Sunday, December 30, 2012

Happy New Year!

My kids are getting excited for the New Year celebration this week. We’re keeping it low key with a nice dinner thanks to my husband grilling us tri-tip along with some quality family time at home. Heck, as far as my kids know, that’s how everyone celebrates the New Year.

As I reflect on the coming year, I feel some excitement for positive change. As my youngest continues to have a positive reaction to prozac, I hope to see him thrive more, along with focused therapies to help him where he needs it most. On the flip side, I’m nervous for my oldest as school becomes more challenging and he struggles with bigger projects and demands, I only hope that his school can meet his needs. Either way, I expect that life will continue to be a roller coaster and I’m going to hang on and try to have some fun while counting my blessings.

Though I face many challenges in raising my boys, I love each of them with all of my heart and thank God for letting me be their mom.

I wish you all a wonderful year ahead and look forward to hearing from you as you travel through your own journey. Happy New Year my friends!

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Check back soon as I share the latest with my youngest son after seeing a Pediatric Neurologist this week.



Thursday, December 27, 2012

Open Letter to the President regarding Mental Health Reform

This week Michael Scofield posted this letter to the President of the United States regarding Mental Health Reform. I wish everyone would read it! It’s powerful to say the least and presents wisdom that only someone with his experience can acquire. If you aren’t familiar with Michael and his family, he is a public advocate for mental health reform while raising his daughter Jani who has Schizophrenia with his wife Susan and son Bodhi. I first came across this family on an episode of Oprah and also through the wonderful series on Discover Health called Psych week. Michael invites all parents with children who have severe mental illness to use his letter as a template to tell their own story and to mail it to the White House at the address provided below:


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Open Letter to the President of the United States regarding Mental Health Reform:


President Barack Obama
The White House
1600 Pennsylvania Ave NW
Washington, D.C. 20500

Dear Mr. President,

My name is Michael Schofield and I am January Schofield’s father. Of course, you don’t know who January Schofield is. You won’t…. until she kills someone.

Writing that sentence above makes me want to vomit. It goes against every fiber of my being. My daughter is only ten years old. She loves animals. She is a fan of the band Blink-182. If you meet her after reading my opening sentences, you would think me a monster. How could I call my own child a killer?

There is a chance that January will one day join the list of names that includes Adam Lanza, James Holmes, Jared Loughner, Seung-Hui Cho, and Brenda Ann Spencer.

Why on God’s earth would I connect my precious little girl to these monsters? Because she is no more a killer than they are. It is not my daughter that might kill.

It is what is inside her brain.

January (or “Jani” as she likes to be called) has schizophrenia, a psychotic illness. Psychosis can take many forms. It can manifest as auditory and visual hallucinations.

Sometimes, these voices can take the form of voices the victim actually knows. I have known mothers who live in fear of their children because one of the “bad voices” in their child’s head is them. Try to imagine having a voice filled with hate in your head. And that voice belongs to your mother. And you are desperate to silence that voice.

Is that why Adam Lanza shot his mother? Was it her voice that he heard in his head? Was he trying to silence her in the only way he could think of?

But perhaps that wasn’t the only voice.

Some of these voices are “command hallucinations,” meaning that they command the victim to do bad things, usually to themselves but sometimes to others. Did Adam Lanza hear a voice in his head commanding him to kill those children? Did he hear the voices of children he had never met in his head, laughing at him, telling him horrible things about himself?

When he was pulling the trigger, did he even see those children as they really were? Or was his mind showing him something else, something far worse than a child? Demons? Monsters?

People who suffer from psychotic illnesses do not see the world as we see it. They see another world, other people, overlaid upon our world, our people. When we go out in public, I must walk close behind Jani, ready to steer her away from walking right into people in front of her. She does not see them until I tell her they are there, even though they are right in front of her. She has to be reminded to see what is in our world because most of what she sees is not in our world. She looks down at the ground a lot because if she raises her eyes, they will drift up, above the heads of those around us, toward the ceiling, and fixate on something swirling high above our heads that I wish I could see but cannot. I must talk to her, not to make innocent conversation, although that is what it looks like. I have to make sure that she still sees me, still recognizes me.

For there was once a time when she didn’t.

As long as she still recognizes and engages with myself and those who love her and care for her, there is hope. But make no mistake. Every moment she is awake I am challenging a world that exists only inside her head, competing with it for her attention, and, more importantly, her soul.

There is no cure for schizophrenia. To manage it, Jani takes a staggering cocktail of medications that would put you or me in a coma. 350mg of clozapine (an anti-psychotic) per day. 75mg of chlorpromazine (another anti-psychotic, better known by its trade name “Thorazine”), and 750 mg of lithium carbonate (a mood stabilizer used to reduce impulsiveness). All this just so Jani can repress her violent impulses, the commands from her hallucinations, and function. And to meet her, you would never know she was on these powerful medications. She would happily run around the White House lawn, playing with Malia and Sasha. The only thing that might strike them as strange is that Jani would probably talk about “24 Hours,” or “Eighty” or “Eighteen.” She would introduce them to your daughters as her friends. And if they looked confused, she would run off by herself, perhaps into the Situation Room, or out into the Rose Garden. You would call after her but she would tell you she was playing with “Eighty,” that she and “Eighty” were having fun.

“Eighty,” by the way, is a hallucination, a young girl about Malia’s age. “Eighty” used to tell Jani to jump off the third floor of our apartment building with her. At least for the moment, “Eighty” is not doing that anymore.

I can tell you she would not hurt your daughters. You would probably find her enjoyable, a little blonde sprite. But that is only because of the anti-psychotics that she takes. Without those medications, her pre-frontal cortex will begin to erode, much as it does with Alzheimer’s. The pre-frontal cortex is who we are. I have watched my daughter’s personality erode and I have watched her struggle to come back. She can handle being in a classroom again (the classroom being “SED” or severely emotionally disturbed, the school system’s catch-all for children who cannot function in a mainstream class). For three years she could not do this and was educated in an empty classroom with a teacher and an aide. For two and half years my wife, Susan, and I maintained two separate apartments, one for Jani and one for our then infant son, Bodhi. Jani was such a threat to Bodhi’s safety that the Department of Child and Family Services told us to either send Jani to a residential facility (of which the only options were out of state) or they would take Bodhi. We refused to send our daughter away. We refused to give up on her. So we split our family apart to keep it together, something we were only able to do through the generosity of family and friends. We alternated nights. One night I was with Jani while Susan was with Bodhi and the next night we switched. We did not want Bodhi to grow up afraid of his sister and we wanted to reduce Jani’s stress level. And it worked. We now live under one roof again. Bodhi loves his sister and Jani, free from the worst of her symptoms for now, is able to love him back.

I still get tears in my eyes when Jani walks up to another child, a real flesh and blood child, and says, “What’s your name?” Such a simple act is a titanic accomplishment for Jani. My daughter is my hero, Mr. President.

But my promise that she will not hurt your daughters or anyone else only extends as far as August 8th, 2020. Because on that day Jani will turn 18 and I will have no legal ability to influence her, to help her, to save her life and, quite possibly, the lives of those around her. Everything that Jani has achieved and still might achieve could be lost. She is allowed to refuse her medication if she so chooses, because at 18, under our current mental health laws, she becomes a “consumer,” not a patient. Without medication, she could become a dirty bag lady that people will pass on the street with disdain, the woman raving to herself that makes good citizens cross to the other side of the street. She could commit a crime with no awareness that what she is doing is wrong. Right now, she has a tendency to try and strip her clothes off if she feels any wetness. She could be arrested for that. She could be arrested for striking someone trying to help her, as she now sometimes does to us or her school staff or her behaviorists. Things that she does now that are not crimes yet will become crimes. Perhaps she will wind up in the California Department of Corrections, the largest provider of mental health services in the world.

With no medication to check the advance of the schizophrenia, there is no telling where what is left of her mind could lead her to do.

I am not asking for society to take responsibility for my child. What I am asking for the ability to continue to take care of Jani after she turns 18. Right now, I cannot legally help my child, no matter how much I may want to. I need your help, Mr. President, to change that.

There is a law that was passed here in California and signed by former Governor Gray Davis. It is called “Laura’s Law.” It allows for what is called “assisted outpatient therapy,” which is a fancy name for forced medication. If adults over the age of 18 with a diagnosed severe mental illness like schizophrenia or bipolar will not comply with their doctor’s orders to take medication, they can be legally forced to. It was named after Laura Wilcox, a 19 year old college sophomore who was volunteering at the Nevada County (California) Mental Health Clinic during her winter break from school. On January 10th, 2001, Laura Wilcox was shot to death inside the clinic by Scott Harlan Thorpe, a diagnosed schizophrenic.

Unfortunately, the bill left the decision of whether to implement Laura’s Law (based on New York State’s similar “Kendra’s Law”) to the individual counties. To date, only Nevada County has implemented it. Los Angeles County, where we reside, has fought off lawsuits brought by civil rights groups enough to implement a pilot program. All attempts by other counties to implement Laura’s Law have been stymied by litigation claiming the law violates the civil rights of the mentally ill.

Mr. President, when Jani was only two, long before she presented symptoms of her future illness, I went to see my doctor about what I thought was the flu. It turned out I had pneumonia. I was hospitalized. As part of the protocol for pneumonia, I was administered a test for tuberculosis. The initial skin test came back positive. I was moved into an isolation room. I could not see my wife and daughter without a mask and gloves. My pneumonia improved under antibiotics but only then did I discover that I could not leave. I could not leave until the secondary tuberculosis test came back negative. I was shocked and angry. I wanted to go home. My wife and my daughter needed me. But I was a prisoner by order of the State of California’s Department of Health. Until it could be confirmed that I did not in fact have tuberculosis, I could not leave because if I did I was a threat to public health.

Why is it that tuberculosis is considered a threat to public health but severe mental illness is not? Why will Jani be given a choice to destroy what she accomplished and risk herself and those around her at the age of 18? If a person has tuberculosis, we do not let them refuse treatment and return to society. We treat them, not only because of the potential danger to us but also because we consider it our moral imperative to treat the sick. Those with severe mental illness are sick, Mr. President. It is our moral imperative to treat them.

If I have my way, my daughter will have a happy and fulfilling adulthood. But that can only happen with legislative help. I am asking you, Senator Feinstein, Senator Boxer, and Representative McKeon to pass the following legislative changes that I believe if were in place now, the 26 victims of Adam Lanza would still be alive:

Introduce, pass, and sign into law federal regulations making Laura’s Law/Kendra’s Law mandatory in all 50 US states. This allows parents like myself to continue to have input regarding our children’s mental health treatment, avoiding tragedies like Newtown by making it easier to get our adult children into inpatient psychiatric care
Amend the Affordable Care Act of 2010 to include mental health parity, eliminating annual and lifetime limits on mental health care, specifically inpatient care. Right now, inpatient psychiatrists spend more time on the phone to insurance companies trying to justify the need for further inpatient care than focusing on patients. Due to the elimination of state psychiatric facilities in most states, there is no care system for the chronically mentally ill. Requiring private insurers and Medicaid to treat mental illness as they do physical illness would save untold sums in incarceration. Prisons are currently the only providers for chronic mental health. In California, over 60% of the prison population has a diagnosable mental illness.

Use incentives like student loan forgiveness to encourage more medical students to go into psychiatry. We have a severe shortage, even in major urban areas like Los Angeles.

Pass legislation mandating the Department of Health and Human Services and the Department of Education to develop a program for mental health screenings of public school students, conducted by a team of board certified child psychiatrists. Current law requires visual and auditory screening. Mental illness has a far larger impact on learning ability than a need for glasses or a hearing aide. This would allow us to identify and treat mental illness before it progresses to the point of potential violence.

Pass a budget bill allocating funds to states explicitly for the purpose of building more and better acute inpatient psychiatric facilities. Under current law, when you present to the emergency room with psychotic symptoms, if there are no beds available, you will be turned away. There is a severe shortage of psychiatric hospital beds for both adults and minors. The biggest obstacle to mental health care is not lack of insurance but a lack of facilities.

Call for Congressional Hearings to learn about severe mental illness. Let parents like us come to Washington and share our experiences. Meet our children (for those of us who still have children under the age of 18). Involve parents like us, parents who can tell you everything that is wrong with the system, what we went through, and how we are trying to protect our kids. Do not subpoena just the “experts” because they haven’t lived it. You are not an expert on mental health until you have watched it destroy your child. And do not turn to national “advocacy” groups like the National Alliance on Mental Illness because they willfully ignore the potential for violence with mental illness for fear of “stigma.” We are not concerned with stigma. We are trying to save lives. The unwillingness to face the possibility of violence leads the mainstream mental health advocacy groups to ignore our children, who suffer from the worst of the worst mental illnesses. There is no national organization that speaks for us.

You have heard only too clearly from Adam Lanza, James Holmes, Jared Loughner, and Seung-Hui Cho but it is too late for them now. When you look at them, all you can see is a killer who took innocent life. You will never get the chance to see who they were before the day they picked up a gun.

But it is not too late for Jani. You can still meet her and see who she is now. And if you give me the chance, I can introduce you to thousands of other children who are not yet the visage of a nightmare, staring blankly back from a mugshot.

Please, Mr. President, Senator Feinstein, Senator Boxer, and Representative McKeon. Help me save my child.

And everyone else’s.

Sincerely,

Michael John Schofield
Father of January Schofield
Author January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her

CC:
Senator Diane Feinstein (U.S. Senate-California)
Senator Barbara Boxer (U.S. Senate-California)
Representative Howard “Buck” McKeon (25th District-California)

Note: If you are a parent of a child with severe mental illness, I encourage you to use to this letter as a template, changing it to include your child and your child's symptoms, then mail to the White House at the address above. The White House and your members of Congress need to see your letters and emails. They need to see the magnitude of the problem that led to the tragedy at Newtown, CT. You can submit emails to President Obama here: http://www.whitehouse.gov/contact/submit-questions-and-comments. You can also call the White House at 212-456-1111.

You can find and contact your US Senators here: http://www.senate.gov/ and your member of the US House of Representatives here: http://www.house.gov/

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Link to Michael’s Blog:

Jani on Born Schizophrenic:

Tuesday, December 25, 2012

Merry Christmas and Bah Humbug!

Overall, today was a great Christmas day. The boys were so excited for Santa that they began waking us up around 4 am. We made them wait until 7 am, but I don’t think anyone got much sleep.

With so little sleep we were expecting a meltdown somewhere along the way, and our youngest son didn’t disappoint. This afternoon at Grandma’s house, surrounded by a room of onlooking family, my youngest son started to scream when he found out he got clothes in one of his gifts. The clothes were awesome and just what he needed, but his expectations were of something else and more than anything he was done for the day. Too much fun, not enough sleep, a different schedule, different foods, crowds of people—all of it was a recipe for disaster for his little brain.

So there he was, yelling over the family, “This is the worst gift ever!”. I wish it stopped there, but it didn’t, he had to be carried to the back room to decompress only to later run into the bathroom where my aunt was doing her business. I heard her scream from down the hall after I was too late in stopping him from barging in on her. It was then when we surrendered and called it a day.

On the drive home, I had to push away feelings of embarrassment. My family was so generous with my son—it was mortifying to see him throw such a fit. I also can’t help but feel like everyone is judging me for being a bad parent. This is exactly how Thanksgiving ended with my in-laws, me taking my youngest to the back room as he screamed, “I hate you!”

As much as I know I need to be prepared for these meltdowns when our life gets off schedule, it still makes me wish I could avoid it all together. But as my husband pointed out, to do so would require never leaving the house and that doesn’t always make for a very merry Christmas.

In the end, I have to keep in mind that as hard as this is for me, it’s 100 times harder on my little one.

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Merry Christmas my friends and to all a good night!


Thursday, December 20, 2012

Dispelling Misconceptions of Asperger’s Disorder

View more videos at: http://nbcbayarea.com.

I saw this video on NBC Bay Area Website, I really appreciated this father, who himself has Aspergers, stand up for his daughter who also has it. After the shootings, the Asperger community has faced a lot of negativity because people don’t understand the disorder and assume that it means a person is dangerous. It’s taken a long time for this community to gain acceptance, so this turnaround is very disappointing. I’m glad to see individuals standing up to dispel these misconceptions.

It’s interesting that after the DSM guide has removed Aspergers from the diagnostic guide that this disorder is now in the forefront of the news. I wonder what impact this will have in the long run?

Link to video:
http://www.nbcbayarea.com/news/local/Bay-Area-Man-With-Aspergers-Speaks-Out-184191731.html

Tuesday, December 18, 2012

More Scared than Ever...

Over the last few days I’ve read or listened to some very disturbing conversations regarding our children. It honestly feels like our family is wearing a scarlet letter. People believe that all evil comes from our families and if society would just remove our children, the world would be a safer place. More than once, I’ve listened to reasoning from individuals that claim the solution to all mass shootings is to have a registry for all people with “labels” or those taking medication so the government can monitor them. To be honest, this type of thinking was starting to feel like Nazi Germany.

Here’s an example of what I encountered many times yesterday:

Cindi says: “Flipping radio stations this morning, I came across a conversation that has me unsettled to say the least. (It was a national call in show.) The host was ranting that “all special needs people, children and adults, need to be segregated in their own facilities. We don’t want those people mixing with our normal kids. They should all be locked up where they can’t hurt anyone, since we never know... when they are going to go off their meds and snap. We don’t want special needs kids in school with our kids. They should have their own place, where we don’t have to worry about what they might do.” He went on to suggest a registry of people (again, adults and children) on any kind of medication, “so that they can be monitored.” And the worst part was, all the people calling in were agreeing with him!! I think I’m almost more scared than I was on Friday. Do we need to talk about guns? Yup. But we need to also talk about the state of mental health care and the surrounding issues. Too many morons out there that think like this are creating a culture of fear toward our kids. And they have enough challenges...”
So how are we as families suppose to take this? This woman shares how she felt more scared after hearing this show than she was on Friday. I could relate to that. This kind of thinking terrifies me.

I also think it’s complete nonsense. The reality is that those with “labels” who are taking medication or undergoing therapy are safer than your own neighbor who has an “anger problem” but refuses to seek help. Labels and medications are one of many steps towards a safer society. This overgeneralization will only lead to more stigma which will cause those with mental illnesses to avoid treatment for fear of getting the “label”. As a result, we will in essence produce more unstable people.

But in the face of fear, in the desperate need to get a hold of what we can not understand, it’s easier to criminalize a whole population of people, who by the way are more likely to become a victim than to hurt others, than to look at the real problems such as our failing mental health system.

Yesterday I was contacted by a CBS affiliate radio station to speak on behalf of families who’ve felt scared of their own children. I was assured that I could remain anonymous and that the interview would be “delicate and sensitive”. I was seriously conflicted about whether or not I wanted to participate in such a public discussion, especially with the “pitch forks” of society pointing at us. On one side, I wanted to fight against the stigma that already exists for our kids and bring compassion to our families. I feel strongly that if we don’t speak up, we’ll never make a positive change. But on the other side, I was terrified of the negative backlash that would follow for my family, particularly my children if my anonymity was unveiled. As I sat nervously listening to the live broadcast, trying to make my decision about joining in, I started to hear the conversation turn heated and hateful. It was all I needed to hear before walking away.

You may be scared of my “labeled” child, but honestly, you scare the crap out of me.





Sunday, December 16, 2012

Heartbroken and Speechless...

Like many of you, I’m feeling the weight of the school shootings that happened last week. I feel so many things. Sadness, fear, anger and the list goes on. Around me I’m hearing a lot of discussion about mental illness, about what should’ve been done, about the failures of the parents and society as a whole.

Like most parents, I’m concerned for my children’s safety at school. It seems unreal that we live in a world where our children have school drills for such events and they actually happen. But unlike other parents, I’m feeling anxious about the fallout. Will others be scared of my son after such a tragic incident. I know I’m not the only one feeling this. I’ve heard of others who now feel concerned because they’ve disclosed their mental illness to others. “What will they think of me now? Will they have compassion, or am I the enemy?”

Today I read many comments from mothers with special needs kids sharing their concerns for their own children, they express worry, “could my own son/daughter do this?” I feel their pain in their questions, in their fears, I understand the guilt they feel for even thinking such thoughts. It makes me wonder, did the shooter’s mother ever consider this, was she scared of her own son?

Today there was a post that’s gone viral on Facebook (Thank you Molly for sharing). It’s from a mother who was brave enough to expose her life and her son. It was tough for me to read because I can relate and because I’m so frustrated with our current mental health system. I can only hope that this mother will be able to stand strong against her critics and in the end, her honesty will bring about positive change.

Here is her post:

I am Adam Lanza’s mother
http://anarchistsoccermom.blogspot.com/2012/12/thinking-unthinkable.html

As for the families suffering tonight, I’m heartbroken and speechless. There are no words to mend these wounds.






Tuesday, December 11, 2012

School Psychologist Evaluation

I just met with the school psychologist for my youngest son, I found her classroom observations to be, well... so my son.

Here are a few of her notes:

He is an active student, sitting in his chair inappropriately, alternating between sitting and standing at his desk.

He would get off task, doing his own activities before joining in on the assignment. 

He would leave the class group without permission to do his own thing.

He did not look up at peers or engage in eye contact or direct his communication with any particular individual.

He would talk to himself and occasionally laugh.

He would not engage in a “social smile” when the psychologist tried to engage him.

He was observed to hum or sing quietly to himself.

He would sometimes speak in a made up language.

He annoyed a peer by covering their face with his paper, he did not pick up on the social cue that he was annoying them.

He had one shoe off for half of the observation. (this made me laugh—this is SO my son!)

Well one thing is for certain, the Prozac is working so far. Overall he has become more happy and isn’t putting himself down anymore. He also said that the voices “died”. Instead of slouching and tearing up stuff, he is doing headstands on the couch and acting silly. Even his teacher has noticed that he is not as frustrated and isn’t throwing books in her class. The school psychologist noted that he appears to be a happy boy.

Our concern is for his future, when others may not think of his quirks as being “cute”. In the meantime, I can live with a happy and silly boy, even one that speaks in his own language.

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Based on this evaluation, the school has agreed to have him evaluated by a speech pathologist and have his handwriting skills looked at.

Monday, December 10, 2012

Autism, Bipolar Disorder and Neurofibromatosis... Is There a Connection?

Tomorrow I meet with the principal and school psychologist for my youngest son to begin the process of helping him while we wait for his Aspergers assessment with our HMO. In preparation of the meeting, I got a call last week from the school psychologist who’s been evaluating my youngest son in class. She did take notice of his unusual way of speaking, she said, “He tends to blurt out information to no one in particular and doesn’t give eye contact to the classmates around him.” As she asked more questions about him I explained that he has an older brother with a mood disorder. She paused for a moment and said, “You know... I’m not an autism specialist, but I can share from my own experience that it isn’t uncommon when I see a child on the autism spectrum to see another family member not so far down the family tree with a mood disorder, such as bipolar disorder. It’s like it’s the same gene, just a different mutation of it appearing in another family member.”

I found this to be intriguing. I happen to know another family who has a son with Autism and a close relative with bipolar disorder. I have also heard from a follower with a similar situation. It makes me wonder how connected these disorders are.

Another piece of interesting information I came across is that children with Aspergers tend to have more unusual medical conditions than the average child. According to The Asperger’s Answer Book by Susan Ashley, Ph.D., 12-37% of children with Aspergers may have one of the following:

• Chromosomal Abnormalities
• Thyroid Disorder
• Neurological Disorders
• Tuberous Sclerosis (Tumerlike growths on the brain)
• Neurofibromatosis (Soft tumors all over the body)

The last one on the list made my eyes pop out! Neurofibromatosis... That’s the exact same condition my son was screened for last month! The screening was done because he showed one of the markers with cafe-au-lait spots found on his body at an annual physical. The second round of screening showed that his eyes were free of tumors and we were told that they would keep an eye on him in the coming years to see if it would develop. At the time, I felt we were done with that forever, but now seeing it on this list made me feel a little uneasy.

With all that said, we’re taking it one day at a time. My son will begin his assessments for Aspergers Disorder right after Christmas. We were fortunate to get in with a highly regarded team, as I was told, “they are the best in the area!” I don’t know what to expect with Aspergers Disorder being dropped from the DSM guide, will my little one walk away with a diagnosis of autism, or will he fall outside the spectrum? It will be interesting to see how this all plays out.



Friday, December 7, 2012

Glenn Close is Honored for her Fight Against Mental Illness Stigma


Visit NBCNews.com for breaking news, world news, and news about the economy

Glenn Close appeared on the Today show after being honored for her work in fighting the stigma associated with mental illness. As she shared, 1 in 4 people are affected by mental illness. Her own sister has Bipolar Disorder and her nephew has Shizoaffective Disorder, so she too has personally dealt with it. Way to go Glenn Close, thanks for making a difference for our families!

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Here’s the link if you can’t view the video above:

Tuesday, December 4, 2012

A Valid Argument for Adolescent Bipolar Disorder Being a Real Diagnosis

There’s a lot of buzz about the new disorder DMDD (Disruptive Mood Dysregulation Disorder) being added to the DMS guide next year with hopes of reducing the number of children misdiagnosed with bipolar disorder. In some cases, such as Dr. Kaplan, he’s “Driving a Stake in The Heart of The Beast of The Misdiagnosis of Pediatric Bipolar Disorder” holding strong to his belief that bipolar disorder doesn’t even occur in children. Though there are many parents that would argue against this. What I came across today is an article by Dr. Nassir Ghaemi published in Psychology Today arguing against these “bipolar skeptics”, claiming that bipolar disorder can begin in childhood. I found his argument to be pretty compelling.

He asked the question “Does depression occurs in children” and if so, points out that depression often precedes manic or hypomanic episodes, and since 25-50% of children who have depression in childhood grow up to have full blown manic or hypomanic episodes, isn’t it then reasonable to believe that they had bipolar disorder all along?

He states:
Does it mean that they have “major depressive disorder” until age 20, at which point their disease magically changes to something completely different: bipolar disorder? Or is it rather the case that they have bipolar disorder from the very start, with the first episodes of their mood illness being depressive episodes, and manic episodes beginning later? This is a course of bipolar illness, depression preceding mania, that has been described for over a century. (Dr. Nassir Ghaemi Psychology Today)

You should read his entire article, it’s not that long, but very interesting.

Check it out:
Depression in Children: Proof of Bipolar Disorder
http://www.psychologytoday.com/blog/mood-swings/201211/depression-in-children-proof-bipolar-disorder

Dr. Ghaemi’s First Article in a Series:
Childhood Bipolar Disorder: Erasing Myths
http://www.psychologytoday.com/blog/mood-swings/201211/childhood-bipolar-disorder-erasing-myths




Sunday, December 2, 2012

I Miss Dating My Husband

Tonight I went to the movies alone to see a movie I was looking forward to seeing. It’s no big deal that I went alone, I do that off and on when the kids are in school, but going at night, surrounded by all the couples on dates left me feeling pretty sad. Raising kids with challenges makes it almost impossible to go on dates. We don’t want to leave our kids alone with a teen to babysit because it may not be safe for everyone and we hate to burden our family by asking them to watch the kids. So as a result, my husband and I only date a few times a year. It seems to be less every year.

As the movie ended, I watched all the couples head off, while I went to my car to cry. I miss having fun with my husband. I miss dating him and having our alone time away from the house and kids. Because of our kids’ challenges, we tend to tag team our fun. My husband gets to play poker with his friends while I stay home with the kids and I go out to dinner with my friends while he stays home. For the most part this works pretty well, giving both of us a much needed break. But for our marriage, it doesn’t help us enjoy life together. Instead, I feel like our happiest times happen apart. Not that it has anything to do with each other, just the reality of our circumstances. When we’re together, we’re putting out fires with our kids and trying to keep the peace. We’re basically surviving. There’s a whole lot of stress and work and very little fun.

Tonight this makes me very sad. Can you relate?


Thursday, November 29, 2012

Party Time!

Tomorrow my oldest son is attending an ice cream party at the middle school for earning good grades this trimester. He earned 4–As and 2–B+s, sorry I had to brag because he worked so hard for this! I also have to give credit to his study skills teacher, even my son has admitted that his success wasn’t possible without her. One teacher really can make all the difference.

Over the semester she has adjusted her teaching style to his learning style, she has cleverly figured out how to motivate and encourage him, from experience I can share this isn’t an easy thing to master. I also find her to be extremely committed. One night I sent her an email at 11:00 pm and within 5 minutes, she called my cell phone to discuss the situation and come up with a plan to put into action, she talked with me for 45 minutes that night!

Honestly, my husband and I were prepared that my son would not be able to get through this school year, but things have turned out better than we ever imagined! With the exception of the bullies, which is still a great concern, our son has managed to cope with so many stressors and challenging experiences. I am in awe of his incredible courage and resilience. He is one tough, smart cookie!

Tuesday, November 27, 2012

Bully Caught on Camera!

My oldest son is still being bullied at school by older kids. He’s been punched in the stomach, slapped in the face, hit on the back, even pinched by older girls that called him “gay” as he passed them in the hall. What’s strange is that it’s been completely random, each from different kids, all of them unknown. They’re just the older kids on campus messing with the younger, more vulnerable kids.

Yesterday, while waiting for me to pick him up at the front of the school an older boy grabbed his backpack and walked off with it. When my son was alerted to this by a friend, he chased the kid down to get it back. As he approached the kid the kid swung the backpack, hitting him in the face multiple times. My son began twisting the backpack, until he got it back. But the harassment didn’t end there, because the kid then grabbed some rocks and began throwing them at my son. How do I know this? Because I saw it all on video thanks to a surveillance camera filming over the location.

Thankfully we were able to have the principal pull up the video in his office and they were able to identify the bully, who later faced the consequences.

I was so proud of my son on how he handled the situation, he tried to defend himself, but avoided hitting back. On the other side, I was so angry to see him being messed with on camera, my mama bear claws were coming out!

The downside to all of this was the anxiety that occurred the next morning in his first period, after the official meeting with school staff to identify the student. My son’s hearing started to change, for about an hour all sounds became very amplified and the voices of those around him became threatening. He could tell that what he was experiencing wasn’t real, but it was frightening none the less.

As my son told me tonight, I wish there were some things about middle school that I could make disappear.

So do I son, so do I...

Thursday, November 22, 2012

Happy Thanksgiving

I just wanted to wish you all a happy Thanksgiving and thank you for being a part of my life. I know that I’ve never met you or even know most of your names, but you’ve been an incredible support system for me in so many ways. Whether it’s your supportive comments or suggestions left on my blog or the many private emails I receive from those of you who have shared your own stories and continue to cheer me on. I feel blessed to have this online community to remind me that there is hope when things are tough and to know that I am not alone. It really does make a difference.

Love,
Mama Bear

Tuesday, November 20, 2012

Starting Prozac

We started my youngest son on a low dose of Prozac 4 days ago. So far, so good. Though I find myself praying for him throughout the day. I absolutely hate starting medications, but I’m hopeful this will help with my son’s depression and anxieties.

My husband and I are still absorbing the probability that our “little one” has Aspergers. The more I read about it, the more I realize he must have it. It turns out, most of my family suspected it for years.

We both are dealing with feelings of sadness over facing another diagnosis and watching another child struggle throughout his life. I just want to cry.

I find myself dreading having to learn about another condition. Just the thought of starting all over again with a new syndrome feels overwhelming. I feel resentful about having to read more books, research more therapies and establish more education plans with the school. Though I know that once it’s confirmed, these are the things I will do without question.

On a bitter-sweet note, if my son does have Aspergers, we’ve been assured that there will be a world of services opened up to him. In addition, it’s a condition that people seem to accept and aren’t afraid of. People will want to help my son and will embrace his challenges. It’s something that he won’t have to hide. Unfortunately for my oldest, kids with bipolar disorder don’t have access to this kind of help or compassion.

... and this makes me mad.




Sunday, November 18, 2012

Lord Help Us...


During church this morning my husband and I watched our youngest son draw portraits of each member of our family. He did a side-by-side with one image in present time and the next image 10 years later. What started out cute, turned into something very disturbing. Check out the drawings below:



This is my little one’s self portrait, 10 years later he’s the Sheriff.



My middle son 10 years later. A little rugged and appears to have outgrown his clothes.




Here I am 10 years later, I’ve lost an eye along the way and use a cane.
(plus put on a few pounds)



Here is my oldest son who ended up in prison. 
The shirt was suppose to say “Dork” but he misspelled it.



And unfortunately here is my husband, buried in a coffin. It says, “R.I.P The Good Man”. He drew a worm in the dirt with the words “HI!” in a speech bubble.


Lord help us these next 10 years!
(We only hope our son isn’t a fortune-teller.)




Thursday, November 15, 2012

Grieving Over Another Diagnosis...

We got some discouraging news this week when we took our youngest son for an evaluation with our psychiatrist. It wasn’t what I expected, but looking back, it’s all starting to make sense.

When we arrived at the psychiatrist office, my little one climbed into the big leather couch with his feet dangling off the side, not even reaching the floor. The doctor first addressed him asking, “Do you know why you’re here?”

My son straightened himself up and in a matter of fact tone said, “Yeah, I hear voices in my head.”

From there our psychiatrist ask about a dozen questions about the voices, here are a few of them:

 “Do you hear more than one voice?”

“Yeah, I hear a lot of them. They’re kids’ voices and strangers”

“Are they in your head or in the room?”

“In my head.”

“Do they talk to each other, or just to you?”

“Just to me.”

Do they sound like your mom or dad or your brothers?”

“No, I already told you, strangers!”

“What do they say?”

“They call me bad names like idiot, stupid and tell me I’m a horrible person.”

“What else do they say?

“They laugh at me a lot.”

“They tell me to do bad stuff and if I don’t do it they’ll give me a migraine.”

From there the psychiatrist gave me a curious look and said, “Does he ever get headaches?” I answered, “Yes, more recently, in fact about a week ago he had his first migraine and even threw up with it.” With a look of concern he replied, “Keep an eye on that and let me know if that continues.”

Turning back to my son he asked, “Do the voices ever tell you to hurt yourself?”

My son hesitated for a long moment, looking down and avoiding our eyes.  Then he softly said, “no... well I mean, yes.”

“What do the voices tell you to do?”

“They tell me to kick myself or to punch myself in the stomach.”

“Have you ever done that?”

“No, I know that’s wrong.”

“That’s great, don’t ever listen to that.”

After all the questions and reviewing the list of behaviors we’ve witnessed over the years, along with looking at his drawings of slaughtered dead people (with blood and numbered bodies) he turned to me and said that he’s clearly depressed. He believes the voices are possibly due to psychosis brought on from depression. If it isn’t psychosis, then it’s intrusive thoughts which are also bad and related to depression. He said that it’s clear that he’s struggling and we can’t continue with this so we need to start him on an anti-depressant, Prozac.

I felt a punch in my stomach.

Still dizzy from what I just heard, he then said, “Looking at the list of behaviors you’ve brought me, have you ever considered that he may have Aspergers?”

This felt like it came out of left field, but I had to admit, it recently crossed my mind. About a month ago when I was looking into my son’s vocal tic, Palilalia, I saw along with anxiety, autism was also associated with it. It made me ponder as I thought about the way my son never wants to play with other kids, but instead is happiest when he’s alone.

Plus there’s all the sensory issues that seem to be taking over his life, his extreme reaction to change in routine, even going out to pizza this week brought on anxiety because, “we’re suppose to go home after school, not pizza!” He’s overly obsessed with time and is extremely picky about foods.

There are moments were he goes into fits of anxiety over batteries dying, and showing him a bucket of fresh batteries doesn’t quelch this fear. A few months ago he was hiding under a clothing rack in a Old Navy store in a fit of panic because he saw some balloons and said, “The balloons have a spell on me!”

He seems to hate toys and never wants to sit with the group of kids during story time. He runs out of his classroom and lunch room because it’s too loud and this summer he ran away from a birthday party because it had too many kids.

We’ve seen anxiety over throwing trash away, how his sheets are tucked in or how his clothes are packed in a suitcase. Things like haircuts, shoes getting wet or teeth falling out have produced outrageous moments of panic.

Recently he told me that he sits alone at lunch. When I asked him if he ever wants to sit with friends he said, “I don’t have any friends.” When I asked if he preferred it that way, he nonchalantly said, “Yeah!” and wandered off like we were talking about nothing special.

This summer I found that it’s almost impossible to get a photograph of him since he seemed wary of our camera at times. Then there’s the varying moods, he definitely wakes up in bad moods and on other days he’s clearly happy, but in no time at all, he complains that it’s the worst day ever. He cries almost everyday about not wanting to go to school and homework time is painful.

He has on occasion shown destructive behavior when upset that I always felt was different from the energy his brother gave during a rage. It felt like he was mimicking what his brother did and unlike his brother, I was able to calm him down. Also, his brother’s rages always felt like someone out to get you, like a wild animal, where our youngest son just looks frustrated and overwhelmed.

We watched over the years our “playful boy” that liked to dance to music like he owned the dance floor, turn into the kid who runs and hides under the couch pillows when the music starts, refusing to participate.

And what really hurts, is seeing how he’s pushing my husband away. He just doesn’t connect or respond to hugs and playfulness as much. My husband says, “I don’t even know my son anymore.” And my son’s favorite time of the week is when his brothers leave for youth group so he can have his “alone time.”

As I look at my youngest son with a new lens of Aspergers, the list continues to grow. I can see now how this is possible.

I have to admit that my heart has been very heavy. It feels like I’m losing another child into a world I want no part of.

It’s not because he may have Aspergers, if anything that diagnosis would explain a lot. But it’s because I’m being told that this isn’t a phase. All along we have been told that our son may have PTSD because of his exposure to his brother’s rages. But this depression, this Aspergers, it’s not a phase. It’s another long journey I don’t want to take.

The thought of putting another child on medication, an SSRI on top of that makes me sick. What if it triggers a bipolar illness? What if it makes him suicidal? Our psychiatrist reassured us that we would take him off if we saw any bad side effects, but what if we ring a bell that can’t be unrung?

My heart is aching...

But as I was tucking my little one into bed last night, he was crying, saying, I’m so sad...

He told me the voices keep bothering him and he wants them to go away.

How can I ignore that.




Tuesday, November 13, 2012

Interview with Sam about “Voices”

In a previous post I shared how my youngest was hearing voices now. As a follow up I wanted to post a response I got from Sam, a follower who shared their experience with hearing voices—you might find Sam’s tips very helpful.

***

Sam: I have these kinds of voices as part of anorexia, a disorder underpinned by anxiety. It is hell. These voices are not uncommon in anxiety disorders and depression, they are just not often talked about by sufferers, probably due to the connotation that it is related to psychosis and therefore makes you a “bad” person (when of course it doesn’t, even if it were psychosis).

There are fundamental differences between these sorts of voices and auditory hallucinations. For starters, people with anxiety will experience the voices inside their brain, whereas people with psychosis will experience the voices as being outside their head even if they know they aren’t real. With anxiety, the voices are not audible; with auditory hallucinations you really can hear them just as you can hear someone talking to you. The type of voices that people with anxiety and similar conditions experience is often misdiagnosed as psychosis; it takes a trained eye to ask the right questions and see the difference.

It is great that your son opened up to you about this, as he can now learn how to cope with and fight the voices. And if it does turn out to be bipolar-related hallucinations, then you have caught it early and are experienced and well-equipped having helped your eldest.

Mama Bear: Did you ever feel scared by these voices?

Sam: I am scared by what the voices can compell me to do because such actions hurt my loved ones and could kill me. More than anything though, I find them distressing, much like how it would be distressing to have someone hurling abuse at you 24/7, threatening and taunting you, screaming at you to do this, do that, don’t do this or that.

I can understand why they would be particularly scary to a child, especially if it has come on relatively suddenly.

A caveat: sometimes the voices aren’t scary at all, sometimes they try to convince me that they are my best friends, acting in my best interest, that I will feel a whole lot better if I do what they say. And I DO feel better if I do what they say, but this feeling is only temporary. When I was younger the voices were not at all scary or distressing because I just did what I was told and had no insight as to the nature of what was gonig on.

Mama Bear: Do they feel like your own thoughts or do they sound to you to be different people in your head?

Sam: They don’t feel like my own thoughts, or really like thoughts at all to be honest. It feels foreign/alien. I consider it to be my illness(es) talking.

Mama Bear: Are they brought on when you feel a surge of anxiety, but quiet when you are feeling good?

Sam: Oh, most definitely! It should be noted, though, that they further aggravate any anxiety/distress that I have to begin with, so it can be a vicious cycle.

This is actually one of the reasons why I know equivocably that the voices are not ME. They are significantly muted when I am well.

Mama Bear: What can you do to live with them?

Sam: I have found a number of things helpful:

- Dialectical Behavioural Therapy (DBT). This is used most often in people with Borderline Personality Disorder and/or who self-harm, but it teaches a number of skills which are excellent for improving distress tolerance. I think it would be too complex for a child, and I don’t know of anyone adapting it for children, but a therapist or psychologist with training in DBT could certainly teach some age-appropriate principles and skills. You might find this website useful: http://www.dbtselfhelp.com/ particularly DBT Lessons -> Distress Tolerance.

- Cognitive Behavioural Therapy (CBT). This is an evidence-based therapy for anxiety disorders. It has been adapted for children but you would need to find someone with specific training. CBT has helped strengthen my own “healthy voice”.

- Distraction techniques. When it is particularly “noisy” in my head listening to music or having a television playing in the background helps give me something else on which to focus. I find this is particularly important at night time, when the voices tend to be at their worst (probably because there are less distractions at night time!). Sometimes music/tv isn’t enough and I have to distraction further by doing something else with my hands/brain such as playing a game on my iphone. If I am really anxious and do not have something to do with my hands, I have a tendency to sub-consciously start hurting myself and will not realise until someone points it out to me. Talking to someone also helps distract me from the voices. Sometimes I may not be able to engage in conversation, but hearing someone talk still helps. I find it most helpful when the person talking is calm and talkes about something else. Of course, there is a time and place to talk about these things but that time is generally not when I'm in a state of severe distress!

- Many people benefit from guided meditation or other forms of meditation. I personally find these things aggravating as it ends up just being me and the voices duking it out in my head. I do find pilates helpful though, because while it is relaxing there’s still enough for me to concentrate on.

- High intensity cardiovascular exercise. You know how anxiety creates a surge of adrenaline and cortisol? It is basically the body prepping you to fight a battle which doesn’t necessary exist, like a bear chasing you or whatever. Exercise is a good way to release these stress hormones, but it must be suitably intense. This is more for the anxiety than the voices but since they play into each other, it is worth noting.

(NB, in the unlikely event that a parent with an AN child is reading this, please note that I am not allowed to exercise unless I am at a healthy-enough weight to do so and am eating enough to account for the energy expenditure. DO NOT permit exercise otherwise!).

- Doing the Opposite. I do the exact opposite of what the voices tell me to do. Doing the Opposite makes one’s anxiety shoot through the roof in the short term but it helps over time. It takes a lot of practice.

Mama Bear: Did you ever feel like something bad would happen if you didn’t follow through with the voices’ commands?

Sam: Oh yes. I would become fat, I would be greedy, a sloth, disgusting, repulsive, lazy. I would be a failure, amount to nothing, and let everyone including myself down. To avoid these outcomes I had/have to do whatever the voices say.

This probably sounds very similar to OCD, but when I’ve had OCD episodes they are very much intrusive thoughts, not intrusive voices.

Mama Bear: Do you remember how old you were when it started?

Sam: I don’t know when it started. I became more aware of them when they became particularly vicious during treatment for anorexia. However, I am certain that they were there while the anorexia was developing, but that they were silenced by doing what I was told, so I was not bothered by them.

It is possible that they were there earlier. Looking back, I had sub-clinical depression and anxiety when I was a mere four year old, along with what I would call proto-anorexic thoughts and behaviours (scary!).

Mama Bear: Thanks so much for giving this insight, it’s really helpful for understanding my little one!

Sam: It is a pleasure. I do not often respond to blog posts but I thought in this instance I might have something to offer.

I do not believe that parents can prevent their children developing mental illnesses, particularly those which strong biological links (bipolar disorder, anorexia nervosa, some forms of anxiety and depression). You should NEVER blame yourselves! There are, however, so many things you can do to help your child cope and whip their illness into submission. Your sons are so blessed to have you guiding and advocating for them.

Ooh, I just realised that I left off a vital component of my “what helps me cope with the voices” list: my superhero dog, Malcolm! When I am particularly distressed he will insist upon climbing onto my chest and he will refuse to move until I have calmed down. There is something about the weight of his body laying on me which is particularly beneficial. I have since learnt that this is one of the skills they teach to psychiatric and autism service dogs. He has no such training!

Mama Bear: Thank you once again Sam for sharing with us and give Malcom a hug for us! I remembered your advice the other night about your dog’s body weight calming you down, so when my youngest couldn’t calm down at bedtime I climbed on top of him (we don’t have a dog so I had to make do) and gave him a heavy hug, letting my body weight rest on him. It worked! He calmed down and went to sleep. I will admit though, a dog would be much more fun under these circumstances!


Sunday, November 11, 2012

A Message from Columbine

On Friday I posted a video clip about a new book that has the parents of Dylan Klebold speaking out. I shared that I felt compassion for the parents of children who commit these violent crimes and wished we as a society weren’t so quick to blame them. I know the topic is heated for many and there may be many more who disagree with me. But I wanted to share with you a comment left by a follower who was closer to the situation than the rest of us. I feel her words are very profound and worth reading.
As a family member of a victim of the Columbine shootings, my heart breaks for the parents of Eric and Dylan. My heart also breaks for the parents of the Aurora shooter, the parents of Jared Loughner (shooter of Gabby Giffords, etc) and the countless others who watched their children self destruct before their very eyes. To have no sympathy for those parents is to have absolutely no idea what it means to be mentally ill. And that is what this blog is all about. Those shooters were wrong. What they did was horrible. But as a society we need to do a better job of accepting that the mentally ill are all around us. And the severely mentally ill are capable of such acts of violence. Just as you do not get to "choose" not to have cancer, you do not get to "choose" to not be mentally ill. It happens. Brains malfunction. Psychosis sets in. AND IT HAS NOTHING TO DO WITH PARENTING!!!!!!!!!!!!!!
Cathy
Thank you Cathy for having the courage to speak up. I am deeply sorry you and your family have experienced such a tragic loss of one of your own. Your pain is unimaginable, but your compassion is an example to us all. Thank you.

* * *

Since there’s been a discussion about mental illness and violent crimes, I thought it was important to point out that the vast majority of those who are suffering from a mental illness who are not abusing drugs or alcohol and are receiving treatment are statistically no more violent or dangerous than the rest of the population. People with a mental illness are more likely to harm themselves—or to be harmed—than they are to hurt other people. 


Thursday, November 8, 2012

The Shooter’s Parents


Visit NBCNews.com for breaking news, world news, and news about the economy

I saw this interview on the Today show with author Andrew Solomon about his new book, Far from the Tree: Parents, Children and the Search for Identity. His book is about families who have children different than themselves, such examples include autism, deafness, child prodigies and schizophrenia. What’s catching the media’s attention is an interview with Dylan Klebold’s parents, I doubt you’ve forgotten, but Dylan was one of the teen killers in the Columbine massacre that took place in 1999.

The author shares in the interview how he was interested in meeting the parents to see if it explained what had happened and if he could detect what was off in their household. But what he found instead were loving, courageous parents who had no idea this was going to happen and if they had known, they would have done something about it.

This really struck a nerve with me. I know what I’m about to say may upset others, but I feel terribly sad for these parents. And my sadness doesn’t take anything away from all those families who lost their kids in the masssacre, I can’t imagine their pain and wished it never happened. But it feels like society doesn’t allow the parents of these killers to grieve too. I feel like society automatically blames the parents.

I still remember after the movie theatre shooting that took place in Aurora earlier this year when a crowd of news trucks and reporters were outside the home of the killer’s parents. Not knowing a thing about this family or their circumstances, I felt a deep ache for them. I knew everyone wanted to know what kind of parents could create such a “monster”. But I on the other hand was thinking something else... what suffering must those parents be going through. They have lost a child, this is not the child they cuddled and tucked into bed, or the child they watched go on a first date. They must be going through unimaginable hell too, yet society is ready to spit on them and hold them responsible for their child’s violent acts.

I appreciate in the Today interview where Soloman points out that there was a time where many conditions were blamed on the parents. For example, he shares that autism was thought to be caused by a cold mother and schizophrenia was caused by mothers who wished their children didn’t exist but Soloman explains that we have dropped all these ideas except when it comes to crimes, we still blame the parents. He shares that after spending hundreds of hours with these parents he believes they had no clue these acts could happen.

I hope this can be a message to society that we need to stop blaming parents and instead offer support and compassion, just as we do for the victim’s parents.

In this interview, Solomon shares how Klebold’s mother prayed for her son to kill himself in order to stop the killings. He did. And now she has to live with the fact that she prayed for her own son to take his life.

How does a mother do that?

* * *

Today Interview
November 8, 2012
http://today.msnbc.msn.com/id/49596692#.UJyONUKbG4t

Book on Amazon:
http://www.amazon.com/gp/product/0743236718/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B007EDOLJ2&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1K0DKVPXYCNK49GEHVSY



Tuesday, November 6, 2012

Good News for Little One!

This past week my youngest son saw an ophthalmologist to screen for a genetic disease called Neurofibromatosis. After a complete examination of the eyes, they found that he was free of tumors and his optic nerve looked healthy. In a very optimistic tone she said, “I think he’s going to be just fine, we’ll look again in a few years, but looking at him now, he doesn’t look like a ‘NF’ kid.” 

It was such a huge relief, I didn’t spend much time worrying about this, but it feels good none the less to have it ruled out for now. If only it was that easy to screen for mental illness. Maybe someday...

Sunday, November 4, 2012

Becoming an Advocate: The Haunted House Update

After my last post about the haunted house, I dropped in our community director to share my feelings about the haunted house and hopefully bring some awareness.

Honestly, this was a scary step for me. It’s easy for me to be an advocate for mental health behind a computer screen, but to show up in person made me feel vulnerable and exposed. I was also nervous because I was prepared to share a little about our family’s situation, I thought it would be necessary in order to bring awareness and create compassion if she saw an affected family face-to-face. So I swallowed my fears and headed directly to her office.

I first acknowledged all the hard work the staff did to put this event on and let her know that I didn’t intend to diminish their efforts by what I was about to say. She immediately responded with, “I didn’t see you at the event that night.” I said, “Well yes, our family chose not to go because of the Asylum theme.” I explained that we have a child with a mental illness and found the premise to be offense and didn’t want to expose our children to it.

I then explained how the individual scenes were images of real symptoms for those suffering with mental illness and portraying them at a family event is not only offensive but hurtful—pointing out that they would never have done a cancer ward theme. I shared how families like mine are affected by the stigma of mental illness and how my son has lost two of his best friends because the parents were scared of his illness. I told her that this event only feeds into those fears and strengthens the stigma that we’re trying to fight.

She was very good at listening, only stopping me briefly to say that the event was suppose to be a play off of old movies like One Flew Over the Cuckcoo’s Nest. In response, I told her that I understood their intentions were never to be offensive, but explained that it was possible that a girl who was privately cutting herself may have attended that night and been negatively impacted if she saw the scene of a girl slicing into her body with the signs “Danger! Psychos!” hanging on the walls. I explained how this girl might be afraid of being labeled a “psycho” and as a result may avoid treatment. I then told her that my son has experienced psychosis and questioned what he’d think of himself had he seen those signs on the walls?

I then shared that, as parents, we face ridicule for medicating our son and that their mockery of a MED STATION only adds to the abuse we feel.

I also reminded her about the high suicide rate in our small town and that this event doesn’t support those parents who found their children dead.

She seemed to be really listening, admitting that she had no idea families like ours were dealing with these issues. At one point her eyes softened and she started to tear up a little. She said, “You know, I did have a gut feeling that this would be wrong in the very beginning, but the younger staff members talked me out of it.” She then went on to share how she grew up with a child who was disabled and was well aware of the struggles that individuals face when they’re different than the “norm”.

Before I left I asked her if they would consider not using mental illness as a theme in the future and to remove the offensive images off of facebook.

She nodded her head in agreement and apologized for their insensitivity and promised she would have a talk with her staff.

I left feeling pretty proud of myself for stepping outside my comfort zone and was hopeful that this conversation may have a positive affect somewhere down the road. It’s the best I can do.




Thursday, November 1, 2012

I was Horrified! Mental Patients are Not Monsters!

This Halloween our community clubhouse had their annual haunted house. As we were about to attend the event with our older boys, I noticed that the haunted house was titled “The Asylum”. The invitation read, “Attempt to maintain your sanity as you tour through ‘The Asylum!’”

Hmmm... We decided that it was probably best to stay home.

The next day I saw the photos posted on Facebook. I have to say, I was stunned. They created a haunted house that was about mental patients being out of control. I guess I expected a little gore at a haunted house, but the scenes created were shocking to say the least.

Instead of monsters and creatures, they created a scene of a young girl dressed in a hospital gown calmly sitting in a bathtub cutting herself. Behind her were the words, “NO MORE PAIN” written in blood. All around the girl were sharp objects such as knives and broken glass used in her “cutting” episode as blood dripped from her wounds.

Another scene was a young man in a hospital gown above a toilet. He was smearing feces all over the walls.

Down the hall there was a sign that said “MED STATION” and a line of children waiting to get their meds, all appearing like drugged up victims with self-inflicted scratch marks on their faces.

A sign that said “DANGER! PSYCHOS!” hung from the hospital wall as a man that was chained in a hospital gown stood in a room surrounded by manic writings on the wall.

I usually try not to be offended, but I felt my heart race as I saw these images. They were successful in horrifying me, but it wasn’t because I was scared, instead I was thinking...

What if I had brought my kids to see this? What would my son, who himself suffers from a mental illness, think about these images?

What can images like this do to a community who has a high suicide rate in their youth? What about the parents who have found their children dead with letters of “No more pain.”

How will we ever build compassion for those suffering with mental illness if they remain a “monster” in the eyes of the public?

And most importantly consider this. Stigma is one of the greatest barriers for individuals who need help for their mental illness. Images like this can discourage people from seeking the help they need. Will the girl who cuts herself in private ever feel comfortable in asking for help? Is she afraid that people will think she’s a “dangerous psycho”? Not getting treatment can lead to her death. This is a serious issue!

I know this question is tired, but I have to ask. Would they ever think to create a haunted house with cancer patients in a cancer ward?

I’m so disappointed in my community, I know that they never intended to be offensive and that they worked really hard volunteering their time to create a fun evening for families, but they are sorely misinformed.

We have so much more work to do before society sees mental illness as a real illness, with real patients and families who suffer tremendously.

Tomorrow I’m meeting with the head of our community organization with hopes of making a change— one person at a time.


Tuesday, October 30, 2012

Remarkable Child

I pretty much bawled my eyes out the first time I saw this video. Ok, who am I kidding, I cry every time I see this! Jodi DiPiazza, a remarkable child with autism, gives an amazing performance with Katy Perry. You’ve gotta see this!

I wish you all a happy Halloween and hope that you can create special memories without all the challenges the holiday can bring. For us, we hope to have our little one go trick-or-treating for the first time. His fears have kept him home in the past, but this year he says he’s ready to do it! Wish us luck!

Link to video:
http://www.youtube.com/watch?v=QX-xToQI34I&feature=player_embedded




Sunday, October 28, 2012

Let the Assessments Begin

This Monday morning I have a meeting with the principal and teacher of my youngest son so we can begin the journey of trying to help him. I’m hoping that they’ll agree to do some academic testing to see if my son has any struggles or if he’s just bored. Already I’m prepared for a little challenge since this principal has shown in the past to be resistant to testing and I’m sure he’s learned that I can be a little persistent. Should be a fun meeting (eyes rolling)...

I’m also preparing for my youngest son’s first psychiatrist appointment where the doctor will do an assessment to investigate the “voices” and other anxiety symptoms. Since this is our first appointment, I’m prepared to expect little since we’re just starting out. This is where experience helps, I’ve learned not to expect so much from the doctors in the beginning. I laugh when I think back to our first appointments with my oldest where I thought coming prepared with mood charts and video of behavior that I would leave with a clear diagnosis and treatment plan, boy was I wrong. Obviously now, I don’t have such unrealistic expectations and understand that this is a long process and patience is required.

On a positive note, we went to a fall festival at the boys’ elementary school and I got to speak to some of my oldest son’s former teachers who all were so excited to hear about how he was doing in middle school. One in particular made my heart swell when she gave me the biggest hug and said, “As a teacher there are always a few students you never forget. For me, your son is one of them. I think of him often and hope he’s doing great. I’ll never forget him, he was very special.”


Thursday, October 25, 2012

For the First Time

Yesterday my oldest son wore jeans for the first time since kindergarden. That’s 5 long years of sweat pants! If you have a chid with sensory issues you’d understand what a big deal this was. For him, the scratchy, tight material of denim was like sandpaper on his skin, over time it became unbearable. But thanks to some hand-me-down jeans we got from my cousin (Thanks T!) we were able to pull them out when we realized that all his sweatpants were in the hamper. At first he was hesitant, but I reminded him that this was the year for “firsts” and thanks to his stability all things from the past may be new again.

So he gave it a shot, and it turns out, he loves them!

I know it seems ridiculous to get excited about something so small, but what it represents is so much bigger. Our son is feeling better.




Tuesday, October 23, 2012

DSM Guide and a New Diagnosis for Kids

I read an article today in the Wall Street Journal about the revision of the DSM Guide (The scientific bible that doctors use to diagnosis mental illnesses). I have to say, I was disappointed in the latest news. The article exposed the battles between scientists over whether or not a new diagnosis will be created to reduce the number of children diagnosed with bipolar disorder. The hope is to provide better treatment for kids who aren’t responding to the typical treatment methods being used today and if anything, collect more research dollars into the field of mood disorders in children.

Hearing about the division among experts, some even quitting over the dispute, leaves me to believe that we’re still a long way off from getting a true understanding of what our children have. Even if they add the new diagnosis to the manual, I’m sure that there will still be a lot of divisiveness over it among professionals. On top of that, if they do add it, there currently is no recommend treatment plan for these kids, so all we’ve gained is a new label.

And what about kids who are responding to current treatment, will they maintain the “bipolar” label?

How will insurance companies respond?

How will doctors respond? I know at our previous HMO one of our son’s psychiatrists told me that she would no longer diagnosis children with bipolar disorder but instead would use this new label only. But does this type of blanket approach really help kids, or does it just reduce the number of kids diagnosed with bipolar disorder? In the end, she admitted that the medications used would be the same currently used for bipolar disorder. So in this case, will any good come out of this?

There’s so much to consider...

The Long Battle to Rethink Mental Illness in Children:http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html

Sunday, October 21, 2012

What I Fear Tonight

I spoke with our oldest son’s psychiatrist about my little one’s “voices” and he first reassured me that this is fairly common in the kids that he sees and that he doesn’t think my youngest child is experiencing psychosis, but based on the running list of things we’re seeing from his anxieties to “the voices”, he does think it’s time to do an assessment.

You know what my first thought was?

I hope he doesn’t recommend putting my youngest son on medication.

Does it sound strange that I would think this since I’ve seen first hand the miracles of medication for my oldest?

I would never want to deny my children the opportunity to have a more fulfilling life, freed of symptoms that bring them harm, yet if confronted with the recommendation to medicate another child, I would feel scared all over again to take this step. I’m well aware of the risks involved with medication. I take it very seriously. Every night I pray over my oldest son that the medications he’s taking would do only good and no harm.

I don’t want to pray this over two of my children.

I know I may be getting ahead of myself, I just wanted to share that this doesn’t get easier.



Thursday, October 18, 2012

Little One has Voices Inside His Head

This past weekend we experienced a first with our youngest son. After losing a game with his brothers, he became upset, which is pretty typical these days. As I was consoling him, he yelled out, “Stop laughing at me!” I jumped to his brothers defense and said, “Honey, your brothers weren’t laughing at you.” He responded, “I know, it’s not my brothers, it’s the voices inside my head.”

I immediately tried asking him about it, but he responded quickly, “I don’t want to talk about it!” This was the same response he gave when he shared he had bad thoughts in his head about a month ago.

So the next day I tried to ask him again, hoping that once removed from the situation he would be more comfortable. At first he was very hesitant. So I reassured him that he wouldn’t get in trouble for anything he said and that nothing bad would happen by telling me.

Appearing reluctant, my little one explained that he had voices in his head. Not Mommy, Daddy or his brothers, but voices of other kids, “strangers”. He told me that they call him bad names like idiot and dork and laugh at him a lot. They also tell him to do bad things like steal money from my purse, to beat up his brothers or to destroy property. These are his words as he described it. When I asked what would happen if he didn’t do the bad things, he said he would get a headache. He said that the voices make him feel sad or scared. When I asked if the voices were real, inside the house or inside his brain, he said that they were inside his brain. He said sometimes they are just one voice or sometimes they’re a group of voices.

Hmmm... that’s unsettling.

We definietly can see the correlation of what he shared with me and his behavior lately. It isn’t uncommon for him to run out of a room screamming, “Stop laughing at me!” when the family is laughing together (never at him). He’s quick to assume that people are putting him down when they aren’t and overreacts to a lot of situations. He’s also been putting himself down a lot saying that he’s a horrible person.

I gently let him know that the voices weren’t real and I would try to help them go away forever, but he needed to let me know when they tell him to do bad stuff or laugh at him. Later that day, he came to me twice about the laughing inside his head, I told him that we could stop it if we sang a song together. He was very willing to participate and asked, “Can we sing You Are My Sunshine?” We did and it seemed to do the trick.

I spoke with his therapist and right now she thinks this is related to his anxieties. She thinks the voices are maybe his own thoughts and feelings that he’s struggling with. So we’re making a big effort to give him lots of positive feedback, remind him constantly that he’s a great kid with hopes to override any negative thoughts he has inside.

It does concern me that the voices were described as being “strangers”, sometimes more than one and that they make him feel sad or scared at times. Poor guy, no wonder he seemed so stressed all the time.

I’m glad that he finally opened up and shared what he was experiencing. Now if I can just figure out how to make it all better—because that’s what mama bears do!


Tuesday, October 16, 2012

Palilalia Vocal Tic

If you’ve ever watched the tv show The Middle you’re familiar with Brick (the youngest child) and his quirky way of repeating his own words in a whisper. For example, he’ll say, “I’m going outside to play.” Then whisper, “to play.” I’ve always been fond of this character, maybe because my youngest son also whispers after making a statement.

Until this past week, I thought this pattern of speech was unique to my son and this character, but on a recent episode of The middle they outed this behavior as a “vocal tic.” So of course I ran to the web to see what I could find and sure enough there’s a vocal tic called Palilalia that describes this behavior. I also found a lot of other parents describing the same exact whisper in their kids. Don’t you just love the web!

Palilalia is described as being the involuntary repetition or utterance of the same word or phrase, often the speaker’s own words. It’s often associated with other conditions such as Tourette’s, Parkinson’s, obsessive compulsive disorder and autism. I imagine my son was using this behavior to cope with his anxiety as he was also showing other signs of OCD during this time. I think these kinds of ritualistic behaviors helped ease his anxieties. Thankfully this speech pattern has almost disappeared, only popping up every once and a while.

It’s interesting to me because my oldest son also had speech issues. When he was in preschool he developed a serious stutter and had to see a speech therapist to overcome it. Even though the therapist at the time thought he would have it to some degree as an adult, he eventually outgrew it.

I have to admit, no matter what you call it, I’ve always thought my son’s “whisper” was kinda cute. I’m sure I’ll miss it when it too disappears forever.

(Sorry no video clip of the actual whisper, if you want to see it, look on YouTube and you’ll see lots of Brick’s whispers. I was trying to avoid copyright issues and used only clips provided by ABC.)

Sunday, October 14, 2012

Hello Hypomania

It appears our oldest son may have been experiencing hypomania this week in the more traditional form. It only lasted about 2 days but the behavior was noticeable by everyone in our family, including our son.

I first noticed it when I picked him up from school, he was full of conversation, very excited and seemed pretty happy. Of course I enjoyed the positive mood and soaked in all the smiles. But once home, it became more pronounced.

He began talking non-stop about his creative ideas and plans, so much so that the other kids felt annoyed by the behavior and I too have to admit to feeling overwhelmed. At one point, he was in my office pacing back and forth, giving me great details about the plans he had in mind. His movements were so constant that I had to ask him to stand still since he was making me dizzy.

I then commented, “You seem to have a ton of ideas in your head.” He said with a huge smile, “Oh yeah, my brain is full of them! I just can’t stop thinking about them.” I then said, “You seem to be feeling pretty good today.” He responded with an even bigger grin, “Yeah I do, I feel really good!” Then he broke out in giggles and used his hands to cover his grins and laughs, trying hard to contain himself.

This was very unusual for us since we usually see irritability. My husband and I both agreed that his behavior seemed like someone on a drug. He was persistent, intense, full of creativity and plans, it’s like his brain was speeding on the freeway and nothing was going to stop it! He was clearly experiencing a mind altering mood!

As the day progressed, his elevated mood continued. By evening he was making plans to journal all his ideas down in a notebook so that he could eventually get to sleep.

When morning approached he was up earlier than usual and followed my husband around the house with his creative-based conversations. Though they weren’t really conversations since he was doing all the talking. At one point my husband excused himself to the bathroom, but my son kept rambling on outside the bathroom door. By afternoon, he was talking in-depth about the polar coordinates changing in our lifetime while I was trying to blow dry my hair, all cool stuff, but his passion was so over the top.

Then came the crash.

He started talking about school and some difficult moments, then the tears followed. He began breaking down, just minutes after a speech over his love of science, he now was crying in my arms. I held him tight and told him that everything was going to be alright.

We were in therapy about 45 minutes later, by then he seemed to be settled down and has been ever since. The therapist agreed that this was probably a breakthrough symptom.

It’s funny, even though my son has a working diagnosis of bipolar disorder, I don’t hold on to that diagnosis as something final. Especially when he has stability for long periods of time. Then I see this kind of behavior and think... maybe this really is a bipolar illness.

After all we’ve been through, is it strange that I still think this way?

Do we ever feel ready to accept a diagnosis?