Sunday, September 29, 2013

Haunted House Update: The Chains of Stigma are Heavy but We are Stronger

It’s been an emotional few days since I tried to reason with my local community clubhouse about not portraying the mentally ill as monsters in their annual haunted house. I went from anger to disappointment, then to tears. I couldn’t help but feel defeated. What stuck in my mind was the condescending tones and laughter that mocked me. I wanted so badly to stand up against them publicly, even turn the gruesome photos over to NAMI and alert the media about their insensitive plans, but I felt weighed down by the same stigma that I was trying to fight. I couldn’t go public because the risk to my child was too great. I was sad knowing that had it been cancer they were mocking, or even autism, I could publicly stand up and pull my troops together (you included), but because it was mental illness I risked ruining my son’s childhood. He’s been hurt before when others found out he was struggling with mental illness, I couldn’t let it happen again.

Stigma. It can be a powerful thing. It can wound you and keep you captive. Everything in my body wanted to fight, but in this situation, the stigma seemed too powerful. It felt like I was fighting something with my arms tied behind my back with tape over my mouth. I had a lot of energy to thrash around, but I wasn’t able to make a sound. It made me expereince in a small way the stigma that so many people are facing day-to-day while living with mental illness. It made me sick to my stomach.

When the conversations with the club management ran through my mind, I was troubled by one point we disagreed on. The manager tried to argue that because I was the only one to complain, it was unjustified to make any changes. He said, “So if everyone wants to do one thing and one person thinks it’s wrong, you think we should change it because of one person?” I responded, “Yes, if it’s the right thing to do.”

Isn’t that what we teach our kids? Just because everyone else is doing something, that doesn’t make it right. We still have to make wise choices, not blindly follow the pack.

Choosing to do the right thing has put an end to slavery and has given women equal rights, if we stuck with blindly following the majority we would never grow as a society.

I then asked him, “So what if the group wanted to do a haunted house with a 9/11 theme and they wanted to have people jumping out of windows. Would you still do it?”

After a long pause, he said, “Well, yes, if that’s what the group wanted.”

I sharply asked, “Can I quote you on that?”

He then of course back tracked and choked on his words.

I then pointed out, “Well how is this any different. Besides contributing to the stigma, what you’re doing is insensitive to a section of our population, why would you want to do this?”

He had no answer.

It’s great shame that our society can accept that a person’s heart or liver can get sick, but when their brain becomes ill, they’re considered evil or dangerous and on halloween, someone to mock. It just doesn’t make sense.

As the day went on, your feedback was pouring in through comments and private emails. I was showered with support and could feel your energy encouraging me to do something. Since I couldn’t risk connecting my blog to my community, I decided I had to start from scratch and form local troops that could join me. Thanks to all of your great tips, I devised a plan to call the local suicide prevention awareness group I’m connected with to gain their public support along with a long list of moms who they themselves were stirred with anger when they saw the photos from last year. Add to that my local chapter of NAMI, a local family resource center and even my church. I figured once the clubhouse received a number of calls from other mothers just as angry as me, they would no longer focus on exposing my son once it hit the media since there would be a lot of other mama bears now in the fight. When I came home my husband shared how he had read my blog and all of your comments and was fired up to fight this fight and we decided then to contact our mayor the next morning asking him to help us.

In a matter of hours my anger and tears turned into fierce energy, ready to take this on.

It felt damn good!

Then in a positive, yet anticlimactic moment, I called the clubhouse to confirm the contact info of all involved to release to the mayor’s office and my list of mama bears when the events director, the guy who pompously told me that he was not only using one straightjacket, but two, answered the phone. Upon recognizing my voice he said, “I’ve changed my mind about the theme this year, I’ve decided to do zombies instead.”


Later that day I stopped in at the clubhouse, I felt like I needed some closure. Now wishing that these previous conversations had taken place in person, because I believe people are different when they see you face to face, I wanted to thank him in person and show him a real person on the other side of our conversation—Ok, I admit a part of me still wanted to scream at him, but I knew that would accomplish nothing and that it was better to take the high road.

As I approached the events director he immediately recognized me, but his tone was softer and careful, I still sensed a chip on his shoulder. I stuck out my hand to shake his and said, “Thank you for changing your plans. I know it may be hard to understand, and little frustrating for you as you try to create this event, but this means a lot to me and other families just like mine. Plus, zombies are pretty cool!” I then handed him a news article and encouraged him and his manger to read it because it explains why you shouldn’t go “crazy” for halloween to help them understand that I am more than one voice.

He said that he never intended for all of this to get out of hand, in fact he was considering doing zombies the entire time but he felt rushed and went with last year’s theme at the last minute, acknowledging that yes, last year’s event was pretty extreme.

I got the sense that he changed the theme not because he grew to understand my position, but instead, he didn’t think it was worth the fight.

I wished he’d apologized for being rude to me over the phone, but I also realize that unlike last year, you can’t always change a person’s perspective or create compassion for something they don’t understand. Some people will never understand.

Sometimes change takes place in small increments, but in the end we’re still moving forward in the right direction.

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Thank you all for your encouraging comments and emails, your support meant the world to me!

Why You Shouldn’t Go “Crazy” This Halloween
Plan to play dress-up on October 31? Mental health experts say to bypass one particular type of costume: The kind that reinforces mental illness stigma.

In case you missed it—Previous post about these events:
I Am So Angry

Wednesday, September 25, 2013

I Am So Angry!!!

My heart is pounding, my hands are trembling with anger. I want to scream—I am so mad.

Last year my local community clubhouse created a haunted house event. Here is an excerpt from my post of what horrified me:
...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 more 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!
What followed was a conversation with the director, I explained how this type of event was hurtful to those who are suffering since it contributes to the stigma we’re trying to fight. Here was her response:
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.
So let’s flash forward one year later when today I receive an invite to our community clubhouse event that advertises a haunted house with the headline:

All souls 10 & up can try to maintain their sanity as they venture through the Maze of Madness.

WHAT!!! Are they serious? Hoping this was just a typo from using the text from last year’s event I called the clubhouse and spoke to the director of events.

What I got in response was, “Yes, we’re doing this... Nobody else complained last year, you were the only one... We’re not making a political statement, we’re just having fun...”

I tried to explain how portraying the mentally ill as monsters is hurtful to those like my son who have already dealt with the negative stigma from classmates. An event like this would only continue this stigma in a community that already has a large suicide rate among the teens.

I think I heard him laugh at me over the phone.

When I asked if they were going to use stray jackets again, he said in a pompous tone, “Yeah, maybe even two!”

When I agreed that they weren’t trying to be political, but that they were still contributing to the stigma even if they were “just having fun”, he told me that if I was offended, I should not come this year.

When I mentioned getting the media’s attention, he responded, “Tell the media, we’d love it!”

An hour later I got a call from the clubhouse, this time the manager. He told me that since I was only one voice, he couldn’t justify stopping this event. He said that 700-800 people loved it last year and I was the only person that didn’t like it. I explained that I was in favor of the event and just wanted them to avoid using mental illness in their theme. He said that he didn’t want to put limits on the creativity of the events director (previous person I spoke with). When I explained that in the media he would find many other people that are against this type of event and how it can bring some negative attention to our small community, he told me that he didn’t think I would contact the media and hinted that this would expose my son (He knows my family’s name). So I was told to stand before the board of directors and state my objection next month.

Now I sit fuming with anger over this.

Am I justified? Or am I being foolish?

My gut tells me to not let this go, yet I don’t want to do anything that exposes my son.

What would you do?

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Here is the update to the above post:

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Previous Posts:

I was Horrified! Mental Patients are Not Monsters!

Monday, September 23, 2013

Feeling Optimistic About 7th Grade

I recently met with my son’s new study skills teacher, it’s the class for kids with IEPs and 504 plans. I’m happy to share that I was really impressed. This teacher gave me his full attention, asking good questions and offering up useful solutions. But what impressed me the most was his initiative to sit down with each of my son’s teachers and education them about my son’s symptoms and how it may effect his learning in the classroom. He felt it would be good to prepare the teachers ahead of time so that when they meet me for the first time in our 504 meeting, they’re already in tune with what he’ll need and will take it more seriously from the start.

On top of that, I was encouraged to hear that the bullying behavior my son experienced from the 8th graders last year was unprecedented. As the teacher said, “Our 8th graders last year were the worst bunch of kids I have ever taught. They were just mean kids!” He encouraged us that this year would be a lot different and that the new bunch of 8th graders were a good group.

And as a bonus, the principal from last year was moved to another school, let’s just say that nobody shed a tear over that. In fact, I believe there was a celebration among both the students and parents, us included.

So with all that, I’m feeling very optimistic about 7th grade. What a difference good teachers make!

Sunday, September 15, 2013

A Special Child of God

Last week my middle son shared with me a conversation he had with another student in his school. As the boys walked to class and my youngest son ran ahead of them, the student asked, “Is your little brother autistic?”

I found this interesting that even though my youngest son was not diagnosed with autism, that the other kids seem to pick up on his “autistic traits” as the neuropsychologist called it. I can’t help to wonder how many other kids are picking up on these “traits”. Will he stand apart as he gets older? How will these traits appear as he enters into middle school and high school.

With Aspergers leaving the DSM guide, I imagine that there will be a lot of children left off the spectrum who have autistic traits. I’m not sure if this is a blessing or a curse.

One thing that comes to mind is the Aspergers support forums I researched. On there I read numerous accounts of individuals who grew up feeling outside the norm and it left them depressed and insecure. But once they later found out that they had Aspergers, they were finally able to make sense of their former struggles and found support in the Aspergers community, giving them a whole new outlook on life.

Will this next generation of kids left off the spectrum miss this connection and understanding? Will they go back to feeling like an outsider?

Thankfully my little one still seems comfortable in his own skin. Just this week he declared he was entering into the school’s talent show. When I asked him what talent he was going to show he said, “I’m going to play the piano.” I was surprised by his answer since he has never played the piano. So I asked him if he was going write his own song and play it for the school, he responded, “I am a special child of God and I don’t need to write things down!”

That my friends is definitely a special child of God! I hope he never forgets it.

Friday, September 13, 2013

Shame On You DC Comics—Suicide Is Not Funny!

This week DC comics made news for their appalling art competition where they asked artists to draw scenes of their Harley Quinn character attempting to commit suicide, and get this, naked.

Here’s how they described the final panel, with the previous 3 being very similar:
“Harley sitting naked in a bathtub with toasters, blow dryers, blenders, appliances all dangling above the bathtub and she has a cord that will release them all. We are watching the moment before the inevitable death. Her expression is one of “oh well, guess that’s it for me” and she has resigned herself to the moment that is going to happen.”
I almost have no words, reading about this contest, made me sick to my stomach. I can hardly believe that a company would be so insensitive and irresponsible.

If you haven’t heard, the rate of suicide is rising, the highest in 15 years. It occurs more commonly in males, which stands at 79% of all U.S. suicides. More than 90% of people who die by suicide have a treatable mental illness such as depression, bipolar illness, schizophrenia and/or alcohol and substance abuse. Yet only 38% of adults and 20% of children and teens receive treatment. There’s an average of 105 suicides a day, more than 300,000 in the past 10 years. Unfortunately, today many people died from suicide.

It’s completely irresponsible for a company who profits off of young and particularly male consumers to glorify suicide. It’s flat out dangerous because lives are at stake. Research has shown that teens are vulnerable to suicide contagion, where the suicide of one teen can affect the suicidal thoughts and behaviors of another teen. The last thing they need is their comic book heroes committing suicide!

It also goes without question that this contest is insensitive to those who have lost a loved one to suicide. And personally, having a child who has dealt with suicidal thoughts, I am disappointed!

Shame on you DC Comics!

I hope DC Comics will reconsider their contest and instead use this creative opportunity to bring awareness to suicide prevention.

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Tuesday, September 10, 2013

Suicide Prevention

Today is world suicide prevention day.

Just typing that feels heavy. Suicide... it happens you know, in every city and small town. My town alone has lost too many teenagers over the last few years to suicide. In response, my friend started a suicide prevention fundraiser to bring suicide awareness to our local high school after her beautiful son died along with two other boys, all just months apart, yet the suicides are still happening. A 13 year old boy and a school teacher died about a month apart before summer this year. It feels like an epidemic.

So what do we do about it?

I have to admit, I don’t have all the answers. It’s not something you can see coming all the time, I know my friend never saw it coming, and I myself thought her son was a happy, thriving teen, yet we were all wrong.

That’s the thing about depression, it doesn’t always look the same in everyone. Some people are open with their pain and others put on a mask to hide it.

I guess in our case we’ve been fortunate so far that our kids have shown signs of their depression. My oldest talked about wanting to die from the age of 7 and my youngest talked about voices that told him he was the worst person in the world while he drew pictures of death. But for those who are more subtle, seeing it may be impossible until after the fact.

I read recently of a mom who lost her daughter to suicide, most people thought her daughter was just being dramatic for attention, until she completed the act. Her mother now warns us all, “What I do know now is that if they ever talk of depression or suicide, they are serious.”

I think this is important for everyone to know. Regardless of past behavior, we have to take all threats of suicide seriously. Someone’s whisper of depression, may be their scream for help. We need to respond.

Here is what the National Suicide Hotline says we can do to help those who are threatening suicide:

• Be direct. Talk openly and matter-of-factly about suicide.

• Be willing to listen. Allow expressions of feelings. Accept the feelings.

• Be non-judgmental. Don’t debate whether suicide is right or wrong, or whether feelings are good or bad. Don’t lecture on the value of life.

• Get involved. Become available. Show interest and support.

• Don’t dare him or her to do it.

• Don’t act shocked. This will put distance between you.

• Don’t be sworn to secrecy. Seek support.

• Offer hope that alternatives are available but do not offer glib reassurance.

• Take action. Remove means, such as guns or stockpiled pills.

• Get help from persons or agencies specializing in crisis intervention and suicide prevention.

If someone you know has any warning signs we encourage you to call 1-800-273-TALK (8255) so that you can find out what resources are available in your area. Your call is routed to the Lifeline center closest to your area code. The local crisis center may have resources such as counseling or in-patient treatment centers for your friend or family member. Most importantly, please encourage them to call the Lifeline.

Sunday, September 8, 2013

Another Big Step for Big Brother

Last week we celebrated another big step in my oldest son’s progress. He bravely asked a cute girl to the 7th grade school dance.

I know this may seem small and insignificant, even expected for his age, but for me it was a huge step forward. There was a time when we weren’t sure our son would make it to 16, let only embrace the opportunities that lay before him, but there he was, as nervous as can be, finding the courage to risk rejection. He said it took him a whole hour and a half to muster up the courage, but at the end of the school day he asked her, “Will you go to the dance with me?” and she said, “Sure.”

After school that day he delivered the news with a smile spread ear-to-ear, proclaiming, “I had a great day and asked a girl to the dance!”

Yes, my jaw dropped open!

On Friday evening he showered and put on his best outfit, and Dad gave him a talk about how to treat a girl properly, including his responsibility to buy her a treat and soda at the dance. Then we dropped him off at the front of the school.

I have to admit, as I watched him walk away, looking ahead for his “date”, my eyes filled with tears of joy, I tried to embrace the moment and feel every ounce of its weight. I felt nervous for the experience he was walking into. Would he feel comfortable? Would he get sensory overload with the flashing lights and loud music? Would he fit in? But more than anything I felt the warmth of pride fill my heart. There was my boy, walking into the unknown because he chose to. He was putting past rejection behind him and letting go of social encounters that have gone bad and was choosing to experience what life had to offer for a boy in 7th grade. He was doing what I once never imagined... he was thriving.

After the dance he came home filled with excitement. He had the time of his life, but regretfully noted, “I tried to buy my date a treat and soda, but she said that she couldn’t have it since her mom doesn’t allow her to eat candy or drink sodas.”

Ahh... the simplicity of 7th grade dates, if only they can remain this young a little while longer.

Tuesday, September 3, 2013

How Much Do You Disclose to the School about your Child’s Disorder?

It’s that time of year again where we have our 504 meeting with the school to discuss all modifications for my oldest son and more importantly, when I try to educate my son’s teachers about his disorder so we can best support him in school. One tool I used last year, that I plan on using again is the brochure from The Balanced Mind website called Educating the Child with Bipolar Disorder.

Here is a link to it:

But even with this resource, I’m always wondering about how much I should share. It’s a very vulnerable position to be in and it’s important to disclose enough to get the support we need, while at the same time, trying to protect his privacy.

Last year I tried to be vague and things didn’t go so well. We had a lot of problems with the math teacher. But after an emergency 504 meeting later into the school year I got a little more real and revealed more details about my son’s disorder and how it related to his challenges at that time, particularly his depression. After that meeting we saw a major improvement with the math teacher’s attitude toward our son. He was more attentive and helpful and seemed to be on board with the plan.

But here I am again, a new school year, with a new principal (yay!) and all new teachers and I find myself asking, how much do I disclose?

So I thought I would toss that question out to you, I along with a few other parents that are reading this blog would love to know how you navigate this line of disclosure. Please tell us, how much do you share with your school?

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(Please note that you can always leave a comment anonymously by selecting “anonymous” when you post. You do not need to register first to do this, anyone can participate.)