As many of you know, just two months ago we made the difficult decision to place our sixteen-year-old son, Cody, in a residential treatment center. The treatment center is out of state, in Utah, and making the decision to send our beloved child to live somewhere else was agonizing. Our hearts are still tender.
The journey to obtain treatment has been a long and arduous process. We have fought for Cody to receive care. Thankfully, in just the short time that Cody has been in Utah, he is doing well. There are already significant signs of improvement!
As we have traveled the terrifying road of mental illness and navigated our nation’s cruel mental health care system, I have chronicled much of our story on Facebook. The other day, in response to one of my posts, a question was posed. When I sat down to provide an answer, I decided it was such a great question that it really deserved more than a simple comment. The question, and the answer that follows, deserve an entire blog post. So here goes:
The Question: “How is it you decided to keep [Cody] locked up with all of the in-home services provided these days?”
That is a GREAT question!
Here is my answer:
Sixteen years ago a beautiful, bouncing, baby boy came into the world. After years of struggling with infertility we were blessed with the gift of adoption. Cody was born and we got to be his parents! We fell in love with Cody the minute he was placed in our arms and we knew that he was a gift from God.
As an infant, Cody met all of his milestones on time. He was an easy baby and our dreams of being a family were realized. We were excited about our future. But when Cody was about eighteen months old, we noticed signs that something was wrong. He became aggressive, he had horrible tantrums, and he was so fidgety and impulsive that we feared for his safety. It became impossible to attend birthday parties or even go to the mall. Something was dreadfully wrong.
Fifteen years later, Cody has been hospitalized eleven times. He was hospitalized for the first time at the age of six, he spent two and a half years in a residential treatment center from ages eleven to thirteen, and seven of the hospitalizations have taken place in the last year. Our beloved Cody is sick.
Cody suffers from a devastating brain illness called bi-polar disorder. The illness is vicious and it has ravaged Cody’s life. In the past two years he has not been able to complete any school credits, he is no longer able to play football or participate in other extracurricular activities, and he has failed most of his classes. The illness is so debilitating that it has impaired his ability to perform basic living skills, such as hygiene, diet, maintaining healthy friendships, and coping with the simple tasks in life.
Our home life has been disastrous. Because the illness causes Cody to become aggressive, safety has become our number one concern. We have frequently had to call the police, which is traumatic for everyone. It has gotten so bad that Cody’s dad left a 20 year corporate career to stay at home and keep Cody safe. We have been in 24/7 crisis.
Cody is smart, funny, compassionate, and kind. His heart is golden and he loves to help other people. He is artistic and mechanical, and his favorite hobby is racing remote control cars. We absolutely adore Cody and we just want Cody to be well….as well as he can be.
In the past year as the illness has progressed, community in-home services were provided. We had a therapist, a case manager, a psychiatrist, and two behavior coaches. Our home has been a flurry of activity. Treatment team members were constantly coming and going and our schedule was dictated by daily appointments. Our lives revolved around the treatment schedule. The stress began to take a toll on our own health, but we were (and are) committed to helping Cody.
Unfortunately, in our case, the in-home services were not enough. The illness progressed to a point where Cody simply needed more intensive care. As parents we only want what is best for our child. Our deepest desire is for Cody to lead a happy, healthy, and productive life. We want him to thrive as much as he can. We had reached a point where we were all barely surviving.
And so we worked with the school district to come up with a plan.
Over the past 40-50 years, in our nation’s quest to protect patient’s rights, our mental health care system has been disassembled. As a result we are left with strict laws, not enough hospital beds, and the belief that community services are somehow more humane than inpatient medical care. The patient’s rights movement has gained so much momentum that the pendulum has swung too far the other way. Don’t get me wrong, I don’t think anyone wants to go back to the insane asylums that haunt us from the past, but for a person who is seriously ill, why are we so opposed to humane inpatient medical care?
A few years ago, while I was working as the Youth Pastor in a church, I had the privilege of walking the horrific journey of cancer with a seventeen-year-old girl named Reggie. Reggie became almost like a daughter to me. I spent hours with her in the hospital and I prayed for her to get well. I was there when they started the first round of chemotherapy and we all cried as they poured poison into her tiny little veins. Cancer is vicious. Reggie’s body became frail, she frequently needed platelets, she lost her hair, and she was in a fight for her life.
There were many times when Reggie wanted to be home, in the comfort of her own bed, able to hang out with her friends, and free of the bondage of her illness. Instead she was confined to a hospital bed where she received round the clock medical care from an excellent staff of professionals who worked tirelessly to save her life. As much as we all wanted Reggie to be home, we knew she needed the support of a medical staff. It was in her best interest to stay in the hospital.
Tragically, Reggie lost her battle with cancer. She became free of her illness at the tender age of nineteen. Her death was a tremendous loss, but I am comforted knowing that she is healed in Heaven.
As I walked that journey with Reggie, I often considered my beloved son, Cody, and our journey with mental illness. When a person is diagnosed with cancer, we expect them to receive outstanding medical care. We would be horrified if they were denied treatment.
The way I see it, mental illness is no different. Our son is seriously ill. He is fighting a vicious disease that has taken hold of his mind. It is negatively affecting every area of his life. We pray for Cody to be well and we want Cody to be free from the bondage of this illness. Just like Reggie, Cody is so sick right now that he needs to be in a hospital. Just like Reggie, Cody would love to be home hanging out with friends, and we would love to have him home to kiss him goodnight. But right now Cody needs to be in a secure setting with medical professionals who are equipped to save his life. Cody’s future is at stake. He is worth the fight!
You see, once Cody turns eighteen the game totally changes. Without a Conservatorship (which we will try to obtain) we will have no say in Cody’s care. And once he turns eighteen his treatment options diminish. There are millions of families whose loved ones with mental illness are over the age of eighteen and they will never receive care. In so many cases, community services are simply not enough. Many people who suffer from severe mental illness end up in jail or out on the streets. Is this the “humane treatment” that the patient’s rights groups have advocated for?
For some, community and in-home services may be the perfect solution, but there are millions of others who need a higher level of care.
I don’t think of Cody as being “locked up”. He is safe in a therapeutic environment receiving compassionate treatment. The ones who are “locked up” are the ones we’ve thrown in jail. They are the sons and daughters we have failed to treat.
We want more than a jail cell for our son. It is our fervent prayer that the intensive inpatient treatment Cody is receiving today will spare him from the horrors that so many face when they reach the magical age of eighteen. We are on borrowed time and we are trusting the medical professionals with his life.
In the short time that Cody has been in residential treatment he has shown great improvement. From day one, the doctor, who is on campus every day and sees Cody regularly, began adjusting the medication to find the most therapeutic regimen. Cody currently has A’s and B’s in all of his classes, they are helping him get caught up so he can graduate high school with a diploma, he is practicing for the school spelling bee, he participates in individual therapy, group therapy, and family therapy, he attends workshops that help him with basic life skills, and he has lost over 20 lbs. For the first time in several years he is experiencing success. For this we are truly grateful.
Sixteen years ago a precious baby was placed in our arms. In that moment we were entrusted with a tiny life and we vowed to love, nurture, and care for our child. We believe that Cody was our gift from God and we believe that God wants Cody to have life and live it abundantly. We will do whatever it takes to help Cody thrive. That is why we have chosen residential treatment.