Current mood:
vexed The terms psych, pdoc, shrink are all going to be referring to psychiatric stuff, like doctors, offices, etc.
We got word that K's pdoc is closing his practice. So the scramble to find a new pdoc is on. Now I'm dealing with a lot of people who just DO NOT get it. To them it's simply a matter of calling a shrinks office and scheduling an appointment...
For us it's a bloody 3 ring circus. ring 1 is finding a doctor who's willing to accept K as a patient and has openings... ring 2 is finding them willing to accept her but also willing to take the medical coverage we have cough*Medicaid*cough and to be approved for services ring 3 is documenting that I'm not guilty of bad parenting, psycho, nor have Münchhausen's by Proxy (MBP).
So far out of the list of places I can go to: I can rule out the Mental Health Center (MHC), One psych practice (HP), and 1 to 2 other psych practices (D or SV). I've got calls into places... Now it's just wait and see what comes up.
I can rule out the MHC because they have very high turn over and a new "flavor" of the ____ (day, month, week, quarter) not good for someone with trust issues. 2nd I can rule them out because they don't want to keep her on the program that has worked so well with her so far. And one thing I have learned about autism is if it's not broke don't mess with it. and the final reason for not dealing with them is they want to change her meds to things that are more politically correct. Yes, I know there is a lawsuit going on about the med my child is taking. No that doesn't make me a bad parent it makes me a freaked out parent who's more terrified of what will happen without said med than what will happen with it. Hence, why the requested blood draws to check blood sugars with crossed fingers.
I can rule out the one psych practice HP because they are heavy with an agency here that we were involved with once upon a time. That agency was very heavy into not advocating well for us. Or as the one doc put it they were really good at sabotaging our efforts for her to get a descent program in place for her so it was clear in their eyes that the agency wanted us to fail so they could swoop in and save her from us and get more funding for their program which would be worse for K than what she was in. Sadly since ending with the agency I've heard this from numerous other sources that this is in fact how they have operated with others on more than one occasion. So not going to fall back into that pit again. Besides they are very pro getting her off what is working now and on to something more politically correct based on it being politically correct. Who needs that?
I can rule out D simply because we had been with them and we had been asked to remove ourselves from their program. Why? Because of my mother having words with a nurse. My mother got rather verbal with a nurse and that caused the nurse to remember who I was from a dark dark chapter in my past. Since she remembered who I was; she also remembered a scene that happened with her friend and me. Again this was a very bad thing that happened and to this day HASN'T BEEN REPEATED. And wouldn't have happened had her friend not decided that she knew better than me as to what I was to do. She actually yelled at me that she knew who I had been talking to and what their instructions where. It's a long horrible story and to put it short and sweet. I had called and talked to my pdoc and counselor who advised me to get to the pdocs office NOW!!!
Because I was having an issue with my medication and some PTSD. The gal tried to stop me from following my pdoc's orders and repeatedly claimed that she was right and I was wrong. Even after both my pdoc and my counselor agreed that if I hadn't been chased down, threatened, told that I didn't know what was happening, and exposed it probably wouldn't have happened. It also was a clear indication that my meds needed to be changed. And since going off the meds a repeat incident hasn't happened. However, it has cost me getting neurological care for the last 15+ years, it has cost me getting psych care for my children for the past 11 years. And what really makes me frustrated is the fact that we can lose said care and be kicked out of a practice based on one nurse's friends incident. NOTHING had ever been said or done towards this nurse that could be put in the same league as her friend. Yes, we asked questions, Yes we demanded answers Yes, we argued about the orders and getting a diagnosis but we didn't shriek, hit, punch, chase, corner nor rip clothes off to get them. And the worst of it is we had a good working history for several months with no indication of a problem until her memory was jogged and we were dropped all in the space of 10 minutes of time. She interrupted our session told the pdoc her sudden revelation and he came in and instead of giving us help told us to get out of his office and out of the practice. To this day they pdocs at this place refuse to deal with us based on the fear for safety of this 1 person based solely on what happened to her friend. (BTW, I never was charged for anything)
The other practice I have a call into SV. The only reason I have a call into them is that K's counselor placed the call to refer her to them again. I got the call back from SV's office but wasn't able to take or return the call until today. It will depend totally on what the practice decides as to if we will or won't be allowed to go there. The poor gal who took the call was surprised to learn why we left. She said that one of the temp secretaries had told her the same version I told her but that she had heard from another more respected person that it wasn't true. She has her doubts about us being seen. She even dared to ask why we would even want to attempt to come back there. And honestly I said I didn't think we had a chance to get help from them but with no pdoc we had to try. However, their is a new pdoc fresh from school coming in Aug./Sept. that she might see about us getting into. I will have to bring in letters of recommendation stating that I don't have MBP and that I haven't had a repeat of the episode that involved me losing control again in the last 20 years.
Now the reason that there is an issue here is 2 fold. Problem 1 is that the pdoc we saw used the word and phrase combos of autism, autism like, high functioning autism and atypical autism numerous times. There was an advocate from an agency with us at the appointment she counted 37 uses of the word autism, 17 uses of the phrase atypical autism, and several other combos numerous times. But she refused to come right out and dx K with autism. Now in getting a copy of K's medical file from them... There was a statement that this pdoc had diagnosed K with autism but to this day this pdoc denies it. The other part of the problem is we had a schedule issue. K flipped out and refused to go inside. I couldn't physically make her and she was in such a rage that I needed help so I went inside to get help and was told that no one in the office could come help us. Now ironically this was why we were sent to see this pdoc in the 1st place. Yeah we were late for our appointment because we couldn't get K off the post, through the door or out of the elevator. but we were also there for our appointment all the pdoc had to do was come out of her room and assist with talking K down. Again we were kicked out of the office and safety was mentioned as a concern. So this is why it could be decided that we won't even get to see the new doctor.
I do have calls into 2 other pdocs... But not sure if it will work for us to get in there.
The good news is the ped. has decided that he can write the notes for home school, gfcf diet, inositol, melatonin, filtered water, and Epsom salt baths. That's a huge thing. He won't do the meds since they are out of his league.
The other possibility is to see an OB nurse thingy...I know I'm horrible. I don't know how you describe those who want to be doctors (have intense god complexes) but won't go back to true medical school to become a doctor...We have the chance to take K to see one for her psych meds. I'm a little concerned about a non-pdoc writing scripts and being comfortable prescribing major big gun type psych meds when most regular docs wont, kwim? There will be no problem with her giving you meds for this even when most won't because of the lawsuit... I agree that K will need this type of nurse wanna be doctor eventually but I'm not sure now... And just how bad is it going to be when I say I don't want the new HPV vaccine because I don't want to risk another vaccine reaction??? Besides the pdoc, pediatrician, naturopathic doc all feel this isn't necessary at this time because she's least likely to need it based on where she goes to school. and how she's not alone on her own at all. I guess we will find out on Tuesday...
Now for E... He went in for a review about the PTSD. It will go before a committee and he'll get the results in 2 to 3 weeks. All I can say is that I wish the committee could have spent time with him leading up to his review and after his review on the way home... It might have just left the impression that he still needs help and that he's not getting the help he needs as it stands. I thought that we were going to die at least twice and that's the bare minimum of times it crossed my mind. It reminded me of a remark that a relative used to make about Catholics. he always claimed to admire them because they always had something to do in the event of a crisis or waiting for a crisis to hit (meaning foxhole in WWI & WWII) cause they would do the rosary. This is not to offend or belittle Catholics just noting an observation that was told me. I seriously wished I had something similiar to do that would have taken my mind off of the close calls. ;)
The other thing that this week has done is caused me to seek out people for statements that I don't have MBP. Relocating sounds like sooo much fun... Just don't have a clue as to where I should even consider going....
Guess I'll just consider jewelry class in a few minutes... lol
and yes, I'm reliving my days of freedom
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