A Mother's Journey

diagnosis and beyond

Full of nervous energy I got on the internet. Thank God and Greyhound I found this site. I read until my eyes wouldn't focus anymore. I could not believe that everything my son had been going through was in these posts. For so long I just knew that there was something wrong besides him just being a bad kid. When I finally got to go see him it was such a relief. I had talked to him on the phone and he sounded just like my "old" son, the one who had been lost in this disease. What a weird kind of relief. When I talked to the doctors I was horrified to find out that while he was in the Wyoming State Hospital they had diagnosed him as bi-polar!! NO ONE TOLD ME All they said was he was depressed and needed Paxil! He spent about 9 days in hospital. Those were the longest nine days of my life, or so I thought. I spent hours looking up this dreaded disease and was ashamed of how I though about MI and the people it affected. It is so hard to understand something you don't know.
I have never been one to keep my mouth shut, and I was truly amazed at the number of people that I knew who had family members with sz. Once I started talking they would open up.......a kindred spirit I suppose. My goal was to talk to as many people as possible, to learn and to teach. Brother, is there a lot of ignorance flying around out there......and I was one of the most ignorant. But, I learn well. My biggest road block was the school. Lordy has that been a battle. The principle wanted a statement from the doctor saying that he was "ok" before he would let him back in school. The superintendent wanted to expel him, and the teachers were scared to death. I talked myself blue in the face trying to get them to do some research, but to no avail. I requested he be evaluated for an IEP so that he could get his education. That was in December of 2002. By law they are required to follow up on a request in a timely manner. HAH......Instead of evaluating him and coming up with a plan, they just continued to suspend him for his "behavior" problems........He is a senior in high school with 3 credits.........do we think we have a problem here? Once again ignorance ruled the world. I know I may sound bitter, but that is because I am. I have had more doors slammed in my face.........The principal even had the nerve to tell me that I needed to back off and quit standing up for him. He said that my son had to take responsibility for his own actions........granted this is true but there was NO WAY I was going to quit going to bat for him.

The diagnosis

It was a Friday........reasonably warm for a coastal November day..when my son had his lie detector test appointment. He was being interviewed by the officer who was to do the test when he mentioned that he hears voices. He said to the officer "but it's ok because my mom got me an appointment with a neurologist". The officer very kindly told him that they would put off the test until he got the results, just to make sure the test was correct. How considerate I thought. So my son and I spent the afternoon walking around town, window shopping, and just having good mother son time. I went to work and he went to his drug and alcohol counseling. He had gotten an MIP (minor in possession) for alcohol and was seeing a man he really trusted and liked. I guess I had been at work for about 2 hours when the phone rang. My son's probation officer was on the phone telling me to go to the hospital and that she had called the police to pick my son up at his counseling appointment and he had evidently become beligerent. Now I was panicked and confused. Upon arriving at the hospital I watched the police car pull up, the officer being the same one who had called him a liar. As the officer got out I could hear my son yelling and screaming and had to watch helplessly as he beat his head on the divider window. At this point the officer yelled at him"If you hurt my car there will be trouble" OK.......now I lose it...I could see he was in one of his "rages", and all this guy was doing was making it worse.......so I told him to just shut up and leave him alone. Meanwhile his probation officer, someone from mental health, and the Chief of Police show up. They take my son into the ER and me into a conference room where they procede to tell me what was going on. Evidently the officer in charge of the lie detector test called the Chief who then called my son's probation officer, with the concern that there might be a mental health issue!!! Well, HELLO !! Pardon me if this now gets a little confusing but the moment was filled with confusion. I began to yell at each and everyone of them....Where have you people been for the last year when I have been begging for help and direction? Why is it you only want to help if you can "cuff and stuff", and many more things. I then asked them why they hadn't called me before they went to pick him up......no answer. My sons story on how it happened goes like this.........He went to his drug and alcohol counselor, when he got there the guy was acting weird. He said all he wanted my son to do was lie down and relax. Thinking something was up he decided to leave, his probation officer walked in and said no you can't, you have to go to the hospital and get an evaluation. His reply was "no my mom is taking me to a neurologist, I don't need to go to the hospital". That is when they called the police. They arrived as my son was walking towards home ( 7 miles ) and started to chase him.........down the highway.....in the dark.....in a car( my son was on foot). They finally caught up to him, knocked him to the ground, and handcuffed him, he was 16 years old. Then they called me.........
So we are now in the hospital. They have to rule out drug and alcohol intoxication befor they can do a mental health evaluation. They asked him if they could take blood and he would not answer. He would not acknowledge anyone or anything.........He did ,however look at his P.O. and tell her that he hated her F****** guts. The doctor could not take his blood without his permission because he was 16. I didn't know that at 16 a child could refuse medical procedures even with parental permission......neither did the police, and boy were they mad!! They would not allow me to be alone with him..."he was dangerous", well, please, I had been dealing with these rages for some time. Finally I convinced them to give me a few moments alone with him. He was devastated. He puts a great deal of importance on trust and everyone that day had violated it. He seethed with hatred for his alcohol counselor who "betrayed" him. And by the way, what were they thinking when they left an alcohol counselor to keep tabs on a suspected mental health subject? All they did was ruin a very healthy relationship for my son. The same goes for his P.O. and of course the police. He asked me how come I didn't come take him to the hospital and I told him that they hadn't called me until it was over. Well I convinced him to do the blood test and do what they wanted because maybe they could find out what was wrong and we might not have to go the neurologist, which was going to be expensive. He made a total turn around and was completely agreeable. With emotions already running amok, the mental health advocate told me that they were going to have him committed to a hospital that was 3 hours away, and they were taking him immediatly. They injected him with Haldol and we waited for his ride. He seemed so tiny to me in that hospital bed.......my little boy, scared half to death. The van came and took him away........far away since I didn't have a reliable vehicle to get to him. I went home and waited for the hospital to call. I was so numb. I still wonder sometimes how I survived it all. The doctor called the next day to tell me that on arrival it took 5 grown men to hold my son down so they could inject him with geodon and that they believed that he was schizo-affective........OH MY GOD!!!!!! My son has schizophrenia............and I cried, uncontrollably, for at least two or three days. I couldn't imagine how life was going to continue. Schizophrenia was the big hairy monster you see in your closet when you are young. It is people wandering around in a daze with that faraway look in their eyes...........I knew nothing about it except what you see in movies and hear in the news, and believe me that was scary. Now it was time to learn all I could in as short a period of time as possible.

Do you ever wonder.............how can this ever make sense? "They" took my son from me because he had emotional problems. Because he had a guardian I had to take extra steps to get the information I needed about my son. How frustrating..........So, I went to visit my son in the hospital, and it met or exceeded my every nightmare. The visit went as well as could be expected I suppose, but I was still in shock. The hospital was a great distance from my home so it was important to fit as much love as possible into the two hour time frame I was allotted. This all took place in November of 2000 so Thanksgiving was fast approaching. As it turned out he was still hospitalized so my youngest son and I travelled to spend it with him there. I was absolutely struck and appalled at the lack of parents there. Out of the aprox. 20 kids eating there were 2 sets of families. Now I try not to judge, but being the human I am, I was very saddened at the lack of families. About two weeks later he was released. Oh happy day!!! When I picked him up the nurse said "He needs to see a counselor at least once a week and take his medication (paxil)" Alrighty then.............so, they had determined he was depressed (my understanding). So off we go to the counselor..........that has never worked well for my son, he is not comfortable talking to most strangers on an intimate level. Thankfully, as his mom he shares everything with me and I mean everything!
Now begins the medication nightmare. The Paxil worked as stimulant. I spent numerous nights up with him trying to keep him from crawling out of his skin. I would be up until 4 or 5 am and go to work at 8. Thinking that it would take time for him to adjust (that is what they told me) we went on like that for about a week. Finally I called the counselor and told him that we needed to find something different. So, we tried Zoloft..............same results. And to top it off he was still having major problems in school. After about two weeks on the Zoloft he quit taking it altogether and said he wasn't going to take anything. We agreed that he would talk to me whenever he was feeling bad. He refused to see the counselor because I also was seeing the same one..........the only one in our town. Even though I offered to quit he still wouldn't go. About a month went by and he was no longer in school and wanted to go back to Oregon, where his friends were. He said he missed them and it was making him more depressed. In my desperation "to fix it" we moved. Lord the turmoil...my youngest son was just settling in and liking his new school and activities and making friends. I guess in my own confusion I lost sight of him and his needs. I have suffered a lot of guilt over "losing" him in all of this.
After moving back to Oregon things did not get better. He was skipping school, staying up all night, and just not doing well. He would fly into rages that were so scary. At one point he said to me.."mom, I hear voices, they told me to bash you in the head with a beer bottle" I said "well you aren't gonna are you?" He said "no, of course not" I had no clue........I hear "voices", the ones that say "dang I forgot to put the clothes in the dryer" I never imagined...... He attacked his little brother, who then came crying to me that he wanted to leave. He did not want to live with his brother anymore, he was scared. I spent so many lonely nights just crying because I had no clue what was going on. I took him to counseling, I took him to the doctor, I yelled, I cried, I did it all.....................nothing. His medical doctor said he was a spoiled teenager who needed more discipline.
Then the police knocked on the door. They said that he was suspected of breaking windows in town and burglarizing a record store. Up reared the ugly head of denial..........convinced he would not lie to me, I confronted him......."no, of course he hadn't done that" So off to the police station we went......where he confessed........ And being a responsible mom I said he needed to take his lumps. Now we are in the juvenile system........YIPEE...... When he did his intake with them I maintained that he needed to not plea bargain or get a lawyer,. because after all he had done it, and I thought he needed to learn his lesson. He told the worker he did it for the adrenalin rush... So, we went to court, and they threw the book at him. Probation, restitution, and community service. Needless to say, he did not do well in the community service. Noone was gonna tell him what to do! Even though he admitted to doing these things, I still Knew, somewhere in my heart that something was just not right. So, I called and got him an appointment with a counselor. She thought he might have a seizure disorder........finally a path to follow. So, we got a referral to a neurologist with an appointment two weeks later. And the police knocked on the door again.........this time he was at school and scared a little boy by yelling he was the devil. They said that he then started beating on the side of a moving trailer....thus putting the young boy in fear of his well being. We went to the police station for questioning. When asked how he got his knuckles hurt he said, "I don't remember.....I am not saying I didn't hit the trailer, I just don't remember" The ever compassionate policeman said "I think you are a liar" So, he offered to take a lie detector test. The officer agreed and said he would let him know when it was going to be.............Little did I know the true nightmare would begin with something so simple.

It starts

My son has schizo-affective disorder with bi-polar manic depression. Wow, two years ago I couldn't even spell it........and now I live it. As a mother I always worried about the broken bones and bloody noses of my children. I imagined that the worst that could happen was they would end up in a cast for 6 weeks or have many stitches. What I wouldn't do to trade this disease for a cast or two. My middle son was born about 3 weeks early and he seemed to be mad at the world for making him leave his nest! He had a minor birth defect, his anal opening was scar tissue and too small to insert a rectal thermometer. After a year of having to stretch the opening he had surgery to correct it. All went well except I now had a "spoiled" baby. I held him all of the time and "babied" him because it was so hard for him. And then we went about our lives. At the age of two he started having temper tantrums and holding his breath until he turned blue and passed out.........oh the terrible twos. In retrospect I have to wonder..........Life continues rather normally. When he entered school he was socially immature, so his second year he went to a half day of kindergarten and a half day of first grade. The third year he was on his way. Academics were not a problem, behavior was. At the time I just thought that he was going to be "that" child out of the three. Always the daredevil, he would jump from anything and at age 7 wanted to try hanggliding!! And was angry that he couldn't. In retrospect I have to wonder.........We moved around a lot. My son's father was a logger, and a drinker. I worked from the time my youngest son was one, as logging and drinking didn't quite pay the bills. My husband was an awesome father. He played ball, took the kids to the woods and explored, everything a dream dad could do for 3 boys. Our positions switched and he became the caregiver and I the provider. So, when he died at the age of 34 from a self-induced drunk driving accident, all hell broke loose. I realize that the death of either parent in any situation is devastating, but for my second son it seemed that it multiplied his behavior problems twentyfold. Once again, I have to wonder.......So, I began the chore of raising my boys without a father. In my own grief, I remarried very quickly....it was after all more fun to plan a wedding than it was to deal with the realities of my husbands death. I began to drink.....a lot. It seemed as though everything was gonna be "ok". Then in the 8th grade my son told a teacher he wanted to committ suicide. He explained that he wanted to be with his dad. How heartbreaking that was. The school counselor talked to him and did a couple of grief counseling sessions and away we went again. His behavior problems grew and grew. My new husband and I decided that maybe a move would be beneficial to us all. So, off we went to Wyoming to make a fresh start. My son had more difficulties in school and while at work one day I got a call from school. They were sending a police officer to pick me up and bring me to the school. My heart was pounding....."what has he done now?" I thought. I was lead to the counselors office where I was told that he had been taken into protective custody by the court because he told a teacher that he had attempted suicide. When I asked them what that meant they said that he was going to be appointed a guardian and would be sent to the Wyoming State Hospital for evaluation. I was completely stunned. In one fell swoop, I had "lost" custody of my son and he was being sent away. I made it to the court house just in time to kiss him and say good-bye. As I walked back to my work and got in my car I cried. What had just happened? I returned to my home, sent my youngest across the street and sat in the dark. My husband was a truck driver and he was gone. So I drank, and I cried, and I drank some more. As I write this the emotions of those days are washing over me in waves. I think I shall stop for awhile and will continue this later.