity to become an IOOV Presenter and a year later was asked to become a California State Trainer for the IOOV program. Shortly after, the same year, I was invited to St. Louis to become a Trainer of State Trainers. It is really awesome to meet people from across the nation that have the same passion and goal of helping others by telling their own story. Along the road I have spoke at prestigious universities (Stanford, Cal, Temple) across the nation and abroad in the UK. I guess you can say that not “keeping my mouth shut” has helped me get stable, live in recovery and flourish in the advocacy work I do.

Can you tell us about the goals you have for the programs you’re involved in?
Currently I spend a lot of time, energy and brain power on LETS and A2A.

LETS is going to change the world one club at a time. We are working with an amazing team around the nation to take a new innovative approach to erase the stigma of mental illness. My role is to measure the outcomes of the clubs using pilot data that includes surveys, questions and demographics of the clubs. We are working towards funding further research, educational programs for students of all ages, and mentoring opportunities to LETS Club members.

We have neglected the needs of educating our children about the devastating effects of mental illness on individuals, families and the community at large. In a recent, not yet published study out of Cal Berkeley, we found that attitudes towards people living with a mental illness is reported 6% more negative than a decade ago. For the first time, we are reaching out to students and asking them “can you help us erase the stigma of mental illness?”. They have given us a new hope, tons of energy and a new avenue to break down the walls of stigma.

A2A is an online non-profit that is dedicated to showcasing the amazing stories of triumph and inspiration. The website features individuals that have lived with or are living with lung cancer, ALS, schizophrenia, bipolar disorder and stroke. These individuals are a small example of advocates that want to help their peers achieve a good quality of life through service, education and cutting edge research. We know that when we help others, we are helping ourselves. A2A will connect people who have experienced full recovery to those who are currently experiencing an adversity, in the hope that we can then get them involved in advocacy and be an inspiration to others.

The number one question that I get is “how can you do what you do?”. My answer is “I have know idea”. Only by my faith, the kindness of others and the advocates that paved the roads ahead of me have I had the opportunities and adventures that I have had. And what amazing adventures I’ve had...

Thank you so much Robert for doing what you do, you truly are paving the road for the next generation and Moms like me thank you from the bottom of our hearts!

If you’d like to reach out to Robert with feedback or questions, leave your comments below, he’ll be checking back to read your responses and if he’s anything like me, he loves to read the comment section, so don’t be afraid to chime in ; )

* * *

NAMI: National Alliance on Mental Illness
www.nami.org

LETS: Let’s Erase The Stigma, An Educational Foundation
www.lets.org

A2A: Adversity 2 Advocacy
www.adversity2advocacy.org

Video Provided by:

Uploaded on YouTube by funluver9394 on Jun 19, 2011

Meet Robert Villanueva

2011-12-13T21:36:00.000-08:00

Today I’m so excited to introduce you to a inspirational man who in his own words is “Living well with mental illness”. His name is Robert Villanueva, a National Trainer of Trainers for NAMI and the West Coast Regional Director of LETS (Lets Erase The Stigma). The first time I saw Robert was in a YouTube video for “In Our Own Voice”, where he shared some thoughtful questions about the stigma in society and how those living with mental illness are affected. He also gave a face of an adult who was living with Bipolar Disorder when at the time I didn’t know what that would look like other than images of famous people having public meltdowns. For me it was very encouraging and gave me so much hope for my son.

Since that initial video, I’ve had the opportunity to hear Robert speak on behalf of NAMI at Stanford’s Annual Mood Disorders Education Day the last two years and this past year I met him in person. Today, Robert has graciously agreed to meet with us and share his story in a 2-part post. Today I’ll be asking questions about Robert’s story and later this week we’ll continue this interview with another post about the programs Robert is involved in and his journey to fight the stigma of mental illness. I like to think of Robert and others who are publicly fighting the stigma of mental illness as soldiers who are fighting for our children’s future! Thank you Robert for making a difference for families like mine and bringing hope to the next generation!

* * *

Welcome Robert to my blog, I’m so excited to share your story and the role you’re taking in fighting the stigma of mental illness. To start, can you share a little about yourself?
I grew up in the East Bay and attended Castro Valley High School. Home was very ruff but I had some great teachers and coaches along the way. After graduating, going to college was a distant dream, due to unstable parents and the need to move forward in my life. I chose to coach wrestling and found a job as a garbage man... fast forward to my early to mid-twenties, as stated in the magazine “One in Four ” published in the UK, I would be considered an all American guy. Good husband, loving step-dad, coach, in great physical shape and all around friendly guy.

When did you first experience symptoms?
At the age of twenty-eight is when they started to disrupt my life. Looking back, I am sure I experienced bouts of depression and manic episodes. Being a father, husband, active member of society, the symptoms started affecting all aspects of my life. My family suffered the most during those years. I missed work, was not as loving and emotionally unavailable to my wife and kid.

What mental illness have you been diagnosed with?

I was originally diagnosed with clinical depression at the age of twenty eight. Later at the age of 31, while locked in a psychiatric unit, I was diagnosed with Bipolar Disorder.

How do you manage your illness?

I start every day with making my bed. There was a time in my life when I was in that bed 16 hours a day and didn’t see my friends or relatives for two months. My first step back to health was to make my bed, I knew that I was too lazy to make it again and get in the shower. Other days I was in such a hurry that I would start heading to the shower but then stop and tell myself “take the time to make your bed”! It sets the consistency on a daily basis that I need to remind myself how fortunate and blessed I am that I have a nice warm bed to come home to. Now I have seven pillows, shams and a Winnie-the-Pooh pillow that I have had since the day I left my family and lost my home.

Did you always know that something wasn’t right or did it come out of nowhere?

It was progressive but unnoticed by me. Later after the diagnoses, people came to me and said that they had suspected it for a while. My reality was going a thousand miles an hour or crashed like a log. It was the only life and reality I knew.

Do you have a family history of mental illness?

Great question! After I accepted my illness and became more educated, my family history showed a destructive blueprint of mental illness. At the time I did a study on my family history, I discovered that the longest a male survived through four generations was to the age of fifty-eight. At that time, the oldest male cousin was 42 and I was 33. My mom was diagnosed with Manic-Depression in the seventies and now we know it is Bipolar Disorder. Unfortunately she chose to self-medicate with drugs and alcohol.

As a man, what unique struggle did you face in coping with your illness and getting treatment?

I had no one to talk to, identify with, mentor me or even tell me where to get help. I am a very tuff guy, physically fit, hard worker, so the illness put me on my knees and weakened me physically, emotionally and took away the ability to support my family. The stigma and shame were the worse. I was experiencing clinical depression and lack of energy, not a girly-man sitting in the corner crying and feeling sad. (My horrible attempt at humor—hope I don’t offend anyone).

How do you get support today?

I start by making my bed. Support comes in many forms for me. Listening to close friends and mentors who give me help and feedback on decisions I make. Accepting the help and kindness of others. Being involved in the advocacy work on a daily bases. Doing this interview, flying over seas, being involved with great organizations such as www.lets.org our www.adversity2advocacy.org And recently I have been blessed by an amazing woman who agreed to be my loving wife :-).

Obviously you’ve gone public with your illness, but do you tell everyone?

No, but yes! Like any conversation, it depends on the depth or situation. I have found that how I disclose makes all the difference in the world. I use to say I have a brain disorder, chemical imbalance, suffer from Bipolar, or I am Bipolar. (I wouldn’t say I’m nail fungus if I had just been given meds for nail fungus) Now my standard smooth answer is “I was diagnosed with Bipolar Disorder ten years ago”. People don’t react like before, but become very interested in sharing stories of people that they know that have psychiatric illnesses. They see you as a healthy individual that is dealing with an illness, accepted it and is moving forward with their life. It’s really cool to take the power back from dropping the bomb!

Do you have any regrets with going public?

I still have to appear on Oprah or the dreaded Doctor Phil to officially go public. Dr Oz would be great :-). I do not have a regret in the world about sharing my story. I don’t always do a great job or reach an audience the way I would like to. But my Grandma always said “do the right thing and God will know.” I feel I am doing the right thing for all of us and the next generation.

Have you yourself faced any challenges with the stigma of mental illness?

That is a big YES! I was ashamed that I was sick. I experienced the worst kind of stigma which is self-stigma. I limited my self worth, personal goals, friendships, romances, jobs and the list goes on. But it was seeing a women in our Peer Support group that was terrified to have her family find out that she was diagnosed with Bipolar that changed the way I now deal with stigma. She was crying, shivering, breaking down that she had to go back to work and that her co-workers may find out. The group consoled her and told her not to tell anybody. I couldn’t imagine this sweet person scared every day at work, every holiday. So I stood up and said “I will tell anybody because I don’t want to live in that fear and if we don’t tell our story, then we only perpetuate stigma!!!”

What have you learned through your journey?

The truth will set us free! Education is power to heal and move on! The kindness of others is the catalyst of recovery! The more I can help others, the healthier my life has become!!

What advice can you give parents who are raising kids with mental illness?

During my talks, that are very interactive with the audience, this is always the hardest question. I vividly remember a father, close to my same age, with tears welling up in his eyes, ask me “what can I do to keep my daughter from hurting herself?”. I replied “I don’t know, I wish I did”. That Sunday as the tears dropped down on my Bible during the music at service. I found an answer, not THE answer, but an answer, that kids and parents need to be educated, supported and involved before a crisis ever happens. So my answer is “get involved with the Lets Erase The Stigma educational foundation (lets.org)” and bring mental health education from the bottom up from our students, to parents, teachers, administrators, on up to the president himself. It is student run, all inclusive to the student body and it creates a sense of support, empowerment and community on campus in support of breaking down the walls that stigma builds.

Thank you again for giving me a platform to open much needed conversations about mental illness.

I wish you the best of health to you and your family.

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Check back for my next post as Robert shares about the organizations he’s involved with and how it can help our children!

Robert’s YouTube Video:

http://www.youtube.com/watch?v=Vso_mcjwdK0

Photo Credit:

Adversity 2 Advocacy

http://adversity2advocacy.org/robert-villanueva

Holiday Stress

2011-12-11T21:07:00.001-08:00

If you’re a mom multi-tasking during the holiday season, you’re likely to suffer from some holiday stress. I think I have a full blown case of it and I’m certain it’s contagious. Which is exactly why I’m trying my best to find my calm. I have so many things to do with so little time and the more stress I have, the more stress I spread to my family.

I particularly notice that my oldest son is extra sensitive to my emotional state. He has a tendency to read my emotions, even when I’m trying to hide my stress, if it’s there, he can pick up on it. Which can have a negative impact on his stability.

So my first line of defense has been prayer. I’ve been doing more of that lately. Tonight I also went on a date with my husband to reconnect and push my work to the side. I’m also trying to focus on “one day at a time” and exercise regularly. But I know the week ahead will bring many more obligations and once the kids are on vacation, everything gets more challenging.

So, what are you doing to find your calm in the chaos of the season? Please share!

Brutal Instincts

2011-12-08T18:46:00.001-08:00

Things have been going really good, in fact pretty great this week. I thought that would be the topic for my post, but this afternoon my son had too much stress and couldn’t hold it in anymore. Whether it was the fractions in math, the late start to homework due to an after school activity or the hurt feelings between school friends, whatever it was, I became the target for his meltdown.

It seems to be instinctual for my son. When he can’t take it anymore and he feels he’s lost all control of the moment, he tends to react by threatening to hurt me or damage his brother’s stuff. It seems to be his desperate attempt to regain control. I laugh now, but today he even used his aromatherapy sprays to spray my eyes, something we bought to help him relax became his “weapons”—yes he had more than one bottle in his hands! During this moment I can see a glimmer of happiness on his face as he terrorizes his brothers or hurts me, but it’s fleeting when he realizes that it doesn’t rescue him from his awful feelings inside.

The end result is me holding him on the floor for 30 minutes as he kicks and tries to wrestle away, waiting until he returns to normal. I tried to offer solutions such as taking a shower or leaving the room to decompress, but for him, he seems to desire a fight, if I let go, he immediately rushes to throw something at me or break his brother’s stuff. It’s obvious that his “fight or flight” response is fully activated. Unfortunately for me, there’s more “fight” than “flight”.

Other than meds that are used to prevent these situations, I don’t know what to do when we’re in the moment. The therapy of “practicing going to your room when you’re NOT upset so it become more of an instinct when you are” doesn’t seem to work for my son. And the ironic thing is that, the more stable he is, the more unprepared I am when these situations arise. I really feel at a loss tonight.

Can anyone share how you redirect your child when their instinct is to harm you?

Postponing the Inevitable

2011-12-06T17:23:00.001-08:00

Well we’ve come to a decision about my son’s biopsy and whether to have it done next week with our current HMO or to wait until we’re with our new HMO. There are pros and cons to each side, but in the end, we decided to wait, allowing us to have the procedure done closer to home and reduce the amount of stress our son will be exposed to.

The decision became much easier when I got a call from the nurse today and was told that my son couldn’t have any food or water after 5 AM until the procedure was complete. That would be another 8.5 hours of fasting, along with traveling 3 hours into the city. We also found out that we would have to wait an additional 8 hours after the procedure until we could go home, getting us home around 2 am. It simply is too much for him to go through if we can avoid it.

After many calls, it looks like we can. If we make the switch to the new HMO, I was told that we could get an early appointment, allowing him to do most of his fasting in the night while he’s sleeping. In addition, the commute will be drastically reduced. I also spoke with our current nephrologist and he confirmed that we could safely wait to have the procedure later.

In the meantime, I’m getting files transfered and trying to get an appointment in the books with the new nephrologist by having the two doctors talk over the phone. Our current doctor will make the call sometime this week. In the meantime, I already have the first appointment in place in January with his pediatrician to request the referral. I think I’ve done all that I can, I’ve talked to everyone involved and it seems like this should be a smooth transition.

Honestly, I know there are no guarantees, it could get really messy, but I have to make the best decision with the information I have. And since I’m being honest, can I say that I am so tired of making important decisions, it seems there’s always another one around the corner.

Gene that Links to Suicide Risks

2011-12-04T23:28:00.000-08:00

Recently I came across a news article that reported that researchers have found gene variations that are linked to one of several factors affecting suicidal behavior. According to the article, “90% of people who have died by suicide had at least one mental health disorder, including schizophrenia, depression, bipolar disorder or general mood disorders.” This research is essential for our children, if they can target a gene to prevent suicide, we can save so many young lives. I’m excited to see where this research will lead. I’m confident that in my son’s lifetime we’ll have so many more answers and treatment options. I’m so grateful for the work that’s being done in the field of research, it is our future!

Read the article yourself to get all the details!
http://www.medicaldaily.com/news/20111007/7337/suicide-mental-health-gene-variations-bdnf-brain-derived-neurotrophic-factor-mood-disorders-sch.htm

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References:
Medical Daily
By Medical Daily Reporter
http://www.medicaldaily.com/news/20111007/7337/suicide-mental-health-gene-variations-bdnf-brain-derived-neurotrophic-factor-mood-disorders-sch.htm
Published: Oct. 7, 2011
Consulted: Dec. 4, 2011

More Decisions Ahead...

2011-12-01T19:28:00.001-08:00

Tonight I came home from the gym and my son came up and gave me the biggest, longest hug. It was fantastic! I’ve noticed that he’s doing so much better now that he’s back in school. I think we all realized the strain that Thanksgiving break caused, it was a whole week off with a lot of boredom, which unfortunately leads to trouble. Anyone else experience this with their child?

Now that things are going smooth again, we’ve been busy trying to decide whether or not to do the kidney biopsy in a week and a half (our current appointment) or wait to do it with our new HMO. The advantage of waiting is that we won’t have to travel 3 hours out of town to a major city for the procedure, instead, we’ll be much closer to home. Our concern with this trip is that after my son has the procedure, he’ll have to spend another 4 hours in the hospital, making it a whole day event. When we head home, he’ll be coming off the medications used to put him under. In the past, after his MRI, we had the opportunity to see that this transition can be very unsettling, bringing out cycling moods and intense anger or sadness hours later. My concern is that we’ll be stuck in city traffic, 3 hours from home and he’ll become unstable. Not fun!

The downfall of having it done with our new HMO is that we’ll have to jump through several hoops to get our referrals and approvals set in place. Delaying the needed procedure. Also not fun.

Hmmm... decisions, decisions...

Get the Family Together for Fun!

2011-11-29T21:16:00.000-08:00

Trying to play a family game with a child who has mood issues can be a challenge for the whole family. My son can easily get stressed out or too competitive, taking away any enjoyment possible. But over the year we’ve found great success with the game Hedbanz. It’s a simple game that has an easy flow without a lot of complicated rules. If you’re out looking for a family game for Christmas this year, I highly recommend it!

Sorry if this is starting to feel like an advertisement, I promise you it’s not, I’m just excited to share something that works! I’m not much of a game girl, I get way too impatient, but this game was a blast even for me.

To play, each family member wears a goofy headband around their forehead then they stick a game card into the headband with the image facing out. It’s completely ridiculous looking which adds to the fun of the game. Then each person takes a turn with a sand timer asking questions about what they may be (the image in the card). So I may ask:

“Am I a food?”

“Am I an animal?”

The family can only respond with “yes” or “no” answers. Once you get a “yes”, you can narrow your questions to a more specific area.

“Am I an object?”

“YES!”

“Am I an appliance?”

“Am I a toy?”

“Am I a ball?”

You have until the timer goes out to guess what you are. If you guess right, you earn a point, if not, it’s the next person’s turn. For kids that easily feel defeated, it helps that you get to continue with your same card on your next turn, no starting over until you guess right. I love that you can narrow the game to be short or long. In some cases we declare a winner after someone guesses correctly 3 times, other games we play longer.

This is one of those games where you spend more time laughing than anything else. My kids love it and it seems effortless for my son. It’s a great way to get the family together for some low key fun.

Here it is on Amazon (You may find it cheaper in Target):
http://www.amazon.com/Spin-Master-Games-6014346-Hedbanz/dp/B003AIM52A/ref=sr_1_1?ie=UTF8&qid=1322620946&sr=8-1

The Decision is Made

2011-11-27T21:04:00.000-08:00

Well the holiday is over and now it’s back to serious business. Our pediatric nephrologist has made the final decision to do a biopsy on my son’s kidneys to evaluate the damage that has taken place over the years from his kidney reflux (a birth defect), allowing all doctors involved to make the best decision for my son’s care.

I’m not surprised that this is his final decision and I know that it was seriously considered being that he consulted multiple doctors who all felt this was the best thing to do, but it doesn’t take away my concerns. Any medical procedure comes with risks and I hate risks.

In the meantime, we have to get the procedure completed by the end of the year since our insurance is switching over to Anthem Blue Cross HMO. I realize I went against the grain in choosing an HMO, but we felt the decision was easy because the doctors we wanted were all covered by this plan and if he were ever hospitalized for psychiatric care, he will be sent to the best hospital in our area. In addition, we were very nervous about the unexpected fees that we may incur. I don’t think we could afford to cover 10% of major surgery and with my son’s kidneys, we need to be prepared that this may be in our future someday.

After all that is said and done, I’m happy to have finally made the decision with our health care plan and I’m excited to meet our new doctors. I don’t want to get my expectations up, but as for right now, I have a good feeling about it.

Family, Feast and Fun!

2011-11-24T23:45:00.001-08:00

Today was a great day with family and a delicious Thanksgiving feast. Both my husband and I woke up in a great mood, there was a feeling of optimism and appreciation for all we have to be thankful for. It’s been about 5 years of really tough stuff and this year we felt like we could sit at the table feeling at peace.

After a fun day of spending time with family we love so much and being spoiled by my awesome mother-in-law who worked in the kitchen the entire day preparing an incredible feast, I’m now off to do something ridiculus, I’m going into Target at midnight to do some black friday shopping. Go ahead, make all the jokes you want, yes I am one of the wild ones. But I do have my limits, no standing in line outside the building, so I’ll be following the crowd in to pick up their leftover scraps. Hopefully I can save our family a few bucks. If not, I’ll be back in bed and sleeping in, there will be no early rising tomorrow.

Happy Thanksgiving Everyone!

Thankful for the Small Moments

2011-11-22T21:30:00.000-08:00

With Thanksgiving break in full swing, we’re seeing our son struggle with all his free time. The change in structure is difficult for him and he seems to be off lately. Today, I spent my time keeping him from bothering his brothers by redirecting him into projects or activities that he can do by himself. Unfortunately, I had to do this over and over and tonight I feel pretty exhausted. I’m also concerned that he may be falling below his therapeutic range.

But tonight, I want to focus on the positive. It’s the small moments that for most seem pretty ordinary.

It’s the moment I see my son smile.

It’s the time we went on our first night walk, laughing and connecting like never before.

It’s the evening I picked my son up from a birthday party and he asked to stay longer.

It’s the day my son swam across a lake with his brothers, giggling like little boys should.

It’s the day my son decorated our door with welcome home signs for his Dad after a business trip.

It’s the day my son did his homework without going into a rage.

It’s the moment my son tries to help his younger brothers.

It’s the moment when my son agrees to be flexible.

It’s the silly moments where our house fills with laughter over farts and poop jokes.

It’s the moment when we all cuddle on the couch to watch our favorite show.

It’s the moment when my son opens up his heart and shares his life with his “uncool mom”.

It’s the moment when I feel like we’re just an ordinary family, living an extraordinary life.

Tonight I am thankful for all this and more. I’m also thankful for all of you who follow my blog, allowing me to share our journey and support us along the way.

Thank you from the bottom of my heart.

When Medicine Got it Wrong

2011-11-20T23:48:00.000-08:00

Thanks to my new twitter account, I came across Katie Cadigan’s tweet about her documentary When Medicine Got it Wrong. This film is about a group of ordinary parents in 1974 that publicly refused to accept blame for causing their children to have schizophrenia. It was the first of its kind, coming out of an era where mental illness in children wasn’t accepted. This group of parents came together to fight for their children and brought advances in understanding, treatment and brain research.

It’s pretty amazing what a few parents can do. This gives me hope for our future, maybe we too can make a positive change!

* * *

Where to view the documentary:
http://www.der.org/films/when-medicine-got-it-wrong.html

The Official website:
http://www.whenmedicine.org/MedW/Home.html

Peer Perspective

2011-11-17T20:48:00.000-08:00

Yesterday we had our parent teacher conferences. I was very pleased to see that my son is performing well academically and that his teacher continues to support us and make modifications when necessary. One of the modifications she made at the meeting was to allow my son to slip quietly into the library to get a head start on his homework 15 minutes before class ends each day. We’ve found that my son is much more willing to do his homework when in school, but once at home he gets overwhelmed with the amount of work and starts to stress out, which as you can imagine, shuts down all productivity. So we agreed that giving him a head start at school will help him not feel so overwhelmed and give him a sense of accomplishment before the stress sets in.

The highlight of the meeting came when the teacher shared that earlier in the week she had a conference with another student who sits at my son’s table. During the meeting the girl showed her parents her desk. As they were checking it out, her Mom asked who she sat next to in class. The teacher overheard the student say, “I sit next to (my son’s name) and he doesn’t say mean things like last year, he is really nice now.”

It was awesome to hear a peer perspective of how far my son has come. Things are not perfect by any means, but the change is monumental!

Stanford University Mood Disorder Videos

2011-11-14T19:36:00.001-08:00

Stanford University has recently added videos to their website for each speaker presentation for the 7th Annual Mood Disorders Education Day that took place earlier this summer. Click on the link below and you’ll see the first video of Terence Ketter, MD with the welcome and intro. Below this is a list (example below) with a link to “watch video” for each individual presentation. For those with children, you may be interested in the Child and Adolescent Mood Disorders Update by Manpreet Singh, MD. This is definitely worth your time!

Link to all the videos:

http://bipolar.stanford.edu/video/index.html

Here’s a list of the videos offered:

Welcome and Introduction to the Stanford Mood Disorders Center
and the National Network of Depression Center
Terence Ketter, MD
Director, Professor of Psychiatry and Behavioral Sciences,
Chief of the Bipolar Disorders Clinic

Stress and Depression
Alan F. Shatzberg, MD
Professor of Psychiatry and Behavioral Sciences,
Director of the Stanford Mood Disorders Center

Neuromodulation Treatments for Mood Disorders Update
H. Brent Solvason, MD
Assistant Professor of Psychiatry and Behavioral Sciences

Child and Adolescent Mood Disorders Update
Manpreet Singh, MD
Assistant Professor of Psychiatry and Behavioral Sciences,

Co-director of the Pediatric Mood Disorders Clinic

Sleep and Mood Disorders
Allison Harvey, PhD
Professor of Clinical Psychology, University of California, Berkeley

Perspectives from the National Alliance on Mental Illness (NAMI)
Robert Villanueva, NAMI

Perspectives from the Depression and Bipolar Support Alliance (DBSA)
Katherine Lere, DBSA

Nature vs. Nurture in Mood Disorders
Shefali Srivastava, MD
Clinical Instructor at the Bipolar Disorders Clinic, NIMH Mood Disorders Fellow

In case you missed it, here’s a link to my post reviewing all the info I gathered after attending this event and participating in the Q&A session with Dr. Singh:

http://mysonhas2brains.blogspot.com/2011/07/my-visit-to-stanford-university-2011.html

A Game of Catch

2011-11-13T18:12:00.001-08:00

Today my husband played a game of catch with my son. This may seem insignificant to most, but to us, this was a huge step.

There was a time when my husband had to let go of such dreams. All of the typical things a Dad dreams of doing with his son were not possible because of my son’s moods. He was either too depressed, anxious or agitated, this of course stole any self confidence and made him give up easily when frustrated or refuse to play all together. But this weekend, my husband bought a new football and tried once again to play a game of catch.

I wish you could’ve seen the smile that was on both of their faces, the pride my son had when he caught the ball or even better, when he could throw it past his Dad. What was a game of catch to most, was a dream come true for us.

Facing the Inevitable Next Step... More Medication

2011-11-10T22:27:00.000-08:00

I think most of us would agree that medicating your child is a very scary step. For me, I delayed this step, even though our doctors encouraged it from the beginning, because I was scared of the side effects as well as the judgements of society. Let’s face it, people aren’t very kind to mothers who medicate their children. More than once, I’ve gotten the hard, judgmental looks from other mothers, I’ve received the nasty emails calling me bad names and have read more than my fair share of criticism online. But I made this step, accepting this ridicule because my son needed it and was begging for help. When everything else failed, we turned to medication.

But what I wasn’t prepared for was the inevitable next step... more medication.

I’m sure some would assume that once you’ve open that door, it would be easy to add more medication when the doctors advised it. But honestly, I think this step was even harder.

You’d think I would’ve been ready for this step since I’ve read enough forums to see that many parents of mood disorder children achieve stability with multiple medications. But it still terrified me, even to this day. I don’t want my child on a grocery list of meds. But I can see how it happens. One medication treats one symptom, another treats another symptom. Then if your child gets a side effects, another medication may be introduced for treating that. The list can go on and on. Also, as another medication is added and you finally reach the utopia of stability, nobody wants to mess with the cocktail of meds, what if the house of cards falls when you remove just one of the medications. The entire treatment process is overwhelming, stressful and pretty much sucks!

About a year ago, my son was going through some very violent rages, psychosis and suicidal thoughts. I remember many followers suggesting that my son needed more medication. One in particular, advised me that his rages didn’t have to be like this and that we could get it under control if we would just add another medication. Being scared of this next step, I didn’t do anything, but endure more rages and let my son suffer. What was my reasoning? I was scared that the side effects would be worse than the symptoms. I was worried that he would end up more sick. As it turned out, I was wrong.

Since that time, we’ve added another medication and for the first time we’ve experienced what true stability is. Things are not perfect, but from where we came, it’s close enough. His symptoms are much better under control. He hasn’t seen any monsters or had suicidal thoughts. His rages are very rare and never as bad as they use to be. For the first time, we’re able to put therapy into practice and as a family, we’re slowly healing from all we’ve been through. Now looking back, I regret not helping him sooner. I regret that I let my fear hold us back.

But you know the ironic thing, adding medication doesn’t get any easier. If our doctor would suggest another medication today, I would research, evaluate the risks verses the benefits and pray. I would still have that nervous feeling in my stomach and take the decision very seriously. However, I’m confident that I would no longer let the judgements of others persuade my decisions, I’ve learned long ago that there are many “haters” that have no idea what your child is going through and are in no position to judge, but will do so anyway. I wish I was prepared for that in the beginning.

This is a long journey and unfortunately there are no right answers, just many paths and in the end, you have to trust your instincts. You know your child best!

* * *

This post will appear as part of the 12th edition of Best of the Best on the S-O-S Research Blog. Check there after the 15th to read more entries by other bloggers who are sharing special moments in raising children with invisible disabilities.

Visit this link after Nov. 15th:

http://sos-research-blog.com/11/s-o-s-best-of-the-best-edition-12-medication-use-with-special-needs-kids/

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A Few More Posts Regarding Our Journey with Medication:

When All Systems Fails:

http://mysonhas2brains.blogspot.com/2010/02/when-all-systems-fail.html

Medicating My Child:

http://mysonhas2brains.blogspot.com/2010/02/medicating-my-child.html

Lithium at 29 Days:

http://mysonhas2brains.blogspot.com/2011/07/lithium-at-29-days.html

When Church Doesn’t Welcome You

2011-11-08T21:05:00.000-08:00

Over the past year I’ve received a handful of emails from parents that have been pushed away from their church. In some cases, it’s due to ignorance. As in the case of the family that was told that their child’s mental illness was a direct result of the parent’s sin. Other times, it’s more subtle, maybe their child is too loud during service and can’t sit still, taking away from the “holy” experience, bringing on hushed criticism or rude looks. Either way, the intolerance is felt and families leave their church when unfortunately, they need it most.

Forgive me for preaching, but isn’t God for the weak and broken hearted? Didn’t Jesus scold the disciples when they tried to keep the children away from Him? The church needs to be a place for those that seek Him, even if that means dealing with a loud, unruly child. I know in my heart that God would want it that way. A relationship with God is not perfect, it isn’t about pressed pants and perfect families. God’s family is messy in everyway and God wants us to run to Him when we are hurting, He wants to carry us when we no longer have the strength to go alone.

It breaks my heart and to be honest, makes me angry to hear of families that need God, that desire to be part of a church family, yet have stopped attending because they’ve been turned away directly or indirectly.

I hope to encourage you that there are churches that are accepting, that have awareness or are willing to learn about our children’s needs. They’re dedicated to supporting our families and want to help us in a spiritual as well as practical way.

After over a year of searching, we’ve been very fortunate to have found such a church. Since then, 3 years later, we’ve been offered sitters, meals, one-on-one support and constant prayers. Just this past summer, our Pastor went on a sabbatical with his family for 3 months. During this time, he was suppose to leave everything behind and focus on his family and God so he could recharged himself. He had intended on leaving all prayers for his congregation with his staff, but later shared that my family kept popping into his mind so he finally decided to “pack us up” and take us on his sabbatical where he prayed for us. Besides these abundant prayers, our church has helped to offer solutions for our kids, especially our oldest son, who has a hard time sitting through the services. They allow him to bring his iPod or small toys when he isn’t in a mood to participate, they provide “family tables” with paper, crayons and snacks to keep the kids occupied and they offer a hug when we show up late, knowing that it must have been a difficult morning. To this day, I still get emails asking if there’s anything else they can do to help our family.

I realize how blessed we are to have found this special church where we can grow with God as a family. If you are part of a church and happen to be peeking in on this post, reach out to your staff to see what can be done to help families like myself that are needing accommodations or reach out to the family that has disappeared when it became too hard to attend service and invite them back.

And for the family that has been hurt by their church after being pushed away, keep searching and don’t give up until you find your new church family. Not all churches are the same, but God remains constant wherever you go. As difficult as it is attending church with my bundle of boys, it’s been a blessing in so many ways and was worth the hard work to find it.

* * *

Can you share any successful accommodations you’ve used with your own place of worship?

A Special Request

2011-11-06T20:22:00.000-08:00

When talking with my middle son about how to help him cope with the stress he sometimes feels from his brother, he suggested doing more family fun nights.

For us, a family fun night may be as simple as playing a board game or watching a special show together, nothing too fancy. But I will admit, at the end of the day when things are rough, it can be hard to pour into my kids with this kind of energy. Playing with my kids is hard work, there’s a lot of referring and negotiating that needs to take place, including the typical “stop touching your brother and watch the movie” moments. Depending on how stable your child is, this may need to wait until things are better, but if things are on the upswing, I think we all can agree this is a good idea.

But what I didn’t realize was the kind of impact it had on the siblings. My middle son explained this when he said, “We need to do more family fun nights because it helps me feel safe while having fun at the same time. If you and Dad are there playing a game with us, I feel like you can protect me and I get to relax and enjoy my family.”

Pretty insightful kid, huh!

Uh Oh... HMO or PPO?

2011-11-03T19:51:00.000-07:00

Ok, I need your feedback. Right now we’re trying to navigate our health insurance for next year. We can choose from an HMO (Anthem Blue Cross) or a PPO (Aetna for basic health and Magellan for mental health). I’ve read a little about the positives and negatives of each, but was wondering what your experience and preference was. Care to share?

Prayer is Requested...

2011-11-02T21:54:00.000-07:00

Tonight I read the heartbreaking post by my fellow blogger Accidental Expert at Raising Complicated Kids. She’s in desperate need for prayer and is asking for it tonight. Please go to her blog now to read her story and lift a prayer up for her son and her family. We may be divided by distance and online anonymity, but we can come together in the name of God.

A Call To Prayer:
http://accidentalexpert.blogspot.com/2011/11/call-to-prayer.html?showComment=1320295155784#c3472580157514755387

Ride Don’t Hide

2011-11-01T21:43:00.000-07:00

Have you ever been on a long bike ride? To the point of getting blisters and a good sunburn? Check out this hero, his name is Michael Schratter, a Vancouver school teacher and newspaper columnist who set out on a 40,000 km journey across 30 countries all to raise funds for mental illness!

Along his journey, titled Ride Don’t Hide, he’s sharing stories of mental illness and bringing awareness to the stigma surrounding it. All funds raised will go towards children and youth suffering from mental illness.

In an interview with The Vancouver Sun, Michael, who was diagnosed with hypomania (a mild form of bipolar disorder) shared that there is a stigma around those with mental illness and it was time to bring it out of the shadows.

“Hollywood and the media have painted mental illness in a really scary light, that the mentally ill are dangerous. The only time the mentally ill make the newspaper is when something horrific happens so it’s no wonder that everyday people like myself don’t want to talk about it.” (The Vancouver Sun, September 16, 2011)

Michael’s ride started on August 17th, 2011 and will end on November 12, 2011, just 10 days away! Visit his website today to donate, add to the stories being shared or just to leave a message of support.

It’s exciting to see individuals step up to make a difference in a big way. Way to go Michael!

http://www.ridedonthide.com/

* * *

References:
The Vancouver Sun
BY KIM PEMBERTON
http://www.vancouversun.com/health/Teacher+crazy+dream+gets+boost+with+leadership+award/5412128/story.html
SEPTEMBER 16, 2011

Consulted: Nov. 1, 2011

Boo!

2011-10-31T09:59:00.000-07:00

This weekend we went “Booing”! It was a blast! All three of my boys dressed up as dark ninjas as they set out to deliver goodie bags undercover to friends in the neighborhood. Their mission wasn’t complete until they rang the door bell and hid in the nearby bushes to watch the unexpecting homeowner open the door and discover their surprise of candy and small toys. You know, the good stuff like plastic spiders and vampire teeth. As “Mama Bear Ninja”, my role was to hide out in my cool mini van down the street and wait for my 3 giggling boys to return with their mission complete.

There was code names, abandoned missions and serious fun! I can honestly say that I felt my heart beat a little faster with excitement as I watched my 3 boys take cover in the dark.

These are the moments I’ve longed for, it’s pure joy to live it!

Happy Halloween Everyone! Now go make some memories!

On Shaky Ground

2011-10-28T07:24:00.000-07:00

As we wait to hear from our pediatric nephrologist, I got some upsetting news. My husband’s company is dropping our HMO. This comes as quite a shock and has left us pretty disappointed. I honestly felt like I could throw up when I heard the news. If you’ve been following my blog for a while, you may recall that we’ve had a tough time finding the best doctors for our son’s case. We’ve gone through numerous therapists and several psychiatrist to find those that have the best experience and skills. It may not be perfect, but I can honestly say that we finally felt comfortable with our team and trusted the care our son was receiving.

Now we have until the end of the year to find a new team within a new HMO. Considering the critical time with our son’s kidney concerns, this couldn’t have happened at a worst time. Fortunately, our pediatric nephrologist feels comfortable referring us to somebody on the outside and feels confident that he can perform the biopsy before the change, if that’s his final decision. As for our mental health team, I’ve got some work to do.

It’s ironic that once you feel that things are finally on solid ground, there’s another crack in the dirt.

Kidney Update

2011-10-25T21:52:00.000-07:00

This week we met with our son’s psychiatrist and nephrologist to evaluate our son’s kidney damage (caused by a birth defect) and his ability to stay on Lithium and Trileptal. Both doctors feel that it’s imperative that our son maintain mental stability during these crucial years of development. As our psychiatrist said, “It is not just gratifying, but really critical for your son’s emotional and social development that he have some stability.” He then went on to say that he would not watch our son progress into renal failure, instead he will monitor him closely and stop medication if it becomes a serious risk.

The final decision is based on the direction of our pediatric nephrologist who currently is seeking multiple opinions on whether or not to do a biopsy. As he told me yesterday, he feels the risk to his kidneys is very low and his vote is to keep our son on medication. In the meantime, they will increase his Lithium blood draws to every 6 weeks to keep a close eye on his levels and will continue to do regular urine tests to monitor the health of his kidneys.

These decisions are not being made lightly, they carry significant weight and I’m pleased to see our kidney specialist, who happens to be the Subchief of his Department, seeking many opinions with other doctors regarding my son’s case.

As wonderful as it is to see my son thriving right now, the seriousness of my son’s health is taking it’s toll on me. As his mom, I desperately want him to be well and have a lifetime of stability. I can’t help but feel discouraged because not only does he have a mental illness, but he also has kidney problems that may get worse because of the treatment he needs. It feels like a double edge sword. With medication, his kidneys could get worse, without medication his mental illness will get worse. No matter what decision we make, our son’s life is on the line.

Benefits of Lithium

2011-10-23T20:25:00.000-07:00

With all the talk of Lithium and the negative side effects, I thought I would highlight some of the positive effects of taking Lithium for mood disorders.

Research has shown that Lithium may actually repair some of the damage that bipolar disorder causes in the brain. It’s been shown that those with bipolar disorder who take Lithium have an increase in brain volume. This is the opposite effect for those without Lithium who over time show a decrease in brain volume in the hippocampus that directly affects moods and emotions and the amygdale that affects anxiety and mood reactions.
You can read more about it here:
http://blogs.psychcentral.com/bipolar/2011/02/lithium-increased-brain-volume-bipolar-disorder/

In another study from the British Journal of Psychiatry in May 2011, they found that Lithium may protect the brain from dementia by reducing progression of minimal cognitive impairment. Some researchers are even looking into it for the treatment of Alzheimer’s.
You can read more about it here:
http://blogs.psychcentral.com/bipolar/2011/10/bipolar-disorder-dementia/
http://www.telegraph.co.uk/health/healthnews/8476615/Lithium-slows-development-of-Alzheimers.html

Another important find is that Lithium has proven to significantly reduce the risk of suicide, averaging a 7-fold reduction. This has not been proven with any other mood stabilizer but Lithium.
You can read more about it here:

http://www.webmd.com/bipolar-disorder/bipolar-disorder-lithium
http://www.mental-health-today.com/bp/mcl2.htm
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC305265/

Dr. Singh mentioned this research:

http://mysonhas2brains.blogspot.com/2011/07/my-visit-to-stanford-university-2011.html

* * *

References:

Bipolar Beat
Lithium Increased Brain Volumn in Patients with Bipolar Disorder
By Candida Fink, MD
http://blogs.psychcentral.com/bipolar/2011/02/lithium-increased-brain-volume-bipolar-disorder/
Referenced: 10.21.11

Bipolar Beat
Bipolar Disorder and Aging
By Candida Fink, MD
http://blogs.psychcentral.com/bipolar/2011/10/bipolar-disorder-dementia/
Referenced: 10.21.11

The Telegraph
Lithium slows development of Alzheimer’s
By Stephen Adams
http://www.telegraph.co.uk/health/healthnews/8476615/Lithium-slows-development-of-Alzheimers.html
Referenced: 10.21.11

Bipolar Disorder Today
http://www.mental-health-today.com/bp/mcl2.htm
Referenced: 10.21.11

113 Days

2011-10-20T22:16:00.000-07:00

I’m thrilled to report that our son has been on Lithium for 113 days and is still doing fantastic. We haven’t had a second rage after the original that occurred the first week of school back in September. So that’s 113 days with only 1 rage, I never imagined this was possible. Though there’s been a few breakthrough symptoms of sadness, it’s been minimal and easy to manage.

As for side effects, he continues to be doing great. Every once in a while he may feel a little off, but he immediately drinks water and it seems to make him feel better. So now both us and his teacher remind him to drink water throughout the day so that his Lithium blood levels stay consistent.

So what are we seeing?

A normal happy boy. He’s engaged, having fun with friends and exploring his creativity. This week he built a water station in his room. It’s a multi-level system that filters chilled drinking water and a hand washing station. Along with his work, he’s inventing new card games and sketching engineer type drawings of future builds. In addition, he’s loving his after school activity where he’s using his computer skills in a new exciting way and performing well in class.

Just yesterday, I reminded him of our upcoming doctor appointments where we continue to evaluate our son’s kidney condition (birth defect) and his ability to remain on Lithium. He looked at me in a very serious tone and said, “There’s NO way I’m stopping my Lithium, EVER! You’re going to have to fight me to make me stop!”

As you can tell from my son’s statement, he too is well aware of the impact Lithium is having on his life.

Risk-Benefit Evaluation

2011-10-18T23:12:00.000-07:00

As parents, we’re all facing difficult decisions when it comes to our child’s treatment. I don’t claim that one way is better than another, I can only share what works and doesn’t work for us. If you’re a parent that has found success with nutrition, exercise, vitamins or a number of other treatment options, I think that’s fantastic! I really do. I wish that was the case for our son. For us, we turned to medication when other treatment options didn’t work. As I move forward with medication, I try and keep in mind some advice I got from Dr. Singh from Stanford University:

“When it comes to medications, there has to be a risk-benefit evaluation: Live with the symptoms or live with the side effects. What’s worse?”

That’s a question only you and your child can answer.

When Blogging Hurts

2011-10-16T23:50:00.000-07:00

I’m not a recruiter for CABF.

I’m not a psychiatrist or therapist.

I’m not an advocate for pharmaceutical companies.

I’m not brainwashed, unevolved or the source of a serious parenting problem.

I am a mom.

I’m a mom who’s fighting for her son’s life.

I’m a mom who doesn’t have all the answers and often feels ill equipped.

I’m a mom who’s disappointed that the research isn’t farther along.

I’m a mom who’s terrified of possible side effects.

I’m a mom who’s questioning everything our doctor suggests.

I’m a mom who’s frustrated by all the controversy.

I’m a mom who’s offended by all the accusations.

I’m a mom who’s making the best decisions based on the direction of our medical team.

I’m a mom who cries because we’re not doing enough.

I’m a mom who worries because we’re doing too much.

I’m a mom who’s experiencing hope thanks to medication.

I’m a mom who realizes that hope doesn’t always stick around.

I’m a mom who’s watched her son lose touch with reality and is terrified of what could happen next.

I’m a mom who’s scared that her son will end up in prison if he doesn’t have treatment.

I’m a mom who’s sickened by thoughts of finding her son hanging in his room because he stopped treatment.

I’m a mom who’s worried that her son will become addicted to drugs and alcohol in an effort to treat his symptoms on his own.

I’m a mom who’s bled from the hands of her own son.

I’m a mom who’s watched her other children tremble in fear while their brother raged.

I’m a mom who’s seen her 7 year old boy cry while frantically hiding sharp objects from his brother who wanted to kill himself.

I’m a mom who’s seen her son desperately begging for help.

I’m a mom who’s witnessed the devastation of real mental illness.

I’m a mom who hurts, as others throw stones at her for the decisions she’s made.

I’m only a mom... speaking my truth.

* * *

Recently I participated in a discussion on another forum and was hit pretty hard by the words of a few.

I think a reader who visited the conversation put it best when she said:

“...it is kind of like a car accident, you drive by and can’t help looking at it. I tried not to go back to that blog but I did, and it was quite awful what they were saying about you.”

I tried to share my story, but I found that there are people that will always assume the worst of me because I medicate my son. I can’t change that. I’m sharing this with you to show you what moms like me are up against.

Here is the conversation (comment section), but remember, I warned you, it ain’t pretty...

http://1boringoldman.com/index.php/2011/10/12/whats-in-a-name-that-which-we-call-a-rose/#comment-217113

There’s No Conspiracy

2011-10-13T20:35:00.000-07:00

Thanks to a reader, a blog was brought to my attention and I wanted to respond to it here. Not because I wanted to single this writer out, but because I know that many others may have the same concerns. It’s a post by a blogger who has taken a hard look at Dr. Joseph Biederman, a world-renowned Harvard child psychiatrist who according to The New York Times help fuel an explosion in the use of powerful antipsychotic medication in children while not reporting all the money he made from drug makers. As this article states:

Dr. Biederman is one of the most influential researchers in child psychiatry and is widely admired for focusing the field’s attention on its most troubled young patients. Although many of his studies are small and often financed by drug makers, his work helped to fuel a controversial 40-fold increase from 1994 to 2003 in the diagnosis of pediatric bipolar disorder, which is characterized by severe mood swings, and a rapid rise in the use of antipsychotic medicines in children. (GARDINER HARRIS and BENEDICT CAREY, June 8, 2008)

This is definitely disturbing and I’m happy to see that there are watch dogs that are calling attention to misconduct in the field of child psychiatry research, but this blogger is also claiming that the name change for the Child & Adolescent Bipolar Foundation (CABF) to The Balanced Mind Foundation is not to better serve the community, but instead to distance themselves from the stigma that Bieberman has brought to them. He states:

“Families did not want a medical sounding name, which they found to be stigmatizing” doesn’t quite capture the truth. For twelve years, they didn’t have trouble with the Child & Adolescent Bipolar Foundation, but now they’re changing their name. The real stigmatizing name that was their problem was Joseph Biederman [AKA God] who remains on their scientific advisory council. (1 Boring Old Man, October 12, 2011)

You can read the full post here:
http://1boringoldman.com/index.php/2011/10/12/whats-in-a-name-that-which-we-call-a-rose/

* * *

Here is my response:

It seems that there’s a lot being assumed regarding the name change by the Child & Adolescent Bipolar Foundation (CABF).

As a parent, I was looking for support years ago, but couldn’t find anything that matched my son’s symptoms. At the time, I saw CABF, but didn’t participate on this forum because my son didn’t have the diagnosis of Bipolar Disorder. As time went on, my son became more ill, wanting to kill himself, seeing monsters and hearing voices along with rapid cycling. It was finally then that I started to seek support on CABF. Today, this website continues to be a very important resource for my family and I regret not visiting there sooner.

Because the field of pediatric mood disorders is still in its infancy stage and children are hard to diagnosis because of their developing brains, it may be years before our children get an “official correct diagnosis” for their mood disorders. Add to that the possibility of a new diagnosis being added to the DSM, and we’re left with a lot of parents looking for help and no place to land.

So as a user of this website, regardless on whether I like or dislike the new name, I think it’s important that CABF bring support to families like mine at any stage of our journey. Most kids will have several labels throughout their care because as the child’s brain grows, new symptoms appear, leading to a more defined diagnosis or a new diagnosis altogether. This was the case with our own son. Also, if doctors begin to avoid the diagnosis of “bipolar disorder”, even in cases where it seems evident (like our previous Psychiatrist has declared), families will be looking for resources and CABF will not be on their radar because of the name “Bipolar”. By changing the name, more families lost in the mess of pediatric labels can find the support they so desperately need and the support CABF can provide.

Also, it’s no surprise to me that after winning $250,000 in the the Pepsi Refresh Contest, that the foundation would invest in reevaluating their mission and revamping their look, this is what organizations do, it’s not a conspiracy.

By the way, in no way has Risperdal ever been pushed on my child through this website. In fact, we’ve never even tried it because we’ve found success with Lithium. Though I will mention that there are plenty of parents that are thankful for it and other antipsychotics. So the question remains, is Biederman’s research false because he didn’t report all of his income, or is it simply in question because of the conflict of interest? Unfortunately only more research will answer these questions.

The field of child psychiatry is not full of greedy, corrupt doctors. Just like any field, there can be a few bad seeds, but that doesn’t mean that the entire field is corrupt. If you toss out Biederman’s work, it doesn’t make my child’s symptoms disappear. It doesn’t take away the fact that my child needs medication. My child needs medication and is better because of it. Also, Bieberman’s wrong doing is unfortunate, but it doesn’t erase all the good that is being done in the field of pediatric research today. I have faith that organizations like CABF, now called The Balanced Mind Foundation, are here to serve families like mine and that someday, researchers will have the answers and treatments we are all looking for.

* * *

Resources:
The New York Times
Researchers Fail to Reveal Full Drug Pay
By GARDINER HARRIS and BENEDICT CAREY
http://www.nytimes.com/2008/06/08/us/08conflict.html?pagewanted=all
Published: June 8, 2008Consulted: October 13, 2011

1 Boring Old Man (name of the actual blog)
http://1boringoldman.com/index.php/2011/10/12/whats-in-a-name-that-which-we-call-a-rose/

Perfectly Created

2011-10-11T21:54:00.000-07:00

Raising a child with a mood disorder brings many challenges for our entire family. In order to help us cope, we’ve committed to having special alone dates with each of our kids. This time is not only valuable to our 3 boys, but as their parents we’re blessed with the unique opportunity to see our boys in a different light as well as enjoy who they’re becoming without the chaos of the whole family.

Recently I took my 8 year old son out on one of those special dates. As the compliant middle child, he often goes with the flow, like most middle kids, but unfortunately for our son, he has an older brother with a mood disorder and a younger brother with anxiety issues. This leaves him feeling lost, if not trapped inside a lot of abuse, drama and stress. So to help him cope with these challenges, I try to make him feel extra special and give him a safe place to express his feelings.

For our special “Mommy date”, I told my middle son to get dressed up nice because I was taking him out to a fancy restaurant. Unlike my other boys, my middle son has a love for good food and isn’t afraid to try new things. So I took advantage of this opportunity and made a reservation with P.F. Changs. Yes, P.F. Changs is fancy for my family!

As my middle son came downstairs for our “date”, he looked as handsome as can be, all dressed up with his nice jeans on and his hair combed to the side. He even wore his special cross necklace with his baptism date engraved on it. As he stepped out the door with Mom by his side, Dad grabbed his shoulder and warned him , “Now Son, you’re about to take the most precious thing I have out tonight. You take care of my girl and you treat her right, ok?” My son grinned and promised, “Yes Dad, I will.”

Once at the restaurant, my son thoroughly enjoying himself, especially as he mastered his chop sticks. I think it was the first time he had dinner with cloth napkins and candles on the table, to say he was impressed was an understatement!

During dinner, he explained how relaxing it was to be out of the house away from his brothers. When I acknowledged his feelings, letting him know how sorry I was that he had to deal with so much at such a young age, he responded, “Yeah, it’s pretty hard having two brothers with brain problems, but I know someday it’s gonna help me when I grow up to be a pastor of a church because I’ll know what it feels like to go through hard times.”

Wow! I was impressed and overwhelmed with his words of wisdom. Can you believe he’s only 8 years old? But it didn’t stop there. While waiting for our check, my son watched the chefs prepare food in the kitchen. Then he asked out of curiosity, “Can I be a pastor and a chef when I grow up?” I explained that it would be pretty tough since both were full time jobs. With a small head nod, he let out a big sigh and said, “...bummer, because I wanted to feed the homeless.”

Just when I think that we’ve been through too much or that my children are scarred from all the hardships, I’m reminded in a moment like this that my sons are extraordinary individuals who are perfectly created for the life we’ve been blessed with.

* * *

This post will appear as part of the 11th edition of Best of the Best on the S-O-S Research Blog. Check there after the 15th to read more entries by other bloggers who are sharing special moments in raising children with invisible disabilities.

Visit this link after Saturday, Oct. 15th:
http://sos-research-blog.com/10/s-o-s-best-of-the-best-edition-11-family-life/

The Balanced Mind Foundation

2011-10-09T23:31:00.000-07:00

It’s a sign of the times! Child Adolescent Bipolar Foundation (CABF) has changed their name to The Balanced Mind Foundation. According to this link, this change reflects their own research that children experience a number of “working labels” with co-morbid conditions making the word bipolar limiting. So to better serve the community, the organization is broadening their scope. You can read more about it in the link below. If you haven’t check out this site, it’s a must-do for any parent who’s raising a child with mood issues.

http://www.thebalancedmind.org/connect/forums/general-discussion/big-changes-at-cabf-a-message-from-our-executive-director

* * *

I’m curious, does anyone object to this change? I read on the website that some members were disappointed for losing the “bipolar emphasis”. What do you think?

Depression—A Way Out Through Charity

2011-10-06T19:25:00.000-07:00

Today I have a guest post from HelpForDepression.com, please read their important message and help raise money with a click of your mouse for a worthy organization. Happy Friday everyone!

* * *

Depression is one of the most common mental illnesses in the United States, affecting as many as 1 in 10 adults—that could be 1 out of every ten people you know. Research suggests that depression is caused by chemical or hormonal imbalances in the brain, and that it isn’t just “all in your head,” so to speak.

You might well be surprised by that statistic on the high prevalence of depression, but you may be even more surprised to learn that depression is likely significantly under-diagnosed. Many people live with depression for months or even years without seeking treatment, perhaps due to the stigma attached to mental illnesses in the U.S.

Researchers are also starting to study how depression co-occurs with other illnesses or conditions. Up to 40% of people suffering from Post-Traumatic Stress Disorder, for instance, will suffer from depression by 4 months after their traumatic experience. Depression may also occur before, during, or after other common illnesses, such as diabetes, cancer, and heart disease.

There should be no shame in acknowledging an illness like this and seeking treatment. People’s lives may depend on it! Luckily, there are a host of wonderful organizations out there working hard to erase the stigma attached to depression and other mental health issues, and it’s never been easier to help them succeed.

HelpForDepression.com and To Write Love on Her Arms are dedicated to bringing hope to those suffering from depression. October is Depression Awareness Month, and these organizations are working hard to make sure that the message is out:

“Depression is not a weakness, it’s an illness.” And depression can be treated!

To make the biggest change for the most people, Help for Depression and To Write Love on Her Arms (a non-profit organization providing outreach and awareness services) have launched an ambitious fundraiser. You can give them money at no cost to you (what could be easier?) by “liking” HelpForDepression.com on Facebook.

For each of the first 15,000 people who “like” HelpForDepression.com on Facebook by October 15th, $1 will be donated to help people battle depression and find support and healing.

About 35,000 suicides take place every year in the U.S.—most of which are committed by individuals suffering from depression or other mental illnesses. Even worse, there are 11 suicide attempts per every completed suicide. Depression simply can’t be ignored.

So go ahead—make a difference for the mental health of thousands of people across the country, and get everyone you know on Facebook to “like” HelpForDepression.com with you. It’s a free, feel-good way to draw attention to the issue and to lend a helping hand to someone in need.

Together, we can make a difference for those suffering from depression in our communities. “Like” HelpForDepression.com now, and see the movement grow!

Finding His Way

2011-10-04T20:50:00.000-07:00

Today my son came home from school in a great mood because he made a new friend. If you remember my last post, my son admitted to having a 504 plan to another girl who also had one. Well today, this same girl was very friendly, following him around and wanting to visit with my son. Then during recess, she shared that she had an autoimmune disease and this was the reason for her 504 plan. From there, the two formed an instant friendship out of having something unique in common.

What was exciting to see was how much my son enjoyed talking with this girl, he said, “Talking with her about our 504 plans was the best part of my day, it made me feel good, like I wasn’t the only one.”

I smiled at his words and told him how proud I was of him to open up with others. I also let him know that people find that “good feeling” in support groups and I explained that if he ever wanted to try one we could look into it, in the meantime, I think it’s so cool that he’s finding his own way.

Navigating Conversations

2011-10-03T08:57:00.000-07:00

On Friday, my son shared in an excited tone that one of the girls from his class figured out that he had a 504 plan. When I asked how she knew, he said. “I think she figured it out since we both didn’t have to run in the heat. She told me she had a 504 plan and asked if I had one too.”

“Did you tell her you had one?” I asked.

“I told her I did. Then she asked me why.” he said.

So of course I was curious how he responded, asking him, “What did you tell her?”

He said he told her, “Let’s just say... that I can hurt people.”

Then I asked, “How did she respond to that?”

He smiled and said that she didn’t say anything else.

Hmmm... I think we need to work on what he should tell others. I know that he isn’t comfortable telling people he has a mental illness, but going this direction could backfire on him.

It’s another one of those moments when I wish he could just be honest and people would understand.

Kay Redfield Jamison in BP Magazine

2011-09-30T10:10:00.000-07:00

Above: Kay Redfield Jamison responds to the question:

What would you like to say to those suffering from mental illness?

If you haven’t seen the written interview with Dr. Kay Redfield Jamison in BP Magazine blog, you’ll have to check out the link below (this is different than the video above). If you’ve never heard of Dr. Jamison, let me fill you in. She’s an incredible woman fighting for those with bipolar disorder through her impressive work in bipolar research, her instruction in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins University School of Medicine and through her profound books such as An Unquiet Mind, all while having bipolar disorder herself. According to the interview, her honors include being named one of the Best Doctors in the United States and being chosen by Time magazine as a “Hero of Medicine.” To me, she’s superwoman.

What I found encouraging in her article was that she’s been able to manage her illness with Lithium for more than 30 years now. Though she’s the first to tell you that this is not an easy thing to do, being that she made the mistake of stopping her Lithium at one point, she encourages sufferers to stay on their medication. As she points out:

“There is a huge relationship between suicide and being under the age of 30, but that’s exactly the age group that is least likely to be compliant in taking medication,” Jamison points out.

I feel a calling in Jamison’s words. As a mom, I feel that one of my greatest responsibilities is to teach my son to stay on his medication. It’s become a consistent message in our home. We’re lucky that at the age of 10 he desires to take it and believes that it’s essential to his life, but I know those teen years are approaching and if there’s one thing that goes hand-in-hand with puberty, it’s rebellion. So ironically, while many parents are teaching their kids to avoid drugs, we’re teaching our son to avoid drugs, but don’t stop taking the ones you’re on now. Will this be a confusing message in the years to come or will this be a gateway to trying illegal drugs as some suggest? In my gut, I don’t think so. I really believe that our son understands the value of his meds, but regardless, we’ll remain watchful in the years ahead. I figure that if even Dr. Jamison was able to convince herself that she didn’t need her medication, I know that my son too may think the same someday.

* * *

Read the interview here:
Kay Redfield Jamison: A Profile in Courage
http://www.bphope.com/Item.aspx?id=482

My Book review of An Unquiet Mind:
http://mysonhas2brains.blogspot.com/2011/02/unquiet-mind.html

Ah-ha Moments

2011-09-27T21:18:00.000-07:00

Most of my son’s symptoms didn’t become apparent until after he was 7 years old, before that he was an easy going baby and a strong-willed toddler. But every once in a while, I recall a situation that now makes perfect sense. Just yesterday I had one of those memories, it was before he was in preschool, maybe he was 4 years old, but I remember taking him to the book store for storybook time. All the other kids were focused in on the story, anticipating the next page and the cookie reward afterwards, but my little boy was miserable. He couldn’t stand sitting with the group of kids, I spent most of the time chasing him down the book aisles and corralling him back to his spot in the group. It took many trips before I finally realized that neither of us was enjoying this experience.

But today, I can look back on this memory and it all makes perfect sense. Most likely my son hated being in the crowd of kids and was experiencing some sensory overload. It seems so obvious now, but back then I didn’t have a clue.

What about you, do you recall any ah-ha moments when looking back?

Bring on the Compliments!

2011-09-25T23:40:00.000-07:00

Yesterday at church, one of my son’s bible study teachers came up to us after class to compliment our son’s good behavior and made the comment that, “he’s completely different”, then asked, “Is it like getting your old son back?”

What I found interesting about this conversation was that it was coming from someone who only sees our son maybe once a month for 30 minutes due to her rotating schedule. I was surprised to see that she could see the difference in our son after so little exposure. I found it pretty cool to be honest!

Our son continues to thrive on Lithium in many ways. He participated in an extracurricular activity for the first time last week, earning praise from his former school teacher. He brought a new friend home for a playdate and even attended a birthday party where for the first time, he really enjoyed himself and even asked if he could stay longer. We can definitely see his social world expanding!

Moments like these give me hope for his future, but more importantly they give me so much joy today!

The Good, the Bad and the Ugly

2011-09-23T00:22:00.000-07:00

Today we met with our son’s nephrologist (kidney doctor) and we received some good news and some bad news. The good news is that the doctor doesn’t believe the Lithium is causing my son any harm and he’s encouraging us to keep him on it. The bad news is that he believes that both of my son’s kidneys are damaged and as a result, are operating at only 75% of what they should be.

Based on the info he has now, he believes this is possibly a very rare allergic reaction to Trileptal, his other mood stabilizer, or more than likely, he believes it has nothing to do with his medication and instead, his body is showing the long term effect of his kidney reflux that began when he was 6 months old. Initially, we believed that only one of his kidneys were scarred and growing undersized due to his reflux, but after seeing the results today, the doctor confirmed that both kidneys are scared and undersized.

So now we’re waiting on the results of some more tests and based on what the doctor sees, he will determine if we need to get a kidney biopsy. This biopsy will allow him to examine the microscopic filters of his kidneys to determine if his condition is caused by an allergic reaction to Trileptal or his kidney reflux.

So what happens next?

Well if it’s the medication, we can do something about it. But if it’s what he believes it to be, kidney damage from reflux, there’s nothing we can do but watch to see what happens as he grows over the next 5–6 years. The biggest concern is the approaching puberty years. As his body grows, will his kidneys keep up with the growth? If they don’t, his kidney function will continue to drop and then he’s looking at dialyses or a kidney transplant in the future.

So there you have it, the good, the bad and the ugly.

Just another day in my son’s life.

So how’s my son taking all of this? Well he wanted to know if something happened to him when he was a baby to cause all of his problems, he asked, “Did someone drop me or something?” I giggled and said, “no, it’s just how your body was formed in my womb.”

From there he was actually excited to get his blood work done because that meant he could miss out on a little more school. Thankfully, it doesn’t take much to make my little guy happy these days.

* * *

If you can tell from my photo choice above, I’m trying to focus on the positive!

Watching His Kidneys

2011-09-20T21:59:00.000-07:00

We got our son’s blood work back recently and found that the Creatinine test had increased slightly to outside the normal range. According to our lab, creatinine and creatinine clearance tests measure the level of the waste product creatinine in your blood and urine. These tests tell how well your kidneys are working.

Of course I contacted our psychiatrist right away and he reassured me that it wasn’t something to be concerned about since it wasn’t “clinically significant” and that we would run more tests in a few months.

But being the Mama Bear I am, I followed up with our kidney specialist because when my son was a baby he had kidney reflux and as a result, one of his kidneys suffered some scaring and grew slightly smaller than it should have. As a result, his kidneys need careful monitoring to make sure he doesn’t suffer further damage or damage to his body because they aren’t functioning well.

So as a follow up, I contacted his kidney specialist who responded with:

“These tests are minimally concerning but their trend may indicate some future concerns. I think we need to talk.”

On one hand, it’s good news that his current results are not a significant concern, which was really no surprise to me, but on the other hand, there’s this nagging question about future concerns. He’s so young in his treatment and we have so many years, maybe decades ahead where he needs these medications, I’m dreading the thought of facing kidney problems so soon.

I can’t imagine my son having to stop Lithium. The thought of it makes my stomach sick. It would be like taking away the restored vision of a person who was once blind. Now that my son can finally see the world as it really is, how can he go back to where he was before?

I don’t mean to sound so dramatic, but this is the concern I have in my head and in my heart. Until I know different, I will be praying for my boy.

Bipolar Disorder and Love

2011-09-18T23:59:00.000-07:00

I read an article recently and wanted to share it with you, I found it to be encouraging and sad at the same time. It’s an interview with Elizabeth Clayton who’s a professor at Mississippi College in Clinton that chose to expose her bipolar disorder illness. The article shares many deep perspectives from Professor Clayton, as well as those who work closely with her. When reading it, it’s easy to admire her courage in going public and her determination to fight this life long illness. You’ll also notice that she’s a very intelligent, creative and success individual, but what made my stomach turn was her honest reply when asked about her one regret in life:

“That I have never been able to find a companion who would accept me as I am,” she says. “And I had so much to give. So much.”

I seriously wanted to give her a hug, not because I pity her, but because my heart aches for those that suffer with mental illness. I know just like Professor Clayton, my son too wants to love others and be loved. As his mom, I want him to have this and more. I admit it’s not an easy relationship to be in, but it’s still worth it. Loving someone with a mental illness brings pain, but the joys are that much richer. A hug is more warm and a smile is more radiant. This relationship comes with a gift of perspective that you carry throughout your whole life. You learn to cherish what most take for granted and celebrate life’s small moments. Do I wish that my son didn’t have a mental illness, absolutely! Do I regret that he’s my son, absolutely not! I hope the Professor along with my son can find a true love that will love them as they are and in the end, find unexpected blessings along the way.

* * *

Educator shares pain, passion of bipolar disorder:
http://www.clarionledger.com/article/20110911/FEAT/109110320/Educator-shares-pain-passion-bipolar-disorder

References:
www.clarionledger.com
http://www.clarionledger.com/article/20110911/FEAT/109110320/Educator-shares-pain-passion-bipolar-disorder
By Billy Watkins
September 10, 2011
Consulted: September 16, 2011

Asking for Help

2011-09-15T22:49:00.000-07:00

Tonight the boys were outside playing when we told them it was time to head inside for bed. My son became upset, he had plans of wanting to fly a kite instead, so he abruptly took off on his bike. Thankfully, my husband was able to track him down with the car, but once he was back at home, we could tell he wasn’t himself. He seemed to have a little bit of negative energy, even trying to hide in his brothers’ room after they were tucked into bed. During this time, my husband did a great job trying to guide him, offering suggestions on how to get through the moment, while trying to get him to take his evening medicine. It was apparent that we needed to wait until he was ready.

About 30 minutes later he came to me saying, “Mom, I need some help.”

When I asked what was wrong and if he could describe what he was feeling, he explained that he didn’t feel right and couldn’t figure out what was wrong. When I asked if he was still upset about the kite, he said, not at all, he didn’t care about the kite anymore. From there I was able to convince him to take his medication and he used his headphones to distract his brain while he waited for the melatonin to take affect.

I was so relieved to see that sleep finally took over and he could leave this spell of yuck and I was even more proud to see him asking for help when he needed it.

Fighting the Worry Monster

2011-09-13T22:39:00.000-07:00

Recently we brought our youngest to the therapist because we’ve been concerned about his behavior. It’s been a long list of stuff for a while, but we’ve been busy battling bigger issues with our oldest. After our appointment, our therapist concluded that our little one, who is 6 years old, has some anxiety issues. He believes that it’s probably inherited and then agitated by his brother’s disorder. Here’s an example of what we’ve seen:

he’s had night terrors
he tells us that he’s scared a lot
last year he went through a period of regression in areas that were previously mastered
he’s overly sensitive to others and tends to overreact to other kids at school, expecting the worst
he has a lot of stress over change and acts out with anger
he appears on edge a lot
he has nervous habits such as chewing fingernails down to the end
when he was a little younger, he only drew people with scowling faces
recently he went through a phase where he would repeat all of his sentences in a whisper right after he spoke
he has a strong need for order and becomes very upset when things aren’t “just right”
he has extreme anxiety over teeth falling out, shots and getting haircuts
he has meltdowns over things like his shoes getting wet and batteries dying, worries excessively
his anxiety leads to melt downs, defiance or aggressive behavior, usually mimicking his older brother’s behavior (though it’s not a rage—it’s like he’s imitating what he’s seen)

I know that a lot of kids may have similar issues, but it’s the total list and the negative impact it’s having at school and at home that’s made us concerned.

So what’s the therapist’s solution?

“Fighting the worry monster!”

Now if you’re like me, you might be thinking... why would you introduce a monster to a child that’s scared all the time? Well according to our therapist, we need to help our little one externalize his anxieties so he can acquire skills to fight it. He can’t fight it if he thinks it’s a part of him.

So here’s how it works (I know you’re dying to know):

My son tells us he’s scared to go to sleep. We’re suppose to remind him that he’s listening to the worry monster and he needs to fight it to make it go away. We then have him draw a picture of the “worry monster” then once done, he’s suppose to tear it up, stomp on it, completely destroy it and put into the trash. After that, we give him a ton of praise for fighting the “worry monster” and give him a certificate of bravery or words of praise.

So that’s what we’ve been working on. So far our son seems to participate and it seems to help him forget whatever anxiety he had at the moment. Othertimes, he just yells at me, “stop talking about the worry monster!” I think only time will tell if this is going to work.

So, how have you handled your child’s anxiety?

Spontaneous Hugs

2011-09-11T21:46:00.000-07:00

Spontaneous hugs.

They’re rarely seen and disappear as fast as they arrive.

They steal my breath every time.

They remain speechless and travel with a grin,

speaking volumes of the love within.

They push away the past and bring hope for the future,

making me patient for the anticipated cure.

I never expect them,

surprised that they’re from him,

and find myself blessed

with his spontaneous hugs.

– Mama Bear

* * *

I always know when my son is feeling good,

he gives me spontaneous hugs!

Taking Big Steps

2011-09-08T22:33:00.000-07:00

After 2 weeks of school, things are looking pretty good. My son is now doing homework without a fuss (crossing fingers that it continues) and he seems to be enjoying himself at school. What’s even more exciting is that he’s taken some big steps lately.

The first big step involved his blood work. After years of fighting to get blood drawn, we found success with a multi-step ritual that involved EMLA cream to numb his skin, headphones with relaxing music and hand massage to distract him during the actual blood draw and finally Ativan to help relax his mind and anxiety, so we could safely get him to the hospital. I know it sounds like a lot, but it’s taken all of this to make blood work even possible. The unfortunate part of this ritual was the Ativan, because as it wore off, it brought major mood swings that pretty much ruined the rest of our day.

So after our last successful blood draw, my son said he was willing to try his next test without the Ativan. To encourage this next step we threw in a bonus of five bucks for every test completed. I honestly wasn’t nervous, we’ve seen major changes with the Lithium, so I was excited to take this next step.

When the big day came, my son happily skipped the Ativan and walked into the lab with a smile on his face, even joked with me while the needle was in his arm. This may seem trivial to some, but to us, this was a major improvement. In the past, our son left my husband bruised and bleeding after trying to get him to the hospital, even attacking his Dad while driving in the car. So to have our son walk into the hospital on his own and complete the blood test calmly was a miraculous event and so worth the five bucks!

Then yesterday, our son came home with an application for an extracurricular activity in the technology field at school. This was such a big step for him. Over the years, his struggles with social anxiety left him uncomfortable in any group setting. Unfortunately, this has made him avoid any kind of activity in or outside the school. So you can imagine how impressed I was when he brought home the application and was excited to apply. I couldn’t help but smile.

* * *

I’m just so grateful for every positive change in my son’s life. I feel blessed to share them with you because you truly know how meaningful this is to us. Thank you for always being there for me during the bad and good times. You’ve been an essential part of his progress, whether it be through your advice, encouragement or support, I know we are better off because of this amazing online community. Thank you from the bottom of my heart!

In the News: Puberty is Good Threshold for Bipolar Diagnosis

2011-09-06T21:43:00.000-07:00

The above clip is Dr. David Cohen at a press briefing at the annual congress of the European College of Neuropsychopharmacology. During this interview, Dr. Cohen shares his view that puberty is a good threshold for bipolar diagnosis.

“Puberty is a good threshold for talking about bipolar disorder. TDDD is a better diagnosis for pre-pubertal children” because at that stage of life the manic symptoms of bipolar disease, such as irritability, mood change, hyperactivity, and sleep disturbance, can serve as risk markers for the eventual development of bipolar disease, but not at high rates. “Only once a child is at least 11 or 12 years old can you see these symptoms and be confident that it is likely bipolar disease of adolescence or beyond.” Adolescence is when the diagnosis of bipolar disease can truly start. A reliable diagnosis of bipolar disorder in a younger child is really exceptional.” (Zoler, Family Practice News, 9/4/11)

It is interesting to read about the views of the psychiatric field with regards to bipolar disorder. It was only in 1957 when bipolar disorder was officially classified as a diagnosis for adults. Is there any wonder that 54 years later we’re still trying to figure this out? Early onset bipolar disorder has only been acknowledged by some of the psychiatric community for only a handful of years and to this day, remains a divisive topic among psychiatrists. Some doctors think that it doesn’t exist at all in children, Dr. Cohen is an example of one who believes it exists after a certain age, where Dr. Demitri Papolos and Janice Papolos wrote the “The Bipolar Child”, the bible of early onset bipolar disorder.

So what are we suppose to think of all this? Well at times I find it very frustrating, other times I shrug my shoulders and think... call it what you want, my child has a mental illness and he needs treatment. Other times, I have to remind myself that we have to be patient. Just because the psychiatric field doesn’t know how to diagnosis it in children, doesn’t mean that it doesn’t exist in childhood. I’m sure that diabetes existed long before they knew what it was and all the forms it presented itself in. The way I see it, they still have to understand this illness in its early form. It’s like an easter egg hunt, I know the egg is there and all these doctors are searching for it, someday they’ll figure it out and realize that the answer was right in front of them. Hopefully this will happen during our lifetime.

* * *

Read more about this with additional info at:
New DSM-5 Category May Curb Youth Bipolar Overdiagnosis

References:Family Practice News,
Mitchel L. Zoler
http://www.familypracticenews.com/news/more-top-news/single-view/new-dsm-5-category-may-curb-youth-bipolar-overdiagnosis/48692e2e07.html
Published: 9/4/11
Consulted: 9/6/11

Video Clip Provided by:
Uploaded by ElsGlobalMedicalNews on Sep 4, 2011

http://en.wikipedia.org/wiki/Bipolar_disorder

Suicide Prevention Week

2011-09-04T23:35:00.000-07:00

This week is National Suicide Prevention Week. I just wanted to take a moment to bring awareness by sharing some links from the suicide.org website. If you yourself are considering suicide, please call 911 (US only) or the 24 hour suicide hotline 1-800-SUICIDE. If you just need somebody to talk to, call 1-800-SUICIDE or 1-800-273-TALK. Suicide is preventable and if you’re feeling suicidal, you must get help immediately!

For more awareness, check out these links:

Suicide Warning Signs

Suicide Causes

Bipolar Disorder and Suicide

Suicide Myths

What To Do If Someone Tells You They Are Suicidal

There are many more links that you can find at this website. Check it out and spread the word. In the US, 1 person every 15 minutes dies from suicide. I can share from my own experience that even children can have suicidal thoughts before they know what suicide is. My son has expressed wanting to die since he was 7 years old. This was caused by a chemical imbalance in his brain making him feel depressed and “worthless”. Feeling suicidal is not a weakness that you should hide from others, instead it’s usually a symptom caused by an illness, like depression, that can be treated. Experts believe that most suicidal individuals don’t want to die, they just want to end the pain they’re experiencing. With the right treatment, life will look completely different and the pain can end in a different way. You are loved and you are worth it.

* * *

1-800-SUICIDE (1-800-784-2433)

1-800-273-TALK (1-800-273-8255)

suicide.org

* * *

In case you’re wondering why I chose the stock image above, it’s because the rainbow reminded me of God’s promises.

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. —Jeremiah 29:11

It’s Been One of Those Days...

2011-09-01T23:18:00.000-07:00

I’m light on words tonight because I’m completely exhausted. After a day that included blood work for my oldest, therapy for my youngest, an ortho appointment, a broken dishwasher, computer problems, childcare for a friend, fitness class instruction with a fake smile and back-to-school night, I have these lovely moments to reflect on (sarcastic tone).

* * *

Laughing was all I could do as I watched my youngest run from the therapist’s office and out into the parking lot (twice) while screaming because he wanted to go back to school. Yes, I had a curious audience watching as the drama took place. If I didn’t laugh I would’ve cried. All I could think of was... really, we’re going to have this much fun together for the next 18 years? I finally had to resort to holding him kicking and screaming while we waited to be called into the therapist’s office only to find out that he doesn’t have OCD, but anxiety issues.

Follow that with an afternoon of my oldest going into a rage after a week of back-to-school stress that included me holding him for 50 minutes while he hit, bit, scratched and kicked me. Thanks to advil and a sense of humor, I’m trying hard to stay positive while convincing myself that someday... this will be really funny.

It’s been one of those days...

Fall Girl and My Girl Marybeth!

2011-08-30T22:13:00.000-07:00

Marybeth Smith

Over the summer I got to enjoy a few books, one of them being the book Fall Girl by my friend Marybeth from Meet Marybeth Post last year. If you haven’t heard of her before, let me introduce you. She’s a fantastic wife and mother of three who’s raising a son who has bipolar disorder. What intrigued me about her, besides her hilarious wit, was that she too lives with bipolar disorder. So from the beginning of our friendship she’s been a valuable resource for me in finding answers to symptoms that I didn’t understand. Since then, she continues to serve other families through a valuable website she created called Ask A Bipolar. Over the year, the site has expanded to include a handful of authors, who like Marybeth, have wisdom and experience they can share with others. If you haven’t checked it out yet, do it today!

The other thing that intrigued me about Marybeth was that she’s an author. So when I had the opportunity to read her first published book about a teen growing up with a brother who has bipolar disorder, I jumped on it! I have to say, even though I wasn’t her target audience, I had a lot of fun reading it and look forward to her next book.

As a special treat, Marybeth has agreed to do an interview with me about her new book, which by the way, when released was listed as the #3 top selling book on Kindle’s 100 list under children’s ebooks. Way to go Marybeth, I’m so proud of you!

* * *

Thank you Marybeth for joining us today, for those who are new to my blog, can you share a little about yourself?
I am a perpetual perfectionist living out my daily life as an imperfect, bipolar mother of three little ones, my middle child also having bipolar disorder. In 2010, after coming across a post on Mama Bear’s website here, I was struck with an idea, so I put the idea in motion and founded the website www.askabipolar.com, where me and a group of authors suffering from bipolar disorder answer reader’s questions about mental illnesses. In my spare time I write, blog and design websites. Fall Girl is my first published novel, and I hope that one day, through this book and my website; I will be able to help bring an end to the stigma surrounding mental illness.

Can you share a little about your book?

I wrote my book about a girl who’s brother and mother both suffer from bipolar disorder. I wanted to show the effects bipolar has on the family as a whole.

What made you want to write for a teen audience?

I am a perpetual teenager in my own mind. I read young adult, I write young adult and I hate to admit it, but on occasions I think and talk like one too. But that’s totally rare!

How did you get into the mind of a teenager to write this book?

I read old journals, LOTS of young adult fiction, and blogs written by teenagers. I suppose you could say I did my research.

Having bipolar disorder yourself, what made you decide to write a book about a sibling with bipolar disorder?

Well, I actually got the idea after my son was diagnosed. I was sitting there wondering what effect his illness would have on my other two children. And just like that, the idea was born.

How did you research the sibling perspective?

I observed my children. Many of the situations in the story were loosely based around things which have actually happened. I also read support forums for siblings and family member dealing with someone with bipolar.

Were there any challenges you faced in writing this book?

There were many scenes outside of my comfort zone so I was constantly asking people, “Do you think this will offend people?” I’m not one to really use profanity, but I wanted to be true to my characters. And the kissing scenes... I’m so not good at writing kissing scenes!

What did you learn about yourself in writing a book from the sibling perspective?

I kinda somewhat felt guilty for having put my siblings through so much of the same stuff. I now have a much greater respect for them.

Did you gain a new perspective regarding your own sibling relationships?

I’m lucky enough to have very close sibling relationships as it is. But the one thing that did totally shock me was my sister’s reaction to the book. She said it was like she was hanging out with my brother back when they were teens. I never even considered what it must have been like for her hanging out with him so much, which was probably the most shocking part of all!

What was the greatest challenge in writing and publishing your first book?

Fall Girl was actually the third novel I finished, but the first one I published. Writing it was easy. The story pretty much wrote itself. It was what came after that was difficult. I originally started querying agents. The response wasn’t horrible, but I just didn’t seem to be getting anywhere. On my previous novels I just up and moved on to the next book, but this novel... this one was too important to me. I NEEDED to get it out there. So I made the choice to self publish. It has definitely been a learning experience. I made MANY embarrassing mistakes, but in the future I think it’ll be much easier. But the greatest challenge so far is trying to find a way to get it into actual stores and libraries. It’s my current project.

What was the most rewarding experience?

Some of the responses I received. Especially the ones from teens who have thanked me for writing about this topic in such a realistic manner.

So, are you going to write a sequel?

I have to be honest and admit that I had never really considered a sequel. However, it has been made very clear to me that I MUST write one... SO yes, I’m in the process of plotting it out. There are some new characters, some old characters and a whole crap ton of drama. So much so that even I’m having a hard time wrapping my head around it! Let’s just say that Annabelle will never be the same after everything that happens!

* * *

Find Fall Girl (Kindle Edition) on Amazon for only $0.99:

http://www.amazon.com/Fall-Girl-ebook/dp/B0056U9SSE/

Paperback version:

http://www.amazon.com/Fall-Girl-1-Marybeth-Smith/dp/1463579519/ref=tmm_pap_title_0

57 Days—A New Record!

2011-08-28T23:12:00.000-07:00

Today is the boys’ first day of school—I’m jumping for joy! After the cancellation of school last week, due to the evacuations in our area, we had 1 bad day where my son was impulsive and irritable, demonstrating “on the prowl behavior”, then the day finished with some depression and trouble falling to sleep. Though the day was challenging and stressful, it was no where near the severity we’ve seen in the past. I felt like we were on the edge of a rage, but it never happened! This is huge!

Then I counted the days. It’s been 57 days of sweet, amazing stability! This is an all time record. Seriously, prior to Lithium, the longest we’ve gone was 29 days back in April of 2010. But what’s even better is the fact that the breakthrough symptoms were not as bad as they were in the past. By the next day, my son was already commenting on the fact that he was feeling so much better and was back to his normal self.

Being that our psychiatrist told us that breakthrough symptoms are considered normal and recognized as being part of a successful treatment plan. I didn’t worry about the episode, instead I focused on teaching my son that there will be days where the symptoms come back and that he should focus on coping while he waited for the good feelings to return. Thankfully, that’s exactly what happened.

Aftershocks

2011-08-25T23:50:00.000-07:00

I’ve had a good cry on and off the last two days. With my boys still home from school due to the evacuations in our area, I tried to give them a fun day out. Things didn’t go as planned. But it isn’t what you may be thinking, my oldest wasn’t the challenge, it was my youngest.

I’ve been holding this concern for sometime now, but haven’t had the heart to write about it yet. I’ve been concerned that my youngest is developing some issues. About a year or two ago I took him to our therapist when he started to show some anxiety. He started to regress with his toilet skills and had problems sleeping alone. He was scared a lot of the time. It seemed like a no-brainer since my oldest was going through a period of violent rages. To say the least, they were very scary, so it seemed obvious that my youngest would have a hard time processing what was happening and according to our therapist, was most likely developing post traumatic stress disorder (PTSD).

I understand that some readers may be thinking... “that’s ridiculous”, but you have to keep in mind that his exposure to unpredictable violence started when he was around 2 years old. Over the past 4 years, I specifically remember many occasions where my small child was terrified by his brother. There were times when our oldest would go into a rage and my youngest cried while covering his eyes with his little hands, trying to block out all that was happening around him. Other times, he would witness me being attacked as I yelled at him to go hide in his room. There were the nights where he would hear a rage for hours on the other side of his bedroom wall, flinching in fear at the sounds of destruction and the pounding that rattled his own walls. He’s been a victim of his brother’s impulsive behavior and now is conditioned to run whenever big brother appears upset.

So is it any wonder that he’d develop some fear and anxiety? I think most families living under these conditions would have some form of PTSD. Even today, I feel my pulse quicken when my son raises his voice, even if he isn’t getting out of control, my body seems to overreact.

But were starting to see more than just anxiety and fear in my youngest. At 6 years old, he recently went through a phase where he would repeat any sentence he said in a whisper right after. (Exactly like the boy in the tv series The Middle). It goes something like this:

Little Brother says: “I’m going outside to play.” then whispers, “I’m going outside to play.”

We’ve also had issues at school where he overreacts to other kids, gets angry over change and he appears on edge and screams a lot at the small stuff. He also experienced night terrors when younger and has had sensory issues for as long as I can remember.

But this past week, I’ve seen for the first time him having tantrums beyond normal behavior. It was like his brain gets stuck on something and he’s overcome and goes into meltdown mode. It’s not the same as a rage, it’s very different. He’s never malicious to others or exhibits predatory behavior like his older brother, it’s more like a child that has to have things a certain way to feel secure. For example, last night while tucking him into bed, he had a meltdown and couldn’t go to sleep because his fitted sheet wasn’t fitting his bed perfectly. To my observation it looked fine, but something was wrong with it and he couldn’t sleep because of it. This same scenario can revolve around his shoes, the carpet square he sits on in class or the foods he eats.

So today I made the decision to call our therapist. His response was, “It sounds like he’s developing the anxiety disorder OCD, lets schedule him an appointment.”

A part of me feels relief because I’ve been at a loss on how to help little brother and I look forward to getting some guidance. But my stomach twists as I write to you now because I feel sad and guilty as a mother. Could I’ve done a better job of making little brother feel more secure while handling big brother’s rages? Did all those hours of holding big brother during a rage or trying to keep him in a timeout leave little brother neglected emotionally? Was this unavoidable due to our family’s genetics? Or is this an aftershock of bipolar disorder in our home?

Either way, we’re moving forward to help this little guy and thanks to older brother’s recent stability, we can.

First Day of School Cancelled!

2011-08-23T22:28:00.000-07:00

Well, we were all ready for school with backpacks filled, lunch boxes set out and clothes selected for the big day. And did I mention I was day dreaming about my long awaited free time after the boys were in school? Well it was all for nothing because our district had to close down our school due to evacuations in the area. Big bummer!

I have to admit, I was feeling pretty low with this announcement, that meant no “me” time after our long summer together. But what surprised me was my boys’ reaction, they were devastated, even crying over this news. It’s hard to believe, huh!

But I have to admit, it was refreshing to see my oldest so excited for school. Last year he was pretty depressed and would’ve paid good money to not go to class, but seeing him so thrilled to get back to school to see all his friends brought me so much joy. Having to tell him it was cancelled was another thing, kinda like canceling Christmas morning.

So tomorrow, summer is another day longer and we’re going to make it something special, anything to cheer these boys back up and for me to enjoy our time together. Though I will admit, I may be day dreaming a little about the first day of school on Thursday.

To IEP or Not... That is the Question

2011-08-22T01:38:00.000-07:00

Tonight I just finished writing my son’s 504 plan for our meeting tomorrow. Basically, the principal meets with me and the teacher to go over any accommodations we’re requesting to help my son succeed in the school year ahead. Because we’re fortunate that he’s still performing well academically and the school is meeting all of our needs, we haven’t created an IEP yet.

But I still wonder.

Should I have an IEP in place before he starts middle school a year from now? I had this discussion with my therapist and he mentioned that it was possible we wouldn’t qualify for an IEP because my son was getting good grades. What are your thoughts and experience in this area, I would love to know!

* * *

A link to a resource I used from CABF for educating my son’s teacher about his disorder:
http://www.bpkids.org/sites/default/files/edbrochure.pdf

A Tale of Two Boys—A Must Read!

2011-08-20T22:01:00.000-07:00

I came across this essay written by “Anon in the Midwest” through CABF. It is her story, yet I believe one that most of us can relate to. It is from the heart, raw and intense, yet clarifies the complicated life we live. Reading it made me ache and made me want to fight for our families. If you haven’t checked it out yet, go there now and read it for yourself!

A Tale of Two Boys
(This story is found under the headline: A Son’s Demons)

Bipolar 1 Disorder

2011-08-18T22:00:00.000-07:00

Last week we met with our psychiatrist and I shared with him our recent concern about my son’s silly behavior in the store and how it scared him. At the time, our doctor in his typical fashion, didn’t have much to say other than, “I don’t really know what’s going on,” then quickly went to his computer to organize our prescriptions.

Being the pesky mother bear I am, I emailed him asking for more clarification. I started with the following question:

“Does our son’s amazing response to Lithium, combined with his known symptoms, indicate what type of mood disorder he has?”

Then I asked,

“Could his scary, uncontrollable, silly behavior in the store be a short episode hypomania?”

I was surprised to see that for the first time within our HMO, our psychiatrist had an opinion. He said that our son’s depression, episodes of increased energy and elated mood, episodic psychotic symptoms in a child who does not appear schizophrenic and family history suggest that much of his difficulty has been a manifestation of real bipolar 1 disorder.

He also mentioned that a person’s response to medication, including Lithium, does not prove or disprove a diagnosis. But he found our son’s response to Lithium to be very encouraging. Then followed up with, “too little is understood about real bipolar disorder in prepubertal children.”

So there you have it.

An official opinion.

This is not a diagnosis, but rather as our therapist calls it, “A working diagnosis.”

I believe this is the case because as our doctor mentioned, too little in known about children and real bipolar disorder. Don’t you find it funny that he used the word “real”.

So, you may wonder... how does this make me feel now that we have an official opinion?

First, it makes me very sad. This is not what I wish for my son and I still hope that he’s one of those kids who will overcome many of these childhood symptoms and only struggle with depression as an adult.

It makes me scared because I know how serious this road can be. I’m also aware that research shows that for those who develop bipolar disorder as a child, the disorder tends to be more severe as an adult. I know what challenges may lay ahead and it scares the crap out of me.

Then there’s the part of me that has known this all along, that has felt this was a possibility. I feel for the first time that the doctors may be recognizing what I’ve seen all along. After years of sharing all that I could, I feel like they’ve finally heard me and that they believe us and take us seriously.

Finally, hearing this opinion has given me hope that maybe we can give him the best outcome possible by treating the symptoms while he’s young, teaching him the importance of staying on his medication and giving him coping skills along the way. I’m also keeping in mind a piece of advice from Dr. Manpreet Singh from Stanford’s Pediatric Mood Disorders Clinic, “When it comes to symptoms in children, we can’t guarantee what’ll happen, we need to wait, watch and wonder. Don’t let your anxiety define your child’s outcome.”

In the end, my grief and fears are too much to think about, so for the moment, I’m holding on tight to the hope.

Camping Trip

2011-08-16T22:22:00.000-07:00

I just got home from an amazing camping trip with my boys. This is the second trip we’ve ever taken the kids on, the first one resulted in our toddler wandering off into the woods within minutes of arriving while unpacking the car. The panic alone almost put me into labor with our third boy. After that trip, we decided camping wasn’t for us until the kids were older.

Now, with our oldest still doing great on Lithium, we decided to join our family on a special trip with their Grandparents and Aunt and Uncle. I’m so glad we did it.

My Dad is amazing with them, as the boys refer to him as their “Adventurous Grandpa”. He took them on nature walks through the woods, he taught them how to pan for gold and even brought out his metal detector to search for buried treasure! Their Aunt and Uncle taught them how to row a canoe, how to work a paddle boat and how to affectively splash their brother. Thanks to them, I was able to relax a little and read a book!

For me, the most amazing thing was when all three boys put on their life jackets and swam across the entire lake! Yes, it was a small lake, but for 3 young boys, who have never been in water over their heads, this was a huge achievement.

To see my son trying new things, enduring stressful situations all while being out of his element was a significant test that the Lithium is still working. While there were some minor moments, he demonstrated outstanding ability in overcoming his stress and was really able to enjoy being a 10 year old boy!

* * *

Thank you to my family for being so supportive and making this trip spectacular!

Photo Source:
I took this photo of the lake while on our nature walk.

iCarly Makes a Joke out of Mental Illness

2011-08-12T22:12:00.000-07:00

This week, Susan Resko of CABF blogged about the new episode of iCarly airing this Saturday night on Nickelodeon. If you haven’t seen iCarly, it’s a tv show aimed at young, preteen kids. This particular episode stigmatizes adolescent psychiatric hospitalization. In an effort to stop this kind of negative message reaching our next generation, Susan has encouraged us to write to Viacom to ask that they pull this episode. Here’s the letter I’ve sent to both Viacom and also the producer of iCarly. If you too want to voice your opinion, check out the links below, as well as a link to Susan’s blog. Even if the episode has aired, it’s still worth it to voice your opinion because if you’re familiar with children’s programming, you’ll know that they love to air reruns, over and over and OVER again!

Here’s my letter:

I’m writing to you about an upcoming episode of iCarly called “I Lost My Mind”. It’s the episode in which Sam checks herself into a mental hospital for kissing a boy she doesn’t like and the other kids try and break her free from it.

I have 3 young boys who watch this show. As a family, we have always enjoyed it. My oldest, at 10 years old, has a mental illness. He has had psychotic episodes where he sees monsters and depressive episodes where he wants to kill himself. The likelihood of my son being admitted into a mental hospital is extremely high in the coming years ahead.

This upcoming episode of iCarly will have a negative affect on my son and all children who live with mental illness. First by mocking the institution which may one day save his life, next by making a joke out of my son’s mental illness and finally for exposing him to society’s negative view of mental illness. If he relates a mental hospital to something that is to be made fun of, that comes with a negative stigma that even iCarly pokes fun at, he will be more resistant to the vital care he may need someday to save his life. As parents, we are trying our best to teach him while he’s young that he has value and that his illness does not make him a bad person, but your programming tears apart all we are working towards.

You may think... “Well don’t have your son watch iCarly”. I wish it was that simple. Many of his classmates watch this show. So even if my son doesn’t see the episode, his peers will and this will continue the negative stigma that he already fights against everyday.

Please reconsider airing this episode and be sensitive to the children that suffer everyday with mental illness. Our kids need love and support, not mockery.

—Mama Bear

* * *

Susan’s Blog Post about iCarly:

http://www.bpkids.org/connect/blog/2011/08/nickelodeons-icarly-stigmatizes-mental-illness

Contact Viacom:

http://www.viacom.com/contact/Pages/default.aspx

Contact the Producer of iCarly:

http://danwarp.blogspot.com/2009/01/to-contact-dan-schneider.html#idc-container

Could this be Hypomania?

2011-08-12T00:23:00.000-07:00

Ever since my son has been on Lithium we haven’t had any rages or depression, thank goodness and overall he’s doing amazing. The only unusual experience was the previous “I need to clean” impulse that I blogged about recently and then last week, we had a new episode that has left me guessing.

It all started one evening when I took my son to the store to buy some organizational tools for the game he was inventing. All day he was being very creative and spent hours designing a new dice game with a rule book and characters. I have to say, it was pretty darn clever.

When we arrived at the store, I could tell he was in a great mood and was very excited to purchase these needed tools. But as the shopping continued, he became very silly. During this time I just blew it off, thinking... “boy he’s having a great time”. As the minutes passed, his mood became more elated and out of the ordinary and he started repeating his made-up word, “Kerplupidunkin”. I just laughed it off and focused on the next item on our list, but as time went on he continued relentlessly, saying the word over and over again. Every once and a while, he said with a smile on his face that he didn’t know why he was saying this word but he couldn’t stop. Because his comments came with a silly smile and goofy attitude, I didn’t think much of it. But at a certain point, I started to sense some stress in it all, maybe because it started to make me feel uncomfortable in my own skin.

Once we got to the car, my son made the comment, “Boy, I feel much better now”, I responded with, “Yeah, you sure seemed to be having a silly time.”

Then I heard it... the soft murmur of tears falling as he said, “I really tried to stop acting that way, but I couldn’t. It scared me.”

I was caught off guard with this, rushing to give him a big hug as I reassured him. I had no idea that he was uncomfortable and that he was struggling in any way. While in the store, he was smiling the whole time, maybe a little annoying with his repetitive word, but it looked like he was having fun and just being a silly boy. Had I known that he was scared by it all I would have responded differently in the store, but I didn’t recognize this as anything to worry about, until I heard the words, “It scared me.”

So is this a breakthrough of hypomania? Could this be the same thing as the episode of impulsive cleaning? Is that why he was so creative all day? This is all so new to me. I’ve experienced the rages, the depression, the anxiety, the rapid cycling and scary thoughts, but seeing him suffer when he’s “too happy” is scary because I know that deep down, this could be a symptom of bipolar disorder.

Bipolar Mood Monitor App!

2011-08-09T21:59:00.000-07:00

I just found this Apple mobile app that allows bipolar patients to easily track and chart their moods everyday using simple tools right on their iPhone or iPod Touch. It also includes comment and alert functions and one-step email so charts can be sent to specific addresses, like your doctor. Users can make entries in a matter of seconds and review details at any time.

Here’s an example of one chart available.

You can read more about it in the Scoop Health article listed below or find it for yourself in the iTunes App store for $4.99. I just discovered it, so I haven’t tried it out yet, but I took a peek at the graphics and thought they looked pretty cool and easy to use. Let me know if you’ve tried it and if it’s something you’d recommend!

Scoop Health Article:
http://www.scoop.co.nz/stories/GE1108/S00029/new-mobile-app-helps-manage-bipolar-disorder.htm

A Perfect Day

2011-08-07T23:44:00.000-07:00

Today we took the boys on a day trip to the ocean.

There were no rages,

no sadness,

no anger,

no irritability,

no impulsivity,

no agitation,

no sensory issues,

no stress,

no problems what so ever,

it was a perfect family day.

Oh and the ocean was pretty cool too!

(smiling ear to ear!)

* * *

Photo Source:

Me and my nifty camera!