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.

What Happened Next?

A few weeks ago I wrote about my failed suicide attempt. You can read about it here.
As with any major crisis there is always the question, "What happened next?" Followed closely by, "Have things changed?"
 After my failed attempt, I worked really hard to get to a better place. I met weekly with our family therapist who helped me tremendously. I also took medication for over a year. I also knew that I needed to teach at a different site. Our teachers' union felt the same way. We, unfortunately, were not the ones to have the final say. For reasons unknown to me, my district decided to keep me at the same site in the same grade level.
In June of that summer, I had removed all of the items from my classroom in hopes that I would be teaching on a different campus in the fall. Two days before the school year started, I put everything back in.
I'm not sure how I put on a smile that first day back, but I did. It is in my nature to be forgiving and hopeful. I desired to move past the events of the spring. In my opinion, I was the only one in this story who wanted things to improve.
Our union legal rep had encouraged me to not file a grievance until I returned in the fall. Shortly after the new school year began, we filed it because the working relationship between my supervisor and I had only worsened. I was like the kitty holding on to the rope with every fiber of its being. No one ever sees what happens to this poor creature. More than likely he eventually falls. That's what happened to me.
A few weeks after the grievance was filed, we heard the results. The decision was that it was unfounded. I knew at that point I had to let go of that rope at least for a bit.

On September 30, 2012 I went out on stress leave with severe pain in my right shoulder. I believe it was stress related. I did not know that I would never return to teaching. Less than two weeks later, my daughter had her first hospitalization in a behavioral health facility 100 miles away from home.
Sometime during the first few days and weeks of my daughter's hospital stay, it became clear what I was supposed to do. I really felt God telling me to stop fighting so hard to stay at a job where I would never measure up. My child needed me to be her caretaker. It was as if she needed more of me than I was able to give her when I was teaching. At the height of the school drama, I was working upwards of 60-70 hours a week trying to be the perfect teacher. My daughter got the measly leftovers. Not what I ever envisioned when I signed up to be a mom.
One thing that I had trouble letting go of was the guilt at not being able to stick it out with my darling kindergarteners. Their kindergarten year is the  first year of their formal schooling, the foundation of the rest of their education. Eventually, I was able to move past my regret. In the years since, I have had the privilege of being able to see a few of my students from that year. Not one of them, nor their parents, has shown me anything but love and understanding.
Once I let go of the virtual rope that I had been holding onto for so long, I felt so much relief.
Life has not always been a bed of roses these last few years, but I am so thankful that I have been able to be so much more involved in my daughter's well being.
I never was able to work things out with my supervisor. After I left, we didn't speak to each other. On the day that I removed things from my classroom, she made herself sparse.
My doctor initially diagnosed me with anxiety disorder which later became PTSD. It took me many months before I could even drive the route to my school that I drove for over ten years. Every time I tried I would have a panic attack.
 So that's what happened next after I  planned to end my life. Things have definitely changed in the years since my failed attempt.  I believe everything happens for a reason. Out of a dark and painful experience, came something beautiful.

After I resigned from teaching, I felt like this little plant peeking through the concrete.

*Photo credit and quote courtesy of my daughter. 

Can Ronald McDonald House Change My Mind?

Last week I wrote a post about how poorly my daughter and I were treated by a member of Ronald McDonald House Charities staff. You can read about it here. I emailed their San Diego office since that is who we dealt with. On Friday, I received an email response stating that they'd like to talk to me. Since it was late in the day I called back today.
I was given the director's business line and personal cell phone numbers. I knew this meant that they wanted to make things right. I called the company line first to see how receptive they were to my call. I figured if I didn't hear back in a reasonable time, I'd call the cell phone number next. When I called, I received a voicemail prompting me to leave a message. About ten minutes later, the friendly director called me back. What she said truly touched my heart. One thing that made me choke up was that she said that since she's been the director for just over a year they've had two cases like mine where they failed a family. Her reaction to that was that that was two incidents too many. Wow!
She wanted me to know that she was glad that she received my email on Friday because she needed the weekend to process this. It hit her really hard. In my family's hour of need, the Ronald McDonald House did not help but added to our stress. The staff's  desire is that the House to be a place where families can go check email, do laundry or have a warm meal. I really felt that this individual was genuinely sorry and that she wanted to make things right.
She informed me that she had read my blog and was going to use my experience as a tool to educate her employees about. Her desire is that all families be treated with dignity and respect. My situation is no less important than those of any other health crisis a parent of an ill child may be facing. She agreed with me that my daughter was facing a life threatening illness.
My daughter may not have cancer or kidney failure or need an emergency surgery, but that does not make her illness any less. I am very well aware that my daughter's Bipolar Disorder means that she has an increased risk of suicide. She's also got ADHD, OCD, and Autism that make things even more difficult. I'm fighting for her and others like her to defy the odds. The deck might be stacked against her, but I'm knocking it over.
The director ended our conversation by telling me how brave I was phone to her. She said that if it were her that she would not have made the call. I told  her that I am on a mission to make sure that our family's experiences doesn't happen to another family. I want things to be better for others. I let her know that I have the opportunity in a few weeks to speak to Congress about our nation's mental health crisis. I'm not going to be a parent that just complains, but rather one who helps to affect change.

This picture depicts what I hope more families experience when their child is ill, whatever the illness is.

Why I Won't Donate to Ronald McDonald House Charities

Today as I was driving through McDonald's to order my Diet Coke, the cashier asked me if I wanted to donate a dollar to the Ronald McDonald House. I politely said, "Not today." What I wanted to say was, "No. That will never happen until you change your policies." I was able to practice incredible restraint because I realized the cashier was just a messenger. She had no idea what my experience had been. Only a few people do.
That's all going to change today. Today is the day that I tell Ronald McDonald House Charities how they failed my child and I in our time of need. How they portray themselves to be there for all children, but they are in fact not.
Here's what I found at the Ronald McDonald House Charities' What We Do website page:

Helping a sick child fight their illness takes a big emotional toll on a family. Adding a financial strain can make it all almost too much to bear, RHMC can help address those problems, whether they involve housing that's near a hospitalized child, the expense of staying together in another city or even getting basic medical and dental care in a vulnerable city...."

This motto  certainly not true in our case even though we fit the criteria for their assistance.
In order to tell this story the way it was meant to be told, I need to go back almost two and a half years ago. During that time, my daughter was set to be discharged from a behavioral hospital over 100 miles from our house because even though we live in a metropolitan area there were no beds available to her. In our whole county, there are only thirteen beds for children in my daughter's age group with mental health issues who need hospitalization. We were told there were even fewer spots for outpatient treatment, something we considered crucial to helping my daughter achieve stability. The wait list to get into an outpatient facility 25 miles from our house was 2-3 months long. My husband and I knew our daughter needed immediate help. The facility that she had been staying at offered to keep her in their outpatient program, but we'd need to find a place to stay at night since the program only ran from 8 a.m.-3 p.m. on weekdays. Before I gave my final answer and agreed to this program, I asked if the hospital had a place they could recommend for us to go. The hospital suggested that I contact the local Ronald McDonald House since a children's hospital was not too far away. When I contacted the Ronald McDonald House's social worker, she informed me that it wasn't for children like mine. It was a place for children and families dealing with life-threatening illnesses. I told her that this was a life threatening illness. She informed me that the Ronald McDonald House was a quiet place. She worried that my child might wake or disturb the other children who were sicker than my child. After this final no, I asked if she had any alternatives for us. She sadly had no direction for me to go.
At the time, I was angry that an organization like this could turn away my child and I in our hour of need, but I did not contact McDonald's headquarters then because I was solely focused on getting my daughter stable.
This story has a happy ending though. We went to the local Ramada Inn where we were taken very good care of. The receptionist made sure we had the same downstairs room our entire stay there. This was intentional on her part since we gave up our "home away from home" on weekends while we went back to our regular home to practice the skills my daughter was learning. This receptionist made us feel at home in other ways as well. She genuinely had the gift of hospitality. Additionally, members of our church learned of this added expense and generously donated towards it and our gas money for weekend trips home.
Ending the stigma of mental illness begins with people like me telling our story so that others might have a better experience than we have had. I hope in the near future that organizations like McDonald's will do a better job of servicing children like my own. I really don't fault the social worker who told me no just like I didn't find fault with the cashier. Both of these individuals were just doing as they had been instructed to. Those in charge need to be educated more. That is precisely what I have done today.

3/30/15
Read about my follow up with the director of RMHC in San Diego here.

***A copy of this post is being sent to RMHC.

What Does Stability Look Like?

For a little over a year my daughter has been experiencing the longest period of stability in her 10 year old life.  Her father and I couldn't be happier.
A question I hear over and over is, "Is stability possible?" Some people believe "Stable is a place where horses live." When Princess was so unstable due to her mood disorder, I knew that stability was possible but it sure seemed a long way off. I also believed that stable was more than just a place where horses live.
Before stability came to live at our home, things were pretty chaotic. Even though we tried really hard to set limits and keep a structured environment, the littlest thing could trigger a meltdown of epic proportions. Sometimes we knew what the triggers were but other times we walked on eggshells. It was not very fun to live at my house.
Then Dr. Wonderful prescribed Amantadine. About the same time, Princess started at a Therapeutic Day School. Those two things combined have helped my daughter achieve the level of stability she has today. There is still the occasional day where Princess will have a meltdown but those days are less frequent. Additionally the duration and frequency of the rages have diminished.
When I ask my child to pick up her clothes, she does so. When I ask her to help with dishes or laundry, I may have to ask a second time but she will complete the tasks. When it is time for homework, Princess gets right to work with very little assistance from me. When it is time to stop a preferred activity, my daughter stops. If my daughter makes a poor choice that requires a consequence, she accepts the consequence. Recently Princess got upset about something my knight was telling her. She didn't like what she was hearing but she willingly took a cool out in her room until she was calm enough to rejoin the family. On that same day she recognized what she was doing and said, "That was an outburst. I'm sorry." Tonight as she and I were running errands for Christmas, Princess asked me if we could go home. She's learning to listen to her body. She knows how important it is for her to rest when she gets tired or overstimulated. That's a big step towards maturity.  Finally Princess has shown no aggression towards my husband or I in a very long time.
Before stability all of the above was not possible. Homework and chores were not expectations because they required too much effort on Princess' part. No matter what sticker charts or behavior modifications we used, battles ensued at the mere mention of homework or chores. We believe that just going to school and performing simple tasks really took their toll on Princess.
There are a few things I learned a long the path to stability. One was that stability is not achieved over night. We spent three years looking for it. Princess went through many many medication trials. She's had a number of hospitalizations. Another thing I learned is just as a child with Autism or Downs Syndrome has that condition but they learn to function in society with it, so does Princess still have her alphabet soup of diagnoses. Lastly we see that all of the things that were making her act out have calmed down quite a bit.  However, I do find them lurking in the shadows. We are ever mindful of them.
I have no idea how long this period of stability will last but for now I am enjoying it. My knight and I are living in the present. When and if Princess becomes unstable again, we have hope that it will end because we've seen stability and we know how wonderful it is.

*Please note: This is my family's experience. Yours may be different.
Additionally, do not stop or start any medication without the advice of a licensed doctor.