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how much abuse can a parent take?


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I feel your pain! My son presents with tics and mood issues. I was just saying the other day that as much as you don't want your child to be sick with ANYTHING, at least with other illnesses you can see more the ways in which they are sick. My son has an illness that basically just turns him into a cranky little jerk (LOL.. said with love, of course). It's so hard not to completely lose my cool with him much of the time. How do you NOT discipline a kid who is incredibly fresh and mouthy and rude? Even when you know that when he's not all "PANDASy" he is an absolute sweetheart? When you are in that moment, it is almost too much to handle.

 

The irrationality and the constant arguing are so exhausting. My son HATES to wear a coat, hat and gloves to school. Much of the time I'll let him wear a sweatshirt if the temp isn't too cold, but sometimes I have to force the issue (like today, when it was 5 degrees and super windy). He thinks that he looks ridiculous and "so stupid" in a coat, hat and gloves. This is New England in the winter. You look pretty darn silly if you AREN'T wearing those things, but he just can't see that. It has to be some form of OCD for him.

 

So, in answer to your question, I have no idea how to handle the behaviors constructively, but if you find out, let me know! LOL

 

The constant yelling, the "be quiets!", the glares, the disrespect. The absence of any desire to cooperate at all on anything.

 

What in the world is the constructive approach to take when they don't listen to reason?

 

At wit's end as you can tell. Too many years of this stuff. You know. :o

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I have to admit, after hours and hours of that sort of chaos, I tend to just go silent. Nothing I say is going to change anything during a period like that, and I think my DS is on overload, too, and truly can't take in anymore information/data/ideas/comfort.

 

We go to our separate corners . . . he to his room, and me to mine. And then, sometimes after 5 minutes, sometimes after 50, he's calmed down enough and so have I to either try and talk some of it through, or just have a long hug or cuddle and try to move on. I have to say, this process has become smoother and smoother as DS has grown and matured and come to understand that the OCD/PANDAS doesn't define him . . . it just overtakes him at times.

 

Good luck, and hang in there. It WILL get better!

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I feel your pain! My son presents with tics and mood issues. I was just saying the other day that as much as you don't want your child to be sick with ANYTHING, at least with other illnesses you can see more the ways in which they are sick. My son has an illness that basically just turns him into a cranky little jerk (LOL.. said with love, of course). It's so hard not to completely lose my cool with him much of the time. How do you NOT discipline a kid who is incredibly fresh and mouthy and rude? Even when you know that when he's not all "PANDASy" he is an absolute sweetheart? When you are in that moment, it is almost too much to handle.

 

The irrationality and the constant arguing are so exhausting. My son HATES to wear a coat, hat and gloves to school. Much of the time I'll let him wear a sweatshirt if the temp isn't too cold, but sometimes I have to force the issue (like today, when it was 5 degrees and super windy). He thinks that he looks ridiculous and "so stupid" in a coat, hat and gloves. This is New England in the winter. You look pretty darn silly if you AREN'T wearing those things, but he just can't see that. It has to be some form of OCD for him.

 

So, in answer to your question, I have no idea how to handle the behaviors constructively, but if you find out, let me know! LOL

 

The constant yelling, the "be quiets!", the glares, the disrespect. The absence of any desire to cooperate at all on anything.

 

What in the world is the constructive approach to take when they don't listen to reason?

 

At wit's end as you can tell. Too many years of this stuff. You know. :o

Wow, ladies, that's tough. I keep thanking God my son is staying sweet and cooperative, I can't imagine what you are going through. The only thought I have is to borrow some CBT techniques and try to keep things in perspective. Maybe take a nice picture of yourselves hugging your sweet child in a good day, and keep it somewhere prominent to remind you THAT is your child, and not what you are dealing with at the moment. Also, when your child is NOT having a PANDAS moments, talk about the irrational things that go on, and have him agree that does not make sense. Then when they are wacky you can say, "This does not make sense, and I am not going to engage" The child might go on with whatever, but at least you are not getting dragged down into the mud, and you don't have to feel bad, because it's OCD/rages you are saying NO to. It is very hard but somehow try to find a way to cope with this and limit the impact on the rest of the family. You can't really help your child if you let him/her get you out of control.

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The constant yelling, the "be quiets!", the glares, the disrespect. The absence of any desire to cooperate at all on anything.

 

What in the world is the constructive approach to take when they don't listen to reason?

 

At wit's end as you can tell. Too many years of this stuff. You know. :o

 

I cry, laugh, scream, lock myself in the bathroom, hide under the covers, make up songs in my head about how much things suck, wish I could run away, live in fear, call my Mom. Every day right now I wake up and thank god that my dd8 is feeling better. I don't want it to ever end. I don't have any advice for you, I am sorry. I only have understanding and compassion for what you are going through. Nothing worked for us when she is like that.

 

Susan

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As I look back I think a lot was a out of body experience for me. I have no idea how I dealt with it! I think I had a lot of times when I just was silent and going through the motions. You have to have tight lips so you don't say anything you'll regret. You have to have the energy to get up and run after them if they should do something that need instead tending. You have to have strength if you have a child with rages in order to hold them down at times. You have to have creativity to try to get them to overcome doing a habit or ritual or just to get them to leave the house. You have to maintain a smile and laughter for the other children you may have.

 

By the end of the day, you have nothing left to give and you fall onto the couch either spacing out or breaking out in tears.

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The constant yelling, the "be quiets!", the glares, the disrespect. The absence of any desire to cooperate at all on anything.

 

What in the world is the constructive approach to take when they don't listen to reason?

 

At wit's end as you can tell. Too many years of this stuff. You know. <_<

 

One approach that at time helps is when I remind him how "I totally went out of my way to get (or do) such and such for you and the least you could do is quiet down and cooperate with me".

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hey Michael - i know you've been through just about all treatments - were you saying you were thinking about trying keflex?

 

just our experience - when we first discovered it was pandas with high titers and positive strep culture suggested by behavioral therapist b/c of difficult behaviors and extreme separation anxiety/school phobia, his ped put him on azith. this was horrible for him - all pandas behaviors intensified. we switched peds to much more in-tune ped. he thought he may have a sinus infection(confirmed all cavities infected) and put him on 30 days keflex. at the time, we thought he had a pen allergy, that's why they went to keflex. within 3 days, he was back to pre-pandas self.

 

i do find it amazing how different kids react with different abx. i'm not sure keflex is used that prominently on this board but it was the one for us.

 

good luck.

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After an entire night of night terrors every hour or so last night, where I was kicked, punched and foul language was used (sadly a few words by me as well by 3am), I wonder this myself! I ended up in his twin bed with DS as it was the only thing that helped even slightly. I've not even seen a NT in him in a long long time, so was completely unprepared for that last night!!

 

I also wonder how to handle the discipline. I mean, if he REALLY can't help himself... But then he is SIX years old and can't be permitted to carry on as if he owns the place and to do whatever he wants, right? Constantly trying to find the balance here.

 

We have a bilevel home and DS is now scared of the downstairs - so that is my escape a lot, leaving DH to deal with it. But I'll be on the first step on the way back up and the abuse begins again (when he's in a a bad way that is - this isn't constant!). And honestly, I've also started smoking more :( Since I have to go outside to do it and he isn't allowed anywhere NEAR me when that is happening, it's my cool down escape. Maladaptive behavior at it's best, huh? I need to find another way to cope for sure!

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After an entire night of night terrors every hour or so last night, where I was kicked, punched and foul language was used (sadly a few words by me as well by 3am), I wonder this myself! I ended up in his twin bed with DS as it was the only thing that helped even slightly. I've not even seen a NT in him in a long long time, so was completely unprepared for that last night!!

 

I also wonder how to handle the discipline. I mean, if he REALLY can't help himself... But then he is SIX years old and can't be permitted to carry on as if he owns the place and to do whatever he wants, right? Constantly trying to find the balance here.

 

We have a bilevel home and DS is now scared of the downstairs - so that is my escape a lot, leaving DH to deal with it. But I'll be on the first step on the way back up and the abuse begins again (when he's in a a bad way that is - this isn't constant!). And honestly, I've also started smoking more :( Since I have to go outside to do it and he isn't allowed anywhere NEAR me when that is happening, it's my cool down escape. Maladaptive behavior at it's best, huh? I need to find another way to cope for sure!

 

When my kids were younger, like 2-4, I reacted to all their behavor issues as sensory issues and stopped any time outs or regular parental reactions and started with redirection or sensory activities. It worked wonders! If there was a tantrum, I had them jumping around or exercising or wrapping them uptight or doing art projects. Now that they are older (7 and 8), they look at me like I'm a nut if I say "OK, everybody start marching! Now Jump 5 times!". Boy I long for those days. I guess I need to get smarter and figure out what the 3rd grade equalivant woiuld be. We co-slept for years too so I could get some sleep, otherwise we were up all night for one reason or another. Never NT but anxiety, bedwetting, etc.

 

Regular dicipline does not work when they are not well. I have no good answers for you on that one. In a way you are lucky you have a place to go where he won't follow you. I have had to sit with my back against my door blocking their enterance into my room just to have a moment to myself but there they are on the other side crying and begging me to come out. But I don't have a Dh to help out either.

 

Regarding your coping skills, you can only do what you can do. If smoking was not so far behind me, I'd be right there with you. Instead I grab the bottle of wine, if I have any in the house. I find I can't keep it around all the time or otherwise, as soon as the kids are in bed, I'm running for a few glasses to even me out!

 

Big Hugs!

 

Susan

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Turn on the TV! :(

 

Honestly, my kids watch little of it overall, but on those bad days, I relent and let them watch more. It's not the greatest pass-time for them, but I figure it's healthier than fighting with each other or with me due to behaviors they don't seem to be able to control - and it gives me a mental rest. I agree that the discipline is hard - it doesn't do any good during difficult phases anyway, but on the other hand we don't want to send the message that the behavior is acceptable. We just try our best to avoid any kind of challenging situations on those days by keeping the agenda light. Luckily for us our kids are not symptomatic most of the time - just for 2-3 weeks after infections so far.

 

 

After an entire night of night terrors every hour or so last night, where I was kicked, punched and foul language was used (sadly a few words by me as well by 3am), I wonder this myself! I ended up in his twin bed with DS as it was the only thing that helped even slightly. I've not even seen a NT in him in a long long time, so was completely unprepared for that last night!!

 

I also wonder how to handle the discipline. I mean, if he REALLY can't help himself... But then he is SIX years old and can't be permitted to carry on as if he owns the place and to do whatever he wants, right? Constantly trying to find the balance here.

 

We have a bilevel home and DS is now scared of the downstairs - so that is my escape a lot, leaving DH to deal with it. But I'll be on the first step on the way back up and the abuse begins again (when he's in a a bad way that is - this isn't constant!). And honestly, I've also started smoking more :( Since I have to go outside to do it and he isn't allowed anywhere NEAR me when that is happening, it's my cool down escape. Maladaptive behavior at it's best, huh? I need to find another way to cope for sure!

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I feel like I have asked this question all summer long. THis is so hard and so draining. I agree with the TV thing. We have been doing a lot of that here so that we can stay sane.

 

But we have also started ABA therapy. I think it stands for Applied Behavioral A???. I've been wondering if others have tried this and will start a separate post on it. But all of the sudden, the ABA combined with our recent IVIG has made the last 2 weeks liveable. I'm no dummy to think that this will last forever, but I think our whole family are learning some good skills for both an exacerbation period and a helathy period. It seems the ABA people have the answer to the "you can't ust let the child run the house" question that we all face.

 

Now, we have only been working with them for about 2 weeks, so I don't have a ful opinion yet. But, they have actually helped our house.

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I feel like I have asked this question all summer long. THis is so hard and so draining. I agree with the TV thing. We have been doing a lot of that here so that we can stay sane.

 

But we have also started ABA therapy. I think it stands for Applied Behavioral A???. I've been wondering if others have tried this and will start a separate post on it. But all of the sudden, the ABA combined with our recent IVIG has made the last 2 weeks liveable. I'm no dummy to think that this will last forever, but I think our whole family are learning some good skills for both an exacerbation period and a helathy period. It seems the ABA people have the answer to the "you can't ust let the child run the house" question that we all face.

 

Now, we have only been working with them for about 2 weeks, so I don't have a ful opinion yet. But, they have actually helped our house.

 

Applied Behavior Analysis. It worked for things Allie actually had control over, but didn't help at all with ragey meltdowns/aggression/obsessions. Her school 2007-last spring was an ABA school...by the end of last year, the behavior specialist informed me that ABA is not working for my child-they've been "through the book"-twice, so I should take her to the psychiatrist to get some help with that (actually the school hires a non staff "consultant" for that, since its not legal for them to do it). They wanted to talk with her psychiatrist- but I would not allow it. We had tried several psych meds during those 2 years, even the holy risperdal. She's at a different school this year. :( :(

Anyway, what I've heard from others in the autism community is that when the kids are very young, 3-6 years old, it seems somewhat effective...but older than that seems to be mixed results. Many adult autistics are very critical of it and report that they felt demeaned and manipulated by it.

But, if you are seeing positive results- and since you are post IVIG, it may just be a matter of restoring regular expectations and consequences again- they can help you be systematic about that. But I think when kids are in exacerbation it can make things worse as you insist they get control of things they just can't.

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Again, I think our kids tend to be a lot alike. I told my son I'm not even a parent anymore it seems like. I get no respect, I can't discipline, he just looks at me and he's going to do what he's going to do. He seems to feel bad about it, but that doesn't change anything. The one thing that does work for us, because my son is super super shy and totally lacks communication skills, he won't talk to me but will TEXT till he's blue in the face! So technically I yell at him by texting. Not during a fit of rage, but as it calms down. I'll text him " you were rude, disrespectful, wrong," whatever. Makes me feel a little better because I feel like I get to say my peace, and texting is sort of a 'calm' way of doing things. Like writing it gives you a chance to think about what you are saying, and there are no 'facial expressions or body language' to add fuel to the fire.

But yeah, it sucks. I'm pretty sick of it and its only been three months for us this episode, he's had others. ONLY 3 months, my gosh seems like a life time, but compared to some people I know that's only a drop in the bucket.

The constant yelling, the "be quiets!", the glares, the disrespect. The absence of any desire to cooperate at all on anything.

 

What in the world is the constructive approach to take when they don't listen to reason?

 

At wit's end as you can tell. Too many years of this stuff. You know. :(

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