Sound Familiar... Our Child Anxiety Journey
It has taken me years to be at a point emotionally where I can share our detailed story clearly. I have so much I need to share because I am not the only mom dealing with a child with severe anxiety, but most days I feel incredibly lonely and often think that we are the only ones. I hope to feel better once it is written and shared, but most importantly I hope I reach at least one person who can read this and say to themselves..."wow, it is not just us." "We are not alone in this battle."
My Daughter, J
The most important person in our story is my incredible 13-year-old daughter. If someone asked me to describe my daughter, I would say: wicked sense of humor, stands up for those who are picked on, would pick an animal over a human any day, kind to anyone she meets, finds a way to compliment our server, check out clerk at the store, or any other person in a service position, extremely extroverted, has a beautiful voice, loves to snuggle, stands up for her brother, any many more. (Click here to read more about my amazing daughter.) However, when anxiety takes over everything wonderful about my daughter disappears. She becomes a self-conscious, needy, quiet, child. Each time this happens, I mourn the loss of my daughter. While this may seem extreme to many of you, imagine having this ray of sunshine suddenly leave you and you are left with the dull shell. This is what happens each and every time extreme anxiety takes over her sweet body.
Birth to Three
Looking back, my daughter has always had anxiety, only we didn't realize it at the time. When I was pregnant, I was teaching a class of 20 kindergartners. I (naively) thought if I can teach 20 5 -year- olds, parenting will be a piece of cake. It is only 1 child. WOW...the stupid things we say before we have kids! (Add to that...my child will always wear cute clothes with matching bows from Gymboree, she will never chew gum or drink pop, she will never sleep in our bed, the list goes on and on!) Actually, my daughter was an amazing baby and toddler...she was happy, outgoing, funny, talked early, smart, silly, slept well, traveled well...everything you dream of when you think of your child. I returned to work 8 weeks after I had her, leaving her with an amazing woman who watched a few kids in her home. My daughter was always happy when we dropped her off and happy when we picked her up. My favorite memory happened when my daughter told us that she needed to go to Target and get a purple pair of sandals because "everyone has a pair at Lupe's (her babysitter)". We took her and bought the shoes. When she went to the sitter's the next day, we told her sitter the story and she told us that no other child has purple sandals. Julia was not even 2 years old yet but already knew how to get things she wanted!
All that happiness and enjoyment changed when she began preschool at the age of three. Looking back, I wish I would not have felt such pressure to send her to preschool simply because she was three. She began full-day preschool, which was located in the same building as the elementary school in which I taught. She cried and held onto me EVERY morning when it was time for school. Many days, she cried throughout the day...often I would look out and see her standing next to the teacher, crying on the playground. It broke my heart but I truly believed, in the beginning, she just needed time to adjust. I quickly realized that adjusting was not going to happen. I spoke with her doctor, who assured me this was not abnormal. We took suggestions from anyone who offered...we sent her to school with her blankie, a special stuffed animal, a picture of us, bribes for a new toy if she didn't cry, anything that we thought might help. NOTHING helped.
Inside, I knew it was not normal though. I had taught school long enough to understand that this was far beyond simple separation anxiety or adjusting to a new situation. I also had always thought that if something was really wrong, we would see it all of the time. We did not see this "anxiety" except at school or school events. She did not interact with kids, nor did she bond with her teacher. That year, she was invited to birthday parties. We would take her and she would sit on my lap and cry, even when I tried to interact with her and the other kids. This never happened when she was with the babysitter her first three years...there, she interacted with all the children and the adults. The school counselor reassured me that she would get through this. She introduced me to the book, "The Highly Sensitive Child" by Elaine Aron, which I read the first evening I had it. Without a doubt, it described my 3-year-old. I began by referencing that book daily. I took suggestions, shared information with her school, read pieces out loud to my husband, etc. While it opened by eyes, it didn't really help solve any of our problems. It did help me understand her situation. I slogged through each day, broken-hearted that I had to leave my child in such a sad state. I counted the days, hours, and minutes until weekends or breaks so that my daughter could be her happy silly self again, without the anxiety caused by being away from us. I used that information, seeing that it was the best guide I had at the time until she was 5 1/2 years old...that is when we realized we were in for something much bigger and more serious.
Anxiety and Emetophobia Hit
My daughter entered Kindergarten with separation anxiety but it had improved slightly since preschool. She still cried and clung to my leg but once separated and engaged in school, she interacted with friends and teachers. She began school knowing her letters, sounds, numbers..slightly above the average entry-level kindergartner. She was proud of her work, excited to read to us at night. As busy working parents, we spent as much time with our kids as we could. They loved to run around outside, explore nature, my daughter loved to sing, Taylor Swift being her favorite performer during this period, and read books at bedtime. She was not afraid to go upstairs alone and would be happy and outgoing on days with us. She really was well behaved and very inquisitive...often noticing details that we would never have seen. Life as we knew it changed a few days after Christmas of her kindergarten year. She was laying on the couch, shortly after waking up, watching cartoons. She began panicking that she had to throw up, so I assumed she was sick and ushered her into the bathroom. She kept yelling that she was afraid to throw up. We sat there for a while with her panicking but no signs of sickness. (As a note, she had only thrown up once before, in September of that year while at school. Nothing seemed out of the ordinary...throwing up is never fun but it wasn't traumatic as far as I could tell.) From that moment on, the fear escalated. She continued to panic about throwing up...ripping her shirt off and refusing to put it back on because the feeling near her throat/neck made her think of throwing up. We could not get her to calm down or explain what she was thinking/feeling. She wouldn't leave our side nor would she leave the house with us. We honestly had no idea what was going on. We hoped that she would go to bed that night and feel better in the morning. That did not happen! We began researching information and found nothing. I reached out to the school counselor, hoping to get a direction in which to turn. As Christmas vacation came to an end, we had to return to work/school. Our daughter was in a constant state of panic and would not wear a shirt so there was no way we were getting her to school. I met my father halfway between our house and his house (she was very close with her grandparents and comfortable with them) and he took her home with him for the week with the hope that a calm week would help her relax. At the end of the week, she came home and was slightly less anxious but the sweet, happy girl was gone. She was anxious and sad every moment. She did return to school but clung to her teacher and stopped engaging with students. She did not participate in classroom activities, her mind completely focused on her fears. We found a counselor who offered some suggestions but it did not provide much relief. We met with a hypnotist to see if it was an option. I had read that hypnosis can change the path of thoughts, getting rid of an OCD thought. We decided it was not the best option for our 5-year-old. As time continued, she seemed to talk less often about the fear of puking, her personality slowly returning.
She started first grade at a new school. We had to walk her into the teacher every morning, crying as we left her. She did participate in school slightly more than before but we could tell early on that her anxiety was impeding her learning. She did get sick and throw up once during first grade but she didn’t head into a tailspin. The year continued slowly but she made it through. We had a great summer with little anxiety that year. She started second grade, having to be walked in and crying. We noticed the anxiety slowly creeping back in...more discussions and thoughts surrounding the fear of throwing up. She also started talking about hating school and not wanting to go. It was a struggle to get her up and out the door each morning. At that time, she was small enough that we could dress her and put her in the car. It was awful to start each morning with a sad child that you must send off to school so that you can make it to work on time. She often did not eat breakfast and my husband or I had to dress her and put her in the car. We found another counselor during this time who told us that the anxiety was not that big of a deal...she was manipulating us to get wants she wants. More or less, our problems were based on her behaviors. I absolutely believe that she had some behavior issues that she could have controlled better but that the underlying issue was no doubt anxiety. I freely admit that we coddled her a lot because it was so heartbreaking to see her so anxious. We would do almost anything to make her happy. We also realized quickly that we had to pick our battles, knowing that certain things were not worth the fight. Looking back, I see the problems with coddling but at the same time, what research shows as best practice can be very difficult to do during the day to day moments of life. At this point, we were making it through each day but we knew life could, and should, be better. Little did we know how much worse it would get, beginning December 3 of her second-grade year.
My Worst Fear
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!
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 teacher's 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, tics, 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 on 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. (Click here to read a brief overview of IOP.)
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.
Ups and Downs
The program was amazing and changed our lives. (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 now 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.
With the success of IOP, 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. During the summer between 2nd and 3rd grade, we moved from a small Colorado down on the plains to a suburb of Denver in order to be closer to the doctors and therapists J was using, meaning we had to change schools. We met with the new school prior to the first day. The principal completely blew us off as overprotective parents with a needy child. We were hopeful that J would settle in and enjoy school as she did at the end of the prior year. The first few days started strong but quickly fell apart. J started to get anxious during the day and ask the teacher for some reassurance. The teacher was completely unwilling to see J as she was, instead of making it clear that J was an annoyance. J sensed her teacher’s frustrations and her anxiety quickly spiraled out of control. With her anxiety at an all-time high and an uncooperative school, we enrolled her in another version of IOP that would help her with schooling. I had to miss work in order to transport J to this program. Because I was working in a new school district, I was not covered under FEMA and after missing 15 days of work, I was told I had to either quit or not miss any more days of work. Needless to say, I had no choice to quit. And just like that, we went from earning 2 incomes to one.
Since I no longer had a job, we made the decision to pull J from the second IOP program and focus on outpatient therapy and homeschool with me for that year. She made vast, but slow, progress over her 3rd grade year working with me at home. It was during our time working together closely that I suspected she is dyslexic. She was tested and diagnosed as having dyslexia, dyscalculia, attention issues, and executive functioning deficiencies. This added a new level to my research on ways to help her succeed both in school and in life.
The summer between 3rd and 4th grade was an exciting time for our family. J began spending time with neighborhood children, even spending the night a few times, having an interest in activities, joining the rec soccer league, and truly returning to her “non-anxious” self. Our gratitude for the small moments was abundant due to all of the momentous “firsts” J was experiencing. Throughout the end of the 3rd grade school year and the summer before 4th grade, we met with the neighborhood school putting a structured, consistent plan in place which would allow J to return to school with as much success as possible. For J, being in school, rather than homeschool, was in her best interest. She desperately needed daily interactions with other adults and children.
Finally, School Success
We met with the Special Education Director for the school who had a strong grasp on how to handle anxious children while at school. (This will once again prove to be the difference between success and failure at the school level...a school employee who has an understanding and experience of working with children with mental health issues.) With our guidance and input, she put together a plan for J to attend school full day starting on the first day. J would be surrounded by familiar, supportive staff with opportunities for breaks as needed. She was also given motivational tokens to reinforce working through her anxiety when it was triggered. From day one, we knew J would be successful because of the adults around her. That year was a turning point for J as she finally enjoyed school, developed strong friendships, and even sang a solo during the end of the year talent show. Academically she was behind but she didn’t seem to be bothered by this. We were so happy to see her thriving emotionally that we did not place an emphasis on academics. We felt that this would come in time. Looking back, we should have celebrated her emotional successes while still finding ways to support her academically both at school and at home. Her academic struggles slowly caught up to her and led to a disastrous year in 7th grade.
Disaster Strikes AGAIN
Having 4th-grade end on such a high note, made her 5th-grade year even more heartbreaking. The Special Education Director that was instrumental in J’s success left the school for another position, leaving the school without an experienced, understanding replacement. The new coordinator of J’s IEP called me on the third day of school and told me, “She is much more challenging than I expected. I thought she just had some anxiety.” It was at that moment that I knew we were headed for disaster once again. The school refused to follow the plan that was in place last year, as it was quite generic so it could be interpreted loosely. We fought like hell for more support and structure in her day but had to walk a fine line because my husband was employed by the same school district. We could not risk anything happening to his job, seeing that he was the sole provider for our family. The worst moment of that year was when J came home from school crying because Mrs. Smith (her name has been changed) told her that because of the time she spent helping J during the school day, she was unable to get her work completed and had to come in over the weekend. This meant that she missed time with her own son. Yes, this really happened. A special education leader told my child that her having to work on a weekend was J’s fault. Given how unresponsive the school district was to our needs, we felt we had to make changes in our life. We made the very difficult decision to move to Ohio.
Best Year of our Lives, Followed by the Worst
J entered 6th grade with a whole new attitude. We had planned to enroll her in a private school but she begged to go to the public school and be with all of the neighborhood kids The special education department was well respected and provided us with support prior to the start of the year. J had the most amazing year of her life. For the first time, our family felt happy and carefree. J was attending all classes, completing work, sustaining a busy social life, and participated in the Middle School production of Grease. If you remember, J’s biggest fear is throwing up. While she had moved past most of her fears, it was still present Her biggest fear happened on the afternoon of the very last day of 6th grade. I couldn’t believe our terrible luck. That summer was devastating. She was back to not leaving the house, crying throughout the day, refusing to eat, cutting off contact with friends, and not leaving my side; at times, sitting outside the shower while I showered. She had not been in regular therapy since moving to Ohio because she was doing so well and the cost was high. We had visited with a counselor every few months to stay in touch but did not think that she needed it on a regular basis. (My biggest regret is not providing her with consistent therapy at all times.) The summer and her 7th-grade year were truly a nightmare. She fought going to school every morning, some days we left her at home because we couldn’t get her in the car. If she made it to school, it was a battle to enter the building, then she would sit in an intervention room and worry all day. We as parents had no idea what to do, the school was lost, we went through various medications seeking help but only finding horrendous side effects Now that she was older, everything was even more challenging than years past.
Imagine a glass vase getting a slight crack in its outer layer. Over time, through movement and weather, the crack reaches the inner layer, then spreading over more space, until it cracks into large pieces. Those pieces lay on the ground, slowing breaking into smaller pieces which eventually turn into glass like dust...no longer recognizable as the vase it once was. That vase is my daughter. She started the school year nearly intact and ended the year as a speck of dust with no light in her eyes, smile to her face, or hope in her heart. As parents, we were not quite dust, as we knew we must stay “together” for our children, but we were broken and being held together by cheap scotch tape.
I wish I could pinpoint how we got from the small crack to a speck of dust, but it is impossible. It is a broken insurance system, under educated (pertaining to mental health) teachers and school administrators, long hospital wait lists, negative stigmas, and the unique traits of mental health shown in each person.
In April, we finally found a counselor who, for the first time, gave us hope. She recognized how broken J was, and how hopeless, scared, and traumatized our family was. She had the experience and education to start the process of putting us back together. Most importantly, she gave us hope. She is honest and kind. She is part of our recovery team, helping us understand anxiety and how we can be healed. In June, after a 6-9 month wait, we were finally able to meet with a child psychologist at Nationwide Children’s Hospital. He too was compassionate and understanding, offering treatment and education on our path to healing. Together, our counselor and doctor, are giving us the chance to heal, allowing J to return to school with the support that both she, and the teachers need. It gives my husband and I the chance to regain our footing as parents.
I look into J’s eyes and I see the sparkle, I can hear her laugh, and I can feel that she has hope for a better life than this past year presented her. She talks about what she wants to be when she grows up, she takes pride in her appearance again, she hugs us freely. Most importantly, she accepts that she will always have times of great anxiety, but is gaining the confidence in herself to deal with those moments when they arise, allowing her to be in charge as opposed to her anxiety leading the way. There is nothing I want more for my children than happiness. I have no expectations of what leads to their happiness...I just want to see them happy! Far too much happiness was taken from us over the course of the past year. Each moment of happiness we have now is a gift we do not take for granted.
Our future will be filled with bumps but with knowledge, experience, an optimistic support system, and hope, this year will be one of growth and gratitude. She is attending school, although she is not regular entering the general education classes, rather staying in the intervention room. (View her IEP plan here.)
We will use our story to lift others and help end the stigma, helping ourselves and others find joy rather than anxiety.