help with coping - ?

[smartyjones]

ds6 is back on an anti-viral that caused a tremendous herx last july. it's much better this time around but still producing symptoms. i know this is neurological and am hopeful it will soon pass.

 

however, it's driving us all crazy. some are funny little dittis that stick in your mind -- "aaaaallllllmmmmmooooonnnnnddddd, almond breeeeeeeeze" repeat, repeat, repeat. "did you hear the ding?, did you hear the ding? did you hear the ding?' others are more troublesome like saying the same 2 numbers next to ds9 who is eating breakfast. i tell ds6 to please go in to dining room and he can say all he wants. he refuses. ds9 goes away. ds6 follows him and continues same sayings. ds9, understandably, is terribly annoyed. it's been about 2 weeks with various symptoms and ds9 has been understanding -- but this is wearing on him.

 

before this, he was doing this combo 6 yr old/tic thing. he's imaginary pitching/throwing. i tell him to go outside or in the open room. he likes to do it around us. he cracked me on the wrist the other day.

 

i think there are no 'consequences' for this as a compulsion he must do, nor is it an 'involuntary' tic. i think it's an 'uncontrollable autistic type tic'. eamom once posted a video clip of a woman discussing tics vs. compulsions. she mentioned this and it was the only thing i've heard that describes it so well. it's a movement that provides comfort as in righting things - i guess kind of like a stim.

 

so - i am not really trying to get him to stop -- just move to a more acceptable place. i think we somehow have to manage this rather than just let it be. is this wrong? i was skimming a book this weekend by Temple Grandin and she said her mother always insisted on proper table manners and interpersonal manners and she now thinks this is good and suggests such for parents of autistic kids.

 

anyone have any ideas or thoughts? thanks.

Edited May 17, 2011 by smartyjones

[lmkmip67]

I wish I knew. We are kind of in the same place with out first IVIG 2 1/2 weeks ago. Ian is dealing with worsening symptoms right now, too. He makes bird calls, had a touching thing on on for a while, that may be subsiding, pretends to throw too, etc. It is wearing on me and DH. I am trying to remain low key about everything. But it is hard some days. My suggestion for others in the family is to just make sure everyone has enough alone time away from the tics and compulsions. It does get annoying, even to me. I feel bad, but I just want a break sometimes. So I am just trying to take time to myself when I can. Try to make sure other kids in the house have time away, too. Realize that life is not going to be fabulous right now, this is tough, but this too shall pass. these are all things I am doing myself. I do try to keep some basic rules (touching himself has to be done in the bathroom, or bedroom, we set a timer for wiping or he would be in there all day, you sit during meals, etc). But i am trying to relax on some things as well. One day at a time!

[MomWithOCDSon]

Hey Smarty --

 

I wish I had a magic formula for "managing" stuff like that, but really, all I can do at this point is commisserate.

 

While we really don't have "tics" per se, DS definitely has some compulsions that, while slower and more controled than I think of in terms of a standard tic, are nonetheless physical, openly apparent movements that can interrupt and interfere with "business as usual." Some of them are receding as he heals from this most recent exacerbation, but some seem to be hanging on more tenaciously than usual.

 

Also, with regard to your reference of Temple Grandin, DS also can display those "autistic" types of behaviors and processing, the more intense his exacerbation. Even 100% healthy, he's got a dose of Aspberger traits himself, despite a willingness to look people in the eye, great oratory skills in groups, etc. But he's generally only interested in what he's interested in, and if he's not interested in what you're interested in, he has no compunction against letting you know it! And his interests are intense and all-consuming. Stuff like that.

 

Anyway, some of his physical compulsions also have sort of "autistic" feel about them; he knows he's doing them, he knows they look odd to the outside world, but he doesn't care enough to stop them. He doesn't care if his peers notice, or if everyone at the dinner table stops and stares while he does this pervasive one: passing his hands over each dish/object at his place setting, like he's "blessing" the fruit, the entree, his drink, etc., before he'll begin eating.

It normally takes between 10 and 20 seconds, but they can seem like an eternity when you're at a restaurant! I think he's engaging in some OCD "magical thinking," telling himself that this behavior makes his meal safe to eat.

 

I've tried to get through to him on a basic social/peer level: don't your friends think your doing that is odd? Doesn't it take up too much of your time during lunch at school? Wouldn't you rather not call attention to yourself like that at school? He doesn't care. The compulsion is just too strong, I suppose. Some of his lingering behaviors we have managed to talk him into less attention-grabbing substitutes; for instance, when he was working on a hard math problem, he had a tendency to start rocking in his chair (talk about classic autistic-type behavior!). Knowing how that reads to the outside world in general, whenever he'd start rocking, we'd give him one of those squishy stress balls to squeeze instead while he thought the problem through. Now he's taken to that behavior instead, and the rocking has pretty much stopped. But I can't think of an adequate substitute for the Food Blessing.

 

So, I guess I could suggest substitution as a "management" technique. It's just that some things are hard to substitute.

[butterflymom]

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Edited October 9, 2015 by tampicc