I am really at my wits end , Ive mentioned that my 10 yr old son is ill , and some of you know he has a disorder suspected to be an autism spectrum disorder . This is going to be long sorry for the length.
When my son was 4 he stopped eating for 4 months due to a choking incident we kept him alive on Pedia Sure , when he was in the first grade he was being bullied and started vomiting all the time and loosing the ability to eat he associated food with vomiting, we happen to move during this and all the symptoms stopped.
We moved to VT 2 yrs ago , we had an eval on my son that stated he needed a one to one aid in school , the school refused to provide one they say it breeds dependence. My son this school year has been struggling to meet his educational expectations and all the social expectations that go along with being in school.
in February we asked for an evaluation of Kristopher because he for the first time appeared to be loosing skills , example he lost the ability to spell his name in total Kris opposed to Kristopher , he also couldn't remember or retain the steps to preform tasks like picking up his room or washing himself and operating our front door .
The school granted us an observation ( a step below an evaluation ) at the observation their Dr. told us that Kristopher was doing these things because its part of his executive function deficits , he said that school and home need to take as much stress off Kristopher as we can we need to act as if we are his frontal lobe , he said if the stress isn't taken off that we will loose him he openness his willing ness his good heart. None of there own doctors recommendations were put into play .
In March we had state wide no child left behind 4th grade testing , this caused alot of anxiety in Kristopher , he became fixated on pass or fail even thought we explained that it wasn't that sort of test.He started vomiting , and loosing control of his bowles when the testing started. it would happen a few times a week either he would be sent home sick, or he would be up all night sick crying that he was afraid to go to school , or he would be fine for a while and then on a Sunday night get all upset and sick.
At the start of April he got sick at school and soiled himself at school , he was sent home and he began an awful downward slide , violent bowel accidents violent vomiting , and refusing to eat. we brought him to the doctor who said it was school based anxiety , she prescribed adult diapers told us to encourage food and if he didn't eat for 3 days she would prescribe Ensure.
Three days came and went we called the Dr on a Monday and told her he hadn't eaten , she refused to give him the Ensure , she told us to wait until our next appointment the following Monday , that would have made 10 days without eating, In total Kristopher went 8 solid days without eating food or a food supplement. The Dr's theory was if he got hungry enough he would eat. It was us that put a stop to this we put him on Ensure ourselves .
He went from 130 lbs to 114 in approx 2 weeks , We brought him in for a weight check and she insisted on questioning Kristopher multiple times about why he isn't eating each time he told her what he was telling us , then she wanted to speak to him alone she questioned him again , again he said the same thing , on the 4th volley of questions he said fine Ill eat , she reply , well hes willing to eat so I'm not comfortable prescribing the Ensure.
Kristopher doesn't have the ability to make these kind of statements with the understanding behind it , he told her what she wanted to hear so she would leave him alone.
Then she wanted to send us to a behavioralist , we went to the behavioralist he told us that we should homeschool Kristopher or he will have to make the best of it and go back to school, he said that schools don't have the funds for a tutor or aid , that is not supposed to be his consideration he consideration is supposed to be my son. I explained to him that if we homeschool Kristopher in this state he is not entitled to his special services like OT PT Speech etc thats when he said Kristopher will have to make the best of it. Kristopher laid on the behavioralist couch with his hat over his face he didn't speak much to him.When we left Kristopher said so mom he wants me to just live with it?
We came home and I had , had enough ...I found a new pediatrician ( first appointment date today) who has experience in children with developmental delays , I also managed to find the therapist ( first appointment date yesterday ) that Kristopher worked with when he was 4 during that not eating incident , it was a huge thing for me because she was from NH we didn't know she was in VT now or we would have gone straight to her.
Thursday that just past , the school contacted us by letter saying that the original pediatrician and the behaviorlist say now that Kristopher does not have anxiety and hes fine to return to school , Kristopher hasn't had more than 3 bites of solid food in almost 6 weeks , he is still in a diaper , and he still is terrified about going to school not one thing changed.
Friday the principal and the school nurse came to the door demanding to see Kristopher , now we live in an apartment building there is a security door , there is also no bell so if you want in you have to call us. The security door really made them mad they thought we put it there to stop them , they called from the front porch demanding to see Kristopher , Kristopher was asleep on the couch in the livingroom , which is right next to our front door . I was not going to let my child who is afraid of school to wake up with the principal standing over him. I told the principal that if she wanted to set a time on Monday when he was awake I would be glad to have her meet with Kristopher , she refused said she didn't need to make an appointment to do her job. Well if you want to get past the security door you do. While all of this is going on We are in a meeting with one of the disability agencies , and our daughter Erin is having an OT session , Later that day we were informed that the reason the principal was there was because she felt that Kristopher wasn't really ill and that he was truant. We pointed out that Kristopher was seen by professionals that day both professionals reported to the principal that Kristopher was indeed ill , and sleeping at the time.
Monday this week , they had a meeting about Kristopher at the school , in the meeting minutes they are now backing away from truancy , and are now talking about having child services take a look to see if its a "non classic form of abuse" that has lead to Kristopher's illness.
Tuesday ( this was a good day ) We went to see the therapist that worked with Kristopher when he was 4 , she sees anxiety about school she doesn't think he should just go back she thinks there needs to be changes made to his educational plan and then ease him back.
Wednesday we went to the new pediatrician , she prescribed the Ensure and the diapers along with a letter of medical necessity. She thinks maybe a new school placement for Kristopher is needed .
Now the therapist and the Dr are going to have a confab and talk about whats best for Kristopher , meanwhile the school wants to nail us for some warped form of abuse now that they actually believe that hes ill , the original pediatrician is under investigation from the medical practice board ( not our doing one of the agencies reported her ) because she let Kristopher suffer so much. and the behavioralist was a wasted trip not only that he is quoted by the school as saying he saw no anxiety and Kristopher should go back to school.
Kristopher is now 111 lbs , he still is not eating more than a few bites once a day , he is still in a diaper , hes now having nightmares about school and food .......and I just don't know what to do anymore.
Its long its complex and its personal but someone somewhere may know something that we can do .
I just don't understand how they can even think is "a non classic form of abuse" that made Kristopher ill what in the heck does that mean?
I have a list that Kristopher and I made about his anxiety he talked I wrote it is pervasive through out his entire school day , things I wasn't even aware of.
Ill stop now I'm so tired confused.............
When my son was 4 he stopped eating for 4 months due to a choking incident we kept him alive on Pedia Sure , when he was in the first grade he was being bullied and started vomiting all the time and loosing the ability to eat he associated food with vomiting, we happen to move during this and all the symptoms stopped.
We moved to VT 2 yrs ago , we had an eval on my son that stated he needed a one to one aid in school , the school refused to provide one they say it breeds dependence. My son this school year has been struggling to meet his educational expectations and all the social expectations that go along with being in school.
in February we asked for an evaluation of Kristopher because he for the first time appeared to be loosing skills , example he lost the ability to spell his name in total Kris opposed to Kristopher , he also couldn't remember or retain the steps to preform tasks like picking up his room or washing himself and operating our front door .
The school granted us an observation ( a step below an evaluation ) at the observation their Dr. told us that Kristopher was doing these things because its part of his executive function deficits , he said that school and home need to take as much stress off Kristopher as we can we need to act as if we are his frontal lobe , he said if the stress isn't taken off that we will loose him he openness his willing ness his good heart. None of there own doctors recommendations were put into play .
In March we had state wide no child left behind 4th grade testing , this caused alot of anxiety in Kristopher , he became fixated on pass or fail even thought we explained that it wasn't that sort of test.He started vomiting , and loosing control of his bowles when the testing started. it would happen a few times a week either he would be sent home sick, or he would be up all night sick crying that he was afraid to go to school , or he would be fine for a while and then on a Sunday night get all upset and sick.
At the start of April he got sick at school and soiled himself at school , he was sent home and he began an awful downward slide , violent bowel accidents violent vomiting , and refusing to eat. we brought him to the doctor who said it was school based anxiety , she prescribed adult diapers told us to encourage food and if he didn't eat for 3 days she would prescribe Ensure.
Three days came and went we called the Dr on a Monday and told her he hadn't eaten , she refused to give him the Ensure , she told us to wait until our next appointment the following Monday , that would have made 10 days without eating, In total Kristopher went 8 solid days without eating food or a food supplement. The Dr's theory was if he got hungry enough he would eat. It was us that put a stop to this we put him on Ensure ourselves .
He went from 130 lbs to 114 in approx 2 weeks , We brought him in for a weight check and she insisted on questioning Kristopher multiple times about why he isn't eating each time he told her what he was telling us , then she wanted to speak to him alone she questioned him again , again he said the same thing , on the 4th volley of questions he said fine Ill eat , she reply , well hes willing to eat so I'm not comfortable prescribing the Ensure.
Kristopher doesn't have the ability to make these kind of statements with the understanding behind it , he told her what she wanted to hear so she would leave him alone.
Then she wanted to send us to a behavioralist , we went to the behavioralist he told us that we should homeschool Kristopher or he will have to make the best of it and go back to school, he said that schools don't have the funds for a tutor or aid , that is not supposed to be his consideration he consideration is supposed to be my son. I explained to him that if we homeschool Kristopher in this state he is not entitled to his special services like OT PT Speech etc thats when he said Kristopher will have to make the best of it. Kristopher laid on the behavioralist couch with his hat over his face he didn't speak much to him.When we left Kristopher said so mom he wants me to just live with it?
We came home and I had , had enough ...I found a new pediatrician ( first appointment date today) who has experience in children with developmental delays , I also managed to find the therapist ( first appointment date yesterday ) that Kristopher worked with when he was 4 during that not eating incident , it was a huge thing for me because she was from NH we didn't know she was in VT now or we would have gone straight to her.
Thursday that just past , the school contacted us by letter saying that the original pediatrician and the behaviorlist say now that Kristopher does not have anxiety and hes fine to return to school , Kristopher hasn't had more than 3 bites of solid food in almost 6 weeks , he is still in a diaper , and he still is terrified about going to school not one thing changed.
Friday the principal and the school nurse came to the door demanding to see Kristopher , now we live in an apartment building there is a security door , there is also no bell so if you want in you have to call us. The security door really made them mad they thought we put it there to stop them , they called from the front porch demanding to see Kristopher , Kristopher was asleep on the couch in the livingroom , which is right next to our front door . I was not going to let my child who is afraid of school to wake up with the principal standing over him. I told the principal that if she wanted to set a time on Monday when he was awake I would be glad to have her meet with Kristopher , she refused said she didn't need to make an appointment to do her job. Well if you want to get past the security door you do. While all of this is going on We are in a meeting with one of the disability agencies , and our daughter Erin is having an OT session , Later that day we were informed that the reason the principal was there was because she felt that Kristopher wasn't really ill and that he was truant. We pointed out that Kristopher was seen by professionals that day both professionals reported to the principal that Kristopher was indeed ill , and sleeping at the time.
Monday this week , they had a meeting about Kristopher at the school , in the meeting minutes they are now backing away from truancy , and are now talking about having child services take a look to see if its a "non classic form of abuse" that has lead to Kristopher's illness.
Tuesday ( this was a good day ) We went to see the therapist that worked with Kristopher when he was 4 , she sees anxiety about school she doesn't think he should just go back she thinks there needs to be changes made to his educational plan and then ease him back.
Wednesday we went to the new pediatrician , she prescribed the Ensure and the diapers along with a letter of medical necessity. She thinks maybe a new school placement for Kristopher is needed .
Now the therapist and the Dr are going to have a confab and talk about whats best for Kristopher , meanwhile the school wants to nail us for some warped form of abuse now that they actually believe that hes ill , the original pediatrician is under investigation from the medical practice board ( not our doing one of the agencies reported her ) because she let Kristopher suffer so much. and the behavioralist was a wasted trip not only that he is quoted by the school as saying he saw no anxiety and Kristopher should go back to school.
Kristopher is now 111 lbs , he still is not eating more than a few bites once a day , he is still in a diaper , hes now having nightmares about school and food .......and I just don't know what to do anymore.
Its long its complex and its personal but someone somewhere may know something that we can do .
I just don't understand how they can even think is "a non classic form of abuse" that made Kristopher ill what in the heck does that mean?
I have a list that Kristopher and I made about his anxiety he talked I wrote it is pervasive through out his entire school day , things I wasn't even aware of.
Ill stop now I'm so tired confused.............
