Post by anon4now on Jul 14, 2008 7:29:30 GMT -5
I found these stories online (couldn't tell ya how at this point) and there was authorization to share with anyone, anywhere on the website. I was thinking about what KK wrote in my last post about finding someone to share their experiences as a child, and I thought of these stories that I read. They just confirmed I'm not crazy and there are others going through this too (or have gone through it) It's from the parents point of view.
Anon
OUR STORY
Jeremy was always a somber child. He would laugh and play like any normal child, but there were times when NOTHING would make him smile. Beginning at the age of 3, he really began having problems. He was "disenrolled" from 3 daycares for violence. In Kindergarten, he was way ahead of his class academically, but his teacher wanted to retain him for "immaturity". I refused to allow it. She told me that he would never succeed. He was always in trouble. I knew something was wrong, but everybody wanted to fix ME instead of believeing anything could be internally wrong with my baby.
We moved back near my family when he was 6. The new school was smaller and the families more involved than what we had experienced before. I hoped that the changes would help. Within the first two weeks, the teacher asked me if he had ever been screened for ADHD. The answer was "no". I took him to a doctor who specialized in ADHD. It was his determination that Jeremy did have ADHD and we began treatment with Ritalin. When that didn't work well and Jeremy developed tics, the doctor moved on to alternative treatments. Catapres made him like a zombie and he crashed at each dosage increase. Imipramine seemd to help the most, but then it began to backfire on him.
Jeremy was diagnosed with BiPolar Disorder at age 9 during a stay in a children's psychiatric unit. He was admitted following a period of behaviors I could not understand nor control. By age nine, he had begun lying, stealing, destroying property, setting fires, and hurting himself. (These episodes are called Rages) He had no real friends at school, though he would say that wasn't true. He was filled with an anger I could not understand. Most people who knew us were saying it was my fault as a parent, that if I would just control him, he would be fine. I am sure some even suspected me of child abuse, but there was no proof since that wasn't the case at all! Some claimed it was because his father was not around anymore (I now believe his father is also BiPolar, but undiagnosed). Some told me that if I wouldn't give in to his tantrums he would stop having them. Actually, I NEVER gave in to a tantrum, they made me more determined he would not receive something which he might have gotten if he had logically explained why he felt he should.
Placing him in the hospital at age 9 was the hardest thing I have ever had to do. But it was also the best choice I could have made. It took them 3 weeks to diagnose him and find the correct medication combination, but the child who came home to me was smiling, loving and had started remembering the things he had enjoyed like Nintendo, bike riding and rollerblading. As time progressed he lost most of his anger and began to make friends at school and to cooperate at home. As my son is a rapid cycler ( defined by DSM-IV as having 4 episodes a year, but he can have that many in a DAY) this changes without notice. The medication isn't a cure, it is an adjustment. We still have to continue with behavior modification, and he still cycles, but not to the severe degree that he was reaching prior to hospitalization. I know that puberty is going to play havoc with med levels, but I am prepared for that (I think).
Update 4/11/98
Jeremy has had to go to the hospital again. this is the first repeat visit since he was diagnosed seventeen months ago. Actually, I am told that is a long spell for being hospital free at this stage in his disorder. The psychiatrist attributes that to the fact that I have learned a lot about the disorder and I stay VERY on top of Jeremy's cycles and meds. I also stay in close communication with him and the Therapist. The increase in the Lithium and Wellbutrin were not enough this time. Jeremy became increasingly depressed and angry. He began slipping away from me. His psychiatrist and I were already starting to work on adding a new medication, but he had a bad reaction to the Risperidol. Before we could try another new med, Jeremy had done something irreversible. He put our two cats (which he loves dearly and who are the best calmers we have found when he is frustrated) in danger, and this resulted in their death. He did not intend to harm them, he just used some very poor judgement, then suffered from a memory lapse (this can be a symptom of BP change of cycles) and forgot to let them out of where he put them to keep them from eating the dog's food. Jeremy was so remorseful that he began planning his own death. I immediately called both his therapist and his child/adolescent psychiatrist and everyone agreed that the only thing left was to get him to the hospital and get him stabilized. He was only there for 5 days. I never thought that a short stay would be harder on me than the 3 week one when he was diagnosed, but it was. I wasn't prepared to rush him in like that. He cried and begged me not to punish him by putting him away. He couldn't seem to understand that it wasn't a punishment at all. I was afraid he needed me more than I could see him while he was there. In the end they added Zyprexa to his medication. He got past the active suicidal wish, but he still isn't through with the cycling. He isn't over the depression. We have moved him to almost full day resource at school to relieve some of the stress he has been experiencing.
I am still praying that we will get past his puberty with both of us intact.
Update 10/7/98
Well, we had a good summer and it is a new school year. We have pulled him back out of resource this year. He is in 6th grade now. His district has K-8 on one campus, so he is still at the same school. We are trying something new for them. He attends all of his regular classes except that we have combined his Reading and Language (the areas he is strongest in). The math work is modified since he has a learning disability in that subject area. The free period caused by combining the other two classes is scheduled for the last one of the day. He has a one-on-one session with an aide (she has a lot of patience) to complete any work he had difficulty completing during the day. This seems to be working. He is not under the stresses that he was during the end of last year and we are not constantly fighting the homework battle as he can complete that with the aide also.
He is still taking the Zyprexa in addition to the Lithobid and Wellbutrin, but at a lower dose than what was used to stabilize him.
He is 11 now, and has a "girlfriend" at school. No, he isn't allowed to date! But puberty is hitting early. Life marches on.
________________________________________________________________________________________
Other People's Personal Stories
Arlene and Michael:
When it comes to helping a child, I have decided that my family's life is an open book! Don't hesitate to ask ANYTHING of me!
My son, Michael has ADHD, Obsessive-Compulsive Disorder, Oppositional Defiance Disorder, Bi-Polar Disorder and Tourette's Syndrome - a big plate full, for sure. In my journey through the Internet, I have met many parent' whose children also have these disorders, especially the first three.
As you can imagine, multiple conditions can make the diagnosis and treatment even more complicated. If Roy is exhibiting symptoms of rage or irritability, for example, it could be from the Tourette's OR from another disorder. There is medical evidence to support this. In my son's case, it took three years before his separate disorders were diagnosed and treated.
To give you a better idea of our family's situation, I''m going to give you a (hopefully!) brief rundown of Michael's history. I hope that some of this information might give you some insight and understanding, and perhaps courage.
Michael's older brother was born, pink, healthy, and screaming - the "usual" baby. Michael, on the other hand, was born blue, limp, and not breathing. (The cord was wrapped twice around his neck.) But after receiving oxygen, he seemed to rally quite well. His pediatrician told us that Michael had been in fetal distress, apparently for some time, and appeared to have lost weight in utero. He told us that "about 3 to 5% of children with these problems have learning disabilities." If only we could have predicted the rest so easily!
Michael was fine until 2 months of age, when he began having episodes of sudden high fevers, nausea, and vomiting. We took him to the best specialists (thank goodness for insurance) who finally determined that Michael had an underdeveloped valve in his stomach. We were told to bear with it - as Michael grew, the valve would eventually mature and things would get better. He continued to have episodes like that weekly. He was a bright little boy, and normal in other ways, if a little underweight. We learned to adapt. The only thing I can remember during this time that might be significant is that Michael was put on a drug called Reglan, in the hope that it would "settle down" that pesky, immature valve and slow down the vomiting. After a couple of weeks on the drug, I noticed that Michael was jerking his shoulder upwards, toward his chin. His doctor immediately stopped the drug, and the jerking gradually ceased. I (smugly) concluded that we were well on our way to "curing" Michael.
When Michael was seven, he had an episode so severe that his doctor had us rush him to the hospital, where it was found that Michael had what is known as a horseshoe kidney - two kidneys that were "grown together at the bottom." This is a surprisingly common condition: however, Michael's was partially obstructed on one side, hence the episodes of fever and vomiting since babyhood! You can imagine how we felt - shock, horror, dismay, and (of course) relief that we finally knew what was wrong.
Michael had a seven-hour operation, which completely corrected the condition. His physical health improved tremendously over the next few moths. He ate everything in sight, and became so physically active that we were basically dealing with "a new Michael."
This is when his teachers and I began to suspect that Michael had ADHD. We think his previous physical illness may have masked the ADHD, but his teacher reported to us that Michael literally "couldn't sit still," and was having a lot of trouble following along in class. So we agreed to have him tested for ADHD, and we decided to put him on Ritalin.
Whether his earlier physical difficulties caused the ADHD and started the ball rolling to the problems that came later, I suppose we'll never know. Theories abound!
After the ADHD was diagnosed, and the Ritalin seemed to work so well, Michael did very well until the middle of third grade (about a year). He then began to retreat to the corner of his classroom, and insisted on holding his jacket over his head most of the time, even in the lunch line and at recess. He complained sometimes that the voices were "bothering him." We assumed (wrongly, we now know) that he was talking about the voices of his classmates. He seemed irritable, especially when the Ritalin wore off. And the ticcing continued, along with attacks of rage, sometimes brought on by conflict, sometimes with no discernible trigger..
Even taking him off the Ritalin didn't change that. We now know that the Ritalin wasn't the "cause" of Michael's tics - although I blamed that, and myself, for a while. Later (much later), when we researched our family history, we found that there was a history of tics and "odd" behavior on Terry's (my husband's) side. And OCD and depression on mine. Unfortunately, there is a lot of shame connected to these disorders, and our families haven't been any help. And since Tourette's is rather uncommon, it is difficult to talk to other people with the disorder. Without the Internet, I don't know what we'd do!
Since these problems seemed to be behavioral in nature, his teacher (who I plan someday to recommend for sainthood!) advised us to wait things out. And we did. For two years! During this time, Michael went from a bright, happy little boy to a child I can only term "a holy terror." Sullen, disrespectful, irritable, refused to learn or participate in class, and on and on. Also during this time, we worked with his doctors and teachers to try to manage his condition. Several types of therapy and medication were tried, and failed. His doctors admitted that they were stymied. Nothing in their literature or experience could help them actually give a name to what was going on with Michael, other than the obvious depression they were seeing.
Unfortunately, his doctors were working under the standard assumption that "children can be badly behaved, but mental illness in children is rare." And we had no reason to believe otherwise. In the past few years, the medical community has changed its attitude, but unfortunately it may be many more years before that knowledge "trickles down" to the rest of society. I do what I can
This is when we saw a gradual return of the ticcing behavior. Severe, multiple tics, which involved all of his upper body at times. Not too much at school; he seemed to have some control over them. His entire being seemed to be consumed with rage, depression, defiance and hopelessness. It seemed that he could only give up his defiance with his father and I, and even then, it didn't happen very often. During his lucid times, he would cry and say, "Mom, Dad, I don't know why I act this way. I need help." And we had no more help to give. We saw the best specialists, tried every treatment we thought might help, and they were of no help at all. No one seemed willing to believe that Michael's behavior was anything but stubborn willfulness, or depression. Although no one was ever brave enough to say "poor parenting" to our face, we found a lot of literature with this assumption. I came out of a lot of school meetings feeling guilty and inadequate!
We gradually gave up, not on Michael himself - he is our son, and we would never give up on him! What we gradually gave up was our hope for a happy future for Michael. I won't go into detail, but you can imagine the state of our hearts and minds during this difficult time. "Anguish" is the only word that even comes close. Our best hope became the one in which Michael, when (not if) he was tried and convicted of some crime, would be placed in a prison or hospital where people were kind to him. A quite "hopeless" hope, for sure!
To illustrate: At one time, we had tried a special school for Michael - a psychoeducational center which contracts with the public school system. His first day of school, he came home and said, quite proudly, "Guess what Mom! I'm the only kid in my class that doesn't have a probation officer!" All I could manage to say was, "That's good, Michael. I'm proud of you." At the time, even THAT was a small measure of comfort!
This next part I will tell with the advantage of hindsight: Michael's father's and mine, his teachers', and his doctors'. All of us have gained greatly in the "hindsight department!"
When Michael was 12 (Summer, 1996), he experienced a psychotic break while attending a psychoeducational summer program (our newest final "last hope") , and had to be hospitalized. It was that 10-day stay that changed all our lives. An ending to much of our anguish, and the beginning of another journey - certainly a better one, but with its own set of detours and roadblocks.
During this stay Michael was finally recognized as possibly Bi-Polar. And Obsessive-Compulsive. Even the word "autism" came up a few times. Disorders even I, with my medical background, had heard little about. He was placed on medications that address these disorders specifically.
Within 72 hours he had "re-connected" with reality, his moods improved and stabilized somewhat, and we once again began to see the re-emergence of that bright, happy (if hyperactive) seven-year old boy who had gone around shouting "Love is TRUE, Mom!" (Something he had picked up from an old cartoon, I think). And love IS true, ya know?
((I am sitting here crying, wondering if I can finish this. But I must - it would be unfair to you (and to our kids) if I didn't tell you about our "happy ending", wouldn't it? ))
Today, Michael (and we) are still working to overcome those "bad years." The bad behavior patters, surely, but also the negative, knee-jerk reactions we had all developed. It helps a little that Michael has very little memory of third through 5th grades. On the downside, he remembers very little of those years academically, either! Be he IS learning again, we are all learning!
It turns out that it is easier for the school to see Michael as Emotional-Behavior Disordered, than it is to see Michael as mentally ill. So his father and I are doing an almost daily, persistant readjustment of "the school's" understanding, attempting to change their attitudes, along with sharing the new knowledge about Michael's disorders on a one-to-one basis. It IS working, but it takes time!
Every time Michael behaves badly, I have to consider, and explain to school staff, that, yes, Michael's behavior was inappropriate, but that it COULD be a manifestation of his mental illness. This can be confusing at times, but it is always worthwhile to give effort into trying to separate the behavior from the illness.
We have just completed his IEP for this school year. It is 13 pages long. But in it, like last year's, lies the foundation for re-building Michael socially and academically. I have recently, and very cautiously, begun to allow myself to hope for that bright and happy future I once envisioned for Michael. But now I can finally, honestly say that, instead of seeing boulders in the road, I see only speedbumps, and the occasional Detour sign.
One of those "bumps" is our continued search for the right combination of medications. (So little is known about the effect of these types of medication in children and teens!) And dealing with the side effects. And dealing with my own periods of depression, which makes me less effective as Michael's advocate. There are others, but none as big or bad as the ones we have already climbed over!
THIS is why I'm sharing this with you - I now believe that EVERY child deserves an outcome like Michael's! And to let a physical, neurological, biochemical or mental handicap stand in the way of that future would be a tragedy of the highest order!
On the other hand, I am realistic enough to believe that no one person can effect this type of change! His father and I (the obvious first choice) were too burned out, and too ignorant of mental illness to know what was wrong and how to fix things. We have learned, of course, but from other people at first. Michael needed many people to make it happen for him; the doctors who were able to finally diagnose him, his teachers, his therapist, and the understanding and patience of many other people in his day-to-day world.
But it only takes one person to start the process! And I truly believe that you can be that person for your child, if only you can find the strength inside yourself. I realize that you may not be able to change anything at all, and please, please don't blame yourself if you fail! Motivating people is a daunting task. There will be other children! And please keep believing that our children will eventually get all the help they need - you and I are not the ONLY people who care!
Anon
OUR STORY
Jeremy was always a somber child. He would laugh and play like any normal child, but there were times when NOTHING would make him smile. Beginning at the age of 3, he really began having problems. He was "disenrolled" from 3 daycares for violence. In Kindergarten, he was way ahead of his class academically, but his teacher wanted to retain him for "immaturity". I refused to allow it. She told me that he would never succeed. He was always in trouble. I knew something was wrong, but everybody wanted to fix ME instead of believeing anything could be internally wrong with my baby.
We moved back near my family when he was 6. The new school was smaller and the families more involved than what we had experienced before. I hoped that the changes would help. Within the first two weeks, the teacher asked me if he had ever been screened for ADHD. The answer was "no". I took him to a doctor who specialized in ADHD. It was his determination that Jeremy did have ADHD and we began treatment with Ritalin. When that didn't work well and Jeremy developed tics, the doctor moved on to alternative treatments. Catapres made him like a zombie and he crashed at each dosage increase. Imipramine seemd to help the most, but then it began to backfire on him.
Jeremy was diagnosed with BiPolar Disorder at age 9 during a stay in a children's psychiatric unit. He was admitted following a period of behaviors I could not understand nor control. By age nine, he had begun lying, stealing, destroying property, setting fires, and hurting himself. (These episodes are called Rages) He had no real friends at school, though he would say that wasn't true. He was filled with an anger I could not understand. Most people who knew us were saying it was my fault as a parent, that if I would just control him, he would be fine. I am sure some even suspected me of child abuse, but there was no proof since that wasn't the case at all! Some claimed it was because his father was not around anymore (I now believe his father is also BiPolar, but undiagnosed). Some told me that if I wouldn't give in to his tantrums he would stop having them. Actually, I NEVER gave in to a tantrum, they made me more determined he would not receive something which he might have gotten if he had logically explained why he felt he should.
Placing him in the hospital at age 9 was the hardest thing I have ever had to do. But it was also the best choice I could have made. It took them 3 weeks to diagnose him and find the correct medication combination, but the child who came home to me was smiling, loving and had started remembering the things he had enjoyed like Nintendo, bike riding and rollerblading. As time progressed he lost most of his anger and began to make friends at school and to cooperate at home. As my son is a rapid cycler ( defined by DSM-IV as having 4 episodes a year, but he can have that many in a DAY) this changes without notice. The medication isn't a cure, it is an adjustment. We still have to continue with behavior modification, and he still cycles, but not to the severe degree that he was reaching prior to hospitalization. I know that puberty is going to play havoc with med levels, but I am prepared for that (I think).
Update 4/11/98
Jeremy has had to go to the hospital again. this is the first repeat visit since he was diagnosed seventeen months ago. Actually, I am told that is a long spell for being hospital free at this stage in his disorder. The psychiatrist attributes that to the fact that I have learned a lot about the disorder and I stay VERY on top of Jeremy's cycles and meds. I also stay in close communication with him and the Therapist. The increase in the Lithium and Wellbutrin were not enough this time. Jeremy became increasingly depressed and angry. He began slipping away from me. His psychiatrist and I were already starting to work on adding a new medication, but he had a bad reaction to the Risperidol. Before we could try another new med, Jeremy had done something irreversible. He put our two cats (which he loves dearly and who are the best calmers we have found when he is frustrated) in danger, and this resulted in their death. He did not intend to harm them, he just used some very poor judgement, then suffered from a memory lapse (this can be a symptom of BP change of cycles) and forgot to let them out of where he put them to keep them from eating the dog's food. Jeremy was so remorseful that he began planning his own death. I immediately called both his therapist and his child/adolescent psychiatrist and everyone agreed that the only thing left was to get him to the hospital and get him stabilized. He was only there for 5 days. I never thought that a short stay would be harder on me than the 3 week one when he was diagnosed, but it was. I wasn't prepared to rush him in like that. He cried and begged me not to punish him by putting him away. He couldn't seem to understand that it wasn't a punishment at all. I was afraid he needed me more than I could see him while he was there. In the end they added Zyprexa to his medication. He got past the active suicidal wish, but he still isn't through with the cycling. He isn't over the depression. We have moved him to almost full day resource at school to relieve some of the stress he has been experiencing.
I am still praying that we will get past his puberty with both of us intact.
Update 10/7/98
Well, we had a good summer and it is a new school year. We have pulled him back out of resource this year. He is in 6th grade now. His district has K-8 on one campus, so he is still at the same school. We are trying something new for them. He attends all of his regular classes except that we have combined his Reading and Language (the areas he is strongest in). The math work is modified since he has a learning disability in that subject area. The free period caused by combining the other two classes is scheduled for the last one of the day. He has a one-on-one session with an aide (she has a lot of patience) to complete any work he had difficulty completing during the day. This seems to be working. He is not under the stresses that he was during the end of last year and we are not constantly fighting the homework battle as he can complete that with the aide also.
He is still taking the Zyprexa in addition to the Lithobid and Wellbutrin, but at a lower dose than what was used to stabilize him.
He is 11 now, and has a "girlfriend" at school. No, he isn't allowed to date! But puberty is hitting early. Life marches on.
________________________________________________________________________________________
Other People's Personal Stories
Arlene and Michael:
When it comes to helping a child, I have decided that my family's life is an open book! Don't hesitate to ask ANYTHING of me!
My son, Michael has ADHD, Obsessive-Compulsive Disorder, Oppositional Defiance Disorder, Bi-Polar Disorder and Tourette's Syndrome - a big plate full, for sure. In my journey through the Internet, I have met many parent' whose children also have these disorders, especially the first three.
As you can imagine, multiple conditions can make the diagnosis and treatment even more complicated. If Roy is exhibiting symptoms of rage or irritability, for example, it could be from the Tourette's OR from another disorder. There is medical evidence to support this. In my son's case, it took three years before his separate disorders were diagnosed and treated.
To give you a better idea of our family's situation, I''m going to give you a (hopefully!) brief rundown of Michael's history. I hope that some of this information might give you some insight and understanding, and perhaps courage.
Michael's older brother was born, pink, healthy, and screaming - the "usual" baby. Michael, on the other hand, was born blue, limp, and not breathing. (The cord was wrapped twice around his neck.) But after receiving oxygen, he seemed to rally quite well. His pediatrician told us that Michael had been in fetal distress, apparently for some time, and appeared to have lost weight in utero. He told us that "about 3 to 5% of children with these problems have learning disabilities." If only we could have predicted the rest so easily!
Michael was fine until 2 months of age, when he began having episodes of sudden high fevers, nausea, and vomiting. We took him to the best specialists (thank goodness for insurance) who finally determined that Michael had an underdeveloped valve in his stomach. We were told to bear with it - as Michael grew, the valve would eventually mature and things would get better. He continued to have episodes like that weekly. He was a bright little boy, and normal in other ways, if a little underweight. We learned to adapt. The only thing I can remember during this time that might be significant is that Michael was put on a drug called Reglan, in the hope that it would "settle down" that pesky, immature valve and slow down the vomiting. After a couple of weeks on the drug, I noticed that Michael was jerking his shoulder upwards, toward his chin. His doctor immediately stopped the drug, and the jerking gradually ceased. I (smugly) concluded that we were well on our way to "curing" Michael.
When Michael was seven, he had an episode so severe that his doctor had us rush him to the hospital, where it was found that Michael had what is known as a horseshoe kidney - two kidneys that were "grown together at the bottom." This is a surprisingly common condition: however, Michael's was partially obstructed on one side, hence the episodes of fever and vomiting since babyhood! You can imagine how we felt - shock, horror, dismay, and (of course) relief that we finally knew what was wrong.
Michael had a seven-hour operation, which completely corrected the condition. His physical health improved tremendously over the next few moths. He ate everything in sight, and became so physically active that we were basically dealing with "a new Michael."
This is when his teachers and I began to suspect that Michael had ADHD. We think his previous physical illness may have masked the ADHD, but his teacher reported to us that Michael literally "couldn't sit still," and was having a lot of trouble following along in class. So we agreed to have him tested for ADHD, and we decided to put him on Ritalin.
Whether his earlier physical difficulties caused the ADHD and started the ball rolling to the problems that came later, I suppose we'll never know. Theories abound!
After the ADHD was diagnosed, and the Ritalin seemed to work so well, Michael did very well until the middle of third grade (about a year). He then began to retreat to the corner of his classroom, and insisted on holding his jacket over his head most of the time, even in the lunch line and at recess. He complained sometimes that the voices were "bothering him." We assumed (wrongly, we now know) that he was talking about the voices of his classmates. He seemed irritable, especially when the Ritalin wore off. And the ticcing continued, along with attacks of rage, sometimes brought on by conflict, sometimes with no discernible trigger..
Even taking him off the Ritalin didn't change that. We now know that the Ritalin wasn't the "cause" of Michael's tics - although I blamed that, and myself, for a while. Later (much later), when we researched our family history, we found that there was a history of tics and "odd" behavior on Terry's (my husband's) side. And OCD and depression on mine. Unfortunately, there is a lot of shame connected to these disorders, and our families haven't been any help. And since Tourette's is rather uncommon, it is difficult to talk to other people with the disorder. Without the Internet, I don't know what we'd do!
Since these problems seemed to be behavioral in nature, his teacher (who I plan someday to recommend for sainthood!) advised us to wait things out. And we did. For two years! During this time, Michael went from a bright, happy little boy to a child I can only term "a holy terror." Sullen, disrespectful, irritable, refused to learn or participate in class, and on and on. Also during this time, we worked with his doctors and teachers to try to manage his condition. Several types of therapy and medication were tried, and failed. His doctors admitted that they were stymied. Nothing in their literature or experience could help them actually give a name to what was going on with Michael, other than the obvious depression they were seeing.
Unfortunately, his doctors were working under the standard assumption that "children can be badly behaved, but mental illness in children is rare." And we had no reason to believe otherwise. In the past few years, the medical community has changed its attitude, but unfortunately it may be many more years before that knowledge "trickles down" to the rest of society. I do what I can
This is when we saw a gradual return of the ticcing behavior. Severe, multiple tics, which involved all of his upper body at times. Not too much at school; he seemed to have some control over them. His entire being seemed to be consumed with rage, depression, defiance and hopelessness. It seemed that he could only give up his defiance with his father and I, and even then, it didn't happen very often. During his lucid times, he would cry and say, "Mom, Dad, I don't know why I act this way. I need help." And we had no more help to give. We saw the best specialists, tried every treatment we thought might help, and they were of no help at all. No one seemed willing to believe that Michael's behavior was anything but stubborn willfulness, or depression. Although no one was ever brave enough to say "poor parenting" to our face, we found a lot of literature with this assumption. I came out of a lot of school meetings feeling guilty and inadequate!
We gradually gave up, not on Michael himself - he is our son, and we would never give up on him! What we gradually gave up was our hope for a happy future for Michael. I won't go into detail, but you can imagine the state of our hearts and minds during this difficult time. "Anguish" is the only word that even comes close. Our best hope became the one in which Michael, when (not if) he was tried and convicted of some crime, would be placed in a prison or hospital where people were kind to him. A quite "hopeless" hope, for sure!
To illustrate: At one time, we had tried a special school for Michael - a psychoeducational center which contracts with the public school system. His first day of school, he came home and said, quite proudly, "Guess what Mom! I'm the only kid in my class that doesn't have a probation officer!" All I could manage to say was, "That's good, Michael. I'm proud of you." At the time, even THAT was a small measure of comfort!
This next part I will tell with the advantage of hindsight: Michael's father's and mine, his teachers', and his doctors'. All of us have gained greatly in the "hindsight department!"
When Michael was 12 (Summer, 1996), he experienced a psychotic break while attending a psychoeducational summer program (our newest final "last hope") , and had to be hospitalized. It was that 10-day stay that changed all our lives. An ending to much of our anguish, and the beginning of another journey - certainly a better one, but with its own set of detours and roadblocks.
During this stay Michael was finally recognized as possibly Bi-Polar. And Obsessive-Compulsive. Even the word "autism" came up a few times. Disorders even I, with my medical background, had heard little about. He was placed on medications that address these disorders specifically.
Within 72 hours he had "re-connected" with reality, his moods improved and stabilized somewhat, and we once again began to see the re-emergence of that bright, happy (if hyperactive) seven-year old boy who had gone around shouting "Love is TRUE, Mom!" (Something he had picked up from an old cartoon, I think). And love IS true, ya know?
((I am sitting here crying, wondering if I can finish this. But I must - it would be unfair to you (and to our kids) if I didn't tell you about our "happy ending", wouldn't it? ))
Today, Michael (and we) are still working to overcome those "bad years." The bad behavior patters, surely, but also the negative, knee-jerk reactions we had all developed. It helps a little that Michael has very little memory of third through 5th grades. On the downside, he remembers very little of those years academically, either! Be he IS learning again, we are all learning!
It turns out that it is easier for the school to see Michael as Emotional-Behavior Disordered, than it is to see Michael as mentally ill. So his father and I are doing an almost daily, persistant readjustment of "the school's" understanding, attempting to change their attitudes, along with sharing the new knowledge about Michael's disorders on a one-to-one basis. It IS working, but it takes time!
Every time Michael behaves badly, I have to consider, and explain to school staff, that, yes, Michael's behavior was inappropriate, but that it COULD be a manifestation of his mental illness. This can be confusing at times, but it is always worthwhile to give effort into trying to separate the behavior from the illness.
We have just completed his IEP for this school year. It is 13 pages long. But in it, like last year's, lies the foundation for re-building Michael socially and academically. I have recently, and very cautiously, begun to allow myself to hope for that bright and happy future I once envisioned for Michael. But now I can finally, honestly say that, instead of seeing boulders in the road, I see only speedbumps, and the occasional Detour sign.
One of those "bumps" is our continued search for the right combination of medications. (So little is known about the effect of these types of medication in children and teens!) And dealing with the side effects. And dealing with my own periods of depression, which makes me less effective as Michael's advocate. There are others, but none as big or bad as the ones we have already climbed over!
THIS is why I'm sharing this with you - I now believe that EVERY child deserves an outcome like Michael's! And to let a physical, neurological, biochemical or mental handicap stand in the way of that future would be a tragedy of the highest order!
On the other hand, I am realistic enough to believe that no one person can effect this type of change! His father and I (the obvious first choice) were too burned out, and too ignorant of mental illness to know what was wrong and how to fix things. We have learned, of course, but from other people at first. Michael needed many people to make it happen for him; the doctors who were able to finally diagnose him, his teachers, his therapist, and the understanding and patience of many other people in his day-to-day world.
But it only takes one person to start the process! And I truly believe that you can be that person for your child, if only you can find the strength inside yourself. I realize that you may not be able to change anything at all, and please, please don't blame yourself if you fail! Motivating people is a daunting task. There will be other children! And please keep believing that our children will eventually get all the help they need - you and I are not the ONLY people who care!
I was about to conquer the world but then I got distracted by something shiny.
