The Threats.
That is how I think of them. With capital letters. It is very scary to hear your child say they wish someone was dead. Even more scary when that someone is a parent. We all heard/said the "I hate you" line growing up. Usually as teens, occasionally as pre-teens. But when your first grader tells you he wishes his dad was dead and when he goes back to see him he is going to kill him, well, kinda scary. I took him to his regularly scheduled therapy session for his social skills with the nitwit therapist and she said she did not think it was anything to worry about. Nothing to worry about?! How do you figure? She just said that it was no problem. Even though he told how and when he was going to do this she said no worries! He even said why sort of. He wanted his dad dead cuz he would go to hell because he was bad and when he (my son) died he would go to heaven and he would never have to see his dad again. She said just let it go for now and let's see what happens next. At this point I wasn't willing to let it go. The next day he continued to talk about it. He was not ranting, he was just stating what he was going to do. Then he said he would kill himself so he could go to heaven now and would not have to go see his dad again. He was six. What six year old knows what all of this means and is able to put together death and never seeing someone again. I of course explained that this also meant that he could not see me again either if he was dead. (I did not want to get into semantics about killing one's self as being a sin and going to hell, after all he did not have a total grasp on death.) He just said that we would be able to see each other just not his dad. So, I called a group called SASS, and they come to your house and assess the situation to see if the child is in immediate danger and if they have any recommendations. They did not feel the child was in danger at the time with me as I did not have a shotgun which is what he said he would use. In fact I had no guns so none of his "theories" would work. They did feel he needed another visit with the therapist. Again she says nothing to worry about. It is all me that is having a problem....ME?!? I am not the six yr old making threats. I took the SASS referral to a facility that does mental health evaluations. They did feel it was something to worry about. They referred my son to a psychiatrist.
All of this takes place over a period of a couple of months and there was one visit in the meantime with my son going to his father's. This is what the nitwit therapist is using saying my son will not do anything because he had his chance and did not take it. What? So he did not do it yet so there must not be a problem?
My son gets his appointment with the psychiatrist who talks with both of us, then talks to me, then talks to my son. He then calls me back in and sends my son out to the receptionist again. He calls Child Protective Service. They will not investigate because there are no visible marks on the child and he has not actually followed through on the threat to his dad. So I guess that means that until you kill someone or attempt to kill them, there is no help; Threatening is allowed. This is all insane. The psychiatrist then decided that the only course of action is to admit my son to a psych ward. I say I need to think about that. After all, he is only six and that would be really scary to be away like that, for both of us.
I am near tears at this time. I call my mom and she comes over. We call SASS again. I do not want to admit my son. The caseworker comes in and tries to talk to my son, who of course has had enough and will not cooperate. Finally we give him a hairbrush (I think) and tell him he is onstage and would he answer questions now? Yes he will. She feels that my son is safe with me but does have worries about him going back to his dad's. She calls the mental health facility and they state that the child is not in immediate danger and will not take him. She calls the psychiatrist and he states that if I do not admit my son as per his orders, then he will call DCFS on me for medical neglect. She tells me this and now I am really scared. I do not want to admit my son to a psych ward. All of this (I hope) is a cry for help for someone to listen to him. Why does he think his dad should die. Why does he think his dad is mean, what is going on to make him think that? No one asked these questions. Or at least no one asked them and tried to make an actual effort to get my son to say. He was not very forthcoming with answers and everyone just let it go.
We did reach a compromise. Instead of admitting my son full time, he could go for outpatient therapy. He would go Monday-Friday for parial days and recieve therapy from several different people. The solution here? Tell this little boy that threatening to kill someone is mean and he should not say it. I still do not know why he made the threats. They did not ask according to the people that would actually talk to me. Then they tell me they want to call his father and gather information from him. I am reluctant. After all, if a child is being hurt by someone, you don't call them and say, hey this kid is ratting you out. She insisted that she would not tell him anything. She pestered me until I gave the number to her. She lied. She told him what was going on and that my son made threats, and she wanted to talk to him. Isn't that nice. Let's tell the man that was doing who knows what to my child all about the accusations he (my son) was making so he has a chance to come up with a good defense. When the time comes to end the two week session of daily visits, they ask me for an evaluation of their assessment and how they dealt with the situation. I told them they did not do anything except let his dad, the very person my son threatened to kill know that my son was trying to tell what was going on and that telling my son not to say does not mean that he won't do it. Now we just won't know what is going on in his head. They seemed shocked that I said these things, but if I do not help my son, who will.
My son goes back to school for a week or two before his next visit with his dad. He (my son) is very adamant that he does not want to go. I thought about telling his dad that he did not want to go, could we skip this one, but knew from past experience that he did not care what my son wanted, it was all about him (the dad). His dad would no sooner let my son miss a visit my son did not want than fly to the moon. So, I took him to meet halfway with all my trepidations, I watched him fight and argue about going, I told him he would be able to come home in two weeks. That was not too terribly long. It would be over before he knew it. I would call every day if he wanted me to. He did want me to.
This was in March of 2007. I have never brought my son home again.
Friday, September 19, 2008
Friday, September 5, 2008
The Jouney Continues
Autism.
Just hearing it makes a mom's heart go racing. Fortunately for me, my son is not "autistic".
After the visit with the nuerologist we made the appointment with the doctor that he referred us to. This one has a title of pediatric development and behavioral doctor, or some such thing. This doctor was extremely informative, very friendly, and most importantly was able to have a conversation with my son. Who wonder of wonders was not hateful to him. Actually, he bordered on chatty, which was rather unusual for him. Not always or for long periods of time, but cooperative. For once...
We come prepared with the forms that were filled out by relatives and teachers. Once he reviewed them, he had a whole other series of questions for me and my son. He observed my son in the room and talked with him. We had a couple of visits of this that each lasted for quite some time, certainly not the usual 10 minutes and we're outta there type of thing. As much as two hours. Which by the way is a really long time to sit in a doctor's office, for kids as well as adults. Finally the doctor is ready to give an aswer. It is not autism in the true sense of the word. He says it is something called Asperger's Syndrome. Say that again?! Asperger's. Oh yeah, and the reason he is so difficult is he has something called Oppositional Defiant disorder. So he's crabby and it's not something I did? Hooray! I thought I was doing something wrong. So the social difficulties are not my fault either? Hooray again! Not that I want my son to have any problems, it is just a relief to know I was not a complete failure at being a mom. I mean, my son has had me in tears before with his attitude and I thought it was something I was or wasn't doing. Now how do we fix it? Is it like the acid reflux, we just give a pill? (Kinda sad when even as adults we think that there is a pill for everything.) No, no pills, but we can help him.
As hard as it has been with me with his mood swings and irritability, of course it was even worse for my son. Who did not know why he felt the way he did. Or why the kids did not want to play with him, or why the kids were mean to him. Why was everything so hard for him. You know those questions you really can't answer as an adult to the satisfaction of a child.
The doctor recommends social therapy. Says social therapy will teach my son social skills, which he is seriously lacking. It should teach him how to interact with others, to figure out what they mean, learn how to make and take a joke. Learn how to be "normal", just like the other kids. Learn how to play with kids. Learn how to play. It takes a little while to find a therapist on the insurance that I had. There was not really a lot of options for therapy with the insurance we had. We ended up going to the local childrens services facility. We were assigned a social worker who I was not sure I liked but since we did not have any other options went with her anyway. I think this social worker lived in another world. She was trying to teach my son social skills that would have worked in the 50's perhaps. Or maybe in Mr. Roger's neighborhood. But after a few weeks, my son said he thought he liked her. He actually talked to her some. She still to me seemed as if she was missing a few important points, but if my son liked her, okee-dokee. I did not think she helped a whole lot, as she kept her head in Mr. Roger's neighborhood, but my son did learn to adapt some. They did discuss issues that my son felt he was having in school, things the kids "did" to him, and how he could have reacted differently and what the other child's response would have then been. I also talked to his teacher in kindergarten about encouraging him to join the other kids in play and she was more than helpful with it. She said that sometimes though he would ask the kids to play what he was playing with and when they said no they were already playing something, he took it as a personal attack that they did not want to play with him. The teacher was more than willing to help keep an eye on him and talk to him when that happened. I do believe just the teacher helping is what made improvement with his social skills. The therapist just was not up to par in my book. After a while my son started saying he did not want to go back to the social worker/therapist. No reason, just don't want to go. I don't like her anymore. No reason, just don't.
By this time he is in first grade and we are having all sorts of problems with the teacher. She is brand new and has strange ideas of what 6 year olds are capable of. Like writing 50 sentances in one evening. Yes, I said 50. Now I agreed that my son was in the wrong that day, but thought that was excessive. I made him write some, but not all. After all, this was a private school and the tuition I paid is what pays her salary. She works for me, and if I think 50 is too many then I am the parent and what I say goes. The response was that I was undermining her authority. Of course, this was not the first time I "removed" a punishment that I thought was too harsh for small children. With 6 year olds, you make them have a time out from recess or no recess, send them to the office to have their parents called. That would sure be embarassing. Or don't let them have the free time in class. You don't make them sit at the front office for an "inservice" at a desk all day like you would older children, or make them write 50 sentances in one evening. Now, I know that some of this is the Aspergers and some is the ODD (oppositional defiant disorder). You have to have very set rules and plans for the day for someone like my child. When things don't progress in the day like he thinks they should, or like yesterday did, it is just too much to handle. Then he tends to get out of control. He gets rather anxious and upset. And because my son who used to love school now hates it, I decide perhaps I need to start going to the school to see what the problem is. I start going on my lunch hour. This coincided with the time he was at recess. I did go when he was in kindergarten, but was made extremely welcome by the teacher. This teacher for first grade, not so welcoming. I would watch him interact with the kids, sometimes playing along with all of them. Sometimes talked to the teachers and parents out on the playground watching the kids if my son was standing in the time out area to see what his problem was. My concern was how can I find out what is going on if I don't go and see for myself. Am I supposed to take the word of a 5-6 year old child who doesn't have a good understanding of social rules and just jump to conclusions, or go and see? I would prefer to go and see. I do not believe that my son lied to me, just did not see things the way everyone else would. I would like to note that other parents go to the school and give time, check on their kids, or just hang out. It seems it was only a problem with me because I put some of the blame on the teacher. I actually now work with another mom with children at this school and she went all day everyday for two weeks to see what was going on when her son's grades fell. No one said anything to her. But she was not trying to make any complaints against a teacher.
I felt like I had a lot on my plate with everything that was going on in the therapy and at the school. My son made some progress only to fall back a lot. I was not sure if this was normal or not. The therapist just was not overly intelligent in my book. And I was receiving a lot of resistance from the teacher and principal at the school. All I wanted was to help my son and keep him from having such a hard time. Isn't that what all parents want to do? Smooth out some of the bumps in front of their children? I just did not want my son to be so unhappy. And at end of 2006 all hell broke loose. This is when the threats began.........
Just hearing it makes a mom's heart go racing. Fortunately for me, my son is not "autistic".
After the visit with the nuerologist we made the appointment with the doctor that he referred us to. This one has a title of pediatric development and behavioral doctor, or some such thing. This doctor was extremely informative, very friendly, and most importantly was able to have a conversation with my son. Who wonder of wonders was not hateful to him. Actually, he bordered on chatty, which was rather unusual for him. Not always or for long periods of time, but cooperative. For once...
We come prepared with the forms that were filled out by relatives and teachers. Once he reviewed them, he had a whole other series of questions for me and my son. He observed my son in the room and talked with him. We had a couple of visits of this that each lasted for quite some time, certainly not the usual 10 minutes and we're outta there type of thing. As much as two hours. Which by the way is a really long time to sit in a doctor's office, for kids as well as adults. Finally the doctor is ready to give an aswer. It is not autism in the true sense of the word. He says it is something called Asperger's Syndrome. Say that again?! Asperger's. Oh yeah, and the reason he is so difficult is he has something called Oppositional Defiant disorder. So he's crabby and it's not something I did? Hooray! I thought I was doing something wrong. So the social difficulties are not my fault either? Hooray again! Not that I want my son to have any problems, it is just a relief to know I was not a complete failure at being a mom. I mean, my son has had me in tears before with his attitude and I thought it was something I was or wasn't doing. Now how do we fix it? Is it like the acid reflux, we just give a pill? (Kinda sad when even as adults we think that there is a pill for everything.) No, no pills, but we can help him.
As hard as it has been with me with his mood swings and irritability, of course it was even worse for my son. Who did not know why he felt the way he did. Or why the kids did not want to play with him, or why the kids were mean to him. Why was everything so hard for him. You know those questions you really can't answer as an adult to the satisfaction of a child.
The doctor recommends social therapy. Says social therapy will teach my son social skills, which he is seriously lacking. It should teach him how to interact with others, to figure out what they mean, learn how to make and take a joke. Learn how to be "normal", just like the other kids. Learn how to play with kids. Learn how to play. It takes a little while to find a therapist on the insurance that I had. There was not really a lot of options for therapy with the insurance we had. We ended up going to the local childrens services facility. We were assigned a social worker who I was not sure I liked but since we did not have any other options went with her anyway. I think this social worker lived in another world. She was trying to teach my son social skills that would have worked in the 50's perhaps. Or maybe in Mr. Roger's neighborhood. But after a few weeks, my son said he thought he liked her. He actually talked to her some. She still to me seemed as if she was missing a few important points, but if my son liked her, okee-dokee. I did not think she helped a whole lot, as she kept her head in Mr. Roger's neighborhood, but my son did learn to adapt some. They did discuss issues that my son felt he was having in school, things the kids "did" to him, and how he could have reacted differently and what the other child's response would have then been. I also talked to his teacher in kindergarten about encouraging him to join the other kids in play and she was more than helpful with it. She said that sometimes though he would ask the kids to play what he was playing with and when they said no they were already playing something, he took it as a personal attack that they did not want to play with him. The teacher was more than willing to help keep an eye on him and talk to him when that happened. I do believe just the teacher helping is what made improvement with his social skills. The therapist just was not up to par in my book. After a while my son started saying he did not want to go back to the social worker/therapist. No reason, just don't want to go. I don't like her anymore. No reason, just don't.
By this time he is in first grade and we are having all sorts of problems with the teacher. She is brand new and has strange ideas of what 6 year olds are capable of. Like writing 50 sentances in one evening. Yes, I said 50. Now I agreed that my son was in the wrong that day, but thought that was excessive. I made him write some, but not all. After all, this was a private school and the tuition I paid is what pays her salary. She works for me, and if I think 50 is too many then I am the parent and what I say goes. The response was that I was undermining her authority. Of course, this was not the first time I "removed" a punishment that I thought was too harsh for small children. With 6 year olds, you make them have a time out from recess or no recess, send them to the office to have their parents called. That would sure be embarassing. Or don't let them have the free time in class. You don't make them sit at the front office for an "inservice" at a desk all day like you would older children, or make them write 50 sentances in one evening. Now, I know that some of this is the Aspergers and some is the ODD (oppositional defiant disorder). You have to have very set rules and plans for the day for someone like my child. When things don't progress in the day like he thinks they should, or like yesterday did, it is just too much to handle. Then he tends to get out of control. He gets rather anxious and upset. And because my son who used to love school now hates it, I decide perhaps I need to start going to the school to see what the problem is. I start going on my lunch hour. This coincided with the time he was at recess. I did go when he was in kindergarten, but was made extremely welcome by the teacher. This teacher for first grade, not so welcoming. I would watch him interact with the kids, sometimes playing along with all of them. Sometimes talked to the teachers and parents out on the playground watching the kids if my son was standing in the time out area to see what his problem was. My concern was how can I find out what is going on if I don't go and see for myself. Am I supposed to take the word of a 5-6 year old child who doesn't have a good understanding of social rules and just jump to conclusions, or go and see? I would prefer to go and see. I do not believe that my son lied to me, just did not see things the way everyone else would. I would like to note that other parents go to the school and give time, check on their kids, or just hang out. It seems it was only a problem with me because I put some of the blame on the teacher. I actually now work with another mom with children at this school and she went all day everyday for two weeks to see what was going on when her son's grades fell. No one said anything to her. But she was not trying to make any complaints against a teacher.
I felt like I had a lot on my plate with everything that was going on in the therapy and at the school. My son made some progress only to fall back a lot. I was not sure if this was normal or not. The therapist just was not overly intelligent in my book. And I was receiving a lot of resistance from the teacher and principal at the school. All I wanted was to help my son and keep him from having such a hard time. Isn't that what all parents want to do? Smooth out some of the bumps in front of their children? I just did not want my son to be so unhappy. And at end of 2006 all hell broke loose. This is when the threats began.........
Friday, August 29, 2008
The Journey to Discovery
Now the journey to find out what is wrong with my little boy. This new pediatrician is an elderly gentleman and just seems full of confidence that we will discover why my boy keeps getting sick. First the food diary. Did not help find any answers but was interesting to see in black and white exactly what he ate every day. Next we tried an enzyme. I no longer remember what it was called, just remember that the doc suggested it since my son was puking up actual pieces of food. Thought maybe he did not have enough of the enzyme in the stomach to digest the food and it was occasionally coming up. We tried this for a while to no avail either.
And as if this was not enough to try to work through, my son's doc notices that my son is not really verbal yet. Have you ever heard of Autism? he asks me. I had in the general sense of "kids banging there heads on the walls or crib rails, flapping thier arms" sort of way. Oh NO my son is NOT autistic. Thankfully he let it drop and focused again on the episodes. So he sends my son to a (let me see if I can spell this properly!) pediatric gastroenterologist. (say that fast three times in a row.) This doctor is concerned by the length of the episodes. Says most people throw up once or twice and then are done not several times in a row, for hours at a time. He decides my son needs to have some sort of digestion test, a colonoscopy and an endoscopy. I did not even know what an endoscopy was. He told me in layman's terms that they would stick a scope in both ends to see what they could find. (Different ones of course, not the same one twice! of course hehe) The digestion test was first since it was painless. Basically I take him to the xray dept of the hospital, they feed him a special breakfast. I joke that it was radioactive, but it was treated so the techs could see it in the digestive tract. All my son had to do was eat and then stand still for an xray shot. The only thing they found was that his food digested a little slower than what was usual, but not abnormally slow. All was okay on this front. Next the scary tests. We scheduled the scopes. My son could not eat for two days prior, only clear liquids. Man and I thought he was crabby before. Try putting a child that seems to not understand what you tell him on a liquid diet and tell him he can't eat. Just have some more liquid when all he wants is food. We made it through the two days. Now is the day of the tests. I am terrified. He could have cancer; He could have a reaction to the anesthetic; He could not wake up; He could die on the table; I was a basket case. Good thing my mom was there. Plus I had not eaten anything solid for two days either. I felt bad because my little one could not eat, so neither did I. I look back now and think that I probably should have eaten so when the tests were going on, I was not so light headed and could have been a little bit clearer thinking. Well we know what they say about hindsight....
Anyway, the tests. The results were given immediatley. They took pictures with the scopes, how neat is that, and were able to tell right away what was wrong. Here is a picture of his intestines-we were looking for polyps (sp?) and anything else strange. It all looked fine. Then here is a picture of his esophogus. Look at these tracks. This is from acid reflux. My response- kids can have acid reflux? Yes they can, actually kids can be born with it.
I can't even begin to describe how glad I was that it was acid reflux, not a death sentance, yes I know dramatic, but I was scared. Now I knew why he was crabby, his throat hurt all the time. And his stomach hurt all the time. The doctor prescribed Prevacid. He did not have cancer- I was elated.
Of course none of this was as easy as it sounds. All together this took about two years, with many trips to the doctor, many different trials including a gluten free diet, and lots and lots of episodes of vomiting and diarrhea and a trip or two to the emergency room over it. I was just so glad of a diagnosis and something to treat it with.
In the meantime, with all of the "explosion episodes" going on, my doctor grows increasingly concered over my son's strange behaviors. He took an unusually long time to start talking. He collects strange things, like "strings". By strings I mean anything long: string, cords, bungee cords, rope, chain, straps, belts, you get the idea? He had to carry them around with him everywhere he went, including into the bathroom at bathtime. Strange indeed. I figured just a kid thing. I did notice however that he did not play well with others. This started at his daycare, playing beside, but not with. Ignoring the other kids, not cooperating when he did try to play with them. I then enrolled him in preschool thinking that he needed more structure in his daytime routine. He still had some issues. By this time he is extremely verbal. We call him the little professor because of the way he speaks using big words, almost always correct grammer, and not ever joking around. Very, Very serious. I just chalked it up to all kids are different. Some are just always serious, some always playful, just all different. The doctor tells me that he thinks my son's IQ is probably somewhere up in the 120-125 range. Which of course doesn't mean anything to me. My son is smart, my son is cute, my son is "perfect". Isn't that what all parents think? No, he says, not all kids are smart or cute, but this one is smart. Then comes the awful word of Autism again. He gives me a form that is to be filled out by all the folks involved in his daily care. By now he is in Kindergarten. The teacher fills out a form, I do, my mom does. We take these to the doctor and he now refers me to a pediatric neurologist. I can't help but think at this point hasn't my son gone through enough. Little did I know the worst was yet to come for my baby ( I use this term loosely as he at this point 5.) We drive over to the neurologist who of course is about 45 minutes away, not one in my town to go to. He gives me lots of questions and "examines" my son's behaviors while at this office visit. He asks my son questions, and since he is so verbal is able to answer anything the doctor asks. BUT, he is very hateful in all of his responses. The doctor leaves the room for a few minutes and I remember asking my son why he was being hateful. It was just because the doctor was asking too many questions in my son's opinion, he was busy playing with his strings and the doctor was bothering him. I tell him to be nice whether he wants to or not. The doctor comes back. His determination: Autism. He gives me a referral to a doctor who works with kids with delays and disabilities, in the same office at least. I am devastated. I am envisioning a life with a child with major problems and can't get along in society. Mind you his problems to this point have been relatively mild, just failure to develop socially, and the super serious attitude. And the ever present irritability.
I would like to mention at this time in my son's life, his father is adament that my son does not display any strange behavior, even though everyone, including the doctors, has seen it. He also was adamant for many months that my son never threw up when he was down there. Now that the diagnosis for acid reflux was out there and my son was very verbal and could tell me each time he threw up, his father did admit that "he has thrown up a few times, I guess."
After the prevacid was started, I think that my son only threw up a couple of times, when he had a stomach virus. Not more than once or twice a year. No more diarrhea like he had before either. What a relief to all of us.
Now I was going to have to deal with Autism and whatever that meant.....
And as if this was not enough to try to work through, my son's doc notices that my son is not really verbal yet. Have you ever heard of Autism? he asks me. I had in the general sense of "kids banging there heads on the walls or crib rails, flapping thier arms" sort of way. Oh NO my son is NOT autistic. Thankfully he let it drop and focused again on the episodes. So he sends my son to a (let me see if I can spell this properly!) pediatric gastroenterologist. (say that fast three times in a row.) This doctor is concerned by the length of the episodes. Says most people throw up once or twice and then are done not several times in a row, for hours at a time. He decides my son needs to have some sort of digestion test, a colonoscopy and an endoscopy. I did not even know what an endoscopy was. He told me in layman's terms that they would stick a scope in both ends to see what they could find. (Different ones of course, not the same one twice! of course hehe) The digestion test was first since it was painless. Basically I take him to the xray dept of the hospital, they feed him a special breakfast. I joke that it was radioactive, but it was treated so the techs could see it in the digestive tract. All my son had to do was eat and then stand still for an xray shot. The only thing they found was that his food digested a little slower than what was usual, but not abnormally slow. All was okay on this front. Next the scary tests. We scheduled the scopes. My son could not eat for two days prior, only clear liquids. Man and I thought he was crabby before. Try putting a child that seems to not understand what you tell him on a liquid diet and tell him he can't eat. Just have some more liquid when all he wants is food. We made it through the two days. Now is the day of the tests. I am terrified. He could have cancer; He could have a reaction to the anesthetic; He could not wake up; He could die on the table; I was a basket case. Good thing my mom was there. Plus I had not eaten anything solid for two days either. I felt bad because my little one could not eat, so neither did I. I look back now and think that I probably should have eaten so when the tests were going on, I was not so light headed and could have been a little bit clearer thinking. Well we know what they say about hindsight....
Anyway, the tests. The results were given immediatley. They took pictures with the scopes, how neat is that, and were able to tell right away what was wrong. Here is a picture of his intestines-we were looking for polyps (sp?) and anything else strange. It all looked fine. Then here is a picture of his esophogus. Look at these tracks. This is from acid reflux. My response- kids can have acid reflux? Yes they can, actually kids can be born with it.
I can't even begin to describe how glad I was that it was acid reflux, not a death sentance, yes I know dramatic, but I was scared. Now I knew why he was crabby, his throat hurt all the time. And his stomach hurt all the time. The doctor prescribed Prevacid. He did not have cancer- I was elated.
Of course none of this was as easy as it sounds. All together this took about two years, with many trips to the doctor, many different trials including a gluten free diet, and lots and lots of episodes of vomiting and diarrhea and a trip or two to the emergency room over it. I was just so glad of a diagnosis and something to treat it with.
In the meantime, with all of the "explosion episodes" going on, my doctor grows increasingly concered over my son's strange behaviors. He took an unusually long time to start talking. He collects strange things, like "strings". By strings I mean anything long: string, cords, bungee cords, rope, chain, straps, belts, you get the idea? He had to carry them around with him everywhere he went, including into the bathroom at bathtime. Strange indeed. I figured just a kid thing. I did notice however that he did not play well with others. This started at his daycare, playing beside, but not with. Ignoring the other kids, not cooperating when he did try to play with them. I then enrolled him in preschool thinking that he needed more structure in his daytime routine. He still had some issues. By this time he is extremely verbal. We call him the little professor because of the way he speaks using big words, almost always correct grammer, and not ever joking around. Very, Very serious. I just chalked it up to all kids are different. Some are just always serious, some always playful, just all different. The doctor tells me that he thinks my son's IQ is probably somewhere up in the 120-125 range. Which of course doesn't mean anything to me. My son is smart, my son is cute, my son is "perfect". Isn't that what all parents think? No, he says, not all kids are smart or cute, but this one is smart. Then comes the awful word of Autism again. He gives me a form that is to be filled out by all the folks involved in his daily care. By now he is in Kindergarten. The teacher fills out a form, I do, my mom does. We take these to the doctor and he now refers me to a pediatric neurologist. I can't help but think at this point hasn't my son gone through enough. Little did I know the worst was yet to come for my baby ( I use this term loosely as he at this point 5.) We drive over to the neurologist who of course is about 45 minutes away, not one in my town to go to. He gives me lots of questions and "examines" my son's behaviors while at this office visit. He asks my son questions, and since he is so verbal is able to answer anything the doctor asks. BUT, he is very hateful in all of his responses. The doctor leaves the room for a few minutes and I remember asking my son why he was being hateful. It was just because the doctor was asking too many questions in my son's opinion, he was busy playing with his strings and the doctor was bothering him. I tell him to be nice whether he wants to or not. The doctor comes back. His determination: Autism. He gives me a referral to a doctor who works with kids with delays and disabilities, in the same office at least. I am devastated. I am envisioning a life with a child with major problems and can't get along in society. Mind you his problems to this point have been relatively mild, just failure to develop socially, and the super serious attitude. And the ever present irritability.
I would like to mention at this time in my son's life, his father is adament that my son does not display any strange behavior, even though everyone, including the doctors, has seen it. He also was adamant for many months that my son never threw up when he was down there. Now that the diagnosis for acid reflux was out there and my son was very verbal and could tell me each time he threw up, his father did admit that "he has thrown up a few times, I guess."
After the prevacid was started, I think that my son only threw up a couple of times, when he had a stomach virus. Not more than once or twice a year. No more diarrhea like he had before either. What a relief to all of us.
Now I was going to have to deal with Autism and whatever that meant.....
The Beginning
When my son was two years old, he began having episodes of vomiting and diarrhea. Not daily, not even weekly. Just once or twice a month. This was obviously of concern to me as he did not have a history of this. Even as an infant he rarely spit up. I nursed him exclusively for several months and I can only remember him spitting up a few times. Once of course was on my sister when I was home for a visit. She told me that she was rather grossed out by the though that the little cutie just upchucked her sister's breastmilk all over her shoulder. She said that formula would have been bad enough, but breastmilk was just too much! We just wiped it off and decided it was better than formula though as it would wash out and not stain her shirt like formula would have. Plus it was not so stinky. Anyway, he was not a puker. Then this puking started. We aren't talking throw up once and be done with it, we are talking throw up that was so acidic that it burned your nostrils if you were too close to it. Imagine what my poor little boy's throat felt like. He would vomit several times in a row, stop for a short while only for it to start again. We would do this for several hours. We went through a lot of towels trying to catch it so it would not get all over the mattresses. Finally he would stop throwing up and could fall to sleep for a while. Oh, but we're not done yet! Then began the diarrhea. For most of the rest of the day, acidic smelling diarrhea. Makes me wonder what his poor little bum felt like, if it burned coming out like it smelled like it should. The first couple of times really scared me. Oh, hell, who am I kidding, all the times really scared me. I wanted to know what was wrong with my baby. So, I took him to the doctor. Of course she wanted to know what he had to eat in the past few days. Here is where the interesting part comes in. I did not know. This all started the first time my two year old baby had to go to his dad's house for a week. I did not know anything as my son did not talk except in a few one or two word sentances. Mostly pointed to what he wanted. He was not really very verbal yet. And of course his father did not tell me anything. I did not know what or if he ate, when or how much he slept, if he played, nothing. I could not tell her. So she did a stool sample to make sure it was not a parasite or anything like that. Said to follow the "BRAT" diet. Which we did. And a couple of days later, physically, it was like it never happened. However, my little boy was never the same. He became angry, sullen, got into trouble at the sitter's house, and was irratable at home. Since he was not really verbal enough to talk about it, I went to the doctor again. I tried to explain the huge change in behavior, noted by everyone involved in his day-to-day life, not just me. She said not to worry. Too bad, I am worried, could he be sick and just not able to tell me what is wrong? No, there is nothing wrong, I am just over-reacting. Soon, this is followed by not eating well, and still all the crabby-pants behavior. I do not remember now if he threw up again before he went to his father's for another visit, but I do know that he got sick again when he got back. So, back to the doctor. Could something he ate at his dad's be making him sick, like an allergy or something. This time she did decide to run some tests. She ordered some blood work and stool sample tests. I do not know what they were looking for, just remember the gut wrenching feeling when we had to hold down my baby boy to draw blood. If you have ever had to sit there and hold your child while someone sticks a needle in their arm for drawing blood and listen to your baby cry, you know the feeling I refer to. It is awful. We got the test results back. Nothing. Why then does my little boy keep having these "explosion" episodes? Why is he so irritable? No one had any answers. I finally went to a pediatrician. The previous doctor was a family doctor and perhaps, I felt, not up to date with all things pediatric. This new pediatrician did not for once doubt my story, which was a refreshing change from the previous doctor. He recommended trying several things for these "episodes". First being a food diary to see if we could find the culprit that way. Now why did the first doctor not recommend that? Super idea, so we tried it. And many other things.....And thus began the journey to discovery.......
Friday, August 22, 2008
My Story Part II
I recently wrote to my hound friend, SunEday, that if only I could get my son home, I was going to go public with my story so that other women in my situation would know that they are not alone, and hopefully create enough of a stir to stop this abuse in its tracks. What I planned on doing if only I could get my son home was to start some kind of campaign to stop MSBP from being used in court in the US. I wanted to have consequenses for the actions of folks who think it is okay to throw this term around and wreck lives. I want there to be laws against allowing this "syndrome" from being used in court. In the UK, this "syndrome" has been discredited and any cases where children were taken and motheres accused are being brought back and reviewed. Why is it still allowed in the good ole US of A? Other countries are also starting to question this "diagnosis". Why not the US? Don't we have rights to be innocent until proven guilty? I have since decided upon learning that I will not be bringing my son home, that I will do this anyway. I do not want to change the world. I just want to protect other mothers and thier children. This should not have happened to me and I want to help prevent it from happening to others. Someone needs to put aside thier fear of being labeled a child abuser and stop this madness. I will stand up, and I will not be afraid for myself.
I will, however be afraid for my son. I will worry about his acid reflux, his fears, and the abuse he receives at the hands of the courts, his dad, and the whole system. It is not only my life being wrecked by being accused, it is also my son's life. He was coasting along in life living with me, then one day is told he can never go home. How is that okay for someone to decide? How is that okay for anyone to toss this "syndrome" out there about someone falsely? How can there be no consequence for people to make these accusations with no proof, cause someome (almost always the mother in the case of MSBP) to lose thier child, and expect that all will be okay? Does the one who makes the accusation get to say to themselves I did not hurt anyone by saying this? Does the one who makes the accusation get to pretend to the world that they had the child's best interest at heart? If the accuser had the child's best interest at heart, why in this case was the Dept of Children and Family Services not called? Is that not the protocal for turning someone in for child abuse? Of course the accuser in this case did not call DCFS. I had not actually done anything wrong. DCFS can't help take my child away and give custody to my ex if they don't find any abuse. At the risk of sounding paranoid, the original accuser in my case had reason to slander me. I was protecting my son's rights at school. I would go to the school any time my son complained about a problem that did not get resolved. I would talk to the teacher or the principal. I would go to the playground at recess where he said other children bullied him. I would defend his rights as a person to not be a victim of bullies and an unrealistic teacher. I did make complaints against the teacher. That is my right as a parent. If I feel she is not doing her job, it is my responsibility to protect my child. So the principal of the school saw a way to get back at me. Tell my ex that I am crazy. She makes it all up. The problems at school, the acid reflux, the oppositional defiant disorder, and the Asperger's syndrome. Never mind that I had medical records showing the diagnoses that my son received, from a real doctor, not from me; never mind that my son was referred by his pediatrician to see these doctors who diagnosed him. Let's not discuss that part. Let's pretend they don't exist and tell the dad the mom is crazy, that'll get her out of my school. Let's also pretend that we don't know that this poor little boy is in therapy for threatening to kill his dad, with the details of how and when he will do it. Let's get him out of this school and into the hands of the very man this little boy wants to kill. Because in this little boy's mind, if his dad is dead, his dad will go to hell, and then he never has to see him again. "cuz when I die, I will go to heaven, and so will my family (notice he did not include his father in the family category) and dad will be in hell, so I never have to see him again." Gosh, let me think for like a nanosecond of why that scared me! What five year old even has that much of a concept of heaven and hell and thinks about his and others mortality? I don't even know of any 10 year olds who think like that. Maybe some teenagers and certainly adults, but a five year old? That is a problem. But how dare me seek help for my child. There must be something wrong with me. Not my child or the situation that made him think that his dad's death was the answer to anything.
And that is where this downward spiral began....
I will, however be afraid for my son. I will worry about his acid reflux, his fears, and the abuse he receives at the hands of the courts, his dad, and the whole system. It is not only my life being wrecked by being accused, it is also my son's life. He was coasting along in life living with me, then one day is told he can never go home. How is that okay for someone to decide? How is that okay for anyone to toss this "syndrome" out there about someone falsely? How can there be no consequence for people to make these accusations with no proof, cause someome (almost always the mother in the case of MSBP) to lose thier child, and expect that all will be okay? Does the one who makes the accusation get to say to themselves I did not hurt anyone by saying this? Does the one who makes the accusation get to pretend to the world that they had the child's best interest at heart? If the accuser had the child's best interest at heart, why in this case was the Dept of Children and Family Services not called? Is that not the protocal for turning someone in for child abuse? Of course the accuser in this case did not call DCFS. I had not actually done anything wrong. DCFS can't help take my child away and give custody to my ex if they don't find any abuse. At the risk of sounding paranoid, the original accuser in my case had reason to slander me. I was protecting my son's rights at school. I would go to the school any time my son complained about a problem that did not get resolved. I would talk to the teacher or the principal. I would go to the playground at recess where he said other children bullied him. I would defend his rights as a person to not be a victim of bullies and an unrealistic teacher. I did make complaints against the teacher. That is my right as a parent. If I feel she is not doing her job, it is my responsibility to protect my child. So the principal of the school saw a way to get back at me. Tell my ex that I am crazy. She makes it all up. The problems at school, the acid reflux, the oppositional defiant disorder, and the Asperger's syndrome. Never mind that I had medical records showing the diagnoses that my son received, from a real doctor, not from me; never mind that my son was referred by his pediatrician to see these doctors who diagnosed him. Let's not discuss that part. Let's pretend they don't exist and tell the dad the mom is crazy, that'll get her out of my school. Let's also pretend that we don't know that this poor little boy is in therapy for threatening to kill his dad, with the details of how and when he will do it. Let's get him out of this school and into the hands of the very man this little boy wants to kill. Because in this little boy's mind, if his dad is dead, his dad will go to hell, and then he never has to see him again. "cuz when I die, I will go to heaven, and so will my family (notice he did not include his father in the family category) and dad will be in hell, so I never have to see him again." Gosh, let me think for like a nanosecond of why that scared me! What five year old even has that much of a concept of heaven and hell and thinks about his and others mortality? I don't even know of any 10 year olds who think like that. Maybe some teenagers and certainly adults, but a five year old? That is a problem. But how dare me seek help for my child. There must be something wrong with me. Not my child or the situation that made him think that his dad's death was the answer to anything.
And that is where this downward spiral began....
My Story Part I
I am going to share my tale so that others may not have to suffer at the hands of "experts". I am not a writer, just a mom with a heartbreaking circumstance. I will attempt to put my story into words coherently. I know that I am not alone in this agony. This is happening all over the world. Fortunately for mothers in other parts of the world, this witchhunt will soon come to an end. Roy Meadows is being discredited.
Who is Roy Meadows, you ask. Well, he is the man that decided that he was the one to make the decision of whether moms were abusing their children with a syndrome called Munchausen Syndrome by Proxy. There are many websites online to get information on this so-called syndrome, and when a mother sees the list of "symptoms", one will realize why I call this a witchhunt. Basically what it amounts to is any mom "over involved" or "under involved", chooses to get educated on why thier child is having difficulties that no one can diagnose or wants to do further testing (doctors), or just knows that something is wrong that the doctors have yet to determine, you could have this "syndrome". Now comes the kicker: if you claim you have it and say you will seek help (whether you have it or not), just because you want your children back, you can't have them because you might harm them. If you deny you have this "syndrome", you have it because denying it is a symptom, and you don't get your kids back. Once this "diagnosis" is make, you are guilty unless you can prove your innocence. Now tell me how a mother can prove her innocence if by the very act claiming that you are innocent and do not have the "syndrome", you are afflicted with the "syndrome". Quite the quandry, isn't it?
To be continued...
Who is Roy Meadows, you ask. Well, he is the man that decided that he was the one to make the decision of whether moms were abusing their children with a syndrome called Munchausen Syndrome by Proxy. There are many websites online to get information on this so-called syndrome, and when a mother sees the list of "symptoms", one will realize why I call this a witchhunt. Basically what it amounts to is any mom "over involved" or "under involved", chooses to get educated on why thier child is having difficulties that no one can diagnose or wants to do further testing (doctors), or just knows that something is wrong that the doctors have yet to determine, you could have this "syndrome". Now comes the kicker: if you claim you have it and say you will seek help (whether you have it or not), just because you want your children back, you can't have them because you might harm them. If you deny you have this "syndrome", you have it because denying it is a symptom, and you don't get your kids back. Once this "diagnosis" is make, you are guilty unless you can prove your innocence. Now tell me how a mother can prove her innocence if by the very act claiming that you are innocent and do not have the "syndrome", you are afflicted with the "syndrome". Quite the quandry, isn't it?
To be continued...
Tuesday, August 19, 2008
My First Blog!
Today is my first blogging experience. I am thankful to all my hound friends who showed me the way to blogging. I also am thankful to the pound for showing me the way to cheaper--well, everything! and getting some really good recipes! Thanks hounds and pups!
Subscribe to:
Posts (Atom)



