Tiapet
Old Hand
I sat on this overnight to think if I really wanted to post or not but I'm still aggravated and wanted a little feedback.
Yesterday we went to the developmental pediatric psychiatric doctor. Initially, based on last appointment, we were suppose to have ms queen just do some more simple test (whatever that meant and whatever there was left to even do at this point-academic stuff). So we get there and the doctor tells us to come in to talk to us, no queen, instead. Ooookay. Hmmm So she begins a discussion right off with how difficult child is on tenex and I said noooooooo. You remember the insurance wouldn't cover it? We went back and forth about that a few minutes with her saying yes but didn't we get that figured out and get them to cover it? ( at that moment I hadn't recalled that we did)
I was a bit peeved then because I felt it was irresponsible as a doctor to not have notes on what she does with the child's medications each and every time we change or do anything with medications. So I go a bit set off. She said well how about if I call the pharmacy and see if they will cover it because I want to try this again? Huh?
Then finally I remembered that we discontinued it because difficult child developed a tick from it so I told her that. I said it's in your notes, it should be there to look and see. It seemed she was relying on me to recall. So she did go through her notes and the only thing she found was regarding insurance not taking it.
By then I was really starting to get even more aggravated because at that moment I was still back at the insurance issue and her notes and her statements to me (really wish I could recall full detail of conversation now) because I felt as though "how stupid of me not to remember right" is how she was making me feel. Well I'm a parent of 3 difficult children, one that is graduating at the moment and in the middle of college stuff, a rental that is in foreclosure and faced with having to move by end of June, a SO who's been out of work since a year ago May 30th and no luck with work and not knowing where we'll move to at the moment "incase he gets a job-which could even be out of state let alone across the state", and medication that clouds my head/memory at times that details can get jumbled on the spot or overall. Isn't SHE the one who is suppose to have notes, legally, on what she does with medications? And "I'm" the one feeling like I did something bad?
So we move on to other things. We discuss how there isn't a label currently for ms queen and I brought up the fact that her CA teacher (the one in charge of her resource room) suggested that if she had a label of Autism that there was some social skills classes or supports that they could offer but only "if". So I asked this doctor, since at our last visit we discussed difficult child having "some" of the characteristics of autism spectrum but that she didn't feel she exactly had it, how we could access getting this from the school. She went on about how she didn't feel comfortable giving difficult child that label to get these services AND how...get this....since difficult child doesn't display any social issues (like they can't get along with anyone or don't like to be around people) and any Autism Spectrum children "always" display this, particularly before age 3 (difficult child does in the fact that she can't get along with peers appropriately-i.e. immaturity, has to be first, interrupts, etc..but didn't display it before age 3). Now someone please correct me if I am wrong but I believe that to be not true? No how could I get her to understand nor accept this what so ever. Remember, this is a TOP Medical Facility here in NC (so again, if I'm wrong PLEASE correct me!) She treated me as if I didn't know anything, which she should know better after talking to other staff that have dealt with me and the difficult children there. She even said Aspergers was the same rule of thumb?
Then she brought up the fact that she had talked to difficult children past therapist and how she had agreed that difficult child would have benefited if she went to this residential day school (which would have been 5 days a week and home weekends). Therapist knew that it couldn't happen due to exdh and legal issues involved. So she wanted to know how I felt on something like that. I had already discussed this with this doctor before as well and told her the same thing therapist did regarding the legal reasons. Why was she revisiting it? I told her I did, after our last conversation, go to him and ask about it and as I had previously told her, it WOULD be a legal issue should I try to do it. Again, no notes on this in her files (As I'm sitting there I actually was seeing no notes apparently in file just the normal stuff basically of prescriptions written, reports of tests, etc...).
We started talking about diagnosis then. And she referred to labels and such and I don't recall exactly what was said but it came across as though, via her statements, that she felt as though I wanted a label put on difficult child. I told her I do not want a label, that's not what I am looking for at all. I want to know how we can help her or access services to help her. That's all. So then she asked if they were following the recommendations made by the pscyhologist who did the overall testing there and I said for the most part yes they are but there are other services she needs and I can't get. Like more help in math. This child is basically getting by on D's in resource classes and yet they keep passing her along from grade to grade and think it's ok because it's not an F. How is this helping her to learn? She said she needs tutoring. I said I agree but the school said that difficult child is getting all the services they have as it is and they have nothing more to offer her. I also let her know that SO and oldest difficult child extremely capable of tutoring math since they are almost genius in that dept but that difficult child just can't seem to "grasp" how to learn it and "that" is the problem. Not so much the tutoring.Well then perhaps we need the help of the law depart of the facility (of where we are at) she says. Huh? I'm thinking again, how is that going to help difficult child get figured out how to learn? I said, well based on what I know about special education the school has to provide what the child needs as long as it can be demonstrated she needs it and MY concern, and the whole point here is to figure out how we can demonstrate that difficult child NEEDS these services since on her testing it's not apparent by scores but yet she can't do the work. For example, a word problem- she can't seem to grasp what functions to use to solve it. In simple math she has just NOW been able to get to solving but don't set up a number problem that involves too many numbers like 345,897 + 34589= or 8765x3454= because she won't be able to do it well. For the multiplication she will sometimes add the problems or multiply it backwards almost like having dyslexia but she doesn't have that (she's been tested). And algebra...omg...no way could she understand equations and that will become a mandatory class. Money? She still doesn't understand money denominations properly or how to maneuver equations on that! This is passing a 6th grader???? So when I told this doctor what I knew about special education and what school has to provide she says "do you have a degree in special education?" I said no, but I've been doing this for so many years, I've been an advocate, I've worked with NAMI and other families and I've gone into schools for IEP's. She says again, "do you have a degree in special education?" Of course I answered again. NO! I said I don't need one to know what is the law!
So we move forward again (and as you can tell, I was getting angrier and more frustrated with her). I told her how her resource room teacher at the second to last IEP conference (actually I think it was just a conference) has asked me if difficult child had schizophrenia or DID or had been checked for that because we had been discussing how she can be jekyll and hyde in moods. I waivered back and forth trying to recall which the teacher had actually said at the time because it was quite a while since that had been and as I said, a lot is going on and my head is jumbled on the spot (later in care I recalled it was mulitiple personalities of course!). At the moment I said that the doctor looked at me strangely, like I had too heads or something was wrong with me. I got the feeling like.....oh I don't know exactly like I said something wrong (not to mention she said "what is DID?"- ummm this is an accomplished doctor who doesn't know what DID is?). I felt like I was suddenly under a microscope! Then I just about lost it completely with her. I got totally frustated and with what ever she said next and I wasn't nice about it as I snapped at her. She said "I didn't mean to make you angry". I said to her "I don't like being made to feel like I'm losing my mind or don't know what I'm talking about."
Ok so I can tell you all the underlying thing on the losing the mind part. Exdh would always make me feel like I didn't hear what I actually hear or say things that I actually said, not to mention other family members. You may know the term "crazy makers?" Well that's what I have dealt with most of my life and 13 years of marriage so I do get triggered sometimes and due to what this doctor was doing it did just that. Also, because I felt like she was talking down to me as though I don't know anything about special education or anything much else. Many of you have dealt with this situation before. This relationship has become toxic and I have decided that I am leaving and moving forward. Even if we don't leave the area, I'm getting away from this place. After almost 3 years, honestly, I don't think we've made any headway with them and that's the saddest part because they are so well known and I gave them more then enough ample time. With this doctor it seems everything that was stated was going to happen, each visit it changed. Initially we started out going in one direction - we were going to start with genetic testing to start ruling certain things out like fragile x, etc.. and then it became more like the same of dealing with a psychiatrist. Not dealing with a specialist like she was suppose to be for middle difficult child and little dude basically has been left to just medication management and getting nowhere. Oldest difficult child left her therapist a while ago. Last thing her therpist said to her (at 16 no less) is that all she can do is get out of the house! WoW! Oldest asked at that time to go into foster care and almost did get HERSELF placed there thinking that was her only option. Yes, it's that bad with the little ones but that wasn't her only option but that is the way the therapist pushed her only I didn't learn that until this past week!
So tell me ladies please.......I can take it! Where did I go wrong, and I know it's only one side of the story, if I went wrong? Was I justified in being angry with her for no notes or treating me the way she did over the special education? I'm listening.......
Yesterday we went to the developmental pediatric psychiatric doctor. Initially, based on last appointment, we were suppose to have ms queen just do some more simple test (whatever that meant and whatever there was left to even do at this point-academic stuff). So we get there and the doctor tells us to come in to talk to us, no queen, instead. Ooookay. Hmmm So she begins a discussion right off with how difficult child is on tenex and I said noooooooo. You remember the insurance wouldn't cover it? We went back and forth about that a few minutes with her saying yes but didn't we get that figured out and get them to cover it? ( at that moment I hadn't recalled that we did)
I was a bit peeved then because I felt it was irresponsible as a doctor to not have notes on what she does with the child's medications each and every time we change or do anything with medications. So I go a bit set off. She said well how about if I call the pharmacy and see if they will cover it because I want to try this again? Huh?
Then finally I remembered that we discontinued it because difficult child developed a tick from it so I told her that. I said it's in your notes, it should be there to look and see. It seemed she was relying on me to recall. So she did go through her notes and the only thing she found was regarding insurance not taking it.
By then I was really starting to get even more aggravated because at that moment I was still back at the insurance issue and her notes and her statements to me (really wish I could recall full detail of conversation now) because I felt as though "how stupid of me not to remember right" is how she was making me feel. Well I'm a parent of 3 difficult children, one that is graduating at the moment and in the middle of college stuff, a rental that is in foreclosure and faced with having to move by end of June, a SO who's been out of work since a year ago May 30th and no luck with work and not knowing where we'll move to at the moment "incase he gets a job-which could even be out of state let alone across the state", and medication that clouds my head/memory at times that details can get jumbled on the spot or overall. Isn't SHE the one who is suppose to have notes, legally, on what she does with medications? And "I'm" the one feeling like I did something bad?
So we move on to other things. We discuss how there isn't a label currently for ms queen and I brought up the fact that her CA teacher (the one in charge of her resource room) suggested that if she had a label of Autism that there was some social skills classes or supports that they could offer but only "if". So I asked this doctor, since at our last visit we discussed difficult child having "some" of the characteristics of autism spectrum but that she didn't feel she exactly had it, how we could access getting this from the school. She went on about how she didn't feel comfortable giving difficult child that label to get these services AND how...get this....since difficult child doesn't display any social issues (like they can't get along with anyone or don't like to be around people) and any Autism Spectrum children "always" display this, particularly before age 3 (difficult child does in the fact that she can't get along with peers appropriately-i.e. immaturity, has to be first, interrupts, etc..but didn't display it before age 3). Now someone please correct me if I am wrong but I believe that to be not true? No how could I get her to understand nor accept this what so ever. Remember, this is a TOP Medical Facility here in NC (so again, if I'm wrong PLEASE correct me!) She treated me as if I didn't know anything, which she should know better after talking to other staff that have dealt with me and the difficult children there. She even said Aspergers was the same rule of thumb?
Then she brought up the fact that she had talked to difficult children past therapist and how she had agreed that difficult child would have benefited if she went to this residential day school (which would have been 5 days a week and home weekends). Therapist knew that it couldn't happen due to exdh and legal issues involved. So she wanted to know how I felt on something like that. I had already discussed this with this doctor before as well and told her the same thing therapist did regarding the legal reasons. Why was she revisiting it? I told her I did, after our last conversation, go to him and ask about it and as I had previously told her, it WOULD be a legal issue should I try to do it. Again, no notes on this in her files (As I'm sitting there I actually was seeing no notes apparently in file just the normal stuff basically of prescriptions written, reports of tests, etc...).
We started talking about diagnosis then. And she referred to labels and such and I don't recall exactly what was said but it came across as though, via her statements, that she felt as though I wanted a label put on difficult child. I told her I do not want a label, that's not what I am looking for at all. I want to know how we can help her or access services to help her. That's all. So then she asked if they were following the recommendations made by the pscyhologist who did the overall testing there and I said for the most part yes they are but there are other services she needs and I can't get. Like more help in math. This child is basically getting by on D's in resource classes and yet they keep passing her along from grade to grade and think it's ok because it's not an F. How is this helping her to learn? She said she needs tutoring. I said I agree but the school said that difficult child is getting all the services they have as it is and they have nothing more to offer her. I also let her know that SO and oldest difficult child extremely capable of tutoring math since they are almost genius in that dept but that difficult child just can't seem to "grasp" how to learn it and "that" is the problem. Not so much the tutoring.Well then perhaps we need the help of the law depart of the facility (of where we are at) she says. Huh? I'm thinking again, how is that going to help difficult child get figured out how to learn? I said, well based on what I know about special education the school has to provide what the child needs as long as it can be demonstrated she needs it and MY concern, and the whole point here is to figure out how we can demonstrate that difficult child NEEDS these services since on her testing it's not apparent by scores but yet she can't do the work. For example, a word problem- she can't seem to grasp what functions to use to solve it. In simple math she has just NOW been able to get to solving but don't set up a number problem that involves too many numbers like 345,897 + 34589= or 8765x3454= because she won't be able to do it well. For the multiplication she will sometimes add the problems or multiply it backwards almost like having dyslexia but she doesn't have that (she's been tested). And algebra...omg...no way could she understand equations and that will become a mandatory class. Money? She still doesn't understand money denominations properly or how to maneuver equations on that! This is passing a 6th grader???? So when I told this doctor what I knew about special education and what school has to provide she says "do you have a degree in special education?" I said no, but I've been doing this for so many years, I've been an advocate, I've worked with NAMI and other families and I've gone into schools for IEP's. She says again, "do you have a degree in special education?" Of course I answered again. NO! I said I don't need one to know what is the law!
So we move forward again (and as you can tell, I was getting angrier and more frustrated with her). I told her how her resource room teacher at the second to last IEP conference (actually I think it was just a conference) has asked me if difficult child had schizophrenia or DID or had been checked for that because we had been discussing how she can be jekyll and hyde in moods. I waivered back and forth trying to recall which the teacher had actually said at the time because it was quite a while since that had been and as I said, a lot is going on and my head is jumbled on the spot (later in care I recalled it was mulitiple personalities of course!). At the moment I said that the doctor looked at me strangely, like I had too heads or something was wrong with me. I got the feeling like.....oh I don't know exactly like I said something wrong (not to mention she said "what is DID?"- ummm this is an accomplished doctor who doesn't know what DID is?). I felt like I was suddenly under a microscope! Then I just about lost it completely with her. I got totally frustated and with what ever she said next and I wasn't nice about it as I snapped at her. She said "I didn't mean to make you angry". I said to her "I don't like being made to feel like I'm losing my mind or don't know what I'm talking about."
Ok so I can tell you all the underlying thing on the losing the mind part. Exdh would always make me feel like I didn't hear what I actually hear or say things that I actually said, not to mention other family members. You may know the term "crazy makers?" Well that's what I have dealt with most of my life and 13 years of marriage so I do get triggered sometimes and due to what this doctor was doing it did just that. Also, because I felt like she was talking down to me as though I don't know anything about special education or anything much else. Many of you have dealt with this situation before. This relationship has become toxic and I have decided that I am leaving and moving forward. Even if we don't leave the area, I'm getting away from this place. After almost 3 years, honestly, I don't think we've made any headway with them and that's the saddest part because they are so well known and I gave them more then enough ample time. With this doctor it seems everything that was stated was going to happen, each visit it changed. Initially we started out going in one direction - we were going to start with genetic testing to start ruling certain things out like fragile x, etc.. and then it became more like the same of dealing with a psychiatrist. Not dealing with a specialist like she was suppose to be for middle difficult child and little dude basically has been left to just medication management and getting nowhere. Oldest difficult child left her therapist a while ago. Last thing her therpist said to her (at 16 no less) is that all she can do is get out of the house! WoW! Oldest asked at that time to go into foster care and almost did get HERSELF placed there thinking that was her only option. Yes, it's that bad with the little ones but that wasn't her only option but that is the way the therapist pushed her only I didn't learn that until this past week!
So tell me ladies please.......I can take it! Where did I go wrong, and I know it's only one side of the story, if I went wrong? Was I justified in being angry with her for no notes or treating me the way she did over the special education? I'm listening.......