BACKGROUND
I am a 62 year-old wife and mother of one son, Ryan, who is 33. I wanted a child so badly, so I endured years of painful fertility tests and treatments. In the fall of 1983, my wish came true. I was finally pregnant and looking forward to motherhood. My husband, Jeff, and I had no idea what was ahead of us.
From day one, Ryan stood out as "not your average baby." He was born so wide awake and looking all around the room. He definitely was not a sleepy baby. All I kept hearing was, "He's so alert.”
On the second day in the hospital, one of the nurses rushed in and asked me to bring him into the room with me. I'll never forget the look on her face as she exclaimed, "Wow, what a temper on him!" He was keeping the other babies in the nursery awake — when all they wanted to do was sleep. I look back now and see that as the first sign that something was not right.
Ryan had trouble socializing when he was in nursery school, and I was advised to put him in home day care and have the school system evaluate him. The day care arrangement worked out well, and it seemed to be a better fit. The school psychologist assured me he didn't see any signs of a mental disorder, such as schizophrenia, and remarked that Ryan had some endearing qualities. Ryan later attended a different nursery school and started making friends. I thought my troubles were behind me.
In kindergarten, Ryan began acting like a dog and growled at the teacher. They didn't know what to make of him, and the school psychologist was called in to monitor him. He was promoted to a transitional first-grade classroom.
Ryan's school years were uneventful until fourth grade. He’d been seeing a child therapist for depression. But his anxieties became a concern when he thought his hands and feet were falling off and all his teeth had holes in them. He was admitted to a psychiatric facility where they diagnosed him with psychotic depression. Later that week, we met with the psychiatrist who broke the news to my husband and me. Ryan had bipolar disorder. I broke down. My mother was bipolar, and I knew how hard her life was. My intuition told me Ryan's life would never be easy. I was right.
Ryan was able to hold it together for the school day. But when he came home, he was tough to live with. Somewhere, the label oppositional defiant disorder was added in. I attended a parents support group, and Ryan's psychiatrist taught Jeff how to physically restrain Ryan. He continued seeing psychiatrists and was put on medication for bipolar disorder at age 11. It helped. He stopped throwing things when he didn't get his way or was told "no." But he was still an extremely stubborn and difficult child.
By high school, Ryan began to mellow out somewhat. He had a routine, excelled in art and playing the trombone, and enjoyed writing scripts and making films with his friends. But, after high school, Ryan's group of friends moved on with their lives. Ryan felt stuck. He tried working a part-time restaurant job. After a while, he was let go when the store needed someone who could work longer hours. He decided to attend a two-year college program for filmmaking and video editing, which he was very good at, but after one year, the pressure and long commute were too much.
Next came trying his hand at his own video business. He got some jobs for weddings and other social events, and made good use of his skills. His illness was under control, but he was very unhappy emotionally. He had read negative things about psych drugs on the Internet and had already experienced some nasty side effects. At age 25, Ryan decided to try going off of his medication. I wanted to support him, especially when Jeff said to me "He deserves a chance," but I feared what would happen.
First, Ryan felt this incredible energy. He helped me clean closets and set up his living quarters in the basement. This was the first sign of hypomania. Soon his illness progressed to full-blown mania with psychosis. He started having delusions and talking in rhymes. His thinking was disorganized and not making sense. This began an eight-year period of revolving-door psychiatric hospitalizations. In the hospital, they would stabilize him, and then he would come home and stop the medication. He was constantly in and out of the hospital, convinced he didn't need medication.
The chaos was taking its toll on us. So we found a rooming house in another town where Ryan moved in. He was trying a holistic program called True Hope from Canada, which was high doses of all-natural vitamins and minerals. People on the program were claiming they were able to come off of their psych medication. It worked for a while, but Ryan eventually de-compensated and ended up back in the hospital. And he was told not to return to the rooming house.
I had been attending NAMI support group meetings and learned that Massachusetts (MA) clients of the Department of Mental Health (DMH) could be placed in a group home if they had a long-term stay in a state hospital. Ryan was already a DMH client. He understood that this was the best option for getting him housing, since any housing for mental illness was extremely hard to come by. In fact, there was a housing crisis for mentally ill individuals, and it continues today.
So we refused to take him back home and requested a transfer to a state hospital. I learned that there was a long, statewide waiting list. That's when I got my state representative involved. He did something magical, because suddenly, Ryan's name was at the top of the list. After a year-long stay at Tewksbury State Hospital, Ryan was released to a group home in Bridgewater, MA. That was three years ago.
TO BE CONTINUED: PART TWO
WHAT I'VE LEARNED ABOUT OUR BROKEN MENTAL HEALTH SYSTEM