Confidentiality or Cone of Silence??? Open to advice....

Discussion in 'General Parenting' started by Rachel W., May 9, 2012.

  1. Rachel W.

    Rachel W. New Member

    Hello all. I'm a newbie with a question regarding confidentiality at school. My difficult child/easy child (depending on when you catch her) will be 8 in July. She is Pervasive Developmental Disorder (PDD)-not otherwise specified, diagnosed at age 5, with possible Obsessive Compulsive Disorder (OCD) comorbidity that I am still trying to get diagnosed. We have been very, *very* lucky in our school placements so far. We have been working at home and at school to help her overcome aggression since age 3.5. Thus far, in spite of her social issues she has managed to keep academics at and above grade level consistently since kindegarten. The one issue that continues to nag at me is that there seems to be no way to communicate to her classes what is going on with her, so the kids she is with and their parents will have some context for her behavior. I discuss this with her program coordinator every year, and every year the concern is "confidentiality." The only problem is, I've got a kid with a development disorder who in spite of all the behavior mod we are doing acts out periodically. We don't let her get away with it, we do discipline, but it happens in spite of all we can do. *It is no secret that something is up with my kid!!!!!* Everyone at school "knows", but I am not allowed to say why! Nobody would tell a blind kid to pretend to see, or a deaf kid to pretend to hear! Why is it such an impossible thing to explain that my kid doesn't think like everybody else??????? OK--thanks for reading rant. Any advice is more than welcome.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Tricky. And touchy.
    In the short run, I get where you're coming from.
    In the long, it can come back to bite you.

    If your kid was, say, Downs syndrome, it wouldn't be the same problem - it is a permanent disability.
    But Pervasive Developmental Disorder (PDD)-not otherwise specified is fuzzy, the diagnosis may change over time...
  3. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Quite honestly, it's not up to the school to decide if you say something to mom1 or mom2 about your difficult child's issues. It's your choice to share or not to share. It is also not up to the school to share your difficult child's issues with anyone who asks.

    My son had serious behavior issues from 2nd through 5th grade (and to a lesser degree through middle and now high school). It was difficult for him to maintain friendships. It was difficult for other parents to accept him. He had two friends whose families cared and accepted him for who he was and we made that work. I was not interested in parents who judged my child. Children did ask me and the teacher many times why difficult child did this or that. I explained in a sentence or two as was age appropriate.

    Funny thing, my difficult child didn't really know what he was missing. He had one good girl friend and one good boy friend and I made sure there were plenty of out of school social meet ups and fun excursions.

    If you want to tell someone that your daughter deals with this or that, it's your business. I wouldn't be holding a class/parent meeting about it, but I would use discretion with only those truly interested in interacting with my difficult child (as opposed to someone just looking for some juicy gossip to share with the other moms at the coffee shop).

    It's a struggle we all go through on this journey of being the parent of a difficult child.

  4. llamafarm

    llamafarm Member

    My difficult child always had issues that would show up in class. I explained what was going on to the people who needed to know or the people I wanted to tell. I find now that my difficult child is 11 that worked out okay. I tell parents of difficult child's friends, or the parents of the kids he spends time with, I tell coaches, I inform whoever will have contact with him for any amount of time. My difficult child looks "normal" no one would ever guess what is going on inside that body/mind of his. I feel you should share what you are comfortable with. My mother used to question my giving out this info, but I find after I explain things he surprised people by how well he behaves! Don't ask... I don't know why. It is your information. It is yours to give out as you see fit.
  5. TeDo

    TeDo Guest

    From the sound of your post, it sounds like the program coordinator misunderstood what you were asking. THEY can't say anything to anyone because of confidentiality laws but YOU can if you choose to. You might want to ask them when and how YOU can inform certain parents (and kids if you choose) about what is going on with your daughter.
  6. keista

    keista New Member

    "Confidentiality" means that THEY can't say anything to the students or parents. Even if a child is obviously blind and another parent asks what's wrong with that child, they (the school ppl) can not say. it's illega for them to say. If they did (even in an obvious situation) they are breaking "confidentiality". You, on the other hand, can say anything you want to whomever you want.

    I prefer telling ppl if I have the opportunity. However, I've never made a class announcement.
  7. whatamess

    whatamess New Member

    Ok, I know parents who go into the school and/or classroom and give talks to the child's classmates to help them understand the disability. I know teachers who have gotten permission and given these talks to their students. Sometimes, high functioning children give the talk themselves! This is appropriate and needed!
  8. Rachel W.

    Rachel W. New Member

    I really appreciate all of the responses here. Thanks for taking the time. As it so often is, this is more than just about her school--it's just that she needs more contact with NT kids and I am trying so hard to make it happen. There are a couple of parents I've told, and she is in the school Brownie troop which is nice and small and the leaders know. Her head leader is wonderful about it, the co-leaders are nice as well although one is also a scientist who :sigh:clearly finds her symptoms fascinating....

    It just takes so dang many spoons to get it all done sometimes. Again, your input means a lot.
  9. buddy

    buddy New Member

    They absolutely CAN say something and do an educational session IF you give permission. We had that very situation (though it ended up being too vague and just when we were going to do a do-over, we left the school).... it is done for kids on feeding tubes and for kids with autism, or a trach, or electronic communication systems etc. They key is whether or not you give permission.

    I tell people all the time now. I used to be more secretive but have found that when people understand they are generally kind and accommodating. Especially the kids. Common sense is the key. Would you want to humiliate a child by telling specific challenges like bathroom issues, or fears ...NO... but explaining that Pervasive Developmental Disorder (PDD) makes it harder to learn how to understand what other people are thinking, to follow rules in games, or whatever the issues you have are (so different for different children)....there are even books on it...that tell it in a story format. Depends on the may or may not be a similar situation so it could help.

    There is the whole 6th sense series too, but the nurse at our former school said when she does this it works best to have a one page/five minute presentation for the class that just hits the biggest issues. We added for my son's case that though he can be loud and sound like he is scary at times, he does not hurt children and if they ever have a question, they can ask the teacher or me.

    In my neighborhood I told kids last year. Now, when new kids come I have heard kids pull other kids over to the side and explain in a respectful way! Just a month ago I heard a girl say I dont like him he did X and this girl grabbed her arm and pulled her aside (thank heaven because Q would have defended himself and made it worse). She also saw that I was standing right there and looked very sheepish and tried to say "hi" in a sweet tone to me... but they were good the rest of the night. (this girl has an aspie bro. in the army, a bro. who was in a level 4 EBD class and she herself has language processing problems so their family has a little extra empathy).

    Anyway, it is tricky and they will be protective of themselves legally but they have no legal right to tell you what YOU can say and if you give permission it is totally fine to do an educational presentation about her disability.