Saturday, October 30, 2010

Hooray for Haunted Houses

Last night, my son asked if he could go to the neighborhood haunted house. They had two versions, one for the little kids and a scary version for the big kids.

My son wanted to go to the scary version. This shocked us all since he hates crowds and loud noises, let alone unexpected things.

At first when we showed up, he decided it was too loud to go, but wanted to try again after dinner. So after an hour we headed back and to our pleasant surprise he did it! He had to wait in line for 30 minutes, but actually made a friend with a very chatty girl around his age. Afterwards, he came out with a smile ear to ear and said it wasn’t too scary and he had a lot of fun. Did you catch that, he had A LOT of FUN!!!

He later shared that his favorite part was talking to the girl in line, isn’t that sweet! I think it was a successful night in trying new things, making new friends and going outside his comfort zone.

On the flip side (isn’t there always a flip side), my youngest has developed a big fear of all things halloween, so much so, that I can’t even take him into a Target until the halloween decorations are down, so the little one and I sat in the car while we waiting for the fun adventure to be over.

Happy Halloween Everyone!

Friday, October 29, 2010

The Lion Inside

Making friends is hard sometimes.

For everyone.

But for my son, it’s much harder.

This week, my son’s been having a hard time at school. He’s being teased by other kids. Girls are sticking their tongues out at him and boys are hitting him and making fun of him behind his back. They think he’s weak, even calling him that to his face. They see him as being easy to walk all over. What they don’t realize is that there is a lion inside. And my son is doing everything he can to keep it under control.

My son said, “I work really hard to keep my anger inside, so when they say bad words I don’t fight back because I’m afraid that my anger will come out. The problem is, they’re taking advantage of me because of this”.

I believe my son is right. He knows what lies inside of him. Only those that live with him have seen this lion that has powerful strength and great might. The kids at school have no idea who they’re messing with. I admire my son’s deep desire to keep it together at school, that he recognizes that if he loses it, he’ll cause great harm to himself and others and he never wants that to happen.

But the downside of all this restraint is that he’s being targeted by kids that bully. He’s not fitting in. He even recognized that our own neighbor’s kid was being mean to him at school, just to be “cool”.

So what are we as parents to do? If we tell him to stand up for himself and fight back, his anger may get a foothold and take over, bringing a suspension or expulsion. But we can’t continue to let kids abuse him.

Because he’s still young, I’ve decided to be very involved in helping him in these situations. I’ve talked to other parents to ask them to keep their kids away from my son and I’ve discussed the bullying with our principal. I know I look like the annoying, over-protective mom, but I want my son to know that if he ever has a problem, he can come to me and if I can help, I will. I hope that as he gets bigger and struggles with peer issues in the future, he’ll know that I’ve always got his back.

Lets be honest here. We’ve all read the stories of what happens to some kids who face relentless bulling. Knowing that my son already struggles with depression, I know that there’s a dangerous combination brewing here. I need to protect my son in every way.

I just don’t always know how to do that.

How do I encourage my son to stand up for himself, when he himself knows that the line between control and losing it is so thin? How do I help my son navigate through peer relationships when things can go so very wrong?

Last night, my son asked if we could pray for the other kids to stop being mean to him. This breaks my heart. I wish I could fix this. I know that as my son grows, he’ll face many more peer challenges, but unlike his toddler years where a hug would fix anything, there’s little I can do to help.

Wednesday, October 27, 2010

Another Increase in Trileptal

Yesterday, we increased his Trileptal dose again. He remains below the recommended dose with his weight, but because he’s so sensitive to the medication we have to take it slow. We decided to increase it because he was starting to cry for no reason or as he says, “have trouble controlling my anger”. He was showing a pattern of struggling around 3 pm everyday, so this was a good indicator that his morning dose was running out before his afternoon dose. Thankfully, all those mood charts are helping us make these important decisions.

I’ve been impressed with the recent maturity we’ve seen in our son during this time. To hear him say, “my moods have been changing all day. First I’m angry, then I’m sad and then I’m happy. It happens like this all day long”. I love his new ability to express exactly what he’s feeling, it just makes everything so much easier, I also tend to think he’s less likely fight us when he can express what’s going on inside.

Another thing we’ve noticed is his new ability to search for ways to cope with his moods. This past week he was having a breakdown at school since he was stressed about having to do homework. At one point, he dropped to the ground crying and saying that he just needed to go to a peaceful place like the ocean. He then asked through tears if he could go out into the field we were parked next to and do his homework alone in a peaceful place. I said, YES! So off he went into the field and hid behind some trees in the distance and working for about 30 minutes until his homework was done. Once done, he came back to us in a much better mood.

Last night he ran to me saying he was having trouble controlling his anger and needed help. This happened before he took his anger out on anyone, it was a wonderful moment.

He’s becoming more of a participant in his own wellness and this gives me a lot of hope for his future.

Friday, October 22, 2010

My 100th Post

Today is my 100th post. I can’t believe that I even had that much to write about over the past 9 months. This blog all started after a very devastating night. I felt all alone and my brain was drowning in thoughts. Not knowing what to do with the pain, I sat at my computer and began typing to you. Since I’m not a writer, I was actually surprised how quickly the words poured out, it was therapy at it’s best. When I was all done I sat back with a feeling of peace and a quiet mind.

At first it was just an exercise in coping. I wasn’t even sure if I was going to post it on the internet. But then I remembered how difficult it was to find information that I could relate to when I was first looking into my sons’s illness. So I decided then to change that, hoping that there would be some other mom out there that could find comfort in my words, knowing that they were not alone.

Since then, I’ve become aware of the amazing community that is available to families like ours. From the Bipolar Kids website to the MDJunction support groups and all the amazing blogs that I was happy to find. Through them all, I’ve found tremendous support and education. And on some days, a place for a good cry.

What has encouraged me the most, has been your comments and emails through this blog. I can’t tell you how much they have meant to me. Hearing your own stories or just the words “this is just like my life” has given me so much support. I’m actually surprised that people have found this blog. At first, I didn’t even think people were even reading it until I got a counter and saw the numbers. It blew me away to see that there were so many families just like ours. To know that we aren’t the only ones gives me strength, if you can get through this, so can we!

So, on my 100th post I wanted to say thank you. Thank you for reading and thank you for sharing, you have helped to heal my broken heart and have given me hope for my son and his future.

To all my cyber friends who’ve reached out, thank you for making me laugh through tears (yeah, that’s you Marybeth) and for checking in with my family and showing you care. It’s like a hug everytime.

I also want to thank my amazing husband who has supported me in finding my own way to cope. I love you to the ends of the earth and as much as this journey has been difficult, I feel blessed to be traveling it with you.

Wednesday, October 20, 2010

Sibling Support

The other night my middle child asked me a serious question. He wanted to know if he was the only kid to have a brother with a mood disorder. He explained that it was very hard and he felt like he was the only kid in the world like this.

This was a wonderful question and also an eye opening one too. I was surprised to find that my 7 year old had these type of thoughts. I knew that things were hard for him and he wished his brother never had this disorder, but I never thought about how he saw himself fitting into the world.

His question is one I understand very much. For me, seeking support started with finding other moms just like me, so I could find comfort in knowing that I wasn’t alone. So, I guess I shouldn’t be surprised that he would have these feelings too.

With a hug and heart-to-heart talk, I was able to reassure him that he wasn’t alone, sharing that there were many other families just like ours. I also told him that if he was ever interested, I would seek out a support group with kids just like him, so he could talk with them about his experience. He thought that was pretty cool and decided maybe he would someday when he was older, but for now, he was already feeling better after talking with me.

This moment was a good reminder that everyone in our family may need support, but since I haven’t crossed this bridge yet, it got me thinking about what many of you do to help your other children. Please share with us, for when the time is right, I want to be able to do everything I can.

Monday, October 18, 2010

His Own Perspective

This weekend I had some very insightful conversations with my son. Thankfully, as he gets older, he’s better able to explain what he’s experiencing and feeling.

There’s one conversation I wanted to share with you (with his permission) that maybe will help you understand what your own child may be feeling.

He shared with me how scared he feels when he goes into a rage. He explained that in his normal state he wouldn’t be strong enough to punch a hole in the wall, but he recognized that in a rage, he could, because he gets super strong. It’s that super strength that scares him. He shared that sometimes he goes into a rage and after it’s all over, he looks around at all the damaged he’s caused and feels frightened by it.

In this fright he runs to his bed and curls up. As my son continued to speak, his eyes teared up, he explained that he becomes overwhelmed with the feeling that someone is going to come into his room and kill him.

Yikes! This is certainly a reason to despise timeouts. On several occasions, I’ve heard his mood shift during a timeout in his room from violent anger to intense anxiety, screaming that he’s scared in his room, that he’s afraid that someone is going to get him. I only wish I had another option for keeping us all safe in a rage. But this explanation helps make sense of his reaction to timeouts.

Another reason for sharing this with you is to help my son. He wanted to know if anyone has experienced this. If you have or your child has, let me know and I’ll share your response with him.

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By the way, my son does not participate on this blog. He just knows that his mom is sharing our life anonymously with other parents on the internet, in order to help him and our family.

Saturday, October 16, 2010

The Standoff

Tonight, we’re licking our emotional wounds after another rough day. Things started to fall apart 2 days ago when my son and I had a 45 minute standoff in the parking lot at school when trying to take him and 4 other kids home.

It all started when he saw me on campus and happily shared that he only had a math sheet for homework. When I gently reminded him that he also had his 20 minutes of reading, his internal switch was pulled.

I immediately sensed a change take over him. So much so, I actually kept a few feet of distance from him and myself because I sensed he could strike at me, at anytime.

As we approached the car I quietly warned all the other kids to keep their distance and that there would be no talking allowed in the car today. This was my desperate attempt to keep my son’s anger in check.

Within a minute of everyone taking their seats, my son began tipping my other child’s car seat over, with him still in it.

So I calmly escorted all the kids out of the car, one by one, until it was just my son and myself.

I told the other kids to head back to the school office and hang out there until he felt better.

...45 minutes later, we’re still sitting in the car, waiting for him to come back to his senses, to have enough self control to not hurt the other kids. He wasn’t in a rage, but he was somewhere else in his mind. The kid I had in the car was cold, distant, defiant and unwilling to budge. I also knew that he was on a verge of a rage if I pushed back at him.

As the parking lot cleared out and we were the only car remaining I saw how ridiculous the situation looked. Basically, he was calling all the shots and had control of the situation. But before you shake your fingers at me, let me explain.

I decided to allow this to happen. In the past whenever he was in this “mode” I would try and force my will on him. I would take control of the situation, force him into a timeout or into a car seat. But every time I’ve done this, the situation escalates, ending up with my son hurting me as he rages.

So this time I wanted to wait it out, to see what would happen if I waited for his brain chemistry to correct itself, for him to return back to me. Also, I couldn’t risk putting any of the other kids in harms way when trying to drive him home.

Towards the end of our standoff, he got up and climbed on top of my car, threatened to brake off the windshield wipers and twice, he took off on foot walking away to who knows where. During this time I said very little and kept a safe distance.

Then he turned to me and calmly said, “Lets go home”.

A sweet moment, but it wasn’t over yet. I picked up the kids from the office and requested help from the principal to help keep my son in check. Once we were on the road and only a minute away from home, he tried to open the car door while I was still driving. I don’t think he would’ve jumped out, but he was trying to scare the other kids. As he became more threatening, I pulled into my driveway and quickly removed him from the car, while locking the other kids inside to keep them safe.

From there he took off on his scooter, only to return 5 minutes later saying he was ready to go inside and start his homework. My son was back.

Yesterday, I asked my son what he was experiencing from his viewpoint during this whole event. He said, “When I heard about my reading homework I got really mad, then the anger grew more than ever and it was like I was sinking down inside my body. As I went inside my body, another bad soul came out acting bad and angry. The entire time I was stuck inside my body trying to do the right thing and listen to you, but I couldn’t until I came back.”

You know, his description seemed to perfectly match what I saw too. It does seem like my son disappears into his anger, once in that “mode” he isn’t reachable. But once he comes out, he returns to his normal self. I wouldn’t say this is anything like multiple personalities, it’s just his brain shifts gears and he gets lost in it sometimes.

Can anyone else relate to this?

Well after a day like that, I wouldn’t call it a success, but I felt the standoff was much more bearable then a rage, but as today showed us, we still have to suffer through his rages because there are times when he has to be separated and a timeout can’t be avoided.

Being that it took both my husband and myself to hold him down today, I’m afraid that our month of stability is over. And that makes me sad.

But we’ll see what tomorrow brings.

Thursday, October 14, 2010

Wanting Accommodations

Today I’m sharing a selfish desire. Sometimes, I want accommodations. I’m not talking about housing, but about getting a particular need met for my son, an uncommon convenience.

I know this isn’t how the world operates, we all have special needs to a degree, whether we’re running late and need a shorter line or we can’t eat glucose and need specially prepared foods. Sometimes our needs are met and sometimes we have to suck it up and deal with it.

This is where the selfish part of me wants to throw a fit.

Last week, I took my 3 boys to buy halloween costumes after school. This was something the younger boys were eagerly anticipating and since it was friday and we had no homework, I thought I would surprise the boys and take them shopping.

Mistake #1. Never do surprises, even good ones can cause my oldest too much stress.

As the boys ran up and down the aisle picking out their favorite costumes, my oldest seemed to be enjoying himself. But after his brothers made their final choice, he started to stress about not being able to make a decision.

Mistake #2. Always plan ahead.

With my son not being able to commit to a costume, his stress started to climb. So I eagerly tried to show him options and encourage him with his creativity. At one point, I recommended him trying on the costume so he could see if it was too itchy, knowing that this would be a deal breaker.

Mistake #3. Never do things to stand out in a crowd.

My son liked the idea of trying it on, but there was no way he was going to do it in front of everyone. I could sense his stress increasing and his brothers were starting to lose their patience.

Mistake #4. Always shop with the boys alone, not as a group.

I could feel his anxiety increasing, so I tried to think creatively and came up with a brilliant idea (ok, maybe not brilliant, but at the time it felt like it). I told him that we’d take our costumes to the dressing room so he could place it over his clothes in a private area.

With some apprehension, he seemed willing to give that a shot. Hooray!

Well, my plan backfired. When we tried to get a dressing room with our costume the attendant said, “Sorry, you aren’t allowed to try costumes on in the dressing room.”

I looked at the woman with begging eyes, “Really? There’s no packaging on this item, it’s just hanging on a hanger, can’t he try it on for a second?”

With authority she responded, “No, it’s our policy.”


Instantly, my son was done with shopping. He wanted nothing to do with halloween costumes and just wanted to go home. I was very proud of him, he was doing everything possible to keep it together even though he was right on that line, but inside I was crushed. We were so close to getting his costume.

I remember thinking in my head... Are you kidding me! You have no idea how important this dressing room is to us right now. You have no idea what ramifications will come, the meltdown that’s waiting in the car. The hours of upset because his brothers have a costume today and he couldn’t get one.

I wanted to plead with the woman, to beg for an accommodation, maybe I would’ve, if it weren’t for the look in my son’s eyes that said he was done!

It’s little moments like these that I selfishly get upset with society. I know that I made plenty of mistakes on this shopping trip and I know that this is in no way the employee’s fault, it’s just a fact of life that the things that my son may need aren’t easily seen by society. Unlike those on crutches or a person with a sight dog, my son’s challenges are invisible.

I would be lying if I didn’t say that sometimes, I just wish I could hold up a special card that symbolized his unique need, allowing me to make the world easier for him. I wish I had the power to make shopping for a halloween costume a fun experience, I dream to give him back his childhood.

Tuesday, October 12, 2010

We’re Doing OK

I’m happy to report, that since our last increase in Trileptal a month ago, we’ve seen a lot more stability. Things are still a challenge and there are days that he’s right on the line of going into a rage, but usually he comes back from that line. I can also tell that he’s handling stressors much better as he gets older. It seems he’s better able to pinpoint the things that are making him mad.

We had a bad day last week where he was very irritable, but he was able to explain that he was being teased by a student that sits next to him. I was happy that he was able to define his stress, which gave me the opportunity to resolve it.

Yesterday he was feeling stressed and had several moments of sadness for no reason. At one point, he told me that he wanted to get out of the house, that he needed to get away from everyone so he could deal with his feelings. Again, I thought this was great, he was able to recognize that he was overloaded and was thinking of ways to decompress.

This is very encouraging to me, it seems a lot of the same stressors are there, but his reactions to them are less severe.

We’ve recently discovered a form of exercise that he enjoys. With all his social anxieties he wants nothing to do with organized sports and in the past, his anxieties made bike riding too stressful, often leading to a rage. But with the medication reducing his anxieties, he was able to go for a very long bike ride with his dad and brother this weekend. They all had a blast, I think my son felt such peace in taking off and traveling for miles on his bike. Tonight, they’re planning another bike ride and I hope he has the same positive experience.

We’ve come a long way and I think we’re all getting wiser on how to manage and avoid stressors, his medication makes that possible. I guess you can say that we’re doing A-Ok!

Sunday, October 10, 2010

Email Me!

I wanted to let you know that I’ve added an email that you can use to get in touch with me. I know some of you may want to ask questions or share your stories but aren’t comfortable with making a public post, so I thought this may be helpful. Please no solicitors or mean messages! I look forward to hearing from you.

Friday, October 8, 2010

An Illness that Hides

Recently, I’ve had in depth conversations with everyday people in my life. Some were students in my fitness class, others in my church and even today my hygienist during a check up. What was awakening about these conversations was that each of them have experienced mental illness in a loved one.

Today, after discussing People magazine’s article about teen suicides, my hygienist shared with me that her husband committed suicide a few years back. She explained that he had some type of mood disorder. He was never officially diagnosed, but she believes he was bipolar. One day, after deciding to stop his medication, because he was feeling good and thought that he didn’t need to take it anymore, he went out to the garage and hung himself. She explained that there was no warning, he wasn’t acting different or giving stuff away. It was just an impulsive act.

Two weeks ago, a student in my class shared that her mother was bipolar and hung herself when she was only 8 years old. Another woman who takes my class on a regular basis has a son that is bipolar and she hasn’t seen him for several years. He decided to stop his medication because he felt good, then he left his wife and children to live a life on the streets. To this day, she said that she watches the news for stories of a man found fitting the description of her son.

In my church, I’ve met three women with children suffering from mental illness similar to my son’s. Several are doing good, currently under treatment and taking medication, while another is lost since he’s stopped his medication after starting college.

What strikes me today, as I think about all these stories, is how they seem to be everywhere. It seems odd that the doctor’s talk about how rare these illnesses are, yet I’m continuously surprised by another familiar person sharing their once hidden story.

I don’t know if it’s the phenomenon where once you drive a particular car, it seems everyone has one, but regardless, I’m convinced that mental illness is everywhere and I’m surprised on how well it hides itself. I’m also surprised that with so many people having first hand experiences with it that it still has a stigma.

Another thing that struck me, was how common it was for those suffering with mental illness to stop taking their medication because they felt they didn’t need it anymore. It makes my stomach ache just thinking about the consequences of those actions.

I don’t know what lies ahead for my son, but I hope to teach him today the importance of staying on his medication. It’s right up there with the importance of staying off drugs and alcohol.

I hope that we can all learn from each other as we raise our children to become thriving adults. I hope that the stigma of mental illness vanishes, allowing those who’ve lived through it to teach those of us that are still on this journey.

Nothing is learned from being hidden. We need to open up and help one another.

Tuesday, October 5, 2010

Standing Up

Recently, we were at a gathering where all the kids were playing in one room and the parents were visiting in the other. During this time, our son became upset with his youngest brother and was rough with him in front of the other kids. After this incident, our 7 year old middle child overheard all the kids talking about his big brother and how mean he is and how bad he was.

Feeling uncomfortable with the situation, our middle son asked me later that night what he should do in these situations. He explained that he knew he wasn’t allowed to talk about his big brother’s illness with the other kids, but he still felt like he should do something.

When I asked him what he did do, I was utterly impressed! He explained that he turned to all the other kids and said, “you need to stop talking about my big brother because you’re making me uncomfortable!”

Wow! I looked at him and told him how proud I was because he handled that better than I could’ve myself. I don’t know if I’ll ever know the right answer to these situations, but his response seemed perfect to me. I also admired his courage to stand up to the group, where remaining quiet would’ve been so much easier.

I also realized that as my boys grow, they will be facing new challenges with their brother’s illness. Instead of just the day to day relationship with their big brother, they’ll be faced with peer issues. How other kids may react to their brother and what impact that has on them. This is definitely new territory for us, but after hearing how my middle child handled himself, I think we’re headed in the right direction.

Sunday, October 3, 2010

Trileptal in the News!

According to The New York Times, Novartis, the manufacturer of Trileptal, agreed to pay $422.5 million to settle the criminal investigation into the marketing of Trileptal and 5 other drugs for off-label use. This includes the use of Trileptal for bipolar disorder. The drug was only approved by the FDA for anti-seizure use. Doctors may prescribe drugs for off-label use, but companies can not market it that way. Federal prosecutors accused Novartis of giving kickbacks to doctors, but the company denied doing it. (Wilson, 2010) You can read the article here:
My son takes trileptal. When I recently tried to have it refilled, I was told the manufacturer had it on backorder. So my first concern is that my son may have a challenge in getting his prescription filled if this lawsuit affects the availability of his medication. And second, I wonder if my doctor was influenced in any way. I would say “no”, since this abuse happened before 2004. Also, this was the 3rd mood stabilizer that my son was put on. Since it wasn’t a first choice of hers, I doubt that our doctor was influenced in any way. But it makes you wonder what influences our doctors may be exposed to.
So what are your thoughts?

* * *
The New York Times
By: Duff Wilson
Published: September 30, 2010
Consulted: October 3, 2010