A beautiful, bright baby with big blue eyes, Chloe had a quick smile that drew everyone’s attention. Although she was an active baby, she adapted to a routine and was fairly easy to soothe when she got upset. When I was pregnant with our second daughter, I noticed that Chloe was willful but my husband and I were not overly concerned about it. But after Sophia was born, 18-month-old Chloe was quite jealous. She often whacked the baby on her head while I was breastfeeding, knowing I couldn’t respond.
Jeff and I started to notice that her behavior seemed to be different from other children when she was three, when we enrolled her in a local Montessori preschool. The teacher told us that Chloe didn’t follow instructions well during circle time, and she never played with other kids. During recess, she said, Chloe always retreated to the corner of the playground with the school bunny and, when she did interact with the other children, she didn’t know how to share and get along with others—a problem that would follow her through her elementary school years.
After a few months, she cried hysterically when I dropped her off at the Montessori school. She desperately clung to me when I tried to get out the door, and then I would drive away, an emotional wreck, balling all the way to work as I wondered what we were doing wrong. Feeling like we couldn’t continue to leave her there as a distraught wreck, Jeff and I finally decided to pull her out of the school during a winter break. Then we felt that we had failed as parents because we had given in to our four-year-old child.
As she got older, Chloe’s tantrums continued and intensified, and we did not understand her needs or know how to handle her unmanageable mood swings and rages. The “old school” parenting skills that we had grown up with didn’t work with Chloe, but only seemed to make things worse. Always on the brink of crisis, we felt helpless.
I had my suspicions early on that Chloe was struggling with a mental illness but we didn’t take action until her first grade teacher recommended that we have her evaluated. In a parent-teacher conference, the teacher told me that Chloe’s eyes were glazed over during lessons and she needed the teacher’s one-on-one guidance for all class assignments. She was certain that Chloe didn’t comprehend the information during instruction to the entire class.
On the teacher’s recommendation, we visited Chloe’s pediatrician, who referred us to a psychiatrist. Chloe was soon diagnosed with bipolar disorder and ADHD. The doctor prescribed medication to help stabilize Chloe’s moods and to temper her rages, and the medication helped on and off but it still seemed as if we were on a constant roller coaster with her moods.
After a few years, we switched doctors and the roller coaster of different medications—and Chloe’s rages—continued. Desperate, we eventually took Chloe to Portland, five hours from our southern Oregon home, for third and fourth opinions by yet another psychiatrist and psychologist. The psychologist determined that Chloe was healthy and that we, as parents, were making up issues that she didn’t have. But the psychiatrist diagnosed Chloe with Asperger’s syndrome. While the psychiatrist recommended specific treatments, Chloe’s pediatrician disagreed with the new diagnosis. We felt defeated and frustrated, and didn’t learn until much later that Asperger’s is often misdiagnosed and frequently has co-morbid disorders.
As the weeks, months, and years plodded by, we felt increasing despair. Disabled by anxiety and depression, Chloe often refused to get out of bed and, when I tried to get her to school, she cried uncontrollably. By sixth grade, she attended school about 30% of the year. When she did go, I often had to attend with her for support. She was unable to manage anxiety, break down assignments, or communicate and socialize with peers.
At the beginning of her sixth grade year, we learned about a day treatment program close to our home that contracted with our local school district to provide mental health youth services. I contacted the director and we toured the program. Since we were told by the agency that our privately insured daughter wouldn’t be referred to the day treatment program by our school district (“it was only available to Medicaid kids”), desperate, we offered to pay them $4,000 per month. They agreed initially but eventually called us back to say they couldn’t accept Chloe’s admission to the program. It was inferred that because they had such a large contract with our school district, the situation could cause potential legal issues for the district because it’s illegal to deny privately insured children day treatment education services. Demoralized and angry, we worried over what we imagined Chloe’s future would be.
At home, we were prisoners of our own house. Sophia served as Chloe’s minion and, often, her punching bag. With her foul language, tantrums, and sometimes threats—with weapons—Chloe had alienated herself from our neighbors. And she wasn’t maturing, though she was growing. She had gained nearly 40 pounds as she spent her days sleeping until almost noon, and then eating and playing video games until the wee hours of the morning.
At the end of Chloe’s sixth grade year, I shared my story with a colleague who told me about an alternative charter school that her grandson attended. I immediately called the school and Chloe was placed on the list to start seventh grade there. Though she was reluctant and anxious about starting at the new school, I was relieved and thankful that the charter school understood her special needs. The teachers and administrators worked with her to maximize her learning capabilities and, for the first time ever, Chloe actually liked her school. It was a huge accomplishment!
She was still guarded with other children but, by the end of her seventh grade year, she trusted the school and the kids enough that she made a few friends, even inviting them over to our house. But her new school wasn’t enough to change her warped perception of life and the dysfunctional behaviors she had used over the years to survive. She was still skipping school half of the time. And she was still ruling our household.
After visiting a residential treatment center four hours north of our home, Jeff and I decided to send Chloe to treatment in February 2014, when she was 13 years old. It was the most difficult decision we ever made and Jeff and I questioned it over and over. If not for the encouragement and support of our own therapist, I’m not sure we would have been able to go through with it. Her psychiatric pediatrician prepared the paperwork and made the referral. We just had to wait for an opening in the facility.
The treatment center finally had an opening on the same weekend Chloe and I had planned to drive down to California to see my nephew graduate from high school. We used the California travel plan as a ruse and, with my mom along for the ride, headed north to the treatment facility instead. Chloe’s doctor had prescribed a sedative to add to her morning medication cocktail, which put her to sleep for most of the drive.
As we neared the treatment center, Chloe woke up. She didn’t notice our location and was happy as a clam coloring and watching a movie to pass time. But when we got to the facility and she started to comprehend what was happening, it was awful. I felt guilty that I had totally betrayed her. The one person she trusted and relied upon the most was locking her up and leaving her with strangers. I was glad to have my mom with me on the drive back home, because I was a blithering mess.
After a month in treatment, Chloe didn’t seem to making the progress that we had expected, so Jeff and I moved her to another facility closer to home. Within days, Chloe began to thrive and show growth and improvement. We were encouraged. Over the next six weeks at the new facility, Chloe learned new skills to cope with her emotions and she seemed to have a new sense of responsibility and accountability for life and her actions. Every weekend, she was able to have home visits with us, adding days as the weeks went by. By the end of summer, we decided Chloe was ready to come home to enjoy two weeks of summer break before school started up again. She relished her vacation.
The first year after treatment, Chloe was very successful. She attended school nearly 100% of the time, was taking responsibility for herself, helped with chores, followed our rules and a schedule, and seemed happy about herself. Even her teachers remarked about the change in Chloe.
When 9th grade came along, Chloe continued to make strides in her academics but began to socialize with friends that were neither stable or healthy. By January of her freshman year, Chloe had been set up for a fight, which rocked her trust with her “friends” and knocked her off her path. By the end of January, she had dropped out of school and had taken up some risky behaviors with kids we didn’t approve of. After a second time of Chloe getting jumped and beat up, Jeff and I realized we needed to intervene and we sent her to a private treatment center in Utah. You can read more about that story HERE.
Mental illness treatment reimbursements for the privately insured are messy at best. Wrap around services that are often available to Medicaid kids and individuals are not provided to privately insured people, and health insurance carriers seldom reimburse for comprehensive mental health programs, leaving many middle class families in crisis. Our family pays nearly $20,000 annually for health insurance that doesn’t reimburse Chloe’s mental health residential program. Consequently, on top of our annual insurance premium, we’ve paid over $260,000 out-of-pocket for her care, while fighting our insurance carriers over the past two years. Without our parents’ support, we wouldn’t have been able to send her to the program that literally saved her life!
We have learned a great deal with her illness. I am writing my book to share our family’s struggles and triumphs, as well as the education, knowledge, and resources that we have learned and which have helped us along the way. I hope it helps other parents and families who find themselves isolated and on the scary and mysterious roller coaster of loving a child who suffers with mental illness
My hope is that, one day, our society will embrace mental illness for what it is—an involuntary disease of the brain that must be managed by medication and therapeutic guidance, just like any other chronic diseases of the body. I hope you will join me and others in our fight against the stigma and shame associated with mental illness.