qannie47 Posted October 18, 2013 Report Share Posted October 18, 2013 I think ds7 is possibly wax/waning out of 3 week episode. Because of the wax/waning, the school is perceiving this that ds is choosing to act out, so more behavioral based. They feel that he has control all the time... While I get that there is always a behavioral component, (I think a long episode can result in some habits), I am having a difficult time trying to explain that there is fine line for ds when he is "able" to make good choices, and when he is "not able" to because of what is going on with him internally.....problem issues: verbal disrespect, impulsive calling out in class, anger.... Anybody come up with a good way to explain it? The school is really trying, and has been good, however, I think if they only embrace the behavioral component, that could open the door for some not good stuff... Link to comment Share on other sites More sharing options...
rowingmom Posted October 18, 2013 Report Share Posted October 18, 2013 We saw this with DD as well. She has had years of CBT and understands the correct way of reacting to any specific situation, and could always tell you when you asked "What should be done in this situation?". When she was herxing she was still able to articulate the proper behaviour response, but was unable to follow through. When she is feeling good she behaves wonderfully. No ODD, no attitude, no impulsiveness, no disrespect, just happy and helpful. Link to comment Share on other sites More sharing options...
smartyjones Posted October 18, 2013 Report Share Posted October 18, 2013 are you in public school? does your child have a 504 or IEP? I would suggest you contact your county. you need help from the spec ed and behavioral specialists who know what they are doing. you can very nicely tell the school that you are doing this, so it is not a situation that you went over their heads without their knowledge. or you can first ask who in at the county level would be able to help. with that, you give them the option to reach out first. our personal experience was that things spiraled out of control INCREDIBLY quickly b/c the school personnel didn't know what they were doing -- just lack of experience and knowledge and reverting back to what they know and think rather than listening to understand what I was telling them. what I fault them for was not being able to realize they were out of their league. the county personnel were on the ball and informed and jumped up to the plate to research for a crash course in pandas. the school, for some still inexplicable reason, was reluctant to call in help from the county. I would suggest you not try to get into an educating them situation but rather talk in terms they understand like - 'Asperger-like' behaviors; intermittent extreme anxiety. I think they do better when they feel they are in familiar territory rather than thinking pandas is some outer space new diagnosis that only the mother can understand. a friend of mine just dealt with a similar situation, no pandas diagnosis - child with an IEP that was struggling in school, just spiraling down. she reached out to the county who have the experience, knowledge and wherewithal to find solutions. this could backfire in that then you have called in the 'big guns' but my experience is that the big guns are really interested in finding solutions b/c they have a better understanding of lawsuits, etc and are just much more on the ball. good luck. rowingmom 1 Link to comment Share on other sites More sharing options...
airial95 Posted October 18, 2013 Report Share Posted October 18, 2013 Provide a well written letter from your PANDAS doctor - that was critical for us. Link to comment Share on other sites More sharing options...
pr40 Posted October 18, 2013 Report Share Posted October 18, 2013 it all depends how obstinant they are. if they believe that your kid's behavior is a choice, hit them with the biggest arugment you have like, as previous posts suggest, 504. Link to comment Share on other sites More sharing options...
3bmom Posted October 19, 2013 Report Share Posted October 19, 2013 I found out later that my DS shouting out was a verbal compulsion that he covered up with jokes and disruption. When I asked the teacher to make note of it and let me know she brought it to the attention of the entire class. Needless to say things didn't go we'll. We had a 504 too. I would bring in the big guns for experience. They will have better expertise and maybe ideas to help. Link to comment Share on other sites More sharing options...
Mayzoo Posted October 20, 2013 Report Share Posted October 20, 2013 We home school, so I have not read these, but I think I heard they helped some folks: Pre-done letters for school re PANDAS: http://pandasnetwork.org/resources/for-the-school/ Website re PANDAS and school: http://pandasparentsymposium.blogspot.com/p/dr-jamie-candelaria-greene-phd-bcet.html Link to comment Share on other sites More sharing options...
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