A Fathers' Day Tribute to a Very Special Daddy

As I child and young adult, I never really celebrated Fathers' Day much. In fact, the only thing I knew was that my younger brother was born on this blessed day. I had the privilege of having an absentee father. Since he was never around during my formative years and when he finally did show up, he was less than stellar, I appreciate even more my little girl's father.
When I was dating the man who would I would eventually marry, he told me that he wanted to have a girl to spoil like I never had. He wanted me to see what true love was. I believe that God does grant you the desires of your heart, so it was no surprise to me when I learned that I was pregnant with a girl. My husband kept his promise from the moment our special girl was born.
At times I was jealous of their bond. She did many firsts with him: first giggle, first word (DaDa) etc. Overtime, I grew to appreciate this special bond. It was like watching the childhood that I should have had.
When we first learned that our daughter possibly had a mental illness. He stuck by me. He vowed to keep being the kind of dad our special girl needed. It was hard work. It nearly broke him to see her in so much distress. Together we worked to get her the help that she needed.
Then once she was stable, we noticed that she had many characteristics similar to those of an autistic. This led to an eventual diagnosis of autism. It was another blow to my sports loving husband as he saw his dreams for her slip away. We both worked on new dreams for our daughter. The additional diagnosis of autism was just sinking in when we learned that our daughter had a brain tumor and needed emergency surgery.
Again, my husband, my Knight in shining armor, stepped up to the plate. He kept a vigil by her bedside those first few days. We were led to believe or led ourselves to believe that our daughter would be cured once the tumor was removed. Nothing could be further from the truth.
During this time, my husband had been reinventing himself. He accomplished his lifelong dream of becoming a teacher. Unfortunately, the only job he could find took him hours away from his precious daughter. So he began a quest to find a teaching position closer to home. It became clear very early on that in order to find a job closer to home, he'd have to move his family. A move that took us miles away from family and friends. A move that at first our daughter resented very much.
Shortly after our move, we noticed that the symptoms that led us to the diagnosis of the brain tumor, had returned. I put on my mama bear hat and went to work finding answers. We learned that the tumor had, thankfully, not returned, but its absence was sending mixed signals to our girl's right side. Her speech, swallowing, and movement we affected. While I set about getting our daughter the necessary treatment, my Knight set about providing for us. He was very much a part of any decisions that were made on her behalf. He never told our daughter that she couldn't do something or that she looked funny. These were phrases that I'd heard from my father. I am so glad that my daughter only hears encouraging phrases from her daddy.
Last week, our daughter underwent anesthesia for Botox injections that may or may not improve the dystonia and spasticity on her right side. Since it is summer vacation, my Knight, my daughter's daddy, was able to be present after she woke up. I know he'll continue to be her biggest cheerleader whatever curveballs life throws her way.

Any man can be a father. It takes someone very special to be able to be called Daddy

The Amazing Thing My Daughter with Bipolar Disorder Told Me

Menopause is a real beast! In the last few months, I've found myself crying over the littlest things. Some days a simple smile will drive me to tears.  Yesterday, it was a comment that my daughter made.
I was taking her to school after a morning appointment. We were chatting about some plans that she had with her father later that evening. I remarked how much fun she'd be having going to a diner that she and I had previously gone to. She replied that I was welcome to join them. It was at this point that I felt the tiniest of tears forming on my eyelids. I told my daughter about them and how silly and stupid I felt. She reassured me by telling me that it wasn't silly or stupid. I then went on to tell her how much it meant to me to be invited to join them on their father/ daughter date.
When my daughter was so unstable, she hated me. She resented that I had quit my job to care for her. She only knew her father as her caretaker. He was the stay at home parent since I was so busy working full time.  As I drove along, I reminded her of these things. While we reflected on some very dark days in our family's history, my daughter got very quiet. Then, in what can only be called a moment of clarity and wisdom, my daughter said, "Mom I'm sorry for any physical, emotional or mental harm that I caused you in the past. I'm sorry for any scars you have on your heart that are from me. I hope that you will forgive me."
At that point, I lost it. The flood gates were opened. These very special words just came out of a 12 year old child's mouth. Who was this child? Wow! I never thought I'd ever get an apology from her. If I did, it wouldn't be for years to come.
As I heard these words, I thought of all of the moms and dads who may never get apologies from their children. Some parents of  adult children with mental illnesses are entering their twilight years. I consider these words a priceless gift.
Once I'd dried my eyes with the back of my sleeve, my daughter went on to tell me that she doesn't like thinking about the times when she was aggressive. For her they are painful memories. She knows talking about them is part of the healing process for our whole family. She explained to me that her experiences, good and bad, with mental illness; are why she wants to continue to tell our law makers about changes that need to be made in our mental health system. She said, "As long as they want me to, I will keep going to Washington, D.C. I want to let others know that it is OK to have a mental illness. I'm not a bad person. My brain was all jumbled up and confused."
Soon after this, we arrived at her school. Before exiting the car, I asked her if I could share her powerful words with others. She graciously agreed.
I understand that my daughter still has many more years under my roof. Some of those years may be very turbulent ones. For today, I will cling to the words that were music to my ears. The memory of these words may serve me well during periods of instability. They show me what my daughter's true heart's desire is. I will continue to help her advocate for herself and others like her.
Now excuse me while I get some more Kleenex.

My daughter and I on Capitol Hill in 2016

The One Fear That I Have For My Daughter who has Biploar Disorder

As May 2016 draws to a close and with it Mental Health Awareness Month, I wanted to share with you a big worry that I have. It's not being hospitalized again  for behaviors. We've dealt with this before. It was scary the first time. We'll know what to do when/ if my daughter needs this again. It's not even if The Wonder Drug Amantadine, stops working. I'm convinced that Dr. Wonderful, Princess's psychiatrist, will find something else. It may take awhile to achieve stability, but it will happen. It's not even that my child may need to live in a group home as an adult. I've resigned myself to the fact that she may never go to college.
My greatest fear is that my daughter may one day have to live at a residential treatment facility. Since California does not currently have any for high flight risk patients, Princess would most likely have to go out of state. In 2013, when my daughter was so unstable, we were seriously considering an out of state placement. We're so thankful that with a therapeutic day school and an amazing combination of medications, Princess has been stable for almost three years.
I know of at least three families who have had to place their children in residential treatment facilities. Two of these children are currently out of state. It's gut wrenching hearing their stories.
I worry if attending one of these facilities may do more harm than good. I worry that no one will love on my daughter like her father and I do. I worry that she'll be at one for a very long time.
Some people may ask why I am worrying about something that may never come to fruition. I say that I know the realities. My daughter is still in puberty. In the next few years as her hormones potentially throw the chemicals in her brain off kilter, instability and a placement in a residential treatment facility are very real possibilities. I've seen and heard of this happening with many children with mental illness. Sometimes there are even typically developing teens who require an out of home placement.
I do cling to the hope of one family that I know of whose daughter is doing very well. This mother shared with me how hard it was having her child out of the home. It was very necessary for the rest of the family's safety and well being. Now this young lady is making incredible strides. The RTC she attended gave her the tools that she needed.
For today, I live in the present. I'm choosing to focus on the fact that my daughter is doing well. She's learning how to advocate for herself. Her school has been giving her the tools to help her live well with mental illness. For that I am grateful.
P.S. I know that my friends whose children are at RTC's would covet your prayers. Thanks.

Looking Back: My Daughter's First and Best Behavioral Health Hospitalization

My daughter's been blessed with pretty good physical health. She's rarely sick and hasn't had to miss much school due to illnesses. Her mental health has been almost the opposite. Even though she's been stable over two years now, she's missed a lot of school due to behavioral health challenges.
She was diagnosed in August of 2011 with bipolar disorder, however it wasn't until over a year later that she had her first hospitalization. As luck ,or divine providence, would have it, I was out on stress leave from my teaching job so I was able to be available throughout her entire stay.
In October of 2012 my husband and I were attempting to get our daughter ready for school. For whatever reasons she still had not transitioned back to  school. She was having an extremely difficult time getting ready for school every day. We saw a lot of aggression and self- injurious behaviors during this time. Finally one morning, I made the dreaded phone call to our local police to ask for assistance. I truly was hoping  that we could eventually make it to school that day. The officers who came out that day didn't really know how to help us, but they were able to diffuse the situation. My child calmed down enough so we were able to transport her in our vehicle to an Emergency Room not in our city, but still close by. My daughter was seen by the triage department before being taken back to the ER's psych ward. It was a scary place for sure.
At the time we had insurance through my work that was pretty amazing. We only needed the doctor on call to approve hospitalization for my girl. For all of her future hospitalizations, she was on government insurance. We had to jump through many hoops to get approval on each of those occasions.
The problem we had this time was not with getting someone to agree that my daughter needed hospitalization, rather it was finding a bed.  The hospital we went to didn't have a place for an eight year old with mental health issues. We had arrived at the ER around 10 a.m. that morning. By 6 o'clock that evening the nurses still hadn't  found a bed in a neighboring city. I finally spoke up and asked what the hold up was. It was then that I discovered that they had only been looking in the county that we live in. I implored them to look into other counties. Finally at 9 p.m. a bed was found in different county over 100 miles away. I didn't care, I was elated that one had been found. My husband and I called our therapist who then called the facility to make sure it was a quality hospital. Once the decision was made, we signed tons of paperwork to pre-admit her. I think it was almost midnight before we were told that the ambulance that would be transporting our daughter had arrived. At this point my child was calm and almost angelic. The ambulance workers strapped her in and buckled her in just to make sure. This was a new and terrifying experience for all of us so I rode in the back while my husband followed behind in his car. I recall that it was about 4 a.m. when we arrived at our destination. It was eerily quiet  and dark in the hospital corridors.  When we reached the youth unit, we signed more paperwork while the nursing staff took our daughter's vitals. Normally, when a child is admitted to a hospital, the parents are allowed to see where there child will be staying and in most cases, will be offered a bed to sleep on. In behavioral health hospitals, this is not the case.  We were ushered out while our precious baby was whisked off behind a set of locked double doors. That first experience that morning was not as traumatic as it might have been because my daughter was tired and ready for bed. As we were escorted out the front door of the building we were told the normal visiting hours. We were also told that since we'd traveled quite a distance, we could see our girl in a few hours.
As we stumbled out into the pitch black darkness of the early morning hours, numb and in shock,  I looked down at my watch. It was 5 a.m. I still hadn't slept a wink and was suddenly overcome with exhaustion. My husband and I had no clue where the nearest hotel was. We both looked up at the same time and noticed one right across the street from the hospital. It was a godsend, an expensive godsend, but a godsend nonetheless.
After we checked in, we promptly fell into a fitful sleep. I woke from my slumber sooner than my husband so I went down to get a breakfast. Then I brought my husband up something to eat so that we could see our cherub as quick as possible.
I don't know why I thought it would be easy to see my daughter that first morning. It was one of the roughest days I had ever experienced up until that point. As the double doors closed at the end of our visit and we left, our beloved child cried gut wrenching sobs. I knew that she was where she needed to be. I knew she was safe. Still, it was hard.
The hospital staff encouraged us not to visit every day so we went back home. Over the course of the next 10 days we saw our daughter as often as we could. I talked with her social worker every day. When she was discharged, we couldn't find an outpatient program close to our home, so my daughter and I stayed at a nearby motel. On the first weekend, we were advised by our private therapist to stay close to the hospital instead of making the trek back home. Our therapist felt that our child might not be ready for a home visit yet. She also thought that if she needed to return to the hospital, being close by would help her return to the place she had been at. As it turned out, my girl was still unstable and required more hospitalization. She was accepted back at this wonderful hospital since she was in their outpatient program. She stayed for another 10 days inpatient before resuming their day treatment program.
While at this facility, the social worker acted as a liaison between myself and the school, and myself and the doctor. I later learned this is the exception, not the norm at most behavioral health hospitals. In fact we  never experienced this level of care and concern again.
The entire nursing staff worked with our family and our child in a loving, but firm manor.  At home, we implemented many of the coping skills that our daughter learned though.
It was rough, really rough leaving my pride and joy in the hands of strangers. At the end of my girl's stay there, they were no longer strangers, they were almost family.
In the years since this hospital stay I have come to realize how rare it is to come across such a wonderful behavioral health facility as this one was. For that I am truly grateful.

Look Mom! I found my smile

This picture was taken a few weeks before my daughter came home from her first hospital stay.

Ending Mental Health Stereotypes in First Run Movies

This weekend I went to see Warner Bros. "The Intern." It's cute comedy staring Anne Hathaway, Robert Deniro and Rene Russo. I really enjoyed 98% of it. The 2% that I didn't like, almost caused me to walk out of the theater. 
If I had been with my 11 year old daughter, I would have probably had to do some serious explaining to her about two very minor scenes. As one movie reviewer wrote:  "There is an awkward and unfunny joke about a child possibly having bipolar disorder." Here's what happened, when we are introduced to Anne Hathaway's character's daughter in the movie, we are told that she is not friends with a girl because "She is bipolar." This joke is repeated one other time. It garnered a few chuckles from the audience in the movie theater where I was. 
I am sorely disappointed in Nancy Meyer, the writer/director of the movie, for writing this into the script. I'm saddened that Kevin Tsuijihara, chairman and CEO of Warner Bros. allowed this in a film that is put out by his studio. The starring actors, Anne Hathaway, Robert Deniro, and Rene Russo must not know anyone who has this disorder. If any of these individuals did, they would not have allowed it to be a part of the script. 
We as a nation have come a long way in ending many stereotypes. The N word and the R word are no longer acceptable. Many are repulsed by these words. We've tried to show a fair side towards roles that women and men play in society (a strong point of this movie.) We've made great strides in breaking down the color barriers. This movie shows us that we still have a ways to go towards ending the stigma of mental health. 
Challenges in mental health are no laughing matter. My daughter struggles with bipolar disorder. Thankfully she's had over two years of stability, but it took her a lot of hard work to get there. 
It is my belief that if she had been old enough to see this movie, she would have been deeply offended by the little joke that was made about her disorder. 
As of this writing my daughter has not encountered rude comments or misunderstandings about bipolar. I'm sure that will not be the case, the older she gets. Movies and the media in general can do a lot to end the stigma and shame of mental illness.
Perhaps instead of saying that the daughter's friend was "bipolar", the writer could have said that she was having a rough day.
I implore those associated with this movie to really consider their part in educating others that jokes about mental illnesses are not OK. Maybe next time they are reading over a script that puts down or makes light of mental health challenges, they will speak up and asked that the lines be rewritten. The time for change is now. 

You can also follow our story on Facebook at Raising a Drama Queen: Musings and Insights in Bipolar Land

#EndTheStigma

#TheIntern

Talking About Mental Health on Capitol Hill Part3

If you have not read part 1 of this series, you can find it here. Part 2 can be found here.

After we returned to our hotel, we had a little bit of time before our last meeting of the American Academy of Child and Adolescent's (AACAP) Legislative Conference. My daughter, who was still sleep deprived from the night before, decided to take a short nap while I relaxed and ponderered over the events of our amazing day. We didn't get to actually meet any of our elected officials, but we did get to go to three of their offices and speak with their assistants about the national workforce shortage among child and adolescent psychiatrists, the need for sweeping reform in mental health and to thank these members of Congress for their support of continued funding for the Children's Health Insurance Program (CHIP). Even though Princess didn't say much at most of these meetings, she was the face of mental health. The representatives probably couldn't believe that this sweet angelic child had ever faced the adversity that we spoke of. I wish I had had more time to tell them more of our amazing journey. I do have their email addresses so I can email them. Hmmm...
After a time of reflection and rest, we headed down to the grand ballroom for our debriefing meeting. Many of the psychiatrists, residents and fellows shared wonderful stories about their meetings. There were also family members like Princess and I who shared their stories as well. I shared how at one meeting an assistant asked why psychiatrists who serve the adult population cannot be retrained to serve children and adolescents. At that moment, I did not have a good answer for him. I think I was just dumbfounded. If I could turn back time, here's what I would have said: "I believe a great psychiatrist is like a great teacher. Some teachers are professors. They are very good at teaching at the college level. Still others are fabulous preschool or kindergarten teachers who teach children at the beginning of their academic careers. The remaining teachers fall somewhere in between these two ends of the spectrum. We would never ask a kindergarten teacher to teach college students. It is just not her forté. Conversely, we would never ask a college professor to teach kindergarteners. He (or she) would fail miserably because he (or she) is not gifted in this arena. The same is true for gifted child and adolescent psychiatrists. They know children and adolescents best. They know how to develop a rapport with them. I'm sure my daughter would not have wanted to see a doctor who she didn't feel was able to relate to her."
I don't fault this man. He may have never had experience with a child or teen with mental illness. That's OK. My daughter may have given him a little education. Her mother will follow up as well.
As the meeting and the conference drew to a close, I have to hope that my presence, my daughter's presence, along with the other doctors and family members attending AACAP Legislative Conference made a difference for the future of mental health in our nation.

Stay tuned here as I delve more into the key issues presented at this conference. I'll also keep you posted as I follow up with our legislators. Don't worry though, there's always a funny story lurking. After all, I am raising a drama queen.

Talking About Mental Health on Capitol Hill Part 1

On Wednesday, April 22, 2015 my daughter and I flew from Los Angeles, CA to Washington, D.C. to attend one of the most important events in her ten-year old life. We were slated to participate in the American Academy of Child and Adolescent Psychiatry's (AACAP)  annual legislative conference. We were joined by approximately 200 doctors, residents, fellows and other family members for the common cause of addressing mental health concerns on Capitol Hill. I am very qualified to speak on this topic because I have lived with someone who has a mental illness. First it was my parents and now my daughter.
After we found our hotel, we had almost a  day to adjust to being in a different time zone. AACAP prepared us very well for the task at hand. They sent us one-page briefs a few days in advance. They also hosted several training sessions at the host hotel. I, of course, read up on these briefs and even studied up a bit on the legislators my daughter and I were slated to visit that Friday. I wasn't exactly sure how to prepare my daughter other than to tell her that she was going to be speaking to Congress. She was so cute, in the days and weeks leading up to or visit and even while we were in D.C., she told anyone who would listen that she was going to speak to "Congress about mental health." She wants to be a lawyer some day so this was perfect for her.
 During our first training, one of the doctors at our table suggested that Princess and I go up to the front with him to the mock meeting to tell our story. Since we were in the hotel's spacious grand ballroom, we were given a clip on mic. Princess wanted one as well. I felt since she didn't know the topic very well, it wouldn't be prudent for her to be miked so I dismissed her. While we were on stage, Princess added her two cents about "Not wasting money like my mom always says." That sealed the deal. After that, Princess was a star. All of the doctors told her she was so brave and that they were so proud of her. I should have listened to her in the first place.
After that afternoon's training, we went back to the hotel room to rest before our big evening. We had been invited to dinner by the Depression and Bipolar Support Alliance as a way of thanking us and other parents who volunteer at A Balanced Mind Parent Network. There were a few things that stood out at this dinner. Even though it was loud, Princess had her blingy noise canceling headphones and her iPad so she tolerated the noise really well. Secondly all three children, ranging in age from 10-19 chose Mac N Cheese for their entrée selection. Some things never change. Lastly, on the way back to our hotel one of the moms lent Princess her heavy coat since this mom, me, didn't realize that 60 degrees in D.C. is not the same as 60 degrees in CA. Oops!
We were pretty done after our dinner and headed up to our room to catch some shut-eye only a certain little person couldn't fall asleep until 11:30 p.m. Even on a school night this is a bad idea. Stay tuned to see what happened the next morning....

Coming on Monday 5/4:
Part 2- Tells more about our trip and explains about the first issue we presented on.

Photo credit goes to my friend Dawn at Hardly Bored

Musings on Mental Health

Many people think they know what it looks like or is supposed to look like but how many really know what a mental illness looks like in real life?  I've had three people that I am biologically connected to, suffer from mental illness. It is not pretty but it is not something to be afraid of either.
Both my mother and father suffered from mental illness during several periods in their respective lives. My dad had schizophrenia. He was not medicated much of his adult life. His refusal to get the help he needed made him unstable. My mom had what was known at the time as a nervous break down shortly after her marriage to my dad.  Today doctors call this a Psychotic Break. Once she became a mother, she remained stable until the last chick (me) left the nest. The last four or five years of her life we searched for the right medications for her, but never found them.
Between the ages of six and seven my daughter was diagnosed with first ADHD and then Bipolar Disorder . We can now add OCD to that combination. Since I saw how difficult mental illness was on my parents, I pushed harder for my child to become stable.   I researched, joined an online support group and sought out qualified doctors and therapists. There was even a time when I searched for the best behavioral health hospitals in a hundred mile radius of our house.
I had no real control over what medications ultimately helped my child become stable. Her body pretty much dictated that.  We never kept her on any one medication any longer than was necessary. Some psychiatrists subscribe to the idea that if you just titrate up on a medication, eventually, you will see some benefits from it. Dr. Wonderful's belief was that we should see some changes, no matter how small, before increasing a drug. As a result of this and all of our doctor's cutting edge practices, Princess has been stable for over a year now.
Another benefit to having  parents who had mental instability, was that when my daughter was at her worst, I knew how to deal with it. I never told her what she was thinking or feeling was silly or irrational. Instead I'd try to get her to work through it or distract her. It's funny, when she was a toddler, my husband and I  would distract her to get her mind off of something that was off limits or bothering her. Now that she's older we still employ those same tactics but we have to be more sly about it.
The great thing about having a mental illness (Yes I just said that), is that the person who has it enjoys life more when they are stable.  They, and in turn their family, know how hard it was to achieve stability. They realize that every day of stability is a gift. My husband and I have noticed that our daughter feels things more deeply than the average person.  If someone is hurt or sad, my daughter is the first to console them. She has a tender heart because she knows what it feels like to hurt or be sad.
The stigma surrounding mental health is one of its biggest stumbling blocks. Many people do not want to talk about it. I feel like it's the elephant in the room. When I am at a gathering and mention that I have experience with mental illness, invariable one or two people will say, "Me too." I thought I was all alone in my struggle to get my loved ones back to being mentally healthy but it turns out there are lots of people just like me.
While living with someone with mental health challenges is difficult, it is not impossible