Why is my pandas child better in the public eye?

[MIAS_MOM]

My daughter use to be so severe we could not go into public places, most days not even ride in cars, today, thankfully we are out in the public, even showing her horse in a few horse shows. She has a "BIG" ODD and OCD with some tics. When we are out in public, riding bikes or going to church, she smiles, she laughs, she seems "almost" a normal child, despite the hand, feet twisting, and hand smellin. Most people see her as totally normal, even at the dentist, I had to inform them she couldn't hold still and they would just have to work with her, thinking, why cant they see she has problems, but they never saw that. So why when we get home, she turns into a demon? She is unhappy, vocally loud, very, very, very hard to deal with, and the ocd's are so much worse. I tell people they would have to spend a day at our house to really see our nightmare. Is it she feels more comfortable at home to let it out, or holds it in while in public, only to release it at home? It's frustrating. Doesn't change anything to have this answer, but I hear other pandas moms asking me the same about their child, any thoughts or answers?

[HT's Mom]

I'm certainly no expert but it is my understanding and our experience that kids with OCD and/or TS are able to suppress their compulsions or tics in public to a large extent. It takes a tremendous amount of energy to do so, (the compulsion is still there) and the behaviors almost build up and have to be let out once the child is in a safe place. We have had the same thing - none of ds's friends would know he has a problem, and my friends or family all say "he seems fine," even when I'm describing how bad he is.

[peglem]

Holding it in causes a lot of anxiety, but I agree the public isn't safe so you have to. Then when you're in a safe place like the bathroom/nurses office/home you can let it out and it's always worse at home because the whole day has built up to that point and it has to come out. Or sometimes in public you can manipulate it and have little non noticeable symptoms to the public to get out the anxiety.. then when you come home it's not as bad. It's like breathing underwater, you either go under and hold it in- then when you come up for air it's a huge gasp. Or you go underwater for short periods of time and come up for air with little gasps. You learn when you can do which one based on the situation/scenario that you're in. As long as you've learned and seen what "normal" is, you can put on an act for people.

-I have PANDAS---- was completely normal at school and in public..... crazy once I got home (During the worst of it)

I love the under water analogy!

[SSS]

Yes, this still fascinates/breaks my heart to see, even after seeing it for years.

My dd6 started 1st grade a couple of weeks ago- she behaves in that classroom, brings home the weeks work with beautiful penmanship, all correct answers, smiley faced from the teacher, but absolutely loses it when she gets home, and all this last weekend :-( We are talking under the desk, vocal ticcing/screaching like a wild animal, aggression, name calling to family, you know what I mean. She would never, ever dream of acting like that at school.

 

I wonder what the price is on her body for holding it all in like that every day? How can that stress possibly be good for her? But, she is getting the education, she has fun stories about the other kids there....on one hand, it IS good for her. She won't homeschool for me, and I'm not good at it, either, so that is out.

I try to make it as easy as possible, stocking up on grey colored only sweat pants (only thing she will wear) and rotating the same 3 old t-shirts, packing a lunch I know she loves, right there to pick her up in person...no bus (way too much anxiety)

 

It is hard when everyone else thinks you're crazy (But, if you look close, or pay any attention, you CAN tell. The school can tell she has anxiety, and as she gets older, you can't pass just for 'normal little kid stuff')

I have always wanted to leave with her earlier than every one else at large family gatherings for years- no one could understand- but I did. It is very hard on them.

[MIAS_MOM]

SO, If I could possible feel any better knowing this is true for so many, it does help me at least feel like I'm not so much "the crazy lady!" I do wish others could see what we really live with, but not gonna happen. It's hard when your own family questions you, My GREAT Mother who is there for me thro everything, didnt even want to come to the ER one day when 5 nurses couldnt keep her restrained, bc she thought it was no big deal until I screamed at her to get there, then her eyes where open for the first time in 2 years. I don't like feeling like the "crazy mom" but thats how alot of us are labeled. Thanks for a little encouragement, and sorry you all deal with the same. Pandas 16, I always love hearing from you, I believe you are an amazing young lady.

[SSS]

I wonder what the price is on her body for holding it all in like that every day? How can that stress possibly be good for her?

 

I've never found any long term negative effect. No long term anxiety issues or anything like that. I can only speak for myself but, I think it's good. You train yourself/condition yourself to be normal. I've been doing it for +10 years. It's just how it is. Once you're in a safe place the anxiety goes away completely once you have the tic or whatever. Then, you just start over until you can't hold it in anymore. I've found I can even build up how long I can hold things in for. It went from 1 hour to weeks allowing me to give the people around me a better quality of life.

 

 

Thank you.