We Must Have Experiences Before Forming Opinions

The other day my mother sent me a message on Facebook letting me know that she “nearly ran her cart” into my friend Jane (her name has been changed).  Jane is someone I had gone to high school with then stayed in touch with over the years, visiting her when I was in town.  I would not consider us close friends, but I would consider her a friend.  During the past presidential election season when it appeared that Trump was a real contender, I saw something “Pro Trump” on her Facebook page and was instantly disgusted and made the quick decision to unfriend her.  (Stay with me here…this is not a political post and I promise it relates to mental illness.)  I felt such frustration with anyone who mentioned anything positive about Trump because he went against all that I stood for.  I thought to myself, how can Jane possibly believe these things about other people.  (This particular article was about illegal immigrants and how they did not deserve any of our resources or help, particularly in schools.)  Has she ever spent time with an illegal immigrant or their families?  It got me thinking about how many times people make a decision to support or not support a group of people or idea based on a thought, something they heard, something they saw in a movie, etc but not based on experience.  As a experienced teacher, I have spent years teaching illegal immigrant children.  I have put a name to a face, seen the love between parent and child, seen the joy of learning.  I have received heartfelt thank yous from parents because they know that their children will have a better future than they have.   These parents work hard, study with their children, and make school a priority.  How can one judge without this experience.  I have had Muslim families in my class.  I have observed their traditions.  I have seen them struggle to be their authentic selves in the middle of American life.  I have a gay uncle.  I have spent holidays with him and his partner.  I have seen the love between two successful people who simply happen to love each other…and happen to be men.  How can you judge without experience.  I have practiced lock down drills (and one real lock down) praying that the teacher upstairs keeps my child safe, the teacher across campus keeps my daughter safe, and my husband across campus is safe all while knowing that each parent is praying that I keep their child safe.  How can you talk about gun control without experience?  I have paid a $23,000 hospital bill because my daughter was in a hospital program for mental health prior to Obamacare and her private insurance did not cover mental health.  If you haven’t see the benefits of Obamacare, how can you say there is nothing good about the program.  (Just to explain, Obamacare made coverage of mental health with private insurance a requirement.)

The idea behind this post is to show that we all must use our experiences to form our thoughts and ideas.  What we think we know about something is seldom the same as what we experience.   Just as I have formed mostly positive opinions based on my experiences, someone may have formed a negative opinion based on the same experiences I had, but they have the experience to explain their opinion.  Dealing with mental health is an experience we all have, whether it is within our own family, someone at work, a neighbor, or a stranger at the mall.  Society is quick to judge those suffering in a highly negative light.  Would you judge someone with MS that same way?  How about someone with Alzheimer?  Probably not.  We must start talking about this illness.  We must start sharing the truths rather than the myths.  We must start asking questions and asking how to help.  We must make sure that people who are making laws, deciding appeals through insurance companies, or working with children in our schools all have experiences with mental health to “show” what it really is rather than what they have seen, heard, or read about.

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Mother’s Day with a broken heart

I sit in the car writing this as I cry reading all of the Facebook posts about Mother’s Day.  It is such a hard day when I am torn about loving the fact that I am mother but hating the way motherhood is unraveling at a rapid pace. J is experiencing boughts of terrible anxiety again, to the point where she isn’t functioning. As a mother all I want to do is wrap my arms around her and make it better. However, no matter what I try to do to help, it is never enough. Today, after listening to J struggle for nearly 5 hours while trying to enjoy picnic at the park, watching my son play lacrosse, and attempting to go to dinner, she told me that she never wants to see me again. I understand that when people are hurting they lash out at those who make them feel safest.  My logical brain helps ease the sting but my heart breaks into pieces at the same time.  Mother’s Day, for some of us, isn’t all flowers and hugs. It is a reminder that the dream of being a mother isn’t how we dreamed it would be. We mourn for the motherhood we pictured and the children hidden beneath their illness. The greatest gift would be to see my daughter’s eye sparkle with laughter…and I know this is in our future…the challenge is holding onto that hope while deep within the daily trenches of mental illness.

Always Questioning “how to help”

I often find one of the hardest parts of anxiety is that a child with extreme anxiety “looks” “normal” to the outside world, therefore, people are quick to make judgements, such as having bad behavior, being bratty, or simply weird.  Having anxiety makes our children feel stupid, self conscious, and strange. Many times, extreme anxiety is just one of the issues our children have. For us, our daughter has dyslexia and dyscalculia. She has been labelled as “ADHD” by different doctors but it is hard to tell what is ADHD and what are symptoms of the anxiety.  She has weak executive functioning skills, but is that due to dyslexia, ADHD, or anxiety. Is a combination of all three? How do we treat something when we really do not know the root cause? How can we help the dyslexia when we struggle to get her to school? How do we help her with executive functioning skills when she spends her entire class period in a complete state of anxiety that there is not way she is thinking about her school responsibilities?  

 

Intensive Outpatient Therapy

IOP Denver

As mentioned in the last post, I wanted to highlight the program that was used successfully with J at Children’s.  I am by no means a doctor or a professional of this treatment, but I want to offer insight into what has worked with our daughter in the hopes that someone with see hope for their child.  

J was in a program that met on Mondays, Wednesdays, and Thursdays from 3:30-5:30.  Monday nights focused on insights into anxiety and how to treat it. Parents were in one room and children being treated were in another room.  We were very fortunate that we had friends and family watch our son on the nights that we were away. We left our town at 2:00 and returned around 7:00.  They made for long, stressful days, but well worth it! In our program, there were 5 other children dealing with varying degrees of anxiety. The clinicians spent time teaching parents about how anxiety affects children and how we can help them deal with their issues.  It was incredibly eye opening and helpful to gain an understanding of what goes on in her head. Children and parents where taught FEAR steps and coping thoughts as a way to combat the negative, irrational thoughts that arise during feelings of anxiety. We were to use what we learned throughout the week at home.  Wednesdays were spent as a family with one counselor assigned to J. Together, we created fear mountains, where J noted things that were least anxiety provoking up to things that created high anxiety. Using steps taught to us, she began overcoming small fears as a way to move up to overcoming large fears. It is a slow process but slow and steady wins the race!  We included her school, and mainly her teacher, in helping us work through these fears. It was wonderful to see her progress over the 7 weeks that we were in IOP. Thursdays were spent doing Yoga or art as a family as a way to deal with anxiety. It was nice to relax and chat with other kids and families dealing with similar issues. As the end of the 7 weeks, J graduated from IOP and continued to see her therapist once every week or two.  I could write for hours on the treatment. I simply want this to serve as a opportunity to show that programs exist at many children’s hospitals around the county. I highly recommend beginning your search online and progressing from there.

There are countless people to attribute J’s success to:  We started 2013 off at the lowest point of our lives and ended the summer of 2nd grade (May 2013) and the highest point.  J finished 2nd grade nearly on grade level, entering school independently, and completing work that was asked of her by a teacher.  She began going to friend’s houses to play, and participated in local programs during the summer. These were all “firsts” for her and our family.  It was exciting to see the REAL J shine throughout the summer before 3rd grade. We would not have gotten to that point without the amazing staff at the schools in which my husband and I had worked, friends in and around the community, the staff at children’s hospital, our family, and the staff of J’s school.  

My next post with highlight how quickly everything fell apart due to a few adult’s perception of anxiety and their inability to see the “realness” of anxiety.  

 

Here is the link to the hospital we used.  I hope it gives you insight into the program and may guide you to other programs near you.

https://www.childrenscolorado.org/doctors-and-departments/departments/psych/

 

Treatment- Round 1

I had no idea what to do or where to turn when she told us that she would rather die than be scared all of the time.  Immediately, I began searching the internet (again) for resources dealing with SEVERE anxiety in children. I knew that Children’s Hospital Colorado was the best medical treatment option but did not know that they had an anxiety department… I had no idea that my daughter’s struggles were so prevalent that Children’s Hospital had a program specifically for children who have anxiety that impacts their ability to attend school and function in life.  I filled out over 30 pages of questions and faxed it off to their anxiety program the Monday after winter break. (As a side note, I had contacted Children’s Hospital a year before, but was told, after a phone interview, that my daughter’s anxiety was not “severe” enough to be a part of their programs.)  While we waited to hear back, we tried several homeopathic remedies in the hopes of calming some of her anxiety. We tried giving  fish oil, magnesium, and inositol. Nothing seemed to calm her constant worry. She woke up nervous, stayed in a constant state of anxiety ALL day, and slept off and on through the night.  Throughout the day, she asked at least 100 times if she was going to puke, stayed by my side or her teachers side nearly all day, did nothing that gave her enjoyment, and looked truly sad all of the time. It was torture. In addition to her constant need for reassurance regarding her fear of throwing up, she began showing signs of OCD with unusual rituals, ticks, and compulsions.  It was incredibly bizarre and scary.

About a week after submitting the paperwork to Children’s Hospital, I was contacted for a phone interview to determine whether my daughter would be a good candidate for the anxiety program.  Finally, we heard that she had been admitted into their Intensive Outpatient Program (IOP) for Anxiety and School Refusal. It was a 3 day a week program that was scheduled to last about 6 weeks.  We were to go to Children’s Hospital Mondays, Wednesdays, and Thursdays for 2 hours each afternoon. At this time, my husband and I were both educators who worked during the time of the program, and we also lived 1.5 hours – each way– from the hospital.  We realized it was our only hope. We spoke with our school administrators who completely supported our need to leave work early in order to help our daughter. We started the program on January 7, 2013.

An additional stress during this time was the fact that my daughter had individual health insurance, and her insurance company limited the number of mental health visits per calendar year to 20 visits. This program alone would be 21 visits, plus an intake appointment, and several visits with a psychiatrist.  The program runs around $800 per session/visit. As if the stress of a sick child is not enough to deal with, we began battling with the current insurance company while searching for a new insurance company that would cover her with her pre-existing condition.  (Since this time, there have been changes to coverage of mental health care and pre-existing conditions.  More about insurance in another post.)

The program was amazing and changed our life.  (I will explain the basics of the program in the next post.)  As part of the program, we were introduced to 6 other families who all had children facing similar struggles.  It was emotional to hear other families describe what their life was like. Until that first meeting, my husband and I felt completely alone in our struggles.  We know realized that we were not alone. That was a small piece of hope for us. It also showed our daughter that she was not alone. She loved meeting other children that could relate to her.  As part of the IOP program, we met with a child psychiatrist for the first time. This psych was the first to “diagnose” her with anxiety and OCD. I was originally surprised by the OCD diagnosis, as I always thought it was checking and rechecking.  Now I know there is a lot more to OCD than what we commonly hear about. Until this point, I had been hesitant to start her on medicine. I was so overwhelmed and scared by the information about drugs for mental health. At the encouragement of her psych, we started her on a low dose of Zoloft.  I asked a lot of questions to anyone I knew with a medical background. Most people agreed that medication AND therapy are the most effective treatments of anxiety for children. Time would tell if this worked best for our daughter.  

We all need a smile

Given the topic of this blog, it can be quite sad to read.  I want to make sure to share joy with everyone.  Here are some of my daughter’s greatest qualities:

  • She has the greatest laugh..you cannot help but smile when you hear it
  • She does a spot on Miranda Sing’s impression
  • She is right there to step in and stand up for the underdog
  • She is a terrible frisbee player but the life of the party when playing Kam Jam
  • She will do nearly anything to help an injured or lost animal
  • She loves all babies and could spend hours holding them
  • She seeks fairness and kindness in the world
  • She is her brother’s biggest cheerleader, even though he finds her quite embarrassing
  • She will do anything to avoid running
  • She does a great English accent…with the hopes of meeting a true Englishman to marry so they can spend their time talking
  • She is clumsy but loves to dance even when she often loses her balances and falls over into a fit of laughter
  • She notices the small details in the world around her
  • She is nosy..meaning she brings home great gossip
  • She could spend hours playing in water out in nature
  • She has an incredible sense of real world intelligence
  • She cannot seem to ever go straight on a paddleboard…only around in cirlces
  • She marches to the beat of her own drum
  • She will ask a baseball player for a ball just so her brother can be happy
  • She seeks comfort over style
  • She can delve into deep topics and carry the conversation
  • She has eyes that truly sparkle when she is happy
  • She has infectious enthusiasm for holidays
  • She accepts all people, regardless of their differences
  • She truly is one of a kind, making the world better for every person who is fortunate enough to know her

There are no words…

 

Imagine sitting across from your 7 year old daughter.  Her face is tight with fear and stress. She is rolling her hands around within the other hand uncontrollably because she is so nervous. Then she looks you in the eyes and says, “Mom, I would rather die than feel this scared all of the time.”  Remember she is 7 years old! I have no words. I walk around, pull her onto my lap and hold her as tight as I possibly can. Then I cry into her hair. I tell her how much I love her, how much I want to help her feel better. I promise her I will do everything in my power to take this awful feeling away from her.  I ask her to be patient while we figure it out. It was that night that I understood how incredibly serious our situation was. No longer was I going to allow a counselor to tell me things like, “well, some kids are more anxious than other” or “it really isn’t as bad as you think”. Trust me, it is bad!