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libera

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    libera got a reaction from MomWithOCDSon in Patholigical Demand Avoidance Syndrome   
    I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause.   Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS.  Is PDA syndrome really  describing a manifestation of auto immune disorder?   I would say very possibly.
    Truthfully,  to me,  the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal.   Because not only do we battle in treating the auto immune disorder, we battle with its presentation.  And to me, the latter is actually the harder of the two battles.
    It is already tough to deal with the high anxiety/school refusal, but it is even worse when the prescribed strategies don't seem to work AT ALL.     But what they have determined with PDA syndrome is that normal strategies DO NOT WORK FOR THIS KIDS.  To me, this is huge!   This so correlates with our experience!  So now we might have some better ways to deal with the presentations!   Some insight on to what is really going on and HOW TO DEAL WITH IT!  In the UK, where the PDA syndrome diagnosis is widely accepted, there are actually schools to deal solely with children with PDA.  (But on the flip side, these kids may never get the real help for the root cause of their issues).
    I am currently reading Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, et al.
    Anyway, I just thought I would share . .  sorry about the weird spaces and punctuations but I am doing this without my glasses on, which really isn't the best idea.
     
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    libera reacted to dasu in I want to know the "why's".....   
    We are all there. Isolated, frustrated, abandoned, whatever.
     
    A lot of the misery is from kids who are just sick but attack us parents verbally and physically, refuse to cooperate with about anything and instead try to order us parents around. Abuse from kids, abuse from doctors, abuse from insurance companies, etc. About the only two places I feel welcome are Dr L's and their psych doc.
     
    lll bite. Here is my stream of consciousness rant. I have really struggled with the isolation and sense that life is passing us and our kids by. Other people are moving along with financial plans - their stock portfolios, their 401ks, 529s while all of our money goes to medical treatment. We see people taking vacations, we can hardly leave the house without anxiety. The parents are involved in activities outside the home, moms exercise or get to meet up and talk, dads get to go out and hunt and fish; we, if fortunate enough to get the kids asleep, sit in silence and browse around on the ipad. We watch their kids excelling in school, sports, arts, music; we call a few minutes of surreptitious home school a success. Well they do play piano well enough. Families at church talk so much about instilling morals and values in the kids; ours have no respect for parents, talk about cutting heads off and weird proto-sexual notions that bounce around in their head. If I get on facebook everyone has these super cute pictures of their beautiful kids; ours are posing obscenely; my daughters hair is a frizzy mess because she cant bear to comb it; both kids teeth are yellow because they refuse to brush their teeth;yet I am just happy they are wearing any clothes at all;.
     
    I was reading to my kids a while back from the Little House series. When I was a kid I took away the adventure they lived and the awe of moving to wild and fresh places before civilization came. Nowadays I appreciate those books because I see the adversity they endured and overcame. This was old school, they were supposed to grin and bear even starvation. I have taken in a lot of lessons. IOne of my favorite quotes is from Ma "The sooner you accept that life is hard the more you can appreciate the good things in life". Appreciation of the simple things shines through those books, whether it was joy for a single piece of Christmas candy or over the joy her family brought her.
     
    PANDAS is transforming me as a person. I no longer get spend time fawning over little things, like houses, clothes, new cars. Some of that is not by choice, some of it is. I fought it at first but now have moved into acceptance, and with it realization that my values were being changed in this awful mess. I saw this very same change occur with my sister who has two PANDAS kids. I did not get it at the time, but I do now. So many things she valued and sought to instill in her kids were stripped from her - love, education, achievement, culture, art, world travel. She went from plotting out educational experiences and inspiring vacations to plotting out doctors visits and churning through endless rounds of psych meds and alternative treatments. She fought so hard for her kids and had to focus on friends and care. She is recovering some of her life now that her two sons are older (and dysfunctionally stuck at home sadly). But she is also able to enjoy seeing her youngest son thrive in college and a engage in a rich social life.
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