Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Honestly Sherry, you sure do have your hands full. I hope things level out. What on earth do they think a spectrum dx would do anyway? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Hi Sherry, I am sorry to hear about Joshs problems at school. I am sorry to hear that your exs wife is not helping your situation any. It sounds like you and the school are on opposite sides of things. I know in my own experience with school that they never seem to quite get what you tell them right. They always seem to screw up in some way or another. Schools never seem to listen to the whole conversation and comprehend what you tell them. This has been my current experience with s school at least. It is too bad for Josh that they have not been following the recommended suggestions to help Josh more. The schools never seem to understand sensory integration disorder very well and the details and child reactions that go with the disorder. Loud noises,people in their space (in their faces or too close to them) etc. When our kids go into sensory overload thats it they have had it right then and there. It is time to remove them from the sensory situation so that they can come back into control again. That is the only way my son can come back into control again. I have to completely remove hijm mfrom the situation. What is it with these people? Well it sounds like to me that they are either not listening or choosing to do their own thing or blatently ignoring your suggestions or could be none of the above. I sure hope Sherry that you ask to be included in the meeting with the doc when your ex and his wife meet with him. It is important that you get the inside info,not to mention get to hear what your ex and his wife are going to add for info and that everyone has Joshs best interest at heart. It sounds like you are very curious as to what possible information they can to tell this doc about Josh when it sounds like they do not spend much time with him. I think you deserve those answers for your sake and to better help Josh. I sure hope you can be a part of this meeting. You should be allowed to attend. As for the autism diagnosis you say Josh is not on the spectrum then he is not. I am sure you have written documents of some type reports etc stating or referring to the fact of Josh not being on the spectrum. It might take this written proof for your ex to believe it or he may not still who knows. The important thing is to make sure that the school and this doc and his counselor all ahve seent he written reports to this. After all the professionals are ones who call the shots here as far as making diagnosis is concerned if any is made. I wish you luck in your current issues with Josh. I hope your ex and his wife eventually come around to help Josh. I am thinking of you and Josh both Sherry. Jeanne NH From: sherry silvern <srsilvern@...> Subject: [ ] totally frustrated!!! Date: Tuesday, February 3, 2009, 12:20 PM Hello - I am so completely and utterly frustrated! Josh was having aggression problems at school in October, we (my ex and I) met with school folks to deal with it, school said they were going to do a functional behavior study on Josh (we shrugged out shoulders and said good luck - you've got a kid with sensory integration dysfunction and you're hoping to find a pattern? there are some things that will always set him off - someone too close, loud noise, etc. - but, really, it can be something new or different, or something that hasn't set him off before if he's having a bad day for some other reason that they don't consider - we all know what I'm talking about), and my ex suggested taking Josh to a counselor. Bear in mind, I've made so many suggestions to the school with strategies that I use at home that work pretty much all the time, but no, most of them don't get implemented at school. So, I started taking Josh to a counselor in November. Since then, he's made many suggestions (a lot that I had already made, many that are new) and I pass along all the suggestions in an email to the teacher, the school psychologist, and my ex - I write the emails the day of sessions so that I can remember all that we talked about during the sessions. Then, I try to follow up with notes in Josh's notebook that goes home/to school everyday. Well, today, the doc said he had a message from the school psychologist asking to speak with him to get ideas of what to put in a behavior plan for Josh. AAARRRGGGHHH! !! What does she think I've been doing all this time??? I feel like I'm talking to a brick wall! I don't think a single thing I've written about that has been discussed with the doc has been implemented at school!! I've tried to check up on things all along and I get the " oh, we haven't started that yet " line - since November!!!! What is with these people???!!! And, the ex and his wife wanted to meet with the doc - without Josh - and no one could figure out why. Bear in mind, there has been a neurologist, a psychiatrist, a psychologist, this counselor, teachers, and other therapists (speech, etc.), who all agree Josh does not have autism - he has never been placed on the spectrum. The ex has convinced himself, notwithstanding all these professional opinions, that Josh really does have autism - that's one of the things they wanted to talk to the doc about. He again told them Josh does not have autism. (the ex, when Josh was little, convinced himself Josh had CP because Josh, when excited, brings his hands up into " high guard, " which we were told was a developmental thing - every single doc we ever saw told the ex it was not CP but it took him almost 5 years to finally let that one go). And, the ex's wife told the doc she feels she has a " special connection " to Josh - keep in mind the ex cancels his afternoon visits (when he simply takes Josh train-hunting in his car and gives him dinner at my house) all the time, and he has Josh for, usually, one overnight visit every third weekend so he doesn't see Josh very much which means the wife sees Josh even less so what the heck kind of " special connection " can there be??? I asked the doc whether the wife explained what the " special connection " meant and he said she didn't and he didn't know what she meant either. And, even though she has this " special connection " with MY SON, she needed to ask the doc about other strategies she can use to help Josh. OK, I'm all for all of us being on the same page but for cripes sake, I send the same email to the ex as I do to school, listing all the strategies the doc suggests at everyone of these sessions! Again, what is wrong with these people!!!??? So, I'm totally frustrated with everything right now!!!! I know I just need to go take a walk, take a deep breath (OK, a lot of deep breaths!), and have a cup of chamomile tea, so I thank everyone for letting me rant for these few minutes! Sherry (and Josh) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 > > Hello - > > I am so completely and utterly frustrated! Josh was having aggression problems at school in October, we (my ex and I) met with school folks to deal with it, school said they were going to do a functional behavior study on Josh (we shrugged out shoulders and said good luck - you've got a kid with sensory integration dysfunction and you're hoping to find a pattern? there are some things that will always set him off - someone too close, loud noise, etc. - but, really, it can be something new or different, or something that hasn't set him off before if he's having a bad day for some other reason that they don't consider - we all know what I'm talking about), and my ex suggested taking Josh to a counselor. Bear in mind, I've made so many suggestions to the school with strategies that I use at home that work pretty much all the time, but no, most of them don't get implemented at school. So, I started taking Josh to a counselor in November. Since > then, he's made many suggestions (a lot that I had already made, many that are new) and I pass along all the suggestions in an email to the teacher, the school psychologist, and my ex - I write the emails the day of sessions so that I can remember all that we talked about during the sessions. Then, I try to follow up with notes in Josh's notebook that goes home/to school everyday. Well, today, the doc said he had a message from the school psychologist asking to speak with him to get ideas of what to put in a behavior plan for Josh. AAARRRGGGHHH!!! What does she think I've been doing all this time??? I feel like I'm talking to a brick wall! I don't think a single thing I've written about that has been discussed with the doc has been implemented at school!! I've tried to check up on things all along and I get the " oh, we haven't started that yet " line - since November!!!! What is with these people???!!! > > And, the ex and his wife wanted to meet with the doc - without Josh - and no one could figure out why. Bear in mind, there has been a neurologist, a psychiatrist, a psychologist, this counselor, teachers, and other therapists (speech, etc.), who all agree Josh does not have autism - he has never been placed on the spectrum. The ex has convinced himself, notwithstanding all these professional opinions, that Josh really does have autism - that's one of the things they wanted to talk to the doc about. He again told them Josh does not have autism. (the ex, when Josh was little, convinced himself Josh had CP because Josh, when excited, brings his hands up into " high guard, " which we were told was a developmental thing - every single doc we ever saw told the ex it was not CP but it took him almost 5 years to finally let that one go). And, the ex's wife told the doc she feels she has a " special connection " to Josh - keep in mind the ex cancels his > afternoon visits (when he simply takes Josh train-hunting in his car and gives him dinner at my house) all the time, and he has Josh for, usually, one overnight visit every third weekend so he doesn't see Josh very much which means the wife sees Josh even less so what the heck kind of " special connection " can there be??? I asked the doc whether the wife explained what the " special connection " meant and he said she didn't and he didn't know what she meant either. And, even though she has this " special connection " with MY SON, she needed to ask the doc about other strategies she can use to help Josh. OK, I'm all for all of us being on the same page but for cripes sake, I send the same email to the ex as I do to school, listing all the strategies the doc suggests at everyone of these sessions! Again, what is wrong with these people!!!??? > > So, I'm totally frustrated with everything right now!!!! I know I just need to go take a walk, take a deep breath (OK, a lot of deep breaths!), and have a cup of chamomile tea, so I thank everyone for letting me rant for these few minutes! > > Sherry (and Josh) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi Sherry I'm so sorry you're going thru all this. I havent been a member of the board too long so my thoughts might be things you've already BTDT. I swear raising a SN child is a full-time job in and of itself, with all the f/up that needs to go on. One thing that has helped me is to be a big enough pain that they don't blow me off (if that makes sense) AND we've had pretty good luck. I generally write the IEP and meet with the team before the official meeting so they have some idea of what I expect. CAUSE after all, we... the parents are the most important part of the team. If you feel they arent following thru with things that will help your son function more comfortably (he and the others) in the classroom, then maybe it's time to call the whole IEP team together and figure out why? You mentioned " sensory issues " - what does the school OT say about this? Is he getting enough sensory breaks? Does he need more input (if he doesnt wear a vest, is that something that should be tried?) Does ha have enough resource time? Sorry not sure how old Josh is.. But sometimes a little extra support away from the larger group (if resource is good with him) might be an option? Let them to do their behavioral plan but you may want to consider calling the team together afterwards and getting everyone on the same page cause it sounds like the right hand doesnt know what the left is doing (if I'm interpreting correctly? And apologize if I've made incorrect assumptions here). And re: a Spectrum dx... while dx's are sometimes really important - where the school is concerned (of course in the perfect world ) the IEP should be written based on the child's needs, not a dx. Josh may have some overlapping issues with a Spectrum dx but that doesnt matter to the IEP.. Ultimately his needs need to be defined, and services provided to address the needs. Often, I realize, easier said than done cause one person's objective opinion often differs from another AND the right dx and trends for services can be helpful... I wish you the very best. Leigh > > > > Hello - > > > > I am so completely and utterly frustrated!� Josh was having > aggression problems at school in October, we (my ex and I) met with > school folks to deal with it, school said they were going to do a > functional behavior study on Josh (we shrugged out shoulders and said > good luck - you've got a kid with sensory integration dysfunction and > you're hoping to find a pattern?� there are some things that will > always set him off - someone too close, loud noise, etc. - but, > really, it can be something new or different, or something that > hasn't set him off before if he's having a bad day for some other > reason that they don't consider - we all know what I'm talking > about), and my ex suggested taking Josh to a counselor.� Bear in > mind, I've made so many suggestions to the school with strategies > that I use at home that work pretty much all the time, but no, most > of them don't get implemented at school.� So, I started taking Josh > to a counselor in November.� Since > > then, he's made many suggestions (a lot that I had already made, > many that are new) and I pass along all the suggestions in an email > to the teacher, the school psychologist, and my ex - I write the > emails the day of sessions so that I can remember all that we talked > about during the sessions.� Then, I try to follow up with notes in > Josh's notebook that goes home/to school everyday.� Well, today, the > doc said he had a message from the school psychologist asking to > speak with him to get ideas of what to put in a behavior plan for > Josh.� AAARRRGGGHHH!!! What does she think I've been doing all this > time???� I feel like I'm talking to a brick wall!� I don't think a > single thing I've written about that has been discussed with the doc > has been implemented at school!!� I've tried to check up on things > all along and I get the " oh, we haven't started that yet " line - > since November!!!!� What is with these people???!!! > > > > And, the ex and his wife wanted to meet with the doc - without > Josh - and no one could figure out why.� Bear in mind, there has been > a neurologist, a psychiatrist, a psychologist, this counselor, > teachers, and other therapists (speech, etc.), who all agree Josh > does not have autism - he has never been placed on the spectrum.� The > ex has convinced himself, notwithstanding all these professional > opinions, that Josh really does have autism - that's one of the > things they wanted to talk to the doc about.� He again told them Josh > does not have autism.� (the ex, when Josh was little, convinced > himself Josh had CP because Josh, when excited, brings his hands up > into " high guard, " which we were told was a developmental thing - > every single doc we ever saw told the ex it was not CP but it took > him almost 5 years to finally let that one go).� And, the ex's wife > told the doc she feels she has a " special connection " to Josh - keep > in mind the ex cancels his > > afternoon�visits (when he simply takes Josh train-hunting in his > car and�gives him dinner at my house)�all the time, and he has Josh > for, usually, one overnight visit every third weekend so he doesn't > see Josh very much which means the wife sees Josh even less so what > the heck kind of " special connection " can there be???� I asked the > doc whether�the wife�explained what the " special connection " meant > and he said she didn't and he didn't know what she meant either.� > And, even though she has this " special connection " with MY SON, she > needed to ask the doc about other strategies she can use to help > Josh.� OK, I'm all for all of us being on the same page but for > cripes sake, I send the same email to the ex as I do to school, > listing all the strategies the doc suggests at everyone of these > sessions!� Again, what is wrong with these people!!!??? > > > > So, I'm totally frustrated with everything right now!!!! I know I > just need to go take a walk, take a deep breath (OK, a lot of deep > breaths!), and have a cup of chamomile tea, so I thank everyone for > letting me rant for these few minutes! > > > > Sherry (and Josh) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Thanks, ! Good for you to go to your state capitol! I admire that, and even if the moms weren't introduced I would hope the legislators saw that there were a bunch of women (and I would hope men) in the audience and maybe presumed they were moms (and dads). Your statement has got me all fired up as to what can be done to better the system. I'm on the PTA and am one of the vice presidents of our school's group, I had been on a couple of Dist.-wide committees (one for NCLB and the other was a citizen's advisory group), but this year I let those latter two committees go - I'm just exhausted! But, I think it's time for a letter and a personal appearance at my State Rep's and State Senator's offices. I'm in IL, we now have a new governor (after the Blagovich fiasco!), and this guv has said he is embarassed how poorly IL fares when compared with other states in delivery of any number of different services. IL ranks 51 out of 50 states for delivery of services to persons with developmental delays. - that's just appalling! No, it's MORE than appalling and it is time for change - if Obama puts his money where his mouth was (and where 's mouth appears to be these days), perhaps there will be more federal funding for special ed services, but let's get the States going as well! As for the diagnosis of autism, I don't mean to sound testy here but you're right, if Josh had a diagnosis of autism, there would be more money and services available to him. Sorry, I don't think a child should be " diagnosed " with something he doesn't have just to get services that he needs nonetheless. I was denied respite care by an agency (OK, more than one) because Josh doesn't have a " recognized " condition - like verbal/oral apraxia, global dyspraxia, hypotonia, sensory integration dysfunction, and cognitive delays are not " recognized " conditions! What my caseworker said was that if Josh was labeled with autism or MR or some other " initial " condition, I'd get respite care in a hearbeat. Now that really sucks! (pardon my language) Aren't I as exhausted as some of the other mothers with kids with " initial " conditions? Don't Josh's issues mean anything to anyone except me? Sorry, I back on my frustration rant - I'll stop now before I get too carried away! But you go, girl! Take that fight to the state capitol and the steps of the nation's capitol - and maybe I'll see you there! Sherry and Josh ________________________________ From: sreed57 <sreedp@...> Sent: Wednesday, February 4, 2009 10:00:07 AM Subject: [ ] Re: totally frustrated!!! > > Hello - > > I am so completely and utterly frustrated! Josh was having aggression problems at school in October, we (my ex and I) met with school folks to deal with it, school said they were going to do a functional behavior study on Josh (we shrugged out shoulders and said good luck - you've got a kid with sensory integration dysfunction and you're hoping to find a pattern? there are some things that will always set him off - someone too close, loud noise, etc. - but, really, it can be something new or different, or something that hasn't set him off before if he's having a bad day for some other reason that they don't consider - we all know what I'm talking about), and my ex suggested taking Josh to a counselor. Bear in mind, I've made so many suggestions to the school with strategies that I use at home that work pretty much all the time, but no, most of them don't get implemented at school. So, I started taking Josh to a counselor in November. Since > then, he's made many suggestions (a lot that I had already made, many that are new) and I pass along all the suggestions in an email to the teacher, the school psychologist, and my ex - I write the emails the day of sessions so that I can remember all that we talked about during the sessions. Then, I try to follow up with notes in Josh's notebook that goes home/to school everyday. Well, today, the doc said he had a message from the school psychologist asking to speak with him to get ideas of what to put in a behavior plan for Josh. AAARRRGGGHHH! !! What does she think I've been doing all this time??? I feel like I'm talking to a brick wall! I don't think a single thing I've written about that has been discussed with the doc has been implemented at school!! I've tried to check up on things all along and I get the " oh, we haven't started that yet " line - since November!!!! What is with these people???!!! > > And, the ex and his wife wanted to meet with the doc - without Josh - and no one could figure out why. Bear in mind, there has been a neurologist, a psychiatrist, a psychologist, this counselor, teachers, and other therapists (speech, etc.), who all agree Josh does not have autism - he has never been placed on the spectrum. The ex has convinced himself, notwithstanding all these professional opinions, that Josh really does have autism - that's one of the things they wanted to talk to the doc about. He again told them Josh does not have autism. (the ex, when Josh was little, convinced himself Josh had CP because Josh, when excited, brings his hands up into " high guard, " which we were told was a developmental thing - every single doc we ever saw told the ex it was not CP but it took him almost 5 years to finally let that one go). And, the ex's wife told the doc she feels she has a " special connection " to Josh - keep in mind the ex cancels his > afternoon visits (when he simply takes Josh train-hunting in his car and gives him dinner at my house) all the time, and he has Josh for, usually, one overnight visit every third weekend so he doesn't see Josh very much which means the wife sees Josh even less so what the heck kind of " special connection " can there be??? I asked the doc whether the wife explained what the " special connection " meant and he said she didn't and he didn't know what she meant either. And, even though she has this " special connection " with MY SON, she needed to ask the doc about other strategies she can use to help Josh. OK, I'm all for all of us being on the same page but for cripes sake, I send the same email to the ex as I do to school, listing all the strategies the doc suggests at everyone of these sessions! Again, what is wrong with these people!!!??? > > So, I'm totally frustrated with everything right now!!!! I know I just need to go take a walk, take a deep breath (OK, a lot of deep breaths!), and have a cup of chamomile tea, so I thank everyone for letting me rant for these few minutes! > > Sherry (and Josh) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi Jeanne - The doc said the ex and his wife have no indication they wanted to see him again - either with or without Josh, or with or without me. This is typical of the ex - he makes one appearance and will give the impression he is " involved, " and then never sets foot again. As I wrote to someone else just now, Josh's teacher last year got so angry with the ex- we had a conference and, the way she described it later, the ex " swooped in " as if he was the " great fixer " and was ready to " save the day. " She said she was ready to ring his neck considering how he always canceled (and still does) visits with Josh, never participates in school events, never participates in Special Olympics (she was one of the coaches for one sport Josh was in), never had any contact with her, etc. It had been pointed out to me even before then that Dist. people understood the full situation with the ex and looked at him as sort of a joke, never took him seriously. It's pathetic, for Josh's sake, but at least they weren't falling for his manipulations. The ex also has stopped all communication with me over the last two weeks since their appt with the doc - I think because he hasn't paid his child support, and his passive/aggressive disorder has kicked in again! (lol!) He never tells me anything meaningful about the times he spends with Josh ( " oh, we went train hunting " or stuff like that) - I sometimes get more of the scoop from my ex-SIL! And you're absolutely right that our kids with sensory issues - loud noises, startling events, etc., will set them off pretty much all the time. So either the kiddo needs to be prepared for it well in advance (and then you run the risk of crossing that line of " over preparing " which can lead to anxiety!), or just get the kiddo out of the situation as quickly as needed. Nope, there is one aide in particular who just doesn't get it! There was an incident that was described to me where Josh was really startled by something on the bus and reached out and grabbed a little girl's hair. Obviously, not a socially appropriate response, I'm not saying it was. But this aide, I was told, literally dragged Josh off the bus and was yelling at him right in his face. Now tell me, is that an appropriate response!?! And then, I got conflicting stories from the principal, the aide, and the teacher (who wasn't there and didn't try to say she saw the whole thing but related what she had been told), and they all were different from the bus driver (who told me all about the incident) who was so upset at the aide's behavior that she told me she was in tears by the time she got the bus back to the garage. Even the aide on the bus said he was furious at how the classroom aide handled Josh. The driver, by the way, was transferred to a different school - gosh, is it any wonder why? So clearly they don't listen, they ignore, there's no consistency in how to deal with situations (we had a meeting after the bus incident and many suggestions were made - that's when the functional behavior analysis was started, and that's when the ex suggested we do our " part " in taking Josh to a counselor - which really should have read " I do my part " in taking Josh to the counselor since the ex certainly doesn't participate in sessions with Josh). We have a conference tomorrow - 75 minutes. The school psych wrote me and said there were about four things on the agenda, including the suggestions from Josh's counselor and the " top 5 " the doc suggested implementing immediately. We'll see, I've got other ideas for the agenda as well and wrote her about some. We'll see what we can accomplish. Thanks, Jeanne, for all the support! I hope all is well with your ds and things are going smoothly. Sherry and Josh ________________________________ From: Jeanne <jamie199866@...> Sent: Tuesday, February 3, 2009 7:15:35 PM Subject: Re: [ ] totally frustrated!!! Hi Sherry, I am sorry to hear about Joshs problems at school. I am sorry to hear that your exs wife is not helping your situation any. It sounds like you and the school are on opposite sides of things. I know in my own experience with school that they never seem to quite get what you tell them right. They always seem to screw up in some way or another. Schools never seem to listen to the whole conversation and comprehend what you tell them. This has been my current experience with s school at least. It is too bad for Josh that they have not been following the recommended suggestions to help Josh more. The schools never seem to understand sensory integration disorder very well and the details and child reactions that go with the disorder. Loud noises,people in their space (in their faces or too close to them) etc. When our kids go into sensory overload thats it they have had it right then and there. It is time to remove them from the sensory situation so that they can come back into control again. That is the only way my son can come back into control again. I have to completely remove hijm mfrom the situation. What is it with these people? Well it sounds like to me that they are either not listening or choosing to do their own thing or blatently ignoring your suggestions or could be none of the above. I sure hope Sherry that you ask to be included in the meeting with the doc when your ex and his wife meet with him. It is important that you get the inside info,not to mention get to hear what your ex and his wife are going to add for info and that everyone has Joshs best interest at heart. It sounds like you are very curious as to what possible information they can to tell this doc about Josh when it sounds like they do not spend much time with him. I think you deserve those answers for your sake and to better help Josh. I sure hope you can be a part of this meeting. You should be allowed to attend. As for the autism diagnosis you say Josh is not on the spectrum then he is not. I am sure you have written documents of some type reports etc stating or referring to the fact of Josh not being on the spectrum. It might take this written proof for your ex to believe it or he may not still who knows. The important thing is to make sure that the school and this doc and his counselor all ahve seent he written reports to this. After all the professionals are ones who call the shots here as far as making diagnosis is concerned if any is made. I wish you luck in your current issues with Josh. I hope your ex and his wife eventually come around to help Josh. I am thinking of you and Josh both Sherry. Jeanne NH From: sherry silvern <srsilvern (DOT) com> Subject: [childrensapraxiane t] totally frustrated!! ! @groups. com Date: Tuesday, February 3, 2009, 12:20 PM Hello - I am so completely and utterly frustrated! Josh was having aggression problems at school in October, we (my ex and I) met with school folks to deal with it, school said they were going to do a functional behavior study on Josh (we shrugged out shoulders and said good luck - you've got a kid with sensory integration dysfunction and you're hoping to find a pattern? there are some things that will always set him off - someone too close, loud noise, etc. - but, really, it can be something new or different, or something that hasn't set him off before if he's having a bad day for some other reason that they don't consider - we all know what I'm talking about), and my ex suggested taking Josh to a counselor. Bear in mind, I've made so many suggestions to the school with strategies that I use at home that work pretty much all the time, but no, most of them don't get implemented at school. So, I started taking Josh to a counselor in November. Since then, he's made many suggestions (a lot that I had already made, many that are new) and I pass along all the suggestions in an email to the teacher, the school psychologist, and my ex - I write the emails the day of sessions so that I can remember all that we talked about during the sessions. Then, I try to follow up with notes in Josh's notebook that goes home/to school everyday. Well, today, the doc said he had a message from the school psychologist asking to speak with him to get ideas of what to put in a behavior plan for Josh. AAARRRGGGHHH! !! What does she think I've been doing all this time??? I feel like I'm talking to a brick wall! I don't think a single thing I've written about that has been discussed with the doc has been implemented at school!! I've tried to check up on things all along and I get the " oh, we haven't started that yet " line - since November!!!! What is with these people???!!! And, the ex and his wife wanted to meet with the doc - without Josh - and no one could figure out why. Bear in mind, there has been a neurologist, a psychiatrist, a psychologist, this counselor, teachers, and other therapists (speech, etc.), who all agree Josh does not have autism - he has never been placed on the spectrum. The ex has convinced himself, notwithstanding all these professional opinions, that Josh really does have autism - that's one of the things they wanted to talk to the doc about. He again told them Josh does not have autism. (the ex, when Josh was little, convinced himself Josh had CP because Josh, when excited, brings his hands up into " high guard, " which we were told was a developmental thing - every single doc we ever saw told the ex it was not CP but it took him almost 5 years to finally let that one go). And, the ex's wife told the doc she feels she has a " special connection " to Josh - keep in mind the ex cancels his afternoon visits (when he simply takes Josh train-hunting in his car and gives him dinner at my house) all the time, and he has Josh for, usually, one overnight visit every third weekend so he doesn't see Josh very much which means the wife sees Josh even less so what the heck kind of " special connection " can there be??? I asked the doc whether the wife explained what the " special connection " meant and he said she didn't and he didn't know what she meant either. And, even though she has this " special connection " with MY SON, she needed to ask the doc about other strategies she can use to help Josh. OK, I'm all for all of us being on the same page but for cripes sake, I send the same email to the ex as I do to school, listing all the strategies the doc suggests at everyone of these sessions! Again, what is wrong with these people!!!??? So, I'm totally frustrated with everything right now!!!! I know I just need to go take a walk, take a deep breath (OK, a lot of deep breaths!), and have a cup of chamomile tea, so I thank everyone for letting me rant for these few minutes! Sherry (and Josh) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi Sherry, Your welcome you sure can use all the support you can get with your frustarating situation with Josh and the ex etc. I feel bad for Josh though. he could sure use his dads support and love right now. You sure have had your share of problems with the school. Sorry to hear they are so ignorant. We had a huge bus issue also once. Plus s current aide really is an inapproplriate match for him. So I hear yeah on the aide thing. Icurrently got that huge issue myself. She yells in s face a lot I think. sure has the melt down reaction down to a T after school on those days. i wish you all the luck and prayers are with you for your meeting tommorrow. I hope they listen to your side of things and actively take your sugestions and start utilizing them. As far as your ex is concerned. Just try to remembert that Josh has the best mom and supportive parent he could ever want. Do not worry Josh knows who he can count on when the going gets tough his mom. One day in future when Josh is an adult man he will remember that when he needed his mom Sherry you were there 100 percent 24/7 and 100 percent committed to helping him. One day Josh will thank you. You are doing wonderful with Josh. Things are ok with . They could be much better but they are tolerable at this point. He is doing incredibly well with his speech. He is starting to talk more clearly and starting to ask tons of questions and loves to talk to me. This is what keeps my head up at this point. Hearing talk to me and seeing how excited he is that I understand him and that he can now voice somewhat his thoughts and emotions.Thanks for asking. Take care of yourselves Sherry and Josh. I will be thinking of you. Jeanne NH From: sherry silvern <srsilvern (DOT) com> Subject: [childrensapraxiane t] totally frustrated!! ! @groups. com Date: Tuesday, February 3, 2009, 12:20 PM Hello - I am so completely and utterly frustrated! Josh was having aggression problems at school in October, we (my ex and I) met with school folks to deal with it, school said they were going to do a functional behavior study on Josh (we shrugged out shoulders and said good luck - you've got a kid with sensory integration dysfunction and you're hoping to find a pattern? there are some things that will always set him off - someone too close, loud noise, etc. - but, really, it can be something new or different, or something that hasn't set him off before if he's having a bad day for some other reason that they don't consider - we all know what I'm talking about), and my ex suggested taking Josh to a counselor. Bear in mind, I've made so many suggestions to the school with strategies that I use at home that work pretty much all the time, but no, most of them don't get implemented at school. So, I started taking Josh to a counselor in November. Since then, he's made many suggestions (a lot that I had already made, many that are new) and I pass along all the suggestions in an email to the teacher, the school psychologist, and my ex - I write the emails the day of sessions so that I can remember all that we talked about during the sessions. Then, I try to follow up with notes in Josh's notebook that goes home/to school everyday. Well, today, the doc said he had a message from the school psychologist asking to speak with him to get ideas of what to put in a behavior plan for Josh. AAARRRGGGHHH! !! What does she think I've been doing all this time??? I feel like I'm talking to a brick wall! I don't think a single thing I've written about that has been discussed with the doc has been implemented at school!! I've tried to check up on things all along and I get the " oh, we haven't started that yet " line - since November!!!! What is with these people???!!! And, the ex and his wife wanted to meet with the doc - without Josh - and no one could figure out why. Bear in mind, there has been a neurologist, a psychiatrist, a psychologist, this counselor, teachers, and other therapists (speech, etc.), who all agree Josh does not have autism - he has never been placed on the spectrum. The ex has convinced himself, notwithstanding all these professional opinions, that Josh really does have autism - that's one of the things they wanted to talk to the doc about. He again told them Josh does not have autism. (the ex, when Josh was little, convinced himself Josh had CP because Josh, when excited, brings his hands up into " high guard, " which we were told was a developmental thing - every single doc we ever saw told the ex it was not CP but it took him almost 5 years to finally let that one go). And, the ex's wife told the doc she feels she has a " special connection " to Josh - keep in mind the ex cancels his afternoon visits (when he simply takes Josh train-hunting in his car and gives him dinner at my house) all the time, and he has Josh for, usually, one overnight visit every third weekend so he doesn't see Josh very much which means the wife sees Josh even less so what the heck kind of " special connection " can there be??? I asked the doc whether the wife explained what the " special connection " meant and he said she didn't and he didn't know what she meant either. And, even though she has this " special connection " with MY SON, she needed to ask the doc about other strategies she can use to help Josh. OK, I'm all for all of us being on the same page but for cripes sake, I send the same email to the ex as I do to school, listing all the strategies the doc suggests at everyone of these sessions! Again, what is wrong with these people!!!??? So, I'm totally frustrated with everything right now!!!! I know I just need to go take a walk, take a deep breath (OK, a lot of deep breaths!), and have a cup of chamomile tea, so I thank everyone for letting me rant for these few minutes! Sherry (and Josh) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Hi, Sherry! Aren't you sweet for recognizing my little tiny efforts at turning the wild herd of elephants around? Really, the whole special education experience is horrfying and there has got to be a better, more efficient and more effective way of doing business. I hear your exhaustion and ask that you be really careful. My children's father is also the seagull parent, swoop in make a mess and leave. I made myself very sick 6 years ago by trying to fix my son's situation and struggle every day to work around it. Rest, rest, rest! I read in an autism magazine about not trying to fix everything at once. Take it all one day at a time; it's hard not to think " if I don't adress this today, he'll never become self-sufficient. " But that doesn't work in the long run for the moms. It is so hard having kids with no diagnosis but with functional deficits. The system is so big, that those labels are everything, they don't have time to carefully identify problems and respond in real time. I think this is a Department of Health and Human Services problem as much as a Department of Education issue. This nation seems to distribute its social services to juviniles through the schools - while not providing experts or adequate funds to do so -as opposed to having socialized medicine. So the whole thing is awkward and ineffective. My visit to the capitol was an eye opener, with a few legislators seeming to " get it " while others having no sense of the reality on the ground at all. So I hope that inbetween our daily naps (!!) we can find the time to inform our legislators about what it's like to try to make sure our kids don't fall through the cracks. I'm currently working on trying to get rid of a " modified diploma " which our department of education has interpreted in the most punitive manner saying that any class that is modified does not count toward the regular diploma. I am told that students who receive a modified diploma do not qualify for federal financial aid for college. I think most kids with IEPs have modified classes - so this is ludicrous and discriminatory for heaven's sake. My kids are very bright, they just have processing issues, they dserve to go to college. I wish I had gotten my law degree! Hang in there, but slowly - All the best - > > > > Hello - > > > > I am so completely and utterly frustrated! Josh was having > aggression problems at school in October, we (my ex and I) met with > school folks to deal with it, school said they were going to do a > functional behavior study on Josh (we shrugged out shoulders and said > good luck - you've got a kid with sensory integration dysfunction and > you're hoping to find a pattern? there are some things that will > always set him off - someone too close, loud noise, etc. - but, > really, it can be something new or different, or something that > hasn't set him off before if he's having a bad day for some other > reason that they don't consider - we all know what I'm talking > about), and my ex suggested taking Josh to a counselor. Bear in > mind, I've made so many suggestions to the school with strategies > that I use at home that work pretty much all the time, but no, most > of them don't get implemented at school. So, I started taking Josh > to a counselor in November. Since > > then, he's made many suggestions (a lot that I had already made, > many that are new) and I pass along all the suggestions in an email > to the teacher, the school psychologist, and my ex - I write the > emails the day of sessions so that I can remember all that we talked > about during the sessions. Then, I try to follow up with notes in > Josh's notebook that goes home/to school everyday. Well, today, the > doc said he had a message from the school psychologist asking to > speak with him to get ideas of what to put in a behavior plan for > Josh. AAARRRGGGHHH! !! What does she think I've been doing all this > time??? I feel like I'm talking to a brick wall! I don't think a > single thing I've written about that has been discussed with the doc > has been implemented at school!! I've tried to check up on things > all along and I get the " oh, we haven't started that yet " line - > since November!!!! What is with these people???!!! > > > > And, the ex and his wife wanted to meet with the doc - without > Josh - and no one could figure out why. Bear in mind, there has been > a neurologist, a psychiatrist, a psychologist, this counselor, > teachers, and other therapists (speech, etc.), who all agree Josh > does not have autism - he has never been placed on the spectrum. The > ex has convinced himself, notwithstanding all these professional > opinions, that Josh really does have autism - that's one of the > things they wanted to talk to the doc about. He again told them Josh > does not have autism. (the ex, when Josh was little, convinced > himself Josh had CP because Josh, when excited, brings his hands up > into " high guard, " which we were told was a developmental thing - > every single doc we ever saw told the ex it was not CP but it took > him almost 5 years to finally let that one go). And, the ex's wife > told the doc she feels she has a " special connection " to Josh - keep > in mind the ex cancels his > > afternoon visits (when he simply takes Josh train-hunting in his > car and gives him dinner at my house) all the time, and he has Josh > for, usually, one overnight visit every third weekend so he doesn't > see Josh very much which means the wife sees Josh even less so what > the heck kind of " special connection " can there be??? I asked the > doc whether the wife explained what the " special connection " meant > and he said she didn't and he didn't know what she meant either. > And, even though she has this " special connection " with MY SON, she > needed to ask the doc about other strategies she can use to help > Josh. OK, I'm all for all of us being on the same page but for > cripes sake, I send the same email to the ex as I do to school, > listing all the strategies the doc suggests at everyone of these > sessions! Again, what is wrong with these people!!!??? > > > > So, I'm totally frustrated with everything right now!!!! I know I > just need to go take a walk, take a deep breath (OK, a lot of deep > breaths!), and have a cup of chamomile tea, so I thank everyone for > letting me rant for these few minutes! > > > > Sherry (and Josh) > > > > Quote Link to comment Share on other sites More sharing options...
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