Behavior...do you even try to explain it to people?

[ajcire]

When people witness "off" behaviors that could be seen as obnoxious behavior that could be fixed with a little discipline (said totally tongue in cheek) do you even try to explain it? My 7 year old ds is really mild with all this but his behavior can be just obnoxious. He is really bright which just adds a different level to the obnoxious if that makes sense. My daughter is often his target (not physically but just the verbal nastiness). His arguing... I got that look from someone close to me today that said, "Why are you letting him behave that way" and I tried to explain it and that I wasn't letting him get away with anything (I do deal with behaviors but I have to pick and choose because otherwise something little will escalate to bigger)... I can't explain it to people who don't get it. I got that look from this person that I knew right away she thought that I was clearly making excuses to justify bad behavior. I am starting to find myself getting embarrassed by him and that is breaking my heart because what kind of mother is embarrassed by their child... and worse is that I know that he is just mild. Part of me though is starting to question how to know what he has control over and what he does not. What to punish and what not. I know I can't let him get away with stuff but how do I keep punishing him for things that might be beyond his control. At the same time I realize how stupid it sounds to people to hear that I believe my child has an illness that causes him to be obnoxious and nasty at times... seriously, it sure sounds crazy when I listen to myself.

 

This will sound dumb but often my son changes his voice... sometimes it sounds almost babyish how he is talking. It's making me crazy. If I remind him to stop and talk in a normal voice he will but ugh.. do you think it's part of this or just an annoying habit of his?

[Suzan]

When people witness "off" behaviors that could be seen as obnoxious behavior that could be fixed with a little discipline (said totally tongue in cheek) do you even try to explain it? My 7 year old ds is really mild with all this but his behavior can be just obnoxious. He is really bright which just adds a different level to the obnoxious if that makes sense. My daughter is often his target (not physically but just the verbal nastiness). His arguing... I got that look from someone close to me today that said, "Why are you letting him behave that way" and I tried to explain it and that I wasn't letting him get away with anything (I do deal with behaviors but I have to pick and choose because otherwise something little will escalate to bigger)... I can't explain it to people who don't get it. I got that look from this person that I knew right away she thought that I was clearly making excuses to justify bad behavior. I am starting to find myself getting embarrassed by him and that is breaking my heart because what kind of mother is embarrassed by their child... and worse is that I know that he is just mild. Part of me though is starting to question how to know what he has control over and what he does not. What to punish and what not. I know I can't let him get away with stuff but how do I keep punishing him for things that might be beyond his control. At the same time I realize how stupid it sounds to people to hear that I believe my child has an illness that causes him to be obnoxious and nasty at times... seriously, it sure sounds crazy when I listen to myself.

 

This will sound dumb but often my son changes his voice... sometimes it sounds almost babyish how he is talking. It's making me crazy. If I remind him to stop and talk in a normal voice he will but ugh.. do you think it's part of this or just an annoying habit of his?

 

You reminded me of a conversation I had with my Mom a couple of months ago when I told her maybe I was just crazy, that there was nothing wrong with my dd and that I was just a bad parent and she was just a rotten kid. But then things got worse around here and I was reminded I was doing my best (hopefully). I think it's normal to question when these symptoms are so strange and I think it adds to making it hard to get recognized by the medical and general population. I have had different times where I was embarrassed by my kids but that was mostly before I knew about PANDAS. I saw a women I had not seen for a while and she said she used to think my younger dd was close to autistic but now she seemed totally "normal". I think I was ignoring a lot of what others might think, maybe self protection or something.

 

Anyway, I'm just rambling.... my younger dd talks like a baby when she's in an episode. Sometimes she can turn it off and sometimes she can't.

 

Susan

[faith]

erica,

personally I would not explain this to other people that don't know you. I have gone thru exactly as you describe, behaviors that looke like my son is not disciplined enough, I certainly did/do my best, but he is just a little harder to discipline and deal with, usually just a little strong minded than I was, he exhausted me. still does. You basically have to just deal with it and I think you/we still have to show them what is right and what is not, and what they will and will not get away with. wether it actually 'works' is another story, lol.

 

I do think the baby talk may be a little part of all this, altho my son has a friend who does that when he did something wrong when he's in my home or while we are out and he's under my supervision, he'll give his excuse in this dumbed down baby type voice, like he thinks its all a big joke and doesn't get that what he did was wrong. he's adhd I'd say, but no other issues, not PANDAS.

 

 

Faith

[smartyjones]

I can't explain it to people who don't get it. At the same time I realize how stupid it sounds to people to hear that I believe my child has an illness that causes him to be obnoxious and nasty at times... seriously, it sure sounds crazy when I listen to myself.

 

 

i think those statements are key. it is so hard to understand unless you live it. i don't really think i would have been able to comprehend it before i've lived it in my own home.

 

our families are aware of pandas but don't really understand or put in much effort to know about it. friends seem to be more understanding and willing to learn what i'm talking about.

 

i can't remember how old your son is. mine is still only 5 and i usually just pull him out of the situation rather than explaining to others. not necessarily as a discipline - just get him out of a situation i don't see as good.

[Iowadawn]

Erica-It can feel embarrassing dealing with behaviors in public or around people you don't know. Believe me, we have had our share of experience. Wee..! Yeah, and the "inconsistent parenting" remarks. They can bite. First, you do not owe anyone any more of an explanation than you want to offer. If it is someone you see/rub shoulders with fairly frequently you may give them a little explanation at a "neutral" time. I would come up with a simple succinct description of PANDAS. I find the term PANDAS throws people-then the glazed eye look sets in when you explain the acronym!! I stick with "an autoimmune response....."

 

Any person in our situations is going to feel embarrassed. No amount of getting torn inside about it is going to make people change the way they think. Maybe after 8 years of reactions or looks I am getting (finally) steeled.

 

Comments like your example are just plain rude. In the category of MYOB.

 

Hang in there. Dawn

[ajcire]

Thanks everyone for your thoughts! It's hard because it's not really strangers who would notice my son's behaviors. It's acquaintances and the particular case that got me so upset yesterday, it's family. Family who mean well but who don't get it at all.

[MichaelTampa]

On the "baby talk", here I am 42, and I go into baby talk sometimes too. I tend to do it more when I am feeling comfortable, but it is not on purpose. After I was diagnosed with TS a year ago (from symptoms since childhood), I just put it in the category of vocal tic of speaking in different accents not on purpose (like indian, new england, etc), and just considered it another "accent". After reading on the Dr. K. site today a detailed description of PANDAS, and it lists baby talk, I am looking at that a little differently. As Faith points out with her example, it can be hard to tell, but, from my adult perspective, it feels like a real symptom, and I may notice I've slipped into that after it happens, or not, and I may be more comfortable staying there a while, but it does not start on purpose.

 

Michael

[ajcire]

Thank you for sharing that. Is it "wrong" for me to gently remind him to talk in his regular voice?

 

 

 

On the "baby talk", here I am 42, and I go into baby talk sometimes too. I tend to do it more when I am feeling comfortable, but it is not on purpose. After I was diagnosed with TS a year ago (from symptoms since childhood), I just put it in the category of vocal tic of speaking in different accents not on purpose (like indian, new england, etc), and just considered it another "accent". After reading on the Dr. K. site today a detailed description of PANDAS, and it lists baby talk, I am looking at that a little differently. As Faith points out with her example, it can be hard to tell, but, from my adult perspective, it feels like a real symptom, and I may notice I've slipped into that after it happens, or not, and I may be more comfortable staying there a while, but it does not start on purpose.

 

Michael

[MichaelTampa]

I'll give you my thoughts, but will caveat that I am not a parent, and I might also be different because I am an adult, not a child.

 

I know with one counselor/therapist I went to, she was very focused on energy work (EFT, psych-K, etc.) where it was important to be in tune to the person she was treating, and somehow that approach to things lent me in the direction of expressing more true feelings directly, and with that comfort, I went into baby talk more than anywhere else. She used to encourage me to talk normal, as if I was doing something wrong, and it did put me off some, and then after I got diagnosed with TS, I felt I had ammunition to defend myself that she was being unreasonable there and told her so. But, she eventually came to use the phrase "what would it be like for you to...", ending with, "say that differently", "talk in your more standard voice", "not use that word", etc., and I felt much better with that approach. It made me feel like I was being made aware of it and encouraged to change, but allowed to say that was too hard or a bad idea.

 

She also used that same approach with my repeated use of the terms "b*tch", "chick", "a**hole", "dude" in place of woman/man/he/she/etc. I am sure this got annoying for her to hear that word used so many many times in place of regular words, particularly when the people being discussed were people we both knew that neither of us thought of as a whole in this way, and sometimes that person being referred to was her, in third-person-speak. I truly don't know if I should ascribe it to having a lot of anger to express or coprolalia, but I know I would engineer sentences in a way to use those terms a lot. In any event, that same approach of "what would it be like for you" worked much better on me than the talk she tried about having boundaries and she not preferring to hear that term so many times, blah blah blah.

 

So, to me, I think the key is "gentle reminder", as you suggest.

 

Michael

[FallingApart]

Michael, thank you for sharing this experience. I think this is a technique we call all try with our children in all areas across PANDAS. I know I get so frustrated and want so much to make demands. I know for a fact it won't work so I don't make the demands any more. But I also feel it is not good to just let her get her way. I like this technique for many of the challenges we face in the day to day. The only problem is catching our children before they go over the edge. But it is something to work towards....