The begining and life as we know it now.
Hi. I’m Aimee. I started this blog because I find little on the subject of raising a child with a diagnosis of Schizo-affective disorder. I hope that this blog will help others who are faced with many of the same struggles we face every day. It is also my way to vent out some of the frustration that comes along with this diagnosis. For those of you who aren’t raising a child with a special needs, I hope you are able to understand the struggles we parents of special need children face and are atleast willing to say “I am here for you even though I don’t understand the struggles you face”.
I am gonna start by telling everyone the history of my descent into the world of parenting a child with special needs. It all began Feb. 16, 1998 when my son, Joey, came into this world. Bless his little soul, I had no labor pain. I woke up that day to the feeling like I had to push. I was rushed to the hospital, and not even thirty minutes later he came screaming out. Let me repeat.. I HAD NO PAIN WHATSO EVER. Any mother would say that was very very rare. Much later I would start to say, “Now I know why I had no pain, its because life was gonna be hard enough later on” So Joey came out at 7lbs 7 oz. The first couple of years of his life were easy enough. He had hearing problems at 2 but that was corrected with tubes. At 3 he never went to sleep, so that was our first round with medicine. We had a wonderful doctor at the time. He listened to what we had to say and prescribed my son a medicine he would only take for 30 days. He believed at the time it was just a chemical imbalance and that righting that would fix the problem. And we believed it had. We didn’t have any other real problems until Joey was in kindergarten. Joey’s father and I had seperated before he was born and divorce when he was three. I had a second husband and Joey’s father had married again also. My husband and I lived in Evansville, Indiana at the time. Joey’s father lived in the smaller city of Mt. Vernon, In. We thought that the huge classrooms in the Evansville schools were the problem so Joey and his sister went to stay with his dad in Mt.Vernon where they had smaller classrooms. Joey had problems all through first grade and was diagnosed with ADHD and put on medicine. My husband and I decided to move back to his hometown of Lawrenceburg Indiana and we took Joey with us and our other 2 sons. Our daughter decided to stay with her dad where she was comfortable. In second grade Joey’s teacher noticed he was having problems and recommended he recieve counseling from our local Community Mental Health Center (something to this day Im very very thankful for). Joey’s first counselor was Andy R. He saw Joey at school and met with me once a month to tell me about his progress. Andy recommended Joey be put into a program called Intensive Youth Services. It is also ran by CMHC only instead of the case manager seeing him at school they would see him at home, or where ever was convient. At the end of 2nd grade we had tried so many ADHD medicines none really worked and several he was allergic to. Because of his baby brother had so many medical issues we had moved into my mother-in-law’s at the time for the extra help with childcare. That year I think I spent most of it in the hospital with one child or another. Any ways, so third grade for Joey started at a new school. It was aweful. He had a horrible teacher who didn’t understand anything we were going through. She actually told my son he was gonna fail third grade. She refused to listen to anything his case manager Amy D said. Actually blamed me. Well Amy and I discussed it. I removed my son from that school and re enrolled him back at Aurora Elementary. (A school district he is still in and will remain so.) 2 weeks later his teacher and I met and she couldn’t believe the difference. He was getting A’s an B’s and the sweetest boy. Christmas break came and then we all started seeing a difference. His teacher called me and said he was spacing out and having these aweful headaches. He was acting different and he would purposely get in trouble so he wouldn’t have to go out to recess. I took him to the doctor. He was diagnosed with petit mal siezures and CMHC was seeing him more often. In April that year, We were in the doctors office when Joey started yelling. He swore up and down someone was behind him talking. At the time he was in a chair up again the wall in a room with only the doctor and myself. His doctor asked a few pointed questioned and we finally learned Joey heard voices. He had auditory hallucinations. As far as we could tell hes always heard them. He just never knew no one else heard voices in thier heads. CMHC were still observing him. As long as he wasn’t a danger to himself or others, he was ok. May because our first big problem. Joey came home and met with Amy telling her that the voices wanted him to hurt someone in his class and he would have done it too just to get them to shut up. Only the teacher didn’t have the object in her desk. Immediately Amy and I took him to Cincinnati Children’s Hospital were they admitted him into the acute psych ward. It was a scare time. Joey didn’t do good the first few days. Amy and I went to the first of 4 family sessions and when Joey came in he got so mad he through a table across the room. Well that was the end of that meeting. The second one went more smoothly. At the third meeting they had test results for me. They had done extensive testing on Joey and I got the shock of my life then. My beautiful boy was diagnosed with Asperger’s syndrome, General Anxiety Disorder, Intermiddent Explosive disorder, Sepration Anxiety Disorder, and Psychosis- Not otherwise specified. The last was because at his again he couldn’t be diagnosed with a specific psychosis. After several family outings and all to make sure he was safe to come home, Joey was discharged with a list of medication and a whole new set of doctor appts and therapies. Life went on for a year without any major upsets we had our daily struggles, but with CMHC’s help we got through it.
Then Joey went into 5th grade and all hell broke loose again.The hallucinations got worse and daily life was a struggle. We never knew what it was going to be like to wake Joey up to get ready for school. He would act out as soon as he woke up or he would get up fine, get ready for school then have a panic attack before walking into the school building. Joey’s communications skills were awful and so figuring out the problems was a mission and a half. An example of his communication skills: He went to the school nurse and reported, “I have a tornado in my stomach.” Took several questions before we realized he was talking of the feeling you get when your anxious.
Joey had several stays in acute units over the months of Aug through November. We were searching for help and answers and not really getting anywhere. It was all so frustrating. The acute cares weren’t cutting it. Most were actually more problematic than helpful. I remember one we went to, decided yes Joey fit the criteria of admittance to the acute unit. That was a Monday night. Tuesday morning I got a call asking for permission to do a battery of test on him, which I ok’d. Then Wednesday morning I got a call asking me how soon I could be there to pick up my son as he was being discharged. They never tested him, or had a single family session. A few weeks after that, Joey had a psychotic break. His aunt woke him up for school and all seemed fine. Twenty minutes later I go to make sure he was ready and he just lost it. He was uncontrollable. He was 10 and a scrawny little guy, yet all that adrenaline helped him knock over 8ft solid oak bookcases. It was the very first time I ever had to call 911 to get help in controlling my son. When it started his aunt, her fiance, and myself were there trying everything we knew to calm him down and keep him safe. Two emts and a police officer showed up. 5 of us were holding him down trying to keep him and everyone else safe and to get some sort of calming medicine into him. Even with that many adults holding him down, he still managed to get loose enough to punch his aunt in the face. When we were able to restrain him to a gurney, he was taken to our local er. His casemanager, at the time, met us at the er. Joey was consious the whole time. I was told they were just waiting on a place to accept him as a patient. About 30 minutes into our er visit, Joey looks over at his case manager and ask her where she came from and where he was. This was the first recording of what we came to know as blackout episodes. He didn’t remember a thing that happened from the time he went to bed the night before to that point in the hospital. Joey was transported about 2 and half hours later to a facility.
The new facility admitted Joey and then signed us up to come back in for a family session in two days. When we went in, the onsite therapist recommended Joey be placed in a residential facility. Though the decision was very hard for me to make I ultimately agreed because something had to give before someone got seriously hurt.
Joey spent 10 months in residential care. While the begining was hard, I would never change it. You see the place he was out did amazing work. They were the ones to figure out that Joey was being treated wrong. For two years along with Joey’s Asperger’s and psychosis, he was being treated for uncontrollable anger. The sad truth was Joey wasn’t angry, He was severly depressed and didn’t know how to express his emotions. We also found out during his time in residential that Joey doesn’t just have petit mal seizures but he also has temporal lobe seizures. The hardest part about residential is the phases to go through before you can be discharged. Joey finally managed to get through it all in 10 months.
The rest of 6th grade and almost all of 7th grade ran smooth. The end of 7th grade we saw my son slipping again. Unfortuantaly we were seeing a psychatrist I didn’t care for at all. He decided to randomly change Joey’s medication because he felt his medicine wasn’t working. Problem was I refused to put my son on the medicine he was prescribed because it was extrememly dangerous. The medicine has warnings that death is possible with missed dosing or with the wrong dosing. That there was a very fine line between theraputic and lethal. My thoughts was some days it was extremely hard to get Joey to take his medicine; other days he’d simply hide his medicine nad not take it. I didn’t like the ramifications of missed dosing or wrong dosing. Any ways.. so we say Joey having more and more issues. Joey school days wer shortend. He went to school for 4 periods instead of 7. Over the summer Joey had 2 acute stays one for attempting suicide. 8th grade we saw Joey just slipping more and more. School was cut back to 2 periods. His hallucinations were sparatic. He wasn’t sleeping really. CMHC was seeing him 5 days a week. Then lucky for us, we got a new child psychatrist. Joey hit it off with her. He was actually talking to her and so the med changing began again. It was at this time, that I found out that Joey was misdiagnosed. Children like Joey are commonly misdiagnosed because at early stages it shows the same ways as ADHD. Also children under the age of 13 are very seldom ever diagnosed with schizophrenia. At that magical age of 13 Joey’s diagnosis became schizo-affective disorder, thought processing disorder, Asperger’s syndrome, and seizures.
Well there are some very big downfalls to having a child on medications. One is when they have an allergic reaction. In April of this year, Joey was diagnosed with mono. Our peditrician neglected to warn me that his natural immune system was extremely low and that any medicine we could decrease or stop while he had mono should be. Joey developed a very scary reaction called Stephen Johnson syndrome. It took us almost two weeks to find out what he had and by that time I almost lost my son. We had been in and out of the doctors office due to the mono. We went in on a friday because His mouth was severely swelling. Dr wanted an xray done of his throat. We didn’t make it to have the xray. Joey started having trouble breathing. He was transported by way of our local er to Cincinnati Children’s Hospital Medical Center. We were in the er there for about 15 minutes before he was diagonosed and transfered to inpatient. It was a scary week and half. It took yet another month for the insides to heal. They found out Joey was allergic to one of his medicine called Lamictal and with his immune system down, the reaction just took ahold.
Since our stay in the hospital, Joey is maintaining life, though he is between a rock and hard place where medicine is concerned. 9th grade has been an interesting year so far. Thankfully we have an awesome school and teachers who help him achieve his simple daily living goals.
That is just a very broad overview of our lives to this point. I wanted to give you a history so you have a basis for future posts. My hope is to reach other parents and children going through the same sort of things. So that others know they aren’t alone. Another hope is that I am able to teach aleast one person to better understand what its like for the families and the children themselves who face this stuff every day. To be totally honest another hope is that I might find other things to try or resources that I don’t know about to help my son.