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Should I stay or should I go?


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(apologies to the Clash :) )

 

Ok, I wanted to get the opinion of those here since most parents don't understand this dilemma.

 

In a nutshell, we have the opportunity to go to the beach for a night with a group of friends, one of whom has a house at the beach.

 

DH cannot go because he will be out of town. I rely on him heavily to manage flares with DD.

 

She has been really really bad for a while now and we can't trace it. She is on abx and we sometimes give her ibuprofen which helps, but not always,.

 

We have to plan it 2 weeks in advance, and we both know that at any time, she could snap back and be her normal, happy self. She always wants to be around people, oddly even when she is flaring, but often I keep her away because I get tired of damage control.

 

Plus we of course both really want her to be able to be with friends and have fun experiences.

 

Right now the thought of being in a house with her the way she is makes me physically nauseous. However, often even when she is flaring, she will totally surprise us and do fine with a change of circumstances, and distractions.

 

DH is leaving it up to me since I will be on my own in managing her.

 

Should I do the "safe" thing and just not plan it? Should I roll the dice and go hope for the best? What if she is horrific and everyone comes back hating her (not really, but you know...)..... If I don't plan it, and she is fine by then, I will regret it.

 

What to do!!??

Edited by ssfkat
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This sounds so familiar, both the dilemna and feeling like you have no one else to share it with. We have chosen to stay mostly. I have found the very same thing - skipping the meaningful events in life is difficult on their psyche and moral. Partly this is done to avoid sick people. Partly this is done because they have problems following through with the events. And partly its because the parents have needs too. I try, I swear, to be a good parent to not show negative emotions like frustration and anger. Its wearing and consuming, because nothing its constant and everything is constantly difficult. Sometimes we skip things because we are just worn out.

 

We are trying to do the fun and meaningful things, just in small doses. But hey I dont know you from Adam, so go. You will either be happy you took the advice or have a good story to tell us.

 

BTW, what items are you chasing down as flare triggers?

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Is it the ocean? My DD LOVES to be near the ocean. You may experience a miracle taking her there. Something about the fresh sea air. My DD was flaring badly in June. We flew to Cal. and I took her to Newport Beach. I went to the beach with an anxious flaring child and came home that afternoon with my daughter! She was happy, singing, grabbing my arm lovingly. I told my husband - It was like magic! It totally snapped her out of her flare (which was caused by grass pollen back in CT where we live). I would go and let her spend time out in the fresh sea air.

 

My mom lives in a coastal town here in CT. We try to go visit once a week to the beach there for the fresh sea air since we discovered this.

 

I hope the same happens for your DD on your trip!

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I would go.... I agree with Maryaw, sometimes a change of scenery/environment is just what you need! If it's only 1 night, than its not such a big commitment. Will she typically act out with other people? (My dd usually only lets loose at home).

 

Take a chance. Sounds like there's more to lose by not trying than trying ;) good luck!

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Just a thought, what if you go, but have a backup plan. Such as, if she gets out of control you and her could go check into a nearby hotel. That way you avoid any embarrassment it might cause to be around other people who don't understand.

 

My son is now in 9th grade and he loves doing speech and debate tournaments with his school. Most of these tournaments require an overnight stay. He really wants to be there to hangout with his friends and have fun, but his ocd and nightly rituals cause him so much anxiety that he is overwhelmed. Usually what I do is chapparone and get my own room. This way if he feels he can't stay in the room with the other boys then he can come stay in my room just down the hall in the hotel. This is like our backup plan. It all depends on the situation. I always feel it's best to have a plan b.

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Hello all and thanks for the replies.

 

As it turns out, others' schedules dictate that the overnight stay is not an option. So, it's now a day-trip which takes the pressure off, AND DH is now able to go since it will be a day before he leaves. So she will get the association and fun without the added stress.

 

dasu, the only definite triggers we have are food-related so far. For example, she was fine for about a week, and we let her have mustard, and within hours she was a pistol, and stayed that way for days. She absolutely loves mustard, and when we had her tested for food allergies, that one was high on the list. We had her off of it forever, but out of sympathy and stupidity, occasionally we will let her have it to see how she does. We also know that she responds negatively to salicylates, which is why the Feingold diet worked for so long. Dairy makes her physically ill. We are currently living out of the country, and are working with Dr. T via skype. This week I am hoping we can find a lab to do some of the bloodwork he has requested in order to see what else is going on. But somehow this food issue is involved. We are sure of it. Also, the move here has been hard on her, and her bh has gone downhill pretty bad since being here. I think her frustration and homesickness is manifest in that way.

 

maryaw, I agree with you -- the sea is very soothing, especially for me :). Since it's a day trip, we will definitely go.

 

beerae22, That's the thing -- she used to only act out with us, and it was like everyone thought she was fine. But now she is getting bolder and bolder and not as affected by embarrassment, which really bothers us. We also used to take her privately and talk to her when she acted out in front of others, but she started to use that as a license to do things she knew she shouldn't do because we wouldn't say anything in front of people. But I've started speaking to her matter-of-factly and telling her that her bh is not acceptable, even in front of people. It makes everyone so uncomfortable, and it really doesn't help when she is flaring, but what else is there to do? You cannot just ignore some of this behavior.

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Thanks for listing your daughters allergies. I did not even think that mustard would be on the list. I have suspected my kids have some allergy to foods but have never been able to establish what triggers things. sometimes they get set off in the morning without any apparent trigger at all. Need to follow up on this (and a lot of other things too...)

 

 

My kids may have similar issues - tell me if this is familiar: A lot of this centers around sex, bathroom and derogatory or inflammatory talk or behavior. During outbursts they say things like "stinky smeary poop", "butt, look a butt", "hairy penis", "what the heck", "spludge!". Usually the inappropriate words occur in public. At home they are more likely to devolve into running and jumping around, screaming, hitting, throwing objects. They either fight with each other or with us. Our doctor explained that these outbursts stem from high dopamine levels and are a function of anxiety. When they then act of the thoughts, that increases the anxiety and thus dopamine. Its a vicious cycle. And for us its worse with two kids who can both trigger the cycle.

 

I haven't found any silver bullet. Our general approach is to control their environment. The idea is to keep anxiety low and not over-stimulate their brains or wear them out (both have some level of control, which is barely discernible to me) They dont go out much, and if they do its for short measured doses to familiar places. My kids love to play together, but they can only get along for short periods, so we try to take breaks. We try not to let them see or hear inappropriate behavior as the OCD just keeps those thoughts bouncing around (and we certainly dont want them doing seriously unacceptable behaviors in public). That includes any kind of bawdy or sexual/sensual behavior, any interactions which highlight conflict or anger. Anxiety is also heightened with discipline or reminders that its inappropriate. When the do get to acting out inappropriate or belligerent behavior we try to redirect them to something else. They know its inappropriate they just seem to need help processing the feelings and moving on.

Edited by dasu
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