Saturday, December 27, 2014

Starting Wellbutrin for Bipolar Depression

Winter has hit and so has my oldest son’s depression. It seems to peek up it’s ugly head every winter. This time, we decided to do something about it and take our psychiatrist’s recommendation to start Wellbutrin.

Of course I have my reservations. I hate that he has to go on another medication, but I couldn’t ignore my son’s pleas for help. Every winter we notice a change in him that immediately effects his school performance. Classes that he once had all A’s in, start to show a series of F’s. And soon he’s failing the class. It’s disturbing to see the drastic change, I’m talking about going from all A’s to all F’s, it’s like his brain has turned off. He can no longer take notes, his test scores drop to a dead “0”. When I ask him if the class is getting harder for him, he admits that it's not getting harder but rather he just can’t keep up, it all becomes overwhelming.

He then starts to feel isolated at school and he talks a lot about bullying, but he can't give any specific examples. He tells me that he has noticed that he once looked forward to seeing his friends at school, but now he just prefers to be alone, and he hates this. He also shared that he no longer enjoys the things that he once did.

He is overwhelmed with depressed thoughts and can’t see a positive future for himself, instead he talks about wanting to drop out of school and at his worst he talks about not wanting to live.

A week before Christmas he was overwhelmed about school and started to beg me to allow him to take Melatonin after school so he could go to sleep and escape all his bad feelings. I found this to be very concerning. Of course I denied his request and tried to offer other methods of coping, but I couldn’t escape that sick feeling in my stomach that one day he may resort to this type of escapism and serious harm himself. Or worse.

Then there was my son’s request for a medication that can help him with his depression. “I’m worried that my depression will come back strong during Christmas vacation, as it does every year.”

So after much prayer, discussion and torment, we started him on Wellbutrin the first day of Christmas vacation.

So far, we’re cautiously monitoring him.

It’s so difficult to make these decisions as a parent. I feel the weight of responsibility heavy on my shoulders. I want only what’s best for my son, yet I know that choosing the wrong treatment can have severe consequences. It stirs up anxiety. These decisions wear me down. I am so tired.

You would think that it gets easier over the years, especially with two kids on medication, but it doesn’t. I still read the list of side effects with dread and research our choices before making an educated decision. If anything, I think I just get better at worrying. I’m more aware of what can go wrong. I’m aware from past experience that doctors can give bad advice and that meds can make things worse.

At the same time, I know that we’ve seen the most improvement from medication. That my oldest son, for the most part, is living a very fulfilling life. He’s been experiencing meaningful friendships and has felt teen crushes. He’s more plugged into our family and experiences joy. We have medication to thank for that. I think the hardest part to accept is that my son’s mood disorder will forever require medication adjustments. There will always be ups and downs. We have not cured him, but have only made his illness manageable.

This will need to be done for the rest of his life.

This is bipolar disorder.

Wednesday, November 5, 2014

My Son Has Autism

After a long day of testing on Monday, my husband and I were told that our youngest son has autism (formerly Asperger's), ADHD and a possible mood disorder like his oldest brother. She called it “The Trifecta” because one condition is triggering the other.

It’s strange for me to type those words. Though my gut knew it to be true, it still feels weird to declare it. It gives me mixed feelings.

I admit that my first feeling is relief. I understand that my son will now have an opportunity to get the help he needs. After the appointment, I hugged my husband and cried in the waiting room. I could feel a weight being lifted off me. It felt so good. This was good news in a weird sort of way. Not that any parent wants their child to have a label, but when you’re watching your child struggle everyday, a diagnosis is the first step in turning things around. And let’s be honest, this news isn’t giving him a label for the first time, instead, it’s replacing the current label people have given him such as “brat”, “odd” or “difficult.” A label of autism may bring patience and understanding where it wasn’t before.

After the feeling of relief comes reality.

My son has autism.

And a possible mood disorder too?

What does that mean?

What will his future look like?

How will we be able to help him?

I don’t want to go down the rabbit hole of worry, but there are feelings a parent needs to process whenever your child gets a diagnosis. A diagnosis that will impact their child’s entire life. Sadness is one of them. My husband and I are going through that now.

There are still feelings of anger for having been dismissed by his previous doctor over a year and a half ago, but after talking to the current doctor, she was able to explain that my son “presents well” and that can lead to a misdiagnosis. But she explained that after spending enough time with him, she could see him slip into the ASD behaviors. She also pointed out that a lot of kids higher up on the spectrum don’t get diagnosed until they are older and to a certain extent they can handle things pretty well, like in a clinical setting, until enough stressors surround them, then they completely fall apart. Forth grade was that tipping point for our son.

On a positive note, she smiled and told us how adorable, bright and funny he is. Then she told me that I should read up on “2e kids”. These are twice exceptional kids, intellectually above average, but diagnosed with one or more disabilities. She believes this describes our son. She said it’s like a coin, you have one side that has all the struggles and if you flip it over, you have something pretty special.

I can’t argue with her, he is pretty darn special.

Then I have a final feeling. And would you know it... it’s hope.

Kinda funny after I recently said I was letting go of hope. But there it is, once again floating in front of me like a pretty, shiny balloon.

I have hope that my son will be approved for services and that we’ll be able to give him the support he needs in his school and at home.

I have hope that I will have access to the support I need in order to raise my son.

I have hope that we can now make a difference.

I have hope again.

Hello, old familiar friend.












Saturday, November 1, 2014

Autism—Will they see it too?

The day is fast approaching when our youngest son has his second assessment for autism. Honestly, I’m filled with anxiety. It’s making me sick. I find myself wrestling with anger, disappointment and great concern that the second opinion will also be unproductive. I feel it in my heart and in my gut that my son has Asperger’s. Yet the first assessment didn’t see it.

What do I do with that? How can something be so true to me, yet go unseen by a professional?

My husband and I have gone through the entire DSM 5 guidelines for Autism and my son meets every criteria. This process only proved to create more frustration as we questioned how it wasn’t diagnosed the first time.

I’ve read time and time again that Asperger’s, now referred to as autism or ASD, is hard to diagnose in high functioning kids. I’ve read that they’re often misdiagnosed, or simply considered gifted, that is until years later when it becomes more apparent.

How can we avoid this wasted time? How can we get the help he needs today? How can I be sure that on Monday the doctor will see what so many others have seen. From relatives to close friends, even strangers, all have expressed their sense that my son is on the spectrum.

Just this past Sunday I spied on my son after he ran out of service 10 minutes in. I found him where I always find him, he was outside playing video games in his head. As I watched him, I saw his rhymetic pattern, jumping over invisible walls and entering into new levels in his mental “video game”. It was a ritualistic dance, one I now refer to as mental stimming. When my husband approached him my son informed my husband that he was now up to 9,312 points! He was alone, isolated from everyone and was as happy as could be. As I stood there, enjoying his dance, an elder from the church approached me. As an usher, he’s had the pleasure of watching my son play outside every Sunday. Today was the first time he spoke to me. He looked over my shoulder to where my son played and said, “Have you ever seen the TV show Parenthood?” I replied, “Yes, I love that show,” knowing full well where he was headed with his innocent question. He smiled and said, “You know the character Max, the boy with Asperger’s?” With another smile I said, “Yes,” and pointed to my son who was jumping to the next level and said, “does it look familiar?” He only smiled and gave me a look of acknowledgment before he walked away.

This by no means is an indicator that my son is on the spectrum, I have lists of behaviors, 504 plan and interviews with family and teachers to support that, however this simple exchange reminded me that there is something there that people see. It is real, whether or not the doctor sees it, it is real.


Monday, October 13, 2014

Letting Go of Hope

I’ve had an emotional week this week after facing another unexpected challenge in our life. It feels like these trials just keep coming. Sometimes it feels like we’re cursed.

I’ve lived on hope for such a long time, for years, celebrating the New Year with enthusiasm because, “This is our year when things finally get better.” Or getting through another hurdle telling myself that things will get better, “just around the corner.”

But after this recent setback, I find myself losing that hope altogether. It’s not that I’ve given up, but I think I need to move towards accepting that things may never go as I’d desired and what lies around the corner is another challenge I have to face. That the waves of trouble will keep on coming.

That realization makes me angry and sad. I’m so tired of things not going our way. I’m struggling with jealousy as I watch others move so gracefully through life. Seeing videos and photos of other families is painful, why can’t things be like that for us?

My boys are growing and changing so much and it feels like it’s happening faster than I’d anticipated. I think a part of me had always hoped that our life would finally achieve that balance and that we’d experience a period of peace instead of feeling like we’re, “hanging on for life,” all the time. This latest blow, makes me face the fact that my children may grow through their entire childhood with this weight over us. That we may never achieve that place of peace.

With that comes a feeling of being a failure as a mother. I didn’t get to nurture my boys the way I wanted to. I didn’t help them grow spiritually the way I’d wished to. I didn’t have enough fun with them the way I desired to. It feels like there were so many obstacles in our life that I didn’t get to be the mom I wanted to be.

At the same time, I realize that if I continue to sulk and complain about feeling cheated, I’ll miss this precious time left with my boys. That if I’m not careful, I will miss all the good surrounding me. I don’t want to look back on these years of raising my boys with regret because I didn’t appreciate all that I did have.

So with that realization, I’m working towards a new resolution of letting go of hope and trying to embrace what I’m blessed with.

Because I really do have it good.




Thursday, September 25, 2014

Our First Suspension

Our youngest son received his first suspension this week. It wasn’t a surprise since he’s had 3 days in a row of escalating behavior at school, spending at least half the day in the office each day. On one occasion, I was told to pick him up early since he was already in the office three times.

His suspension was a result of his explosive behavior in the classroom. He got frustrated over his math work, combine that with his embarrassment over the class laughing at a word problem that he thought was making fun of him. “He instantly went from 0-60!”, said the teacher, as he described him ripping up his assignment, throwing his books, shoving his desk across the room and hitting two kids after being removed from the class.

It was noticeable that these tough days at school where taking its toll. Everyday after school he would make himself feel better by taking two long baths. It was pretty effective, he would come out completely refreshed and ready to take on his homework.

In order to avoid rewarding him with a home suspension, which is what he would prefer, he served his suspension in the office all day.

It was interesting to see that after his day long suspension, he was great. As the principal reported, “He did fabulously today. He completed all of the work he was given before the end of the school day.” My son shared that he loved the office since it was nice and quiet. It’s obvious to me that the classroom is overwhelming him, leading him to these outbursts. Once we removed the sensory minefield, he did great and he didn’t take a single bath when we got home.

This school challenge is new territory for me. It’s pretty much the opposite of my oldest son who kept it together all day at school, then exploded at home. With my youngest, the worst is happening at school.

Homeschooling is definitely worth exploring.

As for good news, I’m pleased to share that a state agency for autism in my area has reviewed my son’s case and has decided to accept him into their clinic to conduct a second opinion assessment for Autism Spectrum Disorder (ASD).

I’m so thankful to hear this news, especially since they told me that they don’t typically do second assessments with the exception of rare cases. They also said that they’ll be reviewing every documented I provide and will be including it into their assessment. Which is such a relief since our first medical team didn’t review any of this information that documents first hand accounts from family, relatives, teachers etc. As well as the list of behaviors and symptoms we’ve seen over the years. I feel like this is our only hope at this point.

I still realize that my son may be too high functioning to make it on the spectrum, but I’m hoping that the end result will be help, regardless of the diagnosis.

Along with my thankfulness comes anger.

Last night I was feeling a lot of anger over this whole process. When my husband and I reviewed the current DSM for ASD, it seemed to fit my son in every category. He’s definitely mild on the spectrum compared to others, but it’s having a major impact on his life. The principal has already explained how the kids are scared of my son. He’s socially isolated and he’s scaring the kids with his outbursts. The principal explained that if he had a diagnosis, he could teach the other kids about it and help them understand.

Another reason why labels matter.

I’m disappointed that the first doctor that performed the assessment didn’t take into account his history of behaviors. I later learned that this is part of the new DSM, doctors are suppose to use any past behaviors as qualifying behaviors for a diagnosis. Unfortunately in our case, the doctor used only what he saw at the time of the evaluation.

It makes me feel like we’ve wasted a year.

And my boy is now suffering because of it.



Thursday, September 18, 2014

Still Looks Like Asperger’s



My youngest son continues to struggle with growing anxiety, but I keep circling back to another feature.

Asperger’s.

I know that the first assessment done a year ago concluded that he wasn’t on the spectrum, but the admission of the evaluator not reading the notes we gave him on current and past behaviors, leaves me with so many doubtful questions.

It’s my understanding that under the new DSM-5 that for the first time, doctors will be allowed to consider a patient’s history instead of only the behaviors present at the time of evaluation. Our doctor chose not to do this, but only evaluated our happy-to-participate child. You see, my son was thrilled to be taken out of school for the assessment because he hates school so much, so he was engaged and willing in every test.

What the doctor didn’t see was my son pushing furniture around when becoming frustrated like he does at school and isolating himself, instead he was engaged.

Did this skew his evaluation?

I tried to share many of the behaviors we’ve witnessed over the years, but he dismissed them all. He even dismissed the school psychologist’s assessment that according to a neurologist we saw was screaming, “Your son is autistic”.

Here is one example:
I explained how our son hates toys and only wants to play with video games and talks in long monotone monologs about the game Minecraft.

The doctor’s response was, “We do not take into account ‘electronics’ as a child’s restrictive play.”

However, just tonight my son talked to my husband and I for over an hour about the history of video games. He showed us a chart he made diagramming all video game consoles dating back to 1973! He described in great detail the success and failures of the gaming systems, naming game developers dating back to the 1980s, such as Namco and Kaname. I haven’t even heard of these companies! He was able to provide interesting facts, such as how the sound production of Pac Man changed from the arcade game to the home system and how the home system had very painful game sound effects that failed to match the original arcade game, and as he described, “disappointing users”. This is a game that he’s never experienced first hand, but learned about on his own through online research. He also went into great detail about different gaming controllers and the difference of 1-bit and 32-bit visual graphics over the years. His lecture didn’t stop there, he even pulled up old commercials on YouTube dating back to 1985 showing me the original console advertisements. This all from a 9 year old boy!

How is this any different than a boy with Asperger’s who knows the history of horse racing. Does the fact that it’s electronics really make a difference in an assessment for ASD?

His voice was monotone and uniquely formal at times. He said, “Come again?” when needing me to repeat a question and acknowledged our leading questions by saying, “Ahhh, I see where you are going with this.” This is definitely unique language to our family and seems older than his age.

Our oldest son shared that our youngest sounded like he was giving a lecture to a class when he talks. He added, “He always sounds like that.”

This conversation was a special experience for my husband and I, we were stepping into his world and he was happy to share it with us. Compare that to earlier in the day when he told me that my questions about his day at school were annoying since they were a waste of his time.

Combine that with him spending recess alone everyday at school playing video games inside his head, not wanting to play with the other kids.

I can’t for the life of me see how this example doesn’t qualify as a restricted interest seen on the spectrum that’s affecting his social skills.

And for that matter, all the other features we’re seeing in his behavior.

Why does it matter?

Well considering that I had to pick him up early from school this week after he was acting out and refusing to participate and that his psychiatrist wants to double his dose of Prozac, I need to know what the underlining cause is of his challenges so that I can take the best course of action to help him.

This is why labels matter.

It points me in the right direction towards helping my little man.

So I’m going to seek another assessment.







Tuesday, September 9, 2014

Creating a 504 Once Again

My youngest continues to struggle in school.

Unfortunately, I’m not sure how to help him. So I’m starting with a 504 plan.

This week he was sent to the office to calm down after acting out in class. It was during the spelling test, he was putting his feet on his desk and refusing to participate. He told his teacher, “I hate school!”

I know for a fact that the spelling words weren’t an issue for him, I tested him the night before and he got them all correct, but still he didn’t want to participate in class.

When I asked him about it he told me that he was frustrated because they already had a spelling test on Monday. It was their pre-test. So in his mind, he had already completed the test.

He sometimes tells me that he hates school since it’s a waste of his time.

“It feels like a prison.”

When I asked him about recess he tells me that he plays by himself a lot. He tells me he’s playing video games inside his head. When I asked him if he would rather play with the other kids, he shrugs it off saying, “No mom, I’m fine, I need my alone time.”

I have a feeling his struggles are going to continue in the years ahead so I think it’s time to get an official 504 plan in place.

Thankfully his new principal agrees, telling me that to him it looks like my son has Aspergers. He also said that regardless of his diagnosis, he’s willing to give him whatever support he needs. I have to say, I’m loving this new principal!

Wish me luck.

* * *

This week I read two great articles I wanted to share with you, check them out!

Jordana Steinberg: ‘A story of overcoming’ mental illness
http://www.sacbee.com/static/sinclair/jordana/index.html

This article is about a girl who goes public with her diagnosis of bipolar disorder. It shares the tough journey through childhood from both the parent’s perspective and her own. It was heart wrenching at times as I read words that struck very close to home. It’s also interesting that the girl’s father is Senator Steinberg who was already fighting for mental health reform before he even knew that he had mental illness in his own family. Her description of her feelings of anger are remarkably close to what my son has shared and the mother’s words felt like my own. This article is worth your time!


“I Am Adam Lanza’s Mother” writer Liza Long: I’m not scared of my son anymorehttp://www.salon.com/2014/09/02/i_am_adam_lanzas_mother_writer_liza_long_im_not_scared_of_my_son_anymore/

This article is a follow up to the recent one I posted. I found it interesting that through her public exposure, they were able to get a diagnosis for her son, bipolar disorder. Since then, he was placed on Lithium and has been doing great. His mother no longer fears him.


Thursday, September 4, 2014

A Mother Shouldn't Have to Choose

From my very first blog post almost 5 years ago, I’ve carried a fear that there’ll be repercussions for writing about my son who has a mental illness. The last thing I ever wanted to do is harm my son or my family. To avoid this, I take steps to protect his identity and act cautiously when communicating with so many of you through email. I would love to post pics to show how my son is thriving, use my real name when communicating to other hurting parents, or respond to national news reporters, but I can’t take the risk of exposing my son.

So you can imagine my interest when I read Liza Long’s original story, “I am Adam Lanza’s Mother”, a post that went viral after the Newtown tragedy. I was impressed with her openness and so very thankful, yet I understood the risk she was taking. Which made her post all the more powerful.

Today she has written another post that exposes not her name, but her consequence for going public about her child’s mental illness.

In her recent article she wrote:
“And so my 750 words became an accidental but powerful manifesto for children’s mental health. In retrospect, I think that one of the things that resonated most strongly with parents in similar situations was the raw emotion in the piece. That’s because I, as the writer, was revealing truths to myself that I had been unwilling or unable to face. My first audience was myself.
So for me, and for many other parents, this is what “normal” looks like. People said that I was brave for telling my story. I did not feel brave; I felt helpless.”
I can relate to Long’s words. When I write to you, I write in a desperate place of feeling helpless. I’m a mom anxiously seeking answers for my child who’s suffering a terrible illness. Looking back, my blog has thankfully been a helpful tool for my son’s stability. I’ve been able to receive encouragement, direction, feedback and so much more from a community of parents who would otherwise be invisible to me.

So having experienced the benefits of sharing my child’s illness publicly, I was outraged to read that Long is now facing the consequences of her openness.

She’s being forced to choose between caring for her sick child or her healthy children.

This is a decision that no mother should EVER have to make.

Would a mother writing about her child’s cancer have to later choose between her children? Why is it any different for Long’s children because her child has a brain illness.

Some of you would argue that it’s for the safety of the siblings, but with the right support and medical care this doesn’t have to be an issue.

Long points out a very important reality:
“Families are afraid to speak up about or ask for help for their sick children, for the very real fear that they will lose their healthy ones, either to another parent (as in my case) or to the state.”
I admit, I was fearful of this in the beginning. I remember sharing with my husband that I was concerned about what I should reveal to the therapist at our son’s initial evaluation for fear that something I would say would bring harm to my other children. It felt a little like walking through a land mind. Would I say something that would make my entire family explode?

The stigma of mental illness is hurting not only those suffering, but the family that’s trying to help.

This has to stop.

If society is so scared of our kids, scared of what they can do to others, they need to pull us off the floor and onto our feet and surround us with support and resources. NOT force us back into a closet of isolation.

People need to know that kids get better when parents can ask questions, seek support and receive care publicly.

Research has proven that children surrounded by love and support have very positive outcomes. If we want to prevent the next tragedy, we need to embrace these families and support them, not tear them apart and ignite fear, forcing them to once again remain silent and helpless.

What is happening to Liza Long will only bring more harm to us all.

Out of fear of losing our other children, mothers will stop taking.

And sick children will not get the care they need.

God help us all.


* * *

I highly recommend you read, The Origins -- And the Price -- of My Accidental Manifesto for Children’s Mental Healtha Huff Post article written by Liza Long, the same writer who wrote, “I am Adam Lanza’s Mother” a blog post that went viral after the Newtown tragedy.

* * *

The Origins -- And the Price -- 
of My Accidental Manifesto for Children's Mental Health
Huff Post
By Liza Long
Posted: 09/04/2014 9:56 am EDT

Sunday, August 24, 2014

Retiring Baby


It’s the night before the first day of school. Everyone is in good spirits, some more excited than others, but it’s good enough. My youngest sat in bed, cuddling his little blue bear, “Baby”. I smiled as I remembered the first time I gave him that bear. He was a small guy, maybe 3 years old. He was going to bed and experiencing his typical nighttime anxiety, not wanting me to leave the room until he was fast asleep. I sat at the edge of his bed and picked up the little blue bear and put it into his arms. He quickly cuddled it. I told him that he needed to be brave to take care of “his” baby. From that day on, “Baby” became part of the family.

As a mom of three boys, this teddy bear was uniquely special. None of my other boys owned a special doll or stuffed animal. It never crossed my mind that all kids didn’t do this, that is until I had all boys.

I remember the panic I felt when we first lost Baby. I thought he dropped him in a craft store while I pushed him and Baby around in the cart. But later that night, I was so relieved to find him safely tucked at the bottom of a closet. I think I cried I was so happy. This bear had become such a precious symbol of my youngest son’s childhood. It had become a treasure.

Fast forward to the night before school this week when my youngest calmly got out of his bed and carried Baby to the closet. Next, he reached up onto his tippy toes and placed Baby on the top shelf of his closet. Then he walked back to his bed, announcing that he was now retiring Baby since he was going into the 4th grade.

And just like that, the little blue bear was put back onto the shelf. He was dirty and worn at the edges, but he represented a job well done, helping my little one feel safe at night for all those years.

My husband heard of this big announcement and declared that we needed a special ceremony to properly retire Baby, so he pulled the little blue bear back down and asked us all to place a hand on him as he spoke sweet words. All the boys giggled at the silly ritual, but I couldn’t help but cry.

My little one was growing up.

I too, no longer had my baby.


* * *





Saturday, August 16, 2014

Summer Bipolar Cycles

Summer is coming to an end. Thankfully the boys did better than expected. I have to say it’s been our best summer yet, especially for my oldest. But we still experienced some highs and lows in what appeared to be bipolar cycling over a period of about 1 week.

It all started when my oldest son woke up in a really great mood. He was so happy about his latest computer interest. He talked excitedly about it, following me around the house, chatting up a storm.

That should have been my first clue.

My oldest isn’t usually this “up”. At one point, he didn’t even skip a beat when I closed the door in front of him to go to the bathroom. He continued on in a very excited tone telling me about all his incredible ideas. Throughout the day he continued to update me about his project like an excited child on Christmas morning.

Then day two started with a big shift.

Hello irritability.

My oldest became very argumentative and was irritated by everything we did. As his mood progressed down this path, I started to see old behaviors. Blaming others, initiating fights, threatening us. It was sadly familiar from his younger days that often ended with rages. As I tried to navigate his behaviors, I kept reminding him that this wasn’t him, but his moods being off. Understandably for him, none of that mattered since it felt real. Mood or no mood illness, he was in a mood to fight.

As the day progressed, I tried to help him identify his feelings as they related to his actions. In a calmer moment, he clarified that, “Everything and everyone is bothering me!”

His mood continued for a handful of days. Thankfully he never escalated into a rage. But after a few days we had a light bulb moment.

My son’s sleep patterns had changed during this time. Instead of sleeping in as he normally did all summer, to our surprise, he was waking up early every day because he no longer felt tired. It even surprised himself.

He was cycling.

Once it dawned on us, it put everything into perspective.

He went from a stable, easy going kid who slept in, to a kid who woke up early every morning and cycled between being too happy, to being very miserable.

It really helped once my husband explained this to my son. I think for the first time my son could see proof of his illness outside of his moods. “It’s all connected Mom! I’ve been getting up early every day that my mood has been bad.”

And just like clockwork, the very first day my son slept in, the planets aligned and I had my son back to normal and he’s been doing great ever since.

Even my son recognized the difference when he shared, “I’m feeling better today, my brother was leaning on me and it didn’t even bother me!”

It made me think of all those years and all those rages so long ago.

He was cycling then. 

It was harder to tell since I saw very little stability to know what “normal” looks like for him, but seeing this recent cycle and the return of old behaviors in such contrast to what we have come to now know as “normal,” has validated for me our decision to medicate.

You may laugh and think, “Validation? You still need that?”

Unfortunately yes. I don’t think I’ll ever stop asking the question, “are we doing the right thing?”

But tonight I can rest in peace knowing that, yes, we are doing the right thing for our son.




Tuesday, July 1, 2014

Lithium 3 Years Later—Life is Good.



I’m sitting at a small, wooden desk, nestled into the corner of a beach house with an ocean view. A cool breeze drifts through my window smelling sweet like honeysuckle. Sunlight is dropping into the meadow creating an orange glow in the tall grass surrounding the house. In the distance I can see a mother deer tending to her babies, keeping watch as they nibble on the golden grass. I can’t complain about anything, life is really good right now.

We are 6 days into our week long vacation. I’ve been present, basking in the love of my family. Are things finally perfect? Nah, we still have the occasional meltdown from our youngest who’s easily overwhelmed and our boys still have a gift for finding the other’s weak spot, but considering our journey, life is pretty darn perfect right now.

The month of July marks the 3rd anniversary of our oldest son being on Lithium. Some of you have asked if we’re still seeing the benefits. I’m happy to share that we are. Our oldest continues to thrive in so many areas of his life and he contributes his success to Lithium. While packing for this very vacation our youngest had a friend over and I warned my oldest about the consequences of messing with his brother’s guests and my oldest quickly reminded me, “Don’t worry mom, I won’t do that, remember the last time that happened I wasn’t on my medication.”

He’s right, I don’t need to worry so much anymore. My oldest, now 13 years old (and taller than me) is getting so much more self control now that puberty is settling in, maturity has been a big helper. Sometimes I wonder if he still needs all his medication, then I’m reminded that he does when I see a small crack in his stability. Recently I experienced this when we were in line at a Starbucks. While waiting for a snack, his blood sugar was dropping and he started to have rapid mood changes. He started crying with tears running down his cheeks and seconds later he dropped his head back with uncontrollable laughter. All while strangers looked on. I haven’t seen these mood changes in years, so it surprised us both to say the least. Once he ate and his blood sugar stabilized, he was back to normal. Like I say, we only see small cracks.

My oldest finished his 7th grade year with honors. But that wasn’t his only success. He also did a class presentation all on his own, in front of his peers (a major victory) and socially he has grown too. He has a girlfriend. You might be surprised that I find this to be a good thing. It’s really helped with his self confidence and self esteem. It’s also exposed him to a bigger group of friends, opening up his world a little and giving him the confidence to go to events such as school dances. Their relationship is very innocent, which makes me happy, but I can see how much he has blossomed because of it. He seems to stand a little taller and feels like he fits in more at school. Years of living with a mood disorder can destroy a persons self esteem, but having a girl tell you that she likes you and knowing that she will stand by your side at school goes a long way in allowing him to see that he has value in this world and it’s more than just his mom who thinks so. Don’t we all need that?

Puberty has infected more than just one boy in my house. My middle son, at 11 years old, is already going through puberty and the changes are even more dramatic. Suddenly girls have become the most important thing in his life and the social circles just took on more importance. Gone is the sweet boy and inward comes a young man flexing his muscles and making sure he has on the best looking outfit as he rides by the house of the girl he loves. And texting, well let’s just say that it’s become his first line of communication. Oh man, my boys are changing so fast. I feel like I can’t keep up!

My youngest is doing pretty good. We’re still working on his emotion control. He tends to scream at a drop of a hat and his anxiety is strong too. We’re also trying to work on his social skills, helping him communicate better and we’ve reduced his electronic time to force him into the real world. Ironically, taking away his electronics hasn’t always stopped him from disconnecting from others. Just the other day I found him lying flat on his back on the couch with his eyes closed. When I asked him if he was ok he said, “Yep, I’m just paying a video game inside my head.” I wish I could say that this was the first time that this has happened.

While sitting on the beach earlier today, I watched my middle son fearlessly dive into the crashing waves and swim into deeper waters with confidence. Trailing behind I watched my oldest who’s always more cautious and my youngest whose anxieties keep him from trying new things, slowly inch further into the deeper water. Both keeping their eye on their middle brother. If middle brother was safe in the ocean, they too would be. I watched as my middle son recognized their timidness and joyfully called out to them to join him. They trusted him and followed.

In that moment I recognized that my boys are not on this journey alone. Beyond my husband and I, their middle brother is helping, along with their grandparents, their aunts and uncles, their teachers, their friends and even their girlfriends. They are surrounded by people who love them, who are helping to lead the way, no matter how deep the waters get. 











Friday, June 13, 2014

10th Annual Mood Disorders Education day


Well it’s that time again, time for Stanford’s Annual Mood Disorders Education day. I’ve had the privilege of attending this event many times and each time it’s a wonderful experience where I meet new people and learn new things about mood disorders in adults and children. If you’ve never been and live in the area, go now to the website to register and save yourself a spot. This is a FREE event, plus they serve you complimentary refreshments (bonus!).

Here are the details:

When:
Saturday June 28, 2014
from 8:30 am–2:30 pm

Where:
William R. Hewitt Teaching Center
370 Serra Mall
Stanford University
Stanford CA, 94305

Register: https://mded.eventbrite.com

Contact: Kathryn Goffin at kgoffin@stanford.edu

This event is free. However, they do ask that you register. Information about the event, including directions and a map, are on the registration website.

* * *

Here is a link to my review of last years event:

Unfortunately I’m disappointed to share that I won't be able to attend due to a prior commitment. But I still hope to post videos of the event once they become available online. If you yourself attend and want to do a guest post to share all that you learned, I would love that! Email me!

* * *

The Bipolar Disorders Clinic is part of the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine. We offer on-going clinical treatment, manage clinical trials and neuroimaging studies, lecture and teach seminar courses at Stanford University and train residents in the School of Medicine.

Clinic Chief Terence A. Ketter, M.D. is internationally known for his groundbreaking research on the neurobiology of mood disorders. More »

The Bipolar Disorders Clinic is also part of the Stanford Mood Disorders Clinic. Please see the Mood Disorders Clinic Brochure to learn about the clinic's vision and exceptional doctors and researchers, who specialize in the understanding and treatment mood disorders.


Friday, June 6, 2014

Boogie Men and Young Imaginations

Last year I wrote a post about my oldest son overcoming his fear of Slender Man. Today I was surprised to see several urgent emails in my mailbox from NBC Nightly News and the Today Show wanting to see if I would be willing to share my son’s experience about Slender Man on camera.

This comes after the arrest of two 12-year-old girls who allegedly stabbed their friend 19 times. Acccording to NBC news, the girls blamed their violent act on Slender Man.

I quickly declined the interviews, but asked my son about his feelings of Slender Man today.

First I should note, never did my son think Slender Man was real, instead, it was something that creeped him out until he bravely faced his fears in the woods one evening. For us, Slender Man was an opportunity for our son to face his fears head on and experience the peace that followed.

Today my son no longer fears Slender Man. He was actually surprised when he heard the news story saying,“Why would those girls want to kill someone for Slender Man? Slender Man is a character in a game that you run from—that doesn’t make sense!”

Gone is Slender Man from my boys’ imaginations, but we’ve faced other online mythical creatures since then. Such as “Jeff the Killer” a mythical creature who tells you to “go to sleep”, then once you do, the creature kills you. For about a month, this made sleeping a challenge for my youngest who then feared falling to sleep.

I’m not going to blame the internet for these experiences, though they’re scary and unfortunate, they’re nothing new to our society. When I was a kid, I was terrified of dolls that could kill you or poltergeists that came out of tv sets. As far as I’m concerned, there will always be boogie men and young imaginations. 

If you ask me, Slender Man did not cause this crime. I think it’s a waste of time to put all of our focus on Slender Man and shame the creators of this mythical creature.

Instead, we need to dig deeper and put our energy where it will make a difference. 

Let’s stop looking at the cartoon and look at the girls before us.



In case you missed my original post, here it is:

'Slender Man' Cited in Stabbing Is a Ghoul for the Internet Age

Friday, May 23, 2014

Discovery Health Psych Week: Must See TV

Link to Video:
http://www.discoveryfitandhealth.com/tv-shows/psych-week/videos/bodhi-faces-his-own-demons.htm

It’s mental health awareness month and Discovery Health is doing their annual Psych Week. Each day they will be uncovering different mental illnesses and show how people are coping with them. If you aren't able to view this programming on your tv, check out Discovery Health’s website for the many video clips available for previewing.

Here is their schedule:

Monday May 26th:
8 PM: Born Schizophrenic: Jani's Story
9 PM: Born Schizophrenic: Jani's Next Chapter
10 PM: Born Schizophrenic: Jani and Bodhi's Journey

Tuesday May 27th:
8 PM: The Woman with 15 Personalities
9 PM: The Town That Caught Tourette's
10 PM: 20/20 Mysterious Minds

Wednesday May 28th:
8 PM: This Is Autism
9 PM: I'm Pregnant And...OCD
9:30 PM: I'm Pregnant And...Bipolar
10 PM: 20/20 Mysterious Minds

Thursday May 29th:
8 PM: Hoarding Buried Alive
10 PM: 20/20 Mysterious Minds

Friday May 30th:
8 PM: My Strange Addiction
10 PM: Sleep Sex

Saturday May 31st:
8 PM: Born Schizophrenic: Bodhi's Story
9 PM: 20/20 Mysterious Minds

Sunday June 1st:
8 PM: Hoarding: Buried Alive—10 Biggest Hoards Marathon
10 PM: Hoarding: Buried Alive Season 5 PREMIERE


http://www.discoveryfitandhealth.com/tv-shows/psych-week

Sunday, April 27, 2014

I Admit It, I’m Weak.

Lately we’ve been working hard on restricting electronics for all kids to help our youngest try new things and experience life beyond a screen. It’s been going pretty well, but I have to admit that I cheated today.

After spending all day Saturday breaking up fights, even forcing my oldest to “go for a walk” after his escalating behavior, and putting my youngest in his room for a long extended reading time after he trashed his room in anger. I needed a break from the constant bickering and stress.

I had deadlines I needed to get done in my home office and I needed to work in an environment that was peaceful and stress free. Plus the husband was out of town so I was on my own.

I admit it, I was weak.

So today I lifted the ban on electronics for the entire day.

And it was pure bliss.

Sometimes you have to do what works.

Even if there’s shame involved.



Monday, April 14, 2014

Return of the Rage

It’s been over 4 months, but last week my oldest son went into a rage again.

As a result, he now faced our new consequence for the first time:
He lost his bed, all forms of electronics and the privilege of riding in the front seat of the car for the entire week.

My son has been doing exceptionally well lately, like REALLY good, so this came as somewhat of a surprise. But over the years I’ve learned that a person is never cured by their medication, there will always be breakthrough symptoms from time-to-time.

This rage came after two days of increasing intensity in him. He explained it like this to me, “For the past two days I have a feeling inside that I want to fight someone. Yesterday I was getting into an argument with my brothers but Dad resolved it, but I still came back at them, just because I wanted to fight someone.”

I noticed that as his behavior escalated, he was doing everything he could to provoke me. For 45 minutes he attempted to escalate the situation, but I ignored his behavior or I tried to redirect him, but it seemed even then that no matter what I did, he was going to go into a rage.

It’s that Dr. Jeykell, Mr. Hyde syndrome. Mr. Hyde was in the house and he was grinning at me as he tipped furniture over, taunted his brothers and threatened to break things. His opposition was at an all time high, but I wasn’t going to bite his bait. Unfortunately that just encouraged him to up the ante.

The tipping point for me was when he grabbed a glass bottle and was threatening to throw it over the balcony onto the tile floor below. The last thing I needed in this situation was broken glass all over, so I grabbed the bottle from him as I wrestled him to the ground.

Then the battle began.

He swung punches at me, bit me, and scratched my arms up pretty bad as I tried to keep him on the ground.

I really wanted to avoid going here, but as my son later explained, “The rage was going to happen and there was nothing you could do to stop it.”

As we wrestled on the ground, my middle son called an adult friend to come to the house as well as my husband (who works 45 minutes away). I knew that I probably only had 10-15 minutes in me to hold him down, he’s taller than me now and much stronger. Plus I was already bleeding a little a few minutes in, so I knew we needed to get this under control quickly.

At one point he dug his fingernails into my forearm and was grinding them deeper into my skin. It felt like an animal had my arm in it’s teeth and was refusing to let go. I started to cry over him, begging him to let go of my arm, explaining that it was hurting me, but he only dug in deeper.

After a few minutes of trying to hold him down, my middle son came into the room, grabbed his brother’s legs and helped hold him down. As he held him he calmly said, “This is not you right now, this is your illness. Please stop hurting mom.”

Thankfully, as predicted, having my husband’s friend stop by de-escalated the situation quickly.

What followed when my husband got home was the removal of my son’s bed from his room to the garage, signally the beginning of his week long of consequences. This is our effort to teach our son that violence is never acceptable and won’t be tolerated. We explained that he’s managed to learn to “keep it together” at school, he’ll have to learn that skill at home too.

As usual, our son seemed renewed after the rage. The chemicals released in his brain during the rage seemed to “reset” his brain. He was handling his consequence well, even made a makeshift bed in his room and borrowed books since he’ll have a lot more free time without electronics.

The true test will be if he remembers this long week of consequences and chooses therapy steps over a rage the next time he feels like he needs to fight someone.

Only time will tell.

* * *

Today marks the end of the week long consequences. The bed has been returned and life is continuing as usual. I thought it was worth sharing that our son never once complained about his consequences. I find this surprising, in fact, I was prepared for a rough week. But instead, he was great. He seemed to accept his consequences and made a good effort to earn it all back. I’m pretty proud of him.

Sunday, April 6, 2014

Praising God

The last time I wrote here I was in a pretty bad place. I was facing a lot of fear regarding the future of my family. We were facing the uncertainty of my husband’s job along with the concern that he had an incurable cancer.

It all started when my husband’s routine blood work came back with markers for a possible blood cancer. As his primary care doctor put it, “I’m concerned about Multiple Myeloma—a cancerous situation.”

Over the past month my husband went through further testing all while we faced the uncertainty about his future employment. This period brought me to my knees to say the least. It felt like my foundation was falling apart, forcing me to lean on my true and only foundation, God.

I prayed through tears, fighting my mind as it imagined the horrible. One day I was so overwhelmed with all we had been through and was angry that we were facing the possibility of so much more that I attacked our kickboxing bag with a vengeance, letting my anger out with intense screams (something I picked up from my boys’ therapy sessions). I have to admit that it felt damn good! The only downfall was the embarrassment I felt when I realized that my neighbor was standing on the side of the house, next to my room and probably heard the entire thing.

I wish I could say that I was strong and was able to put my worries aside, but honestly, I felt like I was holding on for dear life. I was sicker than I’d hoped to be during this period of uncertainty. I think it had been too much stress for too long over the years. In my weakness, I leaned on God.

Then we got the results of another lab test for my husband and our concerns for cancer were heightened. But in God’s faithfulness, we got a call from my husband’s company securing his position the very same day. It was perfect timing, God knew that we were drowning under the weight of it all and He took that concern from us.

Flash forward to the weekend before my husband’s oncologist appointment and our home was filled with dread and anticipation. You could feel the heaviness in the air. Then I got a call from my biggest client telling me that she was quitting her business, thus I’d be losing the work. Follow that with my son’s staph leg infection from the Molluscum Contagious virus he acquired and you end up with my last post “Stop the Pain.”

So tonight I can share that our trip to the oncologist turned out better than expected. After reviewing all the lab results, the doctor was able to determine that my husband did not have cancer. In fact, he’s a pretty healthy guy. It was a false alarm.

PRAISE GOD!

Then later that evening I got a call to learn that my former client’s business was being bought out by another person and I would be getting my work back.

PRAISE GOD AGAIN!!

So you may be wondering, did I learn anything by going through this expereince?

YES! This experience gave me great perspective. I was able to see first hand how much my family is loved by family and friends. It made me appreciate the simplest things, it clarified the things that I love most. It made me realize how much I depend on my man, how much I need him, how deeply I love him. It also made me realize that I can lose everything in an instant and though I may remain broken in pieces, God is there to help me. He is always by my side.

It also reminded me that even though I’ve been through a lot of challenges over the years, I live a very blessed life.




Sunday, March 30, 2014

Stop the Pain!

Today I spent the day in urgent care with my little man. He developed a skin infection from a possible skin virus (still waiting for the final diagnosis.) It was an awful event, I had to hold him down while the doctor stuck a large needle into his infected wound 3 times, then watched her slice the wound open. My son screamed so intensely that his lips cracked and bled. At one point he begged for it to be over, only to hear the doctor say that she was only halfway through.

Sometimes life feels this way. We face so many painful events, begging to have the pain end, only to learn that we are only halfway through.

Life has been rough on us lately. Not because of our boys, in fact they’ve been really great. But life is kicking our a$$ and I’m screaming for the pain to end.

Please pray for us.


Sunday, March 23, 2014

The Field Trip and Public Meltdowns

This week I attended a school field trip with my youngest to a local science fair. It was a great trip until the end when it was time to leave. As you can imagine, my son went into a crying fit, yelling, “This is the worst day ever!”

Surrounded by his third grade peers, I was able to observe their reactions as they watched him from a far, it was obvious that they didn’t understand why my son was so upset. A few tried to console him, asking why he was crying, but my son barked back, “Get Away From Me!”

I tried numerous times to calm him down. I explained that he was making a big scene and that he may feel embarrassed later. But I don’t know how much he understood that.

He was upset about the usual things, unmet expectations, sensory overload, and the transition of going home. But what caught my attention this time was the impact his behavior was going to have on him socially.

In just a few years, he’ll be in middle school. How will he handle it then? Will he still have these outbursts? Will he be teased, or worse, without friends?

It’s tough. There are things I want to protect him from, but some things are completely out of my control. I can’t change him. I can’t make other kids accept him as he is.

But I can love him.

And that’s just what I did.

I held him close on the bus ride home and let him cry on my knee and reminded him that tomorrow will be a better day.


* * *


This week I saw this very informative video presented by a young man who has Aspergers. He’s part of a team called the Asperger Experts. My child doesn’t have this diagnosis, but I couldn’t help but see my son in everything he talked about. In the video he presents an intelligent perspective of why parents should not teach their kids social skills. If you have a child with sensory issues who is struggling socially, this is a MUST SEE video.

Aspergers’ Sensory Funnel: Watch this video to learn why teaching someone with Aspergers social skills should be one of the LAST things you do, and exactly what to do instead to cause rapid growth in someone with AS.

Link to video: http://youtu.be/7MCIiPumEQg





Then I came across the second video shown below and it was brilliant! You HAVE to watch this!!! It explains the critical mistake parents make with their kids who have sensory issues.

The Critical Mistake that Parents Make:
(If you are viewing this through your email, you’ll need to visit my blog online to view the following video: http://mysonhas2brains.blogspot.com/2014/03/the-field-trip-and-public-meltdowns.html)




Monday, March 17, 2014

Little Man In Trouble

Last week my youngest came home from school with a sad face.

He grumbled, “I got in trouble today.”

When I asked what happened, he said, “I was reading to the second grade class (a younger class he has read to in the past), when two of my classmates came in and told me I had to go back to my classroom.”

“When I got back to my classroom my teacher told me I was in trouble for leaving.”

Sensing a detail missing, I asked him “Did you ask your teacher if you could leave the class to read to the second grade class?”

My youngest adamantly protested, “No! I already got permission from the second grade teacher last week. She told me that I could come back anytime to read to her class.”

And that’s exactly what he did!

Unfortunately, it was without his teacher’s approval and during his own class time.

I can’t help but find the whole situation amusing…

Wednesday, March 12, 2014

Feeling Anxious

It’s been a while since my last post. Life is getting very busy and free time is rare these days. In a way it’s been nice, as my kids do better, I can focus on new things, like my home business. Lately its been growing and I enjoy getting back into the work I love. But balancing it all is still something I need to work on. I imagine that moms never get this figured out. (If you do, please send instructions ASAP!)

My oldest is doing really great, just a few spats here and there. He still hasn’t raged since we threatened to take his mattress away if he did. Instead, he’s loving the spring weather, everyday after school he goes to a nearby field to build huts and have adventures in the wild. He seems to come back renewed and glowing. Yesterday when he didn’t respond to the walk-e-talkie check I did, I had to go find him. There he was lying in a bed of spring flowers by a pond—asleep! Yes, he was resting and drifted off to sleep. It’s like his soul finds complete peace in the outdoors. I love that about him.

My youngest on the other hand is drifting towards anxiety. His OCD seems to be increasing a little and he seems stressed most of the time. I’m starting to see his breakdowns over changes in schedule and lately he cries a lot about wanting things to be “perfect”. It seems to torment him endlessly. Just the other night he was up well past his bed time stressed about a school costume he was wearing the next day. It didn’t match the storybook character perfectly and he couldn’t let that go. 

Right now we’re reminding him to breathe through his stress. He also takes baths after school to help himself relax. In addition we’re trying to decrease his electronic time, I admit it’s hard with this little guy since he doesn’t find joy in many other things. But we’re working on that too. His middle brother has jumped in to help by getting him outside to throw balls or skateboard. 

I think our next step is getting him back into therapy. We’re considering a new therapist for him. Not because we dislike our current one, but I think we need to look for someone who specializes in kids like him. Not sure what to call it, but someone who can help a child who has Aspergers traits and a heavy dose of anxiety who needs social training skills along with one-on-one therapy. I’m learning that this can be hard to do without the Autism Spectrum diagnosis. Our first attempt failed so I’m back to the drawing board. What’s disappointing is that our pediatrician said that we may need to seek out more assessments just to get the label we need to give him access to the therapy he needs. Of course all out of pocket! This is why labels matter. Having a child that doesn’t fit a label is very challenging. Without it they are denied the care they need.

Sigh... sometimes I feel like I can’t take another battle. 

I am exhausted and burned out.

Am I allowed to say that?


Sunday, March 2, 2014

Podcast and News for Parents Like You!

I’ve got some share-worthy links for you today. First is a podcast that you can listen to by clicking on the link below. It’s about diagnosing bipolar disorder in children and adolescents from Dr. Kenneth Towbin who is the Chief of Clinical Child and Adolescent Psychiatry from the National Institute of Mental Health (NIMH). Throughout the 27 minute podcast he answers tough questions many of you may have. It’s worth your time!

You’ll hear his perspective on how a lot of kids who have severe mood dysregulation may look bipolar as a child, but grow up to have anxiety or depression and not bipolar disorder as an adult. He digs deeper into the differences of bipolar disorder and disruptive mood dysregulation disorder and how irritability can be part of many types of disorders. He also shares how rages alone don’t indicate bipolar disorder and clarifies how to evaluate responses to medications. He then offers up alternatives to medication for the treatment of mood disorders.

Diagnosing Bipolar Disorder in Children and Adolescents

* * *

Next, CNN did a story this past month about Gianni Cristini, a young child struggling with mental illness and sucidal thinking since he was 4 years old. This story comes with an insightful video showing the heartbreaking experience, one you may relate to.

Suicidal at 4: Young and mentally ill
By Kyung Lah, CNN
updated 3:06 PM EST, Tue February 11, 2014
http://www.cnn.com/2014/02/10/health/lah-gianni-story/

* * *

Wishing you all a good week ahead. Hang in there… take it one day at a time, or even one moment at a time. Praying for you all this week.

Sunday, February 23, 2014

He’s Now Anemic

We saw my son’s psychiatrist last week and after looking at his blood results, he’s determined that my oldest son is anemic. After sharing my concerns of him barely eating at dinner every night, the doctor weighed him and confirm that he isn’t gaining the weight that he’s suppose to for his growth in height. So now the question remains, is he anemic because he refuses to eat, or is his appetite decreased because he’s anemic? Our psychiatrist isn’t sure.

I did ask about his medications, but most of them list weight gain as a side effect. Being a naturally skinny kid, he’s never experienced that. At this time the doctor doesn’t think this is related to the medications, especially because he’s been on them for a long time and the decreased appetite seems to be more recent.

So now we’re being referred to his primary care where we’ll begin further testing and see if we can figure out what’s going on. In the meantime, my son complains that it’s hard for him to eat most meals because he doesn’t feel hungry, but he does acknowledge that he feels tired and weak most of the time.


Sunday, February 16, 2014

Genesight Testing for Medication Guidance

Recently I attended a support group where I learned about Genesight testing from Assurex Health. This testing uses pharmacogenomic technology to look at your genetic makeup and determine which medications may be the best based on your DNA. It’s easy to administer, just a cheek swab and a few weeks waiting while it’s sent to the lab. The testing specifically looks at medications used to treat behavior health conditions such as depression, anxiety, schizophrenia and bipolar disorder. I also know of a local doctor that’s testing his autistic patients. Basically the test helps determine what meds to try and what meds to avoid. This sparked my curiosity to say the least.

My friend had her son tested and shared the results with our group. It outlined 3 categories of medications: “green” (use as directed), “yellow” (use with caution) or “red” (use with increased caution). It also was able to determine if folic acid was being metabolized properly. According to my friend’s doctor, folic acid is important for the brain when it comes to utilizing the medications given to the brain. In my friend’s case, they determined that his body wasn’t metabolizing the folic acid effectively, thus explaining why for years the meds weren’t as affective as they should’ve been. The doctor is now able to address the folic acid deficiency with a form of supplemental folic acid that’s already broken down so it can easily be absorbed.

The idea behind this testing is that doctors can receive individual insight into each patient and make better medication decisions, thus minimizing the trial and error method. Wouldn’t that be a blessing! To think we could’ve avoided some of the bad interactions we experienced over the years. This is definitely worth looking into. At this point, I’m not advocating this test, but just wanted to share with you what I found. I’ve requested this testing for both of my boys and look forward to discussing it further with our psychiatrist later this week. I’ll let you know if we pursue it and if we do, I’ll share our results.

If you have experience with this test, please share with us below!

* * *

Gene test can help recommend best psychiatric medications for patients

Monday, February 10, 2014

When They Refuse to Eat

Lately I’ve been challenged with trying to get my oldest son to eat dinner. He’s always been pretty picky, but lately, to my surprise, he’s become even more so. I worry because he’s a growing teenager and he’s eating like a bird at dinner, sometimes only eating 1 or 2 bites. I’m not worried about him starving since he eats breakfast and lunch on most days (mainly carbs), but even then it can be like pulling teeth. Why doesn’t he want to eat? Is it his sensory issues with food? Are the meds affecting his appetite?

It seems that the more we encourage him to eat, the more he pulls back and won’t even try. I think it may be about control, food is something he can control. This concerns me because most eating disorders are about control. I definitely want to avoid that!

Parenting books advise to not feed him “go-to” foods that he’ll eat, because if you wait long enough he’ll get hungry and eventually eat with the family. But when we pursue that direction, his moods become unstable as his blood sugar drops. It just isn’t worth it.

So we decided to back off. I’m not going to encourage him to put something on his plate. Or force him to try things. I’m letting him have all the control and hopefully in time, he’ll decide to eat more.

Have any of you faced this, and if so, what worked?

Wednesday, February 5, 2014

Our Great Adventure


It all began one late evening while reading CNET when I came across a news article advertising an upcoming event celebrating the 30th Anniversary of the Macintosh computer. This event was advertised to have 7 of the original 10 Apple employees, over 100 members of the Macintosh team, along with key figures that were part of creating a personal computer that helped change the world. This event was taking place in the original hall where Steve Jobs introduced the Macintosh for the first time. The evening would include 3 separate panels sharing their stories first hand to an audience filled with authentic Apple fans.

I have to admit, my heart started to race. I thought, “This would be incredible for my son!” As I looked over the details I soon discovered that the tickets to this special event were pretty expensive. But my hope wasn’t shattered just yet. As I considered my options, I decided to go for it, even if it meant I had to beg a little.

I quickly wrote an email to the sponsors of the event. I told them about my oldest son and his challenges and how he’s been inspired by Apple and Steve Jobs. I explained how Jobs’ quote is hanging on his wall and how he feels like the “square peg in the round hole,” yet my son is determined to change the world through technology. I then asked if they would consider sponsoring my son’s attendance to this event.

Now I knew this was a long shot, but a part of me had a really good feeling about it. In my heart I knew my son needed to be at this event, I knew that this could be life changing, it would give him hope and a vision for his future. At the end of the day, isn’t that what we all really need.

To my surprise I had a response by the next morning. “Yes!” They would sponsor my son, not only that, but they were happy to give me a ticket as well. But that’s not all, Grandpa wanted to be a sponsor too, so he got us our hotel room and a friend who works for Apple gave my son an official Apple shirt and employee name tag. As giddy as two kids on Christmas morning, we were set for our great adventure to Silicon Valley!

We started our fun with a visit to the Computer History Museum. Oh, if only you could’ve seen my son’s eyes light up when he saw the original Apple 1 computer signed by “Woz” or the original pong video game. We had so much fun exploring this museum. I highly recommend it if you ever visit Mountain View, CA.

Apple 1 computer signed by Steve Wozniak, “Woz”

After that, we went to Google Headquarters and snuck onto their campus and took pictures of us on their Google bikes. Which if you haven’t heard, are these fun bikes painted in google colors. The bikes are laying all around the campus for employees to use to go from one place to another. All they have to do is grab a bike, ride it, and leave it for another employee to use. We were seriously “geeked out” over it.

Google bikes on campus

Google Campus: “Googleplex”

That evening we attended the amazing Mac 30th event, it was so fun to listen to the original engineers share their stories. My son has a true appreciation for history so he “got” the significance of being in this room filled with Apple’s historical figures. We thought it was so cool to see the once 14 year old boy, Chris Espinosa, who was among the first employees of Apple computers when they were still working out of the garage of Steve Jobs’ boyhood home. This once child was now an older gentleman, looking like a “grandpa” to my son’s delight. My son and I talked about how years from now he’ll be able to share with his own kids what he heard from these inventors first hand.

Chris Espinosa takes the stage

The band played a few tunes to start the event

The next day we decided to see historical sights in the area, first stopping by “The Garage” where Jobs and Wozniak started Apple computers. It was funny because we were one of 4 other cars there taking pictures. Even though this is an official historical sight, we tried to keep a respectful distance since Jobs’ step mom still lives there. Next, we stopped by Apple Headquarters, or otherwise known as “The Mothership” as referred to by serious Apple fans. Unfortunately for us, the security was much tighter but we were still allowed to take some fun pictures. Then to top it off we visited the original office of Google as we strolled through Palo Alto.

Original garage and home to Apple Computers

The “Mothership,” Apple Headquarters in Cupertino, CA

Google’s first office

After that we went to the final home of Steve Jobs and walked the neighborhood, knowing that we were walking on the same sidewalk where Jobs walked during many of his meetings. My son shared that, “Steve really enjoyed his walks”. I think my son feels a connection to Jobs. After all my son has been through, I think that my son has found a place where he belongs. Where “geeky” kids can be superstars, where thinking differently is rewarded and where his passion for technology can have purpose. So this walk, wasn’t just an ordinary walk, it was following the footsteps of a man he admired and dreamed to be someday.

Steve Jobs’ neighborhood. The sidewalk in front of his final home.

I wish I could adequately put into words how amazing this trip was for the two of us. Not only were we enjoying our shared passion of technology and Apple, but I had two whole days to pour into my son and to spend one-on-one time together. I have to admit, my kid is pretty darn cool! There were no doctor appointments, no homework, and no timeouts. It was just a mom and her precious son sharing their lives together on a once and a lifetime adventure. This trip was priceless. I wish I could do it all over again.




Sunday, February 2, 2014

Mental Illness on 60 Minutes

Link to Video above: http://youtu.be/c-jEeiyirjc

This is one of the most important stories on mental illness in our youth. Everyone needs to watch this story, it demonstrates the desperate state of our mental health system and the crisis that families are in. Virginia State Senator Creigh Deeds shares his story about how his own son who suffered from bipolar disorder stabbed him repetitively only hours after failing to get the care he needed in the emergency room because the hospital didn’t have a bed available. As he strongly pointed out, “The system failed my son tonight.”

If love alone could fix this problem, Senator Deeds would have his son today. But instead the scars on his face will forever remind us all that love is not enough. 

America needs to change how mental illness is treated. Families can’t wait any longer!

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Click here to go to the main page. From there, watch all three videos:
http://www.cbsnews.com/news/mentally-ill-youth-in-crisis/



Tuesday, January 28, 2014

The Gift

Here’s to the Crazy Ones YouTube Video:
http://youtu.be/8rwsuXHA7RA

Over Christmas I came up with the idea of making a typographic poster for my oldest son of the “Here’s to the Crazy Ones” quote by Steve Jobs. I know my son loved the quote and is a big Steve Job’s fan, but I had no idea just how much he identified with it. Flash forward to Christmas morning when I casually handed my son the wrapped gift, telling him it was a little something I made for him. What happened next caught us all by surprise. I watched as he curiously tore away the paper, stopping just as the first few lines of the quote was revealed, then he slumped down and held his face as he started to sob.

For a moment we all were stunned, then we saw his smile through tears. He loved it. He really, really loved it. For whatever reason, this gift spoke to his heart. As he sobbed tears of joy, I grabbed him and hugged him with tears of my own, followed by my middle son who himself was overcome with tears.

Later Christmas morning, as he proudly carried his framed poster up to his room, he told me, “This is my favorite Christmas gift!”

I hope to never forget this precious moment.

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Here is the famous quote:
“Here’s to the crazy ones. 
The misfits. The rebels. The troublemakers.
The round pegs in the square holes. 
The ones who see things differently.
They’re not fond of rules. And they have no respect for the status quo.
You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. 
Because they change things. They push the human race forward. 
And while some may see them as the crazy ones, we see genius.
Because the people who are crazy enough to think they can change the world, are the ones who do.”
—Steve Jobs
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Check back soon for when I share a special adventure inspired by this gift…


Wednesday, January 22, 2014

Interviewing Mama Bear



Today I got an email asking me some good questions and I thought it would be a perfect post since many of you have started reading this blog long after I started writing it. I’ll answers the questions below and if you have more, leave them in the comment section below and I’ll try to answer them.

I know this is a long post, so if you’re short on time and you’re already familiar with my story, skip to the last question where I share a very positive update about my oldest son you won’t want to miss!

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I’m new to your blog and I’ve been reading past entries to “catch up”. I now have a few questions:

1. When did you first start seeing symptoms (what age was your son)?
I specifically recall a dramatic difference in my oldest son’s behavior when he was 7 years old. Prior to that, I do recall that he was “strong willed”. He also had separation anxiety as a baby and as he got older he started to experience night terrors. I also remember that he didn’t like the children’s reading time at the library. I thought this was unusual since all the other kids were glued to the storyteller and my son seemed disinterested and didn’t want to participate. We saw the same thing at birthday parties, they made him miserable. Looking back, this may have been the early signs of anxiety and sensory issues—crowds and social situations were too much for him. He also was sensitive to sounds and food textures. I remember in kindergarten when he fought doing his homework. He also didn’t want to perform any of the school performances, instead of singing with the other kids he would just stand there refusing to participate. As the school year came to a close, I recall a strange incident at a friend’s house when it was time to pick up the toys. At one point my son was hiding under a table, screaming and I couldn’t get him to come out. He had an odd, impulsive energy about him. I remember thinking, “What is going on with him?”

By the time he was in first grade, the teacher started reporting that he was putting his head down in class, refusing to participate and covering his head with his hood. She said that during circle time he would isolate himself from the other kids. We also heard him saying things like, “this is the worst day ever”, “I have no friends” or “I should just cut my head off”. This may have been the first time we started to see depression. It was during this year that we started to see rages at home over homework for the first time. He would become explosive, irrational and very angry over the smallest things. I remember a moment when I looked around the house and saw furniture tipped over, and my son was on the countertops in my kitchen acting like a wild person after hitting and biting me during a 3 hour rage. I knew then that this was serious. I remember that the behavior seemed so out of line with my son’s previous behaviors that I even started to question if my son was being molested at school (he was going to a new school). It was the only place where he was out of my sight and what I was seeing was so dramatically different. My investigation lead to nothing, but the rages continued.

What I started to see was Dr. Jekyll and Mr. Hyde. At times we would see our loving, sweet boy who wanted to please his parents and at other times his smile disappeared, his personality twisted into one that was very mean, hurtful, destructive and violent. It got to the point where we could tell by the look on his face and the tone of his voice who we were dealing with. We were definitely walking on egg shells.

Then over the summer, while on a family vacation with relatives, my son went into a rage in front of everyone. At one point we had him in a room behind a closed door and he was screaming that he wanted to kill everyone. Everyone could hear the screams and violent bangs against the door. After the rage, I clearly remember my son staring out the window and quietly saying, “I’m God’s mistake, I wish I was dead, I should never have been born.” When I came out of the room with him, I remember my mother-in-law comforting me and giving us feedback that what she saw was not normal kid behavior and she encouraged us to take the first step in seeking professional help.

I thought at this point it would be helpful to share that my son also recognized these changes in himself. 

The night before I approached my son’s doctor about trying the recommended medicine, I had a heart-to-heart talk with my son about what he thought about the whole situation and what he wanted to do about it. This is what he said:

“I’m a tornado, destroying everything and you two (his parents) are two large mountains that I’m trying to break through.”

When I asked him what he wanted to do about it, he said:

“I want the doctor to give me medicine so I don’t do bad things and act out. I want them to make my ‘bad side’ go to sleep so my ‘good side’ wakes up first.”

Prior to this discussion I remember very clearly a moment when my son was watching a home video of himself when he was younger. He said that it made him sad to see the old home video since “I was so happy back then”, unlike now.

His little brother’s response to the video was “Ah, that was when my brother use to be nice”.

Then one day, after running out of the house when he was in a rage, I found him sitting in the middle of the street. When I asked what he was doing, my 8 year old son said “I’m waiting for a car to run me over so I can die”. As I brought my son in that day, I held him in my arms as he calmly cried out to me, saying that he didn’t feel right inside and that something was wrong with him and that he needed the doctor to fix him. He described himself as having two brains. He said that he had a good side and a bad side and that the bad side takes over and make him do bad stuff.


2. What is the longest period of time that a medication has “worked” for your son?
I’m thankful to share that we’re currently in that time. Ever since my son started Lithium in July 2011, we’ve all seen a dramatic improvement. Only 12 days in on the new medication my son said, “I feel born again.” He started smiling and talking more, even wanted to plan playdates (which was huge since he was isolating himself prior). He said that he was feeling happiness for the first time. After the start of Lithium he went 57 days straight without a rage. This was a record back then, with rages being almost daily, if not several a day. Looking back, I will say that when he does rage, it feels different now. There is a different quality about it, it’s better. Today rages are so rare. I have to go months back in my charts to find one. I also see that they are clearly triggered by stress and his inability to manage stress. Lately, our modification plan has put an end to his rages. Just this weekend, he shared that he wanted to throw something, but chose to go for a bike ride instead to release his anger in a better way. Looking back, I can see how his rages had became a habit, the body’s programmed response to anger and stress, scientifically it has to do with neural pathways in the brain. Retraining the brain takes time and thankfully we’re headed in the right direction. 

(This is why I’m an advocate for early intervention. The sooner the child becomes stable, the quicker the neural pathways are addressed. Thus minimizing habitual behaviors in the future—old habits are hard to break!)


3. How many different meds has he been on?
He started on Tenex. Once his rages increased and he was diagnosed with a mood disorder, they added Seroquel. It was a major failure, making him suicidal and very depressed. We quit after a month and then added Trileptal, a mood stabilizer. We saw success, but over time he needed more stability. The doctor then added Depakote, which he quit after one dose since he had an allergic reaction. We then tried Lamictal, but his arm would feel numb, so we quit after a week. Then the doctor tried Lithium. It was a success and continues to be. My son also takes Melatonin at night to help with the horrific nightmares. Currently he takes: Tenex (helps with his impulses), Trileptal (helps with his Anxiety), Lithium (mood stabilizer) and melatonin for sleep. I never imagined that my child would be on medication, but ask him if it makes a difference, his response is, “You’ll have to kill me to take away my Lithium!” 

Just reading through my old notes to make this post reminds me of how much better my son is thanks to medication. 
(Please don’t use as medical advice, seek professional direction from a Psychiatrist.)

4. What books or resources have been the most helpful for you?
Two resources that are a must read are Raise Winning Kids without a Fight by Dr. William Hughes (Behavior modification plan for difficult-to-raise kids. It’s made a huge difference in our home.) Also, Magic 1,2,3. I’m always reading, I can go on and on about resources, hmm… maybe a future post...

5. Is there a light at the end of the tunnel? I know you can’t cure this, but have you seen consistent improvement in your son’s symptoms?
YES!!!! That’s one of my favorite things about my blog. My post are getting boring, well, because things ARE getting so much better. I really feel that most days I’m out of the trenches. Not only have the medications made a tremendous difference, but we’ve learned so many skills, my son included, that we didn’t have in the beginning. Also, my son is maturing and this is helping. It doesn’t mean that he doesn’t have a bad day or that he’s not sensitive to the world, but rather he’s better able to manage his illness than when he was younger.

I’m so incredibly proud of my son. He continues to work on his challenges and he always gets back up after going through a difficult episode. His resilience is mind blowing! Today he’s better at communicating, being social, having self control, controlling his anger, not raging, doing therapy techniques, maintaining boundaries that keep him healthy, knowing his limits, experiencing joy, love and fulfillment.

Before I finish, I wanted to share a small example that speaks volumes. If anyone has followed this blog for sometime, you’d know that we’ve had major battles in getting my son’s blood drawn. In one episode I recall where my husband was kicked in the head the entire time while driving my son to the hospital. He was seriously concerned that they were going to get into a car accident along the way. While at the hospital, my husband had to restrain my son while they drew his blood. By the time my husband came back, his arms were covered with bruises and scratches from my son viciously fighting back. Well this week, for the very first time, my son walked into the injection station, while I stayed in the waiting room and he had his blood drawn all by himself, at his own will!

Now that my friends, is miraculous improvement. 

And we’ve only just begun.

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If you have more questions, leave them in the comment section below, you can also email me at mysonhas2brains@gmail.com