Update

Discussion in 'General Parenting' started by flutterby, Jan 8, 2012.

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  1. flutterby

    flutterby Fly away!

    The NP-psychiatrist we were seeing was a huge disaster. After becoming severely depressed on Luvox, then Buspar, her response was, "Maybe medications aren't the answer." I spoke my mind, and then cried for 20 minutes after I got off the phone.

    We saw a new psychiatrist Thursday who we both really like and who was very thorough. Her current diagnosis's are: psychotic disorder, anxiety disorder, depressive disorder, and of course the Pervasive Developmental Disorder (PDD)-not otherwise specified. This psychiatrist knows the NP-psychiatrist as they used to work together, and at the end of the appointment he said, "For the record, I think she definitely needs medication."

    He switched her from risperdal to seroquel because seroquel has been shown to help with anxiety in kids, in addition to mood regulation and psychosis. He has also added daily morning klonopin, as well as for PRN.

    difficult child is on homebound at school and that is a battle in and of itself. The teacher is flakey and has canceled more than once. They are absolutely against me being present to keep difficult child calm, so I told them that I expect homebound teacher is qualified to handle panic attacks and hallucinations. As horrible as it sounds, I'm not going to be available if they call because she's having an episode. They created this situation, they can deal with it. They need to realize what I'm talking about. I can't even go to bed before she does. And I've hit my absolute limit with them. And with about everything else.

    That's it in a nutshell. Sorry I haven't been around much. I'm busy tying a knot in the rope and holding on.
     
  2. Marguerite

    Marguerite Active Member

    I really hate being frozen out of my child's care and/or education. difficult child 3 is currently seeing a specialist employment counsellor at an agency for people with disabilities. The guy keeps me out of the appointments and doesn't even talk to me any more about the issues. He has told difficult child 3 he expects him to keep up with what he has to do. Things like make sure he shaves and combs his hair before an appointment. I need to know too, because although difficult child 3 is about to turn 18, that's just due to a date on his birth certificate. Inside his head, he's a six year old kid with a high IQ. difficult child 3's idea of cleanliness is wearing a really good deodorant each day will remove the need for a shower more than once a fortnight.

    Kids like ours will take a lot longer to be self-sufficient, and they shouldn't shut out parents just because "She should be able to do this without support at her age."

    I found, with some of difficult child 3's teachers who tried this tack, that if I made myself available (reading a book or doing some paperwork out of earshot but within available range) then they quickly learned that I was a resource, not a hindrance.

    With that flakey teacher, I'd be going over her head at the first sign of problems. You can't cancel on a kid like this. It sends a message that the teacher can't be bothered, that the child is a nuisance who does not deserve good support.

    I hope things settle down for you soon. This sounds very disruptive. Sometimes you have to let the education side go hang until the medical stuff can be sorted out.

    Marg
     
  3. ying and yang

    ying and yang New Member

    Hello I am new here, and did not introduce my self yet, since I just joint this forum. My son was diagnosed with body dysmorphic, severe Obsessive Compulsive Disorder (OCD), anxiety, panic attack, severe depression, anhedonia, negative symptoms of scizophrenia, passive aggresive personalitY desorder, ADHD and ect.....He was having unrealistics fears and was delusional. Would you please be so kind and when you will get a chance, describe her hallucinations, Obsessive Compulsive Disorder (OCD) and fears. What if this is just subclinical seizures???? I will intriduce myself next week, since I am working and can not do it wright now... Thank you!!!
     
  4. ying and yang

    ying and yang New Member

    Also, did you you check her vitamins deficiencies, like Vitamin D for example... cortisole(sp?), thyroid panel? Just a quick thought........
     
  5. flutterby

    flutterby Fly away!

    Marg, the school district is of the opinion that I'm the problem. They say if I'm present, I'll be distracting. They moved homebound instruction from the public library to a school building, because at the library they couldn't keep me from being within eyesight of difficult child. Even though all I did was read a book - I couldn't even hear what they were saying. I was just there.

    Ying/Yang - she has primarily auditory hallucinations and paranoia. She's in a constant state of fear. Pretty much everything scares her. Yes, she's had all of those things tested.
     
  6. Marguerite

    Marguerite Active Member

    Depending on which teacher and how he's coping (or not), I stay out of difficult child 3's line of sight (out of the teacher's too if necessary) but within earshot if I can. At least within earshot of raised voices...

    I have also directly (but gently) challenged any suspicion I have of misconceptions. "Please outline for me your concerns that I may be a distraction for my child. Let's discuss how I can be a resource for you, without risking being a distraction. I accept that you are well trained in managing such special needs students but please be aware, this is my child whose moods and behaviours I know extremely well. Sometimes I can speed things up for you. Sometimes he seems to be paying attention but is actually zoning out. At such time he needs the subject content translated for him into terms he can comprehend. I will leave you to manage on your own as you wish, but I will be just over there getting my own work done if you need me, and also for you to brief me afterwards so I may follow through at home to ensure she continues to work to your direction."

    If I do not get the update on the lesson (all I want is about 30 seconds of "we did this,") then I go over the teacher's head. When I had one of his teachers accuse me of doing his assignments and exam essays for him (a very serious breach of rules here) I went to the principal as well as the head teacher and SpEd to get them on side. My reputation at this school MUST be squeaky clean. I actually suggested to that teacher that she be the one to suggest this accusation to difficult child 3 face to face so she could gauge his reaction (it would not have been pretty!). To this day, difficult child 3 does not know this was ever suggested. I never got an apology, but the more senior staff all assured me they had dismissed the suggestion. I told them I did not want any apology forced from someone. So - no apology, but that teacher's manner did change in a positive way over the next few months. We get on well now, she stops and chats to ask how difficult child 3 is going.

    I generally leave difficult child 3 alone with his teachers now. But I stay within their range where absolutely possible. Two years ago I definitely stayed closer. For study days (when we have a group of students, from about 4 to 34 all in the same room) I still tend to sit in the room around the corner. Science study days when I've done this, I've found myself recruited by school staff as an unpaid aide, because they know of my science background.

    When difficult child 3 had his computing exam last year, I was not allowed to be in the same room (of course). So I went to a room which was two rooms away - it was in a large library with two glassed-in anterooms on opposite sides. difficult child 3 was in one small anteroom, with screens to eliminate the visual distraction elements. I was in the other, watching through the glass to see any activity through the door of difficult child 3's room. When some city workers began to use noisy leaf blowers outside difficult child 3's room, it was a race between me and SpEd as to who was first out the door to ask the workers to wait an hour before making noise. After the exam I went out to thank them and let them know that the exam was over. difficult child 3 got 84% in that exam, we found out just before Christmas.

    Give the school district plenty of rope. Let them do it their way, but hold them to their responsibilities. Do not give them any ammunition to be able to continue to say, "It's the mother who is the child's problem." After several terms of you staying out of the way and her failure to improve, get back to them and ask them if their opinion still holds. If it does not, ask if there can be a more productive way to utilise you as a resource. And ALWAYS require feedback from them "in order to ensure we are on the same page with her curriculum requirements." Eventually they will realise it is easier to say it all once, with you allowed to be in earshot through the lesson.

    I can see why they think the way they do - when you have an anxious student, the first assumption generally is that the person closest to the child is the one making them most anxious. Often it's a false assumption, but it is still one which they must be allowed to test. I find that generally the first meltdown, especially after I deconstruct it and defuse it, changes their minds fast enough.

    Marg
     
  7. flutterby

    flutterby Fly away!

    Marg, they've seen plenty of meltdowns and they have seen me diffuse them. In fact, one of them happened in an IEP meeting in front of the SpEd director, and I had to take difficult child outside. It took 45 minutes to calm her and they continued without me - not legal - while the SpEd director just talked more loudly over difficult child until I could get her out of the room. It took 2 of us, by the way, to get difficult child out of the room. difficult child's therapist and a SW were there and neither one of them could believe how the school district reacted - or didn't react.

    I understand what you are saying, but this school district has fought me for 9 years. It's a different ball of wax.
     
  8. Marguerite

    Marguerite Active Member

    As I said to an official I was negotiating with the other day, "I prefer to cooperate and work as a team. But if I try this and cannot get cooperation, I will go so far over your head you will get athlete's scalp." (I pinched that lone from M*A*S*H but I felt justified).

    If you have tried to discuss this with them and despite appearances to the contrary, they still persist in seeing you as the problem, go higher up. And if that is no good, keep going higher and higher. Continuing with the meeting in your absence alone should have been sufficient reason to complain.

    While we let their bully tactics and misinformation stand, it will persist. Too often as parents we put up with more than we should, because we're concerned about what other people will think of us, or we're concerned about what they might do if we annoy them. Sometimes you just have to take a deep breath and be politely firm.

    Not easy, and you might need help. But without forcing change, it sounds like they won't.

    Marg
     
  9. TerryJ2

    TerryJ2 Well-Known Member

    Marg, LOL!

    Flutterby, sheesh, what a mess, but I am so glad you changed doctors and the next one commented that medications would help. I'm thinking that at least means he's open to suggestions.

    Welcome, Yin and Yang. I look forward to your introduction on a brand new thread when you get a chance.
     
  10. flutterby

    flutterby Fly away!

    Marg, I went to the state DOE and they stated that the school district couldn't keep me out of the library, but depending on what their policy is on "class observation" they can get away with it if they move the sessions from the library. Which they did.

    So, I'm just not going to be available for the tutoring sessions. They created it; they can deal with it.
     
  11. flutterby

    flutterby Fly away!

    Oh - and I don't give a damn what anyone thinks of me. Some people do worry about making nice and not hurting feelings. I don't suffer from that problem, when the situation is warranted of course.
     
  12. Marguerite

    Marguerite Active Member

    I'm with you on that one. I've seen too many parents hamstrung as advocates for their kids, because they don't want to offend the school staff or because they're worried what the staff will do to their kids as a response.

    Very unhealthy.

    You go do what you gotta do. Sounds like you're at the end of your tether with these people and you're not taking any more crud from them.

    Marg
     
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