STARTING A FAMILY
A bit about our family and our roller coaster called life. My husband and I were married for 10 years before we decided to expand our family from a four-legged kid to the real deal. Prior to kids, we had two successful careers, we traveled, spent time with friends and family, and we laughed daily. We never had a strong desire to have biological children; instead, we were drawn to the idea of adoption.
After researching adoption programs, we narrowed it down to South Korea. The babies are placed in foster homes and receive excellent medical care while waiting to go to their forever families. Almost two years after starting the adoption process we received the call that it was time to bring our baby boy home at six months of age. We boarded a plane, headed to Seoul, South Korea, and dreamed about our future as a family.
Ben was a healthy and happy little guy. We bonded immediately, it was love at first sight. Ben was engaging and inquisitive from the start. He was affectionate and loved to laugh. And boy oh boy was he smart; his first sentence was at twelve months of age – Papa drive Volvo. Soon thereafter he knew every make and model of all the cars and could spot them from a mile away. Ben was very sensitive to sound and sleep was optional (for him, NOT me). Yes, in hindsight we missed a lot of clues that should have raised red flags.
Being an only child, when we started the adoption process I felt strongly that we would have at least two kids. Two years after Ben came home, his brother Jack (not biological) joined our family. He was four months of age when he flew home; another healthy and happy little guy. Ben was (and still is) so proud to be a big brother.
Over the course of the next few months we did “typical” family stuff – visited with family, hiked and camped, and had dinner with friends. It was during this time that Ben developed some repetitive behaviors like patting his brother on the back and saying “moo moo mama mama”. When he heard music or would run around with other kids, Ben become overly silly with a maniacal laugh. He often missed the cue to calm down and move on. For two educated parents, we were still clueless. He was our perfect, and yes sometimes annoying, little boy.
OUR WORLD WAS ROCKED
That fall, at age three, we enrolled Ben in our local University’s preschool program. The kiddos benefit from highly trained faculty and staff as well as passionate students gaining experience as part of their degree requirement. After six weeks in the program, we received a call from the lead teacher asking if we could meet in person. The lead teacher and staff spoke to Ben’s endearing qualities before dropping the bomb shell … he was missing social cues, became easily dIsregulated, and struggled with basic transitions. They encouraged us to reach out to our district for an assessment and mentioned pursuing a neuropsychological evaluation. WE WERE DEVASTATED. Little did we know the roller coaster ride ahead of us.
Ben received over nine different diagnoses.
It is overwhelming when I put in words a summary of our next ten years. I often joke that we started at the beginning of the alphabet with Asperger’s Syndrome, anxiety, and ADHD followed by bipolar. From there we started jumping around the alphabet with OCD, Tourette’s Syndrome, a general mood disorder, and nonverbal learning disorder. At one-point borderline personality disorder was put on the table.
finding the “perfect” SCHOOL
Since preschool, Ben has been enrolled in ten different schoolS IN THREE STATES (over a ten-year period).
Experience has taught us to not get too attached to any one school. Ben spent kindergarten and first grade in our public school supported by a paraprofessional. The stimulating environment proved to be very difficult for him. He spent most of his time in the special education room removed from his peers. The school district agreed to send Ben to a private “typical” school that happened to have special education approval.
This school provides kids with a wonderful learning environment, small class sizes, and an inclusive community. In fact, Ben’s brother still attends the school and is thriving. During Ben’s tenure at this school, he was well supported by paraprofessionals and a behaviorist. Although he was loved by staff, teachers, and parents as well as included by his peers, the academic and social demands were becoming a challenge. Ben’s outbursts were increasing in verbal and physical intensity.
After four years, we made the difficult decision to pull Ben from this school and look for a therapeutic setting. Our other reason for changing schools had to do with his brother. Ben’s outbursts were affecting Jack. Jack was showing signs of anxiety and withdrawing socially. We felt strongly that he needed a school to call his own.
Finding a therapeutic school that was a good fit for Ben proved to be a challenge. During the next year he experienced four different placements. The first was for kids with developmental disabilities. Within six weeks we received a call … Ben is a smart and endearing kid who desires to have friends and be a part of the group; however, his mood swings and associated behavior are more than we are equipped to handle.
Starting to panic and wanting to keep Ben at home, we tried a therapeutic school for emotionally disturbed kids. This school accepts kids between the ages of 10 and 21. A large percentage of the population are court appointed. This was a horrible setting for Ben and one I deeply regret. Not only did Ben pick up impressive swear words; we are still dealing with the aftermath of how school disciplined kids. Six weeks in we all knew that this program was a poor fit.
Within six months, Ben went from a loving and supportive environment to two unsuccessful placements. In a full-blown panic, we started tutoring and hired an educational consultant. This led us to a gut wrenching decision to pursue a residential treatment program. Having tried the public school system, a private school, and schools for both development disabilities and emotionally disturbed children, and tutoring, we were at a loss.
After extensive research, we sent Ben to a residential treatment program across the country that specializes in helping children improve their ability to self-regulate. Ben was making progress at this treatment center and we implicitly trusted the team; however, he came home after a year. He was very homesick and in and out of the hospital. We were struggling with his medication and related side effects.
As I type this, Ben is home and enrolled in a day program affiliated with a leading psychiatric hospital. He likes the school and they think he is a good fit; we are cautiously optimistic.
OUR LOVE HATE RELATIONSHIP WITH MEDICATION
OVER A SEVEN-YEAR PERIOD, 14 DIFFERENT MEDICATIONS HAVE BEEN INTRODUCED INTO bEN’S BLOOD STREAM.
Ben is highly sensitive to medication and has experienced some of the rarest side effects. Once we get a mix of medications that help to manage the symptoms without numbing and sedating him, his body tends to retaliate.
Ben has developed hypothyroidism and hypoglycemia. He has been hospitalized due to his kidneys being compromised and his liver producing high levels of ammonia causing psychotic behavior. He is prone to an irregular EKG. All side effects from various medications. And then there is the weight gain and decrease in energy.
IN A FIVE-YEAR PERIOD, BEN HAS SPENT OVER 13 WEEKS IN PSYCHIATRIC HOSPITALS.
Within the blog, I will write in detail about our experience with psychiatric hospitalizations. We have learned how to navigate the admissions process to maximize insurance coverage, we got smarter about advocating during the stay, and we now know what steps need to be in place prior to discharge. Things I wish we did not need to learn.
the side effects of loving a brother with mental illness
Our journey with mental illness has impacted everyone in the family. Prior to Ben being at a residential program, our boys were very close. Family is important to us and we found ways to make the most of our situation. We did not realize how much his Jack was internalizing and the anxiety he was feeling. We tried therapy for him in the past. He was not willing to talk and felt strongly about protecting his brother.
When Ben was at the residential treatment program, we experienced and enjoyed a “normal” home life. Jack had friends over, we visited family, and we laughed and joked … a lot! Our visits with Ben were fantastic. We had lots of mini adventures during the year. Jack showed no signs of anxiety or depression.
It wasn’t until Ben came home that Jack’s world was rocked. After months of extreme tantrums and defiant and unsafe behavior, it was Jack’s turn to visit the psychiatric emergency room. The diagnosis was PTSD and depression. All the anger and manic episodes Jack witnessed and never processed were coming to the surface in a major way.
Jack spent two months at a wilderness therapeutic program in North Carolina and now attends a therapeutic boarding school. Our journey continues.
the glass is half full … for real
I could write chapters on how our journey has changed the way we think about holidays, vacations, playdates, time with family and friends, and all the other day-to-day activities I took for granted prior to kids. I will save those stories for future blogs. Needless to say our story will continue to write itself as it is meant to.
we are stronger individually and as a family due to our journey with mental illness.
I do not take for granted those moments when the kids are playing Legos together or when they are reading quietly in their rooms. We have all learned a great deal on our path called life.